Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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Thank you & I'm not sure why the coordinator is saying i have to raise so much money than. I believe she said 1 yr after the transplant you loose all your benefits , SS & Medicare. I need to call Medicare today & find out the truth from them.
Thanks everyone

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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If your under 65 check into Florida Blue OPTIONS plan. I'm a Mayo patient up in Jacksonville. There are different Option plans. I'm not sure about Tampa General. I worked backwards. I dealt with the insurance person for transplants at Mayo then contacted Florida Blue. Insurance controls where I live because a lot of individual health policies do not include Mayo.

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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@kellysmith1215, Hi Kelly, I think that you are absolutely doing the best thing by taking matters in your own hands and contacting Medicare yourself about your own situation. I hope that you can get to speak to a real person within a reasonable amount of time. I suggest that you also get the name of the person you speak with and any reference numbers in case you need them for future reference.
Are you on dialysis, or will you be on dialysis? That, too, is something to discuss with Medicare when you call them.

I congratulate you on your proactive approach to your own care! I wish you the very best possible outcome.
There should be a social worker in your transplant dept who can also assist you when you get the information. I have learned that at different transplant centers that the role of the coordinator can be different.

Kelly if you ever want to address a particular person, you can use their @name just like I did at the beginning of this reply.
Keep in touch, and know that we are here for you.
Rosemary

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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Yes i have been on dialysis for almost a year now.. I do home hemodialysis. But yes I'm going to ask them every question i can think of.
The coordinator at Tampa General that I have in my opinion is terrible. She doesnt get back to you & she doesn't give good advise or any good help at all.
That's 1 reason I'm sticking with the Mayo Clinic in Florida..

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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Thank you ..

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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@kequick Thank you, great info in that link. I am a year and a half post-transplant. At this point, Medicare B pays for my immunosuppressants but someone on here said, a while ago, that is only for three years. If anyone else on here has gone through that, and had Medicare B stop paying, how well have the immunosuppressants been covered by Medicare D?
JK

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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@kellysmith1215 It sounds to me as if your coordinator is not as well informed as she should be. I get frustrated because the nurse who is the first point of contact is also not as knowledgeable as I think she should be. I actually sent a message on the portal to an NP there hoping she could help me but I got a message back from the other nurse, and in it she informed that ALL the messages go through her first. In other words, I had better be darned careful of what I say! She is always vague and basically gives me a non-answer.
JK

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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Does Medicare part b pay for all tour medication?

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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@kellysmith1215, Here is the link to the CENTERS for MEDICARE & MEDICAID SERVICES Medicare Coverage of
Kidney Dialysis & KidneyTransplant Services

This link opens the official government booklet on line.
It explains: The basics of Medicare, How Medicare helps pay for kidneydialysis and kidney transplants, and Where to get help
https://www.medicare.gov/Pubs/pdf/10128-Medicare-Coverage-ESRD.pdf

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@wkary

Absolutely! I was far from creative prior to my live tx. Since I want to learn to draw, sketch and design.

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@kellysmith1215 Hi Kelly, I presume that question was directed at me.
Medicare B pays for my immunosuppressants, all other drugs are covered by my Medicare D, even prednisone which is something that most people take post-transplant but is not an immunosuppressant. Frankly, I'm not sure why prednisone is necessary, but I do take a small dose of it.
JK

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Medicare pays for anti-rejection medication for 36 months, trust me I've been Medicare since 1995 but I've 4 kidney transplants and so in my caes that doesn't apply….but it haa always been 36 months until they change it, NKF has been trying to get changed for several years now.

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@garyandrade

I have no logical explanation other than I understand this is very common. I have also heard that this is quite common for any major abdominal Surgery. My taste buds have changed for sure but nothing quite that drastic. My surgeon seems to think there is a link to the chemicals in the anesthesia. Many changes have been for the good… I really can't stomach a Big Mac which is probably a blessing in disguise. My rebirth date is August 12 of 2015 so even today I'm still finding new things about my body.

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@bexhall there is much that is not scientifically explainable yet indisputable. Science has recently accepted the so called newly found glymphatic system (lymphatic drain system) in the brain & mesenteric organ (transparent lining that is part of peritoneal fold) around our abdomen & other organs. In fact there was a time science claimed the earth was flat yet Christian bible literature described it as round. Native Americans refer to the Great Spirit & spiritual ancestors & now we know matter can change form.. Let's not deny those believers of aliens are backed by circumstantial evidence.
Do our cells not carry DNA of our past and present experiences as we evolve & overcome disease, disaster & adaptation? Malaria/ Sickle Cell is a fine example of cell memory as well as anything we become immune to through contraction.
With that said whoever gets my kidney may have a taste for salt & vinegar chips with distaste for legumes, unbelievable empathy with an unquenchable curiosity.

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@garyandrade

I have no logical explanation other than I understand this is very common. I have also heard that this is quite common for any major abdominal Surgery. My taste buds have changed for sure but nothing quite that drastic. My surgeon seems to think there is a link to the chemicals in the anesthesia. Many changes have been for the good… I really can't stomach a Big Mac which is probably a blessing in disguise. My rebirth date is August 12 of 2015 so even today I'm still finding new things about my body.

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@beckyjohnson they will be very lucky!

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@garyandrade

I have no logical explanation other than I understand this is very common. I have also heard that this is quite common for any major abdominal Surgery. My taste buds have changed for sure but nothing quite that drastic. My surgeon seems to think there is a link to the chemicals in the anesthesia. Many changes have been for the good… I really can't stomach a Big Mac which is probably a blessing in disguise. My rebirth date is August 12 of 2015 so even today I'm still finding new things about my body.

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@jodeej It is I who will be the lucky one like the drummer boy at the manger where Jesus was born.

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@ca426

Medicare pays for anti-rejection medication for 36 months, trust me I've been Medicare since 1995 but I've 4 kidney transplants and so in my caes that doesn't apply….but it haa always been 36 months until they change it, NKF has been trying to get changed for several years now.

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@ca426 Charlie, so after Medicare B stops paying does Medicare D pay well or do they only pay a small amount? I know that often depends on whether or not the drug is a generic or not and I think my immunosuppressant is, unfortunately, not a generic but I'm not sure.

As I have mentioned, Medicare D did pick up some of the cost of my xifaxan but not all, we still had to pay between &700 and $800 a month.
JK

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