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.

@terease

Additionally, shops such as Marshall's and Kohl's,along with Wal-Mart, are a short drive out Broadway. Downtown shops (although there aren't a lot) are practically at Mayo's door.

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Hi, @terease. Welcome to Connect. I recognize those shops in Rochester! They do make it convenient for patients and caregivers. When I was at Mayo waiting for my transplant, my husband had to buy my clothes (everything) to wear for discharged from the hospital because after being flown from another hospital, all I had to wear was the hospital gown!

Would you be comfortable to share what brings you to this discussion? Are you a donor? A recipient? A caregiver?

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@beckyjohnson

Rose Colred Lense
I am blessed with 3 working kidneys each with their own working euretha's so the least I can do is give one of them to some grateful person whose quality of life will be greatly improved for them & their loved ones. Hopefully this in turn will "Pay it Forward" to a long chain of successful transplants.

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Three kidneys?! I didn't even know that was possible.. wow! That's so cool..

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Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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Hi @jgiovann, welcome to Connect.
You'll notice that I moved your message about looking for experiences from kidney donors to this existing discussion. Click VIEW & REPLY to read through this very information thread.

Congratulations on getting through the grueling testing and evaluation process and being clear to be a donor. I will be very interested to hear about your experience with the Paired Donor Exchange System. With you surgery coming up in a few weeks, I'm sure you have many questions. Ask away. What are you most nervous about?

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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@jgiovann, Welcome to Mayo Connect. Congratulations on being cleared as a living kidney donor. You are already a hero for your willingness to be onsidered for living donation. I assure you that organ donors is a gift of life. My kidney transplant is from a deceased donor 10 years ago.
I have no experience with living donation, however if you go to the beginning of this discussion (oldest to newest) and start with reading the posts thru May 30, you will be able to read what the real experts have experienced. You will meet @mauraacro and @onecentwalsh who have generously shared their own experiences with the process of kidney donation. Another member that I want you to meet is @cmael, who received a kidney from her daughter.

Here is a discussion for you and your mom as you prepare and plan to pack for your surgery date. – Members with either living or deceased donors are alike in what they do to plan – Waiting for the Call: What needs to get done at home before you go
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
Let me know, anytime, how I can help you.

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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Congratulations! Donation is amazing enough but paired donation takes it to a whole new level.
Those tests are really something, aren't they? I almost think they were harder for me than donation.
I practically used this site as a journal, I was very wordy but received great info & hope I helped someone with their journey.
The short version of surgery day is, it went well (for both of us!). I woke up & said I was hungry which made the nurse laugh. I was taking short walks a few hours later & walked a lot more that night. It was surprisingly not painful but felt tight or like I did too many crunches. It was difficult to get out of bed so make sure they teach you how. I highly recommend high waisted or maternity leggings, they were very comfortable.
I left the hospital the day after surgery but stayed in town for almost 2 weeks, mostly because I didn't want to sit through a 5 hour flight, also because I knew I would take it easier away from home.
I was back to work at a somewhat physically active job within a month, with a 10# lifting restriction for 6 weeks.
Ask me anything! If I don't know it, someone here does or we can find the answer.
I wish you & your mom the very best!

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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Posted to you privately and here in case others need to read this!

So exciting that you’ll be donating in less than a month! What a beautiful gift you will be giving to someone and in turn to your mom. Way to be brave and generous.

I was very active and healthy (still am) going into surgery day. My husband and I rented an Airbnb the night before and days following surgery because we live about 2 hours away. My surgery was very early so I was admitted the night before. I said my goodbyes to my family as they wouldn’t see me before surgery, slept in my own pjs, took a shower with the cleanser that was for pre surgery. I signed some paperwork and hardly slept because I was anxious, excited, and nervous!

They woke me pretty early to get ready. I gowned up and they wheeled me to surgery. All the while, the team was caring for me….they were my team and I felt so comfortable with each of them. Every single person was so thankful and grateful for what I was doing. The surgeon had met with me the day before when I had my last bit of testing and discussed all that would happen.

The anesthesiologist was who greeted me in the surgery room. He explained exactly what was going to happen and what I needed to do and how to move to make that an easy process. I’ve had three c-sections before, so I knew how I had reacted in the past to meds…. I was out pretty quick and woke up in the recovery room (can’t remember how many hours later, maybe three). I was pretty shaky, so they gave me something to combat that. I fell asleep again and then woke up and was wheeled back to my room.

My husband, and kids were there waiting when I came back. From there I had great constant care in the transplant wing. Pain was managed well, I got walking as soon as they let me, used the catheter only as long as I had to-I wanted to get that thing out! They continuously checked my different blood work to make sure my kidney was doing what it was supposed to be doing.

I had a good nights sleep, showered, ate, breathed into the tube many times to make sure my lungs were good. I saw the surgeon and all those who were part of the donation team that morning and afternoon. I was released to go home that afternoon because I was doing so well.

The two hour drive was a little hard with bumps, I used a small pillow to hold against my incision. I am a teacher and had my surgery when I was done that spring 2018. So I didn’t need to rush back to work.

I rested a lot. A lot of naps because I got tired easy. I ate well, drank a lot of water, and walked every day. I’m a runner so it was hard not being at my activity levels those first few weeks. But really listen to what your body is telling you so that you don’t get a hernia or an infection in one of your incision sites.

I have two very small scars from the laparoscopic area and then one larger from the belly button down about four inches. They healed nicely and most days I forget about this until someone like you asks! I was an anonymous donor who started a chain of 7. My recipient is in FL and is doing well! I’m so thankful to have been a part of this journey that is blessing so many others.

Six weeks later, I was back to normal life, running and working out m. Lifting things. And sometime forgetting what I had done.

Your mom is blessed and many others will be because of the paired donation process! Please ask any other questions if I haven’t answered what you needed. Let people care for you, you deserve it. And let people care for your mom-she’ll need them as well!

Blessings and prayers as you count down the days. Stay healthy and we’ll
Penny

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@colleenyoung

Hi @jgiovann, welcome to Connect.
You'll notice that I moved your message about looking for experiences from kidney donors to this existing discussion. Click VIEW & REPLY to read through this very information thread.

Congratulations on getting through the grueling testing and evaluation process and being clear to be a donor. I will be very interested to hear about your experience with the Paired Donor Exchange System. With you surgery coming up in a few weeks, I'm sure you have many questions. Ask away. What are you most nervous about?

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Thank you! I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery with general anesthesia before. I am also worried about post-op pain control…

REPLY
@mauraacro

Congratulations! Donation is amazing enough but paired donation takes it to a whole new level.
Those tests are really something, aren't they? I almost think they were harder for me than donation.
I practically used this site as a journal, I was very wordy but received great info & hope I helped someone with their journey.
The short version of surgery day is, it went well (for both of us!). I woke up & said I was hungry which made the nurse laugh. I was taking short walks a few hours later & walked a lot more that night. It was surprisingly not painful but felt tight or like I did too many crunches. It was difficult to get out of bed so make sure they teach you how. I highly recommend high waisted or maternity leggings, they were very comfortable.
I left the hospital the day after surgery but stayed in town for almost 2 weeks, mostly because I didn't want to sit through a 5 hour flight, also because I knew I would take it easier away from home.
I was back to work at a somewhat physically active job within a month, with a 10# lifting restriction for 6 weeks.
Ask me anything! If I don't know it, someone here does or we can find the answer.
I wish you & your mom the very best!

Jump to this post

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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@onecentwalsh

Posted to you privately and here in case others need to read this!

So exciting that you’ll be donating in less than a month! What a beautiful gift you will be giving to someone and in turn to your mom. Way to be brave and generous.

I was very active and healthy (still am) going into surgery day. My husband and I rented an Airbnb the night before and days following surgery because we live about 2 hours away. My surgery was very early so I was admitted the night before. I said my goodbyes to my family as they wouldn’t see me before surgery, slept in my own pjs, took a shower with the cleanser that was for pre surgery. I signed some paperwork and hardly slept because I was anxious, excited, and nervous!

They woke me pretty early to get ready. I gowned up and they wheeled me to surgery. All the while, the team was caring for me….they were my team and I felt so comfortable with each of them. Every single person was so thankful and grateful for what I was doing. The surgeon had met with me the day before when I had my last bit of testing and discussed all that would happen.

The anesthesiologist was who greeted me in the surgery room. He explained exactly what was going to happen and what I needed to do and how to move to make that an easy process. I’ve had three c-sections before, so I knew how I had reacted in the past to meds…. I was out pretty quick and woke up in the recovery room (can’t remember how many hours later, maybe three). I was pretty shaky, so they gave me something to combat that. I fell asleep again and then woke up and was wheeled back to my room.

My husband, and kids were there waiting when I came back. From there I had great constant care in the transplant wing. Pain was managed well, I got walking as soon as they let me, used the catheter only as long as I had to-I wanted to get that thing out! They continuously checked my different blood work to make sure my kidney was doing what it was supposed to be doing.

I had a good nights sleep, showered, ate, breathed into the tube many times to make sure my lungs were good. I saw the surgeon and all those who were part of the donation team that morning and afternoon. I was released to go home that afternoon because I was doing so well.

The two hour drive was a little hard with bumps, I used a small pillow to hold against my incision. I am a teacher and had my surgery when I was done that spring 2018. So I didn’t need to rush back to work.

I rested a lot. A lot of naps because I got tired easy. I ate well, drank a lot of water, and walked every day. I’m a runner so it was hard not being at my activity levels those first few weeks. But really listen to what your body is telling you so that you don’t get a hernia or an infection in one of your incision sites.

I have two very small scars from the laparoscopic area and then one larger from the belly button down about four inches. They healed nicely and most days I forget about this until someone like you asks! I was an anonymous donor who started a chain of 7. My recipient is in FL and is doing well! I’m so thankful to have been a part of this journey that is blessing so many others.

Six weeks later, I was back to normal life, running and working out m. Lifting things. And sometime forgetting what I had done.

Your mom is blessed and many others will be because of the paired donation process! Please ask any other questions if I haven’t answered what you needed. Let people care for you, you deserve it. And let people care for your mom-she’ll need them as well!

Blessings and prayers as you count down the days. Stay healthy and we’ll
Penny

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Thank you <3

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@jgiovann

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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@jgiovann It's natural to be nervous but from what I have seen and heard, complications are few and far between. Pain control is fairly well managed considering that opioids are so conservatively administered these days. There have been studies that have found ibuprofen to be just about as effective as opioids too, so if you can take them you will be fine.
Also, I think hospitals often suggest a longer stay time than typical, just in case it is needed.
Regarding the possibility of your mother rejecting the new kidney, if it did happen please remember that you at least tried by being part of a paired donor exchange. I admire you for being there for your mother, and I am sure she must appreciate it tremendously. My daughter wanted to do that for me but things did not work out.
I think if a person has a rejection that the person goes to the top of the list for a new organ, but I may not be right with that. You could ask about that at the transplant center.
JK

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@jgiovann

Thank you! I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery with general anesthesia before. I am also worried about post-op pain control…

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@jgiovann Thank you for going through the rigorous testing to be a living donor! It is quite the battery of exams both physically and emotionally, isn't it? That's because the transplant team wants the best fit possible for your mother, and the best health for you. Yes, any surgery is a scary thing, and we appreciate you being honest in that. As you have read, the team will be right there with you, and so will we! You mentioned rejection of the new-to-your-mother kidney. Rejection is a remote possibility anytime, and it is nothing that anyone can foresee. Remember all those tests you went through – it's to make sure everything is optimum for the transplant to successful. Keep your great attitude. Feel free to express your worries or concerns here, and your joy after the surgery! There are several members here who have been where you are. If, heaven forbid, you have kidney issues in the future, you are placed in priority on the transplant list, since you were a donor. This happened to my friend 20 years after he donated a kidney to his sister. For today, blessings on you, your mother, your support teams, and the transplant team.
Ginger

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@jgiovann

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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Complications can happen and I completely understand being nervous about.
I had complete faith in the medical side of things. All of the tests you had were to determine not only how well you would live the rest of your life with 1 kidney but how you would do in and after surgery. The very cynical side of me says that not only is this a very expensive surgery but the surgeon and the hospital have a reputation to uphold and would not do it if they didn't think the outcome would be positive for you and your mom.
I am great at avoiding thinking about scary things and worried instead about having time to clean out my furnace filter and fridge before I left. I did want to know the real deal about surgery, before and after so I talked with people on here and also found a "donor buddy" because I had a hard time finding (non medical) info from the donor perspective.
http://livingdonorsonline.org/living-donor-buddies/living-kidney-donor-buddies/
I don't know if you read the very beginning of my "journey" but I was 50, not a marathon runner or even a regular at the gym and could only find stories about those guys donating and I wanted to talk to someone more like me. My donor buddy was a lot more like me than someone doing decathlons.
I had laparoscopic surgery so only have the one incision. I don't know if what goes into the surgeon's decision to do it that way but it seems like a good question. Do you have a social worker from the hospital? Mine worked as a go between for all of the different departments and could either answer questions or direct me to the answer.
As for pain, I had an injection into my abdomen before they stitched me up which lasted 24 hours and of course had pain meds in my IV and to take orally while I was in the hospital. I left with a prescription for 10 days of pain meds and extra strength Tylenol. I think I took the pain meds on schedule for a couple of days and then only at night after that, I took the tylenol mid day or as needed for about a week. I was not being strong or tough, it didn't actually hurt enough for more than Tylenol.
As @contentandwell said, hospitals err on the side of caution and pick the longest times they'd expect you to stay. I was told 2 nights but passed all of my checkpoints so left early. They encouraged me to stay 1 more night if I would be more comfortable.
Keep asking questions and talking about it! As you probably noticed, there isn't much out there from the donor side and the more donors and potential donors searching and finding information, the better!

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@jgiovann

Thank you very much. I am most nervous about there being complications for me or my mother or my Mom's body rejecting the new kidney. I am also very worried being intubated, I have never had surgery or been hospitalized before. I am also worried about post-op pain control…People on here saying they went home the day after surgery is amazing! I am having surgery at Strong Memorial Hospital in Rochester, NY and they anticipate my being in the hospital 4-7 days and more incs incisions then people on here have said.. makes me nervous 🙁

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Part one of my reply was so long I thought I would do this separately.
Most of the people here are recipients and would be better able to answer question about how your mom will fare. I met the woman I donated to the day before surgery so I can't give you too much back story. She was 60, had been on dialysis for almost 5 years and had acquired diabetes and gout along the way. She couldn't walk more than a block without resting and was only urinating once a day.
The kidney started working immediately and her gout disappeared quickly. She is able to manage her diabetes through diet now. She was walking around the day after surgery and left the hospital after 4 nights. She was able to walk the 5 blocks to our hotel. She had to stick around for about a month (she lives 5 hours from the hospital) for appointments.
She had some minor signs of rejection in the 1st year but has been able to drastically reduce hers meds since then and is not showing any signs of rejection. I think she still goes in for labs about once a month and to the doctor every 6 months.
We talk every week and don't go into much medical detail but she is doing well and decided to go back to work because she was getting bored! Since her surgery, we have gone to Mexico for her oldest daughter's wedding, she was at the hospital for the birth of her daughter in law and son's baby.and is helping plan her youngest daughter's wedding. She is very active and I love hearing about her adventures.
Organ donation is truly a miraculous thing and I'm so glad when someone can be a part of it.

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@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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@rebekahinvt, I want to introduce you to @jgiovann who is scheduled for surgery to donate a kidney to a donor chain. I invite you to add your experience here. Perhaps you can relate to the nervous state that @jgiovann, is currently experiencing.

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