Diet interventions, type 2, kidneys are only at 30 %, kidney Donor Help
April 16, 2013 8:07 AM Subscribe
Hey All,
So a close family member has type 2 diabetes and now his kidneys are only functioning at 30%. Do you know of any diet interventions he can take that might help him avoid dialysis ? I am not sure if Dr. Neal Barnard's program can still help him at this point. He is in Columbus, Ohio. Any doctors or specialist, as well, in the area to refer him too would be much appreciated also. Right now, doctors are telling him that in 2 years he will have to go on dialysis. In addition, my boss' friend found a kidney donor on craig's list. Any ideas how to find him a donor as well with social media, websites, etc, if it comes to the route. thank you
I would be really cautious about a kidney donor on Craigslist. I would suggest consulting with an experienced lawyer prior to trying to solicit a kidney donation from a stranger rather than going thru UNOS or a family member.
posted by treehorn+bunny at 8:29 AM on April 16, 2013 [1 favorite]
posted by treehorn+bunny at 8:29 AM on April 16, 2013 [1 favorite]
Your friend absolutely needs dietary advice from a qualified professional, preferably a Registered Dietician with experience of his condition (not a generic nutritionist), not from random people who have never met him (i.e. us). Diet is an important part of Type II treatment and management, it needs to be done just as carefully as medication and other such treatments.
posted by shelleycat at 8:31 AM on April 16, 2013 [10 favorites]
posted by shelleycat at 8:31 AM on April 16, 2013 [10 favorites]
Here is a link to an article, basically the answer is to get the diabetes under control.
Here's a link on the Davita site (they are a dialysis provider).
As an overweight person, with one parent with Type-2 diabetes, I'm all plugged into this. I'm following a low carb regime and it sucks like nothing sucks, but I do it because I don't want to develop Type-2 diabetes.
One of the largest problems is compliance. How compliant is your relative? Are they super-strict, writing everything down, exercising regularly, taking bloodsugar measurements?
Or, are they like most Type-2 diabetics? (Not to cast aspersions, stats will bear this out.) Most Type-2 diabetics have regular "come to Jesus" moments with their disease. Their eyesite will change, or they'll have a week of high numbers and they'll start taking control in earnest. "I'm going to log my food and activity, test my blood three times today and be sure to take my meds, on time!" Then it's a baby shower, or a birthday or a stressful day, and suddenly we're not so strict. "I'll have a small piece of cake, and I'll just skip my grain serving tomorrow morning." or "I'm on a CRUISE! It can't hurt me that much for just a week, I'll be strict next week."
Trust me, I'm that person too. Every day is a challenge, and with tasty food, awesome stuff on TV and the fact that I'm tired and hungry...well the best intentions.
Diabetes can be turned around with diet, exercise and medication. Not easily and every day will be a struggle, but it can be done.
It's a matter of how committed your family member is. You can't want it for them, they have to decide that they're fully invested in making the change.
Also, your family member may be entitled to meeting with a dietician, that might prove valuable.
posted by Ruthless Bunny at 8:34 AM on April 16, 2013
Here's a link on the Davita site (they are a dialysis provider).
As an overweight person, with one parent with Type-2 diabetes, I'm all plugged into this. I'm following a low carb regime and it sucks like nothing sucks, but I do it because I don't want to develop Type-2 diabetes.
One of the largest problems is compliance. How compliant is your relative? Are they super-strict, writing everything down, exercising regularly, taking bloodsugar measurements?
Or, are they like most Type-2 diabetics? (Not to cast aspersions, stats will bear this out.) Most Type-2 diabetics have regular "come to Jesus" moments with their disease. Their eyesite will change, or they'll have a week of high numbers and they'll start taking control in earnest. "I'm going to log my food and activity, test my blood three times today and be sure to take my meds, on time!" Then it's a baby shower, or a birthday or a stressful day, and suddenly we're not so strict. "I'll have a small piece of cake, and I'll just skip my grain serving tomorrow morning." or "I'm on a CRUISE! It can't hurt me that much for just a week, I'll be strict next week."
Trust me, I'm that person too. Every day is a challenge, and with tasty food, awesome stuff on TV and the fact that I'm tired and hungry...well the best intentions.
Diabetes can be turned around with diet, exercise and medication. Not easily and every day will be a struggle, but it can be done.
It's a matter of how committed your family member is. You can't want it for them, they have to decide that they're fully invested in making the change.
Also, your family member may be entitled to meeting with a dietician, that might prove valuable.
posted by Ruthless Bunny at 8:34 AM on April 16, 2013
If your family member still drinks soda, restrict all dark sodas. Clear ones, like sprite or ginger ale are okay, but the darker ones contain phosphorus that the kidneys have to work to remove. Root bear, despite being dark, is okay though.
WTF? No diabetic should EVER be drinking regular soda of ANY KIND. Diet soda only. The blood sugar spike from regular soda (or juice!) is... dramatic.
posted by kestrel251 at 8:46 AM on April 16, 2013 [1 favorite]
WTF? No diabetic should EVER be drinking regular soda of ANY KIND. Diet soda only. The blood sugar spike from regular soda (or juice!) is... dramatic.
posted by kestrel251 at 8:46 AM on April 16, 2013 [1 favorite]
Response by poster: yeah. I know. We does NOT drink soda.
posted by TRUELOTUS at 8:50 AM on April 16, 2013
posted by TRUELOTUS at 8:50 AM on April 16, 2013
Yes, your family member should definitely consult a registered dietitian. What applies to someone else may not apply to him.
My dad was in a similar situation. Royalsong is absolutely right about phosphorus. My father also had to seriously restrict his sodium and potassium intake. And sugar, obviously.
(If your family member does end up on dialysis for a while, by the way, it's totally not the end of the world. My dad's been on it for a couple of years, and while we're always hoping a donor kidney is just around the corner, he's managing quite well in the meantime.)
posted by QuickedWeen at 8:51 AM on April 16, 2013 [1 favorite]
My dad was in a similar situation. Royalsong is absolutely right about phosphorus. My father also had to seriously restrict his sodium and potassium intake. And sugar, obviously.
(If your family member does end up on dialysis for a while, by the way, it's totally not the end of the world. My dad's been on it for a couple of years, and while we're always hoping a donor kidney is just around the corner, he's managing quite well in the meantime.)
posted by QuickedWeen at 8:51 AM on April 16, 2013 [1 favorite]
Nthing the "talk to a professional" wisdom above, but I wanted to add that I heard a VA nephrologist once talking about the tremendous luck they were having with keeping patients off dialysis with a vegan diet. He himself wasn't vegan, and he seemed like he was still surprised at the results they were seeing, but that might be one angle to look at.
posted by ldthomps at 9:10 AM on April 16, 2013
posted by ldthomps at 9:10 AM on April 16, 2013
ibuprofen (Motrin, Advil), even taken at what are "normal" doses, can compromise kidney function,too. Many, many medications need to be dose-adjusted with renal insufficiency, but this is something that his physician needs to do.
He now has two medical conditions, diabetes and renal insufficiency. It's worth noting that the two most common reasons for kidney failure leading to dialysis and transplantation are diabetes and hypertension. You don't mention if he has hypertension, but if so, this makes renal insufficiency and failure even more common.
This is complicated and he needs competent medical oversight, which could well include a dietitian. His nephrologist can advise him regarding the possibility of kidney transplantation. This is a well-organized system in the US, and most programs encourage living donation, where a matching relative (or sometimes friend) can donate one of their kidneys. Again, your family member should talk with his doctor. General information on organ donation can be found at the UNOS site, the United Network for Organ Sharing, which manages and oversees organ and tissue transplantation in the United States: http://www.unos.org/
I would certainly start with medically vetted organizations rather than Craigslist!
posted by citygirl at 9:29 AM on April 16, 2013 [1 favorite]
He now has two medical conditions, diabetes and renal insufficiency. It's worth noting that the two most common reasons for kidney failure leading to dialysis and transplantation are diabetes and hypertension. You don't mention if he has hypertension, but if so, this makes renal insufficiency and failure even more common.
This is complicated and he needs competent medical oversight, which could well include a dietitian. His nephrologist can advise him regarding the possibility of kidney transplantation. This is a well-organized system in the US, and most programs encourage living donation, where a matching relative (or sometimes friend) can donate one of their kidneys. Again, your family member should talk with his doctor. General information on organ donation can be found at the UNOS site, the United Network for Organ Sharing, which manages and oversees organ and tissue transplantation in the United States: http://www.unos.org/
I would certainly start with medically vetted organizations rather than Craigslist!
posted by citygirl at 9:29 AM on April 16, 2013 [1 favorite]
Response by poster: LDTHOMPS! Thank you! This was my thought 2.
posted by TRUELOTUS at 9:32 AM on April 16, 2013
posted by TRUELOTUS at 9:32 AM on April 16, 2013
Response by poster: Thanks Citygirl. I never knew of UNOS.
posted by TRUELOTUS at 9:34 AM on April 16, 2013
posted by TRUELOTUS at 9:34 AM on April 16, 2013
I am at high risk for diabetes, not Type 1 or 2 but something called CF related diabetes (CFRD). I used to be severely hypoglycemic. Dietary changes have done a lot to stabilize my blood sugar issues. Some thoughts, off the top of my head, about diabetes and other stuff I happen to know:
I have seen articles linking diabetes to inflammation. There are books on anti-inflammatory diets. The main thing I did to address inflammation was eat a more alkaline diet.
I have worked on eating cleaner so my kidneys and liver and defective cells have less to cope with. I favor things like kosher meat or organic, grass-fed meat. Also eating lower on the food chain helps. If I can't find meat of acceptable quality, I eat vegetarian.
I read about altitude sickness. My medical condition involves serious lung and gut issues. People seem to think these are "coincidental" and unrelated. I always felt they were related. But reading about what happens at altitude, I learned that you urinate more at altitude because the thin air means you cannot breath out as much waste. It accumulates in the blood and then the body shunts the excess out through the kidneys. So I worked on blood and kidney health to help my lung issues. I would tell your relative to work on lung health to take stress off the kidneys. Keep the home dust free. Etc.
posted by Michele in California at 9:37 AM on April 16, 2013
I have seen articles linking diabetes to inflammation. There are books on anti-inflammatory diets. The main thing I did to address inflammation was eat a more alkaline diet.
I have worked on eating cleaner so my kidneys and liver and defective cells have less to cope with. I favor things like kosher meat or organic, grass-fed meat. Also eating lower on the food chain helps. If I can't find meat of acceptable quality, I eat vegetarian.
I read about altitude sickness. My medical condition involves serious lung and gut issues. People seem to think these are "coincidental" and unrelated. I always felt they were related. But reading about what happens at altitude, I learned that you urinate more at altitude because the thin air means you cannot breath out as much waste. It accumulates in the blood and then the body shunts the excess out through the kidneys. So I worked on blood and kidney health to help my lung issues. I would tell your relative to work on lung health to take stress off the kidneys. Keep the home dust free. Etc.
posted by Michele in California at 9:37 AM on April 16, 2013
First, I recommend that your family member ask his doctor about good dietary choices, and ask for a referral to a registered dietitian. Proper medical advice is what's needed here. If he's not getting the information he needs from his current doctors, he should find new doctors. (I'm sorry I have no recommendations in the Columbus area.)
I highly recommend looking at the National Kidney Foundation's website. They have a lot of useful information and resources. There's general information about kidney disease; there's information for patients; and there's information for family members. They have information about chronic kidney disease, about dialysis, and about kidney transplants (including finding/being a living donor).
I also recommend calling the National Kidney Foundation's help line at 1-855-NKF-CARES (1-855-653-2273). Patients, family members, and caregivers can call. The line is staffed by trained professionals. I bet they will be able to help you with your questions, or point you towards someone who can.
Regarding kidney donation: I recommend reading the National Kidney Foundation information about organ donation and transplantation.
Becoming a living organ donor is not a quick or easy process, even if you are a good tissue match. Potential living donors have to go through a long, rigorous process of medical testing, including psychological testing, to make sure they aren't at risk of any complications or problems from donating.
Moreover, your family member will have to be evaluated by a transplant center and approved to receive a transplant before any potential living donor can even start being tested. That evaluation process can take months, even a year or more.
One of my family members has been going through the evaluation process and is currently on dialysis. The most important thing has been good doctors he can trust, who will talk with him, answer his questions, and give him all the medical information and advice he needs about living with chronic kidney disease.
posted by snowmentality at 10:04 AM on April 16, 2013 [2 favorites]
I highly recommend looking at the National Kidney Foundation's website. They have a lot of useful information and resources. There's general information about kidney disease; there's information for patients; and there's information for family members. They have information about chronic kidney disease, about dialysis, and about kidney transplants (including finding/being a living donor).
I also recommend calling the National Kidney Foundation's help line at 1-855-NKF-CARES (1-855-653-2273). Patients, family members, and caregivers can call. The line is staffed by trained professionals. I bet they will be able to help you with your questions, or point you towards someone who can.
Regarding kidney donation: I recommend reading the National Kidney Foundation information about organ donation and transplantation.
Becoming a living organ donor is not a quick or easy process, even if you are a good tissue match. Potential living donors have to go through a long, rigorous process of medical testing, including psychological testing, to make sure they aren't at risk of any complications or problems from donating.
Moreover, your family member will have to be evaluated by a transplant center and approved to receive a transplant before any potential living donor can even start being tested. That evaluation process can take months, even a year or more.
One of my family members has been going through the evaluation process and is currently on dialysis. The most important thing has been good doctors he can trust, who will talk with him, answer his questions, and give him all the medical information and advice he needs about living with chronic kidney disease.
posted by snowmentality at 10:04 AM on April 16, 2013 [2 favorites]
Jumping back in to add that it is imperitive the recipient have medical insurance, or Medicare or Medicaid before a transplant center will porceed with a work-up. The citation of the National Kidney Foundation above is excellent. Their information is dependable and accurate.
Also, to expand on the process of transplant evaluation, each transplant center (and there might be several in a good-sized city) has its own program, and their specific requirements might vary a little depending on the comfort level and experience of the program's team. If he doesn't like one program, he can request an evaluation at another. For example, some centers refuse to consider transplanting smokers, while others are not as strict. You don't "sign up" for a transplanted organ - you have to go through a work-up, as snowmentality mentions, and you have to be accepted, which is called "listed". There is no way around this in the USA, and transplant centers are monitored closely to make sure nobody "jumps the list". Even if your relative has a living-donor who is willing to donate, that donor will need to cooperate with all the testing that is requested, and his or her own medical issue might disqualify them. Prime among them would be that they do not "match". Kidneys are allocated according to blood type, antigen, and antibody match, which is a simple blood test. Having the same blood type is not enough. A few centers are working on ways to transplant mis-matched kidneys, but this is not universally available.
Additionally, centers are scored on the long-term health of the patients they transplant, so they want to transplant people who are good risks -- who will take their meds, continue to have insurance, continue to have a working phone and not find themselves living on the street without an address to deliver medications to. This might sound extreme and unlikely, but I assure you it is not. I know a surgeon who transplanted a woman who fell back into drug use, and he went into a crack house to find her. There was not a good end to that story. Now he will not list any ex-crack addicts.
Waiting times for kidneys are long, sometimes years. This is why living-donors are so important, and why transplant programs encourage them.
posted by citygirl at 11:05 AM on April 16, 2013
Also, to expand on the process of transplant evaluation, each transplant center (and there might be several in a good-sized city) has its own program, and their specific requirements might vary a little depending on the comfort level and experience of the program's team. If he doesn't like one program, he can request an evaluation at another. For example, some centers refuse to consider transplanting smokers, while others are not as strict. You don't "sign up" for a transplanted organ - you have to go through a work-up, as snowmentality mentions, and you have to be accepted, which is called "listed". There is no way around this in the USA, and transplant centers are monitored closely to make sure nobody "jumps the list". Even if your relative has a living-donor who is willing to donate, that donor will need to cooperate with all the testing that is requested, and his or her own medical issue might disqualify them. Prime among them would be that they do not "match". Kidneys are allocated according to blood type, antigen, and antibody match, which is a simple blood test. Having the same blood type is not enough. A few centers are working on ways to transplant mis-matched kidneys, but this is not universally available.
Additionally, centers are scored on the long-term health of the patients they transplant, so they want to transplant people who are good risks -- who will take their meds, continue to have insurance, continue to have a working phone and not find themselves living on the street without an address to deliver medications to. This might sound extreme and unlikely, but I assure you it is not. I know a surgeon who transplanted a woman who fell back into drug use, and he went into a crack house to find her. There was not a good end to that story. Now he will not list any ex-crack addicts.
Waiting times for kidneys are long, sometimes years. This is why living-donors are so important, and why transplant programs encourage them.
posted by citygirl at 11:05 AM on April 16, 2013
In terms of finding a donor through social media, you first need to check with your center to make sure that they will allow you to get an altruistic donation from a stranger you met online. Not all centers allow this.
In my research on people soliciting altruistic donors online (self link), here were some of the major findings. The people I talked to:
- Had pretty much exhausted their offline options. Relatives and friends were all mismatches, and they had no one else they knew that could donate.
- Treated it like a marketing campaign and posted frequently about not just their need but about kidney disease, dialysis, kidney education issues in general frequently
- Tried to keep their messages positive while still stressing how sick they were and how much they needed a kidney
- Were willing to share really personal details about their health on the open web. Lots of people used Facebook, mostly because it is built in to one's social network already; that might be what you would consider as well. It makes it easy to get friends to share your posts, too, which exponentially increases the number of eyeballs on your posts.
- Told some kind of story about themselves that made them an interesting character
- Posted pictures of themselves and their family, which personified them more
- Often had help managing their online presence from a caregiver or a friend
- Had testimonials from friends about why they were a good person to donate a kidney to rather than relying on saying nice things about themselves
- Aggressively blocked the people who offered them a kidney for payment, as that is illegal
These strategies do not guarantee an altruistic donor. They were just things that people in my study (which was only with 8 people, 4 who were successful and 4 who were still looking) did as part of their online presence.
I am currently working on a more comprehensive paper that goes into the findings in more detail. MeMail me if you would like a draft.
posted by k8lin at 3:01 PM on April 16, 2013 [2 favorites]
In my research on people soliciting altruistic donors online (self link), here were some of the major findings. The people I talked to:
- Had pretty much exhausted their offline options. Relatives and friends were all mismatches, and they had no one else they knew that could donate.
- Treated it like a marketing campaign and posted frequently about not just their need but about kidney disease, dialysis, kidney education issues in general frequently
- Tried to keep their messages positive while still stressing how sick they were and how much they needed a kidney
- Were willing to share really personal details about their health on the open web. Lots of people used Facebook, mostly because it is built in to one's social network already; that might be what you would consider as well. It makes it easy to get friends to share your posts, too, which exponentially increases the number of eyeballs on your posts.
- Told some kind of story about themselves that made them an interesting character
- Posted pictures of themselves and their family, which personified them more
- Often had help managing their online presence from a caregiver or a friend
- Had testimonials from friends about why they were a good person to donate a kidney to rather than relying on saying nice things about themselves
- Aggressively blocked the people who offered them a kidney for payment, as that is illegal
These strategies do not guarantee an altruistic donor. They were just things that people in my study (which was only with 8 people, 4 who were successful and 4 who were still looking) did as part of their online presence.
I am currently working on a more comprehensive paper that goes into the findings in more detail. MeMail me if you would like a draft.
posted by k8lin at 3:01 PM on April 16, 2013 [2 favorites]
Find a RD in your area here. Kidney disease isn't something to monkey around with dietary-wise without expert advice. There are very specific things you and he should know regarding potassium, phosphorus, sodium, and protein.
posted by Ouisch at 4:30 PM on April 16, 2013 [1 favorite]
posted by Ouisch at 4:30 PM on April 16, 2013 [1 favorite]
Oh, and I should add:
More info about kidney disease and health care here.
posted by Ouisch at 4:37 PM on April 16, 2013
More info about kidney disease and health care here.
posted by Ouisch at 4:37 PM on April 16, 2013
I have chronic kidney disease, though I have more function at this point than your relative.
PLEASE don't suggest they make major dietary changes without consulting a registered dietitian or at the very least their nephrologist. Every patient is different, and dietary modifications need to take the individual's lab results into account. Also, the nutritional requirements of people with kidney disease differ pre- and post-dialysis, which sometimes gets muddled if you're looking for information online.
Here's one way the individual numbers are important: While it's true that too much potassium is a problem for folks with kidney disease, I happen to have a potassium deficiency for which I take a supplement prescribed by my kidney specialist - if we weren't watching my lab results closely and I was following the usual low-potassium recommendations I'd be in big trouble. Same with phosphorus, which I don't have problems with at the moment.
I do watch my sodium intake, but too much of that makes my hands swell (and way too much makes my ankles swell), so it's pretty clear when I've had too much and avoiding the discomfort is good incentive for me to keep an eye on it.
My nephrologist's office has a registered dietitian on staff - I don't know how common this is but you might want to check with your relative's nephrologist (and if your relative doesn't have a nephrologist they should get one).
posted by camyram at 5:25 PM on April 16, 2013 [2 favorites]
PLEASE don't suggest they make major dietary changes without consulting a registered dietitian or at the very least their nephrologist. Every patient is different, and dietary modifications need to take the individual's lab results into account. Also, the nutritional requirements of people with kidney disease differ pre- and post-dialysis, which sometimes gets muddled if you're looking for information online.
Here's one way the individual numbers are important: While it's true that too much potassium is a problem for folks with kidney disease, I happen to have a potassium deficiency for which I take a supplement prescribed by my kidney specialist - if we weren't watching my lab results closely and I was following the usual low-potassium recommendations I'd be in big trouble. Same with phosphorus, which I don't have problems with at the moment.
I do watch my sodium intake, but too much of that makes my hands swell (and way too much makes my ankles swell), so it's pretty clear when I've had too much and avoiding the discomfort is good incentive for me to keep an eye on it.
My nephrologist's office has a registered dietitian on staff - I don't know how common this is but you might want to check with your relative's nephrologist (and if your relative doesn't have a nephrologist they should get one).
posted by camyram at 5:25 PM on April 16, 2013 [2 favorites]
This thread is closed to new comments.
posted by royalsong at 8:20 AM on April 16, 2013 [1 favorite]