Kidney infection and stones but still unwell. Could anyone help please?

Kidney and urinary tract
1

Hi,

I'm really hoping someone can help me. Don't really know how to start, so apologies in advance.

A family member (in her 20's) had a first UTI approx 2 years ago, was given antibiotics and it cleared.

Last Sept, she suddenly became violently unwell and our GP diagnosed kidney infection, pain was very severe. Cleared slowly after a course of antibiotics. She complained often of low back pain. Became unwell at the end of Nov, again given antibiotics, which didn't give relief of the low back and flank pain. By this point, we had requested an ultrasound scan and knew there was shadowy areas on her kidneys. 

In January before even getting the urology appointment we had requested, she was very unwell and was admitted to hospital where we were told she was clinically septic, IV antibiotics given, saline drips etc. She was still complaining of back and flank pain.  A CT scan showed stones in both her kidneys, the largest is 3mm, this report states that "there is patchy enhancement on both kidneys, one more than the other". It was decided not to operate, the urologist said there is nothing they can do, that the stones were "in the kidney" and would never move or be removed. Put on 250mg antibiotic each night BUT she is still unwell. She complains of a dull lower back pain (over an area higher than waistband of trousers), achy flank pain, both these are dull but vary in intensity, especially after slightest activity. She has ice cold hands and feet despite being in a warm environment, hot flushes or temperature spikes alongside the cold hands and feet. These symptoms were not there before the January hospital admission. She has been unable to work for last 3 months as can't walk, sit, stand without feeling unwell.

We purchased urine test sticks for her to monitor herself for infection. After any walking, sitting for prolonged time, the sticks show 200+++ result for blood! rest for the next days takes it to a trace of blood.

GP had put back pain down to mechanical, assessment by physiotherapist has ruled this out.

i am really worried about her, her pallor is terrible, she feels nauseous, hot flushes/temp spikes, t shirts soaked in sweat at times, cold hands and feet. Trembling hands also. Has been noted that her heartbeat can be rapid, blood pressure has varied from high to low. She has a hot water bottle permanently with her.

im so sorry for this long post. I'm really hoping someone can give us some advice as our GP has no idea who to refer her to! 

 

2

Hi Annie, so sorry your relative is suffering so badly. Lazy GPs are something I have had to put up with over many years as a long term kideny patient, though currently I am lucky to have a great gp.

i would suggest you do a search for kidney specialists that work in your county, and get your go or another doctor to refer you ASAP. 

They cannot refuse you!

You could also seek a private appointment with a specialist, just to get an initial consultation, you don't need the gp to refer you, and it would speed up any future treatment routes. 

Good luck with this, I hope your relative gets the care she needs. 

Sarah x

 

3

Hi Sarah,

Thank you for replying.

We are now on our second GP in our practice and were hopeful but now feel that she has no idea, suggestions are being made for a referral to endocrinology and rheumatology.

It was a lead Urologist at our nhs hospital who stated nothing more could be done for my daughter due to location of stones.  After this I looked for a urologist who had an interest in stones and bleeding, booked a private consultation at a local hospital but my GP stated that I was wasting my money as urologists only want to operate and fix it. She felt a renal physician was more useful, then changed her mind to endo or rheumo.

i was wondering if anyone had any similar symptoms or experience as my daughter?

The cold hands and feet in warm environment are a new thing, only started as admitted when clinically septic in January as are awful pallor, trembling hands, feeling sick and the temp spikes/hot flushes.

I am VERY worried as to what it going on and any damage this is causing her organs and feel it must be linked to her symptoms in January.

i don't know anyone with kidney stones or problems or anything about it but when I struggled with endometriosis a few years ago forums with women who had experienced it were a fantastic help.

My daughter is having blood taken on Friday, can anyone advise which test I should be insisting on?

I am trying to find a renal physician to see privately, I can't find one in my area and all our private hospitals here ask for a GP referral.

we had also consulted an osteopath to rule out back pain and he has suggested it is  heightened sympathetic nervous system response which is giving her these symptoms,,anyone know anything about this?  Or what "patchy enhancement on kidneys" means on a CT scan report?

many thanks for any help. 

 

4

Hi sarah,

many thanks for your reply...apologies, I seem to have made a mistake and replied to myself. Any advice or info you have would be very much appreciated, thank you.

5

Hello Annie I was very interested in your post.I have been a kidney sufferer for 40 years. Neglect by my then GP caused me 7 years of pain and distress.and it was only when a locum read my notes and listened to my symptoms (which were very similar to your daughter's)that I was finally sent to a urologist. By then I had a huge staghorn calculus which needed extensive surgery.I don't want to frighten you or your daughter,,but I can't understand why the urologist is saying that there is nothing he can do,. Surely the stones need to be removed. Since having that huge one removed,I've had several others smashed by lithotripsy.Surely GP can see how much it's affecting her life. You've explained the situation perfectly well on your post and I'd be inclined to re~visit GP and explain your concerns and queries  and ask if it's possible to be referred to a different urologist. You have the diagnosis now you need the treatment. I really wish you and your daughter well. Dorothy

6

Hi Dorothy,

Thanks for your reply. I'm sorry to hear you've suffered so much for so long.

It was at the start of January when my daughter was admitted, the wards were very busy and she wasn't put in a urology ward, so urology registrars were popping into her ward to see her.

On day 2, she was told to fast, CT scan  and prepare to operate later that day, I think they felt that stones would be discovered in the ureter, they would either be removed or a stent put in. No operation took place as no stones in ureter. Discharged with 30/500 co-codamol.

Letter to GP states that CT scan showed no ureteric calculi, there were bilateral intrarenal calculi (largest 3mm). Some patchy enhancement through the kidneys, particularly on the left. 

It was suggested that a cystoscopy be performed.

At the outpatient clinic, the lead urologist stated that these stones would never move and can't be moved. Not suitable for lithotripsy apparently. No advice given other than not to eat a block of cheese a day and consume alcohol if want to,,,all counts towards total fluid intake apparently!!

I find it staggering that she is left with this level of discomfort and pain. Consultant states in a letter to  GP not much more can be done from urology and no cystoscopy will be carried out.

We are totally in the dark about what enhancement of kidney means and where the stones are,, are they deep in her kidney? Do they come to surface? Or stay there? To leave a girl in her 20's thinking this is pain for the rest if my life is awful.

My daughter is unable to return to work, has been out twice socially for a couple of hours in the last 3 months apart from GP, physio appts. 30/500 cocodamol takes the edge off the pain but she's still got low back and flank pain, on the left side.

I have spent last 2 hours trying to find private renal consultant rather than urologist without any luck.

if you or anyone else have any further info, it would be very much appreciated. Thank you.