Awaiting diagnosis

[Cookiemum]

Hello,

I’ve just come across this group and I’m feeling hopeful I can get some reassurance and advice.

Apologies for the long post but this is my story so far…

I’m a 36 year old woman. On Fathers Day I went to my local A&E department because I was experiencing eye pain in my left eye. I was assessed and based on how I was presenting they diagnosed Episcleritis. I was given artificial gel tears and told to take Ibuprofen for 3 days. I did this and then had a few days break but the pain returned so I did another 3 days of Ibuprofen. At the end of this course I returned to A&E after waking one morning and not being able to open the eye. This time it was suggested that I had a form or Uveitis or Iritis and I was referred to the Eye Clinic. I was told an appointment would be 7 days and to continue taking the Ibuprofen. I did this but didn’t take it on the days I was feeling ok. I never heard from the hospital regarding my referral as I had arranged an appointment with my Optician who referred me to the Eye Clinic.

I was subsequently diagnosed with Anterior Uveitis and put on a long course of steroid anti-inflammatory drops which I’m still taking (currently on 4 drops per day). The Ophthalmologist said that Uveitis can be linked to autoimmune diseases which made me worry. A few weeks before this on a really hot day I had experienced a nasty case of diarrhoea which had bloody mucus at the end which was very scary. My GP got me to do a stool sample which came back clear and I was given a 3-day course of antibiotics. In light of the comments by the Ophthalmologist I had a telephone consultation with my GP and voiced my concerns. At the time I was leaning towards something like Chrons disease or Collitis. Some symptoms I had included feeling drained and lacking in energy but I’d found lockdown exhausting with homeschooling an 8 & 10 year old and put this feeling of lethargy down to that. I’d also gotten into bad habits of eating too many snacky items and not doing a lot of exercise.

My GP really listened and said I should have a blood test, he was going to also check my stool again for signs of inflammation markers and look at my thyroid function. 2 days after my blood test the Surgery called to say my blood test showed low kidney function and I was being referred for a Kidney Ultrasound. My stool sample was once again clear. At this point I started to panic. I only waited a week for my U/S and got a call 3 days after that telling me that the U/S showed low kidney function so I was now being referred to a Urologist. In a state of shock, fear and panic I asked to have a telephone consultation with my GP so I could understand my results. When this happened my GP explained that my eGFR was 41% which would put me in the stage 3 category of kidney disease. He said that my last blood test in 2017 showed my eGFR at 87% so something has occurred in that time to affect my kidney function so needed to be investigated further. I had done a urine sample because I have foam in my urine and he said it was clear of bacteria which is a good thing but he also said it didn’t mean anything. With everything going on in my head I forgot to ask about protein! He did say on more than once that he didn’t think it was anything serious but that didn’t really reassure me. He just said it was important to establish what has caused the reduced function. He asked me to visit the surgery for a BP check which was 122/70. He said I was not anaemic but my haemoglobin was a few points lower than it was last time (I can’t remember the number) so has put me on iron tablets for 2 months. I’ve been taking this for 1 week so far and have noticed I don’t get head-rush anymore when I stand up too quickly. The U/S showed that my kidneys are enlarged so I’m not sure what that means.

When I chased up my referral I was told urgent referrals are on an 11 week wait and non-urgent referrals are on 27 weeks. I was told my referral was non-urgent so my in-laws said they would pay for me to see a private consultant so we could find out what’s going on as my anxiety is through the roof (not helped by Dr Google!). I made an appointment at a private hospital for 18th August and then today I come home to a letter saying I’ve got my NHS appointment on 23rd August. Now I’m in a state and questioning why it’s come through so soon. Have they looked at my file and think it’s serious????

I just want to know what happens next. I’m terrified of what they are going to find. If I do have CKD, has it been caused by something sinister? 😭😭😭

In the meantime I am making sure I drink 2 litres of water a day, I’m eating loads of fruit and veg. I’m driving my hubby nuts by watching the salt content in what I’m eating. It’s stressing me out so much as I’m so scared of eating the wrong thing and damaging my kidney further.

If you’ve got to the bottom of this then thank you so much. X

[Bassetmommer]

Hi Cookiemum,I know it is scary not knowing what is going on. Try not to worry. As for cause there are so many things that can change your GFR, not only from month to month but day to day.

I will say that I had Gastroenteritis last summer and it did lower my GFR. It was simple infection and it only lasted for a while and you described many of the symptoms I had. I got it from eating raw basil from my garden without washing it. Silly me.

Even if they do diagnose CKD, it truly is not the end of the world. There is so much you can do to help yourself to keep the function you do have, and in some cases even improve it.

Wait until they see what ALL the test results show. Ask questions and if we can help yo along the way, we are here for you.

[Cookiemum in reply to Bassetmommer]

Thank you so much for taking the time to reply, I am so grateful.

I’m such a worrier when it comes to my health, especially since becoming a mummy. I tend to think worst case scenario straight away and Google things I shouldn’t. My husband mocks me to try and make me see the funny side but I just can’t help it.

I feel so frustrated with myself for thinking that my fatigue was due to lockdown and feeling low about family dramas that have been going on.

I have never smoked and after a bad experience with alcohol as a teenager have been t-total ever since. I’m slim built and despite consuming too much convenience food I would say I eat everything in moderation. The waiting is not good for me at all as it gives me too much time to think and that’s not good.

I know I need to chill out but it’s so hard.

[Netty321]

Ibuprofen can cause kidney problems so maybe you need a different pain killer. I suddenly dropped to eGFR 38 and to be honest, covid or not I wasn't getting any advice from anyone, referrals to hospital were being bounced out after stating 'there are no appointments in this department'. Thankfully I found this forum, I followed as much of a kidney kind diet, starting walking every day, lost nearly 3 stone and my eGFR went up slowly to 50 (I requested bloods every 3 months to monitor this myself). You seem to be very lucky with them responding but I imagine it could be a kidney stones if there is a blockage causing swelling which can be dealt with swiftly. Best not to stress though as this can also cause issues with your blood results. Good luck x

[Cookiemum in reply to Netty321]

Thank you Netty321.

I did ask my GP if the period of Ibuprofen use could have done this and he said it was unlikely as normally that kind of damage happens over a long sustained period of use. That’s not to say it could be a contributing factor though.

Well done to you on the changes you have made to improve your health and your eGFR, that’s really encouraging to hear that these changes can make a difference.

I am also eating a kidney friendly diet, drinking lots of water and making sure I stay active.

I’ll update here when I know more.

Thanks again. X

[RickHow]

Okay, lets calmly take a look at what you have described. First, the eye difficulties have nothing to do with ckd lets not discuss them (other than if you were give some type of medication which TEMPORARILY reduced your kidney function, but this is not likely).Taking Ibuprofen does NOT NOT NOT immediately damage the kidney. You have to be on it for sustained period of time and at considerable dosages. 3 or 4 days of some ibuprofen is not going to drop your egfr from 87 to 41. So eliminate that from your problems, other than, don't take any more until more is figured out about your "problem".

Getting an egfr of 41 does NOT immediately mean you have CKD. There have to be other factors involved. This is what all the blood tests and urine tests are all about. And the ultrasound. To see if this is really a disease, or some other condition.

You said you noticed some foam in the urine. This website is full of posts from people who had foam in their urine, automatically assumed CKD, went to the doctor, had the urine tested and found nothing wrong. People just can have foamy urine. I do. IF a person is urine tested, and protein is found in the urine, that IS an indication of CKD. Your doctor said no bacteria was found. ASK ABOUT IF ANY PROTEIN WAS FOUND, or look at your report and see if it says there was or if it was normal levels. It may be listed on the report as "ALB".

What surprises me is the doctor told you the ultrasound report indicated your kidney function was low! I have no idea what this means or how it could possibly be. This makes no sense to me, and i'm no doctor, but a kidney ultrasound may be used to assess the size, location, and shape of the kidneys and related structures, such as the ureters and bladder. Ultrasound can detect cysts, tumors, abscesses, obstructions, fluid collection, and infection within or around the kidneys. Calculi (stones) of the kidneys and ureters may be detected by ultrasound.

You report your kidneys are enlarged. GENERALLY speaking kidney enlargement is usually caused by urinary retention, or:

Kidney stone.

Congenital blockage (a defect that is present at birth)

Blood clot.

Scarring of tissue (from injury or previous surgery)

Tumor or cancer (examples include bladder, cervical, colon, or prostate)

Enlarged prostate (noncancerous)

Pregnancy.

But you report the only thing the ultrasound said was low function. Generally CKD would affect the kidney and cause it to be scared in some area. But they found none of this. And they did not report lockage, nor kidney stone.

What surprises me most is why they don't do another blood test before your visit the urologist. Perhaps at the time of the 41% blood test you had a stone, or inflammation, or UTI, or, or, or. And the 41% was temporary due to some temporary cause.

About your diet, it is of course advisable to eat correctly but don't go crazy. IF, and it is at this time only an IF, it is CKD, at 41%, there is no need to overreact. 41% is MODERATE disease.

Overcompensating your diet can be bad. Our bodies need certain things, including salt. The reason salt is controlled is because it causes water retention and high bp. You don't have either. Just keep your intake at the normal recommended daily allowances. You CAN and should have some salt, some protein, you don't need to become a Vegan, etc. Eating loads of fruit and veg is not going to harm you, but in the short term until you see the urologist it isn't going to magically shoot you full kidney function. CALM down. Eat, drink within limits. Keep us informed.

[mmwsmall]

Hi Cookie mum, like others have said, please stop worrying about what ifs. It will drive you crazy. Wait until you see the Consultant. Make sure you make a lift of the questions you need answered before you attend. Kidney function varies from time to time. If it is Çkd don't panic there is a good life to be had following the diagnosis. Coming to terms with such diagnosis can be difficult. Your reaction to the news is natural so don't beat yourself up.Welcome, you have joined a supportive community