Anyone with polycystic kidney disease and managing to stay healthy despite all that?

[Kissthesky]

Hello! I am a 27-year old female who was diagnosed with the hereditary polycystic kidney disease at a very young age as a child. I haven’t had major issues with it but I do get kidney pains from home to time. I’m vegan, I work out most days of the week and I’ve been trying out intermittent fasting for the past month and a half! I feel like I may need to chill and not be so hardcore with the fasting thing haha because I’m afraid it might be messing with my hormones a bit! I believe all diseases can be reversed with the proper care and would love to know what others with this condition are doing to help heal their bodies? Please, I would love to reverse this disease while I’m young if possible!

[Sammi_n_Munk]

Hi Kissthesky! By the way, love that name! I found this article that you might find interesting and helpful. I found it to be quite hope-inspiring. According to this, PKD can be reversible! A medical team of scientists from Santa Barbara, I believe, explain how it works. I do hope you find this helpful, dear. Let us know your thoughts! All my best to you, and God bless. 🙏😊👍👍

google.ca/amp/s/medicalxpre...

[Sammi_n_Munk in reply to Sammi_n_Munk]

Also, forgot to mention, you said that you’re vegan. You may want to discuss with your doctor or renal dietician, whether or not a vegan / vegetarian diet plan is right for you. I say this because, as a diabetic, my doctors have always discouraged vegetarian diets for me, as they tend to be higher in carbohydrates and harmful for my blood glucose levels. If I understood the article above correctly, glucose can have a detrimental effect for those with PKD specifically. Hope this helps! 😊👍

[Kissthesky in reply to Sammi_n_Munk]

Hi! Thanks so much for replying to me my doctor actually told me that vegetarian/vegan is one of the best things for the kidneys! Especially my situation and overall I feel great with this lifestyle! I will definitely ask her about the high carb thing next time I see her though and how that will affect my blood glucose levels. Thanks for bringing that to my attention! I’ll check out that article right away <3 hope you have a lovely week!

[Green306]

Hello. I have just been diagnosed at age 67. I had no idea that this was in my family. I have had hematuria (blood in urine) all my life. I have led a normal life. Discovered this when high blood pressure developed. This disease is frustrating because seems to be little research and treatments.

[Sammi_n_Munk in reply to Green306]

Hi there Green306! Yeah, I can understand your situation. In my last bloodwork result sheet, I saw that there was bleeding in my urinary system. I suppose I shouldn’t have been surprised, as my urine output has been very dark at times. And you’re absolutely right about it being frustrating. It’s enough to make me cry sometimes. Take good care of yourself. I’ll keep you in my thoughts and prayers. 🙏🙂

[Green306 in reply to Sammi_n_Munk]

Thanks for your reply. Yes, I have cried too. Will keep you in my prayers also🙏

[Hidden in reply to Sammi_n_Munk]

See my reply to Green 306

[Kissthesky in reply to Green306]

Hi! Thanks for your reply we weren’t able to find any family history of it on my end either strangely. My blood pressure has been a bit high and I couldn’t understand why because I’m only 27, I’m active and eat a generally healthy diet. My doctor told me that having kidney disease can sometimes cause this which really sucks. I have cut back immensely on sodium and started incorporating more garlic into my diet because I’ve heard there are lots of benefits for blood pressure by doing this! Overall I feel fine but worry about the future from time to time 🙄 I agree, it’s very frustrating that I can’t find much research or anything about it and doctors aren’t super helpful either. I’ve been trying to learn more about it as much as I can and have read about studies on mice with the disease and how intermittent fasting/keto diet may help to shrink the cysts. You can talk to your doctor about what may be the best diet for you and that’s exactly what I am going to talk to mine about next time I see her! I truly believe we can control this disease by eating better and staying active!

[Green306 in reply to Kissthesky]

Yes, I read about this study also. I'm trying to stay active and have changed my diet. Wish you the best! 🙏

[Sammi_n_Munk in reply to Kissthesky]

Hi again Kissthesky! Yes, I’ve also heard that about garlic. It is helpful in lowering high blood pressure issues. But also, (and you should first check with your doctors on this), if your potassium levels are okay, then foods like bananas, oranges, tomatoes, avocados, and potatoes, that are higher in potassium, may also be good for high BP. You may want to try including some of those into your diet plan as well. I try to do that when my levels are within range. I hope this helps! 😊👍

[Kissthesky in reply to Sammi_n_Munk]

Hey again! 😁 yes I believe my potassium levels are okay and I LOVE avocado <3 I eat avocado toast for breakfast often and make smoothies with bananas some days. I’ve been doing soooo much research on kidney disease it isn’t even funny and I see so much on how potassium can be harmful and I get so freaked out because a lot of the healthy foods I eat are packed with it! Then I see some articles/videos on YouTube claiming we shouldn’t have ANY of those foods you just listed which I feel like is a little extreme? Because potassium is important and just because they’re high in it doesn’t mean we shouldn’t be able to enjoy them sometimes! I’m aware that the information in those videos is aimed at people in late stages/high potassium levels but I really wanna start taking care of this situation early! Then I worry myself sick from doing waaaay too much online research 😅 haha I need to give myself a break and live my life but just be conscious of my health at all times! I hope just changing what I eat/lifestyle updates can help lower my bp because I definitely don’t want to start taking medication for this. Thanks so much for all your help so far, I really appreciate it! 😊 Like Green 306 said above, it is an extremely frustrating disease and it sucks there seems like there isn’t enough information out there :/ that’s why we need to be fully aware of our own bodies and what they are trying to tell us they need + what they don’t need ✨

[Sammi_n_Munk in reply to Kissthesky]

Yes, I agree. With this disease, it’s like we’re forced to re-learn and contradict what we always believed to be logical. We were always told as youngsters, that fruits and vegetables, and milk and yogourt are good for you. Nuts and seeds are supposed to be a good source of fibre and omega 3, but now, the story has been changed, and all of those things now have to be monitored closely. This does suck! You’re absolutely right! Lol! Nice, huh? Lol! 😃😊👍

[Hidden in reply to Green306]

Wow, it took you long enough to get diagnosed! Are you using a real doctor? Now, about the blood in the urine: about a year ago this happened to me with it varying from to just a bit to very dark urine. I went through the usual testing with my GP, urologist and nephrologist. All said the same thing, that it was going to happen at my age (I'll be 84 in July, and am 4th stage ADPKD), and just put up with it. Not good enough! Then I remembered I had been to China several years back because they have been treating kidney problems for several thousand years. On of the first things done at the clinic was to check my pH, so I did that and found that my urine was very acidic. I asked my PCP if it was okay to take sodium bicarbonate tablets and he said that it couldn't hurt. Three days later my pH was in balance and my urine had cleared up! That eased up somewhat the strain on my kidneys. I try to maintain a little on the alkali side and that will vary how many tablets I take on a daily basis. Right now, it's four in the morning and four in the evening and I get by with checking my pH a couple of times a week. I don't know where you are but I get my sodium bicarbonate tablets from Amazon and the tablets are about as cheap as dirt. Remember now, check with your PCP before you do anything and good luck.

[Sammi_n_Munk in reply to Hidden]

Hi Oldearkie! Yes, I will try the sodium bicarbonate, but first, as you say, I would have to speak to my doctor. I just want to confirm with him that it wouldn’t be too much sodium for me, as I have been struggling with fluid retention issues lately as well.

I’ve also heard before that putting sodium bicarbonate (baking soda) in water can also be helpful. Do you think that the tablets would a better choice instead of sprinkling some of it in my bottled water? Would love to know what think. Thank you so much for your advice. 😊👍

[Hidden in reply to Sammi_n_Munk]

Of course, baking soda is the same thing but as far as I'm concerned, "sprinkling " baking soda powder isn't going to hack it. Tell you what: grind up eight tablets to powder form and see how much baking powder that is and go from there. To me, it's easier to swallow the tablets and be done with it. Your choice, let me know how it goes.

[Sammi_n_Munk in reply to Hidden]

Will do! Thanks Oldearkie! 😊👍

[Cyndimae]

Hi.. PKD is alot in my Family. My grandmother. My Dad. Me and my younger son. Im in stage 5 on dialysis waiting for a kidney Transplant. But my son whos 32 has it as well. We have learned there is a drug called Jynarque that was approved 5 years ago in Japan and 2 years ago in United States that if you start taking when your in your 20s or 30s it will slow down the PKD and you may never be at the point Im at now. My son is beginning the drug this year. It might be something to ask your kidney doctor about.

[Kissthesky in reply to Cyndimae]

Oh wow I have never heard of that drug! I will most definitely bring it up to my doctor at my appointment next month. Thank you so much for sharing 🙏🏻 and best of luck to you and your son <3

[Sammi_n_Munk in reply to Kissthesky]

This is for both Kissthesky & Cyndimae:

(And anyone else who may be helped by it.)

Hi guys! Below, I’ve copied a link from drugs.com regarding the adverse side effects of Jynarque. Personally, I found it a little scary (but then, I usually do. Lol!) I just thought you both might want to read up a little on it before proceeding with this medication.

In my opinion, it sounds as though it can create just as many, or maybe even more, health troubles than it can relieve. But, that is just my opinion.

Please forgive me if I come across as nosy, but it’s just that I’ve been burned before, by both over-the-counter and prescribed medications that has had a lasting effect on me. Ever since then, I don’t take side effects lightly anymore. I just would hate to know that one of us here on this forum, was suffering from something that could have been prevented.

About ten years back, my doctor put me on a high blood pressure medication called Coversyl Plus. In the long list of side effects that came with the package, I saw that it could cause gout, and I actually chuckled to myself, because I already had a small case of gout (only in my big toes at the time, as I was still “new” to the disease). Inside the following month of taking this drug, my gout exploded to my fingers, wrists, elbows and shoulders. The result? I was literally screaming in pain most days and crying. Now, I don’t laugh at side effects anymore.

I hope the information provided in the link below will be helpful to you. Please keep me posted as to your thoughts. Best of luck to you both with this, and God bless. 😊👍🙏

drugs.com/sfx/jynarque-side...

[Kissthesky in reply to Sammi_n_Munk]

Thanks so much for your thoughts Sammi! I totally can relate to feeling weary about drugs like this too. It’s the exact reason why I never wanna get on high blood pressure medications as well. Ugh I’m so sorry to hear about your negative experience with those kinds of meds! Are you trying anything natural to help control your blood pressure and is it working? Please let me know! We can all help each other out 😊 yes, I was looking over all the possible side effects of this pkd drug and I feel a little weird about it! I will bring it up to my doctor at my appointment next month just to see what she had to say about it. I think a lot of these drugs may be the reason conditions actually worsen though and they also bring on other issues which could be worse than what you’re already dealing with 🤷🏻‍♀️ Thanks again for your insight, it’s super helpful!!

[Sammi_n_Munk in reply to Kissthesky]

Yes! That is exactly what happens. At least that’s been my experience with medications, so I completely understand your hesitation with the BP meds.

My aunt recently had a minor heart attack, which I believe is due to a drug they put her on called, Carvedilol, which was meant to manage both her high BP, and congestive heart failure issues. I remember a few months ago, when she asked me to research it online for her, and the list of adverse side effects (one of which included a heart attack) was almost endless! I had advised her then to speak to her doctor, which she did, but they flat out refused to discontinue it for her. And here we are, she just came out of the hospital this past Saturday. Thank goodness she’s seems to be fine. I just hope there was no real damage done.

It’s just so scary. I have been managing mine (but just barely) with a very low sodium diet and exercise (walking) about twice a day. I try to consume foods that are high in potassium, but only when I know that my levels are within range, and that’s about all I can do. I try to limit my caffeine intake as well. I’ve been finding that helpful.

And you’re right. I’m glad that we have this forum to share our experiences, and offer suggestions and support. I have found it so helpful with all of the wise advice that I receive here. I often wonder how I would get along without it! 😊👍👍

[Kissthesky in reply to Sammi_n_Munk]

Ahhhh that’s so crazy they kept trying to get her to take those meds even after that! 😱 I have a really hard tome trusting doctors sometimes :/ I hope everything goes well for her and you too! Yes, physical activity is verrrrry important for all aspects of health! And omg I agree, I’m so glad I just found this site and already have learned so much from all you guys and to top it off you’re all so sweet! I was feeling so scared and upset, just wanting to take control of my own health and it gets lonely when no one really talks about this. It helps so much to be able to communicate with others going through the same thing and we can all help each other 😊

[Sammi_n_Munk in reply to Kissthesky]

That is so true! It’s difficult trying to manage an illness of this nature when most people in our own circles of family and friends don’t, or can’t identify with what we, as kidney patients, go through on a daily basis with all of our struggles. But here, we’re among our own kind. We can understand, and lend support to each other. I feel like we are so blessed. 😊👍💕💕

[Taffy20]

Hi Kissthesky

I have PKD and was diagnosed on my 30 S

I am now on 16 :8 fasting for 16 hours and eating in an 8 hour window eating a low carb Mediterranean way of eating I believe this helps with inflammation in the body

I drink 3 litres of water a day and walk for minimum of 30 mins every day

I’m like you trying to do everything I can to help myself be in the best health I can be

I am interested in finding out more about how we can reverse the cysts growing by what we eat so any information greatly received

I contracted Covid 9 weeks ago and was seriously ill for 5 weeks battling it for the last 3 weeks I have been recovering and had a few complications post virus but my kidney function is back to where it was before I contracted it and I believe I am still here because I changed the way I eat and drink x

[Taffy20 in reply to Taffy20]

I’m now 56 by the way

[Kissthesky in reply to Taffy20]

Hello! So happy to hear you have recovered from Covid-19!! I am on a similar intermittent fasting streak and have been doing it for about a month and a half. I’m hoping this proves to be beneficial because I’ve read it does wonders in a lot of areas of the body. I’ve also heard great things about the Mediterranean diet! Hmm I’m interested in trying that out. Can you give me an example of what you eat on a daily basis? Do you avoid coffee/alcohol completely or consume in moderation? I’ve cut back on both a lot but it will be difficult to give them up completely 😞 however I have grown extremely conscious of my health lately so where there’s a will there’s a way!

[Sammi_n_Munk in reply to Taffy20]

Glad to hear that you’re doing better, dear. I wish you all the best. I will keep you in my thoughts and prayers. Do continue to keep yourself well, and God bless. 🙏😊👍

[Taffy20]

Hi

I have given up caffeine but do have decaf coffee and tea

I have not had alcohol for about 3 months but tbh I have been very ill for most of that

I would now I think have the occasional glass of wine at special occasions but not have too much that’s my thoughts going forwards but I have lost 35 kgs in the last year so do not want to put the weight back on

I try not to eat processed foods and I do have things like poached egg on toast but now have GF bread

I eat avocado on toast

Greek yoghurt and berries with a few chopped pecans

Spinach and mushrooms with poached egg

Blueberry pancakes using GF flour

Those are some breakfast ideas which I eat around 10.30 11 am

Then I will have a snack at around 3 pm

With salad or berries and then a meal at 6 pm which is quorn , fish , chicken with veg or salad

I make cauliflower rice and sweet potato fries so minimise carbs which I get mostly from fresh food

I drink 3 L of water a day

Hope that helps

Michael Moseley fast 800 book has lovely recipes but I don’t stick to 800 calories as I find I need more than that

Hope that helps

[Sammi_n_Munk in reply to Taffy20]

Hi again guys! I hope you don’t mind, but I became a little curious when you (Taffy20) mentioned “Quorn”, as I’d never heard of it before, and just wanted to know what it was. I stumbled across this website (I’ve copied the link below for you), that contains some pretty frightening claims regarding the Quorn brand specifically, that I thought you may want to read through. Let me know what your thoughts are. Take good care. 😊👍

cspinet.org/tip/dangers-quo...

[Taffy20 in reply to Sammi_n_Munk]

Thank you for this I had not seen this and don’t eat a lot of it only now and again as I had gone off meat and was looking for a substitute protein option

If anyone has any other ideas for protein substitutes?

[Kissthesky in reply to Taffy20]

I use tempeh a lot for meat substitution and it’s rich in probiotics! You can look up recipes online for it 😊 I also just use a lot of tofu and as of late I try not to dabble too much with processed meat alternatives because of the sodium and all the other stuff in them 😱 if you have the craving though (trust me I do too haha) I like the beyond meat brand but do keep in mind the sodium content! Same with gardein products 💕

[Sammi_n_Munk in reply to Taffy20]

The one I’ve heard of the most on this forum is called, “Beyond Meat”. I don’t use it myself, as it tends to be high in sodium but, I know that some others here have said that it’s pretty good. I think it comes in burger form, but also loose, as in loose meat. 😊👍

[Taffy20]

Thanks for that really helpful 👍