Post Transplant Symptoms

Posted by gary1864 @gary1864, Apr 28, 2019

It has been 3 1/3 years since my liver transplant. I am going to describe the symptoms that I have every waking moment of every day. It feels like the morning after you have been up all night without any sleep. A heavy, leaden feeling. My doctors don’t listen to me.

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Hi Gary ,You look well.
I to had a liver transplant almost a year ago. My energy level was just fine for months after surgery. I caught the flue last month and since then I have had a feeling of listlessness. Similar to a low grade head cold. This makes it hard to focus. It helps me to stay on schedule with all activities. For me, it's easy to procrastinate when not feeling 100%. It helps to wake up each morning a force a attitude adjustment. Each morning along with preparing meds. I meditate and say, " I will persist until I suceed.I will start each day with love in my heart.I will laugh at the world. Today I begin a new life". It helps me focus on what's ahead of me. Feeling 100% or not.

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Hello,
Thank you so much for writing. I am going to be making a concerted effort to see if I find out what it is that I am experiencing. I have already made two appointments with doctors in different fields of study. The kind thoughts and words of encouragement that I have received from people, including yourself, helped me to ‘push on’ and try again, rather than staying in a pattern of depressive resignation. I thank you again for writing, and wish you the very best! Much happiness to you!
Gary

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@luckonetj

Hi Gary ,You look well.
I to had a liver transplant almost a year ago. My energy level was just fine for months after surgery. I caught the flue last month and since then I have had a feeling of listlessness. Similar to a low grade head cold. This makes it hard to focus. It helps me to stay on schedule with all activities. For me, it's easy to procrastinate when not feeling 100%. It helps to wake up each morning a force a attitude adjustment. Each morning along with preparing meds. I meditate and say, " I will persist until I suceed.I will start each day with love in my heart.I will laugh at the world. Today I begin a new life". It helps me focus on what's ahead of me. Feeling 100% or not.

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@luckonetj, I really like your positive and persistent attitude! I am sorry that you caught the flu. Were you hospitalized?

Since my transplant I have realized that my body takes a longer time to recover from anything. This could be a bruise, a small cut, a cold, or even extra rest after a playdate with granddaughter. I have come to celebrate it as the new me. I listen to my own body because it lets me know if I am overdoing anything. This is just a thought that I wanted to share, maybe your immunosuppressed body is taking its own good time to fully recover.
Has your transplant team been doing any follow-up since the flu episode?

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Hi my name is Isabel my husban name Jasón he got a liver transplant on 05/05/2019 we so grateful because he have another chance of life but he is no feeling to good his legs are swelling really bad and he have allot pain inside of the incision don’t know if is normal his surgery was at Mayo Clinic and we went there Friday and they said everything was good his blood pressure is good but he have temperature off 99.5 and he have a dearhea which they said is good to just want to know if anyone went tru the same symptoms we going to see doctor tomorrow and I will update thank you for read my comment

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@newliver1

Hi my name is Isabel my husban name Jasón he got a liver transplant on 05/05/2019 we so grateful because he have another chance of life but he is no feeling to good his legs are swelling really bad and he have allot pain inside of the incision don’t know if is normal his surgery was at Mayo Clinic and we went there Friday and they said everything was good his blood pressure is good but he have temperature off 99.5 and he have a dearhea which they said is good to just want to know if anyone went tru the same symptoms we going to see doctor tomorrow and I will update thank you for read my comment

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Yes the first few weeks cam be a challenge. I had a heart transplant at Mayo and i know they take all symptoms seriously. I was on a pain killer for about a month to 6 weeks and then Tylenol after that. But i remember the hardest part was getting up and down. The pain intensified then. The other problem was food. The taste of food do to the drugs was lousy bet i find a few foods i could stomach and that too passed as the level of drugs comes down. When it comes to temp for me at least the magic number was 101.4 befor the drs got concerned. Btw im now 16 months post and everything is pretty normal so as a 19 year veteran of his transplant told me listen to the doctors and you will do well. Btw my Mayo in phonex has a support group mi is heart but ask maybe the have a liver one also. I always enjoy talking to other people when im there. But this forum is awesome also. If i can help with anything please ask

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@newliver1

Hi my name is Isabel my husban name Jasón he got a liver transplant on 05/05/2019 we so grateful because he have another chance of life but he is no feeling to good his legs are swelling really bad and he have allot pain inside of the incision don’t know if is normal his surgery was at Mayo Clinic and we went there Friday and they said everything was good his blood pressure is good but he have temperature off 99.5 and he have a dearhea which they said is good to just want to know if anyone went tru the same symptoms we going to see doctor tomorrow and I will update thank you for read my comment

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@newliver1, I want to extend my welcome and my congratulations to you and your husband as you begin your new life with his new liver.
At 2 weeks post transplant, his body is going to be hurting from a major surgical procedure. I transplanted 10 years ago, and so my memory of the immediate post surgery period has faded away.
I understand your concern, and with it being a weekend, I imagine you were quite worried. Are you aware that there is a 24 hour phone contact to Mayo Transplant?

The transplant team at Mayo will know what is or isn't normal at this stage of recovery. Right now, he is likely on major medications, and there will be continuously adjusted as time passes.
I am interested to hear how his doctor visit goes today. I look forward to hearing from you.

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@newliver1

Hi my name is Isabel my husban name Jasón he got a liver transplant on 05/05/2019 we so grateful because he have another chance of life but he is no feeling to good his legs are swelling really bad and he have allot pain inside of the incision don’t know if is normal his surgery was at Mayo Clinic and we went there Friday and they said everything was good his blood pressure is good but he have temperature off 99.5 and he have a dearhea which they said is good to just want to know if anyone went tru the same symptoms we going to see doctor tomorrow and I will update thank you for read my comment

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@newliver1 Let me add my congratulations and welcome to Mayo Connect also! My suggestion because you are worried about your husband's symptoms, is to keep a journal of what you observe and what he observes feels, so you can answer the doctors' questions when they have some. I remember when my husband had his kidney transplant although I was not there everyday during his recovery [we were not married yet and his transplant was 4 hours away from where I was living, so his daughter and I took turns caring for him the first month] it was nice to have notes that I kept so that when the transplant team asked questions they could look to me and get some answers, as he didn't really think too much about keeping notes himself! We are glad you're here and we look forward to hearing your progress reports as you and your husband journey forward.
Ginger

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@newliver1

Hi my name is Isabel my husban name Jasón he got a liver transplant on 05/05/2019 we so grateful because he have another chance of life but he is no feeling to good his legs are swelling really bad and he have allot pain inside of the incision don’t know if is normal his surgery was at Mayo Clinic and we went there Friday and they said everything was good his blood pressure is good but he have temperature off 99.5 and he have a dearhea which they said is good to just want to know if anyone went tru the same symptoms we going to see doctor tomorrow and I will update thank you for read my comment

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The first week was full of hope and learning to walk with weak muscles. I was re-admitted due to a liver rejection scare. Had a liver biopsy and intravenous tacrolimus therapy. In the hospital for two days and all was well. My liver team is very thorough. My chest never hurt. I was told it would be numb due to lack of nerves in that area. The stiches were a bit soar as I healed but eventually desolved. I developed a fany- pack system for my daily pills. 5 small Tupperware containers with time stickers on the lid. If you get side-tracked, you can quickly look to see if you missed your meds.

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@rosemarya

@luckonetj, I really like your positive and persistent attitude! I am sorry that you caught the flu. Were you hospitalized?

Since my transplant I have realized that my body takes a longer time to recover from anything. This could be a bruise, a small cut, a cold, or even extra rest after a playdate with granddaughter. I have come to celebrate it as the new me. I listen to my own body because it lets me know if I am overdoing anything. This is just a thought that I wanted to share, maybe your immunosuppressed body is taking its own good time to fully recover.
Has your transplant team been doing any follow-up since the flu episode?

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No I was not hospitalised for the flue. I stayed in bed for a day. The flue coincided with neuprogen injections to boost my WBC for a upcoming thorocyntethys procedure. I think the booster may have helped shorten the flue. Anyway had the pleurol effusion drained last week. Only 350 c.c this time down from over a liter. This time I was a bit more soar. The good new is that I Don't expect to have the Pleurodesis.

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