Chronology of my illness-Pre diagnosis

September to November 2010  

Achey legs after short walks,  headaches,  tiredness.  Put it down to the menopause

End of November 2010           

Went to see GP, he did a blood and urine test and told me I had a urine infection which I wasnt aware of and gave me some antibiotics

Beginning of December    

Saw GP again as feeling worse, now short of breath, coughing and rib pain around kidney area, and had no appetite which is very very unusual for me!

He gave a further course of antibiotics and blood and urine tests done again.  Was advised not to go on planned holiday to India on 11 December with my partner.

A few days later

Went back to Doctor as still no better, was told that the urine infection had cleared up and was referred for a scan of my abdomen, bladder and urethra which was clear. Then my GP made an urgent referral to a Urologist at Wythenshaw Hospital which now I can hardly remember. I was there for about 4 hours with more tests and examination but nothing was established.

My GP then referred me for an ultrasound scan of my kidney, as the appointment wasnt until sometime in January I decided to pay for one privately.  I had it done the next day and that was clear too except the doctor told me my kidney was slightly enlarged probably due to the urine infection.  I breathed a sigh of relief although was still feeling pretty awful.

15 December 2010

Went to work but was sent home after an hour as I was clearly unwell, thirsty, breathless, tired and weak.  Went to bed in the afternoon.  Got a phone call from my GP about 5pm to say that I needed to go to hospital as there was a severe deteriation in my kidney function from the last blood test to the most recent one, a week later.   He told me my kidney function was 10 to 15% of what it should be.  He said to pick up a letter of referral and some notes from the surgery on the way and said he had contacted the renal unit and told them about me and that I would be admitted via A&E.  My partner and I were shocked, I packed a few things and off we went to the Manchester Royal Infirmary where I was finally admitted to the acute renal unit at about 11pm when a bed was ready.

All a bit of a blur now but I was put on a saline drip and given some steriods or anti biotics of some sort on a drip as well I think and not surprisingly had a sleepless night.

16 to 24 December 2010

Remained in ward 36 acute female renal unit and was introduced to a world previously unknown to me of drips, cannulation, 24 hour urine collections, daily blood tests, ward rounds, hospital food. I had never been in hospital before. I was on a side bay with other patients.  My memories are of sleepless nights due to numerous disturbances with other patients (from snoring, being sick, emergency admissions, having tantrums, being confused and shitting themselves).

I was told that I was getting better and found out about the all important creatinine level (some measure of kidney function). When I was first admitted it was over 1000 but was dropping each day by two or three hundred a day. The funny thing was I didnt really feel ill but I know I came very close to needing dialysis.

The doctors were obviously concerned to try and find out the cause of my acute renal failure.  It happens for a reason.  One thought it could have been a reaction to the anti biotics I had been given for the urine infection, another thought perhaps a reaction to a Hepatitus jab  I had for going to India.  They wanted to do a kidney biopsy which I bravely consented to and which was performed by a lovely Indian doctor who my partner and I chatted to about our planned trip to India which was a good way of distracting me from the biopsy.  I have to say that it was relatively painless compared to the bone marrow biopsies I have since had. Afterwards my blood pressure and temperature were monitered every 15 mins for the first hour and then about once an hour for another 4 to 5 hours in case of internal bleeding.

I had to lie completely still for about 5 hours afterwards and my partner obligingly fed me!

The provisional results were I think back 24 hours later and I remember the consultant crouching down beside me (they are not allowed to sit on your bed) and saying there were 3 possible explanations for my kidney failure:-

1. Nephritis ie a reaction to a drug

2. My kidney was fighting a long term infection

3. Paraprotein is being produced to excess as a result of a cluster of bad cells which will need to be treated as it is attacking the bones and damaging the kidneys

He said they would know more when a bone marrolw biopsy and X rays were done.

I wrote the above down on my iphone afterwards just so I could remember what he said as none of it made a lot of sense. The main thing to me was that I was getting better and my creatinine was now 307 (normal levels are under 90) and they were talking about me going home in a few more days. But now I know that no 3 was a fairly innocuous way of saying that I could have cancer.

Then a couple of days after this, I was sitting in the day room thinking I would be going home soon when Dr Darg (the lovely indian doctor) came in and said he wanted to talk to me and asked if my partner would be in shortly. As it happens my partner had just arrived and so we all went back to my bed and Dr Darg drew the curtains around. I knew by the look on his face and the fact that he had drawn the curtains that whatever he was about to tell me wasnt good news.

He said that some further results from the kidney biopsy had come back from the lab which showed some abnomal proteins had deposited there (proteins that I shouldnt have, that nobody should have). I immediately asked if I had kidney cancer. He said no but that it was possible I had bone marrow cancer and these abnormal proteins were coming from the bone marrow and being deposited in my kidney. He then said there were lots of treatments to deal with this and that someone from the Haemotology Unit would come and talk to me and that a bone marrow biopsy would be the next stage and full body xrays.

I am not sure how upset I  was at this stage or whether I realised how serious it was, I just remember being disappointed that I wasnt going to be allowed home in the next couple of days because of these further procedures!  I will deal with the diagnosis stage on a seperate page because otherwise it will be way too long to count as a page.

 

 

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