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

@danab Happy to hear you are home and doing great. I suspect the blood counts will improve when you get rid of the infection.
They keep my immunosuppressant fairly low also, just slightly within range. I think that's probably the goal after you have had your new organ for a while.
JK

I will pray for you too.
Christine

@christinelouise, I am going to add @danab to this reply. By including his @name, he will get notified that he has been mentioned.
Anytime that you want to direct your response directly to someone, you can do this, too.

Okay. I'll try to learn how it works.

@christinelouise hi i would be glad to answer any questions. I was having problems the month prior to being transferred to Mayo Phoenix. My ep dr at the time felt it was time for an evaluation since drugs and ablations were not helping anymore. I got to Mayo the beginning of dec 2017 for an eval bit my heart had other ideas. It got worse during dec so by dec 31 i was not leaving the hospital and was put on the transplant list. The eval took about 2 weeks but i was also having heart problems which delayed the eval on occasion. I was pretty bad so on dec 31 i got moved on the list from a 2 to a 1 b. The Lord blessed me tho and i got my heart on January 5 2018. So thats my story condensed version so ask any question s you may have.

@christinelouise, The posts and replies that you have made have come thru without a hitch, as far as i can tell. So keep on doing what you are doing.
If you want to learn more about how it works, here is a link that contains step by step directions.
https://connect.mayoclinic.org/get-started-on-connect/
As a mentor, I am always available if you need assistance.

Hi @jbilton , Just wanted to check in an see how things are going? Its been a creazy couple of years and things seem to be getting back to normal. How are You both doing? Last we talked you were looking into getting checked out for a Heart Transplant. Did you Husband get a new Heart? Or maybe the treatment plan is still working you mentioned back in Jun of 2019? Hope all is going well and let me know how you all made out? Im now just passed my 4 year mark and things are pretty normal for me. Have a Blessed day Talk soon

@danab, Dana, You have perfect timing! Thank you for bringing this discussion about Preparing for a heart transplant to the forefront of transplant discussions!

Recently I had short conversation with a woman whose relative needed a heart transplant. She was confused and worried, and did not know many details about what might lie ahead. She began to question me about my pre transplant experience. I told her about my experience as a liver/kidney recipient, but wished that I had more to offer from the perspective of a heart transplant experience. She also had questions about a "little box and battery thing" that the relative had.
I probably won't see this person again, but I began to think that there are many others like her (and me) who don't know what is is like to be a heart transplant patient.

I would like to invite, past, present, and new members to share your experiences as recipients and also caregivers in this discussion about "Preparing for a heart transplant" as a way to support and to help others along their own heart transplant journey.

Here some questions to consider: What was your first indication that something might be wrong?
Did your condition come on suddenly, or was it gradual over time? What symptoms did you experience? Were there any optional treatments prior to transplant?
What would have helped you to be better prepared for your own transplant?

@azdan99, @estrada53, @cburch, @scottij, @jackiez - What would you like to add?

I was on a bi-VAD device in the hospital for 6 months waiting for a transplant. In 2002 it was not a "small box with a battery", but a washing machine size pneumatic pump plugged into the wall with 8 foot tubes attached to me. There was always a technician in the hospital to provide support to make sure the device was functioning correctly. Not a great experience, but it kept me alive. Daily visits my lab personnel to test my blood "thinness" and pharmacists to adjust my meds.
Multiple visits a day by transplant teams to monitor my status and inspect my incisions.

Hi - I had a heart/double lung transplant in April after a very short time of being on the transplant list. However, I had restrictive cardiomyopathy, chronic Afib and pulmonary hypertension for many, many years. This had been managed at Mayo via the Congenital Heart Group with meds, a pacemaker and eventually an ICD as well as living a healthy lifestyle (very active, eat right, sleep, etc). The year or so before my transplant I had a virus (not Covid) that about killed me and my ICD fired 6 times one evening. I went to Mayo and was admitted and so began my journey towards transplant. I had very little time to prepare for transplant as I was fortunate to get organs pretty quickly. This was probably a good thing because I did not have time to dwell on it and over think/analyze. Yet it was enough time to procure a short term apartment rental in Rochester for my family as well as set up online automatic bill pays, share passwords with my husband, etc. I would be happy to answer any specific questions.