1. < Transplants

Heart Transplant Process: What do we need to know?

Posted by christyhamm @christyhamm, Sep 24 2:37pm

Good afternoon,
My husband has been dealing with chronic obstructive cardiomyopathy for over 10 years. His heart continues to deteriorate. Now at 51 he will be starting the process to get on a transplant list. I am looking for any resources that could be of benefit to us while we walk through this journey.
Thank you,
Christy

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 1 8:53am
In reply to @sjordan615 "@colleenyoung, it seems to be the better shape you are in the easier it is to..." + (show)
@sjordan615

@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.

Jump to this post

@sjordan615, Your story demonstrates the fact that the word "Journey" is what organ transplant is all about. The before/during/after are a part of our experience.
It is great to hear that you are making progress while learning about your body and how to achieve your goals!

REPLY
my44 | @my44 | Nov 1 12:22pm

@rosemarya It is indeed a journey...but oh so worth it!

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 3 1:30pm
In reply to @my44 "@rosemarya It is indeed a journey...but oh so worth it!" + (show)
@my44

@rosemarya It is indeed a journey...but oh so worth it!

Jump to this post

@my44, I have a feeling that you have been on a powerful transplant journey. I want to invite you to share your story - your journey. I started this group several years ago as a place to collect our stories.
Here isthe link:
- Organ Donation and Transplant: What is Your story?https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

My44, please let me know if you have any questions.

REPLY
1 reply
my44 | @my44 | Nov 4 7:55am
In reply to @rosemarya "@my44, I have a feeling that you have been on a powerful transplant journey. I want..." + (show)
@rosemarya

@my44, I have a feeling that you have been on a powerful transplant journey. I want to invite you to share your story - your journey. I started this group several years ago as a place to collect our stories.
Here isthe link:
- Organ Donation and Transplant: What is Your story?https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

My44, please let me know if you have any questions.

Jump to this post

@rosemarya
Thanks for the invite. Will do.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 1 hour ago

@christyhamm, how are you and your husband doing? How are things going with evaluation and getting on the list? Got more questions as you walk this path?

REPLY
View MoreView Less
Please sign in or register to post a reply.