Just Slipped into Stage 4

[Crinkster]

I guess I could use a bit of reassurance. When I first saw a nephrologist, my GFR was in the mid-30's (8 years ago). A few months in, it had slipped into the mid-20's. Of course, at the time I had no idea what was happening so I didn't terribly freak out. Within 6 months I had bounced right back. I started seeing a dietitian and lost 80 lbs in a year and a half. it had bounced back between 35-45, where I have now been for the last 7 years. I've had a mystery illness for a couple of weeks and have had lots of blood work. The last time I saw the nephrologist (3 months ago) I was at 39. During the course of this illness I have dropped slightly each time until this most recent one, now again into the mid-20's. I live in southern Arizona and the weather here has been freakishly hot - 115°F/46°C today. So maybe I haven't been drinking enough fluid? I'm pretty upset. Any words of wisdom, advice, reassurance or comfort?

[Dreamer12]

Hi Crinster

I have CKD also and my Nephrologist has emphasised the importance recently that I must drink lots of water daily so you could try that. Some people follow a special diet to help their kidney function. I was eGFR 48-52 the last 20 years and kept okay. Recently I have been diagnosed with hypothyroidism and now after treating the thyroid with hormone tablets my EGFR which was 88 .. quite a surprise after all these years. Hope you can improve your kidney function too. Take good care xxx

[Crinkster in reply to Dreamer12]

That's an amazing surprise!

I will definitely increase my intake of water and fluid bearing foods, especially fruit. Thanks for responding. I appreciate the support.

[Dreamer12 in reply to Crinkster]

Hi Crinster

Thanks for your reply! It's nice to meet people on here with similar condition. Hope you keep well 😀X

[Celtic]

Hello Crnkster

It would be helpful to know the symptoms of your "mystery illness" and whether you have taken any medication for that illness in the last couple of weeks. Both can have a bearing on the reason for your suddenly reduced kidney function. Some autoimmune illnesses can affect kidney function.

I have CKD3b with an eGFR usually in the upper 30's, and a creatinine of 122. However, I have just completed a second course of a necessary medication which on the first course reduced my eGFR to 28%, increasing creatinine to 130. The second course, at a higher dose, has reduced my eGFR even further (not told the figure!) but the creatinine was as high as 160 just two days into the five day course. My nephrologist has tried to reassure me by saying that in "absolutely almost every case" the kidney function slowly improves after stopping this particular medication - Trimethoprim for recurrent UTIs. I do hope he is right as at the end of the course I'm starting to get some nausea which is possibly as a direct result of the reduced function - dreading to think what it now is but he suggested that I didn't have a blood test for a couple of weeks as it would send everyone into panic mode!! After a bladder ultrasound showed a small mass, I have just had a cystoscopy and biopsy under GA. It's a bit of a tense waiting game for the results but the consultant said that the entrance to my bladder is narrow so that could also be the reason for my multitude of recent UTIs.

We are having an unusually hot period in the UK with temperatures in my area hitting 33C - not what I wanted whilst trying to keep especially hydrated - I've been told to drink 2 1/2 litres of water a day which I'm finding that a bit of a struggle and, in any case, I seem to hold on to the fluid in this sort of heat. So you could be right in assuming that you may not be drinking sufficient water - I'm useless at 33C so would positively melt in 46C!

Another thought is that you could try researching those foods that are high in Creatinine and try reducing your intake of those, including high protein foods which the kidney finds hard to deal with when experiencing reduced function. Good luck and I hope things turn around again soon - they have previously, so do try and stay positive.

[Crinkster in reply to Celtic]

Thanks, Celtic. The symptoms started the same day I received Botox injections in my neck for Cervical Dystonia. I have been getting them quarterly for a couple of years. I contacted the neurologist who told me none of the following symptoms would be side effects:

During the first week I had severe chest pain which wrapped around my torso (on the left side) and around to my back. Taken to the ER by ambulance, my first diagnosis was chest pain (thanks for nothing), a UTI and dehydration. I found the dehydration diagnosis odd since no fluids were administered during the 7 hours I was there. I was given a sulfa antibiotic for the UTI.

Those symptoms persisted for a week. I had to go back twice, the last time for a CT scan to rule out fractures and a pulmonary embolism. I had experienced one 35 years ago and the pain was identical. Unfortunately, they wanted to use a contrast dye, and as you know, CKD patients can't have that. A lung scan ruled out a PE. The pain started to ease on the 7th day; however, I then began to have flu-like symptoms, including a fever. After further labs, etc, my primary was stumped. She said I probably had an infection but she didn't know where. Another round of antibiotics, this time one I have had before. I'm a little flummoxed on why I wasn't tested for Valley Fever, which it seems almost everyone who lives in my environment gets in varying degrees one time or another.

I actually will be seeing my nephrologist today (my regular appt was postponed because I was sick and was unable to drive 1.5 hours to his office). I am also going to make an appointment with my dietitian to follow-up and assess my eating habits (AGAIN!)

Best wishes on getting good news from your cystoscopy and biopsy. I have a positive feeling about it for you.

Laurie

[Zazzel in reply to Crinkster]

I also live in Tucson and have stage 2 at 70. in 2013 I was low 50s, but not diagnosed with kidney disease until last year. My GFR had gone up to 80 , but after a bout with shingles it dropped to 70. I was waiting to fully recover to get tested again, but then caught the flu and now have had migraines. When it rains is pours.

Anyway, the symptoms you've described were similar to what I had with shingles. I did have a break out with mine into a rash, but only after a month of the symptoms. I actually went to the hospital thinking I was having a heart attack.- I had back pain and stiff neck for several weeks then a pain going up my arm and into my chest, nausea, dizziness, elevation in blood pressure etc. They kept me overnight at the hospital and ran all kinds of heart tests, but nothing. A few weeks later I broke out in shingles. Probably not what you have, but something to keep in mind. Shingles don't have to break out into an actual rash.

Good luck!

[Crinkster in reply to Zazzel]

Thanks, Zazzel. That's an interesting reply because on the same morning I was initially released from the ER, I saw a NP at the United Community Health Clinic. Her initial response was for me to be on the lookout for a shingles outbreak. I had the vaccine but that didn't prevent me from getting them on my scalp about 5 years ago. I didn't know a rash didn't have to be present. Thank you for that information.

Do you see a nephrologist? I go to AKDHC in northwest, which is a long drive for me but worth it (I'm actually in Green Valley). They have a St. Mary's office, too. They have a dietitian working right in the practice.

I appreciate the reply.

[Zazzel in reply to Crinkster]

Yes, that is where I go as well. Yes, seems that I know a lot of people getting shingles. It's not contagious (unless you haven't had chicken pox, then you would get chicken pox and not shingles) so not sure why there would be a breakout, but I got them Eeek, scalp- that would make me crazy. Hope you don't get them again!!!

[bowler in reply to Celtic]

Hello Celtic, Just to say that I'm sorry you have been poorly, I do hope things are a a little better for you, but not easy in this heat, thankfully it's much better today.

I have recently had another UTI, so more Trimethoprim, 3 days is enough for me as I start to get nausea and constipation, and no doubt my eGFR has gone down.

I hope your results are good.

bowler

[Celtic in reply to bowler]

Oh bless you and thank you for your good wishes for my results, bowler. I'm sorry to hear about your recent UTI, too, and your side effects from the Trimethoprim - one of the technicians taking my blood says that she thinks all these meds for treating UTIs are like Domestos! I wouldn't mind if all the different drugs tackled all my recent UTIs once and for all but that doesn't seem to be happening. The only time in my life that I have experienced UTIs before was in my childhood.......and that led to removal of a kidney! I need a magic wand this time around! Thanks again for your kind support, bowler.x

[Keithtim10]

Hi Crinkster i am Stage3/4 CKD and have been for some time and its not going to change due to the scarring on my kidneys caused with the Wenegers Vasculitis.My GFR has been similar in terms of between 30/44 but no higher.I am of course on Pred Steroids and i am on Rituximab every 6 months in face having my infusion next tuesday.This at the moment seems to be working for me i have to say also i agree with you in terms of taking on board fluid.This will obviously keep the kidneys moving along i have noticed the same here its been quite warm 30 degrees albeit not as hot as you.Hope your GFR starts to rise i know how you feel because about 7 month ago i had a relapse and mine dropped to low 20's and thats when my consultant changed my treatment and so far ok.Main thing is keep talking to the medical guys and to people like us on here for guidance and help.

Good luck

[Crinkster in reply to Keithtim10]

Thank you. I am suspecting more and more that my problem is a function of not getting enough fluids. I've been told that if I'm thirsty, I'm already dehydrated. It's very easy in the winter to not drink enough water because the days are mild, so I'm not as conscientious about it. In this heat,it's difficult to not think about water - when you go out. I always take 2-6 bottles with me. It's times (like recently) when I've been stuck in the house for long periods of time during which I simply don't think to drink anything. Even though every place is air-conditioned, the humidity is 10% give or take, even in the house.

[Keithtim10 in reply to Crinkster]

True Crinkster its tough i do appreciate and sometimes its a state of mind to get into.Keep talking to family,friends and us guys on here for support the secret is dont dwell on your own we are out here.Good luck.

[Bunkin]

Hi Crinkster,

I am stage 5 but have been there at least a year and a half( that's when I found out by accident how bad my kidneys were) I was at 12 GFR. I got a program called the kidney disease solution. I exercise every day, drink plenty of water, watch my diet and take supplements. Yoga is also good. I am still at GFR 11. My goal is to maintain but you could really benefit from this program. I hope you give it a try! I have found I have to take charge of my health and do what I think is right as well as listen to my doctor. Hope this helps. Prayers for you, God can do anything😀

[Crinkster in reply to Bunkin]

Thanks, Bunkin. I am going to make an appointment with my dietitian. I'm wary about supplements unless guided by a doctor. I've had good intentions about getting out to walk; however, shortly after I began, I had surgery on toes of both feet. They all got infected. What should have been a pretty short-term, relatively painless recovery wasn't. It took over 2 months before I could wear shoes. I want to get started up again, but i have to force myself to get up and out before 7:00. Otherwise, it's just too hot (for instance, it's only 9:30 right now but the temperature is 102°/39°). I guess it's a matter of motivation and sheer will. I know not drinking enough water has got to be part of the problem, too.