I haven't posted much lately because I've been sick.
With the latest developments, I have promised a few very close friends I would let them all know what is happening.
I have bleeding internally since August 2013, we just had no idea from where. My hemoglobin and iron levels have dropped from 14 to barely 8.0. If you've ever had low iron, you know this is a serious drain on energy.
Since July I have had 3 major admissions into the hospital. But I want to give you a little background on me before I write it all here.
In 1991 I had a bi-lateral lung transplant with heart surgery.
In 2002 I had a single left lung transplant- which left the right lung from 1991 still in place.
In 2005 there was a kidney transplant, but I'll leave that in the past for now.. It's doing perfect.
In June I had a bronchoscopy and they found infection. We've known for 5 years that my right lung was basically dead- but causing alot of trouble. I've done the rounds of IV antibiotics, and inhalants each time they arise.
As June made it's way into July, I was NOT getting better, even with the antibiotics.
The beginning of July, one morning I woke up, went to the bathroom and could not get up. I had my head in the trash and hemorrhaging blood. The Doctors call in hemoptysis, I call it hemorrhaging when you can't pick your head up without coughing and bringing up uncontrollable bouts of blood. Well, I finally made it to to put on a shirt so we could go to the ER only to spend another few minutes at the sink.. Then I found the kitchen trash can.. Larry handed me a plastic container and said use this, we gotta get help. I will admit, I felt this was going to be my last day. As a lung transplant, my main fear is suffocating. Well I found a new way to scare me about my last day.. I could just see that one...
I was admitted to Shands, my transplant center (4 hours away),, the longest drive of my life. I was put on Cefipime, an antibiotic that my infection was sensitive to and taken off Coumadin. I was feeling better but still had small bouts of coughing blood. I came home...
Six days later, I was once again admitted to Shands. The blood episode caused disseminated Shingles. The shingles were not in one area, but literally everywhere: scalp, ears, navel, stomach, chest, face, and back.Another round of IV meds began. This time strong Anti-virals. I will forever be on a does of anti-virals to keep it at bay, lung transplants cannot get the shingles vaccine because it is a live vaccine.After 9 days I once again came home, itchy but home.
I was home all of one week and my temperature went to 101 and I started coughing blood again. Long drive to the hospital.. This time I was more prepared. My nightshirts and pajamas were all clean!
After a lung scan, bronchoscopy, heart echo and heart cath, the results are:
The infection is chewing away at my right lung and when it finds a small blood vessel, it chews until I bleed. My teams main concern is, what will happen when it finds a major blood vessel. According to them, I won't make it to call for help. I have always been told the right lung cannot be removed. The left lung would increase in size to fill the empty space. Well, they found that it already has, because my right lung as it shrinks has adhered to my pulmonary artery, trachea and chest wall. So it has enlarged as much as it can, because the right lung has pulled everything over ( reminiscent of your spouse stealing all the blankets).
My saving grace in all this is that my left lung is still functioning at 100% with a sat level of 97-100 !
Which brings me to my choices:
There are 2 types of lung recipients: those who are waiting for a 2nd chance,, and those who do not have one. While waiting for my 2nd lung transplant I jumped through every hoop my team threw at me ! Now, I want to enjoy my life.
I had chosen to be on minimal inhaled anti biotics to protect my left lung and live what life I have left. Painful but mine. This is opposed to feeling tied to a nebulizer for 12 treatments a day. I would never leave the table and feel I would die with regret that it was not my life. Basically be as comfortable as the pain will allow, but still die happy. This would allow me to start rebuilding my strength and endurance. They keep me one level and I take the bar higher. Dying with no regrets that I did NOT try everything I could to keep going.
My last day my team came in and asked if I would consent to a heart cath. My surgeon, thought he might be able to remove my right lung and allow save my left lung. His basis of thought being that I have beaten all odds, 20+ years is something to be proud of. They told me whatever I was doing at home - keep doing it !
My heart cath showed my pressures in my heart lower than they thought. so now they meet next week and decide if it is worth the risk.
Since the lung has adhered to my pulmonary artery, trachea and chest wall, the surgeon will have to literally peel it away. This will cause extra bleeding and a much longer, more difficult recovery. So it is something I have to think about as well.
This is honestly the first surgery where I didn't jump up and say "Let's do this !" There is alot to consider this time.. I am older, weaker at the moment, but I can remember a 90 lb weakling looking at my Momma asking "Do you think I'm up to this?" That was when I got the call for my 2nd lung transplant and I knew I had days left to live. But my left lung is the deciding factor.. I may get many more years if I try, but I may not..
We all get to a point where being kept comfortable and free of pain sounds like the best plan. I am truly of tired of fighting. Fighting the pain that has gotten worse. Fighting the cough, from the right lung. Sleep deprivation. 4 pillows. BUT I knew this could happen when I agreed 25 years ago to be listed ! Well, not the blood episodes. As a lung transplant, my biggest fear is dying of suffocation. I now have a bigger fear.
The weight loss has been an added plus. I am forcing myself to eat, I must. I have too much to live for to give up now.
This blog post was not written to garner sympathy. Please do not think me rude, but saying this. Sympathy keeps a person in those doldrum thoughts of Oh woe is me. That is not where I choose to be. I believe if we cannot say something positive to lift someone up... keep quiet. I rarely post on my FB page about my pain or issues for that reason. I am there to cheer my friends up and me in the process..
So either way I see this as a win situation... I can sit back, relax and enjoy what I have left or I can hopefully get surgery and have more time of planet earth.. Either way I am doing this my way.. I will have a LIFE not an existence.
Sunday, August 17, 2014
Tuesday, February 11, 2014
One Year
12 Months
365 Days
8760 Hours
525,600 Minutes
31,536,000 Seconds
However you choose to look at i t, it's a long time..
February 10, 2013 I helped my lil guy cross over to no more pain. And my pain was just beginning.
I know many would say, he is just a dog. To those I say you have no idea the depths of compassion a 10lb Toy Fox Terrier can have.
Not being one to support Pet stores in the mall, this is one time I did. I saw this tiny lump shivering in a cage, from outside the store.He drew me in, and when I saw his face I knew I had to get him out of there ! His paws were so small he could barely walk in that horrible cage. When I held him (only 4 lbs) he curled up in my palm, laid his head on my shoulder and I was lost. He was covered in fleas, but I didn't care- he needed me (or I needed him). I took him home that day, gave him a bath and he had the shiniest white coat I have ever seen. That first night, he slept curled in a tiny ball on my chest. I realize now, that is how he stole hearts. He may not have been a rescue, but he rescued me. I was facing a 2nd lung transplant, with little hope of it happening. Yet this tiny bundle of energy gave me the will to get up each morning, just to see what he would get into next.
His registered name is "Dragon Beast", his nicknames ranged from DB, Dibs, Dingbat, to lil buddy. He brought more chaos and more joy to my life than I could ever write here. In many ways he was like a child, he would keep trying until "no" became Oh go ahead ! Then he would run off with that little nub tail of his wagging in a circle faster than a wind mill. As a puppy he learned via hand signals. I was on oxygen and sometimes it was better to not talk. I'd point to the chair where his leash was, he'd jump up, get leashed and we'd take a short walk. Upon returning he would again jump up to have the leash removed.
As a puppy he loved to be on the back of chairs with his 2 front paws massaging your scalp. He'd pop his head around, look at you , disappear and start all over again. Ever the one for attention, that's Dibs.
I once caught him and CC his brother in the back yard playing tug of war with a bra- they found it in the dirty clothes basket. I guess it was fair game! He loved getting the others to play.... He became known as the Great Instigator ...
He would let us know when to do things. Bed time meant quiet time. He'd pick out a toy, run to the bedroom, wait a few minutes and come back out. Barely peaking around the kitchen cabinet as if playing hide and seek. Wide eyed, tail wagging, toy in mouth- signaling time to turn off the lights "I'm Tired"
On a visit to my Mom's one year he even came out with his bags packed on the day I was scheduled to leave as if he knew it was time !
He loved going camping !
He loved hiding and staying warm!
He loved being close !
He never missed a surprise !
365 Days
8760 Hours
525,600 Minutes
31,536,000 Seconds
However you choose to look at i t, it's a long time..
February 10, 2013 I helped my lil guy cross over to no more pain. And my pain was just beginning.
I know many would say, he is just a dog. To those I say you have no idea the depths of compassion a 10lb Toy Fox Terrier can have.
Not being one to support Pet stores in the mall, this is one time I did. I saw this tiny lump shivering in a cage, from outside the store.He drew me in, and when I saw his face I knew I had to get him out of there ! His paws were so small he could barely walk in that horrible cage. When I held him (only 4 lbs) he curled up in my palm, laid his head on my shoulder and I was lost. He was covered in fleas, but I didn't care- he needed me (or I needed him). I took him home that day, gave him a bath and he had the shiniest white coat I have ever seen. That first night, he slept curled in a tiny ball on my chest. I realize now, that is how he stole hearts. He may not have been a rescue, but he rescued me. I was facing a 2nd lung transplant, with little hope of it happening. Yet this tiny bundle of energy gave me the will to get up each morning, just to see what he would get into next.
His registered name is "Dragon Beast", his nicknames ranged from DB, Dibs, Dingbat, to lil buddy. He brought more chaos and more joy to my life than I could ever write here. In many ways he was like a child, he would keep trying until "no" became Oh go ahead ! Then he would run off with that little nub tail of his wagging in a circle faster than a wind mill. As a puppy he learned via hand signals. I was on oxygen and sometimes it was better to not talk. I'd point to the chair where his leash was, he'd jump up, get leashed and we'd take a short walk. Upon returning he would again jump up to have the leash removed.
As a puppy he loved to be on the back of chairs with his 2 front paws massaging your scalp. He'd pop his head around, look at you , disappear and start all over again. Ever the one for attention, that's Dibs.
I once caught him and CC his brother in the back yard playing tug of war with a bra- they found it in the dirty clothes basket. I guess it was fair game! He loved getting the others to play.... He became known as the Great Instigator ...
But I think his favorite of all was being close, hiding and warm. He always wanted to be on a lap or held. When I had to sleep on an heating pad for my knees, he would crawl under the covers and fight me for it !
He always slept at the foot of the bed, under all the blankets,and I had to shake him awake like he was a child.. Sleepy droopy eyes finally waking up and looking at me as if to say "already?" That was my Dibs..
In his final months he slept on a blanket at my feet under the ceiling fan. He was like me in that way, had to know air was moving to be able to sleep. That blanket is still in the same place to this day.. The only thing missing is my Dibs :( I touch it every morning and tell him hello, and start my day without him.
Some may not understand the connection we have with our babies. For my part I can only say that being told I would never have children of my own, I hold my boys dear. He rode in a baby sling the last few years thanks to a wonderfully caring FaceBook Friend Jessica and adapted to it like a champ ! Many times on our walks he even fell asleep, snuggly warm, and the sun on his face.
He would let us know when to do things. Bed time meant quiet time. He'd pick out a toy, run to the bedroom, wait a few minutes and come back out. Barely peaking around the kitchen cabinet as if playing hide and seek. Wide eyed, tail wagging, toy in mouth- signaling time to turn off the lights "I'm Tired"
On a visit to my Mom's one year he even came out with his bags packed on the day I was scheduled to leave as if he knew it was time !
We laughed until we cried at his antics that day ! Ever the showman, ever the attention hound..
That is my Dibs.... It hurts as much today as it did 365 horrible days ago... I miss you lil Buddy ♥
And he loved his toys....
Wednesday, January 29, 2014
The Early Bird
Remember hearing that from your parents ?
"The early bird gets the worm." We heard it regularly while Mom was bravely attempting to get us up for school. Or her gentle reminders to not be late.
I'm changing the saying just a little today. The early bird gets sleepy too fast.
My nightly ritual lately is:
All quiet until I lay down for the night. Then as if by magical hour, the cough finds its way home. Not the chronic rejection cough, the thyroid pressing on the trachea cough. The cough that repeats over and over, "I'm gonna make you wish you could breathe and make me stop, but you can't".
Last night it started early. I was sitting in the recliner, and Wham! I finally got things relatively calm but noticed it had triggered A-Fib. This was about 8PM. Gotta love the feel when your heart jumps from 52 beats per minute to 118. I mean all those darned butterflies are flapping their wings in complete unison trying to break out of my chest.
I gave my heart the allotted time to correct itself, to no avail and got my Metoprolol. Now I admit, I detest taking this and resist at all cost. It slows me way down, makes me dizzy and nauseous.
Hoping to sleep the effects off, I went o bed.
Yes my old friend the cough came too. When it finally calmed to let me sleep, my kidneys decided they wanted the night shift. I was up every hour...grrrrrrr
I finally waved a white flag of surrender and got up at 3:30. My heart rate is down, but not where it should be. Anothe dose of Metoprolol might do it, but not until later. 12 hours per dose, would be 9AM. But I have a 9:30 Doctor appointment for suture removal and since the medicine causes dizziness as well as nauseau, I think it best to wait. No, I do not want to have a stroke! Trust me, if it gets worse, they can remove the sutures at the hospital.
Dilemmas and chaos are a part of everyday life, just once I wish it were something other than medical chaos. But then agsin without all this my life just might be utterly dull. :-)
So here I sit, propped on the couch, resting for a bit. Maybe the Powers that be will favor me with a nap ;-)
"The early bird gets the worm." We heard it regularly while Mom was bravely attempting to get us up for school. Or her gentle reminders to not be late.
I'm changing the saying just a little today. The early bird gets sleepy too fast.
My nightly ritual lately is:
All quiet until I lay down for the night. Then as if by magical hour, the cough finds its way home. Not the chronic rejection cough, the thyroid pressing on the trachea cough. The cough that repeats over and over, "I'm gonna make you wish you could breathe and make me stop, but you can't".
Last night it started early. I was sitting in the recliner, and Wham! I finally got things relatively calm but noticed it had triggered A-Fib. This was about 8PM. Gotta love the feel when your heart jumps from 52 beats per minute to 118. I mean all those darned butterflies are flapping their wings in complete unison trying to break out of my chest.
I gave my heart the allotted time to correct itself, to no avail and got my Metoprolol. Now I admit, I detest taking this and resist at all cost. It slows me way down, makes me dizzy and nauseous.
Hoping to sleep the effects off, I went o bed.
Yes my old friend the cough came too. When it finally calmed to let me sleep, my kidneys decided they wanted the night shift. I was up every hour...grrrrrrr
I finally waved a white flag of surrender and got up at 3:30. My heart rate is down, but not where it should be. Anothe dose of Metoprolol might do it, but not until later. 12 hours per dose, would be 9AM. But I have a 9:30 Doctor appointment for suture removal and since the medicine causes dizziness as well as nauseau, I think it best to wait. No, I do not want to have a stroke! Trust me, if it gets worse, they can remove the sutures at the hospital.
Dilemmas and chaos are a part of everyday life, just once I wish it were something other than medical chaos. But then agsin without all this my life just might be utterly dull. :-)
So here I sit, propped on the couch, resting for a bit. Maybe the Powers that be will favor me with a nap ;-)
Thursday, January 23, 2014
Changes
New year always brings change. Resolutions would be the first to come to mind. I've had changes more akin to upheavals.
First was the departure of my lung transplant physician and my Coordinator his wife. I'm still getting used to this. It's difficult to trust another doctor , when this one has kept me alive for 12 years.
I've been working with my Endocrinologist for the last year , watching my thyroid enlarge while my Hemoglobin dropped. Even kidney transplant is concerned.
I've been patiently waiting for my appointment on Monday. We are so close to a resolution. So , tonight I get a call from his office. Today was his last day. *huge sigh*. I am stuck in a country song. "Here I go again. "
Grinning. .... at least I had a nice dinner at Olive Garden beforehand.
First was the departure of my lung transplant physician and my Coordinator his wife. I'm still getting used to this. It's difficult to trust another doctor , when this one has kept me alive for 12 years.
I've been working with my Endocrinologist for the last year , watching my thyroid enlarge while my Hemoglobin dropped. Even kidney transplant is concerned.
I've been patiently waiting for my appointment on Monday. We are so close to a resolution. So , tonight I get a call from his office. Today was his last day. *huge sigh*. I am stuck in a country song. "Here I go again. "
Grinning. .... at least I had a nice dinner at Olive Garden beforehand.
Tuesday, January 14, 2014
Retinal issues .
If you've been following my blog, you may remember a few years ago I had a retinal occlusion in my left eye that was hemorraging. I got shots in that eye and to this day still feel reminiscent that I was somehow auditioning to be a victim on the show "Criminal Minds".
I stress with each check up I'll once again hear "you need another shot". Today was another reprieve, however the EpiRetinal membrane has gotten a little bigger. These membranes eventually cover the retina and vision is distorted, blurred, and eventually lost. Surgery can remove the membrane, but my specialist feels I wouldn't have a "marked" improvement. So I chose to wait until it would be a marked improvement in my vision.
Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea. This could also be another reason for my coughing until I choke. More 5o come on that as I know.
You may be thinking "what else?" Believe me, I've asked myself that before too.
When I say my health care is a full time job, I mean it !
BUT. .. I am still here. I am still fighting. I still have alot to give.
I knew 24 years ago, and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen, no wheelchair, and the ability to breathe make this journey more than worth it.
Remember to always be thankful for what you have- good, bad, or otherwise for the alternative for me was to not be here at all to experience this life.
Grab life with both hands, stand strong and hold on tight. It's gonna be one helluva great ride !
I stress with each check up I'll once again hear "you need another shot". Today was another reprieve, however the EpiRetinal membrane has gotten a little bigger. These membranes eventually cover the retina and vision is distorted, blurred, and eventually lost. Surgery can remove the membrane, but my specialist feels I wouldn't have a "marked" improvement. So I chose to wait until it would be a marked improvement in my vision.
Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea. This could also be another reason for my coughing until I choke. More 5o come on that as I know.
You may be thinking "what else?" Believe me, I've asked myself that before too.
When I say my health care is a full time job, I mean it !
BUT. .. I am still here. I am still fighting. I still have alot to give.
I knew 24 years ago, and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen, no wheelchair, and the ability to breathe make this journey more than worth it.
Remember to always be thankful for what you have- good, bad, or otherwise for the alternative for me was to not be here at all to experience this life.
Grab life with both hands, stand strong and hold on tight. It's gonna be one helluva great ride !
Saturday, January 11, 2014
Wishes And Blessings
How many times have we all wished for something ordinary.
"I wish the dishes were done before I get home. " Or "I wish for a bit of quiet" . Now, remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.
That is me this morning.
As many of you know, my cough keeps me awake both day and night so naps are rarely achieved with rest. Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive. Having a desire to sleep on your back is One thing, being forced to is another. Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".
Among my simple wishes , topping the list are:
1. A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.
I have many simple wishes, but sleep has to top the list. Sleep refreshes us in mind, body and spirit.
Last night for the first time in a few years, my 2 simple wishes came true! Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee, but I intend to wallow in my good fortune for as long as possible. Oh! And I forgot the best part! I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.
I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world. Finally... :-)
Have a refreshed day and don't take your simple pleasures for granted. ♥
"I wish the dishes were done before I get home. " Or "I wish for a bit of quiet" . Now, remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.
That is me this morning.
As many of you know, my cough keeps me awake both day and night so naps are rarely achieved with rest. Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive. Having a desire to sleep on your back is One thing, being forced to is another. Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".
Among my simple wishes , topping the list are:
1. A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.
I have many simple wishes, but sleep has to top the list. Sleep refreshes us in mind, body and spirit.
Last night for the first time in a few years, my 2 simple wishes came true! Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee, but I intend to wallow in my good fortune for as long as possible. Oh! And I forgot the best part! I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.
I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world. Finally... :-)
Have a refreshed day and don't take your simple pleasures for granted. ♥
Saturday, January 4, 2014
Decisions
After receiving disheartening news in December, I posted the news on Facebook.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing. This time I was feeling great, and got a less than favorable prognosis.
Lung transplant dropped the chronic rejection bomb, while I discovered my paperwork also showed stage 2 kidney disease from kidney transplant.
After posting my thoughts on FB, I got many responses. Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly. tge response was "I've been in stage 3 for years". Replying about a lung transplant
It was stage 2 kidney disease, scary in itself being a kidney recipient.
However a first time lung transplant has the possibility of being relisted. Me, having had 2 already my chance is next to nil for another.
I'm not being nit picky, merely to set the record straight. I remember my years of chronic rejection, and the fast downward spiral. I have no wish to go there again, though I knew it would one day happen I don't miss the nose wedgies and bloody noses from oxygen. My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.
Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.
Or the realization that my life is slipping away. It is pure hell having an active mind in a daily weakening body.
Which is why I posted my life on my terms.
I am slowly rebuilding my endurance, no small feat with a negative reserve of energy. Let alone the breath.
I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing. This time I was feeling great, and got a less than favorable prognosis.
Lung transplant dropped the chronic rejection bomb, while I discovered my paperwork also showed stage 2 kidney disease from kidney transplant.
After posting my thoughts on FB, I got many responses. Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly. tge response was "I've been in stage 3 for years". Replying about a lung transplant
It was stage 2 kidney disease, scary in itself being a kidney recipient.
However a first time lung transplant has the possibility of being relisted. Me, having had 2 already my chance is next to nil for another.
I'm not being nit picky, merely to set the record straight. I remember my years of chronic rejection, and the fast downward spiral. I have no wish to go there again, though I knew it would one day happen I don't miss the nose wedgies and bloody noses from oxygen. My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.
Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.
Or the realization that my life is slipping away. It is pure hell having an active mind in a daily weakening body.
Which is why I posted my life on my terms.
I am slowly rebuilding my endurance, no small feat with a negative reserve of energy. Let alone the breath.
I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.
Thursday, November 7, 2013
Early Mornings
I remember my Parents alway saying "the early bird catches the worm "_ but they didn't get up repeatedly all night with a cough.
And here I sit my friends, awake and drinking coffee at 3:30 AM -coughing. In all fairness to my cough, it woke me an hour ago, I merely tried to ignore it in the vain hope it would go away.
No such luck.
Those wonderful REM times when our bodies get rejuvenated from that deep sleep, not gonna happen. Not here, not now. Today will bea day of trudging in a zombie like state, feeding myself fuel to keep going, until I can get home and collapse.
Now I'm not complaining ! I knew all this could happen 24 years ago, when discovering there was a chance I couls live longer. I have endured worse, much worse. And if I am truthful I will 3ndure worse again, before this is all over. So I am so very grateful that I am still here experiencing everything life has given me, plus all the Blessings yet to come.
And that is today's lesson..... be thankful for everything in your life. Good, bad, & other wise. Smile through the bad, laugh at the otherwise, and truly enjoy the good. For therein lie the memories that will help you sail tthrough life :)
Back to my coffee, my book on the Civil War, and hopefully an early morning nap.
Havea wonderful day today -good, bad or otherwise, it is YOUR. Day.
And here I sit my friends, awake and drinking coffee at 3:30 AM -coughing. In all fairness to my cough, it woke me an hour ago, I merely tried to ignore it in the vain hope it would go away.
No such luck.
Those wonderful REM times when our bodies get rejuvenated from that deep sleep, not gonna happen. Not here, not now. Today will bea day of trudging in a zombie like state, feeding myself fuel to keep going, until I can get home and collapse.
Now I'm not complaining ! I knew all this could happen 24 years ago, when discovering there was a chance I couls live longer. I have endured worse, much worse. And if I am truthful I will 3ndure worse again, before this is all over. So I am so very grateful that I am still here experiencing everything life has given me, plus all the Blessings yet to come.
And that is today's lesson..... be thankful for everything in your life. Good, bad, & other wise. Smile through the bad, laugh at the otherwise, and truly enjoy the good. For therein lie the memories that will help you sail tthrough life :)
Back to my coffee, my book on the Civil War, and hopefully an early morning nap.
Havea wonderful day today -good, bad or otherwise, it is YOUR. Day.
Thursday, October 24, 2013
My New Life 10/23/1991
The rest of the story on that fateful night is:
My Air Ambulance arrived in Pittsburgh with a very worried Doctor onboard. The customs officials had taken so much of the precious time I needed to make my "transplant window", that we landed at the airport at the exact time I was supposed to be on the table -open - and ready for new lungs..
More delays ....
I still hear the ambulance wail as we made our way to the hospital.
In the ER the Anesthesiologist and a Transplant Coordiantor were waiting for me. I found out that the surgeons were "harvesting" the organs in another city. Yes, back then they used the term harvesting, I know it's different now. More politically correct, but this is my story and this is how it happened.
As I lay on the stretcher we chatted away about non-essential topics. We then went into telling jokes.
I spied the curtain moving, the Anesthesiologist changed facial expressions and looked down at me.
"Ready to go?" Excitedly, "Is it a go?" "It's a go, they're on their way back" " Let's get this show on the road !" "Well, you have to tell me the punch line before I can put you under ?"
And that is how I went into a life saving lung transplant. Telling jokes.. If we cannot laugh through our troubles - we will cry hysterically until we destroy ourselves.
Many have been astonished that I did not ask for "Last Rites" just in case. Honestly, the thought never occured to me. I'd had 18 months to think, and get my life right with God. I felt this was all in His hands as he guided the surgeons, nurses and finally gave that torch to me. I thought and still do think, that I am in a win-win situation.. If I was allowed to live, I had more time with family, friends and making memories. If I did not live, I was going home, no more oxygen, struggling to breathe, fatigue, I would be whole again ! Who could argue with those odds?
The next thing I remember is waking up on October 25th.. and that is an adventure in itself...
My Air Ambulance arrived in Pittsburgh with a very worried Doctor onboard. The customs officials had taken so much of the precious time I needed to make my "transplant window", that we landed at the airport at the exact time I was supposed to be on the table -open - and ready for new lungs..
More delays ....
I still hear the ambulance wail as we made our way to the hospital.
In the ER the Anesthesiologist and a Transplant Coordiantor were waiting for me. I found out that the surgeons were "harvesting" the organs in another city. Yes, back then they used the term harvesting, I know it's different now. More politically correct, but this is my story and this is how it happened.
As I lay on the stretcher we chatted away about non-essential topics. We then went into telling jokes.
I spied the curtain moving, the Anesthesiologist changed facial expressions and looked down at me.
"Ready to go?" Excitedly, "Is it a go?" "It's a go, they're on their way back" " Let's get this show on the road !" "Well, you have to tell me the punch line before I can put you under ?"
And that is how I went into a life saving lung transplant. Telling jokes.. If we cannot laugh through our troubles - we will cry hysterically until we destroy ourselves.
Many have been astonished that I did not ask for "Last Rites" just in case. Honestly, the thought never occured to me. I'd had 18 months to think, and get my life right with God. I felt this was all in His hands as he guided the surgeons, nurses and finally gave that torch to me. I thought and still do think, that I am in a win-win situation.. If I was allowed to live, I had more time with family, friends and making memories. If I did not live, I was going home, no more oxygen, struggling to breathe, fatigue, I would be whole again ! Who could argue with those odds?
The next thing I remember is waking up on October 25th.. and that is an adventure in itself...
Wednesday, October 23, 2013
22 Years Ago Today
Looking back it's hard to believe it's been 22 years !
The time was 12:08 AM and I was called to the phone. I heard a familiar voice ask, "How would you like to go out of town?" My reply was well I am actually, I'm going to St Augustine for a few days to regenerate.
"NO, I mean how would you like to come north, to Pittsburgh?"
Oh my Goodness ! My world stopped turning, I looked at my Mom and mouthed "transplant".
I called the Air Ambulance and started repacking my clothes. The Air Ambulance company called to say a plane would arrive in 4 hours. This will not do ! I had a 4 hour window to before the lungs could no longer be used ! They were paid extra to have a plane waiting in Alabama, but they were sending one from Texas. He assured me the the pilots would be in the air soon. Having worked dispatch for a major carrier, I knew this was not true.. I quickly advised him: 1. The pilots have to get there . 2. They have to do a pre-flight check and get fuel. 3. Check the weather 4. It was a 3 hour flight from Texas to Florida AND 5. Another 2 hour flight to Pittsburgh.
Thoroughly disappointed I called my Coordinator back and told him the news. He said not to worry, UPMC had a small jet that had just cleared customs and was in Tampa. It was coming to get me. !!! YAY!!!!
When I called the Air Ambulance back, he was angry. "What is the tail number?" You don't need that information. "When is it arriving?" Sooner than you can ! All red flags to me at the time. Little did I know those red flags would soon show themselves for the mean spirited creatures they were.
We went to the FBO (fixed base operator) area of the airport. This is where private planes arrive. As we were sitting there, 3 customs officials strolled in. Red Flag alert ! I whispered "They better not be after my plane !" My plane was taxiin up and they walked outside. They received an anonymous tip that this plane had never cleared customs ! I was right ! The Doctor onboard as well as the pilot tried many times to explain the importance of getting off the ground NOW ! No -go , these idiots were playing with my life ! They would not release the plane until all the medical equipment was broken down and inspected for contraband.. Let's be serious !! The Dr. offered to let one of them fly to Pittsburgh with us, and then take it all apart,and they would fly him back home. I needed those machines to live during the flight.. "NOPE"
I'd had enough. I asked for a quarter. "I'm calling the local news. It's a matter of life and death and this time it happens to be mine !" I called the local station, told a brief story of what customs was attempting. I also stated that if I did not make this lung transplant my death would be on their heads ! It was no more than 5 minutes later I heard a supervisor over the radio " Who the hell called the news!" The officials looked at me and I smiled prettily and help up the phone receiver :) "Get that damned plane out of here !"
And that my friends is how my new life began... I came out fighting and still fight !!
The time was 12:08 AM and I was called to the phone. I heard a familiar voice ask, "How would you like to go out of town?" My reply was well I am actually, I'm going to St Augustine for a few days to regenerate.
"NO, I mean how would you like to come north, to Pittsburgh?"
Oh my Goodness ! My world stopped turning, I looked at my Mom and mouthed "transplant".
I called the Air Ambulance and started repacking my clothes. The Air Ambulance company called to say a plane would arrive in 4 hours. This will not do ! I had a 4 hour window to before the lungs could no longer be used ! They were paid extra to have a plane waiting in Alabama, but they were sending one from Texas. He assured me the the pilots would be in the air soon. Having worked dispatch for a major carrier, I knew this was not true.. I quickly advised him: 1. The pilots have to get there . 2. They have to do a pre-flight check and get fuel. 3. Check the weather 4. It was a 3 hour flight from Texas to Florida AND 5. Another 2 hour flight to Pittsburgh.
Thoroughly disappointed I called my Coordinator back and told him the news. He said not to worry, UPMC had a small jet that had just cleared customs and was in Tampa. It was coming to get me. !!! YAY!!!!
When I called the Air Ambulance back, he was angry. "What is the tail number?" You don't need that information. "When is it arriving?" Sooner than you can ! All red flags to me at the time. Little did I know those red flags would soon show themselves for the mean spirited creatures they were.
We went to the FBO (fixed base operator) area of the airport. This is where private planes arrive. As we were sitting there, 3 customs officials strolled in. Red Flag alert ! I whispered "They better not be after my plane !" My plane was taxiin up and they walked outside. They received an anonymous tip that this plane had never cleared customs ! I was right ! The Doctor onboard as well as the pilot tried many times to explain the importance of getting off the ground NOW ! No -go , these idiots were playing with my life ! They would not release the plane until all the medical equipment was broken down and inspected for contraband.. Let's be serious !! The Dr. offered to let one of them fly to Pittsburgh with us, and then take it all apart,and they would fly him back home. I needed those machines to live during the flight.. "NOPE"
I'd had enough. I asked for a quarter. "I'm calling the local news. It's a matter of life and death and this time it happens to be mine !" I called the local station, told a brief story of what customs was attempting. I also stated that if I did not make this lung transplant my death would be on their heads ! It was no more than 5 minutes later I heard a supervisor over the radio " Who the hell called the news!" The officials looked at me and I smiled prettily and help up the phone receiver :) "Get that damned plane out of here !"
And that my friends is how my new life began... I came out fighting and still fight !!
Friday, August 16, 2013
Changes in Latitudes does not negate a Change In Attitude
A situation happened this morning that got me thinking.....
As I was waiting at the drive thru to get my boys a morning sandwich, the car in front of me was ordering a small coffee. When he was cheerfully given the total, he yelled "When the ^%$# did that go up?"
I was patiently behind him thinking "here we go again" . Then almost instantly I hear "senior coffee ! senior coffee ! senior coffee! Jesus Christ!" My eyes popped open wide, my jaw dropped and I thought where did manners go? If you have such an issue walk inside. Or better yetk, brew your coffee at home ! I did tell the poor girl who was the brunt of his tirade, she had my permission to "slap him silly" which made her smile .
Now I am normally one to walk inside, but since my boys ( furry ones) were with me I chose the drive thru. This restaurant is known for the longest drive thru with the inside being completely empty. Cars had even blocked the turn lane from the highway waiting for the drive thru.. Now I may be wrong, but that is lack of consideration and , yes manners. Not to mention illegal too.
I live in an area that is considered "seasonal". This means that senior citizens or snowbirds come here for 6 months out of the year and go home for 6 months. I have noticed that the older population can be a .. well bit cantankerous. This in turn makes me wonder, what it is about aging that makes some feel they can be rude to others. Is it childish regression? Or is it a right of passage? Whichever it is, it is now being spread to the younger generations as well. I do give the benefit of the doubt to many with the realization of what Alzheimers can do to ones personality, many others no way.
In High School I worked in the hospital and sometimes saw this "anger" in the disabled. Now this was before I was diagnosed with all my issues, but it still gave me thoughts. The main thought that we all have 2 choices in life.
1. We can either be angry at the world, and thus making everyone glad we're gone.
2. We can try our best to cheer others up and make their day, thus they be sad we're gone.
How would you like to be remembered?
If we're in a bad mood, what right do we have to ruin anothers day? Why can't we do or say something nice to help them smile and lift our moods as well..
The choice is yours...
Have a great day ! :-)
As I was waiting at the drive thru to get my boys a morning sandwich, the car in front of me was ordering a small coffee. When he was cheerfully given the total, he yelled "When the ^%$# did that go up?"
I was patiently behind him thinking "here we go again" . Then almost instantly I hear "senior coffee ! senior coffee ! senior coffee! Jesus Christ!" My eyes popped open wide, my jaw dropped and I thought where did manners go? If you have such an issue walk inside. Or better yetk, brew your coffee at home ! I did tell the poor girl who was the brunt of his tirade, she had my permission to "slap him silly" which made her smile .
Now I am normally one to walk inside, but since my boys ( furry ones) were with me I chose the drive thru. This restaurant is known for the longest drive thru with the inside being completely empty. Cars had even blocked the turn lane from the highway waiting for the drive thru.. Now I may be wrong, but that is lack of consideration and , yes manners. Not to mention illegal too.
I live in an area that is considered "seasonal". This means that senior citizens or snowbirds come here for 6 months out of the year and go home for 6 months. I have noticed that the older population can be a .. well bit cantankerous. This in turn makes me wonder, what it is about aging that makes some feel they can be rude to others. Is it childish regression? Or is it a right of passage? Whichever it is, it is now being spread to the younger generations as well. I do give the benefit of the doubt to many with the realization of what Alzheimers can do to ones personality, many others no way.
In High School I worked in the hospital and sometimes saw this "anger" in the disabled. Now this was before I was diagnosed with all my issues, but it still gave me thoughts. The main thought that we all have 2 choices in life.
1. We can either be angry at the world, and thus making everyone glad we're gone.
2. We can try our best to cheer others up and make their day, thus they be sad we're gone.
How would you like to be remembered?
If we're in a bad mood, what right do we have to ruin anothers day? Why can't we do or say something nice to help them smile and lift our moods as well..
The choice is yours...
Have a great day ! :-)
Friday, April 26, 2013
Sooner Than Expected
1:30AM and the morning person is up earlier than she'd like to be.
One of the protocols at my transplant center is if your temperature is 100 or above they must be called. As I looked at the thermometer yesterday in trepidation I knew what I had to do. The cough is wreaking havoc and the temperature is up, sinking feeling in the pit of my stomach I picked up the phone.
It's times like this I'm quickly reminded I am not a normal healthy person, something a chronically ill or physically disabled person longs to be with every fiber of their being. In day to day life, I can sometimes push it to the back of my memory, to be hidden far away from reality.
During the call I was given the choice of coming to the hospital or starting antibiotics again. With it being a 4 hr drive one way, I seriously did not feel well enough to drive and Larry was at work. I chose the antibiotics, though a hospital stay and giving this Pseudomonas a strong kick to the curb is appealing. So I waited all day, not that I felt like going anywhere, meds delivered, nurse accessed my port -here I go again.
With this happening more frequently I can't help but wonder if this is the start of "the long painful road home ". I vividly remember the first time I started that journey. Many times I said, " chronic rejection was leagues worse than my original disease. Not that I have chronic rejection again, but one bad lung can make life miserable at times. With PPH I was short of breath, now I can't stop this painful deep cough. I'm reminded of a scene in "The YaYa Sisterhood" where a line is " you made me think I was gonna cough up a lung " I was offended by it and they way they parodied those on oxygen, but it's the one line I seem to remember.
I still have to make that long drive on Monday, with an overnight bag just in case. (I haven't had to do that in 8 years!)
Fingers crossed, no admission.
Drat! I forgot to ask if I could take Tylenol!
One of the protocols at my transplant center is if your temperature is 100 or above they must be called. As I looked at the thermometer yesterday in trepidation I knew what I had to do. The cough is wreaking havoc and the temperature is up, sinking feeling in the pit of my stomach I picked up the phone.
It's times like this I'm quickly reminded I am not a normal healthy person, something a chronically ill or physically disabled person longs to be with every fiber of their being. In day to day life, I can sometimes push it to the back of my memory, to be hidden far away from reality.
During the call I was given the choice of coming to the hospital or starting antibiotics again. With it being a 4 hr drive one way, I seriously did not feel well enough to drive and Larry was at work. I chose the antibiotics, though a hospital stay and giving this Pseudomonas a strong kick to the curb is appealing. So I waited all day, not that I felt like going anywhere, meds delivered, nurse accessed my port -here I go again.
With this happening more frequently I can't help but wonder if this is the start of "the long painful road home ". I vividly remember the first time I started that journey. Many times I said, " chronic rejection was leagues worse than my original disease. Not that I have chronic rejection again, but one bad lung can make life miserable at times. With PPH I was short of breath, now I can't stop this painful deep cough. I'm reminded of a scene in "The YaYa Sisterhood" where a line is " you made me think I was gonna cough up a lung " I was offended by it and they way they parodied those on oxygen, but it's the one line I seem to remember.
I still have to make that long drive on Monday, with an overnight bag just in case. (I haven't had to do that in 8 years!)
Fingers crossed, no admission.
Drat! I forgot to ask if I could take Tylenol!
Saturday, April 20, 2013
Blessed sleep
Remember I mentioned previously how refreshing a good nights sleep is? You wake up in the morning , stretch, and happily breathe in the start of a new day.
I've had one week without that dastardly cough waking me repeatedly during the night. The cough suppressants by the bed have been happily ignored! One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright, if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.
Well, the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places. My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking. Like an excited friend returning from the vacation of a lifetime, it has not stopped speaking since .
This does give me serious thought. Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!
7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe? Me neither. Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations, but will always return to our job.
Yawning, I lean back in my recliner and hope to get a 20 minute power nap - game on me vs cough.
I've had one week without that dastardly cough waking me repeatedly during the night. The cough suppressants by the bed have been happily ignored! One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright, if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.
Well, the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places. My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking. Like an excited friend returning from the vacation of a lifetime, it has not stopped speaking since .
This does give me serious thought. Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!
7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe? Me neither. Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations, but will always return to our job.
Yawning, I lean back in my recliner and hope to get a 20 minute power nap - game on me vs cough.
Tuesday, April 16, 2013
Journey Part One
The exercise has been going well. Sunday I opted for walking around the Sharks Tooth Festival instead of the treadmill. Granted the cinnamon glazed, strawberry topped funnel cake did nothing for my cause :) But was it ever good !
I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization. I am weak. The time for getting serious has long been waiting.
I know the strength training is crucial. Especially since my transplant cocktail includes the dreaded Prednisone! (Holds fingers in the shape of a cross and gives a hiss) Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though. It loves to slowly chip away at bones and muscle, so strength training is important. My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head* I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better! Have you ever had that tiny pill stick to your tongue? Or worse, the roof of your mouth? OMG! Nothing gets rid of that taste!
Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :) but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!" I'll up my water intake and see if it helps. If not, at least I won't be dehydrated-but possibly feel like the Titanic. ;)
Errands today and orders to finish and water to drink, my day is planned. Hope yours is happy and productive too.
I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization. I am weak. The time for getting serious has long been waiting.
I know the strength training is crucial. Especially since my transplant cocktail includes the dreaded Prednisone! (Holds fingers in the shape of a cross and gives a hiss) Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though. It loves to slowly chip away at bones and muscle, so strength training is important. My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head* I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better! Have you ever had that tiny pill stick to your tongue? Or worse, the roof of your mouth? OMG! Nothing gets rid of that taste!
Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :) but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!" I'll up my water intake and see if it helps. If not, at least I won't be dehydrated-but possibly feel like the Titanic. ;)
Errands today and orders to finish and water to drink, my day is planned. Hope yours is happy and productive too.
Sunday, April 14, 2013
A Slow Journey
As a kid I always heard you have to put one foot in front of the other before you can get anywhere. Meaning you must take that first step.
Having mentally psyched myself up all day Friday to hop on that fiery steed (treadmill) & ride into battle, I did just that after the evening walk with the boys. Dreading the plantar fasceitis pain in the morning I was determined to try again. Plus I was hoping to regain that blissful sleep I longed for from released endorphins.
Nook ready I began my walk. Was this only 2.5 mph? I was walking that post transplant. Wow! I realized my endurance and stamina had taken a seriously long vacation and left me to pick up the pieces. Armed with a good book, I walked 30 minutes. All the while reminding myself I used to hit 90 and reset the timer.
I jumped the first hurdle ! Now to continue! Day 2 I rode my stationary bike, which is like taking a spear to the knees, but I jumped that too ! I took my IV out yesterday so now I'm looking at the multi-station gym with squinty eyes hoping to scare it into submission.
It's taken a longtime to get here, so the climb out will be too. But, to keep honoring my donors and their families, it is a mental must for me.
Having mentally psyched myself up all day Friday to hop on that fiery steed (treadmill) & ride into battle, I did just that after the evening walk with the boys. Dreading the plantar fasceitis pain in the morning I was determined to try again. Plus I was hoping to regain that blissful sleep I longed for from released endorphins.
Nook ready I began my walk. Was this only 2.5 mph? I was walking that post transplant. Wow! I realized my endurance and stamina had taken a seriously long vacation and left me to pick up the pieces. Armed with a good book, I walked 30 minutes. All the while reminding myself I used to hit 90 and reset the timer.
I jumped the first hurdle ! Now to continue! Day 2 I rode my stationary bike, which is like taking a spear to the knees, but I jumped that too ! I took my IV out yesterday so now I'm looking at the multi-station gym with squinty eyes hoping to scare it into submission.
It's taken a longtime to get here, so the climb out will be too. But, to keep honoring my donors and their families, it is a mental must for me.
Tuesday, April 9, 2013
Finding Myself
I am once again sitting upright in my recliner (since 2AM) with the boys trying to yet again stop coughing. My lack of sleep does give me a bit of thinking time.
Looking back I seem to have left "me" somewhere. I can just see myself at a roadside rest stop patiently waiting for me to come to the rescue.
I always had such determination, where has it gone ? My health has always been my health#1priority, but now I'm just tired.
I realize it's a culmination of events, and finding a way to jump the hurdle. 2002 was my 2nd lung transplant, giving me Blessed freedom from oxygen. But I came home from the hospital knowing I would need a new kidney.
November 2004 I got the fistula placed in my upper right arm in case of dialysis (which was looming on the horizon. ). Taking 6 months to heal and "cure" put a dent in my exercise routine.
Just as it healed, May 2005 I got a new kidney!
My right abdomen groaned with each step.... no treadmill..
Many of my meds to protect my kidneys were now stopped, which created that heart disease rearing to be noticed. I got a pacemaker. No lifting, exercising, etc for awhile. Then came SVT ....and heart ablation. Again no exercise.
What followed through the years was a series of at home IV infusions for Pseudomonas in my right (old transplant) lung, ending with spending 9 months taking Levacquin 750 mg & Keflex 500 mg daily. Both causing insomnia to the point I thought I was dreaming I was awake !
2012 was a bad year. Picc line for more antibiotics, plus more Levacquin (wonder if I glow neon in the dark yet ). Then a port to make IV's easier. And just when I thought it was now MY time here comes Keratoacanthoma and 3 months wait to have it removed. That is healed and in the past-so guess what is visiting now?
Most of my days are spent in a routine.
1. drink a bottle of water fast and hug the porcelain throne hoping to bring all this gunk out of my right lung, so I don't cough continually all day long. And it's one of these gut wrenching coughs, causing teary eyes and abdonimal muscle cramps.
If I don't get it loose and away, it blocks my airways and at times making me gasp for air and choke. It doesn't help my biggest fear is suffocating. Not a good feeling to wake from a nice, peaceful REM sleep to gasping the rest of the night.
The loss of my lil Dibs has created another chasm to jump. My lil guy has been with me through it all, on my lap or laying next to me. 8 weeks and it feels like forever. I tear up just trying to type his name :(
So here I sit, close to 5AM now, thinking how to reclaim Me again..
My middle man cuddled up close (a first, making me smile), I take a sip of lukewarm coffee, 30 minutes and my morning IV will be ready to start. I 'll trudge to the counter, holding my left side-diverticulitis has chosen to pay me a visit, grab the syringes and IV and start my day.
Looking back I seem to have left "me" somewhere. I can just see myself at a roadside rest stop patiently waiting for me to come to the rescue.
I always had such determination, where has it gone ? My health has always been my health#1priority, but now I'm just tired.
I realize it's a culmination of events, and finding a way to jump the hurdle. 2002 was my 2nd lung transplant, giving me Blessed freedom from oxygen. But I came home from the hospital knowing I would need a new kidney.
November 2004 I got the fistula placed in my upper right arm in case of dialysis (which was looming on the horizon. ). Taking 6 months to heal and "cure" put a dent in my exercise routine.
Just as it healed, May 2005 I got a new kidney!
My right abdomen groaned with each step.... no treadmill..
Many of my meds to protect my kidneys were now stopped, which created that heart disease rearing to be noticed. I got a pacemaker. No lifting, exercising, etc for awhile. Then came SVT ....and heart ablation. Again no exercise.
What followed through the years was a series of at home IV infusions for Pseudomonas in my right (old transplant) lung, ending with spending 9 months taking Levacquin 750 mg & Keflex 500 mg daily. Both causing insomnia to the point I thought I was dreaming I was awake !
2012 was a bad year. Picc line for more antibiotics, plus more Levacquin (wonder if I glow neon in the dark yet ). Then a port to make IV's easier. And just when I thought it was now MY time here comes Keratoacanthoma and 3 months wait to have it removed. That is healed and in the past-so guess what is visiting now?
Most of my days are spent in a routine.
1. drink a bottle of water fast and hug the porcelain throne hoping to bring all this gunk out of my right lung, so I don't cough continually all day long. And it's one of these gut wrenching coughs, causing teary eyes and abdonimal muscle cramps.
If I don't get it loose and away, it blocks my airways and at times making me gasp for air and choke. It doesn't help my biggest fear is suffocating. Not a good feeling to wake from a nice, peaceful REM sleep to gasping the rest of the night.
The loss of my lil Dibs has created another chasm to jump. My lil guy has been with me through it all, on my lap or laying next to me. 8 weeks and it feels like forever. I tear up just trying to type his name :(
So here I sit, close to 5AM now, thinking how to reclaim Me again..
My middle man cuddled up close (a first, making me smile), I take a sip of lukewarm coffee, 30 minutes and my morning IV will be ready to start. I 'll trudge to the counter, holding my left side-diverticulitis has chosen to pay me a visit, grab the syringes and IV and start my day.
Thursday, March 7, 2013
Keratoacanthoma part 2
I finally got it removed and am stitched quite well.
Once I got in to see the Plastic Surgeon, he took one look and said "This has to come off now" Yeah no kidding?? By then, the only way I can describe it is a medium sized mushroom cap, only disgusting looking. I kept it covered so my skin was already red and raw from the adhesive for 3 months.
I did however get creative with ways to wear a bandage :)
Here is the end result of the surgery:
I had no idea a medium mushroom cap would create such a spectacle ! When I left after surgery I was taped from one shoulder to the other and half way up my neck ! Sure makes looking to the side difficult, I still am unable to look up for eye drops or mouthwash. I dreaded removing the outer bandage the next day- but so wanted a shower ! He said the skin will eventually stretch to accommodate.
He also mentioned having to pull skin down from my neck and up from my chest to close the incision. I believe it , especially when I try to move. A few of the sutures were removed this week, but the anchor sutures have to wait another 2 more. It has made putting on a shirt a new experience, as well as a shirt has to button down the front so the scar isn't irritated. I honestly don't want others to have to see it, but oh well.
I'm dreaming of the day when I can again sleep on my side (the back side gets sore) and not itch !
Moral to the story: If you have a whitehead appear mysteriously overnight- GET it checked out !!
Once I got in to see the Plastic Surgeon, he took one look and said "This has to come off now" Yeah no kidding?? By then, the only way I can describe it is a medium sized mushroom cap, only disgusting looking. I kept it covered so my skin was already red and raw from the adhesive for 3 months.
I did however get creative with ways to wear a bandage :)
I had no idea a medium mushroom cap would create such a spectacle ! When I left after surgery I was taped from one shoulder to the other and half way up my neck ! Sure makes looking to the side difficult, I still am unable to look up for eye drops or mouthwash. I dreaded removing the outer bandage the next day- but so wanted a shower ! He said the skin will eventually stretch to accommodate.
He also mentioned having to pull skin down from my neck and up from my chest to close the incision. I believe it , especially when I try to move. A few of the sutures were removed this week, but the anchor sutures have to wait another 2 more. It has made putting on a shirt a new experience, as well as a shirt has to button down the front so the scar isn't irritated. I honestly don't want others to have to see it, but oh well.
I'm dreaming of the day when I can again sleep on my side (the back side gets sore) and not itch !
Moral to the story: If you have a whitehead appear mysteriously overnight- GET it checked out !!
Saturday, January 19, 2013
Keratoacanthoma
What a long word to try an pronounce !
This is my latest diagnosis from the Dermatologist. A few months ago I had a small "whitehead" appear on the left side of my chest. Being just above where you'd place your hand to say the Pledge of Allegiance and very visible, I did what anyone would do. I popped it. It bled, and bled, and bled.
So it was covered with a band-aid for another few weeks. Yes, I did take it off and change it nightly.
While away for the Christmas holiday, as I was changing the bandage I looked in horror ! This small unnoticeable whitehead (not to me) was now the size of a nickel and it looked infected. ! With my medical history and not healing well this past year I began to worry- plus it itches like hell . I kept it covered and out of the sun, and quickly made an appointment to see the Dermatologist when I got home.
My worst fears were realized. It was not infected, and she proceeded to rattle off that name. She removed the top for biopsy and referred me to a Plastic Surgeon. Her reasoning being that if it isn't removed completely it will get larger and spread. Oh great ! Just what I always wanted on my chest ...
Plus with my system immuno -compromised it's best to err on the side of caution.
My appointment with her was 2 weeks ago and it is now the size of a quarter and distinctly raised above the skin. Now to you a nickel or quarter may not be large. Put one on your chest and look in a mirror. See what I mean?
From what I've read this normally doesn't affect the chest area, so I'm curious if all my x-rays over the years for my lung transplants may have increased the possibilities in me.
My first appointment with the Plastic Surgeon isn't until the middle of February, so I sit and wait and wonder how large it will be by then.. Oh, and how in the heck will it be removed.
This is my latest diagnosis from the Dermatologist. A few months ago I had a small "whitehead" appear on the left side of my chest. Being just above where you'd place your hand to say the Pledge of Allegiance and very visible, I did what anyone would do. I popped it. It bled, and bled, and bled.
So it was covered with a band-aid for another few weeks. Yes, I did take it off and change it nightly.
While away for the Christmas holiday, as I was changing the bandage I looked in horror ! This small unnoticeable whitehead (not to me) was now the size of a nickel and it looked infected. ! With my medical history and not healing well this past year I began to worry- plus it itches like hell . I kept it covered and out of the sun, and quickly made an appointment to see the Dermatologist when I got home.
My worst fears were realized. It was not infected, and she proceeded to rattle off that name. She removed the top for biopsy and referred me to a Plastic Surgeon. Her reasoning being that if it isn't removed completely it will get larger and spread. Oh great ! Just what I always wanted on my chest ...
Plus with my system immuno -compromised it's best to err on the side of caution.
My appointment with her was 2 weeks ago and it is now the size of a quarter and distinctly raised above the skin. Now to you a nickel or quarter may not be large. Put one on your chest and look in a mirror. See what I mean?
From what I've read this normally doesn't affect the chest area, so I'm curious if all my x-rays over the years for my lung transplants may have increased the possibilities in me.
My first appointment with the Plastic Surgeon isn't until the middle of February, so I sit and wait and wonder how large it will be by then.. Oh, and how in the heck will it be removed.
Tuesday, January 15, 2013
Updates and Decisions
well.. the picc line was taken out and a Port now rests (cattywompus) on the right side of my chest. I have to get it flushed monthly. Our great Medicare system does not cover it, so my cost is $90 .
In anger I researched this and found the needle sells to these companies for $5.60 each.. Makes ya sick doesn't it?
Then with the hemorrhage in my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ??? I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.
I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses. Whew!
In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue. Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..
I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.
I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy. I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen! I need to find that person again !
I need to reclaim me !
In anger I researched this and found the needle sells to these companies for $5.60 each.. Makes ya sick doesn't it?
Then with the hemorrhage in my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ??? I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.
I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses. Whew!
In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue. Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..
I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.
I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy. I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen! I need to find that person again !
I need to reclaim me !
Wednesday, June 20, 2012
New Hardware
I wondered a few days ago just how much hardware a body can handle before the software gives up.
This is a photo of my morning and evening routine:
This is a photo of my morning and evening routine:
On the left you see the IV meds I take and on the right the 2 nebulizer treatments .
Now this may not seem like much to you, however upon waking my routine is weight (yuck), blood pressure, temperature, heart rate, pft's, and blood sugar and logging it all in on an Excel spreadsheet. Then
Then round one of meds, breakfast, morning walk with boys, then round 2 of meds- then all the above before getting ready for work.
This is the picc line for the IV's that I wrap after the treatment so it isn't seen at work:
Yeah it hurt and itches like hell, but it's something I need for now. On Friday it comes out and I get a port in my upper right shoulder. Left is already full -a Pacemaker is strategically parked there. They told me the port would hurt about as much as the pacer being put in.. great.. SO that's why the Rx of Oxy..
Along with all this is the emotional ( I dread to consider the financial) aspect too. That is the part not many see. I'm still remaining positive and refuse any negativity in my life.
And thanks to wonderful -fantabulous friends on FaceBook I'm making it with laughter!
This post was starting out vastly different, then I spoke to a few of those wonderful friends and they had me laughing like a banshee!
Moral to the story:
The software can handle the hardware as long as it has wonderful caring friends and family.
Have you told your friends how special they are today??
Maybe you should
Saturday, June 9, 2012
Listen to those "bad vibes"
My bad feeling about Larry leaving for work came true.. And darned if I wasn't reading a book about just that- trusting in those little vibes you get.
After a high temperature (100.6) on Tuesday I was told to be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare. I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began: 6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste of grapes in their mouth. This tastes nothing like that ! trust me
Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day! Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks.. And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!
So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover I'm on the last bar and in the red ! great and 4 hours to drive home! I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all. I sat in a McDonalds parking lot in the rain on the phone- starving.
I got a picc line again... :( I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line. and it itches like a MADMAN !
So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay. I am too exhausted and tired to even consider what this will do to the part D "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.
Since Colistin is not an approved Medicare drug, I shudder to think of its cost. But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.
On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion, 4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel. Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me. I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature. They let me ! I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead! Never have I slept that much or that soundly!
I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted. I will be in continual healing mode this summer :) But I will be here for the summer (and beyond) THAT is the key.;
Time for an IV!!!
After a high temperature (100.6) on Tuesday I was told to be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare. I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began: 6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste of grapes in their mouth. This tastes nothing like that ! trust me
Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day! Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks.. And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!
So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover I'm on the last bar and in the red ! great and 4 hours to drive home! I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all. I sat in a McDonalds parking lot in the rain on the phone- starving.
I got a picc line again... :( I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line. and it itches like a MADMAN !
So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay. I am too exhausted and tired to even consider what this will do to the part D "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.
Since Colistin is not an approved Medicare drug, I shudder to think of its cost. But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.
On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion, 4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel. Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me. I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature. They let me ! I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead! Never have I slept that much or that soundly!
I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted. I will be in continual healing mode this summer :) But I will be here for the summer (and beyond) THAT is the key.;
Time for an IV!!!
Tuesday, May 29, 2012
"STOP the world I want off ! "
Have you ever had one of those days where you want to throw your hands up and just scream.. Stop the world I want off.. Or for you Trekkies -Beam me up Scotty!
I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples, to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance. I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.
Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired. I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.
I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples, to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance. I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.
Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired. I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.
Saturday, May 5, 2012
Cinco De Mayo
To many of you Cinco de Mayo refers to the Commemoration of the Mexican Army's 1862 victory over the French in the Battle of Puebla in the Franco-Mexican War.
To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant.
I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?
I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.
I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.
Today is melancholy and yet happy. Today is my celebration, while Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page and see her picture and read a little about her too. We have alot of similarities in our lives.
Are you an Organ Donor ? The life you could save might be one you love.. ♥
Recycle yourself.. Become an Organ and Tissue Donor
To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant.
I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?
I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.
I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.
Today is melancholy and yet happy. Today is my celebration, while Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page and see her picture and read a little about her too. We have alot of similarities in our lives.
Are you an Organ Donor ? The life you could save might be one you love.. ♥
Recycle yourself.. Become an Organ and Tissue Donor
Tuesday, January 24, 2012
Another Day At The Office
I've been noticing this grey spot right in the center of my vision in my left eye. I didn't think much about it since my eye Dr. mentioned I had floaters. I knew when my atrial fib was acting up sometimes the vision in that eye got a sort of aura when I tried to look at things.
Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.
Great... but just another medical issue to add to my "Medical Resume" The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may not go away..
No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.
Now to warn a few Dr's what to expect tomorrow!!
Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.
Great... but just another medical issue to add to my "Medical Resume" The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may not go away..
No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.
Now to warn a few Dr's what to expect tomorrow!!
Sunday, October 23, 2011
Today is the First Day of The Rest OF My Life
How many times have we all said that ? A more apt question is: How many times have we actually understood the meaning of that sentence and carried it out?
Every time I hear those words I wonder. Today I am 20 years old. Well , in all truthfulness it is the 20th anniversary of my first lung transplant- or my Lungiversary.
On this day 20 years ago my life as I knew it changed forever! I remember waking up in SICU on a respirator. Major panic! I had never been on a respirator before in my life, and honestly never considered this might happen to me. I remember after 3 days them attempting to remove the respirator, only to have my new lungs fill with fluid. Now I've always been the type you simply do NOT touch my nose! The nurse did try to prepare me for the placing of a tube down my nose into my lungs. To my defense this was after little cooperation from her with regards to telling a person heavily medicated on pain meds to "hold your mask up so you get oxygen" My addled mind kept trying to tele -communicate to her that I couldn't get the strap around my head. The rest is history. I woke up back on a respirator (most depressing day) and later was told - laughingly by my Dr. that as the nurse touched my nose with the tube, I punched her and tried to run away dragging machines and all. He said he had no idea that a person as sick as I was had that much strength.
Every time I hear those words I wonder. Today I am 20 years old. Well , in all truthfulness it is the 20th anniversary of my first lung transplant- or my Lungiversary.
On this day 20 years ago my life as I knew it changed forever! I remember waking up in SICU on a respirator. Major panic! I had never been on a respirator before in my life, and honestly never considered this might happen to me. I remember after 3 days them attempting to remove the respirator, only to have my new lungs fill with fluid. Now I've always been the type you simply do NOT touch my nose! The nurse did try to prepare me for the placing of a tube down my nose into my lungs. To my defense this was after little cooperation from her with regards to telling a person heavily medicated on pain meds to "hold your mask up so you get oxygen" My addled mind kept trying to tele -communicate to her that I couldn't get the strap around my head. The rest is history. I woke up back on a respirator (most depressing day) and later was told - laughingly by my Dr. that as the nurse touched my nose with the tube, I punched her and tried to run away dragging machines and all. He said he had no idea that a person as sick as I was had that much strength.
This was me on October 24, 1991. Not my best pre-birthday photo. But I got the best present anyone could ever ask for. I lived. I was so swollen from the Prednisone and massive amounts of immunosuppression that my family barely recognized me. If you've never been intubated, believe me it is nothing like you see on the TV medical dramas. Either that or my drug induced foggy mind developed one horror story photo for me to remember the day they pulled that tube out.
After a few more days of trying to get my lungs to work, they removed this yet again. My Dr. sat on the edge of my bed calmly telling me that I may end up back here. Not everyone gets to stay out. All the time I was thinking "Not me! No way! This fella has no idea who he's dealing with!" I left and never looked back.
I later found out that my family was told the lungs I received had been badly damaged in the accident, but as my lungs were already removed and I was at the point of no return they put in the donated lungs. There was a strong chance I would be back on a respirator awaiting a re- transplant. I knew I was a strong person, but I began to realize just how strong I truly was, mentally and emotionally.
Yes there were pitfalls. I had a serious bout of rejection that I slept through (thankfully) . The Dr mentioned to my Daddy he may want to say an extra prayer because at that time it was all up to God. Thankfully He still considers me a work in progress with alot more work left to do here. I did come out of that episode with my sat's at 100% and stayed that way.
All I know of my donor was she was 34 years old, a white female, she died in a tragic accident, and we were a perfect match. It was all up to me to keep what she gave me so unselfishly healthy and live my life as if I were dying. Every moment to the fullest!
So.. the next time you say, Today is the First Day of the Rest of MY Life will you live it differently?
Saturday, October 22, 2011
October 22,1991
It was on this day, 20 years ago I received a call that changed my life forever.
The time was 11:00 PM. While not usually a night owl, I was awake. I was packing clothes for a much anticipated weekend trip to Orlando. Arrangements had already been made to have oxygen waiting at the hotel. I had been waiting for a lung transplant for 18 months. Each passing day reminded me I was on borrowed time, after being given 12 months to live. I desperately needed time away from reality for awhile. Each day feeling myself get weaker and requiring more oxygen.
I remember Mom calling me to the phone. It was my pre-transplant coordinator asking how I was feeling and if I wanted to make an out of town trip. My standard reply was, of course I'm leaving for Orlando. "Wouldn't you rather come to Pittsburgh?" " We have a pair of lungs for you." It was at this point I wanted to hope, drop to my knees and pray, but I knew to not get excited. I could get all the way there and it be a dry run. Meaning the lungs weren't viable after they got in to get them out of the donor.
After hanging up the phone, I immediately called the Air Ambulance that was supposed to be on standby in Alabama only to find it was not in Alabama but in Texas. This simply would not do. After the pilots got in- the plane fueled and preflight done- the flight alone would be close to 2 -2 1/2 hours. This would put me over the time frame to receive a transplant. I only had a window of 4 hours to get the Pittsburgh, and be sitting for the go ahead from the retrieval team. Thankfully UPMC had a plane sitting in Tampa that had just returned from taking a recipient back home. I called the original company to cancel and began to get suspicious, he did not need to know where my aircraft was coming from nor did he need the tail number of the plane.
We arrived at the FBO ( private flight area) and began to wait. Suddenly 3 customs officials came walking in. I whispered they better not be after my damned plane! They were! Seems they received an anonymous tip that this particular plane had not cleared customs after returning from the Virgin Islands. It had as it was sitting in Tampa. The trauma nurse and pilot both tried negotiating with customs to no avail. They were determined to break down ALL the machines I would need to keep me alive during the flight. The pilot offered to have one of them fly with us to Pittsburgh, tear everything apart upon landing and he would fly him home- we received a negative response to this suggestion too.
I was slowly watching my chance at life slip through my fingers. I made a decision. I asked for a quarter. I went to the pay phone (yes there were still around) and called the local news station. I chose one that loves stories like this. I spoke with the news desk and mentioned it was a matter of life or death. When the gentleman asked who's I said mine! I told him customs would not release my air ambulance for me to receive a lung transplant and there was a slim chance I'd ever get a call again. Within minutes, we heard over one of the customs officials radios "Who the hell called channel 4 !" They looked at us and I sweetly smiled, raising my hand and replied "Guilty"
However it worked we were on our way! I must say that was the longest - most thought provoking flight of my life. Flying through the clouds and reflecting on my life. As we landed it was a rush to get me to the hospital. You see, I was supposed to be opened up and ready for new lungs at 5AM and we had just landed at 5AM.It was a mad dash in an ambulance!
As we were awaiting for the official "go" I was sharing jokes with the anesthesiologist in the ER.
Suddenly one of the physicians looked at me and asked " Are you ready?" I replied " Is it a go ????" wide eyed and hopeful.. He smiled the most gorgeous smile ever - and said "It sure is"
And I was wheeled into the operating room on the biggest adventure of my life!
Monday, October 17, 2011
Never forget where you came from
As this is the beginning of a very special week for me, I wanted to take a little time and reflect back on a few important times in my life. My parents always said "Never forget where you came from, this is what shaped your life". So as I near a 20 year milestone with my first lung transplant, I wanted to share with you (never seen before on the web) a few photos over the next few days of how I came to be the person I am.
If you look very closely at this photo, the person in the middle is me. I was in my late 20's .You may also notice that I was on oxygen, my feet using the canister as a foot stool. In this photo I was already on the waiting list for a heart/ bi lateral lung transplant. I always wore my hair in a long braid because it kept getting tangled in the strap for my oxygen when I carried it. I remember when I got all my hair cut off , because the thought of 3 months in a hospital with long hair wasn't appealing. Can you believe no one noticed for a few days! Everyone was so used to seeing my hair pulled back, they never considered that me- the one who swore to Never have short hair again had cut it all off.
Even on oxygen I refused to give in. I walked everyday, even if I did not feel like it. Braving the neighborhood dogs who always seemed to have the fence gates left open. What did it matter? I had seen jaws. I had oxygen. All I needed was a way to set it off right ? :)
I have never forgotten these times. I promised to honor my donor each and everyday and live my life to the fullest to honor her a woman I never knew. She was 34 and we were a perfect match. She also died as the result of a major accident. I used to cry thinking that at her age she must have had small children at home who would never know Mommy. But it is also my deepest hope that they were also told stories of her bravery and how she saved the lives of many!
Saturday, October 1, 2011
We never know
This afternoon as I was cleaning out my Xterra from today's show our Mail man arrived with the mail. I walked out to meet him, and asked how he was doing. He and his wife live just down the street, so we've gotten to know each other pretty well.
Imagine my surprise when he replied, not too well. Now this is a man who is always chipper and positive. My heart literally broke when he told me today was his first day back in a month. His wife had passed away. She was only 44 years old.
They recently found out she had an enlarged heart and her Doctor was trying to get it under control. She passed away suddenly of Congestive Heart Failure. I've had this blue funk cloud over my evening after hearing the news.
This has brought back many memories for me as well. As a teenager I was a CHF patient. When I hear of anyone suffering from CHF I empathize as I remember how I felt all the times I struggled to get mine under control. For years I randomly coughed blood and we never knew why. It was discovered when I was 17 that the pressure inside my heart and lungs was 6 times higher than it should be. This high pressure was causing my blood vessels to bust and I was literally drowning in my own blood. Not everyone has this same issue with CHF.. Most retain fluid and take diuretics to control the fluid retention. Symptoms are swollen feet, ankles, hands, etc. I was always one of those lucky people that it never showed , asypmtomatic. That is until it was at a critical stage.
At one point I remember driving myself to the ER only to discover it was CHF rearing it's ugly head again. Note to self- Do not driver yourself to the hospital at 3AM and then call to ask your parents if they can come and get you. Or at least hold the phone very far from your ears. Lesson learned.. Call Mom & Daddy first.
Please take a moment to remind yourself that not all health defects show themselves, and give that stranger a smile or a helping hand. It may just make their day..And please say a little prayer for my Mail man Tim to help him through this rough time..
Imagine my surprise when he replied, not too well. Now this is a man who is always chipper and positive. My heart literally broke when he told me today was his first day back in a month. His wife had passed away. She was only 44 years old.
They recently found out she had an enlarged heart and her Doctor was trying to get it under control. She passed away suddenly of Congestive Heart Failure. I've had this blue funk cloud over my evening after hearing the news.
This has brought back many memories for me as well. As a teenager I was a CHF patient. When I hear of anyone suffering from CHF I empathize as I remember how I felt all the times I struggled to get mine under control. For years I randomly coughed blood and we never knew why. It was discovered when I was 17 that the pressure inside my heart and lungs was 6 times higher than it should be. This high pressure was causing my blood vessels to bust and I was literally drowning in my own blood. Not everyone has this same issue with CHF.. Most retain fluid and take diuretics to control the fluid retention. Symptoms are swollen feet, ankles, hands, etc. I was always one of those lucky people that it never showed , asypmtomatic. That is until it was at a critical stage.
At one point I remember driving myself to the ER only to discover it was CHF rearing it's ugly head again. Note to self- Do not driver yourself to the hospital at 3AM and then call to ask your parents if they can come and get you. Or at least hold the phone very far from your ears. Lesson learned.. Call Mom & Daddy first.
Please take a moment to remind yourself that not all health defects show themselves, and give that stranger a smile or a helping hand. It may just make their day..And please say a little prayer for my Mail man Tim to help him through this rough time..
Monday, September 26, 2011
To Blog or Not ToBlog
I've recently heard from a few of you that I haven't blogged in awhile. Looking at my last post, I would have to agree. I want to thank you for being my reminder, and giving me something to truly think about these past few days.
I've discovered that lately when I don't feel well, I tend to retreat into myself as opposed to putting it out there in cyberspace. I mean, why put my misery off you right? Though it isn't really misery, we long-termers have learned to just keep going no matter what. There is always a "good day" right around the corner.
Before the days of Facebook and social media, I kept a journal. I was obsessively diligent in writing my daily thoughts and actions each night. This journaling literally saved my life, not only emotionally, but medically. Each time I open one particular journal (this one I keep handy) I am vividly reminded of that time 12 years ago. I remember what I endured medically, how I felt each day with my strength and life slowly ebbing away. But mostly I remember how I wrote about it, and how it made me stronger mentally to carry on.
Now, today we have blogging. So my decision is to write about my bad days as well as my good or remain quiet. My Reader's Digest (condensed) version is this:
The last few months have been a trial with new developments medically. I've had enough ct scans, and labs to keep me happy for another decade! I trudge through all these new aches and pains with a vengeance.
However, inside is that nagging thought, "will this be one of those "bad years"?" If you have severe medical issues you know what I mean. I live in dread of another winter like the one I endured in 2007/2008 which carried over to 2009. Actually I am still paying for that time too. These past months have brought about more "not so good days" than good days. I refuse to believe they are bad days yet, I haven't hit the worst day I've ever had on a scale of 1-10.
Through all this, my lung function is stable and remains the same. Plus my kidney function is great too. I am determined to keep these 2 organs in top condition as long as I possibly can, these are a cherished Gift. I am confident these other aches and pains are merely the aging process, and I will accept and conquer these like a champ. After all if not for 3 graciously generous families I would never have been given the chance to conquer the aging process .
I've discovered that lately when I don't feel well, I tend to retreat into myself as opposed to putting it out there in cyberspace. I mean, why put my misery off you right? Though it isn't really misery, we long-termers have learned to just keep going no matter what. There is always a "good day" right around the corner.
Before the days of Facebook and social media, I kept a journal. I was obsessively diligent in writing my daily thoughts and actions each night. This journaling literally saved my life, not only emotionally, but medically. Each time I open one particular journal (this one I keep handy) I am vividly reminded of that time 12 years ago. I remember what I endured medically, how I felt each day with my strength and life slowly ebbing away. But mostly I remember how I wrote about it, and how it made me stronger mentally to carry on.
Now, today we have blogging. So my decision is to write about my bad days as well as my good or remain quiet. My Reader's Digest (condensed) version is this:
The last few months have been a trial with new developments medically. I've had enough ct scans, and labs to keep me happy for another decade! I trudge through all these new aches and pains with a vengeance.
However, inside is that nagging thought, "will this be one of those "bad years"?" If you have severe medical issues you know what I mean. I live in dread of another winter like the one I endured in 2007/2008 which carried over to 2009. Actually I am still paying for that time too. These past months have brought about more "not so good days" than good days. I refuse to believe they are bad days yet, I haven't hit the worst day I've ever had on a scale of 1-10.
Through all this, my lung function is stable and remains the same. Plus my kidney function is great too. I am determined to keep these 2 organs in top condition as long as I possibly can, these are a cherished Gift. I am confident these other aches and pains are merely the aging process, and I will accept and conquer these like a champ. After all if not for 3 graciously generous families I would never have been given the chance to conquer the aging process .
Thursday, July 28, 2011
Dilemmas and Bucket Loads
Many of us feel overwhelmed in our daily lives at one point or another. I am no different. I've been facing a small dilemma of whether to blog about issues I'm facing or keep quiet. On one hand, if I blog I hope it does not change the mind of someone who is awaiting that precious Gift Of Life- an organ transplant. However. on the other hand it just may strike a chord in someone facing a similar issue and help them feel they are not alone.
I've been a little absent not only here but also on my FaceBook fan page, mainly due to the fact that my energy level for quite some time has seemed non-existent. Of course, I did have to treat the lower left corner of my lip for pre- skin cancer, which in itself was no fun. A person never truly realizes how much actually touches your lips until it burns at the point of contact.. Oh and brushing your teeth- well that was a major feat of gymnastics!. I'm an avid brusher, so I decided to bite the bullet and deal with the pain until I could get the toothpaste washed off.
On a good note, I am still off Insulin.. YAY!!! My blood sugars are in range and I've even had a few lows. My HgbA1c was 5.3 at my last visit so the endocrinologist is ecstatic. Why I stressed over telling him I was off insulin amazes me.
I have however been having alot of pain. At first this was attributed to muscle and joint pain-but we now suspect that my Thyroid may have something to do with it also. I felt extremely stylish with an ace bandage wrapped around my ankle for 4 days! They found my thyroid to be enlarged and with cysts all over it via a sonogram. After the official reading we'll make a game plan. Adding to that, me the person who greets each day with a devilish grin and "hits the ground running" has lost her "get up and go" . Oh,I still greet each day with a devilish grin, but the energy level seems to be on vacation. This is completely not my style, so I am conducting an extensive search to find which tropical island my energy fairy has gone to. No more Pina coladas on the beach- honey time to come home!
And this week has brought on a new development. Remember how good it feels to stretch when you wake up? Oh..me to... Since Monday each morning I stretch it triggers my a-fib rapid heart rate.. No fun and it totally ruins that wonderful stretchy feeling.. I'm now taking extra meds for this-lucky me.. Just more to add to those little boxes to remind myself. I promised my cardiologist I'd call him if these "episodes" became more frequent than say.. 1-2 times a month. Think this falls into that category? I've had ablation for one form now I guess my heart is lonely and making itself known..
I also know that these transplants won't last forever-but- this is not that time- trust me. ( evil grin)
I've been a little absent not only here but also on my FaceBook fan page, mainly due to the fact that my energy level for quite some time has seemed non-existent. Of course, I did have to treat the lower left corner of my lip for pre- skin cancer, which in itself was no fun. A person never truly realizes how much actually touches your lips until it burns at the point of contact.. Oh and brushing your teeth- well that was a major feat of gymnastics!. I'm an avid brusher, so I decided to bite the bullet and deal with the pain until I could get the toothpaste washed off.
On a good note, I am still off Insulin.. YAY!!! My blood sugars are in range and I've even had a few lows. My HgbA1c was 5.3 at my last visit so the endocrinologist is ecstatic. Why I stressed over telling him I was off insulin amazes me.
I have however been having alot of pain. At first this was attributed to muscle and joint pain-but we now suspect that my Thyroid may have something to do with it also. I felt extremely stylish with an ace bandage wrapped around my ankle for 4 days! They found my thyroid to be enlarged and with cysts all over it via a sonogram. After the official reading we'll make a game plan. Adding to that, me the person who greets each day with a devilish grin and "hits the ground running" has lost her "get up and go" . Oh,I still greet each day with a devilish grin, but the energy level seems to be on vacation. This is completely not my style, so I am conducting an extensive search to find which tropical island my energy fairy has gone to. No more Pina coladas on the beach- honey time to come home!
And this week has brought on a new development. Remember how good it feels to stretch when you wake up? Oh..me to... Since Monday each morning I stretch it triggers my a-fib rapid heart rate.. No fun and it totally ruins that wonderful stretchy feeling.. I'm now taking extra meds for this-lucky me.. Just more to add to those little boxes to remind myself. I promised my cardiologist I'd call him if these "episodes" became more frequent than say.. 1-2 times a month. Think this falls into that category? I've had ablation for one form now I guess my heart is lonely and making itself known..
I also know that these transplants won't last forever-but- this is not that time- trust me. ( evil grin)
Friday, June 24, 2011
Have you heard about Rock Scar Love Designs?
While surfing through FaceBook I found this great page celebrating organ transplant recipients with the coolest T-shirts for us ever! You can find it at Rock Scar Love .
This is a company founded by a transplant recipient- for all recipients to celebrate their scars and all that goes with them. Now you may think it wrong for someone to make money off our scars- but I wholeheartedly applaud this venture, mainly because it fills a void in promoting awareness. We can actually wear ladies tank tops or t-shirts with great sayings, plus more items to purchase.
She is active in the transplant community as well. I've ordered my shirts and will wear them proudly. After all, as you've heard me say before "I had to die to get these battle scars".
This I "borrowed" from their page:
ock Scar Love is a modern, trend setting clothing company focused on helping individuals with physical, mental and emotional scars to embrace the lessons they represent We believe that scars are sexy and when embraced they can only change lives for the positive. We look to provide sexy scar owners a way to tell their story and inspire others to live passionate lives.
Our corporate slogan of “You choose” is the heart of human existence … do our lives define us or do we define our lives? Each human is given struggles in life. Our experiences are our loads to bear…our defining moments. Do they define us or do we define them? We can all choose to either use our experiences to empower us and make us amazing individuals, or to use them as an excuse for why we can’t do something. Everyone has the capability to choose to live every day, every hour and every moment with passion; to change the aspects of their lives that make them unhappy. RockScar Love Designs challenges fans to take their life struggles and use them as a stepping stone to greatness.
Tshirt, women’s tanks, burnout tees or accessories…we have a way for you to rock your scar with love!
There is currently a giveaway on their page for a great tank top. Please check it out and enter! giveaway
This is a company founded by a transplant recipient- for all recipients to celebrate their scars and all that goes with them. Now you may think it wrong for someone to make money off our scars- but I wholeheartedly applaud this venture, mainly because it fills a void in promoting awareness. We can actually wear ladies tank tops or t-shirts with great sayings, plus more items to purchase.
She is active in the transplant community as well. I've ordered my shirts and will wear them proudly. After all, as you've heard me say before "I had to die to get these battle scars".
This I "borrowed" from their page:
Mission
ock Scar Love is a modern, trend setting clothing company focused on helping individuals with physical, mental and emotional scars to embrace the lessons they represent We believe that scars are sexy and when embraced they can only change lives for the positive. We look to provide sexy scar owners a way to tell their story and inspire others to live passionate lives.Our corporate slogan of “You choose” is the heart of human existence … do our lives define us or do we define our lives? Each human is given struggles in life. Our experiences are our loads to bear…our defining moments. Do they define us or do we define them? We can all choose to either use our experiences to empower us and make us amazing individuals, or to use them as an excuse for why we can’t do something. Everyone has the capability to choose to live every day, every hour and every moment with passion; to change the aspects of their lives that make them unhappy. RockScar Love Designs challenges fans to take their life struggles and use them as a stepping stone to greatness.
Tshirt, women’s tanks, burnout tees or accessories…we have a way for you to rock your scar with love!
There is currently a giveaway on their page for a great tank top. Please check it out and enter! giveaway
Friday, June 3, 2011
Caustic or Costic???
Like my new word?
Caustic is what this medicine is doing to my lip.
Costic is when I saw the price I paid vs the retail price.
I will never understand why pharmaceutical companies can't make small tubes of medication as opposed to larger ones that end up being thrown away. I mean geez, I have a 2mm spot on my lip that I use a Q-tip to put this medication on for 2 weeks tops. And the smallest they make is 30gram tubes. Do they expect us to use it all over or what?
Well, this is the second day and my lip looks pinkish and severely chapped. I am having withdrawal symptoms from Chapstick. You can't use it while using this medication. I can us Vaseline -but my tubes are so lonely there on the shelf and Vaseline doesn't last as long either.
I've had an additional situation and not sure if it's separate or aggravated by this medicine.
My heart has been racing like the wind since yesterday. Got it calmed down yesterday evening only to have it start again this morning. I'm sure all will calm down eventually.
I got alot of sleep last night and feel much better.
So, to take my walks I need a bandaid on the area (feat of the impossible) and a hat. I tried a hat yesterday and for the life of me couldn't figure out how it will protect my lip with the Florida sun. No matter how I situated the hat it just did not shadow my face. It was a big straw hat -totally me- with rhinestone dolphins and jewels all over the brim.. My beach day hat. I opted for my baseball cap and walked with my head down.. I'm sure the neighbors thought I was insane or something.
Today we have to wait for it to cool off. Little DB would never make it in this 90 degree heat. I usually carry him most of the way at night-but he does much better if we wait.
We'll see how this crusty lip looks in the morning!
Caustic is what this medicine is doing to my lip.
Costic is when I saw the price I paid vs the retail price.
I will never understand why pharmaceutical companies can't make small tubes of medication as opposed to larger ones that end up being thrown away. I mean geez, I have a 2mm spot on my lip that I use a Q-tip to put this medication on for 2 weeks tops. And the smallest they make is 30gram tubes. Do they expect us to use it all over or what?
Well, this is the second day and my lip looks pinkish and severely chapped. I am having withdrawal symptoms from Chapstick. You can't use it while using this medication. I can us Vaseline -but my tubes are so lonely there on the shelf and Vaseline doesn't last as long either.
I've had an additional situation and not sure if it's separate or aggravated by this medicine.
My heart has been racing like the wind since yesterday. Got it calmed down yesterday evening only to have it start again this morning. I'm sure all will calm down eventually.
I got alot of sleep last night and feel much better.
So, to take my walks I need a bandaid on the area (feat of the impossible) and a hat. I tried a hat yesterday and for the life of me couldn't figure out how it will protect my lip with the Florida sun. No matter how I situated the hat it just did not shadow my face. It was a big straw hat -totally me- with rhinestone dolphins and jewels all over the brim.. My beach day hat. I opted for my baseball cap and walked with my head down.. I'm sure the neighbors thought I was insane or something.
Today we have to wait for it to cool off. Little DB would never make it in this 90 degree heat. I usually carry him most of the way at night-but he does much better if we wait.
We'll see how this crusty lip looks in the morning!
Wednesday, June 1, 2011
Upheavals and Understanding
While it's been awhile since my last post, I have thought about finding a moment to sit and blog.
Update:
I'm still off Insulin. Will let my doctor know at my appointment this month.
I got the INR machine to test my own anti-coagulant level. It's fast and simple, just like checking my blood sugar. But it does save driving to Venice to the Doctor to have it done.
My Dermatologist did a biopsy on the lower left side of my lip last week. I've had chronic chapped lips for eons and joke that Chapstick and Carmex should send me a profit sharing check. Well, after a severe bout of stomach virus with a high temperature, my lip looked terrible. Plus it happened at appointment time. She didn't like it nor did she like the fact that it hasn't healed in 2 years.
I am not ashamed to say, I almost passed out in her office. My stomach still had fully recovered and I was queasy anyway. You know it takes us transplants much longer to get back to "normal" than the healthy. So I waited a week and got the results yesterday.
It came back as pre-cancerous and she called in a cream prescription. After talking to her nurse and my pharmacist I am dreading using this cream. She said it would make the area look like road rash. NOT a good visual in my eyes. I was joking with the pharmacist and he stated that was a nice way to describe what it'll do. His closing comment mentioned raw meat... Great ! just what I want others to see when they look at me.
I asked him how I am supposed to eat with my lip like that? "Smoothies" I suggest Smoothie King on 41.
Now we were joking through all this-but I know he was serious.
This brings up alot of questions living in Florida. Can I still take my morning and afternoon walks? Sure - put a large bandaid over the affected area. Have you honestly tried to put much less keep a bandaid on the lower left corner of YOUR lip?The dermatologist put one there after the biopsy and it stayed all of 30 minutes. It was worse than trying to drink water after leaving the dentist! I was also told I need to wear a hat on my walks. Hmmmm.
I asked why can't it be cut out and forget it? The pharmacist replied "But you don't want this scar on your lip". "Well, it would add to my Pirate persona -plus just think I'd be a hit at the Medieval Fair and not need make up~!" He thinks I'm insane anyway, so we both got a good laugh.
I just had another thought . How do I apply it? I can't use my finger-it'll get road rash too right?
Oh the joys of life are fruitful and many!
This I too will conquer!
Update:
I'm still off Insulin. Will let my doctor know at my appointment this month.
I got the INR machine to test my own anti-coagulant level. It's fast and simple, just like checking my blood sugar. But it does save driving to Venice to the Doctor to have it done.
My Dermatologist did a biopsy on the lower left side of my lip last week. I've had chronic chapped lips for eons and joke that Chapstick and Carmex should send me a profit sharing check. Well, after a severe bout of stomach virus with a high temperature, my lip looked terrible. Plus it happened at appointment time. She didn't like it nor did she like the fact that it hasn't healed in 2 years.
I am not ashamed to say, I almost passed out in her office. My stomach still had fully recovered and I was queasy anyway. You know it takes us transplants much longer to get back to "normal" than the healthy. So I waited a week and got the results yesterday.
It came back as pre-cancerous and she called in a cream prescription. After talking to her nurse and my pharmacist I am dreading using this cream. She said it would make the area look like road rash. NOT a good visual in my eyes. I was joking with the pharmacist and he stated that was a nice way to describe what it'll do. His closing comment mentioned raw meat... Great ! just what I want others to see when they look at me.
I asked him how I am supposed to eat with my lip like that? "Smoothies" I suggest Smoothie King on 41.
Now we were joking through all this-but I know he was serious.
This brings up alot of questions living in Florida. Can I still take my morning and afternoon walks? Sure - put a large bandaid over the affected area. Have you honestly tried to put much less keep a bandaid on the lower left corner of YOUR lip?The dermatologist put one there after the biopsy and it stayed all of 30 minutes. It was worse than trying to drink water after leaving the dentist! I was also told I need to wear a hat on my walks. Hmmmm.
I asked why can't it be cut out and forget it? The pharmacist replied "But you don't want this scar on your lip". "Well, it would add to my Pirate persona -plus just think I'd be a hit at the Medieval Fair and not need make up~!" He thinks I'm insane anyway, so we both got a good laugh.
I just had another thought . How do I apply it? I can't use my finger-it'll get road rash too right?
Oh the joys of life are fruitful and many!
This I too will conquer!
Thursday, May 5, 2011
Cinco De Mayo !!!!!
This day six years ago was one of the luckiest days of my life!
You see, on May 5, 2005 yep, 05/05/05 ( gotta be lucky) I received my kidney transplant.. To make it more coincidental my surgeons name was Dr. Foley! Those of you not around medical issues probably wouldn't understand the humor.The relation of Dr. Foley and "foley catheters " was not lost on me.
********** So ..... today I am 6 years old **********
I get to run, play , jump on the bed to my hearts content1 I'm a kid again!!!!
But none of this would be possible without the gracious Gift of Life from my donor Susie Paxton. There were a myriad of coincidences that year.. My Donor Dad had removed dear Susie from life support on her birthday May 3,2005- and graciously gave me a true Gift on May 5, 2005. I lost my Daddy on June 3, 2005 and he was 30 days from his birthday on July 3,2005. I wrote an anonymous letter to my donor family one year later and through a few letters I finally spoke with Ron Paxton who I now call my Donor Dad.
Life throws us many curve balls, but it is true that when one door closes a window opens.. I discovered that Susie and me had many similarities with very different outcomes. I owe her and Donor Dad my life. For you see if not for the kidney transplant eventually the lung transplant and the rest of my health would have gone into a steady decline.
If you have a moment, please visit my "honor page" and meet Susie... She is a true gift to all !
You see, on May 5, 2005 yep, 05/05/05 ( gotta be lucky) I received my kidney transplant.. To make it more coincidental my surgeons name was Dr. Foley! Those of you not around medical issues probably wouldn't understand the humor.The relation of Dr. Foley and "foley catheters " was not lost on me.
********** So ..... today I am 6 years old **********
I get to run, play , jump on the bed to my hearts content1 I'm a kid again!!!!
But none of this would be possible without the gracious Gift of Life from my donor Susie Paxton. There were a myriad of coincidences that year.. My Donor Dad had removed dear Susie from life support on her birthday May 3,2005- and graciously gave me a true Gift on May 5, 2005. I lost my Daddy on June 3, 2005 and he was 30 days from his birthday on July 3,2005. I wrote an anonymous letter to my donor family one year later and through a few letters I finally spoke with Ron Paxton who I now call my Donor Dad.
Life throws us many curve balls, but it is true that when one door closes a window opens.. I discovered that Susie and me had many similarities with very different outcomes. I owe her and Donor Dad my life. For you see if not for the kidney transplant eventually the lung transplant and the rest of my health would have gone into a steady decline.
If you have a moment, please visit my "honor page" and meet Susie... She is a true gift to all !
Wednesday, April 27, 2011
Insulin - Day how many?
It seems to have gone by so fast and yet I'm still insulin free. Yes, I have exercised more (YAY) and yes I am watching what I eat. However, I no longer have that constant stress of worrying about my blood sugar dropping unexpectedly. The churning feeling is gone and I actually was able to feel & hear hunger rumbling in my stomach! Yes I waited until I was actually hungry to make sure I could still feel it :)
This past week has had me watching my health in other areas as well. My INR test for coumadin last Thursday showed an astoundingly thin blood level for me.. #7-no wonder I have bruises everywhere! Scared the Dr's office so bad I was told "Don't get cut-don't get a scratch" I mean come on, I have 3 dogs.. Where do they think the bruises came from??? Today it read at 1.4 which is great-but to them too low. They want it between 2-3 and my lung transplant team want it 1-2.. Gonna let them hash it out.. Just another pull to deal with between physicians.
With the heavy tree pollen content around here I've also had a drop in my home spiromerty. I called and the decision was to take 40mg Prednisone (the bane of my existence) for 4 days ... There goes the blood sugar control.. It may put me back on insulin for the duration to keep it stable.
So far today I haven't needed it-but do have the Novolog sitting on ready just in case.
Will find out the blood sugar at dinnertime..If you hear a loud screaming "NOooooooo" it's only me..
This past week has had me watching my health in other areas as well. My INR test for coumadin last Thursday showed an astoundingly thin blood level for me.. #7-no wonder I have bruises everywhere! Scared the Dr's office so bad I was told "Don't get cut-don't get a scratch" I mean come on, I have 3 dogs.. Where do they think the bruises came from??? Today it read at 1.4 which is great-but to them too low. They want it between 2-3 and my lung transplant team want it 1-2.. Gonna let them hash it out.. Just another pull to deal with between physicians.
With the heavy tree pollen content around here I've also had a drop in my home spiromerty. I called and the decision was to take 40mg Prednisone (the bane of my existence) for 4 days ... There goes the blood sugar control.. It may put me back on insulin for the duration to keep it stable.
So far today I haven't needed it-but do have the Novolog sitting on ready just in case.
Will find out the blood sugar at dinnertime..If you hear a loud screaming "NOooooooo" it's only me..
Thursday, April 14, 2011
Insulin -Day One
So yesterday I chose to not take any insulin and work on modifying my eating and exercise habits.
I was pleasantly surprised to find that my blood sugar readings were within range except at bedtime. This is where I'd had some yogurt as a snack so the reading was what it would have been on insulin too.
This morning I wasn't in the 70's to low 80's but at 92. Lunch was 101.. so I'm attempting day 2 now.
I have developed a slight headache which I'm not sure is related or not. I may start taking the insulin again depending on how my numbers look. I've also ramped up my exercise program and water consumption. Both of which will benefit me in the long run.
Please understand this is not something that you should undertake because it's currently working for me. I have merely gone back to the severe controls that used to work for me before and gave up all the food I started eating and shouldn't have.
Should my blood sugar readings rise...I will be first in line for that shot. For the moment it's nice to have hunger pangs and not insulin entering my blood stream to work.
I was pleasantly surprised to find that my blood sugar readings were within range except at bedtime. This is where I'd had some yogurt as a snack so the reading was what it would have been on insulin too.
This morning I wasn't in the 70's to low 80's but at 92. Lunch was 101.. so I'm attempting day 2 now.
I have developed a slight headache which I'm not sure is related or not. I may start taking the insulin again depending on how my numbers look. I've also ramped up my exercise program and water consumption. Both of which will benefit me in the long run.
Please understand this is not something that you should undertake because it's currently working for me. I have merely gone back to the severe controls that used to work for me before and gave up all the food I started eating and shouldn't have.
Should my blood sugar readings rise...I will be first in line for that shot. For the moment it's nice to have hunger pangs and not insulin entering my blood stream to work.
Wednesday, April 13, 2011
Insulin
I haven't posted in along while mainly due to a few health issues, but I didn't want to post them here and make anyone worry it might happen to them too. When I don't feel well I normally go into seclusion so my body can regenerate and recuperate.
Todays posting has been on my mind for quite sometime now and this I need to get out there.
As many of you know I voluntarily started using Insulin (long-acting) last year because I could read the writing on the wall. My blood sugar levels were rising and knowing that Prograf and Prednisone were the culprits I wanted to correct it before it got bad.
I started with 15 units a day and have finally settled at 8 IU.Well that's what my Doctor has me on. I've been using 6IU for the last 4 months. I am still having morning low readings and sometimes waking in the night with severe lows.
The one thing bothering me at the moment though, is the churning in my stomach all hours of the night. If you're on insulin you know this is when the time release is "releasing" the insulin into your system. Three times last night it woke me up. As usual I lay there waiting for symptoms of low blood sugar to appear and when they didn't I knew it was time release at the wrong time. This is happening alot lately and I would really like to get a full nights sleep without waking- waiting-then trying to go back to sleep after being on full alert.
I remember I had a radically self-motivated strict diet prior to insulin. I am considering going back to that diet. One big issue I have with insulin is it gives me too much freedom. Freedom to eat things things I shouldn't; sweets, potatoes, bread-you know all those carbohydrates that love to raise our blood sugar. It also creates the mind set that I have insulin why exercise? It'll only lower my blood sugar and I'll have to eat to bring it back up. What a vicious cycle this insulin creates.
So we sit back, eat what we shouldn't and are afraid to exercise... Sorry, not why I got these 3 organ transplants. This is NOT honoring my donors and their families.
Todays posting has been on my mind for quite sometime now and this I need to get out there.
As many of you know I voluntarily started using Insulin (long-acting) last year because I could read the writing on the wall. My blood sugar levels were rising and knowing that Prograf and Prednisone were the culprits I wanted to correct it before it got bad.
I started with 15 units a day and have finally settled at 8 IU.Well that's what my Doctor has me on. I've been using 6IU for the last 4 months. I am still having morning low readings and sometimes waking in the night with severe lows.
The one thing bothering me at the moment though, is the churning in my stomach all hours of the night. If you're on insulin you know this is when the time release is "releasing" the insulin into your system. Three times last night it woke me up. As usual I lay there waiting for symptoms of low blood sugar to appear and when they didn't I knew it was time release at the wrong time. This is happening alot lately and I would really like to get a full nights sleep without waking- waiting-then trying to go back to sleep after being on full alert.
I remember I had a radically self-motivated strict diet prior to insulin. I am considering going back to that diet. One big issue I have with insulin is it gives me too much freedom. Freedom to eat things things I shouldn't; sweets, potatoes, bread-you know all those carbohydrates that love to raise our blood sugar. It also creates the mind set that I have insulin why exercise? It'll only lower my blood sugar and I'll have to eat to bring it back up. What a vicious cycle this insulin creates.
So we sit back, eat what we shouldn't and are afraid to exercise... Sorry, not why I got these 3 organ transplants. This is NOT honoring my donors and their families.
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