Advice for someone with possible CKD

[Julesboz]

Hi all, I'm wondering if I can get a bit of advice.

I'm a 51 year old female. I don't drink or smoke and eat healthily. I have a low/average BMI and exercise regularly. I don't have diabetes or any other long term problems, except mild asthma.

About 5 years ago my kidney function dropped (GFR around 49) for no apparent reason. It was found during routine blood tests and, although I had investigations, it was concluded that I was fine and no further action was taken. Eventually my GFR went back up to 60 with normal creatinine levels and has stayed there.

However in the last year I've been feeling rubbish. Very tired all the time, cold, loss of libido, mouth ulcers, aches and pains, dry nails/skin/hair. Various blood tests showed ferritin deficiency, iron deficiency anaemia, folic acid deficiency and low range B12. My thyroid function was not brilliant but still within range. My GFR was still 60 but creatinine was at the top of acceptable.

The doctor sent to me to a gastroenterologist to check for bowel cancer but he deemed I was very low risk. I also convinced the doc to do thyroid investigations but nothing came of that.

Since then I've been taking iron, folic acid and b12 supplements and have been feeling loads better, except the aches and pains especially in my hands. So she sent me for X-rays and further blood tests to see how I was doing.

The anaemia has gone but I got the bloods today and my GFR is now 53 and my creatinine is 97 (range 45-84). I now have swollen feet in the heat and am going to the loo at lot less often. The doc has requested to see me and has written CKD? On my test results. Unfortunately I can't see her for another month as she's fully booked and am just wondering what advice anyone can give me i.e.

- should I insist on seeing someone earlier?

- is there anything I can do to help myself in the meantime?

- what should I expect or insist on that the doctor does?

Thanks so much in advance!!

[Hidden]

Hi there, I was diagnosed in 2011 with Stage 3 CKD. My experience was very similar to yours....anemia, tiredness, muscle aches & pains, low thyroid with my numbers going from GFR 60 to GFR 42. I'm typically a very active person (regularly exercise 90 minutes to 2-hours per day with bike riding, pickle ball, hiking and or swimming). I am 5'6", weigh 101 pounds, do not have diabetes or high blood pressure. I'm happily retired and newly married!

I took iron supplements to get over the anemia, met with a good nutritionist, and began taking a great probiotic with every meal (Renadyl - which I order through Amazon and was recommended by a kidney doctor), as well as 800 mg of magnesium oxide (again, recommended by my doctor).

I have to say I've never felt better! I've got my energy back and am doing all the activities I desire with no tiredness or muscle aches & pains.

I recently changed doctors (due to a move). My new primary care doctor put it this way: As we age our bodies start to change. Some people end up with bad knees or hips, others with failing eyesight, etc. For whatever reason, my body decided to have kidneys that are aging faster than I would like. BUT....I could remain in stage 3 or even early stage 4 for a very long time. So he suggested I relax and don't work about it. There is nothing I can do to change my disease status, other than continue with my probiotic & magnesium oxide and eat well. And, he reminded me that stage 3 doesn't mean I'll end up on dialysis or need a kidney transplant.

So....I'm enjoying life without worry and feeling great. I hope this was helpful to you.

[Julesboz in reply to Hidden]

Oh thanks so much for your response! That is really good and reassuring to hear

[orangecity41 NKF Ambassador in reply to Hidden]

I am 76 and diagnosed with CKD over a year ago. My experience and symptoms same as yours. I also changed Doctors due to a move. My previous Doctor thought all symptoms from arthritis and prescribed nsaid. Glad changed Doctors. I too am on diet and exercise regimen. Agree enjoy life without worrying about the disease, and remain proactive for health.

Thanks for sharing

[orangecity41 NKF Ambassador in reply to Hidden]

Hi Pegreiter

Thanks for your great reply. My story being similar gives me great encouragement. I too am physically active and at 76, plan to keep doing so, although routine modified.

With being diligent we can stay away from dialysis for the long term.

[Patient-Empowerment NKF Peer Mentor NKF Ambassador]

It's always best to use your voice and advocate for yourself. You concerns should be heard. Waiting a month to get in may cause you to just get more anxious. Your doc might be able to give you peace of mind so you don't have BP issues too. Perhaps they have a PA that could see you sooner, or even a dietician?

Good news is that you GFR improved though your other labs and symptoms should be addressed.

[Julesboz in reply to Patient-Empowerment]

Hi there, thanks for the response.

I did actually manage to see my doctor earlier than expected. She confirmed I do have CKD but she was very keen to stress its very mild and gave me a leaflet to read. My blood pressure is and always has been low (currently 110/60). She has taken a urine sample to check for protein and is contacting the NHS dietitians to see if they can help me. She said otherwise there's no action that needs to be taken, just come back in a year and have another set of blood tests to monitor my progress.

I'm surprised that there are no further investigations especially as I don't have any of the risk factors involved in CKD, but I guess that I should be reassured that she's not worried about me.

I've done a lot of reading in the past few days and I don't feel too concerned, it looks like the vast majority of people manage well with CKD, and most people don't progress to stage 5.

[BarbnKY in reply to Patient-Empowerment]

GFR can improve?

[Julesboz in reply to BarbnKY]

In my experience yes. 5 years ago my GFR dropped over a 3 month period from mid 60s to mid 30s. All my other blood levels were fine though. I had investigations and no cause was ever found and the GFR eventually went back up to low 60s again and has stayed there until recently. I was told it was a weird occurrence and nothing to worry about, so I forgot about it. Now 5 years later I have been diagnosed with CKD so I assume that was an early warning sign that something was not right.

[Catmommy in reply to BarbnKY]

Yes. When I started the renal diet, my gfr was 47. Now it is 52.

[orangecity41 NKF Ambassador]

I am 75 and diagnosed with CKD at level 3b over a year ago. Reason is organic. I am on rigid pre-dialysis diet and my figures have improved to 60 also, however my symptoms have increased, such as feeling cold, fatigue, tingling etc, Now diagnosed with peripheral neuropathy, a symptom of CKD level 4. I hope for long term can put off dialysis. Being on Medicare I cannot get referral to nephrologist until stage 4, so much have to do for myself and rely on research and info from friends who are on dialysis. We can only be proactive for ourselves.. Hope you too are able to put off dialysis as long as possible.

[Julesboz in reply to orangecity41]

Thanks very much, yes I suspect a good diet can help improve things a lot! I am actually scheduled to see a nutritionist on Monday (paid for privately not on the NHS), to see if she can give me advice seeing as I'm already lactose and soya intolerant and had been thinking about giving up gluten as it's known to be inflammatory. Now with kidney problems in the mix, I need professional help to work out what's best to eat and avoid to preserve kidney function for as long as possible. I'm also considering buying rendadryl which pegreiter recommended earlier in this thread and am going to talk to the nutritionist about.

Good luck on your journey too!

[Catmommy in reply to orangecity41]

I have Medicare and was referred to a nephrologist and then to a renal dietitian. Maybe because I pay for a supplemental insurance???

[Julesboz in reply to Catmommy]

I'm relying on the NHS in the uk. I saw my doctor for a follow up yesterday and she has now referred me for a kidney scan and I do have an apt with a renal dietician in a couple of weeks now. Cross fingers they will be able to help me!

[orangecity41 NKF Ambassador in reply to Catmommy]

Thanks, I will check into it as I have a medicare part B supplement. I had checked with Medicare and said only when reach stage 4, will get referral and is a new rule. I will check with my insurance carrier too.

[Catmommy in reply to orangecity41]

What does organic mean as a cause of ckd?

[Julesboz in reply to Catmommy]

Catmommy, sorry no idea. I'm new to this and haven't heard that expression before. IF I had to guess I'd say it means they don't know the cause!

[orangecity41 NKF Ambassador]

Thanks, great we can encourage one another on this CKD journey.

[Ladybug_05]

Hello! I currently live with CKD (stage 4). I've lived with my entire life and know those symptoms all too well...my mom would mistake my fatigue for teenage laziness and it wasn't until I was tested that we found my b12 deficiency and iron deficiency. I currently take all the same vitamins you do as well! I would insist on being seen by a nephrologist (if you haven't already) and a follow up ultrasound. In the mean time, make sure that you are putting up your feet when they swell so that the swelling will go down. My doctor instructed me to do it every night before I go to bed as a preventative measure; it also helps with any joint problems that haven't been diagnosed. Also look up renal friendly recipes on Devita! A lot of renal friendly recipes are clean eating and keeping protein portions limited will help as well.

On the bright side you have caught this earlier rather than later. Make sure to keep exercising and starting to be mindful of phosphorus (it's in everything so portions are a must!), potassium and sodium in foods. It's good that you are being proactive, but also don't be surprised if you develop new symptoms as your kidneys decline.

I only have 1 kidney and I developed gout at 13 years old and fibromyalgia at 15 (I wasn't diagnosed until last year) and I'm currently 20 years old getting ready for transplant. I was told my kidney would fail at 14 and it's still holding out at 18%! You never know what your kidneys are capable of; they can continue to go up and down for many years and taking various medications can help as well. I know I'm probably repeating what others have said but I hope this was helpful in some way to you!

[Julesboz in reply to Ladybug_05]

Oh that's very helpful thanks. I've been feeling too young to get this problem and you've put things in perspective for me. I have been referred for an ultrasound scan now and am going next Friday. I am also being careful with what I eat, keeping an eye on phosphates in particular.

Good luck with your transplant! I hope things work out well for you!

[Ladybug_05 in reply to Julesboz]

Thank you! I wish you well on your journey!

[aztecapride775 in reply to Ladybug_05]

Hi, when you where diagnosed with CKD you mentioned some deficiencies, where your creatinine and gfr normal?

[Ladybug_05 in reply to aztecapride775]

I was diagnosed as an infant, and at the time my gfr and creatine were normal, but my deficiencies didn't come up until many years later after my CKD progressed into stage 3. Now that I've been transplanted, we're working on my vitamin deficiencies, which have improved now that my diet restrictions have been lifted.

[Hidden]

Gee, I read your post and thought "Did I write this?" Your situation sounds very similar to mine. I'm 60 years young, am 5-6", weigh 101 pounds, am extremely physically active and was diagnosed with CKD 4 years ago. I'm in late Stage 3. I was anemic, no energy, low thyroid, cold all the time, dry skin and hair, itchy skin, and muscle & nerve pain.

My doctor got me on an iron supplement and B-12 which fixed the anemia. My doctor also told me to take 800 - 1200 mg a day of Magnesium Oxide. This totally fixed the muscle and nerve pain. I use Cetaphil lotion after my shower and dry, itchy skin is much better.

I am not diabetic, do not have high blood pressure, or any other complications. I eat unbelievably healthy (no white flour, no sugar or sweeteners, no soft drinks) and enjoy a glass of wine most evenings before dinner.

I recently changed doctors. Here's what he told me. "You are doing everything you possibly can to be healthy and live the life you want. Stop thinking about CKD. You can't do anything about it; you might stay in your current stage for years, so just go live your life with all the gusto you give it." Wow! What a nice thing to hear.

So......I don't think about my disease any longer. I live each day doing the activities I want and will continue to do so until "my normal" changes to something else which will then be "normal."

I hope this helps.

[Julesboz in reply to Hidden]

Thanks for this. I wrote the post a month ago when I was still in a bit of shock. I've had a similar conversation with my doctor since and am eating healthily, exercising and doing fine. I've come to the same conclusion too and am feeling much happier now. Thanks again for your positive words

[taivin98]

Figure out how much water you should be drinking and drink it religiously every day. Try not to worry. I finally did change urologist but to a female one.

Watch your protein intake; hurt kidneys don't like too much protein and go for a more plant based diet (think smaller molecules). Having said that watch out for the high potassium foods. A renal dietary consult would help. Read up on all this stuff. There's tons of info out there but be careful of the source.

These days specialty docs are booked long in advance so do some yoga. Look up kidney friendly exercise and meditation does wonders.

[Julesboz in reply to taivin98]

Hi taivin98, thanks for the advice. I am definitely drinking more water and, although I don't do yoga, I do swim and walk lots and am good at relaxing I posted this question several months ago and since then I've been diagnosed with stage 3 CKD but I've had a kidney scan which didn't show anything and have seen a renal dietician who was very helpful, she said I didn't need to restrict protein as my blood tests were ok in that respect. I have multiple food intolerances and have recently given up gluten as that was been causing me problems (I'm now dairy, gluten, soya and alcohol intolerant). My personal theory is that my food intolerances have contributed to my kidney problems (I've researched and there is a link but I haven't discussed this with my doctor yet) and I'm hoping that at my next blood test in October, my GFR will have improved now that I've cut out gluten. It will be interesting to see how it goes!

[itzmich]

First don't worry you are ok. If you have ckd you are in the early stages. Yes you can change your diet. It has helped me feel better. Low salt and protein... plenty of water, no OTC pain meds. Watch caffine and dairy consumptions. You can find lots of info on Davita website. Hope you feel better.

[sharonlyn]

i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 points...it is similiar to vegan but you cut out sugar...oil...salt...potatoes...tomatoes...no processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with diet...it is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or better...now this is my experience with this way of eating...everyone is different but i found out i ckd not because my doctor told me but that i looked at my labs...if you are really serious in having better kidney function at least check out this group...

[Julesboz in reply to sharonlyn]

Thanks for this, I posted this 2 years ago and things have changed a bit since then. I’ve changed my diet, increased my knowledge and increased my GFR from 53 to 59 and I feel a whole lot better