I've kept in the back of my mind that I need to blog... But as always LIFE gets in the way.
Today I wanted to add a little humor .. Only lung patients will understand the basis of my blog.
When we say we are nauseous from our nebulizer, many think reguar run of the mill nauseau.
Not a chance ! This is one of those "read between the lines" sort of thing. You know, something we just cannot explain, and others would never think it actually happens.
So without further delay, I give you my meaning of :
Nebulizer Nauseau
That undeniably nasty feeling one gets when doing a nebulizer treatment (breathing) to open up airways. Medicines such as Albuterol or Xopenex.
The entire body inside and out jitters so ferociously the stomach is thrown into an upheaval and hence- minor nauseau begins.
But oh my friends, it does not stop there... Oh ! if ony life were so kind..
The first nebulizer treatment is followed by a second treatment. Usually an antibiotic or saline solution to "break up" mucous . Not just any mucous either.. This is thick, stick to your airways mucous. The kind that refuses to move, no matter how many times you chokingly cough, eyes water, etc.
This triggers a cough where all one can do is hang your head over a can and pray it happens fast !
Usually not the case.. You cough, and you cough, and you cough. This stuff is moving but even a tortoise could go faster. You feel it at the back of your tongue and wish- "Just move !" As it ever so slowly moves it's way out- it leaves that wonderful taste all over your taste buds.. This triggers more heaves.. Yep I never said it was easy.
At this point the jitters combined with the cough & horrid taste have made your stomach do a complete flip. It is now following the mucous on the way up..
You now have full blown
Nebulizer Nauseau
No cure, No relief (becasue you'll only cough more)
Oh! And keep that toothbrush handy... You'll wear those out in record time ;)
Friday, April 3, 2015
Sunday, August 17, 2014
Updated, Decisions and A New Path in Life
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.
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.
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 !
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