"Kidney disease dismissed as "fantasies""

About: Chelsea & Westminster Hospital

I have suffered very high blood pressure; water retention with 2-3 dress size fluctuations in a day; kidney and stomach pains; bloating (looking pregnant), sudden stop to periods; excess fullness on empty stomach; very bad back pains. The conditions kept escalating. My GP did blood and urine samples and left it at that. For 1.5 yrs she did not even prescribe BP meds. I was very sick. Back pains left me unable to be active more than 4 hrs/day. The GP sent me to C&W physical therapy. After months of no improvement they sent me for an MRI. The MRI revealed that roughly 60% of my left kidney had a large cyst and my uterus was "collapsed". The entire left side of my stomach protrude football size about 2 inches higher than the right side, the stomach is pushed sideways and lumps can be felt. It even shows over clothing. The GP continued to do nothing. I asked to see a specialist which the MRI report advised. Months later I kept insisting to see a specialist. The GP refused. Instead the GP sent me for an ultrasound at C&W. The hospital's ultrasound technician did a 3 second swipe over my left side and asked if I had surgery because she could find nothing. I again asked the GP to see a specialist. It's now 1 yr after the worse symptoms began. The GP finally arranged appointment with a kidney specialist. Arriving to my appointment the specialist was anything but skilled. When I walked through the door, before I said a word, sat down, or had an exam the specialist rudely dismissed me as a fantasist. Turns out the GP's letter was behind this opinion. I was suffering miserable health problems but getting no medical care. I had always been healthy and only needed a doctor twice in 20 years before this condition. The specialist finally sent me for tests to "prove" the ultrasound was right. I had a CT scan. I became extremely sick after the CT and vomited for almost 2 weeks and the specialist ridiculed that a CT could cause sickness. The specialist left any further treatment out. The CT (again) proved the ultrasound wrong and showed a large growth on my kidney. The specialist advised "if anyone asks you to do surgery, don't. It has no success rate." In fact, PKD surgery success rate is 98% outside the UK. That this specialist has no success rate is of no surprise to me at all. I contacted the CT manufacturer who asked me if I had kidney problems and explained that radiation sickness or the wrong i.v dye can cause problems in kidney patients. The specialist never provided any guidance that PKD patients should observe a kidney friendly diet. My condition is worsening. I've had blood in my urine, and my stool turned white in color and I've passed out. No one has contacted me to monitor my condition. I feel I have nowhere to turn. I want to save funds to go abroad for care, and sue the hospital and the GP.

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Response from Chelsea & Westminster Hospital

Hello, Providing a good patient experience is very important to Chelsea and Westminster Hospital and it would be helpful to have more details so we can investigate raised concerns. To facilitate this, please contact Patient Advice and Liaison Office at pals@chelwest.nhs.uk Kind regards, Patient Advice and Liaison Team

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