1. < Transplants

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.

marvinjsturing | @marvinjsturing | Jan 1, 2019
In reply to @contentandwell "@marvinjsturing You may as well put it out there, it can't hurt and it certainly could..." + (show)
@contentandwell

@marvinjsturing You may as well put it out there, it can't hurt and it certainly could help. I understand completely feeling awkward about asking, I would too, but it is your life. People seem to ask in all different ways, and many are successful.

Congratulations on being cancer free after battling pancreatic cancer. What stage were you at when the cancer was diagnosed? I just had a dear friend diagnosed with it last Wednesday and I am so concerned for him. When I spoke to his wife they didn't know the stage yet.
JK

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@contentandwell I was diagnosed with stage II b. The surgeon removed 46 lymph nodes during the surgery. They found cancer in only 1 of the 46. With pancreatic cancer, far too often it is not diagnosed until it has spread through the body. Please keep me informed of your friend's progress. I have a long story that I should tell sometime about how pancreatic cancer has touched my life and the lives of many people around me and about the amazing love of God who has carried me through my trials.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 2, 2019
In reply to @contentandwell "@marvinjsturing If possible I would send out some feelers now. From what I understand the wait..." + (show)
@contentandwell

@marvinjsturing If possible I would send out some feelers now. From what I understand the wait for kidneys is longer than the wait for livers, so if you can find a donor you can get one much more quickly than if you have to wait for a deceased donor. I presume since you are not yet on an active list you are also not on dialysis. I would imagine that can be very difficult but you can do it a home apparently.
JK

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@contentandwell Just a gentle point of education, dialysis done at home is still dialysis. You can do home hemodialysis, or peritoneal dialysis which is done nightly with a cycler or by manual exchanges.
Ginger

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 2, 2019
In reply to @marvinjsturing "@contentandwell I am not on dialysis at this time, however, the reason I am on the..." + (show)
@marvinjsturing

@contentandwell I am not on dialysis at this time, however, the reason I am on the inactive list is because when you have had pancreatic cancer, you have to be cancer free for 5 years before you can have a transplant. At one time, someone told me that the "cancer free date" was based on when I had my last chemo. That would have made my anniversary date December of 2019. Last month, when I went to Rochester for my semi-annual checkup, Oncology told me that the "cancer free date" is based on when I had my surgery. My surgery was done in June of 2014 so June of this year will be my 5 year anniversary. A couple of weeks ago, I wrote 2 letters about looking for a kidney donor. It was always hard for me to ask for help when I was healthy. In the last few years, I have learned to ask for help and accept help when it is offered. But it stills feels very strange asking people for a kidney. Maybe it is time to get those letters out again and review them one more time. I wasn't sure if Facebook was an appropriate way to get the message out, but I see in one of your previous posts that others are using it to inform people of their need. (When I went in for my evaluation, I was told that the wait for a deceased donor was 2 to 7 years.)

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@marvinjsturing Congratuations on being cancer free! Definitely, go ahead and start putting feelers out. Do you know your GFR at this point? Going for a living donor is less stressful on your system. It takes time to get through the testing process as a donor. Here are some thoughts for getting the word out. Do you belong to a faith community, if so let people there know. Make a t-shirt with your needs on front and back, then wear it and have your friends/family do the same. Make a bumper sticker for your vehicle, and put it on! You never know who will see it! Is there a columnist from your local paper you can contact to tell your story? Sometimes you have to be creative. While you may feel reluctant to be so exposed, it sounds like you know there is something even bigger in store for you.
Ginger

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mauraacro | @mauraacro | Jan 2, 2019
In reply to @marvinjsturing "@contentandwell I am not on dialysis at this time, however, the reason I am on the..." + (show)
@marvinjsturing

@contentandwell I am not on dialysis at this time, however, the reason I am on the inactive list is because when you have had pancreatic cancer, you have to be cancer free for 5 years before you can have a transplant. At one time, someone told me that the "cancer free date" was based on when I had my last chemo. That would have made my anniversary date December of 2019. Last month, when I went to Rochester for my semi-annual checkup, Oncology told me that the "cancer free date" is based on when I had my surgery. My surgery was done in June of 2014 so June of this year will be my 5 year anniversary. A couple of weeks ago, I wrote 2 letters about looking for a kidney donor. It was always hard for me to ask for help when I was healthy. In the last few years, I have learned to ask for help and accept help when it is offered. But it stills feels very strange asking people for a kidney. Maybe it is time to get those letters out again and review them one more time. I wasn't sure if Facebook was an appropriate way to get the message out, but I see in one of your previous posts that others are using it to inform people of their need. (When I went in for my evaluation, I was told that the wait for a deceased donor was 2 to 7 years.)

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@marvinjsturing I found the person I donated to on Twitter. I'm not proficient at it, don't have a lot of followers and wasn't even following the person who posted seeking a kidney for her Mom. We don't live near each other, I thought I may have been too old & fat to donate, I don't have much money in savings and I'm self employed so I don't get paid if I don't work. We aren't the same race so I didn't know if that made a difference in matching for donation. It was a perfect set up for me to just retweet so the "real" donor may see it and be on my way.
Here is what helped make it easier for me- She said in her post what blood type they were looking for. She provided a link to the Mayo breeze site so I could just click on it to find out more information and to do the initial evaluation. She said that insurance would cover all of my medical bills & some of the travel costs and that there are organizations to help cover my missing wages.She said that her whole family would do every thing they could to make sure I was comfortable throughout the whole process.
It gave me just enough information to feel safe in inquiring without feeling over loaded with information. We DM'ed a bit after I filled out the questionnaire & I learned more about her Mom and why she needed a kidney. The nurse/social worker from Mayo called and told me what my part would be and it went from there.
Social media was easy for both sides of donation because it was far reaching and nobody was put on the spot. There was immediate information available and I didn't have to worry about not having the best social skills. Family, friends, coworkers, acquaintances and strangers all passed the information along and somehow it got to me at that exact right time where I thought, I can do that.
Good luck in your journey and remember there that are so many of us that can help. Even if we are only passing information on to one other person, that may end up to be the donor.

REPLY
2 replies
jodeej | @jodeej | Jan 2, 2019
In reply to @mauraacro "@marvinjsturing I found the person I donated to on Twitter. I'm not proficient at it, don't..." + (show)
@mauraacro

@marvinjsturing I found the person I donated to on Twitter. I'm not proficient at it, don't have a lot of followers and wasn't even following the person who posted seeking a kidney for her Mom. We don't live near each other, I thought I may have been too old & fat to donate, I don't have much money in savings and I'm self employed so I don't get paid if I don't work. We aren't the same race so I didn't know if that made a difference in matching for donation. It was a perfect set up for me to just retweet so the "real" donor may see it and be on my way.
Here is what helped make it easier for me- She said in her post what blood type they were looking for. She provided a link to the Mayo breeze site so I could just click on it to find out more information and to do the initial evaluation. She said that insurance would cover all of my medical bills & some of the travel costs and that there are organizations to help cover my missing wages.She said that her whole family would do every thing they could to make sure I was comfortable throughout the whole process.
It gave me just enough information to feel safe in inquiring without feeling over loaded with information. We DM'ed a bit after I filled out the questionnaire & I learned more about her Mom and why she needed a kidney. The nurse/social worker from Mayo called and told me what my part would be and it went from there.
Social media was easy for both sides of donation because it was far reaching and nobody was put on the spot. There was immediate information available and I didn't have to worry about not having the best social skills. Family, friends, coworkers, acquaintances and strangers all passed the information along and somehow it got to me at that exact right time where I thought, I can do that.
Good luck in your journey and remember there that are so many of us that can help. Even if we are only passing information on to one other person, that may end up to be the donor.

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@mauraacro what an amazing story. I believe that God puts us where we need to be when we need to be there.
Blessings,
JoDee

REPLY
1 reply
mauraacro | @mauraacro | Jan 2, 2019
In reply to @jodeej "@mauraacro what an amazing story. I believe that God puts us where we need to be..." + (show)
@jodeej

@mauraacro what an amazing story. I believe that God puts us where we need to be when we need to be there.
Blessings,
JoDee

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@jodeej. Its definitely something bigger than me. I made it 52 years only vaguely thinking about organ donation besides checking the box on my driver's license form.

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JK | @contentandwell | Jan 2, 2019
In reply to @stella25 "While looking into the age limit for living liver donors a few months ago I discovered..." + (show)
@stella25

While looking into the age limit for living liver donors a few months ago I discovered the age limit for living kidney donors at most transplant centers was 65. I just recently revisited the topic and found they have raised the age limit to 69 for living kidney donors. Could be due to advanced technology which may be reducing risk factors involved. My son recently had a cholecystectomy where they used the robot. Went through his belly button. Six weeks later can't even tell he had surgery.

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@stella25 That's good that they have raised the age limit. It really should depend on the individual's health more than anything. My husband is 83 and in better shape than most men in their 60s.
Robotic surgery is amazing. I remember when my mother had her gallbladder out, not only did she have a visible scar, but for the first few days after surgery she looked about 10 years older than she normally did.
JK

REPLY
JK | @contentandwell | Jan 2, 2019
In reply to @marvinjsturing "@contentandwell I was diagnosed with stage II b. The surgeon removed 46 lymph nodes during the..." + (show)
@marvinjsturing

@contentandwell I was diagnosed with stage II b. The surgeon removed 46 lymph nodes during the surgery. They found cancer in only 1 of the 46. With pancreatic cancer, far too often it is not diagnosed until it has spread through the body. Please keep me informed of your friend's progress. I have a long story that I should tell sometime about how pancreatic cancer has touched my life and the lives of many people around me and about the amazing love of God who has carried me through my trials.

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@marvinjsturing I am so happy for you that you survived this really awful cancer. Your story makes me feel better, I hope my friend is able to battle this successfully too.
God works in mysterious ways, and I too credit my being here still with it being a gift from Him. I had scores of people praying for me, including being put on an international nun prayer chain. I do get tears in my eyes though when I think of the poor young woman who lost her life and was an organ donor.
JK

REPLY
JK | @contentandwell | Jan 2, 2019
In reply to @gingerw "@contentandwell Just a gentle point of education, dialysis done at home is still dialysis. You can..." + (show)
@gingerw

@contentandwell Just a gentle point of education, dialysis done at home is still dialysis. You can do home hemodialysis, or peritoneal dialysis which is done nightly with a cycler or by manual exchanges.
Ginger

Jump to this post

@gingerw I do realize it is still dialysis, and from what I understand the dialysis sessions last longer than they do if you go to a hospital for the dialysis. Some people find that more convenient though. I think the problem with that sometimes is that it is easier to skip or to not do it for the required amount of time. One of my friends had a friend who was doing the home dialysis and she didn't do it as much as she was supposed to do it. She was very negligent in her self-care and unfortunately passed away.
JK

REPLY
1 reply
JK | @contentandwell | Jan 2, 2019
In reply to @mauraacro "@marvinjsturing I found the person I donated to on Twitter. I'm not proficient at it, don't..." + (show)
@mauraacro

@marvinjsturing I found the person I donated to on Twitter. I'm not proficient at it, don't have a lot of followers and wasn't even following the person who posted seeking a kidney for her Mom. We don't live near each other, I thought I may have been too old & fat to donate, I don't have much money in savings and I'm self employed so I don't get paid if I don't work. We aren't the same race so I didn't know if that made a difference in matching for donation. It was a perfect set up for me to just retweet so the "real" donor may see it and be on my way.
Here is what helped make it easier for me- She said in her post what blood type they were looking for. She provided a link to the Mayo breeze site so I could just click on it to find out more information and to do the initial evaluation. She said that insurance would cover all of my medical bills & some of the travel costs and that there are organizations to help cover my missing wages.She said that her whole family would do every thing they could to make sure I was comfortable throughout the whole process.
It gave me just enough information to feel safe in inquiring without feeling over loaded with information. We DM'ed a bit after I filled out the questionnaire & I learned more about her Mom and why she needed a kidney. The nurse/social worker from Mayo called and told me what my part would be and it went from there.
Social media was easy for both sides of donation because it was far reaching and nobody was put on the spot. There was immediate information available and I didn't have to worry about not having the best social skills. Family, friends, coworkers, acquaintances and strangers all passed the information along and somehow it got to me at that exact right time where I thought, I can do that.
Good luck in your journey and remember there that are so many of us that can help. Even if we are only passing information on to one other person, that may end up to be the donor.

Jump to this post

@mauraacro Your story is very inspiring for anyone considering being a donor and for people looking for a donor. I am constantly impressed by people like yourself who donate an organ to a stranger.
JK

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