The disease you’ve never heard of that drives people to want to kill themselves
MOST people know nothing of the incurable liver illness Primary Biliary Cholangitis (formerly Cirrhosis), whose symptoms can be so agonising and so little understood that death can seem the only way out.
Author: Sally McDonald
For the last two decades one Edinburgh woman has made it her mission to change that – spurred on by the Sunday Post and The Broons.
Collette Thain was a 38-year-old mum-of-two when she was told she had the condition and it would kill her within five years.
She breaks down as she relives that time: “I was so ill I couldn’t even play with my kids. Then I had to face leaving them forever.”
That was 22 years ago.
Today she is celebrating. Collette marks her 60th birthday in May and has just entered the 20th anniversary year of the PBC Foundation – a support group she set up from her kitchen table, providing a helpline and information leaflets.
The charity has burgeoned and now delivers self-management workshops around the UK, acts as an advisory body to the medical profession and helps 10,000 sufferers and their families in 71 countries.
But it has been a slow and tortuous haul, during which Collette lost her greatest support, her solicitor husband Leslie Thain.
Now happily remarried, she remembers: “When I was finally diagnosed I asked the doctor if there was any leaflet on the illness but there wasn’t.
There was no information out there at all and no support for sufferers.
If I’d had cancer there would have been.
Back then the condition – an autoimmune disease of the bile ducts in the liver with no known cause or cure – was wrongly associated with alcohol abuse and sufferers were given little sympathy.
Its symptoms can be terrible; excruciating joint pain, bleeding, lethargy and horrendous itching.
“One of my doctors told me about another sufferer who was so distressed by the itching which they were unable to treat that she threw herself off the Forth Road Bridge.”
She adds: “I couldn’t believe there was no support. I was quite literally dying to speak to someone else about it and so I wrote to The Sunday Post. I had so many letters back from people with PBC and their families.
They came from all over the world. My phone did not stop ringing.
“One couple said their daughter was not treated in time, had a bleed and died. That’s when I decided to set up a support group.”
And she smiles: “One of the Sunday Post cartoonists featured my name on a shop front in The Broons because a member of staff had a wife with the condition who had received help. It still hangs in the PBC Foundation office today!”
Collette’s nightmare began when she was a mum of 18. She recalls: “When I walked it felt like I was wading through tar. I suffered pain in my chest, arm and in my joints and had quite a lot of infections.
“It was thought I might have lead poisoning but that was ruled out.”
Work also became near impossible for Collette, who was then a fraud specialist for the Law Society of Scotland.
Collette waited three months to see a consultant who broke the news that the disease from which she was suffering was incurable and progressive.
She claims she had to battle to see a liver specialist who confirmed she had Primary Biliary Cirrhosis.
One of the organisation’s greatest achievements was to change the name of the disease from ‘cirrhosis’ to ‘cholangitis’ to rid it of the stigma of alchohol abuse.
“On a personal front, for me the outlook is unclear,” says Collette. “I could now be facing transplant. But as an organisation, we have come a long way.”
Note: The PBC Foundation web site is: http://www.pbcfoundation.org.uk/
Source: https://www.sundaypost.com/in10/health/the-disease-youve-never-heard-of-that-drives-people-to-want-to-kill-themselves/
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I lived with PBC for around 15-19 years. (Difficult for me to remember as I fell into a coma May 2017 due to Hepatic Encephalopathy and lost time somewhere. It was only a week but time has shifted and I now suffer with a numb hand due to the arterial line that was in.) I stayed in hospital after many endoscopies and banding’s to the portal vein, then the eventual gluing as I continued to bleed from somewhere.
Drs tried to get me accepted to the Liver Transplant hospital for my area but it was a slow process, it wasn’t known what could be done as I had developed a clot in the portal vein. Eventually after some phone calls and my records copied to them they accepted me to the hospital, an ambulance crew came to the ward for me and I was filled with both hope and fear of the unknown. After a week and a lot of tests I was sent to theatre to have TIPSs (Transjugular Intrahepatic PortoSystemic Shunt) fitted. It took 5 hours but it worked. I now had time to be alive to see if I would be accepted onto the transplant list. Again time has shifted for me but it was around it was around end of August early September when I was on the list.
On October 27th I attended clinic and it was found my Coeliac Disease was out of control and there was a question of removing me from the list as my malabsorption was poor. That night I got a call saying they had a liver for me, again elation and fear. I had to tell the nurse that that day in clinic they may take me off list. Very quickly they got my bloods from that day and spoke to the doctor and sadly the liver was no longer mine. End of September early December I was put back on the list. By now my coeliac was more under control but my T2 Diabetes insulin dependent was still high, I wondered if it would ruin my chances again but knew there was a sliding scale they could put me on prior to surgery.
On the 29th of January, and by now my bilirubin was in the 90s, I had lost a lot of weight, I looked gaunt, but not quite yellowing as I expected, my phone went at 6.20am and it was the transplant nurse, they had a liver for me and get ready, transport was on its way. I started to text and ring my dad to say I was going in, I was petrified and happy.
A paramedic arrived and off we went, once in the hospital it was shower with special stuff and get me on a sliding scale for my sugar and surprise my son turned up. He was so worried but he made me feel so happy he was there. Although a little annoyed he had driven all that way on a work day but his boss was fantastic. As the day got longer (I was meant to be going to theatre around 3-4pm) the nurse arrived to say there was a ‘blip’ but didn’t say what it was. We sat in the room speculating there must be something wrong with the liver, theatre had a problem and so on.
Eventually the Dr arrived to tell me it would be more like 5-6pm when I would go to theatre and that they had to warn me because of the clot in the portal vein there could be a problem connecting it to the liver, it was a matter of if they could clean out the clot and not cut the portal vein too short. I could see my sons face but announced quickly that well it was this liver or the next, I would have the same problem whenever. At around 6.30pm I went into theatre, asked the anaesthetists to make sure I came round as I had two grandchildren to watch grow and with that I was put out.
Now 8 weeks post transplant, I am gaining weight, so in debt to my donor and their family. I look at my two children in a different light and adore that I get to spend precious time with my grandchildre, 4 years old and almost 6 years. I’m still recovering, have a few incision problems and pain but I am alive and so so thankful. PBC is a terrible disease to have, for some like myself as the years go on you notice a difference in yourself, you become slower, more muddled and lack so much motivation due to fatigue, you think you will never be well again. I’m part way there to being well again (with the exception of my other problems) but I’m going to make this work, for myself, my family, my friends and my donor who I owe my life to.