Hi, My father has not had any allergic reactions to his medications. As mentioned by @contentandwell, he did have diarrhea caused by his immunosuppressant.
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Jul 19, 2018 · Just wondering...sometimes after the call, it doesn't work out? in Transplants
@rosemarya My dad had his one year heart birthday/anniversary on July 12th. We celebrated with a nice dinner and his buddies got him a birthday cake with one candle and sang "happy heart birthday". We also celebrated the all the health care professionals including everybody in CVICU with birthday cake. We do not know anything about the donor so just a special thank you to up above.
Jul 17, 2018 · Just wondering...sometimes after the call, it doesn't work out? in Transplants
@jodeej, that is great news! Wishing him a speedy recovery. Remember to take care of yourself as well.
@jodeej My father had a heart transplant a year ago (7/12/17). This was something they did tell us was a possibility, that he could be called and then not receive the transplant. He had already been in the hospital for about 2 weeks when the call did come. (listed for about 6 weeks) It was probably the longest day ever! We had to wait for everything to align so the surgeon could get the heart. We don't know anything about the donor except the donor was a young female outside of our area and our surgeon had to fly to pick up the heart. Once our surgeon arrived at the donor's hospital and saw the heart he called our other surgeon to say the surgery was a go. They then relayed the information to us that the heart was confirmed. It had been 20 hours from the time we received the call to the time we received confirmation the heart was good. We did not tell extended family or friends that we received the "call" until the heart was confirmed. It seemed easier to us in the event the transplant wouldn't happen. I also know one heart was passed up because my dad had an infection and his doctors and surgeons didn't feel it was the best time or best heart for him. The wait seems so long and can be very difficult. My dad doesn't remember much from the time he went in the hospital to a few months after the transplant. He seems surprised when I tell him things. Just remember you want the best match at the best time! The doctors and surgeons will see to that. I, personally, also believe God does too. Take care and best wishes for a perfect transplant soon!
Hi Rachel @buckeyegurl
Wow! You have been through so much already! My father received his heart transplant in July 2017 after being on the list just under 2 months. He was very fortunate not to have a long wait. There is still much anxiety and high emotions during the wait. I can’t speak for him on how he felt but as his daughter and primary caregiver I was more concerned with him and his stress than my own. I was determined to stay strong for him and I would worry about myself later. I feel this is still the case close to five months post transplant. I think (at least for me) you need to allow yourself to express your feelings and fears to your family. Then, stay strong, have faith and know that after the transplant and the recovery life will be great! Hang in there, will be thinking of you! 🙂
So sorry to hear you are in the hospital currently. Hoping you are able to go home soon! He is unable to the leave the house while his count is so low (1.5) even with the mask. NP is working on new script for more home therapy (pretty much unlimited). Once his count is higher he will be able to go to outpatient with a mask.
Hoping and praying your are able to go home today! 🙂
Thanks for the information. Hope all is well now. His steroids have been decreased to 7.5mg a day and next week down to 5mg a day. Can’t wait for him to be off of them completely. They changed his Cellcept late last week and he will be coming off of Bactrim next week. He is currently taking Bactrim only three days a week. Hoping with the change in meds the GI issues will improve. His white blood cell count is really low so he is currently staying home and no visitors until that starts to come up. That really hurt him emotionally. He will start a low dose of Zoloft this week for a few months to get him through these harder times. He is extremely weak and has lost a lot of muscle strength and balance. He had home therapy the first couple of weeks post transplant and was released. As the GI issues increased he stopped doing his exercises. I was able to set up home therapy again, he has had two visits but they will only come out one more time. I will have to make some calls to get additional visits. Three visits will not help him recover his strength.
Thanks again @amynewheart and I hope you are doing well with your new heart!