@kellysmith1215 Kelly, for me life after transplant was not much different than it had been prior to my diagnosis and transplant. I was able to keep up with most of my normal activities while waiting for a transplant, cutting back a very small amount, and then after transplant things just resumed. It was way better than it had been while waiting though, primarily because the medications (lactulose) really bothered me. Thankfully I had a reprieve from it for a year after starting xifaxan but then things got worse and I had another HE episode so I had to resume taking lactulose along with the xifaxan. I had some nausea also but the nausea medication made me feel even sicker so I didn't bother taking it. One of the nausea medications would totally knock me out for over a day.
The biggest change though, other than no longer having to deal with those medications, was an increase in my spirituality and my concern for other people. I have always been an empathetic person but now I find it actually hurts ME when I know of other people going through a lot. I am grateful every day for being here and I consider each day to be a gift.
There are some negatives associated with the immunosuppressants of course but that's the price we pay, and it's of course worth it.
So, yes, after transplant life will definitely be better, in my experience.
JK

@kellysmith1215 Do you have Medicare D? That of course pays for many of the drugs but Medicare B pays for the immunosuppressants and I have had to pay very little. Someone on here mentioned that only lasts for 3 years, Medicare B paying, does anyone else know about that? You should look into your Medicare B covering these drugs.
I am sorry about your other troubles, it sounds unbearable to have lost so many people close to you. I cannot imagine losing one of my children, to me that is the worst because it is just not the natural order of things, plus my kids are so important to me.
JK

@ca426 As I asked in my last response, after three years does Medicare D pick up the immunosuppressants or does the patient have to pay for those? As typical of most of the Medicare supplementals, mine covers only things that are covered by Medicare, and picks up what Medicare does not pay, like that 20%, so if Medicare is not covering the drugs at all I doubt my supplemental will.
JK

Hi @kellysmith1215 and welcome to Mayo Clinic Connect. We're glad to have you here. @keggebraaten and I maintain the transplant blog on Connect, last year we interviewed a pharmacist and social worker from our transplant center on the topic of transplant medications. I'm sharing that post with you here as it might provide some helpful tips on how to save money on your post transplant meds. What other questions do you have? https://connect.mayoclinic.org/newsfeed-post/how-to-save-money-on-your-medications/

Thank you for the insight.

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

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.

@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

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..

Thank you ..