Heart Transplant Anxiety

Hi. Not a heart transplant but a liver transplant 2.5 years ago. I know they are different but I had liver cancer and it was the only option. It went very well and almost three years later I am doing great and so glad I did it. Others who have had a heart transplant have commented on this blog and while some have had some issues all that I recall were still standing and glad they did it. If Mayo (world class) & your local docs suggest it I would go for it. Better than the alternative ? Best of luck on your decision and outcome whatever you decide. Prayers up.

While I had a liver transplant 28 years ago I found great support(especially in the early days) from reading the writings of a man who had a heart transplant. There is a lot of material here and you can pick and choose from the links what interests you - maybe start with section 1, the early writings. This gem was written many years ago but still totally relevant. I hope you find some comfort in his approach to the challenge, I certainly did.
https://www.rjwitte.com/changeofheart/GiftFromTheHeart/

I haven't been through the heart transplant experience, but did have a double lung transplant. I was in really bad shape before my lung transplant being on 30 liters of oxygen just to be able to sit up. Before the operation I would eat grapefruit and pomegranate if I could because you won't be able to afterwards. There is a list of foods that you won't be able to eat again.
The actual operation you are asleep for and when you wake up in recovery you are strong pain killers. As they get you up and moving, the pain will become less and you will be weaned off of the pain killers.
I had to follow up with my doctor 4 or 5 times the next week and then it slowly became less and less. Now I am down to ever 2-3 months. My pulmonologist became my regular doctor and I see specialists for other things that he gets the reports for, but all medication is through him to make sure there are no issues with interactions.
I belong to a Lung Transplant group, which we discuss what is happening with us and support each other. I would highly recommend that you find such a group.
If you have any specific questions you can ask and people on Connect will try to help you. God bless you,

Hi,
I had a kidney transplant 6 years ago. Transplant is so frightening and overwhelming. I was scared and sad and sometimes mad. All of those feelings are normal reactions to a life and death situation.

I don’t know a lot about heart transplants, but I do know that Mayo is the best. And so you go to the best and you do everything that you can physically to give your body the best chance for healing. You are young which is an advantage for healing and surviving.

I kept my vision on all that my body was doing right even while I had an organ failing the rest of my body was fighting valiantly to keep me alive. And yours will too. I also focused on the outcome that I wanted, which was to dance at my grandchildren‘s weddings. I tried not to spend much time on the fairness of things. Life’s is not fair. I let the doctors do their work and I did my work which was to prepare myself mentally and spiritually.

I’m sending prayers of healing strength for you and wisdom for your doctors

Warmly,
Stephanie

@nhostovsky, I can understand that thinking about a heart transplant can cause anxiety. Here's a discussion that you might appreciate:
- Heart transplant recovery: What to expect? https://connect.mayoclinic.org/discussion/heart-transplant-recovery/

I'm tagging fellow heart transplant recipients and caregivers like @jcblubaugh @estrada53 @danab @scottij @lmcarmichael @glinda @pjw51, who can share more about their experience with heart transplant.

@nhostovsky, have you had further discussions with your cardiologist about heart transplant? What are next steps for you?

@nhostovsky
I understand the fear and nervousness but I am not sure who with whom you are angry. Nonetheless, each transplant experience is unique to the recipient. Some had to make life style changes, other sail through evaluation. If you are considering Mayo (or if they are considering you) be aware that they will not put a good heart into a bad body or undisciplined mind which is part of the first phase; evaluation.

Your overall health will be assessed and needed changes will have to take place before you can be put on "the list" You will spend time with a psychologist and psychiatrist to determine your mental commitment to needed changes and sticking with the protocol after a transplant. About half way through the evaluation you will get a feeling that you might make the list because post transplant issues are begin discussed.

The surgery itself is easy...you are under anesthesia. I participate in a patient urn heart transplant support group and this is where the variation in experience occurs. Depending on the causes and how you react to the various immune supressant drugs your meds will vary from your peers. Some of your meds are necessary the first 3, 6 and 12 months. They will be dropped but you will be on immune supressant drugs the rest of your life.

You will have life style changes too. I never shake hands, no bagged lettuce, no sushi (sigh), no rare steak (double sigh). And so on. But after a while you don't even think about the changes. You are alive to complain about the little things. Again, if at Mayo they will watch you like a hawk the first year. Then you come in for annuals checkup unless you notify them that things aren't going well.

I suggest you join a social worker led group from whatever hospital your use for the transplant. They can be helpful in facilitating your transition to your new "unnatural" life.

My apologies if I write this rather disjointedly. I kept getting called into the kitchen by my wife who is making lunch.

Best always,
s!
Scott Jensen

@nhostovsky
Scott Jensen again. Oof! Re-reading my screed makes me cringe. My writing was horrible and though I pre-blamed my wife for the interruptions I feel like I should apologize.

Feel free to ask me any questions. That may be the best way to assuage your concerns as it helps me and others know your specific challenges.
Best always,
s!

Hi, I'm a heart Transplant recipient now 7 years
Ago. I also started out with very low EF a 5% and that prompted a pacemaker with defibrillator.

that did me well for about 9 years and my EF did get up into the high 40s but my main problem was an enlarged heart.

So I had to consider Transplant when the medications were not doing the job and I was getting shocked a bit too often.

I did tho have some Ablations done which solved the problem for a while each time. Have they mentioned Ablations yet? I've met
Some who have done so well on an Ablation that they never got to the point of Transplant. Something to ask about. An Ablation is a procedure where they try to find the pathways in your heart causing the Vfib and if there successful may give you many
Years more before Transplant is necessary.
But im here if you have any questions going forward and wish you well finding out what options you have.
As a note the Ablations help get me to a
Place where I could be ready work wise for the process of transplant and even tho after Transplant I had to leave the work I was doing as a Communication Technician but close enough to retirement to get an early one. So overall it worked out for me.
Have a Blessed Day