Changes after Transplant

Welcome to Mayo Clinic Connect, @kellysmith1215! I'm so glad you found this community! You will find members to be supportive and answer questions you have (and meeting @rosemarya will be a treat- she's lovely) :). I think you are not alone in asking the question "what will life be like after transplant"- actually maybe you would be interested in starting a new thread to discuss just that? If you go to the top of the Transplants page and click on 'start a discussion', that would be great.

If you don't mind me asking, What's led you to your transplant journey?

Hi, @kellysmith1215. I want to welcome you to the transplant Discussion on Mayo Connect.
"Going thru the transplant steps" is a frightening and confusing journey. I am happy to share my personal experience that I, too, have experienced the same feelings and questions that you mention. And from what I have read from our other transplant members, you are not alone!
To answer your 2 big questions "What will your life be like? Will it be better?" - There is no crystal ball that will tell any of us what lies ahead even in "normal" circumstances. I believe that going thru the process is the best and only way to go. Each of our circumstances is as unique as is our treatment and transplant outcomes. Myself, I transplanted a liver/kidney in 2009, and I have never ever regretted the difficult steps that I encountered along the way. I will admit that there was some slow movement with roadblocks along the way - but for me, my New Life is a blessing beyond words.
I invite you to read thru any of our conversations. I welcome you to ask any questions that you have to any of our members. You can direct your question to a particulatr individual by including their @name (just like I did with @kellysmith1215).

What are the transplant steps that you are currently going thru? And what organ will you need to transplant? Are there any resources that we can provide?
I look forward to continuing conversation with you.
Rosemary

Thank you for all your kind words.
The journey for me has been very long. I have polycystic kidney disease. I've had it for 20 yrs .
Along the way i lost my 15 yr old to an overdose of hoffing Freon from our airconditoner & I thought that I would die . then I lost my Mom at 58 yrs old due to polycystic kidney disease. & now my brother is on dialysis & I'm on dialysis.
I just got thru the whole transplant stuff for them to tell me the board approved my case but now because I'm on Medicare I have to raise $3300.00 for the anti rejection medication.
That's my next step.

I'm so sorry that you have so much on your plate.
I will keep you in my prayers.

My heart goes out to you on the loss of your family members, I had my first surgery when I was 4yrs. old , I'm now 54 and I've had 4 kidney transplants, and I'm a little confused about your medication comment....Medicare covers 80% of all anti-rejection drugs and that's for 36 months, do you have a secondary insurance ? I never been told to raise money for my anti.. drugs, they only told me the information, incase my insurance didn't cover it.

Tampa General Where I live. They even sent me a letter stating i only have 6 months to get the money together or i will be kicked out of the program.
And then i would have to start all over.
I asked the coordinator why doesn't my Medicare Drug coverage pay for it.She said they don't pay for some of the meds & the rest is for your 20% copay

@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

@contentandwell: what medication did they give for nausea? I was taking Ondansteron but it didn't work for me. Just stuck with Gravol.
I also take Domperidone 30 mins before each meal.

@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