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.

@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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Becky, did you get your answers from the coordinator? Did you find out how to get your itinerary?

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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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@coquifoife, to see all the posts you have made, simply click on your @username.

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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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It’s early Thursday morning and unfortunately I have not had an easy go of it. I was very nauseous from the anesthesia , and have only had ice chips and little broth, and some ginger ale since surgery on Tuesday. But every hour things get a little better. My husband is doing very well and my kidney is working terrific! His creatinine was cut in half less than 24 hours. I may stay in the hospital one more day instead of going home this afternoon. But everyone at the mayo clinic has been terrific as you would expect.

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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, I hope that today will be a good day of rest for you. And that you will continue to feel better and better throughout the day.

Am I correct that you are a living kidney donor for your husband? It must be a wonderful feeling to see how he is improving already.
My organs are from a deceased donor, and my husband was constantly at my bedside as my caregiver. Are you able to see or be with your husband this hospital stay?

When you feel better, I would enjoy hearing about your experience.
Rosemary

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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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Yes Rosemary, I donated to my husband. He is doing very well! His creatinine level was cut in half on the very first day and the doctors are very happy. He’s a long way down the hall, but we have to walk anyway so we take a couple trips a day to see each other. I am still quite weak and tired, but I’ve had a hard time sleeping. I had a little breakfast this morning and a better nights sleep last night, so I hope today is A much better day. I am very happy for my husband’s great progress and even though it’s not an easy thing to be a living donor, it certainly is rewarding and very worth it.

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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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Thanks so much @rosemarya for soliciting this feedback, and @mauraacro for your great comments. As Rosemary said, your feedback is especially appreciated given that you've been through the living donation process! @keggebraaten and I are already talking about how we can incorporate your ideas to develop some kind of timeline… and I definitely think we can provide more information (either in the toolkit or an upcoming blog post) on the difference between directed and altruistic donors.

I'm glad you found Connect too and am so sorry you didn't hear about it from our staff in the transplant center! We take any chance we can get to promote this site to our colleagues in practice, and provide materials about it for them to give patients. Unfortunately those materials don't make it into the hands of every patient that comes through. However, just this week we developed some additional collateral promoting Connect so we'll have another reason to reach out and remind them to spread the word!

Shared files

MC7421-transplant (MC7421-transplant.pdf)

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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 I hope the nausea passes soon, what an awful feeling. I'm glad they're treating you well.
You have such a positive outlook and you gave another person the gift of life, congratulations, you are wonderful!
Happy to hear your husband is doing well, transplants are an amazing thing,aren't they?

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@colleenyoung For some reason I don't have that option on my phone but I do on my laptop! 🙂 Thank you!

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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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@colleenyoung I understand and completely agree with the benefits of reading and posting on this forum, I'm so glad I found it and will continue to use it to learn and to share.
I have an easier time learning and remembering if someone (physically) tells me something, then follows it up in writing. I like to go back and read over what we talked about to make sure I haven't missed anything or to reread something that I may not have understood the 1st time around.
I've had problems with "tone" on both the reading and writing side that can sometimes only be cleared up through conversation. I've had problems in conversation because of emotion, unfamiliar words or ideas or just crappy cell reception that are easier to clear up in writing.
I don't think most conversations about transplants off forum are secret or that new knowledge being imparted, I think it's a different way to gain perspective, personal contact and/or reassurance with someone who has traveled that road. I spoke with a donor that my social worker thought I'd like to hear from about a week before my surgery. She gave me no advice (except don't wear low rise pants) and no new information but it was comforting to hear someone tell me it would be all right. Everyone told me it would be all right, Mayo, this forum, family & friends, but when I heard it from a lady in N Dakota who donated, it was, oddly enough, more reassuring to me.
In hindsight, some of the things I thought were too small or unimportant to share on a public forum are possibly what potential donors are looking for, I may go back & add them to my timeline. Thank you.

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@beckyjohnson

Has anyone heard of going from an altruistic donor to a directed donor? I've heard of directed donors becoming paired donors which is quite similar to non directed donors.

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@beckyjohnson I was approved to donate directly to my husband but we were still open to a paired donation situation to find a better size match for my husband – that's exactly what they were able to do. My husband received a kidney from someone in Florida and my kidney went to someone in Arizona. It did not matter to me where my kidney went, as long as my husband was able to get one – although it really does make me happy to know that in this process we were able to help another person in need! I am hopeful that the person that received my kidney is feeling as well as my husband is now! His progress has been amazing!

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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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The nausea is gone now – w days post up. I had a small amount of breakfast today, got in a short walk and I am practicing on a little breathing machine. I guess your lungs get lazy when you’ve had surgery. So I have to get those a little stronger. I will go home this afternoon or tomorrow morning. Thanks for the support!

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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 I'm glad to hear you are starting to feel better. My surgery was Monday morning and I was discharged yesterday. I think the worst part for me was the gas pains, especially in the shoulders – but it seems that moving around helps. I didn't sleep the best last night but I know it will get better everyday and will be patient. My husband had his surgery to receive his kidney last Thursday and is doing amazing! It is unbelievable the difference this new kidney has been for him. Even though he is still sore he feels great! As far as you staying another night – I think you should take advantage of it to get yourself stronger & feeling a bit better. No reason to push it if you don't have to 🙂 I wish you the best in the days to come & hope each day is better than the last.

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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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Thanks! Every hour today is better. I think I’ll go home just before dinner.

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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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@mrasmith15. Congratulations, you did it! I've heard those pains can really hurt, I'm glad its over for you. Hopefully after a full day out of the hospital, you'll be able to get a good night's sleep. Its amazing how much better that can make you feel.

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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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Well said, @mauraacro. Thank you for clarifying. I really appreciate how much you’ve shared for others, especially those little things that turn out to be quite significant.

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