1. < Transplants

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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 20, 2019
In reply to @luckonetj "No I was not hospitalised for the flue. I stayed in bed for a day. The..." + (show)
@luckonetj

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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@luckonetj, That experience must have been frightening. Thank you for sharing the good news about your continuing improvements.
I am curious, Did you have a flu shot?

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2 replies
luckonetj | @luckonetj | May 20, 2019
In reply to @rosemarya "@luckonetj, That experience must have been frightening. Thank you for sharing the good news about your..." + (show)
@rosemarya

@luckonetj, That experience must have been frightening. Thank you for sharing the good news about your continuing improvements.
I am curious, Did you have a flu shot?

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No flue shot. I had a bad reaction. Pre transplant.

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newliver1 | @newliver1 | May 20, 2019
In reply to @danab "Yes the first few weeks cam be a challenge. I had a heart transplant at Mayo..." + (show)
@danab

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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Thank you so much for for you respond and is nice to know is someone been or going tru this so we feel little better

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1 reply
newliver1 | @newliver1 | May 20, 2019
In reply to @gingerw "@newliver1 Let me add my congratulations and welcome to Mayo Connect also! My suggestion because you..." + (show)
@gingerw

@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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Thank you Ginger and thank you for you advice of the journal is a great idea went I went to doctor today with my husban I got a note book last night and we write down everything all my husband symptoms and that help because we ask allot Question and we was please with doctors answers thank you so much

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newliver1 | @newliver1 | May 20, 2019

Hi just want to update on my husban today we went to Se his liver doctor and he got a blood work his blood work come up little better than las time they ask him to take more diuretic for his swelling of his legs and she ask to take 5 mg extra of prograf and Tylenol for the pain she said all his symptoms are normal and that if anything Change just call thank you all for the support

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2 replies
newliver1 | @newliver1 | May 20, 2019
In reply to @rosemarya "@luckonetj, That experience must have been frightening. Thank you for sharing the good news about your..." + (show)
@rosemarya

@luckonetj, That experience must have been frightening. Thank you for sharing the good news about your continuing improvements.
I am curious, Did you have a flu shot?

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Thank you Rosemary for you advice and support

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benlam11 | @benlam11 | May 20, 2019
In reply to @newliver1 "Thank you so much for for you respond and is nice to know is someone been..." + (show)
@newliver1

Thank you so much for for you respond and is nice to know is someone been or going tru this so we feel little better

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Thank You so much for the encouragement.

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 20, 2019
In reply to @newliver1 "Hi just want to update on my husban today we went to Se his liver doctor..." + (show)
@newliver1

Hi just want to update on my husban today we went to Se his liver doctor and he got a blood work his blood work come up little better than las time they ask him to take more diuretic for his swelling of his legs and she ask to take 5 mg extra of prograf and Tylenol for the pain she said all his symptoms are normal and that if anything Change just call thank you all for the support

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@newliver1 Lots of times there are slight medication changes, not only for transplants but other health issues also. Keeping track of things may seem like a chore, but believe me, it helps to have it down in writing so you can refer back to it. We found that very helpful. With my husband's transplant team for his kidney, it almost became a joke as they would ask me for my notes and then go over everything, but they said they wished all patients would be so thorough. And also ask us if we had questions. The feeling was we were serious about making this work, so we took his recovery seriously.
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 21, 2019
In reply to @newliver1 "Hi just want to update on my husban today we went to Se his liver doctor..." + (show)
@newliver1

Hi just want to update on my husban today we went to Se his liver doctor and he got a blood work his blood work come up little better than las time they ask him to take more diuretic for his swelling of his legs and she ask to take 5 mg extra of prograf and Tylenol for the pain she said all his symptoms are normal and that if anything Change just call thank you all for the support

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@newliver1, It is always good news to hear the words, "It is normal". In truth, the whole transplant process is new for us, and we are developing a new normal. I am happy that your husband is progressing forward since his transplant.

I want to share some post transplant information that you can refer to when your husband returns home to continue recovery. You are invited to join in anywhere if you have a question or idea to share.
Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/?pg=1#chv4-comment-stream-head with transplant recovery,

TransplantSelf-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/self-care-tips-for-transplant-patients/

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JK | @contentandwell | May 26, 2019
In reply to @luckonetj "Hi Gary ,You look well. I to had a liver transplant almost a year ago. My..." + (show)
@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 Some people experience "post flu syndrome" and are fatigued for a long time after having the flu. I remember my brother went through that once, quite a while ago. Hopefully, that will resolve in not too much more time, but at least in the meantime you have a great attitude. Keep that up.
JK

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