I had been in the hospital the week of April 3-8, I was raised up on the UNOS list to a 1B which brings me closer to a new heart but still eons away if no hearts are donated. But I was encouraged. I had entered the hospital with some elevated liver enzymes, but they resolved quickly. While home on the milrinone I began to feel it's effects almost immediately, but then started a downhill climb feeling poorly each day.
By the 14th the visiting nurse arrived to find me pale & in a listless state because of something unknown. I was then taken to the emergency room where I was admitted before all others due to SOB & chest pains. I began to shiver uncontrollably & could not get warm, teeth chattering I looked to Tom for relief in answering the book full of questions. His face told me everything, his tears confirmed that further. The Allentown Drs called Philly & the response was to get me there ASAP, draw some blood cultures & the ambulance was on it's way. My WBC was severely elevated indicating infection somewhere. They pulled the picc line and I felt defeated.
No more milrinone, no more 1B, I knew I was now a 7, not eligible for a heart at all if one would miraculously appear while I was sick febrile & infected. Rejection is the reason why, and why should I get a heart to waste if someone who was well could be helped. I knew it was the right thing to do but I was mad that my body betrayed me.
In the next few hours I was found to have a blood infection that did not come from my picc line but rather the common bile duct was backing up sludge & bile into my bloodstream. I would need to have it dilated. My past abdominal history makes this a hard feat,however it was done in 3 separate PAINFUL procedures, that rival no pain I can recall. I was in the hospital for 22 days while on antibiotics, round the clock anti nausea medications.
The GI team feel they have done the best they can without a major surgery, only time will tell. But that sours my stomach & blows my mind in so many ways, suppose I get back to 1B or even 1A & the liver flares again. This mental ping pong game is about life & death not antibiotics & inflammation. I tried to get this point across through a tearful explanation that my liver and heart ARE related. Someone said they are two separate entities, well not for me they aren't. One liver inflammation negates the progress I have made in my quest for a new heart.
I grow weary waiting, knowing full well my latest echo shows an ejection fraction of 5. How does one function in life at 5? I'm barely holding on by a thread. Fear is consuming me. My next DR visit is Tuesday, I will let them know of my "current condition". Holding my arms up to type is becoming nearly a chore, most likely deconditioned from the lengthy stay but never the less fatigue is paramount. I slept yesterday away & plan on doing it again today. My body is yearning for it. How much of this is my heart I can't be sure.. but suffice it to say it plays a major role.
By the 14th the visiting nurse arrived to find me pale & in a listless state because of something unknown. I was then taken to the emergency room where I was admitted before all others due to SOB & chest pains. I began to shiver uncontrollably & could not get warm, teeth chattering I looked to Tom for relief in answering the book full of questions. His face told me everything, his tears confirmed that further. The Allentown Drs called Philly & the response was to get me there ASAP, draw some blood cultures & the ambulance was on it's way. My WBC was severely elevated indicating infection somewhere. They pulled the picc line and I felt defeated.
No more milrinone, no more 1B, I knew I was now a 7, not eligible for a heart at all if one would miraculously appear while I was sick febrile & infected. Rejection is the reason why, and why should I get a heart to waste if someone who was well could be helped. I knew it was the right thing to do but I was mad that my body betrayed me.
In the next few hours I was found to have a blood infection that did not come from my picc line but rather the common bile duct was backing up sludge & bile into my bloodstream. I would need to have it dilated. My past abdominal history makes this a hard feat,however it was done in 3 separate PAINFUL procedures, that rival no pain I can recall. I was in the hospital for 22 days while on antibiotics, round the clock anti nausea medications.
The GI team feel they have done the best they can without a major surgery, only time will tell. But that sours my stomach & blows my mind in so many ways, suppose I get back to 1B or even 1A & the liver flares again. This mental ping pong game is about life & death not antibiotics & inflammation. I tried to get this point across through a tearful explanation that my liver and heart ARE related. Someone said they are two separate entities, well not for me they aren't. One liver inflammation negates the progress I have made in my quest for a new heart.
I grow weary waiting, knowing full well my latest echo shows an ejection fraction of 5. How does one function in life at 5? I'm barely holding on by a thread. Fear is consuming me. My next DR visit is Tuesday, I will let them know of my "current condition". Holding my arms up to type is becoming nearly a chore, most likely deconditioned from the lengthy stay but never the less fatigue is paramount. I slept yesterday away & plan on doing it again today. My body is yearning for it. How much of this is my heart I can't be sure.. but suffice it to say it plays a major role.
Sleep is always good for the body, healing functions being less disturbed by waking activities. Especially at this time, your body needs only to be dealing with staying well, all else can wait while you sleep.
ReplyDeleteBlessings.