Doing the happy dance - BUT ..... - Early CKD Support

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Doing the happy dance - BUT .....

Hul1
Hul1
10 Replies

So last October after a routine blood test I was told I had CKD. ( 51 eGFR) I never heard of this disease before - in fact, I was shocked as I always thought of myself quite healthy - I eat what I would consider mostly a healthy diet and worked out 5 days a week. I was still overweight ( have been most of my life) I was 196 lb age 58. BP 166/85 So like most of us - went into panic mode - signed up for lots of forums and groups on CKD to learn all about it.. Now- interestingly- just before I was diagnosed - I started to get a salty taste in my mouth - when I drank anything other than water it tasted like someone had put salt in it. My GP prescribed me 3 different medications for Thrush- but it still would not shift. Then all of a sudden it went- only to leave me with a sensation like I had burnt my mouth. After having this for a while I researched it and my own conclusion it must be BMS (Burning mouth syndrome. ) I also asked my Doctor what was my eGFR previously- he told me 10 years ago it was 61- so I had stage 2 CKD then - but in the UK you don't get told you have CKD until it falls below 60 - unless of course, you are a very young adult or child.

In the meantime, my doctor told me not to worry about my CKD as it was nothing to worry about - just get on with life

I bought Lee Hull's book, I changed my diet, ( never followed it religiously - basically, just cut out red meat and lots of processed foods) . So anyhow - I - like most of us when we first get told we have a Chronic condition - I did lots and lots of reading the posts on the forums - I actually became obsessed. I bought a BP monitor - kept on taking my BP ( which incidentally confirmed I have white coat syndrome) as the reading came down to around 138/80 - more on that later.

I did also get prescribed VIT D a few months later as I was low on that.

So ...as I said I changed my diet _ I've always eaten lots of veg anyhow - so that stayed- I never was a great red meat eater - probably once a week - but cut that out completely (I did very occasionally eat it if I had a Burrito or lasagne ) I also cut out all processed meat . I still eat chicken and sea bass maybe once a week, I also do like my bagels and cakes and biscuits - I did cut down but I do still have them. I also have the occasional egg and cheeses. I also still eat chocolate and Crisp (chips) - Wish I could give them up!

In the UK we have a meat substitute called Quorn - and I have to say some of the products you get made with this - it would be hard to tell the difference between chicken/ beef - it is really good. Also, there are lots of choices of Veggie burgers and the likes - so I never really missed out on anything I felt. I was guilty of having a whisky at least 5 nights a week - and probably around 4 doubles a night, so I reduced my alcohol intake massively. I may once a week have a large glass of wine, and maybe every 3 weeks have a double whisky.

As for supplements, I started (and still do ) to take Tumeric capsules, Cod Liver and ACV.

I did for a few weeks take 1/4 teaspoon of baking soda a day - but stopped - basically because I forgot to take it and I am unsure if this is any good for you with mild CKD.

so just a few weeks ago I was re-tested for my VIT D - My Gp told me VIT D was great and he took me off the capsules as he felt I no longer need it as my readings were very impressive and was over the normal. I did find this strange as far as I was concerned maybe just a lower dose - one every other day would have been a more appropriate action.

So around two months ago, I realized this condition was actually doing more harm to my mental health _ It was consuming me. I decided to Unfollow all of the Facebook groups about CKD ( and BMS) and basically just stay with Healthunlocked. I have to be honest too - personally and this is just me - so please I hope I don't offend anyone - but I think some people are labelled with CKD and they really shouldn't be - I included. There are those who obviously have the condition - but you are labelled with it when your eGFR reading falls below a certain number. I am sure if there was a similar test for Chronic - Heart/Liver/Lung - I would also be labelled with it.

Anyhow - unfortunately, I have put 12lbs on ! -( I blame the Chocolate and crisp!)

So my latest readings

Well, my eGFR went up to 64!! it's over 10 years since it was that - so officially I am now CKD stage 2

Blood pressure - the highest its ever been while taking readings my self was initially 144/77 - that was only once in the last 12 months. The last 10 average readings are Max 136/84, Min 115/76, Average 127/80.

In fact, my lowest reading was after I decided I didn't care any more how high my BP was - so basically I was totally relaxed.

Now this is where it gets interesting - while having my blood done- I was tested for Zinc levels - as low zinc levels can attribute to BMS. My Zinc levels came back low! I was prescribed zinc meds. I looked up what the best food is for Zinc levels - and what I found was- RED MEAT! also shellfish, legumes, dairy - basically nearly all the food I either cut out or give up......Also, I have recently found out that low levels of VIT D can attribute to BMS ..and guess what foods are great for VIT D Beef- Liver- Dairy.....

Now - just to complicate matters further - My daughter who is 35 has just had her blood work done - she showed me her eGFR results. Now my daughter who is obese and does not eat a good healthy diet and hasn't for many years - I have to say I was totally surprised -

In 2017 it was eGFR 77, in 2018 - eGFR 82 in 2019 eGFR 89 .

So ..for now...I am going to start eating a little more red meat and dairy - Obviously I am lacking in vital vitamins and these are the best food source for the vitamin and mineral I am lacking. I thought I would just share this with you all - as far as I can understand- one size does not fit all. ....

10 Replies
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MrsP70

May I ask if you take bp meds?

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Hul1

No other meds at all .

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Bassetmommer

Hi Hul,

What you demonstrated is the bodies ability to normalize itself. I am against any radical diet for anyone if is not medical sound and required. Those that say all CKD patients must follow the same diet is incorrect and misleading. Diets that are restrictive are not a normal way to live and hence why they fail. People who crash diet for weight loss find that the weight loss will reverse itself as the body no longer can handle a regular 2000 calorie diet. So they keep starving themselves and lowering their metabolic rate. That is why the diet industry is so lucrative.

What you have demonstrated was sound judgement. You educated yourself and went through trial and error to see what works for you. And that is perfect lesson for us all.

You also discovered the body's way of saying if you rob me of nutrients, I will let you know. The body is a very smart machine.

When I was first diagnosed I was so restrictive. I checked everything I ate out for content. Not a bad thing because I am now a walking encyclopedia on nutritional value of many foods. But now I know what is good and not. I do enjoy things ONCE in a while that may not be the best thing for me.....like birthday cake which is my favorite food. My weight has maintained although not what any medical doctor would say was the "right" weight. But it is the same weight I had for most of my adult life before all the problems. It is my set point. I have gone below that weight in the past and come back pretty fast to it.

The thing is the changes I made and have sustained are more important. I am more relaxed about my diet but I also am sort of autopilot now and eat pretty much the same thing. Going out to eat is challenging but the social reward out weighs the struggle.

As far as your daughter goes, you are stereotyping her like many medical people do. If someone is fat, they are automatically .... diabetic, have heart disease, or other disease. Up until my late 40's, I was in perfect health, much to the chagrin of the doctors I saw. All they saw was the fat. I remember sitting in a doctors office long ago and he kept taking my glucose saying I had to have diabetes. It was under 5 and had been for my life. It was do to medications that I became diabetic and now I am back down to close to where I was.

Keep us in the loop with your results. I find it fascinating how people live well with CKD. Congratulations to you.

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Hul1
Hul1
in reply to Bassetmommer

Thanks Bassetmommer - Ill keep this post updated as I find anything else - yes I do agree I think sometimes we tend to make generalisations about people - on what the eat/do not eat and how they look.

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Marvin8

Pardon me, but what is BMS? Are you referring to metabolic syndrome?

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Hul1
Hul1
in reply to Marvin8

BMS- Burning Mouth Syndrome - its something that can just come out of the blue with no explanation - nothing to do with CKD - It can also be caused by lack of Vitamins/Minerals . Can last from several months - or a lifetime - so little is known about it.

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itzmich

I'm questioning your blood pressure and why you are not on meds for that. Its higher than it should be. I would still watch what I'm eating. The non meat substitute is highly processed. Eat more vitamin rich veggies. Cut back on the salt. You do have a decline in kidney function nothing to worry about but your diet is important. Find something that works for you.

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Hul1
Hul1
in reply to itzmich

To be honest - I do not think (nor does my doctor think) an average BP of 127/80 is anything to worry about - so does not need meds. as for diet- believe me - most of my diet consists of Veg, - I am not a great fruit eater I confess - I must try and get some more fruit in my diet. Salt- never found I need it on my food to be honest and the food I do eat is very low on salt. I think from the moment you are born - your organs start to decline - I think as many others do, the way CKD is diagnosed is not the best way at all- even Doctors agree. In my own experience, I would have to say - that given the diagnoses I had CKD , and then researching something I knew nothing about - looking at what it could lead to - Dialysis - Kidney Transplant -Death. I have to say the stress and the anxiety caused - was more detrimental to my health than CKD itself. Don't get me wrong - it was a kinda wake up call - made me rethink about what crap I'm putting into my body ( far to much alcohol for one) But as it stands right at this moment I am a lot happier - yes according to the rules - I have CKD stage 2 - but 11 years ago I had CKD stage 2 - and probably since the age of 20 had CKD - I accept as I get older all my organs will decline each year - but that is something that happens to all of us .

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MarBea

Congratulations on reversing your CKD back to Stage 2! I agree with everything you wrote. I was diagnosed in September when my GFR went down to the 50s, and I had all the panic and the emotions that you had for a few weeks. I did change my dietary habits, and now I drink 8 to 10 glasses of water daily. The good news was after my sonogram, I found out I had kidney stones, and I had ZERO idea I had them. The best thing that came from my diagnosis was the AWARENESS that I had to change my lifestyle, drink more water and monitor my EFGR, and kidney stones. I also had to step back a bit from the endless reading and researching I was doing. I still read, but also about other health factors. I have learned that many people with kidney disease will have more issues with their heart, than their kidneys! Our bodies are a system, and our bodies all work together. If you are having an issue in one area, you almost always are having issues in several areas!

I met a Urologist last week, who only spent less than 20 minutes with me, and put me more at ease, than I have been since I found out about CKD. My eFGR is back up to around 68, which is was 3 months ago. She told me my that eFGR can normally fluctuate, and it can quickly drop by even 30 points when you are ill. I have been vegetarian/vegan for many years, and I have the same issues with Zinc. I am considering eating organic cheese for health reasons, and I am going to ask my physician about taking a low dose Zinc supplement. I asked her about taking RenalD on my last visit, she wants me to hold off until we test my eFGR to see if it appears to be stable. It appears that I might fluctuate between Stage 2 and Stage 3 A, I am curious is my dietary habits can get me to a higher level of Stage 2, because that is where I was 2 years ago. My doctor thinks it is possible if I continue doing what I am doing. I dropped 8 pounds this month, because of the water and my new love of cauliflower and carrots, and I have not gone to the gym, so I am happy. As I said earlier, our bodies are a SYSTEM, and we have to look at a variety of factors. Each one of us has different medical issues, challenges and restrictions, so often this is not a one size fit all situation. I had Stage 1 Thyroid Cancer 5 years ago, and had a Thyroidectomy so lately I am more concerned about my Thyroid levels. I also have been borderline Pre-Diabetic for 15 years, so I am concerned about my Glucose levels and A1C.

I also have borderline HPB which is controlled by medication, and has been super low lately at around 110/65. I am hoping if I continue my dietary habits I can lower my A1C well below 6, and it has not been lower than 6 in 20 years. My weight loss has more to do with lowering A1C and Glucose than my Kidneys! Last point is, we all have a variety of health challenges and we can learn what works for each other and realize, that we have to always consult with our physician and look at other health issues. I personally think the reason I am doing so well, is because of my Acupuncture and focusing on Spirituality. I am in the best place MENTALLY, I have been in over 20 years. I believe in the mind body connection and almost every disease and medical condition is exasperated by stress. Clear mind and low stress does wonders for the body.

Namaste

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Hul1
Hul1
in reply to MarBea

Great read - thanks for sharing - Yes definitely there is a mind body connection - and like you said if your all stressed up - your body feels it too. I forgot to add too - like you I now drink lots of water! I tend to drink around 8- 10 pints a day plus tea and coffee .

Good luck with your journey!

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