Just Wondering?

Good Morning. Just wondering. Where have all the heart transplants gone?  I have been lurking but have not seen any posts from my old transplant friends.  In August of last year, I met my goal of 20 yrs with this wonderful heart.  I have been through the "Refiners Fire" so to speak this past two years. I am amazed and deeply grateful that I am still here.  It is amazing what the human body can endure. I have been under outpatient Palliative care with Hospice - so wonderful to not have to endure all the testing and doctor stuff. I am on only the necessary meds now and under pain management. Just wondering does anyone know of any transplant person that developed a clotting disorder that cannot be diagnosed?  I suffered a brain hemorrhage on Coumadin while at a normal level of 2.2. I was taken of all blood thinners and in two months suffered more clots - one clot so large it formed in my left leg from my ankle to my knee - one solid clot. I am now on Eliquis, a new blood thinner, but have been told this is a last ditch effort and it is not a matter of "if" I brain hemorrhage but "when."  Since, being under Hospice type care I have found such a sweet peace and am grateful that I can spend whatever time I have left in total tranquility I celebrated my 78th birthday in January, shortly after we moved to Mount Vernon, WA, with my family.  It's wonderful to be near children and grandchildren. My love and best wishes to all you brave and wonderful transplants.  Are we a blessed bunch?

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  • Hi Yvonne from a fellow recipient in Utah.   I just celebrated 16 years with my heart.  I'm doing great, but do have some CAV and stiffening of the heart muscle.  I'm 52 and will probably be looking at another transplant before too many more years pass.  Your story is inspiring and I'm glad you have had time to spend with your family.   I'm sorry about your other health issues.  I hope you find much happiness and peace.   We definitely are blessed!

  • GREAT job you guys! What level is this 2.2 you refer to?

    • Hi Neal. Because I had been clotting in my legs and thigh. I was put on Coumadin to thin my blood. A 2.2 level is where the doctors wanted my blood work to be. It is considered a safe level. But I developed a brain bleed and almost lost my life. I can no longer take Coumadin and am on a drug called Eliquis. So far I haven't thrown any more clots that I can positively identify. I have had some strange happenings however and it is possible that I am throwing small clots. So far I am beating the odds!

  • Your post is an inspiration. I am encouraged to know that it is possible to get 20 good years with a heart transplant. What a blessing! What a gift that you have peace now even though your future is uncertain. It is such a powerful testimony that you can be at peace amidst uncertainty and that you can remain grateful for the 20 good years. Thank you for sharing your story. You have much to be thankful for and that is a powerful message.

    • Thank you LuAnn, It's one year later and I am still here - have celebrated 21 years of transplant - and will be 79 in a few weeks. And! I will be a 2ndgreatgrandmother in June. I never dreamed I would see five generations. To me this is a miracle.  We gathered as a family last night (part of us) for some fun time, and as I held four of my great grandchildren in my arms I felt so grateful for my donor and her family. God has indeed blessed me to live a full life.  I have set a goal to celebrate my 80th birthday next year. I am weaker in body, but I truly believe it can and will happen. Again, thank you for the wonderful words you wrote me. They were appreciated more than I can express.

  • Wow! 20 years!!! I'm a newbie, July 28,2016 will be 7 months for me. I'm so grateful for my donor, for if it were not for him/her, I would still be hooked to an LVAD, maybe my third one by now. I had two implanted in 2015. My dr. says all is going well. I had my last biopsy 5/9/16 and the dr. says I will not have another one until my one year anniversary. My ejection fraction rate prior to my transplant was 13% and as of my last dr. visit 7/11/16, it is 60% which is normal. Now if I can start to lose some of he 22 pounds I've gained. :-)  Cardiac Rehab helps, but I only have a few more visits. I hate to join a gym, maybe I'll get back to my walking instead.

  • Dearest Yvonne,

    What a beautiful post and I do remember you well even though you only lurk. We have lost a few heart members but many new have surfaced along the way. Many of our members also like our facebook group so they hang out more often on FB.

    Have you ever thought about seeing another doctor outside of transplant? What was your underlying illness that lead to you needing a transplant?

    From reading your posts over the years, your endearing nature is probably why you are still with us.

    I do not really know about Hospice. If you want to share with us, I am sure others will want to learn.

    I will pray for you and that you find an answer and maybe you can reverse your condition.

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