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.
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