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PKD Discussion Forums - View topic - My story and a question, Alkaline Diet?

My story and a question, Alkaline Diet?

Connect with others who are living with PKD and share stories and encouragement.
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Posts: 1
Joined: Tue Jan 05, 2016 10:15 pm

My story and a question, Alkaline Diet?

Postby Hope79 » Wed Jan 06, 2016 12:15 am

I found out I have PKD when I was 26. I felt a lump in my upper right abdomen just under my rib cage, I was concerned as there wasn't one present on the other side. Doesn't everyone have one? Turns out it wasn't just me being paranoid, ultra sounds revealed multiple cysts on both kidneys with more on the right than left, largest cyst 7cm. I only went to one nephrology appointment in my 20's, I was told that it was a watch and wait disease and that many PKDers lived to be 70 with out any issues. I didn't really take the disease seriously. I was about 31 when I finally decided it was in my best interest to start seeing a neurologist on a regular basis to keep an eye on my kidney health. I LOVED my doctor, he was kind and patient and really listened to me. He would tell me to protect my kidneys to prevent the large cyst from rupturing. I quit drinking coffee, started to eat healthy, and drank more water (my arch nemesis) and exercise regularly. I was doing really well until a decline in my health... and nothing to do with my kidney's. I had anemia, with low white blood cells. I started regular iron IV's for a month and there were no changes. My "lady times" (sorry guys) have always been on the heavy side to put it lightly... :shock: I finally had an ablation with a tubal. My blood levels went back to normal and I have been living free of those pesky "lady times" permanently!

I made my usual appointment with my neurologist a year ago, sadly my happy go lucky look at the good side, PKDers can live till 70 with no problems amazing doctor had left the practice and a new doctor had taken his place. My new doctor has a different take on PKD, she sat down with me and told me that I have a few years before I should start to see a decline in kidney function. To monitor my BP, as that is the first sign of a decline in kidney function. She drew me a picture too, a long straight line representing my kidney's maintaining (skipping along, we're great), then (BAM!) a sharp angled line down showing a decline that would lead to dialysis and finally transplant with in 3-4 years! Wait, what!? Six months ago I had until I was 70, now I have 6-8 years before I'll need a transplant!? I REALLY wanted my old doctor back, but I couldn't get upset with her, she seems to have a face the facts kind of attitude. I decided at that moment that I was done, I wasn't going back. I would monitor my BP and make an appointment if and when it started to raise. I was just going to live my life, who needs the stress of impending doom every 6 months being scared that this could be it, maybe the time has come... Nope! Not me,
At the present I have kidney pain when I am not properly hydrating, or getting adequate rest. Other than that, I am 36 with no decline in kidney function, normal 120/80 or lower blood pressure, and no protein in my urine. I feel lucky that I know in advance, but also still feel as though I am a ticking time bomb just waiting to wake up one morning to failing kidneys. I recently started researching dialysis, kidney transplant, immune suppressing therapy after transplant, looking into my health care and what they do and don't cover. I got Aflac though work and have Critical Illness added insurance, I feel like at least if it happens I have my ducks in a row financially.. I really wanted to know what I am facing so that I could prepare myself for what I am going to go through. When I couldn't take anymore, as the information is daunting to say the least, I couldn't take reading anymore about it. I don't want to do any of this. I am not ready to accept my fate, so I had to stop researching the future and started focusing on researching how I could change it through healthy eating habits and a more holistic approach. One thing I have found very interesting is the Alkaline Diet for PKDers.




There she has a list of several studies, one I found particularly interesting was the Tanner Rat study:



I am seriously considering a major change in lifestyle, I currently am still in love with coffee, my diet is a "what can Mommy quickly make, please everyone, not good for you" foods, and I can't drink enough water to save my life (oh the irony). I am hoping to slowly eliminate all acid forming foods.... Emphasis on SLOWLY. I called my neurologist and she said that she doesn't see anything wrong with me changing my diet to alkaline. I am really trying to convince myself, this means no meat, hardly dairy, and not many grains. A vegan diet... It is a lot to give up.... but if it prolongs my kidney health it would be worth it! The idea is to give your kidney's a rest, the less they have to work to maintain alkalinity, the better. I don't know, I am just NOT looking forward to what I am facing in the future. I just want to know if anyone has been able to remain dedicated and seen and difference? Does anyone else out there have any other info on how it has helped them or the lather, how it has worsened their health or had no affect?

Posts: 1
Joined: Mon Jan 11, 2016 1:53 pm

Re: My story and a question, Alkaline Diet?

Postby Kavas » Mon Jan 11, 2016 2:57 pm

Hi Hope,

As someone who was just diagnosed with PKD last month, I have been making the rounds online to try and find anything that I can do to slow the decline of my kidney function. I came across the Alkaline Diet and have also been debating just how far down the rabbit hole I might want to go in respect to modifying my own diet. Unfortunately, I think the core issue here is that the benefit was only demonstrated in an animal model (rats). There have not been any clinical trials on humans. As far as I can ascertain, the merits of this diet in humans are largely based on the anecdotal experience of one individual, who maintains the pkddite website. I don't think it can hurt, as it emphasizes eating primarily fruits and veggies with some nuts and grains. And I certainly get where you're coming from, as with most PKD patients I would put up with just about anything to avoid the grim prospect of ESRD.

For myself, I have switched to a mostly low sodium vegan diet (not necessarily alkaline), with allowances made for the occasional bit of dairy or meat. That said, I really don't know it will truly help at all with the actually progression of cyst growth. I approach it more from the perspective of just trying to be healthy in general, especially in regards to my heart. As far as actually impacting cyst expansion, water consumption and elimination of caffeine seem to be the only things with some demonstrated merit.

At 36 with excellent kidney function and low blood pressure, it sounds like you have a great prognosis. I think your doctors are both right in their own way, as the presentation of symptoms and onset of loss of kidney function varies wildly between patients, even in the same family. I'm 34 with 45% function remaining, while my Mom (whom I inherited the gene from) still has excellent kidney function and low BP at 64 (and she consumes a lot of caffeine, go figure). The diagnosis was quite a shock in my case, as we thought my Mom never inherited it.

Posts: 19
Joined: Mon Oct 13, 2014 6:31 pm
Location: Ottawa, Ontario

Re: My story and a question, Alkaline Diet?

Postby largedaryl » Fri Mar 25, 2016 7:05 am

Ahh... all of above makes sense. The first friendly neph was not doing you any good by providing the most optimistic data from the PKD2 families that can live into their 70s trouble free.... unless of course it is known that you have PDK2.

I am 41, ADPKD1 ( I assume 1 based on family history all failing < 60yrs ) eGFR steady @ 85 for the past 13 years that I have of blood data... kidneys in the 17/18 cm size range. On BP pills (ARBs) for about 4 years now..work great (110/78) I have been reading of best practices for years as it sound you folks have. For me, flank pain started at age 38... mild but there on/off. I drink 5+ litres of water every day.. have for over a decade, it is a natural desire for some reason.

I started on the alkaline biased diet over the past 6 months... simple things like lemon juice in my water every day, and pumpkin seeds as snacks, 5 salads as meals a week, anything I can find high in alkaline to replace a less desirable option, less red meat, etc. One coffee a day.. I take the moderation approach wrt caffeine. IMO everyone should do this, not just PKDers, simply from a general health point of view that it can't hurt to eat better.

The primary impact has been reduced flank pain over the past 6 months... the kicker though is that I also started Jinarc (tolvaptan) Dec 1, so I do not know what change I can attribute the pain reduction to? Either way, I will take the improvement and run with it. My blood data, monthly, remains unchanged.

The impact of all of this.. I will never know... if cysts grow 2% vs 3% due to diet changes/Jinarc, we don't have that level of precision to measure, so all we can do it what we feel is correct and best for us after reviewing the data/studies available.

Good luck to all.. and feel free to share any learnings. There is so much variance with PDK.. it is certainly not one size fits all.

Posts: 3
Joined: Thu Jul 23, 2015 8:55 am

Re: My story and a question, Alkaline Diet?

Postby viperron » Tue Apr 12, 2016 5:40 pm

You might what to read about using organic apple cider vinegar and baking soda to keep your urine alkaline...google alkalinity by Ted from Bangkok

alkalife

Re: benefits of using alkaline water on health, Alkaline Die

Postby alkalife » Tue Aug 07, 2018 1:25 am

benefits of using alkaline water on health

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