Preparing for a heart transplant: Would love to chat with others

Thank you for these articles. I had not read them until today and it was most insightful. I am going to have my husband read about Yasmin as he is a prosecutor as well. We got our paperwork yesterday and my husband's comments were this is frightening and overwhelming. Reading her article I am sure will make him feel better.

I just spent 3 weeks 5/12/19 to 6/2/19 at the Mayo Clinic in Jacksonville for a lung transplant evaluation, travelled across the country from Oregon. It was an extremely intensive and a scary process not knowing or understanding all the details. At 70 years old I have never been in a hospital, 3 weeks of tests and more test was overwhelming. I quickly became very comfortable with my Lung transplant Team. Everyone made me feel at ease all the time, doctors, nurses social workers, lab techs, lung transplant patient support group and the comfort dogs are the best in the world. At the end of 2 weeks I decided that a lung transplant is the way I want to go. The team made it easy to decide. I have to return on 6/22/19 for a week to fix an artery so that if successful I can go to Selection that week. We stayed at the Courtyard Mayo and will do so again, it is very convenient and easy to get back and forth on a on demand shuttle, just a few minutes each way, great with my wheelchair. For me the beauty of the campus, all the great people involved and the fact that everything worked like the Swiss Railroad, on time all the time. I will pack up my power wheelchair, put it on the plane and carry my portable oxygen concentrator on board and be there a week Saturday.
Trust that all goes well with your trip and my prayers are with you.

Ours prayers back to you as well. We will be there on the 18th for the day. My husband is overwhelmed at the prospect of this but sounds like that is normal. Take care.

Yes it is overwhelming to me, however my team at Jacksonville has made it easier. The Lung Transplant Support Group made a big difference for me. I spent 6 hours over 3 weeks with them. I'm sure there must be one for heart transplants.

@djallan, Welcome to Mayo Connect. Thank you for sharing your description of your recent experience.
I am happy to hear that your evaluation process and testing has been accomplished, and that you will be able to return to Mayo soon for a preliminary procedure. I will keep you in my thoughts and prayers and you travel, undergo a successful procedure, and get listed for your transplant. It is a big step, and you are going to be in the best of care at Mayo.

@jbilton, It is normal to be overwhelmed. The Transplant team will walk you thru every step of the way. I suggest that you begin a list of questions and take them with you. I used to sit in the waiting room and add to my list, but usually my team answered them before I even asked them! They are that good at Mayo.
I will send prayers also.

@jbilton hi sorry for the late reply im actually back in the hospital due to a virus but the Hearts doing great. Im 15 months post and the transplant process went smooth. I had a a pretty bad heart coming in to my eval i was already in the hospital trying to save my old heart. During my evaluation my heart got so bad that it came to the point the only option was a transplant. Praise God i got a heart quickly in about 5 days. Being faily weak due to 2 months in the hospital prior to the transplant. But i was driving again about 6 weeks after and by 6 months was walking Long distance and starting to feel pretty normal. By a year i was hiking and playing golf again. Ask any question you have. Good luck

Thanks for your reply. We have arrived in Jacksonville and will start our journey tomorrow. It was encouraging to see that you were driving in 6 weeks. How long were you in heart rehab and still in patient? How frequent were your appointments for follow up? Just curious as to the logistics of not living in Jacksonville.

Hi, @jbilton - hoping all goes well as you start your journey in Jacksonville. Hoping that @danab will have more information on how long rehab lasted while still inpatient and also frequency of follow-up appointments.

danab - how are things going with your virus and time in the hospital?

Thank you! We are back home and very pleased with our first trip to the Mayo Clinic in Jacksonville. They are going to tweak some medications and watch fluid and sodium intake for now. Another visit in a month. So... maybe no heart transplant in the near future for my husband. We are happy for this news.