Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

@cleverusername

Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.

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Thanks so much! Surgery Tuesday!

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@cleverusername

Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.

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@triciaodonnell That's great! How are you feeling?

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@cleverusername

Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.

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I’m feeling great! Husband (recipient) very tired and sometimes swollen ankles. We are ready to go!

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@triciaodonnell I'm so excited for both of you, wonderful things are happening

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@triciaodonnell, Welcome to Mayo Clinic Connect. I am happy that you have shared this exciting event.
I send prayers for both you and your husband as the surgeries become a reality. I wish the very best outcome for your husband, and a smooth comfortable recovery for both of you.
Hugs,
Rosemary

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@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

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@beckyjohnson

This is an unbelievable eye opener. Apparently Medicare cuts off funding for antirejection medicine 3 yrs. after the recipient recieves a donor kidney (not sure about other organs). Some problems I'm having wrapping my brain around this fact (at least for some patients) are what happens when they cannot afford the medicine, what becomes of the donated kidney, what emotions are derived from both donor (who believes this is a life changing gift meant to last a lifetime not a mere 36 months) & recipient (who must have an overwhelming feeling of hopelessness to say the least). I'm so heartbroken that I'm relying on pure faith to get an understanding that is acceptable

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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.

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@beckyjohnson

This is an unbelievable eye opener. Apparently Medicare cuts off funding for antirejection medicine 3 yrs. after the recipient recieves a donor kidney (not sure about other organs). Some problems I'm having wrapping my brain around this fact (at least for some patients) are what happens when they cannot afford the medicine, what becomes of the donated kidney, what emotions are derived from both donor (who believes this is a life changing gift meant to last a lifetime not a mere 36 months) & recipient (who must have an overwhelming feeling of hopelessness to say the least). I'm so heartbroken that I'm relying on pure faith to get an understanding that is acceptable

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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?

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@beckyjohnson

The reason I'm a donor is because I truly care about each & everyone of you, your unique testimonies that shaped you & what brought you to this point & beyond today. Together with hundreds of thousands of voices we fight the "good fight" for access to life saving medication regardless of ones financial status. The following links are a result of our collective voice.
ADVOCATE to get immunosuppressive prescriptions for under insured & economically disadvantaged:
http://www.kidneyfund.org/advocacy/; https://www.ncbi.nlm.nih.gov/books/NBK225251/;
https://nkfadvocacy.wordpress.com/immunosuppressive-drug-coverage/
BLOGS
http://www.kidneyfund.org/kidney-today/protect-immunosuppressive-drug-coverage.html
PRESCRIPTION ASSISTANCE
https://www.americantransplantfoundation.org/receive/; https://www.kidney.org/patients/resources_Prescription; https://www.phrma.org/advocacy/access/patient-assistance; https://advocatemymeds.com;

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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.

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@beckyjohnson

This is an unbelievable eye opener. Apparently Medicare cuts off funding for antirejection medicine 3 yrs. after the recipient recieves a donor kidney (not sure about other organs). Some problems I'm having wrapping my brain around this fact (at least for some patients) are what happens when they cannot afford the medicine, what becomes of the donated kidney, what emotions are derived from both donor (who believes this is a life changing gift meant to last a lifetime not a mere 36 months) & recipient (who must have an overwhelming feeling of hopelessness to say the least). I'm so heartbroken that I'm relying on pure faith to get an understanding that is acceptable

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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.

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@mauraacro

@cleverusername Congratulations! Feel free to PM me and I'll give you my phone # & email. I donated in Rochester but have heard they are similar

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@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.

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@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

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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.

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@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.

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@mauraacro

@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.

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@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

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