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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@twocatmama

Thank you all. Before my family member gets to the transplant point, I want to know all the good and bad issues. Of course, I know that only people who had successful transplants are in this site sharing wisdom.

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@twocatmama Welcome to Mayo Clinic Connect. You will find a very wide variety of people here, who have experienced a lot of different things. While we do share wisdom and experience, there are people posting who have had problems with their transplant situations, either before or afterwards. We all need to remember that each person is different, and how one responds to a given protocol may not be the same as the next person. What in particular is a concern for you, that we can help you understand?
Ginger

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@rosemarya

@luckonetj, Tomorrow is a perfect day to celebrate a 1st year Transplantiversary! Hope you can find an opportunity to make it a special day!
Do you remember when you got the Call? Would you like to share some memories of that day?

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I was very sick at MELD 40+. Leslie, my transplant nurse who met me at the intake room was rooting for me every step of the way. Explaining during evaluation what was occurring and why. There were three livers available during the first 4 days on the list in intensive care. The first was too big, the second went to a critical guy who was too sick and did not make it. I entered ICU on 6/23/18 where I was stabilised on hemo dialysis and was put on the list on 6/25/18. I had a Liver transplant early in the morning of 6/29/18. Nurses stand out in my memory. Leslie was the gate keeper sort of speak. She was very good at keeping my expectations high. I was up beat even though I was very ill. All the nurses were special. I will never forget the dream I had while being under during the operation. I was being chased by something nasty. I guess I got away. 😊

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@des46893

I had extreme fatigue after my transplant. It turned out that I had come down with CMV - which I can only describe as mononucleosis on steroids. Once you contract this disease it stays in your system. One of the downsides in having a suppressed immune system.

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@des46893 Please educate us... How did you get CMV? Did you realize you had it from your routine labs? Is it preventable?

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@gingerw

@twocatmama Welcome to Mayo Clinic Connect. You will find a very wide variety of people here, who have experienced a lot of different things. While we do share wisdom and experience, there are people posting who have had problems with their transplant situations, either before or afterwards. We all need to remember that each person is different, and how one responds to a given protocol may not be the same as the next person. What in particular is a concern for you, that we can help you understand?
Ginger

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My family member is still in the disruptive balancing part of liver disease. As I read these thoughts and experiences I only get a sense of success stories which I am so glad to read. I appreciated the pharmacology information. We are not people of means and I am fearful that this operation might wipe us out financially.

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@twocatmama

My family member is still in the disruptive balancing part of liver disease. As I read these thoughts and experiences I only get a sense of success stories which I am so glad to read. I appreciated the pharmacology information. We are not people of means and I am fearful that this operation might wipe us out financially.

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Do you have insurance?

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In reply to @twocatmama "Yes." + (show)
@twocatmama

Personally, my case is a insurance night mirror. I dispute every item that should be paid by the insurance company. I do not recommend healthnet. Most insurance plans cover transplants and after care for up to Six months. If your loved one is on SSI disability and can Waite a year or so to get on Medicare. This is a option. There are no in the transplant business. The doctors are more into your health than money. Dive in and say your prayers.

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@luckonetj

Personally, my case is a insurance night mirror. I dispute every item that should be paid by the insurance company. I do not recommend healthnet. Most insurance plans cover transplants and after care for up to Six months. If your loved one is on SSI disability and can Waite a year or so to get on Medicare. This is a option. There are no in the transplant business. The doctors are more into your health than money. Dive in and say your prayers.

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Thank you.

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In reply to @twocatmama "Yes." + (show)
@twocatmama

@twocatmama I hope your insurance plan is a good one, as mine was. I paid virtually nothing. If it hadn't been able to pay we would have sold our home to pay for it but we did not need to come to that. I know of one person who put up a Gofundme but she did that without even knowing what her insurance would pay. You do need to find out first what you are dealing with in terms of expense.
JK

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In the first round of tests and exams at Mayo, I met with a financial associate in order to review my insurance coverage. As far as I know, and I could be wrong, but transplant hospitals will require adequate coverage prior to approving the continuation of services. I was lucky too and my insurance covered literally everything except a small deductible. Please check with your hospital's financial/insurance person and your own insurance company.

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