Home

Post-transplant Bumps in the Road and Rewards: Part 3

Note:   Readers should always consult their physicians before taking any action (or inaction) which may affect their health or involve decision making.

“I also wrestled with the same question [deactivating oneself from an active transplant list] and wondered if [name] wasn’t being a little foolhardy, . . . but it’s such a personal decision . . . that it’s hard to say . . . herewith MY reasoning for going forward at 18–20% FEV1.”

Pro- (for) Transplant:

#1 - As is . . . may be one cold away from lowered lung function/possible death;
#2 - As is . . . continuous and increasing heart strain;
#3 - As is . . . increased pulmonary hypertension;
#4 - As is . . . increased body weakness and fitness;
#5 - HATE the nose hose/leash!;
#6 - As is . . . QOL pretty much sucks;
#7 - After . . . breathe without help;
#8 - After . . . improved and probably better QOL . . . get my life back, so to speak.

Con- (against) Transplant:

#1 - As is . . . pretty sure bet to live another 3–5 years
#2 - After . . . HUGE trade off between the leash/nose hose and the meds!!!
#3 - Risk of possible immediate death
#4 - After . . . possibility of MANY new medical problems
#5 - SCARY AS HELL!

“Now, a couple of explanatory caveats regarding MY pros/cons. . . . I’m MUCH less active than [name] is, . . . much less prone to do rehab exercising, so the decline in body strength/health was an important factor in my decision. I was worried about my heart really. After [name] died of heart failure, I was reminded of A1AD’s REAL, less obvious effects, saw myself doing the same thing in a few years and it spurred me on. Also, I was having trouble with infections and had had to resort to Prednisone more often so that ‘1 cold  away from death’ got a little too close for comfort and became another big factor in my decision.”

“Now, 2 ½ months post-transplant, I know I made the right decision but only ’cuz I’m not dead, can breathe really well, and seem to be doing reasonably well. BUT, there have been times that I’ve seriously wondered if I MADE the right decision . . . going for it when I did. I know I’ll question that less and less as time goes on . . . it’s STILL VERY SCARY!”

“So, my point is that even after you make that highly personalized decision based on all the info you can get, you STILL might question it. At some point, you have to accept it and move on and fight the new battles that are gonna present themselves.”

“My only regret is that I didn’t take up the offer a little sooner to have my transplant. In the end my specialist at Royal Perth Hospital said that they wouldn’t offer a transplant to me again as I would be too ill to make the recovery. I feel now that if I had taken the opportunity earlier my fitness would’ve come back faster, though I’m quite strong in the upper body but my legs and endurance are taking some time to come back. So I believe the medical staff should be listened to more closely as they deal with these situations every day and do know what they are talking about.”

“Regardless if anyone is or was in exactly the same position as you are the individual factors involved remain the same.”

1. Present quality of life. If no other factors impinge on this continuing do not get a transplant right now.
2. If your health begins to fail or other connected problems appear, consider testing and listing precautionarily.
3. If your disease is a stable one as defined by a large number of people who share your disease and your pulmonologist’s and transplant referral doctor’s opinion, test, list, go inactive until advised otherwise. You will have lost no seniority on the list.
4. If your disease is one that cannot be predicted with any certainty, test and list and accept what life brings to your plate. Waiting too long can mean terminality without a reasonable expectation of receiving an organ on a timely basis.
5. If your quality of life goes to hell by all means test, list and get a transplant. During the commercial lung patients do not get back up for the second act like television. Even with our many complications, life and breathing take a front seat to the alternative.
6. If all this scares you, you are not alone, we were all scared out of our wits whether our diseases had been life long or newly acquired. If this is the case by all means follow your heart and mind and do what you feel is right. The ultimate decision is yours but make it an informed one not based on denial, anger or intimidation.
7. But do not let a current state of well being lull you into a false sense of security. If your medical types have all ready broached the issue of transplant then consider yourself sick even though you do not feel that way yet. You can exist on a tapering O2 supply of breathable air for a considerable length of time before its physical manifestations impact you in your daily life. But remember when you feel that your reserve of energy has gone, it has gone forever. Shortness of breath can take on many stages you will not recognize as shortness of breath. Increased periods of sleep without getting rested, eating less and less because it tires you to simply eat, staircases seem to get longer, casual items around you begin to get heavier, you feel you are simply getting lazy, you keep drifting off to sleep in mid-afternoon for no apparent reason, you pop awake at night gasping every now and then, you suddenly have acquired heartburn and never had it before and heart palpitations and standing up or walking and feeling the sounds around you going up and down like an idiot in an electronics store playing with the volume knob on the stereo equipment, you can no longer sing along with your favorite oldies on the radio without stopping for a breath, so on and so on. . . . . Any of this sound currently familiar? And all this can happen before you actually recognize you need O2 to carry on your daily existence.
   
   Think it all through and, of course, always get a second opinion, 90% of all insurance polices will always pay for those. And if any one or doctor can ever truly answer your question then they have found the perfect crystal ball. No one can really answer your question the way you and all of us wished they could, not even your doctors. And they will be the first to tell you that. They and we can only give advise. We know it’s tough but we have all faced the same decision. There is no wrong answer unless you are no longer around to ask the question again.
   
   The transplant question—to be listed or not—was a huge one when the doctor said, “I think it’s time to be listed.” By the time the call came in there was no question at all. He would shortly die, if he did not have the transplant. His doctor said he had no reserve left. A cold, the flu, any sickness could have killed him. The trick is to stay healthy!! Get listed and stay healthy!!!!! A transplant is a wonderful thing! I dreaded the thought of transplant. And now I’d like to tell everyone it’s not to be dreaded. We were told pre-transplant that a transplant was actually trading one set of problems for another. Well, I’m here to tell you that the set of problems you get from a transplant is totally worth it. My husband is a new man. He’s back and it’s wonderful.

Top

Updated May 24, 2005