Preparing for a heart transplant

Posted by jbilton @jbilton, Wed, Jun 5 2:39pm

My husband has been referred to the Mayo clinic for a heart transplant evaluation on June 18th. Would love to chat with others who have already been through this process and what time frames and follow ups will be like.

@danab

Well I'm home now and doing great. My appetite has come back which really had me worried. They dtod finally find a fourth virus in my lungs. It took a scope and lung rinse to get the culture needed to prove the virus. It had a long name and i didn't write ot down bit basically they put me back on a heavy dose of bactrum for a few weeks to kill it. So I'm still have some issues with my blood counts and im under the care of a hematologist to monitor things and we are doing a maintenance does of IVIG once a month to help keep the parvo from causing issues. They also lowered my prograf pretty low so to try and get my immune system to help. Hopefully i pray my heart behaves while we continue this treatment.

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@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

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@rosemarya

@danab, Being home with appetite sounds like a positive change. I hope that you can rest comfortably so that your body will regain its strength to do the healing that you need. I am thinking of you and sending prayers heavenward for you.

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I will pray for you too.
Christine

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@christinelouise

I will pray for you too.
Christine

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@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.

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

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@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.

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@christinelouise

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

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@christinelouise, The posts abd 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.

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