SARCOIDOSISUK PATIENT STORY
Read below the amazing story of Juliet and learn more about her journey with sarcoidosis.
Throughout Sarcoidosis Awareness Month in April, Juliet had been taking on her own version of our Warrior Walk Challenge – she had been aiming, under Doctor’s advice, to walk an additional 3000 metres in 30 days to raise funds for SarcoidosisUK.
“To most of you an additional 3km, or just under 2 miles, in a month probably doesn’t seem very far, even verging on the ridiculous, until I tell you that most days I struggle to walk more than 100 metres a day. This challenge will aim to make me double the distance I walk daily. Add to this that I’m also permanently attached to a machine pumping oxygen into me. This is because I have less than one lung’s capacity left available and my lungs are only 20% efficient at taking in oxygen from the air I breathe.”
Not only did Juliet manage to complete her challenge – she went above and beyond, walking a total of 4100 metres in 30 days! Juliet’s efforts were nothing short of amazing – if you’d like to show your support, please consider donating to her JustGiving page here: www.justgiving.com/fundraising/julietcoffer
Read Juliet’s story below, and watch her BBC South Today interview here: www.youtube.com/watch?v=KNZlMiNV2z4&t=4s
Juliet’s Marathon Dream
I wanted to run a marathon by the time I was 50.
I have wanted this ever since I used to get up early every year on a Sunday morning in April in the 80’s and sit in bed watching the wonderful, enthusiastic runners in their colourful costumes in the London Marathon.
But, in February 2004, my life changed forever.
I’d had a rough week and what I thought were indigestion pains that were making me feel a bit breathless (not unusual for a smoker!). I went to Tesco for my weekly shop and to get something tasty for lunch for my Mum, who was on her way to visit me. I spoke to the pharmacist to see what I could take for indigestion. She asked me what pains I was experiencing and when I described them as going across my shoulders and down my arms, she became so concerned that I may be having a heart attack she sent me straight to hospital. I met my Mum there, no tasty lunch in tow, just a pack of crisps from the hospital vending machine.
The pharmacist probably saved my life, that day. I could have just picked any random indigestion medicine myself and I would never have gone to the GP about being breathless, because as a smoker, breathlessness came with the territory.
At the hospital, the specialist was horrified at what he saw from the chest X-rays and showed me that I had badly onset inflammation in both my lungs. They had no idea why it was so bad but wanted to run tests and scans on the Monday. I was so terrified. I had never been ill. I’d only recently moved down from London to live with my now husband. I refused to stay in hospital all weekend alone and signed a disclaimer promising to go back first thing Monday morning.
After a few weeks and a raft of tests, I was eventually, and so unexpectedly, diagnosed with a rare autoimmune inflammatory disease called Sarcoidosis. This disease has no known cause or cure and affects 1 in every 10,000 people in the UK. It causes small patches of red and swollen tissue, called granulomas, to develop in any organ of the body.
Diagnosis for Sarcoidosis is by elimination – they rule everything else out to confirm the diagnosis. Sadly, the disease is often misdiagnosed because the symptoms frequently resemble other diseases. I had none of the symptoms other than a bit of breathlessness and a slight cough, all common in smokers. Many GPs don’t even know enough about it as they may not have any patients in the practice affected. 53% of people are diagnosed with something else first.
In some ways I am lucky.
In my case it has only attacked my lungs, common in 90% of patients. For others, many have multi system sarcoidosis affecting several other organs at once as well – skin, eyes, nervous system, heart, liver to name a few.
Sarcoidosis gets better without treatment in most patients (around 60%). In others, the condition persists and may require some treatment. For a minority of patients, like me, who develop a more serious form of the disease, more aggressive and prolonged treatment of immunosuppressants to help reduce the inflammation is required.
Unfortunately, I fall into the latter group. My disease has never improved in 17 years. It has only deteriorated, even with treatment. Treatment for me has been based on quality of life versus danger from the disease – an extremely hard balance to strike.
There are long term issues associated with taking drugs like corticosteroids and methotrexate (an immunosuppressant also used to treat cancer). Then there are all the symptoms and side effects you live with: constant breathlessness, continual pains in my bones and joints, muscle weakness, fevers, night sweats, sleeplessness, digestive complications, and long periods of fatigue. I have even invested in a big red soft velvet cushion that I can fall asleep on instantly in front of my computer when a wave of exhaustion instantly hits me. Some days I joke that feel like it is only my eye lashes that work, when there is so much else wrong with me.
There is also the risk of infection from the immunosuppressants. I have been told that my lungs probably will not survive another chest infection, let alone Covid. I am still shielding and haven’t left the house, except for 2 hospital appointments, since 18th October 2019. I made what turns out to be a fortuitous decision in the winter of 2019, to stay in, away from infections. I am now 20 months at home!
The disease has caused another rare problem with my heart, Pulmonary Hypertension, which means the right side of my heart must work extremely hard to push blood through the lungs and get oxygen round my body, as the vessels are damaged from the Sarcoidosis.
So, all things combined, for the last 7 years, the deterioration in my condition means that I have been permanently attached to a great big electricity guzzling oxygen machine, 24/7. This pumps oxygen into me because lung scarring from Sarcoidosis means I have the equivalent of less than one lung’s capacity available, and my lungs are only 20% efficient at taking in oxygen from the air I breathe. For context, without the extra oxygen, my blood oxygen levels drop almost instantly to around 80% on standing. People with Covid were admitted to hospital at 92% level.
It all makes day to day living extrememly difficult. Everything must be planned and nothing can happen in a hurry. I don’t move around more than about 100m a day either as it is simply too difficult on my lungs and body. A few steps from the bedroom to the bathroom can be exhausting. A shower and hair wash can take me over 2 hours from start to finish. It takes 5 minutes to catch my breath just from putting my bra on. Bending over squeezes the air out of my lungs, so I need help putting socks and shoes on. Cooking is tricky as the oxygen is flammable. I can’t travel abroad, although with current Covid restrictions many are in my boat at the moment! And just to go out for the day requires me to take 8 oxygen cannisters, the size of fire extinguishers just to be out for 6 hours. These are little things, but all make life more challenging.
My clock is ticking…
My condition is deteriorating and there are no treatments left, known to work with my current diagnosis. I have tried several, but they all made me more ill than the disease was making me. I have made the exceedingly difficult decision not to try any other treatments as I want the time I have left to be lived as normally as possible.
I was told just over a year ago that 50% of people in my condition do not survive more than 2 years untreated. I have a palliative care kit sitting in my kitchen, my will is written, difficult decisions taken about resuscitation and my husband knows that everyone is to wear bright colours at my funeral. No tears allowed. Life is to be celebrated. It is not something I was planning for at 50 and certainly not the marathon I was planning to run.
BUT all the way through my illness I have always stayed positive. I wake up each day as a new start and I get up every morning and deal with all the challenges as though they are just starting anew. I want to be as normal as I can for a 50 year old. I still work as a computer teacher and web admin and I continue to live life, but in my way. It is just a different way of living to others. I refuse to live life dominated by my disease. I will always try and look on the bright side of life and find humour is definitely the best medicine.
I also can’t pretend that it doesn’t affect me mentally, I have been seeing an amazing counsellor for the last 4 years to help me deal with anxiety and the reality of living with a long term chronic, and in my case, life limiting disease. I have bad days sitting in uncontrollable tears, thinking ‘Why’s it got to be me?’, but you can’t dwell on it. You cannot dwell on knowing you’re going to die, otherwise you may as well just give up. Like that song I get knocked down but I get up again.
This all put paid to my marathon dream…. or did it?
In March this year I decided dreams still can come true. Everybody faces life’s challenges differently; everyone’s marathon is different. Why shouldn’t I have my own one? I created my own version of a marathon, a more accessible one. I needed to start moving around a bit more and I knew that if I didn’t do this challenge now, I may never be well enough to do it. Most importantly I wanted to use it to help raise awareness of my disease, as well as raise funds. This will help find a cure to save lives for those that come after me. I want to make life better for the people who come after me.
Under Doctor’s advice, my marathon was to walk an additional 3000 metres in 30 days. To most people, an additional 3km, or just under 2 miles, in a month probably doesn’t seem very far, even verging on the ridiculous, until you realise that, I struggle to walk more than 100 metres a day. This challenge doubled the distance I normally walk daily.
Add to this my permanent attachment to an oxygen machine as well as all my disabilities and dysfunctional body parts, then it is quite a challenge!
The 30 days of the challenge were amazing. The challenge went phenomenally well and I was truly amazed at what I was capable of. I planned to walk 100 meters a day and by the end of the challenge, I was walking 150-200 meters a day, to and fro in my front room. I ended up covering over 4,100 metres instead of the planned 3,000. I think there is a lesson in there for everybody, if you put your mind to something, you can do it.
Even better than that, having started with an expectation of raising only £300 on Just Giving, for the charity SarcoidosisUK, the fundraising has gone way beyond my expectations I have raised over £20,000 including gift aid. It is simply incredible and totally humbling, a number I never thought I’d see. Even better, The British Lung Foundation will match the amount I raise which means over £40,000 for the charity towards research for a cure into Sarcoidosis.
Pause though for this sobering thought, that the majority of fund raising on Just Giving for SarcoidosisUK is in memoriam of relatives and loved ones. I am a very rare example of a sufferer able to raise such funds with their condition.
This fantastic small charity is so grateful for my “incredible fundraising efforts” I have raised over a quarter of their annual research budget. I’ve had some fantastic local coverage, on press, radio and TV and coverage in Jewish community papers which helped raise the profile on a local level of Sarcoidosis. Now I want people to be aware of it nationally. I want people to have the right diagnosis, get the right treatment and for sufferers to be understood.
Sufferers online have been contacting me telling me they are also ever so grateful for the exposure. Many feel people don’t understand the disease and what they go through. One sufferer wrote on my Just Giving Page ‘Your effort has done more to raise awareness of Sarcoidosis than in the last 11 years. Well done. This little known and even lesser understood disease leaves a dark cloud hanging over all affected.’
All I want to achieve, in the short time I have left, is for people all over the UK to know about this invisible disease which causes enormous physical, mental and emotional disability. Just because a person looks well, it doesn’t mean they are. Sufferers in support groups often talk about their struggles with GPs, family and employers to have their mental and physical symptoms understood.
I am by nature a very private person and have hidden myself away in Hampshire and kept my disease quiet for over 15 years from most of my family and friends. However, opening up about the plight of this disease has taken a lot of courage and I did it to help others unable to find a voice, isolated at home.
Although my life is different from others, I will continue to make the most of it. I am truly overwhelmed by the fundraising response to my challenge. I don’t see myself as brave, courageous or inspiring. I just see myself as living life in my own way and trying to make life better for others.
If I can leave the world in a better place, even in a small way, then I have achieved something good.
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