Spotlight on the Ssc Patient and HSCT: Katrina Brown
‘My name is Katrina and I served in the British Army 1999-2004 as a Combat Medical Technician. Feeling ill with a variety of symptoms including increasingly severe Raynaud’s, it wasn’t until April 2008 that I was diagnosed with scleroderma. At that time my skin scored about 28 (that’s poor), I suffered from carpel tunnel syndrome, inflammation and painful joints and raynaud’s. My lungs became involved with a diagnosis of Interstitial Lung Disease (ILD) in October 2013.
I heard about Hematopoietic Stem Cell Transplant (HSCT) and I researched all I could about it. The more I discovered, the more I believed it could help my situation… and I knew I wouldn’t stop until I had tried everything to get it. For me, it was the hope I needed and I realised it was, and remains, NOT an ‘easy option’ but I also knew that if I had the opportunity for HSCT, for me the risk was worth taking.
The risks of dying were, and currently remain high. My research revealed that it isn’t suitable for everyone with systemic sclerosis and there is a fine balance undergoing a HSCT early enough in the hope that you are strong enough to survive…. And leaving it late enough that the risk is worth taking! This decision on timing, has to be the individual’s, working with a trusted and knowledgable doctor… and of course, it is a conversation to be had over and over and over with family, friends… and then the doctor who will perform the transplant and look after you throughout the whole lengthy process.
Living in the UK, HSCT was not available to me, so I had to travel to Chicago to see Dr Burt. I spoke with several of his former patients who had already undergone HSCT and found that I liked him and his passion for his work. He has been working for 14 years, and on 23 autoimmune diseases, to create this stem cell transplant. Before that, he worked on stem cell transplants in the leukaemia field. I looked at The Lancet – an article from July 2011 – and talked to people who had gone through it two and four years earlier. I also read the blogs of three or four more previous patients. Then I was comfortable enough to move forward.
In 2012, the disease progressed, time was against me as things became critical. My heart was showing signs of fibrosis and stiffening and undergoing HSCT with a stiff heart is a non starter because of the fluid that is required to perform it. I had to raise £125,000 to pay for the transplant. I feel very fortunate because I have many very dear friends who all rose to the challenge and helped me. The support was overwhelming but there was so much red tape to unravel, it was a hugely frustrating time too. For example, opening a bank account for me but NOT in my name took 9 months to be cleared by the authorities as ‘non-fraudulent’ as I wanted to account for every donation! Releasing medical documents, insurance, flights, accommodation, organising events were all hurdles to overcome. It was the most hectic time of my whole life and when I wasn’t sure I could carry on I remembered that I was truly ‘fighting for my life’.
I began interacting on social media, contacted newspapers and news channels. I was often asked who was running my campaign and the answer was ‘me’.
The pros of having HSCT, from my perspective were:
- My disease would have a 75% chance of halting progression = MY MAIN GOAL
- That would increase my life expectancy significantly
- My lungs had a chance at improving significantly – ICING ON THE CAKE
- Others were feeling very well and resumed many of their old activities after HSCT, including running! A BIG INCENTIVE FOR A PREVIOUSLY ACTIVE WOMAN
The cons were significant:
- It could be a life ending procedure. See The Lancet January 2013 ‘It’s a Matter of the Heart’
- 25% chance of HSCT failing to halt the disease
- Procedure could not be done in the UK and it would be a long time commitment. Three months in Chicago plus 100 days of very limited exposure to the outside world
- Feeling very ill due to the chemotherapy – worst ever flu and more
- High financial cost and short time to raise the necessary funds
23 April 2014 – I was in the USA and the day had finally arrived! When I was admitted to start treatment I had seven people sit with me for the first day. One of those was my husband, four were pioneers themselves and two were carers of pioneers. I can’t put into words how much that meant to me. For me, the actual transplant proved the easy part – no major issues – not what I expected and I know I was extremely lucky and probably unusual.
And what next? I keep a diary of how things are going:
50 days in – feeling great! My goal was always to stop the disease progression, not necessarily to improve my current condition.
My skin is softer, skin and joint swelling reduced and slightly more movement, aching joints and tendons are nearly gone, digestion and eating has improved – no longer reacting badly to red meat and gluten. Showering no longer wipes me out for the day…..
But I am still often fatigued and I am sick easily when introduced to new people and animals.
100 days in – I feel so much better than I expected to!
Continued skin improvement, decreased medication including for the gastro issues, blood pressure and pulse within normal range, no more stomach bloating, my digital ulcers have finally healed after 4 years, although Raynaud’s still remains a huge problem. Fatigue is less of an issue than before.
Doctors cannot claim a ‘cure’ and the aim is to halt the progression of disease, if possible. For me, it was more successful than I could ever have hoped for. This treatment is not suitable for everyone and there is a ‘window of opportunity’ when it can even be considered…. So I am humbled and thankful and know just how lucky I am.’
Scleroderma News posted the Scleroderma Foundation social clip with Bill and Cyndy Martins, presenting an all inclusive, all you need to know about HSCT session.
To watch the video click here: click here
Katrina makes her screen debut at 53 minutes, 20 seconds.
Katrina is currently getting ready for her medical check up in Chicago. Here at Scleroderma News, we wish Katrina all the success in the world with her medical results and progress.
To keep up to date with Katrina’s progress follow her facebook page, ‘Katrina’s future’. www.facebook.com/KatrinasStemCellFund
And huge thanks to Katrina for sharing her Ssc patient experience, being the brave, strong lady, that she is.