Life After a Heart Transplant

Fisrt, to Shan of GA. I am waiting for a heart transplant in NYC and I realize that life will be very different after the surgery. Life however, is very different before the transplant comes as well. I only had a few days to live before I recieved a BIVAD to help circulate my blood. It has made a huge difference in my strength and the way I feel. My life has been spared once already and I am more than thankful. Shan, your post was on December 08, 2008 so you and your husband may have already had the surgery. I just want to say that I hope all is going well for you and your family. Hang in there and don't be scared. If all goes well and I am sure it will you both we'll be home and recovering. Always fight and never give up; life is always better than death.

And now number two, Amy's book which I have never read and will never read. Amy, you have every right to express your opinion but I sincerely hope that you did not write down your story so you could profit from it. Only a few people know if that was the case. I think you know what it is like to contemplate your own death while you were waiting for a transplant. It wasn't much fun was it? Are you having a better time now after transplant? From when this article was written, you had 19 years of additional life, would you trade this all in to be dead? I know what I am up against in terms of medication and that it will be very difficult. To wish for things to be like they were though is, excuse the word, whiny. Life will never be as it was before and you have to keep soldiering on. I know that two certain little boys and a wife depend on my return. I will do everything I can do to get home to them. The rest is in God's hands and as before, he will hold me close and help me through the toughest times. Amy, don't write a second book declaring that you have had a change of heart (sorry, I couldn't resist) but ask yourself if you truly feel that the past nineteen years were not worth anything and that those years would have been better spent in a cold, dark, sunless grave. I will never stop fighting and will certainly never wish for death. That was, I believe your alternative. I have to think everyday will be a good one. I have met two people here at the hospital who have had heart transplants and they look great. They laugh and joke as well as assure me that although it is never easy, it's good. Anyone who has a loved one awaiting transplant or if you yourself are waiting for a donor, hang in there and always, always fight. Life is worth it.

late thirties and waiting of NY 3:23PM December 25, 2008

I haven't yet read Amy's book but I will. I am the mother of a heart transplant recipient who received his heart at age 16. We were and are grateful that his life has been extended. We were not however, properly prepared for the after transplant life.

No one told us about the post transplant cancers that are possible because of the immunosuppressants. After my son acquired PTLS post transplant lymphoma (cancer) after having his transplant for only 6 months, we were then told that that usually occurred after several years.

No one told us about the steroid psychosis that takes place after massive doses of steroid infused to reverse rejection. Have you ever seen a psychotic person handle a critical life situation. I have and it is not a pretty sight.

No one told us about the short term memory problems that make school difficult or that insurance would be impossible if you are not able to get a job which offers group insurance.

My son is now 21 and lives with pain daily, in one form or another, yet he must still try to continue working, because transplantation means that you are not disabled at his young age if you are transplanted. There is no way for a person to pay for the massive meds they must take without either insurance or great wealth.

Our medical system is seriously flawed when the aftereffects of a life saving treatment cannot be managed without such difficulty and few resources.

That is a hard life. I live with someone undergoing massive difficulty with it, so I can forgive Amy for being whiny.

What about the cellular memories from the organ donor? Nothing is told about those possibilities. The recipient is clueless about the donor unless the family is willing to contact them and give them information but there is no doubt in my mind that an effect happens.

My son changed after his transplant, in ways very small but still notable. For example, he developed a fear of flying, in spite of having flown for all of his life. He suddenly loved cake after having hated it all of his first 16 years. He insisted that his hair be long.

I can't help but wonder how the person who gave him his life lived and died. Some information ought to be available. Sex, mental status and manner of death ought to be the least received. Believe me that information would offer invaluable clues.

There is no doubt in my mind that most recipeints are grateful for an extension of life. As a parent, I am grateful. I am also sad that the quality of life is not accurately portrayed by those in the medical community and that resources to enable recipients to live the best life possible are so hard to find.

It is terribly difficult as a parent to watch your child dying before your eyes. You do tend to grasp at all offers. Yet here I am watching my child suffer so much he is talking of dying daily. He's even asked me to relieve him of his misery by shooting him. What kind of life is that?

Teresa of GA 1:14AM October 06, 2008

I went through my own process of my son's having to have a transplant at 14. I managed to stay on Kids insurance and it was all covered. It was a miraculous surgery and recovery.

That was 2004. In 2006 he went into rejection and for 4mos was fighting again for his life. They considered another transplant. I prayed hard, "No God, please no!" His heart recovered. He has a great attitude. I have watched him go through stages of depression, and not finishing school and just hanging with friends. Yes, I'm a doting mom, but I am trying to understand. If he has a long life or shorter, it seems to me, none of us is promised tommorrow, so live today. I don't see him motivated and I don't hear him talk about long term goals. Wouldn't it be helpful to plan and set goals, and accomplish something?

How can I help him? I feel sometimes I am giving him advice and not hearing his heart.

I have another issue. If your heart is gone, with stored memory gone and nerves cut, do you now have someone elses stored memory that you don't want? Did you mourn the loss of your heart? I did mourn the loss of Bobby's heart. He seems different.

Thanks for any comments

Also, now that he's older, he'll need to get his own medical insurance this year. Any ideas?

Eileen of HI 6:21PM September 10, 2008

I am sorry if this story afends anyone! I am writing as I think, please excuse the spelling!! On June 30th of 2007, my 30 year old son was killed by an 18 wheeler coal truck in Southeastern Kentucky. He was my only son and my very, very, best friend. When June 2008 rolled around, It would of been my 1st year of memorial too my son and hopefully a healing in my greaving! That was not to be according to the greater power.

Two weeks before Memorial weekend my 54 year old husband, an operating engineer, for several years, begin to feel he couldn't breath. At first the doctors thought it was pneumonia and two weeks later they found that his heart was in congestive heart failure. My husband or myself knew nothing about his condition and all the tests came as a surprise too us all. If it wasn't for our new family doctor, Dr. Borden, in Shipshewannaw, In., my husband would have been dead. By the time he was addmitted to Lutheran Hospital, in Ft. Wayne, In., his heart was only working 5%. By June 29th, my husband had a 34 year old, (new heart), one day before my sons death the year before. I don't think my son wanted my husband on that parellel world with him just yet, so I think within a two week time, he found my husband a new heart. There are some things I would like to know from some of you out there that are looking in. How long does my husband have to live with his new heart? When do I get the time to greive for my son? Is something intwined between the two or am I just working my thought process overtime? In March of 2006, I had a sub-contractor crush my right foot with the bucket of a bobcat, took me almost 8 months to walk right and still healing. Should I hid when June of 2009 comes around or should I just face the facts. Please let me know what you think. Email me at gsrex@ligtel.com I could use your input!

Sharon

Sharon of IN 5:34PM September 01, 2008