Preparing for a heart transplant: Would love to chat with others

@jbilton, Thank you for the update. It is so good to hear that right now he just needs a medication adjustment! Sleep well tonight.

@jbilton Hello and I am sorry I was unable to reply prior to your appointments. I received my new heart in January 2017 at Mayo in Phoenix.
I have not kept up with the responses here but I pray that all went well with the doctors and staff. It can be overwhelming, but in a good way. Everyone is caring and working for your best. If you haven't already, I would be interested in hearing how it went and what's next.

@jbilton i got my heart on Jan 5 and release from hosp jan 17th. My wife and i stayed in a hotel until first week of February. First 2 weeks after discharge i was back at Mayo every day during the week. I live 1.5 hours from Mayo Phoenix so by feb they were only a couple of times a week so we drove from home. Makes for a long day though. I was in heart rehab 2 times a week for 16 weeks. I was able to find a rehab center at another hosp only 40 min from home which cut down the drive. I would still use the hotels on occasion when we had a few days worth of apts. I was lucky tht my insurance reinbursed me for hotels up to 5000. The first year. I hope i answered al your questions. Sorry for the late reply im still in the hosp. But finally trying to get thru all my emails.

@lisalucier hi Lisa, well basically they are a little baffled whay my blood counts are still low and im still getting fevers. They took me of of cellcep and put me on sirilimus think that had something to do with the issues. But in tru Mayo way they have not given up and im confident they will figure it out. Basically i know of 3 virus 2 i had since transplant. CMV from donor heart which has not really caused any issues, Parvo b19 which is one of the culprits and c diff which has been a problem with my bowels. I willl say im starting to feel a little better and hopefully soon we will have it solved.

Thank you for the reply that gives me a time line and some other useful information. I hope you are out of the hospital soon and back to living the good life!

@danab, I send you my thought and hopes for continued progress.

@danab It sounds as if they are on top of your problems, I hope they solve all of them soon so you will be 100%.
I have been having monthly lab work (transplant was in September 2016) and my blood counts are always slightly below the range, but not so low that they are alarmed. In fact everything has been so good and so consistent that I now only have to get my lab work done bi-monthly.
I was switched from tacrolimus to sirolimus because the tacrolimus was having an effect on my kidneys. Things are good now, as long as I drink a lot of water -- 80 - 100 ounces a day.
Looking forward to hearing when they finally have all of this resolved for you.
JK

@danab, how are you doing?

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.

@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.