Weight gain with PD

[NurseRed]

I was on PD and gained almost 80 lbs in 2 years i went for check up at transplant center and was told by surgeon i weighed to much and said i need to get off PD to rid of all calories it gave.Im frustrated needing to lose weight any advice what may have worked for you

[Bassetmommer]

Oh Nurse Red.... I am so much your sister on this fight. I was told the same thing when I went for the evaluation for transplant. I have to lose 22 pounds to qualify. I have done everything in my power to lose it and I am not. It is not about the food. I won't bore you with the details but I have seen so many specialist, its not funny. They all shrug. Even went for weight loss surgery and was denied. For PD, the base is glucose which is empty calories. Your situation is very common and it SUCKS. There are lower glucose level solutions so maybe your doctor can help with that. I was told I would have to drop my calory intake 500 to 750 to not gain weight on PD. Guess what? That would put my calorie intake around 500 to 800 calories..... I tried that once and it was awful and I was told it was not good for me.

Here is another thing. When you get a transplant, it also is very common to gain weight because of the steroids and the ability to eat more freely.

We as patients need to demand some changes with treatments.

[Hidden]

Hi Nurse Red. I've been on PD for about 4 months now. I was warned about the potential of gaining weight and I've managed to avoid doing so, so far. Last year, I went on intermittent fasting (IF) to lose weight knowing it was going to be harder to lose once I went into failure. I found IF to be an incredible way to lose weight. I avoided sugar and ate within a 6-hour window, from noon to six. I have largely returned to the IF routine simply because I find it easier for digestion purposes. I found Dr. Ekberg's videos on YT to be helpful and I also used an online program called Cronometer to record my food intake to make sure I was getting sufficient vitamins and minerals. I was also able to graph my progress on this program (they have a free version). I also exercised by walking for about 1 to 1.5 hours most days. I wish you all success!

[RonZone]

So Nurse Red, we totally understand your experience. You said "I was" on PD. I assume that means you are no longer on PD, is that correct? Would you like to return to PD?

I am surprised this topic has not come up more often in posts. When i was told that I was nearing stage 4 CKD because of Polycystic Kidney Disease, I attended a class that told me that if I wanted to do PD, weight gain would be an issue. So for the last two years, I've worked to reduce my weight by 40 lbs. I've lost 35 so far. I did that by following the stage 4 renal diet, and by simply cutting back on how much I ate. Not complicated, very simple process, but sure, it was dang tough giving up those baked potatoes with butter and sour cream! (I even dreamed about em for a while). But once I labeled them as "dirt" that helped me visually avoid them and other foods that were bad for my kidneys and caused weight gain. And I used a simple uncomplicated method for portion control. I got a postal scale and simply weighed my plate and kept my "plate weight" within a certain range. I know, not very technical but it works for me at this point. I might get something a tad more technical once I start PD. And a lot of days, I only ate two meals a day, which is similar to the Intermittent fasting that BlueSkyAngel is talking about. This has worked for me, and continues to work for me. NOW. Once I'm on PD (probably this summer), I will rework this system, probably adding different things to that list of stuff labeled "dirt" that I will no longer eat, based on a PD diet plan, but will continue to weigh my plate to keep it in line with whatever works for me. I'll do my homework and if I have to do an 1000 calorie diet for a while before switching back to 1200 calories, I'll find out what I can have that will give me the healthiest 1000 calorie experience I can get.

I didn't ask for any of this, it's not my "fault" that I have stage 5 CKD (PKD is inherited). but it danged sure is my responsibility to deal with it. And if I want to do PD (which I do over HD at this point), I'll simply have to deal with it until I find it will NOT work for me. And that could be a possibility, no way to know till it happens. I think that's what all of us do, we try stuff based on the best medical advice till we know whether it will work or not, then if not, we look at other options. It's good that we have more options now, unlike it was 30 years ago when in-center HDD was about all there was. And more options are on the horizon that could be even easier to do than what we have today. Wish I could live for another 50 years to see all of it happen. Some people on here will. And that's a good thing.

[Hidden in reply to RonZone]

Hi RonZone. I have PKD, too! I totally agree with your advice. I was really worried about weight gain on PD, but I do think that because I am following more of an intermittent fasting regimen - partly because it is easier on my digestion issues - I am not experiencing weight gain issues, as I feared. Diet is a bit of a challenge once you go on dialysis because things that were limited suddenly become the thing you should eat, like lots of protein, for example. So, it is great that you have a flexible attitude. Best wishes on the journey! 😊

[RonZone in reply to Hidden]

Ahh, so you also have PKD. Well let me bend your ear a tad more. Since you seem to be able to control your diet as needed, and seem to be doing an awesome job maintaining your weight using the methods you've put in place that work for you, I have a couple other questions for PKD - PD life. Say I want to walk more, and get more exercise once I'm on PD, how does that figure into the pain associated with PKD. This last fall, I started experiencing some pain in my back and flank. Then in October a cyst burst which took me to my knees for a day till that finally subsided a bit. But ever since. I've had more pain than I did before. Then in February, I had another cyst burst, which brought along the debilitating pain again. And since I've still got some constant pain. It seems to be worse when I lift something or bend over to pick something up, even getting up out of a chair causes pain. So tell me what your experience is with that kind of pain and can you still go for a pretty good walk without it causing additional pain? What other kinds of exercise do you do that doesn't cause additional pain. I've pretty much resigned to the idea that this pain is going to be there for the rest of my life. Just another thing I have to deal with, along with missing baked potatoes and other stuff that are not in the "dirt" column on my list of stuff. I am looking forward to eating more meat again once on PD! This mostly rabbit food diet is well, for rabbits (just my opinion, not the official opinion of HealthUnlocked!)

[Hidden in reply to RonZone]

LOL, Ron! I am sorry to learn you've been dealing with cyst pain. I have occasionally had flank soreness that seems to go away with a heating pad and some rest. I've never had cysts burst, but I did have a diverticulitis attack that did, indeed, bring me to my knees. I never really bounced back (I was at an eGFR of 9 at the time) after that and ended up on dialysis about 7 weeks later. Now that I have been on dialysis for about 4 months, I am feeling a LOT better. I do get a monthly Iron IV and take daily iron supplements and I feel like a human being again. I don't want to mislead you. There was a period of about 3-4 months where I was just trying to get my energy back once my eGFR dropped below 9, and exercise was out the door. I had mainly walked for 1 hour outside with my dog. Then I did a half-hour on the treadmill. Keep in mind that I was super motivated to get onto a transplant list and used this as my reason to keep going. Are you sure that the pain is not due to something else? Like a pinched nerve or something? Once you get into a routine with PD and regain energy, it is possible that these miseries you are now dealing with will subside. You don't realize how challenging living with end-stage renal disease is until you get to the other side, meaning being on PD. At least, this has been my experience, thus far. I have had a few minor setbacks (displaced catheter, a leak), but it comes with the territory, I guess. I am just grateful to have PD at home and the support to make it work. I don't think I really gave you any solutions other than to encourage you to keep a positive attitude and to do what you can do for your health and well-being. Every little bit helps. 😊

[RonZone in reply to Hidden]

Actually, I may talk to my GP about the pain and see if it's nerve related or something. That's a very helpful suggestion. I just figured it was all CKD based (I guess I can use CKD as my whipping boy for whatever ails me now). Yeah, my eGFR is 7 point something, so a tad hard to get up the energy to do a lot of exercising. Glad to hear that will possibly come back once I start PD. I do appreciate your response, gives me hope that better days are coming. I'll also take every motivation I can get my hands on to deal with all this. Other than the pain, it hasn't been that bad, but I've not yet had some of the "symptoms" I hear others write about which makes me feel very bad for them.

[Hidden in reply to RonZone]

Ron, me either, in terms of symptomatology. My nephrologist says that people with PKD tend to experience the end-stage a little differently than other diagnoses. So, it can be very much an individual journey. I do hope you look into the source of the pain. I did not know what to expect, even though my father went through the same thing. Being on PD is a more positive experience than I had hoped.

[RonZone in reply to Hidden]

Thanks for giving me hopeful thoughts about PD. Yeah, I'm gonna ask about this whole pain thing. I'm pretty much a wimp when it comes to hurting'

[Frankie24 in reply to RonZone]

I have PKD and had success with PD for two years up until about six months ago. I was so toxic I couldn’t eat or drink and really sick but I refused the Dr. and my team and my families pleas to go back on hemodialysis. So now I am back on it, feeling a bit better, hating every moment of it.🤨

[RonZone in reply to Frankie24]

Yeah, I've heard it is not a long term solution, but thought I would give it a go so I could still work a couple more years at least till I know that Medicare and the insurance I have will cover most of the expense without my having to cover it by continuing to work or robbing my 401k. Then I'll decide what to do at that point, as you have done. I know, there's no easy way out of this it seems at my age (69). Send a note anytime you need to vent. There's lots to vent about!

[Darlenia]

Hi NurseRed. Ugh, PD can truly be a problem for some individuals. My hubby, a T2D, managed to lose weight (and got off insulin) while on PD; he carefully watched not only sugars but particularly carbs to do so. As you know, there are solutions (yellow, green, red) with increasing levels of dextrose. The purple solution contains 7.5% icodextrin which isn't as effective in removing toxins, so my hubby used that only for long daytime dwells. But the other devil in the situation is that fruits, veggies, rice, wheat, etc. can be very high in carbs which, of course, turn to sugar downstream. Proteins (fish, chicken, meat, and more), on the other hand, have few if any carbs. Moreover, proteins are a good source of iron which is often seriously depleted in dialysis. So refocusing on good proteins may work for you. We also don't purchase anything without determining net carbs so label reading has become automatic for us. My hubby has since received a transplant, and has still managed to keep his weight stable, although he couldn't stave off diabetes anymore due to the immunosuppressants. Throughout, his primary doctor (in lockstep with his nephrologist) has been his guide and dietician. It's been a journey for sure. For us, it's lifelong awareness. Hope you, too, find a path forward that works for you.

[Frankie24]

It is very frustrating in deed. I was on it for two years, loved it ! Gained about 30 lbs. and had the peritoneal belly ! Unfortunately it stopped working for me and I am back on hemodialysis which I hate ! I also got a very serious case of peritonitis that landed me in the hospital shortly before I had to stop. It’s been about six weeks since I had my peritoneal catheter removed. Healed well and my tummy is back to flat. Wish I had some words of wisdom. Because the solution is sugar based it makes it really hard not to gain weight. Hopefully you are keeping an eye on your diet anyway. Best.