Chronic Kidney Disease Stage 3

Imagine logging on to your online doctors booking system and finding that diagnosis.  Yes that is what happened to me a couple of weeks ago!

I had an initial blood test, for a silly health check and my creatine level was off, so one of the GPs called me and discussed the results.  She asked me to drink a little more, asked about other symptoms, I told her about my previous urinary retention problems and that I was experiencing the odd “retention issue” now and again but patience prevailed, it was just a case of sitting and waiting.  Plus I had a backache type pain near my kidneys but just kept dismissing it.  She said I should get myself checked out but first get the repeat bloods done.  So Monday 7th, was the day of blood test, all done and as I went to leave the nurses office, I was told not to worry and the results would be available on Friday.  The next day I logged onto the online system to book the Drs appointment as agreed with the Dr during our previous call and there in black and white is my diagnosis 😳

I was so shocked I got a fit of the giggles, Andrew just looked at me like I had lost the plot and I just said I refused to call the surgery the next day, as it was my birthday I planned on having a normal day with nothing medically related just for a change.  So I left it until the 10th when I called to speak to someone, but once again they couldn’t help me, as only the Dr who had ordered the blood test could speak to me, and she was now off sick.  So an appointment was booked for the 17th Aug.  Fast forward a week and my phone finally rung at lunchtime that day and this is how the call started.  

Dr “Hello Sarah, how can I help you”

Me “Your calling me about the blood test results”

Dr “What blood test”

Me “Well I’ve already logged onto the online system so I know what it says I have so I need to know what to do next”

Dr “ok let me log in and see what’s going on”

FFS you would have thought a bit of prep before making the call?? So in the end she agreed I needed to be seen, however she couldn’t see me as she had no appointments, so could I call back and speak to reception *facepalm*

I sat and thought for a while on what should I do and decided to go into the surgery and ask nicely for an appointment, take it from there.  I headed in and, the lovely receptionist explained there were no prebookable appointments, call back on Monday, this was Thursday!!

So I asked to see the Practice Manager, enough was enough, I wasn’t willing to lose the plot with this lady she was just doing her job, I took a seat and waited for the big chief after all that’s what he is paid the big bucks for.  The lady called me back to the desk, the manager has agreed to release me an appointment for the next morning, whilst grateful and yes I did take the appointment I still wanted to see the Manager, he wasn’t getting out of it that lightly.

So off she went to explain that Mrs Webb was on the war path, she came back and showed me to his office.  I took a seat and calmly and clearly explained my disappointment in the surgery over the last two weeks.  I explained prior to this I had been a huge advocate for BHC and the Drs and Nurses but the way I had been treated was less than acceptable.  He couldn’t understand why the results were on the screen, why nobody hadn’t called me to discuss them first and that was only my first issue.  I said in the act of compassion just shoving results on a PC when you have no idea what’s going on in people’s lives is tactless.  A call was the least I deserved, he offered me an apology, I know sorry is only a word but an apology is an apology I suppose.

As for the Kidney Disease, he then went an found a Dr and we had a quick discussion, I was firm with them both in that room, explaining that with all the other health issues I have right now Stage 3 is the highest level of Kidney Disease I actually want, we need to stop this in its tracks, I don’t want to get a year down the line and find I’m at Stage 4 due to bad condition management.  

My diagnosis’ so far EDS, PoTs, Gastroparesis with Slow Gut Motility, Chronic Daily Headaches/Migraines, Depression with PTSD, Chronic Fatigue, Chronic Pain, Marfanoid Habitus, Fibromyalgia, Osteopenia, Chronic Anaemia , BPPV, Mast Cell Intolerances, and now Chronic Kidney Disease – Stage 3 it’s just a little too much, like the straw that broke the camels back  😢 

I thanked them both for their time and headed home, also thanking the receptionist as I left the building.

What I had forgotten as I explained all this to Andrew was at 10:30, the very next morning we needed to be in London at the Charing Cross Hospital having my next round of Botox for my headaches.  My stomach just sank, why does my brain do this to me?  He told me not to panic just send my neurologist a message that I may be 15 minutes late and would that he ok?  I pinged the message across and got the thumbs up that it would be fine, I heaved a sigh of relief.  

I had a restless night, uptight about the GPs appointment and I’m not a fan of needles so the 30+ in my head and neck are not a joy, but they mean life can return to some kind of normality in the neurological sense, especially when the pain levels half.

We got to the doctors early but she was running ten minutes late, I got worried we would then hit traffic, I shouldn’t have.  I have never met this GP before, I explained quickly why I was there and she said I needed the referral to Nephrology straight away, I didn’t fall into any of the normal categories for Kidney Disease, so I needed to be seen asap.  She tapped away on her PC and booked me an appointment for the 31st August at my local hospital.  I was so impressed with her, I was not expecting that.  We left the doctors and still made it to Charing Cross in time for my appointment!!

Friday was a good day all in all 

S xx

6 thoughts on “Chronic Kidney Disease Stage 3

  1. Hi S, I’m so sorry to hear about your diagnosis. I have a similar diagnosis- EDS3, POTS, autonomic neuropathy, gastroparesis, endometriosis, etc. I have recently been experiencing pain in my abdomen and back, so severely that I very recently ended up in the ER. The blood tests showed quite a few abnormalities such as: low potassium, high creatinine, low co2, high protein, high globulin, high mchc, high neutrophils, high ph, and amorphous crystals in my urine. I am slated to see an internist but it’s a new doc and may take some time to catch them up to speed. I was wondering if you could share your symptoms and was curious if you had similar labs?

    1. I didn’t really notice anything as alongside my EDS symptoms the CKD symptoms are similar IMO. Pain, fatigue and I also experience urinary problems due to EDS so am unsure if this is linked to the CKD. My GFr has apparently been dropping since 2015 but nobody felt the need to tell me, however now I’m under the care of the nephrology team I seem to be getting somewhere. I do notice one specific pain in my right hand kidney but the Drs all reassure me that at the moment I’m on an even keel.
      Apologies for my delay in answering you, I didn’t get notice of your question 🤦‍♀️

  2. missebaby

    where are you in your kidney diagnosis? I have “undiagnosed connective tissue disease”, mcas (probable Hereditary alpha-tryptasemia), end-stage (quite progressive) kidney failure on dialysis, IBS, inappropriate sinus tachycardia, irregular menses, PTSD, anxiety, depression, fibromyalgia, possible Behcets syndrome. I’m being evaluated at the Undiagnosed Disease Network at NIH

    1. I’m fully diagnosed with the EDS3 and have multiple consultants for all the co-morbidities, I was fully diagnosed with CKD at stage 3 and I am under the care of my local nephrology team. Regular blood tests and scans are trying to keep me away from deteriorating, we are working on a new medication regime at the moment to see if it affects my GFr readings over the next three months.

      I hope you can get the correct diagnosis, good luck x

      1. missebaby

        I have confirmed at NIH that I have Relapsing Polychondrtis with kidney involvement, Hereditary alpha Tryptasemia, and Behcets disease. I recieved a kidney transplant on 9/6/2018 and within a month, I started having signs that my disease features were back. It’s the relapsing polychondritis. However, NIH started me on my own clinical trial to see if an older drug used for RA would help, and it’s amazing, it’s called Kineret and it dropped my sed rate and my proteinuria significantly right away. The HaT gives me more symptoms now than before.

        How are you?

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