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.

Interested in more discussions like this? Go to the Transplants Support Group.

@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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@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 you are continuing your recovery. And also your husband. Here is some post transplant information that you might like to have.
https://connect.mayoclinic.org/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/

https://connect.mayoclinic.org/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

Rosemary

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Many of you have met volunteer mentor, Rosemary, @rosemarya. Today she was featured as our Mayo Clinic Connect Member in the Spotlight. Enjoy getting to know more about her here:

A Passion for Transplant Patients: Meet @rosemarya https://connect.mayoclinic.org/newsfeed-post/a-passion-for-transplant-patients-meet-rosemarya-1/

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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 - we took your feedback here and created a new blog post, a timeline or "countdown" of sorts leading up to living donor surgery. In the process of writing this, we learned that it's difficult to create a "true timeline" because each donor/recipient's situation is so different, and timelines are typically driven by the recipient's status. So while we were't able to create a concrete timeline, we hope this information can be helpful to someone out there. Thanks again for the idea! https://connect.mayoclinic.org/newsfeed-post/countdown-to-living-donor-surgery-key-steps/

Also, it's still in our plan to add more information about the difference between directed and altruistic donors. Great feedback!

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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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@kequick That's so helpful!
My recipient and I really want to get the word out about living donation but we haven't figured out a good place to start besides talking to people. This gives great info and the links make it easy for someone to find the things a potential donor would need, all in one place.
The timeline link is something we can share on social media or text or email to people interested to give them more information if they have questions.

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Hello all,

I came back for a little update.

I found this thread a few months ago while looking to speak with other folks going through a donation.

Since then I connected with @mauraacro (and I have read all of @triciaodonnell's posts) and through some lucky chance encounters, I met up with some other donors & recipients in my town. Very lucky re: how some these connections came about, very much by chance - so I'm happy to have had these chances.

I also was able to tell my family about my donation decision, in person. That was pretty interesting. It went well, they're supportive, but it was certainly difficult to explain. Fortunately I took a lot of literature with me, which helped. My workplace is also supportive, and I have a fantastic partner as well that is assisting and also very supportive. I'm very lucky in this respect.

Everything is lining up, which, as only a couple of months have gone by, is pretty exceptional. There's a lot more I could write here, but perhaps I can save that for a future post. In general, I've been very amazed at the responses I've gotten from the people I have told about this - and I'm certainly more aware of how many people out there are in need of a kidney.

So: now it's all just logistics: My last contact with Mayo was re: moving forward with the process, picking a date, etc. My recipient doesn't know yet, and I'm letting the Mayo team handle this, which is OK with me. So for now I'm in kind of a holding pattern, waiting to see what happens and how it all moves forward. It's an interesting time, to say the least.

If anyone out there is in the same situation and wants to connect, let me know. I plan on documenting my experience here much like @triciaodonnell and @mauraacro have done. Reading their experiences has helped me greatly with my own decision making and meditation on this decision, so perhaps I can help do that for someone else.

-cleverusername

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