Heart Transplant Process

@christyhamm, Welcome to Connect. I can imagine the turmoil that is flowing thru your mind as your husband begins his evaluation process for a potential heart transplant. I am a liver/kidney recipient and to get you started I want to share this account by @danab about his heart transplant experience.

- Connect Feels Like Home with a Heart: Meet @danab https://connect.mayoclinic.org/page/about-connect/newsfeed-post/connect-feels-like-home-with-a-heart-meet-@danab

Christy, is your husband being evaluated at Mayo? Will you be able to accompany him to his evaluation appointments?

Hi Christy I think that link above is not working for some reason try this one
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/connect-feels-like-home-with-a-heart-meet-danadb/
But also I am a proud recipient of a heart 7 years ago this January. I'm also so very happy with the outcome. Compared to my life before I much prefer this one. So I'm more than happy to answer any questions you may have. I know at first I had my concerns as I'm sure you have lots of things running thru your mind. So please ask away and my particular story I shared in this link below
https://connect.mayoclinic.org/comment/325914/

Hi Christy,
Good luck as your husband begins the transplant process. Three and a half years ago I received a heart-double lung transplant at Mayo in Rochester. I was 54 at the time. There are many things to consider and I highly recommend taking good notes for your husband as you go through the transplant evaluation process. Also, start making a list of your questions so you can get them answered along the way. And of course MayoConnect is also a good resource to ask people that have been through the process.
Jackie

Hi christy,
I received my heart transplant 21 years ago at University Hospital at U. Of Arizona. I was 55 when I entered the program. At the time it was one of the biggest heart transplant programs in the US, started by Dr. Copeland. It is now part of the Banner Hospital network. My experience was exciting and the staff was great.
Please feel free to ask me any questions about my journey.

@christyhamm, Hi Christy, Has your husband started his pre transplant monitoring by a transplant team? Has he been scheduled for the pretransplant evaluation?
Will you be able to accompany him to the appointments?
How can we help you to prepare for your role as his caregiver?

@christyhamm, my name is Stephanie Jordan and I had my heart transplant on September 18, 2023. My husband did a CaringBridge journal for our family and friends if you want to see what my journey was like here is the link: https://www.caringbridge.org/site/388bc0b0-c925-3dc3-8dbc-84e1815d67fc
Hope it helps!

Welcome, @sjordan615. I see that you had your heart transplant at Mayo Clinic just over a year ago. What travels you've done since then. Wow!

What tip(s) would you share with someone who is starting the evaluation process? What do you wish you had known? How are you doing now, one year later?

@colleenyoung, it seems to be the better shape you are in the easier it is to recover. Although there are circumstances that may inhibit that. I was in good shape when I initially was hospitalized and then with the added fluid before the balloon pump and then being on the balloon pump for 9 days didn't help me maintain that. Prior to being hospitalized I was trying to build my leg strength and I believed that help but your muscle deplete a LOT faster then they build. So getting and trying to maintain mobility strength is important.

When I was going through the evaluation for the third and thankfully final time, I felt like after the transplant Mayo would "own" my body. That is not their intent at all. They want you to live your life after transplant as much as you want. There are added precautions I have to take now but after transplant I don't feel like Mayo "owns" my body. I do what I want when I want. They just give you the knowledge that make the best decision for you.

Now a year and over a month out, I am still working on building my endurance and being able to walk long distances. My heart doesn't seem to pick up it's needs to pump faster when I am walking. I can do other exercises and get my heart rate up relative quickly but not walking. I have never fit into the "normal" box so I just assume this is another area where I am different. But on that note, I am seeing progress. Just little by little. I'm trying to be patient with my body and take what wins I can. I have been purposefully breathing harder to make sure my muscles have to oxygen they need but maybe I should try jumping jacks or something to get my heart rate up before I start walking. Still figuring things out.

Colleen
Stephanie rocks. You will enjoy the details of her journey
Best always
s!

Is he a military veyeran?
If so, great support.