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.

@jbilton

Ours prayers back to you as well. We will be there on the 18th for the day. My husband is overwhelmed at the prospect of this but sounds like that is normal. Take care.

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@jbilton, It is normal to be overwhelmed. The Transplant team will walk you thru every step of the way. I suggest that you begin a list of questions and take them with you. I used to sit in the waiting room and add to my list, but usually my team answered them before I even asked them! They are that good at Mayo.
I will send prayers also.

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@jolinda

@jbilton Welcome to connect! I just got back from two days at Mayo Clinic in Rochester, I received a kidney transplant there several years ago. I can assure you it is a beautiful place with and abundance of caring and competent professionals. In my opinion the very best place to stay while you are in the transplant process is The Gift of Life Transplant House (507) 288-7470. If you would like to stay there when your husband had his transplant you can take a tour while you are there in a few weeks. You will be surrounded by others who are going through transplants and caring for loved ones who are healing. Please keep us posted through you process, we are all here to lend and ear, say a prayer and offer whatever support we can. Blessings to you and your hubby.

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@jbilton hi sorry for the late reply im actually back in the hospital due to a virus but the Hearts doing great. Im 15 months post and the transplant process went smooth. I had a a pretty bad heart coming in to my eval i was already in the hospital trying to save my old heart. During my evaluation my heart got so bad that it came to the point the only option was a transplant. Praise God i got a heart quickly in about 5 days. Being faily weak due to 2 months in the hospital prior to the transplant. But i was driving again about 6 weeks after and by 6 months was walking Long distance and starting to feel pretty normal. By a year i was hiking and playing golf again. Ask any question you have. Good luck

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Thanks for your reply. We have arrived in Jacksonville and will start our journey tomorrow. It was encouraging to see that you were driving in 6 weeks. How long were you in heart rehab and still in patient? How frequent were your appointments for follow up? Just curious as to the logistics of not living in Jacksonville.

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@jbilton

Thanks for your reply. We have arrived in Jacksonville and will start our journey tomorrow. It was encouraging to see that you were driving in 6 weeks. How long were you in heart rehab and still in patient? How frequent were your appointments for follow up? Just curious as to the logistics of not living in Jacksonville.

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Hi, @jbilton – hoping all goes well as you start your journey in Jacksonville. Hoping that @danab will have more information on how long rehab lasted while still inpatient and also frequency of follow-up appointments.

danab – how are things going with your virus and time in the hospital?

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Thank you! We are back home and very pleased with our first trip to the Mayo Clinic in Jacksonville. They are going to tweak some medications and watch fluid and sodium intake for now. Another visit in a month. So… maybe no heart transplant in the near future for my husband. We are happy for this news.

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@jbilton

Thank you! We are back home and very pleased with our first trip to the Mayo Clinic in Jacksonville. They are going to tweak some medications and watch fluid and sodium intake for now. Another visit in a month. So… maybe no heart transplant in the near future for my husband. We are happy for this news.

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

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@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.

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@jbilton

Thanks for your reply. We have arrived in Jacksonville and will start our journey tomorrow. It was encouraging to see that you were driving in 6 weeks. How long were you in heart rehab and still in patient? How frequent were your appointments for follow up? Just curious as to the logistics of not living in Jacksonville.

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@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.

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@lisalucier

Hi, @jbilton – hoping all goes well as you start your journey in Jacksonville. Hoping that @danab will have more information on how long rehab lasted while still inpatient and also frequency of follow-up appointments.

danab – how are things going with your virus and time in the hospital?

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@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.

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@danab

@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.

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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!

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@danab

@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.

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

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@danab

@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.

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@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

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@danab

@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.

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@danab, how are you doing?

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@colleenyoung

@danab, how are you doing?

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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, 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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