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Stiff Heart - diastolic heart failure
Heart & Blood Health | Last Active: Mar 3 10:16am | Replies (214)Comment receiving replies
Hello @ninimurphy
I just read your most recent post and was touched by all you have been through over the past few years. I was also touched by your attitude and the fact that you expressed gratefulness for your medical team in the way they work so well together.
As you are now experiencing heart failure and your doctor is suggesting that you be put on the transplant list, I would encourage you to join the Transplant discussion group here on Mayo Clinic Connect. There you will find the Members much like yourself. They have amazing attitudes and gratefulness for all the help they have experienced. So many of them have been transplanted and are feeling so much better now. I believe that you will find encouragement and help as you face the next step in your healing. Here is the link to those discussions, https://connect.mayoclinic.org/group/transplants/
I would also like to tag the Mentor of that group, Rosemary (@rosemarya) to this discussion. Rosemary has been double-transplanted with a new liver and kidney several years ago at Mayo Clinic. I would also like to invite JK, (@contentandwell) who also received a new liver at a hospital in the Boston area and @jodeej whose husband was recently transplanted at Mayo. They are all living (and smiling) examples of how good life can be post-transplant. I'm sure you will enjoy getting to know these courageous (and thankful) ladies.
Will you keep in touch and let me know how you are doing?
Replies to "Hello @ninimurphy I just read your most recent post and was touched by all you have..."
@ninimurphy I know it can be difficult to face a transplant, and frankly initially I was not sure if I wanted to do it. When things got worse though I was ready to proceed and thankfully not too long after that I did have a liver transplant.
Having a life-saving transplant changes everything. You never look at things in the same way again, and are grateful for every day that you are given. I feel great, no ill effects from the transplant. I do of course have to be careful of infections due to the immunosuppressants and right now I have the second cold I have had in a few weeks! This did not happen last year, I don't know why it is now, but I am in that miserable, coughing, sneezing, sore throat, headachy type of feeling so taking it easy today. No temp, this is just a cold.
Speaking of transplants, today is my "transplantiversary". It's been two great years. It really is like a re-birth.
JK
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I will definitely check out these and keep in touch.
I am in New York and deal with Columbia Presbyterian.
I have heard many wonderful things and then heard about
End of life care, trading one major problem for another, etc...
It causes quite the roller coaster with your emotions. I am in a support group in upstate NY which helps.
All the surgeons that have operated on me smile and say, you got this, no problem. They know I am an easy patient and will do whatever necessary. It’s hard because I want the truth, but there is a fine line between honesty and brutally honest when first faced with heart transplant ( along with waiting for new guidelines that will help me). I am not close to any Mayo Clinic, nor do I have any family by any of them, but am interested in any info I can get.
Thank you !