Live Donor Weight Loss Prior to Transplant

Posted by christygb @christygb, Sep 16, 2019

I am hoping to be considered a kidney and liver donor for my sister, but my BMI is currently 40. I'm losing weight now, and also planning bariatric surgery (gastric sleeve) in January (motivated by my own health) but am curious to know if this would pull me out of consideration to be a donor? My sister is just beginning the process with her transplant team, so there are no surgery dates planned at this time. Anyone else have experience with this or know about these considerations?

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Hi @christygb and welcome to Connect. I applaud your interest in becoming a living organ donor.
Only medical professionals can determine if someone is a suitable donor. Generally speaking, if a person interested in donating has a history of kidney disease, uncontrolled high blood pressure, diabetes, cancers, heart disease, liver disease, lung disease, certain kidney disorders, colon disorders, nerve problems or psychiatric disorders, they may be ruled out as a living donor.

To find out about your personal eligibility, your first step would be to fill out a Health History Questionnaire found here: http://mayocl.in/2oCMZOx. Complete the form when you have adequate time and space to concentrate on each question. Before you begin, please obtain your current height and weight. It is also recommended that you use a laptop or desktop computer.

I’d also like to bring in @jolinda @contentandwell @mauraacro and @rebekahinvt into this discussion as they may have more information or experience about weight loss and gastric sleeve and donor eligibility.

Christy, have you talked your sister’s doctors about your hope to be a donor and weight loss options that will maintain eligibility?

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@christygb
Living donors are so amazing to me! God bless you for even considering being your sister's donor. You represent the best of humanity, selfless, giving and self-sacrificing. After receiving a kidney from a living donor myself I have enjoyed a remarkably better quality of life and have avoided dialysis. Yay living donors!!!

I hope your upcoming surgery goes well, it sounds like you are choosing this option out of self love and wanting to live a healthier life. Good for you, that takes more courage than many people know.

From what I understand donation selection takes into account the whole person. Things like blood type, blood pressure, diabetes, kidney and liver function, life style, financial stability, mental and social factors all play a roles. Many people who fall outside of typical ranges have qualified to donate. Less than 2 weeks ago I saw an article about a man who lost 175lbs to qualify for his sister. I've also read about people who generally considered "too old" are in such great shape that they qualify. I think tireless pursuit is sometimes needed. If you hear "no", ask "why"!

Keep us posted and best of luck to you.

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Touché, @jolinda! "If you hear "no", ask "why"!" <- that is brilliant advice.

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@colleenyoung

Hi @christygb and welcome to Connect. I applaud your interest in becoming a living organ donor.
Only medical professionals can determine if someone is a suitable donor. Generally speaking, if a person interested in donating has a history of kidney disease, uncontrolled high blood pressure, diabetes, cancers, heart disease, liver disease, lung disease, certain kidney disorders, colon disorders, nerve problems or psychiatric disorders, they may be ruled out as a living donor.

To find out about your personal eligibility, your first step would be to fill out a Health History Questionnaire found here: http://mayocl.in/2oCMZOx. Complete the form when you have adequate time and space to concentrate on each question. Before you begin, please obtain your current height and weight. It is also recommended that you use a laptop or desktop computer.

I’d also like to bring in @jolinda @contentandwell @mauraacro and @rebekahinvt into this discussion as they may have more information or experience about weight loss and gastric sleeve and donor eligibility.

Christy, have you talked your sister’s doctors about your hope to be a donor and weight loss options that will maintain eligibility?

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Thank you so much for your response and information! I will fill out the health form soon. Luckily I will be joining my sister for several of her tests an appointments with her treatment team happening in October. This will include an information session, which should be very interesting. I'll take notes. It would be nice to be able to address the issue of my weight and weight loss if I'm given the opportunity to ask. Her transplant coordinator mentioned that she should get an answer as to whether or not she is a candidate for surgery by the end of October.

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@jolinda

@christygb
Living donors are so amazing to me! God bless you for even considering being your sister's donor. You represent the best of humanity, selfless, giving and self-sacrificing. After receiving a kidney from a living donor myself I have enjoyed a remarkably better quality of life and have avoided dialysis. Yay living donors!!!

I hope your upcoming surgery goes well, it sounds like you are choosing this option out of self love and wanting to live a healthier life. Good for you, that takes more courage than many people know.

From what I understand donation selection takes into account the whole person. Things like blood type, blood pressure, diabetes, kidney and liver function, life style, financial stability, mental and social factors all play a roles. Many people who fall outside of typical ranges have qualified to donate. Less than 2 weeks ago I saw an article about a man who lost 175lbs to qualify for his sister. I've also read about people who generally considered "too old" are in such great shape that they qualify. I think tireless pursuit is sometimes needed. If you hear "no", ask "why"!

Keep us posted and best of luck to you.

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Thank you so much for the lovely kind words as well as the encouragement! I will remember to ask "why" if faced with a "no"! It would be wonderful if 2020 were the Year of Getting Healthy for all of us!

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I am christygb’s grateful sister who will be tested for kidney/liver transplant in Oct. I appreciate this site to get information prior to testing.

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@colleenyoung

Hi @christygb and welcome to Connect. I applaud your interest in becoming a living organ donor.
Only medical professionals can determine if someone is a suitable donor. Generally speaking, if a person interested in donating has a history of kidney disease, uncontrolled high blood pressure, diabetes, cancers, heart disease, liver disease, lung disease, certain kidney disorders, colon disorders, nerve problems or psychiatric disorders, they may be ruled out as a living donor.

To find out about your personal eligibility, your first step would be to fill out a Health History Questionnaire found here: http://mayocl.in/2oCMZOx. Complete the form when you have adequate time and space to concentrate on each question. Before you begin, please obtain your current height and weight. It is also recommended that you use a laptop or desktop computer.

I’d also like to bring in @jolinda @contentandwell @mauraacro and @rebekahinvt into this discussion as they may have more information or experience about weight loss and gastric sleeve and donor eligibility.

Christy, have you talked your sister’s doctors about your hope to be a donor and weight loss options that will maintain eligibility?

Jump to this post

@christygb @colleenyoung Hi Christy, and welcome to Connect to you and your sister, @birdienanie. I was a liver transplant recipient in September of 2016 - now approaching my third “transplantiversary”! had been trying to lose weight and had been, very gradually, but knowing I was facing very major surgery I decided to try harder. Plus my cirrhosis was caused by fatty liver which I’m sure was due to my weight. So, I stepped up the healthy eating and exercise.

The aids that really helped me were “MyFitnessPal.com”, a application where you record EVERYTHING that you eat. If you are not honest you are cheating yourself. You provide your weight and some other vitals to the program and at the end of each day it gives you an approximation of how much you will weigh in 5 weeks if you continue following what you did that day. If you don’t eat enough it won’t give you that information because it’s not healthy to starve yourself either. It really can be an eye-opener to know just how many mindless calories you are consuming. By doing it I learned a lot. I still use it sometimes if I gain some weight back, but for the most part I’ve learned just what I should and shouldn’t do. If you exercise you can record that too and it will figure that in. At the time I had a “Misfit” fitness tracker and it synced with MyFitnessPal automatically. I still wear a fitness tracker but I can’t get my current one to sync but you can record what you did manually.

My second aid was the fitness tracker. Using it gave me more incentive to reach the goal I had set for myself. There are fitness trackers in every price range. The “Misfit” was very good and reasonably priced. I just checked their website and they no longer have the tracker I had but they do have one, the “Ray”, which is $79.99 and right now is 20% off! I’m sure there other brands also that are in that price range or even less expensive. For me, that really helped to keep me active.

My last aid was my scale. I bought a scale a few years ago that not only gives you your weight but is also gives an approximation of the fluid you are retaining. It helped me because if my weight went up but then I saw I was retaining fluid I realized it was just temporary water weight. When I bought the scale on Amazon it was around $45.

I hope some of these ideas might help you, they sure did help me. My PCP was very impressed with how well I did, and I am keeping it off.

I am very impressed with your selflessness in wanting to be a donor for your sister. Will they allow a live donor to donate both organs? The wait for livers is not nearly as long as it is for kidneys so even if you could just donate that when she got the call that they had a liver it would be great. I waited about a year and a half for a liver. My niece’s husband just had a kidney transplant after about 5 years of being listed and having dialysis.

Please just ask if you or your sister have any questions, that’s what we are here for. I wish I had known about this resource when I was waiting. I hope you will keep us appraised of the progress that you and your sister are making as you move forward to these transplants.
JK

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@contentandwell

@christygb @colleenyoung Hi Christy, and welcome to Connect to you and your sister, @birdienanie. I was a liver transplant recipient in September of 2016 - now approaching my third “transplantiversary”! had been trying to lose weight and had been, very gradually, but knowing I was facing very major surgery I decided to try harder. Plus my cirrhosis was caused by fatty liver which I’m sure was due to my weight. So, I stepped up the healthy eating and exercise.

The aids that really helped me were “MyFitnessPal.com”, a application where you record EVERYTHING that you eat. If you are not honest you are cheating yourself. You provide your weight and some other vitals to the program and at the end of each day it gives you an approximation of how much you will weigh in 5 weeks if you continue following what you did that day. If you don’t eat enough it won’t give you that information because it’s not healthy to starve yourself either. It really can be an eye-opener to know just how many mindless calories you are consuming. By doing it I learned a lot. I still use it sometimes if I gain some weight back, but for the most part I’ve learned just what I should and shouldn’t do. If you exercise you can record that too and it will figure that in. At the time I had a “Misfit” fitness tracker and it synced with MyFitnessPal automatically. I still wear a fitness tracker but I can’t get my current one to sync but you can record what you did manually.

My second aid was the fitness tracker. Using it gave me more incentive to reach the goal I had set for myself. There are fitness trackers in every price range. The “Misfit” was very good and reasonably priced. I just checked their website and they no longer have the tracker I had but they do have one, the “Ray”, which is $79.99 and right now is 20% off! I’m sure there other brands also that are in that price range or even less expensive. For me, that really helped to keep me active.

My last aid was my scale. I bought a scale a few years ago that not only gives you your weight but is also gives an approximation of the fluid you are retaining. It helped me because if my weight went up but then I saw I was retaining fluid I realized it was just temporary water weight. When I bought the scale on Amazon it was around $45.

I hope some of these ideas might help you, they sure did help me. My PCP was very impressed with how well I did, and I am keeping it off.

I am very impressed with your selflessness in wanting to be a donor for your sister. Will they allow a live donor to donate both organs? The wait for livers is not nearly as long as it is for kidneys so even if you could just donate that when she got the call that they had a liver it would be great. I waited about a year and a half for a liver. My niece’s husband just had a kidney transplant after about 5 years of being listed and having dialysis.

Please just ask if you or your sister have any questions, that’s what we are here for. I wish I had known about this resource when I was waiting. I hope you will keep us appraised of the progress that you and your sister are making as you move forward to these transplants.
JK

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@contentandwell thank you for the information. I'm doing all of the above with very good success and will keep going! Congratulations on your "liverversary" 🙂 that is so wonderful, and I'm so happy that you are healthy! Thanks for offering to be a resource for us.

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@christygb You have some very exciting and positive things ahead of you!
A few replies have already touched on what I would say.
Fill out the donor questionnaire now even though it's early. A nurse will call you and go over your answers so that you'll have some info to start with.
A higher BMI may not be a "deal breaker". If you pass the initial evaluation, there will be many tests to check your overall health which will determine if it's safe for you to donate.
I thought I read in another post that Mayo doesn't do both liver and kidney transplants from the same living donor but can't find it. The nurse/social workers at Mayo are excellent and will be able to answer that for you.
Whatever the outcome of your evaluation is, you are doing great things. Deciding to lose weight for your health will pay off for you and your family. Inquiring about live organ donation means 1 more person in the world has info that they can pass on to others.
Good luck to both of you

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@birdienanie

I am christygb’s grateful sister who will be tested for kidney/liver transplant in Oct. I appreciate this site to get information prior to testing.

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This is exciting @birdienanie and @christygb. I think this may be the first time that we've had the opportunity to support both the potential donor and the recipient in the Transplant support group here on Connect. Someone correct me if I'm wrong.

@christygb any more questions before you go for testing in October?
@birdienanie, it would be great to learn more about you too. What has led to your needing a double organ transplant? How are you doing?

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