Life After a Heart Transplant

Transplant in AZ

My son has had heart problems all 18 years of his life. He has had his chest opened eight times. Plus many other surgeries. I do not think he has any idea how many lives he has impacted over the past 18 years. He has maintained an incredable outlook on life. He has been involved in clubs, church, and loves the outdoors. He has many plans for the future. He was active in sports and he keeps coming back time after time from each surgery. Coaches comment that they wish all of the players had his determination and drive.

This week he received a new heart. I can not express my gratitude to the donor who ever you are. He woke up yesterday morning. He is ok so far and we keep our fingers crossed. We have talked and he knows everything that has happen to him and that he has someone elses heart living inside of him. He wants to get out of here and graduate from high school this year. He is going to attend a community college for the first year and then he plans on going to a state college.

He has battle adversity throughout his life and he knows that he has been given a second go round. He will excell at what ever life throws at him. Ya, he gets depressed at times. Things are not always perfect. But we work through it and we always remember there are people out there that are not as lucky to have a son and dad relationship like ours.

I can not imagine life without him.

KEEPING IT REAL

Books are required to be niether inspiring nor positive. Some chose not to read the book and make unremarkable and derogatory comments, others read it in hope that a nugget or pearl of wisdom will validate or transform their lives. Just use the book for what it is. A written personal experience about the life and death struggle of staying alive. I am fully conscience of all that a heart transplant and the aftermath entails. The ultimate trial, some make it, some do not. Let us read her words and try to understand.

Re: The heart of the matter

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.

The heart of the matter

I am sitting in the hospital with my 35 year old husband and I am terrified! We just found out they want to put him on the heart transplant list. His heart is just not responding to treatment at the moment. I have faith but I know it is what it is. We are not exempt just because it's hard and not fair. I think everybody has legitimate feelings but Amy's feelings for the last 19 yrs makes me feel bad. Would she had rather died or is she just venting. I know noone chooses this for their life but isn't it good to be alive. I feel as if my husband is dying and so am I. I know nomatter what happens now, our lives have changed forever. Is there anybody out there with a heart transplant happy and healthy? or does that just not exist anymore after you become "heartless". I just need to know, I am terrified!!!

What the doctors don't tell you

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?

Twenty and Transplanted .

Being a heart transplant recipient and also twenty I've endured a different life than those who are my age and presumably healthy. My heart disease was genetic and after losing half of my family to sudden death, and most recently my Father and Brother who was only 24 I've had to readjust to life without close family.

Three years ago my name was taken off the heart transplant list. I live day by day, month by month, and year by year never knowing just when my life may be cut short. Of course this heart wasn't a cure but, only giving me a little longer on this earth for a second chance at life. I owe my life and my strength to my donor, and for that I've never had suicidal thoughts not even in my weakest moments, full of rejection and saying goodbye to my father and brother. I've learned that I am so lucky that I was able to see another day. Of course, survival guilt has consumed my life but, that's typical when grieving over your own native heart.

The cost of a transplant is very expensive, and the post transplant cost of medicines can be outrageous but, I have been so blessed to still be a full time college student, drive a brand new car and have my own house close to the beach. I have an amazing boyfriend who has been by my side through all of this and has given me strength to push forward when I was too weak to get out of the bed.

God has shown me how amazing a second chance at life can be. I praise Him every chance I can get, and I share my testimony with others for the sake of how great I have it. I may not be old but, I'm wise beyond my years.

son with transplant

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?

Those who are waiting...

There are thousands of people waiting right now who can't do anything except for lie in a hospital on dopamine, dobutamine, cardizem, and neosynephrine drips (amongst many others) while they wait for a heart. They're tied down to wires and monitors and they are in the hospital more frequently then they are out of it.

This girl is self centered. To write a book and complain about the life that she has now she should contemplate the life she had pre transplant and how all she could dream about was LIVING.

She may have infections and nausea to look forward to, but she knows that she'll be alive next week.

Those still waiting? Not so fortunate.

What should I expect, when just before Memorial weekend my husband is addmitted to Lutheran Hospital in Ft. Wayne Indiana, needing a heart transplant?

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

had a friend

had a buddy in middle school that had a heart transplant and he seemed quite happy. he smiled alot. joked around alot and what not...always cuttin' up. the summer after i met him he threw himself out in front of a bus. i never knew why. i just kinda stumbled onto this site as i was looking into heart transplant information for someone on tagged.com the amy silverstein story kinda reminds me of that situation except i thought my friend was coping real well and i'd never thought he'd kill himself.