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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@estrada53

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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Mayo would not put me on the active list at UNOS until my insurance approved to pay for my transplant

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Here is some more information about transplant costs from the UNOS Transplant Living site.
https://transplantliving.org/financing-a-transplant/
@twocatmama, this might give you some ideas about costs as well as support/resources that are available.

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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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I'm so lucky I live in Canada. Everything was paid for while in hospital including surgery, room, medications and doctors. My husband's insurance plan at work (minimal monthly payments) covers 80% of my medications and the government covers the rest. It was relatively no cost for us.

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Thank you. We’ll certainly need fir our insurance to step up.

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@estrada53

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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@estrada53 Unfortunately I believe you are correct. Transplants are hugely expensive and hospitals do need to get paid. It doesn't seem fair but that is how it is from what I have heard. I think they don't just check your insurance, but if your insurance is not adequate I believe they also check your assets to see if you have the ability to pay. Not only is the transplant expensive but the immunosuppressants afterward are very costly too.
JK

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@twocatmama

Thank you. We’ll certainly need fir our insurance to step up.

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@twocatmama I had quite a time to convince the company that approved all procedures for my insurance company - yes, there are more than one company involved in all of this - that I did not need a lung and heart transplant, but only a heart transplant. Because my heart failure was due to sarcoidosis, which mainly affects the lungs in nearly everyone, this "approver/counselor" thought I would need new lungs as well. That was definitely not the case. My husband had to call and ask to speak with a supervisor and request another "counselor" for me. I was in tears because of her difficult attitude as she was not approving the transplant to be covered. And we had great insurance. So, this doesn't mean that the same thing will happen to you; however, do not be reluctant to push the envelope with your insurer. This is a life we're talking about and we have all paid our dues/premiums for so long. I wish you speedy success.

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@estrada53

@twocatmama I had quite a time to convince the company that approved all procedures for my insurance company - yes, there are more than one company involved in all of this - that I did not need a lung and heart transplant, but only a heart transplant. Because my heart failure was due to sarcoidosis, which mainly affects the lungs in nearly everyone, this "approver/counselor" thought I would need new lungs as well. That was definitely not the case. My husband had to call and ask to speak with a supervisor and request another "counselor" for me. I was in tears because of her difficult attitude as she was not approving the transplant to be covered. And we had great insurance. So, this doesn't mean that the same thing will happen to you; however, do not be reluctant to push the envelope with your insurer. This is a life we're talking about and we have all paid our dues/premiums for so long. I wish you speedy success.

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A little bit of learning is a dangerous thing! I am so glad it worked out for you.

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@luckonetj

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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@luckonetj, I want to invite you to share about your special nurse in the discussion, Best nurse EVER! https://connect.mayoclinic.org/discussion/best-nurse-ever/

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@gary1864

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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@gary1864, How are you doing? Did you get to see the new doctors? I hope that you have found some answers and are beginning to feel better. Rosemary

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