Kidney transplant - The Journey from the Donor's Side

@beckyjohnson, I wish for you to have safe travels and a comfortable evaluation process. I hope that all of the tests and procedures will bring results that will lead you forward toward your goal of being a donor for someone. I want to assure you that what you are about to do is an example of hope and an inspiration to others who might be considering this decision themselves.

You are already a Hero because you took the 1st step.

Hugs and prayers,
Rosemary

I can’t imagine what changed. I received my kidney 20 years ago and Medicare has always had, and is still paying for my meds. Have you called Medicare? I’m going to do it right now and will get back to you.

I’m fairly new on this site. I posted a reply earlier, but don’t see it. I just spoke with Medicare and this was their reply: if the recipient is receiving Medicare solely because he has end stage kidney disease, Medicare will only pay for drugs for 3 years. If they are receiving benefits due to age, they will pay forever. I had group insurance at the time and it was so long ago, I don’t remember who covered what. If I can help at all, let me know. Do you know how old your recipient is?

I’ve a not so good experience with Advocate My Meds. I would suggest that you contact the manufacturer of your meds to see if they have a Patient Assistance Program ( whether or not it’s a transplant drug). I was prescribed a drug for osteoporosis that cost $1,300 a month after Medicare paid their portion. I contacted the manufacturer, Eli Lilly, and it looks like I can get it from them for free. Worth a try.

It is actually, its age or if you had a transplant and were already disabled during the time of transplant and it was in a Medicare approved facility. Then immunosuppressive drugs for lifetime.

@mauraacro I appreciate the generous offer to @cleverusername to share your personal contact information to answer questions etc. However, I'd also like to underline the benefit of sharing here on the forum. It was because of the sharing here that @cleverusername was able to find these conversations in the first place. By asking questions and getting answers here, you will both be creating a treasure trove of valuable information and first hand experience for future donors. I encourage you to continue your exchange on Connect and thank you for being willing to do so.

@coquifoife, I want to say Welcome to Mayo Clinic Connect. I have been unplugged and I have been trying to catch up. I am happy that ypou have joined this conversation.
I am a liver/kidney recipient in 2009, deceased anonymous donor. I am honored to meet you, a 20 year recipient. I see that your wonderful daughter is your donor. She is an amazing girl for doing that for you. I know you are proud of her as she is proud of you!

I want to invite you to look at, and to participate in any of the discussions - especially the Transplant Discussion Group and the Kidney Bladder Group where others are talking about their experiences and are asking questions.

I also want to share the Transplant Pages, - https://connect.mayoclinic.org/page/transplant/ - where the 'Newsfeed' is updated regularly by the Mayo Staff. Comments are always welcome there, too.
Take a look at the recipient toolkit and the donor toolkit. How does the living donor and living kidney process changed since you participated 20 years ago?

I would be interested to hear more about your experiences.

Rosemary

To All -
Have you had a chance to read this this article posted recently on the Transplant Pages Blog?
https://connect.mayoclinic.org/newsfeed-post/what-to-expect-during-a-living-donor-evaluation/

I know that your input would be valuable to others.

@rosemarya I think it gives some good information without being overwhelming. The living donor toolkit link at the bottom of the article gives potential donors a better idea of what is expected of them but the article is a good starting point.
It would be nice to see the differences between directed and altruistic donors in the same article or toolkit. The evaluation and surgery are the same but it seems like there are enough differences to compare them side by side. A timeline would also be nice.
I wish that I had been directed to Mayo Connect after my initial screening call with Mayo. I found it by accident and it would have helped quite a bit to hear from "real" people earlier on.

@mauraacro, I think that you have expressed excellent ideas here!

Now, I have a request for you.
Would you add (you can even copy/paste) your comments to the Comment area of the article? https://connect.mayoclinic.org/newsfeed-post/what-to-expect-during-a-living-donor-evaluation/

I think that @kequick and the Mayo Transplant staff will be interested in hearing your view point. As a living donor, you provide a very unique point of view that is only possible thru the experience you have lived.
I know that the Mayo team is constantly looking for ways to improve patient education and care.

Thank you.
Rosemary