Day 57 – Morbidity and mortality

For the past 6 weeks, I had been left hanging with the worry of whether I had developed systemic scleroderma. If I tested positive, I knew I was facing up to a 10-year life expectancy, because my immune system would attack all the connective tissue in my body, likely leading to major organ failure and/or cancer. I tried not to think about it and to remain positive, while sipping my life-giving green juice and packing the rest of my juices in a cool bag, but my stomach was doing somersaults with fear.

I would also find out if I had developed Raynaud’s syndrome. It was soon after my last mesh removal surgery on 30th October 2018 when I first began to feel cold all the time, and the skin on my hands around my fingers had turned red and blotchy and the cuts on the ends of my fingers and knuckles more severe.

It was an important day. I had a consultation with Professor Denton, the UK’s leading expert on scleroderma and Raynaud’s at The Royal Free Hospital in Hampstead. My husband had taken the day off work to come with me.

To kill time in the morning, while waiting for the appointment at 1pm, I had booked a yoga class which helped focus my mind on breathing and stretching. The instructor focussed much of the class on stretching the hips. I am always stiff in this area and find it very difficult to sit cross legged now because my Trans-Obturator Tape mesh went through the obturator foramen (the holes in either side of the hip bones). When it was removed, the surgeon had to scrape the mesh out of my bone in the obturator foramen where it had become embedded. Before the class I had a lot of discomfort and pain in the left hip, but amazingly after it, the pain was gone.

We missed the first train from South Acton tube and sat on a bench in the cold spring sunshine for 10 minutes to await the next one. By the time it arrived I was chilled to the bone as I only had on my gym gear and a thin hoodie underneath my coat as we had been in a rush in the end leaving the house.

The short, 20-minute trip to Hampstead Heath from South Acton was a pleasant journey which passed in a blur. The London Overground train was spacious, clean and warm. In summer it would be pleasantly cool with the air conditioning, unlike other trains on the London Underground network.

When we arrived at Hampstead Heath station, we exited the station to find ourselves beside a beautiful looking fruit and vegetable stall. The hospital was just a couple of minutes away, and opposite the entrance we were surprised to walk past a fresh juice bar, where my husband promised we’d go after the appointment. It felt like a good omen.

Consultation with Prof Denton

Professor Denton was a thoughtful and considered, kind man, who had been fully informed of my case by my referring rheumatologist. However, he wanted to hear my symptoms first hand so asked a lot of questions to cover all of my history. After reading up on the histopathology reports on my explanted mesh, he talked about the fact he had seen a number of patients with different medical implants and that they had been the causal link with their immune disorders and that he was very clear in his mind that Mesh had caused my Raynaud’s symptoms and was masking itself as systemic scleroderma.

My test results for autoantibodies, which are indicative of scleroderma, had come back as negative, so Prof Denton said he did not think I had this autoimmune disease, but he wanted to check the capillaries in my nail bed on my fingers to be absolutely sure. The joy rushed through my veins and my heart felt light with relief and I looked at my husband to witness his body relax with relief too.

To hear this wonderful man say out loud that mesh was the cause of my immune ill health (something I had suspected all along) brought great comfort, despite being told he thought I had genuine Raynaud’s. This illness at least wasn’t going to kill me despite how uncomfortable feeling cold is and how painful split fingers are. And he told me reassuringly that many patients with immune reactions to medical implants eventually recover from their immune illnesses. Hearing this news brought me great hope.

Tests: capillary nail bed and thermal imaging

The nail bed capillary analysis was done by a doctor with 27 years experience as a scientist in the field of Raynaud’s and scleroderma. He was a talkative, happy soul, and he shared a lot about the diseases with us and his work. He used a microscope to look at the capillary ends in my nail bed and my shoulders relaxed as I could clearly see the neat lines of capillaries and the bends at the ends where they turned around and went back up my fingers again. He explained that if I had scleroderma the vessels would have pooled together to form large blobs and as mine were all still in neat rows, I was showing no evidence of disease. He stopped talking for a moment to allow this very happy news to sink in.

Next the doctor asked me to plunge both my hands into a bucket of water at 17 degrees for a minute. Swimming pool water is often heated to between 25 and 28 degrees, or 30 degrees in children’s pools, so 17 degrees did give me a mild shock as I placed my hands in the water. After a minute he asked me to hold a white chopping board against my chest while placing my hands on the front of it. A thermal imaging camera pointing at my hands would monitor the returning heat. The thermal image from the camera was projecting onto a TV screen which we could all watch. The screen showed my hands as completely black in colour.

The doctor explained that when we put an extremity, like a hand, into cold water, nerve signals are sent to the brain letting it know that heat is being lost from that part of our body. The brain in response sends nerve signals to that body part causing muscles around blood vessels to constrict. This stops blood flow to the area which reduces heat loss, so that heat can be kept for the core of our bodies. In an adult with normal functioning vascular system, you would expect to see warmth returning to your hands within five minutes as the vascular system communicates with the nervous system that the temperature has risen again so muscles surrounding the capillaries can relax and let blood flow through.

The doctor distracted me with his stories about other patients he had met. A little old lady with severe Raynaud’s who used to warm her hands over the lit gas ring on her stove. Another whose party trick was picking up hot oven trays without oven gloves. And another who prided herself on being able to bear the hottest baths which her husband couldn’t put his toe into. The doctor proceeded to warn us that none of these party tricks were a good thing, as not being able to feel heat didn’t mean that the skin wasn’t damaged just the same. I shared that I have burned myself on hot water bottles at least three times in the past month because I can’t feel how hot they are, which led to a conversation about high-tec heated clothing and hand warmers, which I found out my husband already had for golf.

Five minutes had now passed and my hands remained black on the screen. My heart sank a little as a realised that they were not going to change colour anytime soon. After ten minutes, my hands were still showing no signs of the return of warmth and the doctor ended the test. Raynaud’s looked certain, but Professor Denton wanted to look at my test results first before writing to my referring rheumatologist and letting me, my immunologist and two mesh removal consultants know the diagnosis.

We left the hospital with lighter hearts and celebrated with a juice. I chose an apple, carrot and ginger juice and it was my sweetest yet.

We got home just in time to attend my daughter’s Brownie promise ceremony. She remembered all her words and was warmly welcomed into her Brownie pack by the kindest of Brown Owls. My daughter was glowing with pride afterwards and so was I, but doubly so because of the fond memory of my own promise ceremony 38 years ago.

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