Pediatric Heart Transplant: looking for support as a parent of a teen

@amanda75ak, I'm sending a big Hello back to you with a Welome to Mayo Connect. I received my liver and kidney transplant at Mayo Rochester in 2009, and although I am not a teen, nor a heart patient, I assure you that you are in a great place for your teen to receive the best of care. Plus you, as a parent, will be able to learn as you walk beside your teen on the journey.
Here is a link for you about a teenage girl, a figure skater, who is a heart transplant recipient at Mayo Rochester.
- Joelle's Journey to a new heart
https://youtu.be/89QOXN5nFp0

You have posted your inquiry about Pediatric Heart Transplant in a perfect place where it can be readily seen by other potential pediatric patients and family members/caregivers. I hope that someone with prior experience will see it and join this conversation.
In the meantime I am going to tag some fellow members who are heart transplant recipients. They are adult recipients, but I know that they will be eager to offer their support and experience.
@eileenheart, @jcwilliams, @estrada53, @danab, @nanmargaret

Amanda, Is your teen on the transplant list? What would you like to know about the heart transplant process?

Hi @amanda75ak I also would like to welcome you to Connect. As @rosemarya said your at the perfect place to receive the best care. I see your teen is at a 1b on the transplant list so they must have a a pretty immediate need. I am also a Heart transplant recipient now 6 years ago in Jan of 2018. I was so very grateful to be raised to a 1b after an episode that made my need a bit stronger than 2 which was my initial listing. I myself was 59 when received it so definitely not a teen but hopefully can answer any questions you may have. My I ask the reason for the need? I remember meeting a young Heart transplant recipient once who was a baby when he got it and now is in his 20's. He says his life has been pretty normal enjoying all aspects of life and really didn't have any issues. I was kind of amazed that the heart he received grew with him. So further transplants were not necessary. I had my transplant in the Phoenix Mayo but they are all great locations and your at the main campus.
So I myself have a pretty normal life and enjoy hiking Golf and other outdoor activates. Im more than happy to share my journey of the process if you like .

Hello! Thank you for your response. I am so happy to hear you received your gift of life. Our son was born with severe arrhythmias and hydrops, discovered via an ultrasound at 25 weeks gestation. I began taking Flecainide while pregnant, and his symptoms and hydrops subsided. He was born at 37 weeks and it was thought he would take anti arrhythmic meds until his heart was large enough for an ablation that would cure his symptoms. His ablation at age 4 was unsuccessful in that they discovered not only did he have atrial arrhythmias as first thought, but also ventricular and junctional. Genetic testing was done by Mayo, and results showed that he has an SCN5A gene mutation, but it had a new “twist” not seen before. Simply, he has severe Long QT syndrome not well controlled by meds. He had an ICD placed at age 4 as well. He has been on different cardiac cocktails of medications his entire life. At age 7 those meds started to fail and he went into cardiac arrest (while an inpatient at Mayo). They listed him at that time at level 1A while adding Amiodarone to his meds as well as a PICC line with another med to allow his heart to rest and recover as much as it could (he was at 10% ejection fraction). While awaiting a donor, his function recovered and he was eventually listed as inactive on the transplant list. He has been taking Amiodarone for almost nine years, the longest ever out of pediatric and adult patients at Mayo. It is a dangerous med that can cause damage to other organs, which has been happening. It if damages his lungs, there is no recovery and he would be ineligible for transplant. Without other medications that will control his severe arrhythmias, it is now time for a new heart.

Wow what a Journey and Im also very familiar with Amiodarone I took it for almost 10 years just a few months short. Started in 2008 about Jun I remember and its why I was raised to 1b just before my transplant in Jan 2018. It did damage my Thyroid and it was removed before i was placed on the list. But it was the IV types of Amiodarone that was keeping me alive just before transplant. which was stopped New year's eve Dec 31st 2017. So my hope for your son is that he gets his heart as quick as I did. I think i was one of the shortest on the list 5 days. I am amazed at the recovery when He was younger tho. As a man of Faith myself I definitely believe in Miracles.

Our son and family have experienced so many miracles since discovering his heart defect, many that have stumped his doctors. Yes, Amiodarone caused hyperthyroidism for him about two years ago. It required prednisone for a few months to settle down. Now his thyroid runs a little low, but not enough to require meds. His liver is showing signs of moderate to almost early stages of severe fibrosis. He has been listed for one month and four days today. I have a feeling at his next check up in April there will be talks about stopping Amiodarone to keep his liver from receiving further damage. If that needs to happen he will become inpatient and need either an LVAD or ECMO.

I've met a few transplant patients that had the LVAD prior to transplant and the one advantage They always seemed to say was it gave them time to get stronger and once a heart became available they recovered much quicker than I did. I also was in the Hospital from early December until transplant because they had to shut off my pacemaker and if needed would do it manually with a sedative. I had been shocked so much i could not get rest from the anxiety and the constant fear of a shock. It was what I believe a form of PTSD. So I was not a candidate for the LVAD but if your son is that may help a lot with being prepared for transplant.

@amanda75ak
I will pray for your son to get the proper care and expedited for a donor. I also pray for you to have peace and strength as his caregiver. I am a single parent of a 14 year old son who has a heart defect that is being monitored as he grows. May need surgery in the future but nothing as serious as your son is dealing with. May God bless you, your son and your family❣️

@amanda75ak
Did you know about this support group session for heart transplants? I just saw it on my email.

Hi amanda75ak I'm Dave, 62 born with heart defect not found till heart attack june of 2023 replaced valve and two plastic tubes in ascending and descending aorta. Rochester Mayo did the operation and your son is in good hands, and this forum can give you and your son lots of support, ideas and only 1 requirement is needed and that is to just ask. Good Luck, God Bless Dave

@amanda75ak, I am dropping in tonight to let you know that you are in my thoughts and your son is in my prayers.