A Newbie

[Kernewek]

Hi everybody out there!

I will start by saying I'm based in England, and I don't have a specialist, only a GP with no input from them. I have only just found out I have CKD Stage 3a Moderate Kidney Disease - and only found that out because have now been given access to see my blood test results on line! I should add I do have kidney function tests yearly, (bar 2 during Covid) as during a scan 5 years ago for diverticulitis, scarring was found in my kidneys, and the right one was smaller than the left, but at no time was any diagnosis made, more a, "we will just keep an eye on them". I had no idea what the CKD sentence meant, so have done some research and feel confident I understand it now. After a quick phone call I did find out I was stage 2 last year (even though when checking my results originally was told all OK). It also states on the results no further action needed, and to continue with the yearly tests.

Now for the assumptions as to why they put the last sentence:

My electrolytes are all ok. My blood pressure is good. My bone density, when tested prior to receiving drugs for breast cancer was 12, which is apparently good. I swim 3 times a week, and walk frequently.

To a certain extent, the diagnosis has cleared up some niggly things that were happening - restless legs causing lack of sleep, itching on my legs, and an oedema patch at the front of my leg just above my already slightly puffy ankles.

My goal is to remain at stage 3a and not progress, but obviously, at the end of the day, it will be what it will be - but I will be doing everything in my power to try to halt it - which is where you good people come in - any advice you can give will be gratefully received!

As too the cause of my kidney disease - I believe my past health issues probably have had a part in it - but I don't look back, bit of a waste of energy - ever forward is my moto!

Thank you for taking the time to read my rambling, enjoy your day.

[orangecity41 NKF Ambassador]

Welome to the forum where you will find support and shared information. I too was diagnosed at level 3, and previous Doctors did not diagnose me. I am on Medicare in US, which is siimilar to the UK medical program. I am 81 years old and diagnosed 5 years ago and put on appropriate CKD diet. Keep us posted on how it is going.

[Kernewek in reply to orangecity41]

Hello orangecity41! Thank you for coming back so quickly. I am spending a lot of time at present reading about diet and the best way to approach reducing items that may be harmful to my kidneys, but still ensuring I get the balance right to maintain fitness. I am overweight, quite a big no-no, so am addressing that also. Being on this forum just might be the motivation I need to keep at it, cause I do like my food! Once again, thank you for replying, and I will keep you up to date with progress.

[orangecity41 NKF Ambassador in reply to Kernewek]

May be best to see a dietitian. That would help you to make sure getting right nutrients. My prescribed CKD diet is based on bloodwork. Eliminating or reducing too much of some foods might cause problems for you?

[Kernewek in reply to orangecity41]

Hmmm, had thought of that, but the NHS is under such strain at the moment, the waiting lists to see Drs, dieticians, physios etc is very long. I have been waiting 6 months to see a physio for "swimmers shoulder", and suspect it will easily be another 6 months! I will contact my surgery on Monday though, and get my name on the dietician list. I am not in a position to pay privately. Meant to ask, have you stade on stage 3 since your diagnosis?

[Ziggydoodah in reply to Kernewek]

Hi KernewekI live in Scotland, so i have experienced the NHS protocol for treating kidney disease. Where i am, you don't see a dietician until you are at Stage 4/5. However with hindsight, see that as a blessing. I was actually shocked at what my dietician was recommending...a lot of processed meats, in particular ham 🙄 I was trying to follow a plant based diet but this was definitely not encouraged by my renal team. However it was this diet I felt great on and seen some improvement in my GFR. When I was referred to my renal consultant I was at 44% ..again I had not be told by my GP that there was an issue. I was immediately put on high dose steroids. The next 9 months were awful and had no affect on my kidney function. If I had my time again I would do everything possible to lose the weight completely change your diet and adopt a healthier lifestyle. I take it u have access to Patientviw. Keep a check on your results and research the numbers and see what u can do to improve them. I really wish i had looked into alternatives before accepting all the medications my consultant prescribed. You need to reduce your inflammation and reduce it now. I was in your situation 7 years ago, I am now starting dialysis. Wishing you all the best.

[Kernewek in reply to Ziggydoodah]

Good morning Ziggydoodah - 1st up, love the name! I'm also shocked by the dieticians advise - from what I've read so far, processed foods are up there as being one of the worst things for CKD! You have certainly been through the mill.

I've literally only just been given access to Patientview - so could only see this year's results - hence the call to find out my previous test results. Although now, I think I will ask for the ones covering all results since I started having blood tests for kidney.

I have a feeling, drs down here will follow the same protocol as Scotland, and not send me on to see anyone till I move further up the ladder - something I am going to try really hard not to do! But of course, there isn't always a choice in these things, so I believe in getting as much info as possible to give me the best chance to, if not halt the progress of CKD, to at least hold it at bay.

I have taken on board your comment on weight and a healthy life style - I need to lose at least 1 stone, preferably 1 1/2, and increase my exercise.

I think reading another person's passage through this disease, is the motivation I need, and I thank you for being honest in the way you have written about it.

I am truly sorry you are starting dialysis, please keep in touch, and let me know how your doing.

[Ziggydoodah in reply to Kernewek]

Haha thanks! Yeah you are at the stage, where u wont "cure" kidney disease but u can improve your kidney function. Whatever your doctor tells you to do, research it and research it again! Like I said i blindly followed my consultants advice without questioning anything. I will tell you straight my experience....I left my consultants office with a bag full of medications. I was on a high dose of steroids and BP medication. I put on 3 stone with the steroids. I was wired to the moon. Had to be put on sleeping pills for a week as I hadn't slept for 3 days. My BP medication caused terrible joint pain. My hair thinned so badly I was embarrassed to leave the house. I have been told I was hell to be around. Im usually a laid back person but everything irritated me. After I came off the steroids I lost most of the weight but I felt my health was never the same again. I actually requested it be put on my notes that I only wanted steroids prescribed if I received a transplant or my life depended on it. Wishing you all the best and message me if u need any further info. Ps this was my experience and I dont want to scare you. However I wish I had someone tell it to me straight and encourage me to look at alternatives.

[Kernewek in reply to Ziggydoodah]

I'm exceptionally grateful that you have shared your experience with me - this is what I need, a true wake up call, to galvanise me to sort the next stage of my life. I am so sorry you have had such a bad time - especially when it's caused by the people who should be helping you! Hair loss can be devastating - I was bald for 18 months due to genetic alopecia - I wore a wig for work but not at home. Touch everything, I only get the odd patch now.

I will let you know how I get on, and if you think of any other pearls of wisdom, or even just want to rant about the injustice of it all, I'm here!

[Ziggydoodah in reply to Kernewek]

I'm sorry to hear about your experience of hair loss. It is truly devastating. This is a great place to meet people who have experienced similar issues in life. I have found this site amazing, regarding the advice and experiences of others. You are obviously a warrior so keep fighting . I might be on dialysis but its not been as bad as I thought it would be. The worst part is accepting this is my "new normal" 🙄🙄. Yes keep in touch and keep me updated. Enjoy your weekend!!! X

[Kernewek in reply to Ziggydoodah]

Thank you, you too! X

[Sophiebun11 in reply to Ziggydoodah]

Ham....wow. Ham is terrible for many problems from CKD, to causing colon cancer. That dietician needs to go back to school and learn more about a renal diet.

Best wishes to you.

[S_dillow]

Sdillow here .I have been stage 3b since 2019.dietary changes and a bout with covid damaged my kidneys severely but I am holding steady

[Kernewek in reply to S_dillow]

Hello S_dillow. Thank you for responding to my post, and sharing your experience - it isn't always easy to be positive in the face of adversity, but I hope you have found some comfort from the community on this forum, as I hope I will. Wouldn't normally be talking at 12.30 in the morning, but as many a night these days, restless legs won't let me sleep!

[S_dillow]

Have that too, but usually around 4 am.annoying sometimes

[Kernewek in reply to S_dillow]

Have you ever tried medication to see it? It's not really a path I want to go down, but I'm getting so fed up with all the twitching!

[S_dillow]

No.i find that if I stretch my legs from the toes it seems to kick it faster .I'm on nearly twenty meds now I don't think I could handle another

[Kernewek in reply to S_dillow]

I can understand you not wishing to take more meds. Thank you for the tip, I will give it a go tonight

[pheebee]

Hi Kernewek, I'm in the UK and like you found out by accident around a year ago that I was CKD stage 3b with GFR of 43.I'm not diabetic or hypertensive.

G.P not interested and told me to 'just eat healthy'.

I spoke to a non renal dietician which was a waste of time.

I am planning to contact a private renal dietician when I'm feeling richer.

After some research and great advice from others on here I tweaked my diet to mainly plant based, low sodium, no processed foods etc. It's not perfect but my GFR was 50 last blood test.

[Kernewek in reply to pheebee]

Hi Pheebee, nice to hear from you. Well done on getting your GFR up to 50, apparently that's where mine is at present. I don't understand this "hand off" approach all Drs seem to have to stage 3 CKD, when most online sites are saying this is exactly when advice should be given. Although, having read the experience of others on this site regarding Drs input, I think I would much rather take advice from real people who have been through, or are going through it! I liken myself to a sponge, happy to soak up any advice anyone can give me!

Reading other people's experiences has also given me food for thought - the most important being, don't prevaricate, adjust my lifestyle now!

[pheebee]

Hi, yes I know it's ridiculous isn't it. Dr's don't learn much about nutrition when they train, so that's probably something to do with it. I also think that by doing more at stage 3 the huge wave of patients that would be generated might completely cripple the NHS. Lucky that there are sites like this.

[S_dillow]

My nephron really stepped up to the plate this time.we had a little.... discussion... about things and ever since then he's been proactive.

[Kernewek in reply to S_dillow]

I'm so glad your "discussion" had a positive outcome!

[Kernewek]

Hello Barbara, nice to meet you. Yes, there is probably something in that. The Dr who my results go to is the one who's list I'm on. In the past, when I've had issues, I have preferred to see one of the other drs as I don't like this particular drs attitude, and I don't feel a huge amount of sympathy. Don't get me wrong, I don't need someone to say "there there" or hold my hand, but would like to feel they want to help with my situation. Luckily for me, I found this forum, where in only a day I have met some lovely people! And I can't thank them enough for their input.

[Sophiebun11]

Hi,

Welcome to the forum. It's good you learned about your CDK at Stage 3A. I'm at Stage 4.

Even without seeing a renal dietician you can find tons of info on Plant-based Diets online which are best for CKD. Even a Neph will tell you that. My Neph has a huge poster on his wall of a plant-based diet chart and pics of all the food to eat and what to avoid. I'm in the U.S.

Check out the website DaVita.com and also go to kidneyschool.org/mods/ and read through all the modules to educate yourself about CKD. The more you educate yourself the better. Then write down any questions you have for when you see your PCP or Nephrologist. Most people aren't referred to a Neph until they are Stage 4 (I wasn't) or Stage 3b.

Best wishes to you.

[Kernewek in reply to Sophiebun11]

Good morning Sophiebun11. Thank you for taking the time to contact me and for passing on all this great info, off to do some reading now! After my initial feeling of "dread" over the diagnosis of CKD, my usual pragmatic approach to an illness has returned, and I will read every thing any one suggests - I have found in the past, that although some sites may be almost identical in information, there is always that 1 extra sentence with a pearl of wisdom. Keep well.

[horsie63]

I'm in the US and figured out myself I had CKD back in 2015 but it wasn't until 2018 that I found a good nephrologist and at that point I was stage 4. A biopsy showed my CKD was probably due to hypertension which I now have under control. One thing you want to do before making huge changes to your diet is look at your sodium level, we all need some but try and limit it; look at your potassium and yes we need some too but again try and limit it. Finally look at you phosphorus. There info out there on nutrition labels and how to read them. Fresh fruit and veggies are best but if you don't have protein in your urine adding chicken and some fish is also good as you also need some protein. There's too much difference in each of us to say one way is best. Looking at your lab values and understanding what they mean is the best way I know.

[Blackknight1989]

Hello and welcome. No excuse for you not being told of your diagnosis. In my opinion that is cause to IMMEDIATELY change doctors as they have no right to withhold YOUR conditions for YOU no matter if it’s just “stage 3.” However, it seems that is fairly common in Britain unfortunately. Dietitian as diet, exercise and mental management is about all you as a patient can do. It is progressive so I’d just always be cognizant that you can progress so as to not have a mental letdown and if/when that may happen. If you are committed to maintaining stage 3 diet is probably the biggest step you as the patient can take. I think Farxia is approved so worth an ask as the research on the benefits of SGLT2S is overwhelmingly positive even in non-diabetics. Really not much else you can do other than the positive mental attitude, exercise, nothing in your mouth until you talk to your doctor, cut out the alcohol, no pain relievers except Tylenol and eat the CKD diet. It is exhaustive, requires monitoring from your doctor as well which is probably going to be an issue, so lastly I know it’s much harder for you guys than for us in the US but I’d change doctors ASAP and see a nephrologist if able. Here is a good link in the UK for CKD as it has all the patient advocacy and other health care teams in the UK for your benefit:

thinkkidneys.nhs.uk/ckd/inf...

My best to you!