Best of luck to you and your son. I had a heart transplant on Nov. 20, 2006. My best advice to you is to do all the research you can so you know what will be ahead. After the transplant there will be many appointments for biopsies of the new heart and echocardiograms to monitor your son for rejection. There will be medicines that are quite expensive that he will need for the rest of his life to help him from going into rejection. The most common here are Neoral, CellCept. Prograf and Prednizone.
I was in the hospital for 4 months prior to the transplant unable to eat or walk. During that time all kinds of doctors did evaluations to make sure that mentally I was able to handle the idea of someone else's heart being placed in my body. they checked me for anything and everything. I had an excellent transplant center and was thoroughly prepared for every step of the way. Talk to your son's transplant coordinator. Search the internet. You can never ask too many questions.
After the transplant surgery, your son will be in the hospital for about 10 days. He will have drainage tubes which will come out in the first couple of days. He will soon be walking around and eating solid food.
It is an amazing experience and truly a gift of life. He will feel like a new person within a few months and with a few limitations he will be able to do anything he wants and will have the strength to do it.
I have been wanting to reply to you for several days but could not remember my password..doh
Thank you Fran for your reply it helped to answer some questions. If you dont mind me asking had you some underlying heart problems before the transplant, I mean congenital or whatever. We are abt to go for a week of assessment tests in Melbourne and we have had a run up to this 8 years ago at Great Ormond St in London when my son Oliver was 7. He was born with HPLHS and has undergone many ops 4 of which have been open heart and he now has a pacemaker and so I feel we have some knowledge of the post op situations, none of which are pleasant but maybe that will help us. He developed a Staph infection abt 3 months ago and has undergone 6 wks of antibiotics IV and lots of other complications but in himself seems quite well to us (ths hospital feel he needs a transplant because of his fitness levels which are limited).
I thank you for your reply and hope you will be able to help me further during my need for information.
No, I did not have any prior heart problems. I had gone into the hospital for a knee replacement and was given the wrong medication which caused a massive heart attack. Doctors inserted three stents into my heart but never gave me Plavix or Aspirin. This caused another heart attack 3 days later. I was transferred to another hospital knowing I needed a transplant. I stayed in the hospital for 4 months on dialysis because my kidneys were failing and my liver was in shock. I received my transplant after 4 1/2 months as I was on the top of the list with only 7% ejection factor.
Doctors had told my family that the transplant itself would take between 6 - 10 hours. Mine only took 4 hours because I had never had any other heart surgery and had no scar tissue build up. The bottom half of my heart was dead. Your son's surgery will most likely take longer than mine as he has had heart surgery.
As you know, rejection is the biggest fear and problem with a transplant. I had my first rejection in July and spent 8 days in intensive care. I didn't even know I was in rejection as I felt fine. It was discovered during a regularly scheduled biopsy. After getting mega doses of medicines I feel better than ever now. I also developed the CMV virus (Cytomegalovirus) which is a form of the herpes virus. I was negative for the virus and my donor was positive. I got the virus from him. I am now back on an antiviral virus.
While transplant is very scary and complications can develop, the benefit of the transplant is so much better than not having it. Your son is young. He will be able to live his life the way he wants. Granted, he will have to take medicines for the rest of his life but he will be able to play ball, he will be able to be happy and healthy.
Please keep in touch. If there is anything I can do to help you through the process please let me know.
Thankyou for your quick reply it has been very informative for me. You really have been through a lot and I am glad you are seeing the benefits.
Another personal question, how old are you, just curious. We are away to Melbourne next wk for the assessment tests. We have told them that we dont want to go ahead with the beeper for another cpl of weeks as my sister is coming out from the UK with her son (10) and I havent seen her for 6 years and as she has made a lot of financial sacrifices to be by my side during this difficult time I dont want the pressure of beepers going off and to be able to enjoy this time and not only me but Oliver wants it so much and is desperate to have time with his cousin and we will make the most of their 2 wk visit before reality sets in. Oliver seems to have overcome the Superbug virus that knocked him back and is now back at school although part time. He is such a happy teenager with a great sense of fun, enthusiasm and a comedian, and full of life (albeit not full of physical energy) he has a great appetite and I spend most of my time away from work cooking for him, he loves unusual food, spicy food, strong cheeses and all the things you dont expect a 14yr old to enjoy!!!! Most of all I hope all these experiences dont knock that away from him, he is considered to be (as teachers tell me) the most popular boy in his year at school and has admiration from the whole school for all the challenges he has had to undertake.
I thank you for your interest and will keep you up to date with what happens next week,
Kind Regards, Karen x
Just wanted to offer my support for you and your son. Best of luck to both of you in this difficult situation. Here's my story, if you are interested:
I had a heart transplant in 2002, 6 months after being diagnosed with cardiomyopathy. At the time of the transplant I was 17 years old and had no other health issues. I was high up on the transplant list (in the hospital with an IV medication drip), so I received my heart after only four weeks.
The surgery went very well, but I've experienced three rejection episodes (two minor, treatable with a 3-day course of steroids, and one more serious, requiring more experimental treatment - but this is quite rare). The risk of rejection is much greater (and is pretty much expected) in the first year; after the first year, if your son takes his medicine correctly, he should stay healthy. Like Fran, I also developed CMV a few months after transplant. Mine was in the intestines and gave me some seriously unpleasant digestive problems, but they were treated with five days' worth of IV meds in the hospital. Also, the steroids I had to take for six months after transplant gave me a very puffy face...but this diminished as I was weaned off the steroids.
No doubt about it - having a heart transplant is hard, especially for a popular teenager who should be running around, having the time of his life and not worrying about his health. But your son's life will be so much improved by the surgery. In the six years since my transplant, I graduated high school (with my class), graduated college, and am now working at a job that I love. None of that would be possible without the kindness of my donor's family and the brilliance of my doctors.
I truly hope that everything goes well for Oliver. Feel free to contact me with any questions.
Thank you for your reply, it was really interesting to hear someone elses experiences. We are waiting to hear when we will be put on the list, as Olivers immunity was a bit lower than they would like, when they did the transplant assessment tests a month ago. As you can imagine we are very apprehensive, but all committed to seeing him enjoy a life with more energy.I think at the moment the hard part is living with the thought of not knowing when you will receive a call and the trauma of getting there in time etc. We live 3 and a half hrs from Melb, but driving would probably still be quicker than flying from our small airport.
You really achieved a lot so soon after yr transplant and that is gd to hear, gives me hope.