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jolinda
@jolinda

Posts: 55
Joined: Jul 05, 2018

PKD kidneys removed at time of transplant

Posted by @jolinda, Tue, Jul 24 2:21pm

PKD (Polycystic Kidney Disease) caused my kidneys to grow to be huge! Not only was I in stage 5 of kidney failure when I arrived at Mayo Clinic, which is bad enough but I also was miserable because my native kidneys grew so large I had trouble eating, sleeping, moving and breathing. My scans showed them pushing up in my lungs and pushing down into my hip bones. NOT FUN!!! I was very blessed to have a healthy living donor but I was worried that even after a new kidney I'd still have a poor quality of life because my giant old, non-functioning kidneys would still be there causing so many problems. I was doubly blessed to meet Mikel Prieto when I was at Mayo clinic in Rochester, MN who is a brilliant surgeon and was already researching the possibility of doing both surgeries at once (1.bad giant kidneys out AND 2.new healthy kidney transplanted). I am so proud to say I was the first patient who received a laparoscopic (tiny, tiny incisions) bilateral native nephrectomy (both bad PKD kidneys removed) with a simultaneous living donor transplant (awesome new kidney transplant from my healthy friend Dawn) all at one time. After surgery I was 22lbs lighter!!! Can you imagine, that's like 10lb twins… YUCK!!! This is a complex surgery and it is not right for everyone but it improved my quality of life beyond measure. I wanted to share my story so others are aware that this type of hope exists but also I want to find out if anyone else has a similar story.

REPLY

@jolinda, On the most basic level of understanding, I cannot even begin to imagine the physical relief you felt after your surgery – 22 lbs! However the most fantastic part is the new life that you received because of the kidney donation from your friend, and your willingness to be the first patient to undergo this process.
Thank you for sharing your story on Connect. I am confident that patients are already experiencing the benefit of this procedure.

Jolinda, is this surgery to remove the enlarged kidneys (PKD) only for patients with living donors? or can someone with a deceased donor also be a potential candidate?

So far I have only met individuals who have had living donors. I am pretty sure if the timing all worked out they could accept an organ donation from a deceased donor as well. This is something the care team would certainly need to be involved in deciding in the moment. It is only because of the generous gifts from donors (both living and deceased) that this opportunity is available.

I am hoping to have the same surgery. (Bilateral double nephrectomy, laproscopically, with simultaneous live donor kidney transplant) We live in Washington but the transplant center here wants to cut me from sternum to pubic bone, take diseased kidneys out, have me heal and do dialysis for 3 months and then have my live donor kidney transplant. We are in the process of making Mayo Clinic in Arizona our primary transplant place. We have 3 daughters so being away for 6 weeks will be difficult but we believe this way of doing surgery will be way less traumatic for my body. I’m excited to get this done! I can’t wait to start feeling better

Hello, @kayb. Welcome to Mayo Clinic Connect. That's great to hear you are in the process of making Mayo Clinic's campus in AZ your primary transplant place. Nice that the surgical procedure will be way less traumatic for your body.

In addition to @jolinda, I thought you might like to meet @cehunt57 and @mlmcg who have talked about live donor kidney transplant. Hoping they can share some of their experiences in themselves or loved ones with you and help support you in this process. I'd also like to introduce you to @rosemarya.

While waiting for others to join in, thought you might be interested in this Mayo Clinic information on living-donor transplantation, https://www.mayoclinic.org/departments-centers/transplant-center/living-donor-transplantation/gnc-20203911.

How are you feeling currently?

@lisalucier

Hello, @kayb. Welcome to Mayo Clinic Connect. That's great to hear you are in the process of making Mayo Clinic's campus in AZ your primary transplant place. Nice that the surgical procedure will be way less traumatic for your body.

In addition to @jolinda, I thought you might like to meet @cehunt57 and @mlmcg who have talked about live donor kidney transplant. Hoping they can share some of their experiences in themselves or loved ones with you and help support you in this process. I'd also like to introduce you to @rosemarya.

While waiting for others to join in, thought you might be interested in this Mayo Clinic information on living-donor transplantation, https://www.mayoclinic.org/departments-centers/transplant-center/living-donor-transplantation/gnc-20203911.

How are you feeling currently?

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I am sorry that I did not have a live donor. However, my brother did, but we lived in two different states and had little contact so I can only give the information of my experience about my transplant. I have been the caregiver for my kidney over 10 years now. Being a good caregiver after you receive a kidney, liver, heart or a lung is the best thing you can do for your new friend. You may have to change some of the things you did before the transplant, to keep your new body happy. Read all the information you can, ask lots of questions, keep all doctor appointments and lab appointments, forever. If this is your first surgery it can be scary, but do not be afraid you will be well taken care of. Once you can have solid food you will know you have made it. Good luck.

mlmcg

@kayb

I am hoping to have the same surgery. (Bilateral double nephrectomy, laproscopically, with simultaneous live donor kidney transplant) We live in Washington but the transplant center here wants to cut me from sternum to pubic bone, take diseased kidneys out, have me heal and do dialysis for 3 months and then have my live donor kidney transplant. We are in the process of making Mayo Clinic in Arizona our primary transplant place. We have 3 daughters so being away for 6 weeks will be difficult but we believe this way of doing surgery will be way less traumatic for my body. I’m excited to get this done! I can’t wait to start feeling better

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Kay,
This 2 min video tells my kidney story:

I can't even find the 3 small incisions where the laparoscopic instruments were inserted, my giant kidneys (over 20lbs) came out in sections through the same incision used for the donor kidney which is slightly larger than a C-section scar. I left the hospital on day 4 and my donor was only in 2 days total. I feel great after my one and done surgery. I can eat, I can breathe, I can move, I can sleep, heck, I can even put my shoes on without sitting down. 🙂 I am a mom too and it was important for me to get myself, my kiddos and my hubby back on track as soon as I could. Please let me know if I can help ease your mind in anyway, you are not alone. If you have questions that you'd like to ask privately you can Private Message me whenever you'd like.
Jolinda

@kayb, @jolinda, @lisalucier and @rosemarya it has been a month since @lisalucier referred me in regard to living donors. I’m sorry it took me so long to respond. I’m cleaning up my emails and posts in preparation for the system change 10/1/18. I don’t know much about PKD. My stage IV CKD is from diabetes. I’ve been looking for a living kidney donor for about 2 years now. I am on the UNOS waiting list. I just got home from my annual Mayo vacation for pretransplant review. I’ve had some improvement in kidney function and am now too healthy for kidney transplant at this time. My list status has been changed to inactive. This is a good problem to have because I still haven’t found a living donor! I’m a person of faith and am trying to be patient for this journey to unfold in the right way and time that is in keeping with God’s plan for me.

@cehunt57

@kayb, @jolinda, @lisalucier and @rosemarya it has been a month since @lisalucier referred me in regard to living donors. I’m sorry it took me so long to respond. I’m cleaning up my emails and posts in preparation for the system change 10/1/18. I don’t know much about PKD. My stage IV CKD is from diabetes. I’ve been looking for a living kidney donor for about 2 years now. I am on the UNOS waiting list. I just got home from my annual Mayo vacation for pretransplant review. I’ve had some improvement in kidney function and am now too healthy for kidney transplant at this time. My list status has been changed to inactive. This is a good problem to have because I still haven’t found a living donor! I’m a person of faith and am trying to be patient for this journey to unfold in the right way and time that is in keeping with God’s plan for me.

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@cehunt57
I have missed your presence here, and I am happy to hear good news that your kidneys are benefiting from your dedication to taking care of them. This sounds like a winning situation for you – more time for God's plan to unfold around you and more time for your donor to step forward.
"There is an appointed time for everything, and a time for everything under the heavens," Eccl 3:1

@cehunt57

@kayb, @jolinda, @lisalucier and @rosemarya it has been a month since @lisalucier referred me in regard to living donors. I’m sorry it took me so long to respond. I’m cleaning up my emails and posts in preparation for the system change 10/1/18. I don’t know much about PKD. My stage IV CKD is from diabetes. I’ve been looking for a living kidney donor for about 2 years now. I am on the UNOS waiting list. I just got home from my annual Mayo vacation for pretransplant review. I’ve had some improvement in kidney function and am now too healthy for kidney transplant at this time. My list status has been changed to inactive. This is a good problem to have because I still haven’t found a living donor! I’m a person of faith and am trying to be patient for this journey to unfold in the right way and time that is in keeping with God’s plan for me.

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@cehunt57 Good for you that you are taking such great care of yourself. Having more time will certainly help you as you continue your search for a living donor. I can completely relate to how difficult it is being patient as you wait, I struggled with that. I would suggest praying for your donor, he or she is out there somewhere praying to find you! Best of luck and thanks for the update.

I have a question. Why do so many people feel that they have to have a "live" kidney donor? I did not have a live donor and have had my kidney for over 10 years now. Every time I have my annual transplant check up, I'm told "Keep doing what you are doing. See you next year". I also that a check up every 3 months with my PCP, blood work every 6 weeks and I'm told "Keep doing what you are doing. See you in 3 months". I have changed my lifestyle to the one that takes care of my kidney. I have had other health issues that makes keeping a happy kidney a little more difficult. But I am doing it, I am happy, my body is happy, and we are keeping the kidney happy.

If you do not change your lifestyle after the transplant, whether you have a live donor or not, you may have a happy kidney trying to live in an unhappy new home. I still have the question. Why do so many people feel that they have to have a "live" kidney donor?

mlmcg

Liked by gingerw

The simple answer is that living donor's are shown to last much longer respectively.

@rosemarya

@cehunt57
I have missed your presence here, and I am happy to hear good news that your kidneys are benefiting from your dedication to taking care of them. This sounds like a winning situation for you – more time for God's plan to unfold around you and more time for your donor to step forward.
"There is an appointed time for everything, and a time for everything under the heavens," Eccl 3:1

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@rosemarya, thank you for the encouragement and the reminder of such a great verse! Cheryl

@jolinda

@cehunt57 Good for you that you are taking such great care of yourself. Having more time will certainly help you as you continue your search for a living donor. I can completely relate to how difficult it is being patient as you wait, I struggled with that. I would suggest praying for your donor, he or she is out there somewhere praying to find you! Best of luck and thanks for the update.

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@jolinda, thanks for the encouragement and the reminder to pray for the donor. I don’t believe in luck; it is in God’s hands. Cheryl

@mlmcg

I have a question. Why do so many people feel that they have to have a "live" kidney donor? I did not have a live donor and have had my kidney for over 10 years now. Every time I have my annual transplant check up, I'm told "Keep doing what you are doing. See you next year". I also that a check up every 3 months with my PCP, blood work every 6 weeks and I'm told "Keep doing what you are doing. See you in 3 months". I have changed my lifestyle to the one that takes care of my kidney. I have had other health issues that makes keeping a happy kidney a little more difficult. But I am doing it, I am happy, my body is happy, and we are keeping the kidney happy.

If you do not change your lifestyle after the transplant, whether you have a live donor or not, you may have a happy kidney trying to live in an unhappy new home. I still have the question. Why do so many people feel that they have to have a "live" kidney donor?

mlmcg

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Hi @mlmcg, I'm confident that members here in the Transplant group agree with you. Taking care of one's body and making healthy lifestyle choices honors the gift of life that a donor (deceased or living) has made.

It's also important to note that organ transplant is not always necessitated because someone made poor lifestyle choices. There are many reasons that necessitate organ transplant. Whatever the reason, healthy lifestyle choices post transplant make sense. I see so many of you sharing how you take care of your mind and bodies. You strive to eat well, exercise, drink water, avoid infection, reduce stress, get restorative sleep, etc. In short, you choose health.

To your question about living vs. deceased donor, I'm not the most knowledgeable in this arena. A quick google search revealed this 2013 study. https://www.ncbi.nlm.nih.gov/pubmed/23746118 The study concluded "deceased donor liver transplantation (DDLT) and living donor liver transplantation (LDLT) have different complication profiles, but comparable hospital stays and survival rates. In areas of deceased donor organ shortages, LDLT offers an excellent alternative to DDLT because it facilitates access to a liver transplant without compromising short- or medium-term recipient outcomes."

Liked by gingerw

@mlmcg

I have a question. Why do so many people feel that they have to have a "live" kidney donor? I did not have a live donor and have had my kidney for over 10 years now. Every time I have my annual transplant check up, I'm told "Keep doing what you are doing. See you next year". I also that a check up every 3 months with my PCP, blood work every 6 weeks and I'm told "Keep doing what you are doing. See you in 3 months". I have changed my lifestyle to the one that takes care of my kidney. I have had other health issues that makes keeping a happy kidney a little more difficult. But I am doing it, I am happy, my body is happy, and we are keeping the kidney happy.

If you do not change your lifestyle after the transplant, whether you have a live donor or not, you may have a happy kidney trying to live in an unhappy new home. I still have the question. Why do so many people feel that they have to have a "live" kidney donor?

mlmcg

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@mlmcg congratulations on your new kidney turning 10. It sounds like you are doing a good job keeping it happy in a happy new home! I think one of the reasons folks are looking for living donors (me at least) is because the UNOS waiting list is so long and is getting bigger/longer every day. There is some research that shows that a living donor transplant is more successful and lasts longer than a deceased donor transplant and there are some practical timing/scheduling issues that can be dealt with if the transplant comes from a living donor. Having a living donor also helps shorten the UNOS waiting list for others. As a person of faith I believe the transplant will occur at the right time and from the right source. I am nearly 13 years post pancreas transplant (deceased donor) and am busy trying to keep it happy in a happy body. I’m also trying to stay as healthy as possible while waiting for a kidney transplant. I just returned from annual pretransplant evaluation at Mayo and my listing has been changed to inactive because my kidney function has improved and I’m too healthy for transplant at this time!

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