My
Raynauds, Scleroderma Story - Roy Louden
Roy
Louden describes his diffuse scleroderma experience,
including
life saving heart surgery:
'1960 - 1995 Born
healthy in Palo Alto California with an identical twin brother.
Moved around the San
Francisco bay area a lot in the 60's because of dads work.
Brother and I were on
billboards across the country end of 1965 for 66 Ford Fairlane.
At age 15 in 1975, I
got into theater technician work for a repertoire group my dad was in.
In 1978 made 2 short
super 8 films in high school.
In 1981-82 I made a
45 minute 16mm film,
about the four musketeers. Click here
Moved to L.A. in
1983. Married in 1987. Moved to Oregon then Atlanta. Divorced in 1991.
Upsetting, but not a traumatic kind of thing some people associate with
autoimmune issues.
Moved to Orlando.
In 1993 made a 25
minute parody
of the Terminator films. Click here
 |
| San Francisco1965 |
Orlando 1991
1999
switched over to Universal studios. Still a pyrotech, but working with stage
pyro, rock n roll kind of stuff... and setting a stuntman on fire with Coleman camp
fuel (naphthalene).
2002
Strange symmetrical itching begins. I pass it off as the allergy to Florida.
2004 My
fingers start turning white when touching cold surfaces. (Raynaud's phenomenon)
2005
While staying at a hotel while house was being repaired from hurricane damage,
I noticed under the white fluorescent lights in the room how discolored my skin
was getting on the chest and lower back.
Didn't see it so much
in the orange incandescent lights at home. Went to primary care doctor who did
a biopsy and diagnosed scleroderma from the overproduction of collagen. Further
blood work and muscle biopsy confirmed.
ANA tests negative.
Stopped working with pyro... moved within Universal to video editing.
All skin getting
redder.
Mouth getting
smaller.
2006
The year of getting weaker and weaker and the people saying “you don’t look
sick” phase.
2007
In March I suddenly could not play various chords on my guitars any more. 4
months later arm muscles shrank; hands could not turn palm up; hands curled in tight.
Start prednisone and methotrexate.
I start getting the typical red spots on
face, back and chest (telangiectasia)
The digestion/bowel problems begin.
The
last year of being the proper 175lbs for my 6' 0" height.
2008
In January, a year after my doctor at that time told me I should stop working,
I stop working. Not because of the hands, but the unpredictable bathroom runs.
It went on to be wonderful year of constant diarrhea and vomiting.
Can only eat
eggs, oatmeal and unsweetened apple sauce. Made the big mistake of eating lots
of store bought yogurt. All the sugar just made things worse with the bacterial
overgrowth. Methotrexate stopped for not doing anything other than giving me a
stomach ulcer. On SS disability in August.
2009
All the dehydration from the diarrhea made for constant low electrolytes. In
November I go into ventricular tachycardia. Pass out on way to hospital nearby
and wake up in big hospital uptown. I had to be zapped while I was out. A week
later I get an implanted defibrillator (dubbed Sparky by my brother) and meds
for the heart.
2010
3 months after getting defibrillator, it saves me for the first time after
collapsing to the floor at home. That first zap woke me up and made me feel
like a million bucks. Went to hospital anyway. Meds are changed, all good for
the rest the year heart wise. Digestion issues continue, but more manageable.
Mouth loosens up, but bottom lip remained thin on left side (my left)
2011
In May I went to the hospital do deal with hernia I had had for a while. No
biggie right? They x-ray the area only to find air in my abdomen. “Forget the
hernia, we need to go in and see what's happening.”
They find and remove 9 feet
of perforated small intestines.
They made some bad medication decisions though
as when I got home, I went into nonstop v-tach where my defibrillator
shocked me 10 times till things settled down in the ambulance... meds fixed it
up after a night in the hospital with some of the most messed up dreams ever...
that I still remember… all was good, for a while.
While I have always
eaten well, like many, I still had sodas and junk food treats and alcohol. This
is the year I put a stop to all that. Not all in one day, but within the year.
Unfortunately the heart meds started to lose their effectiveness. Starting
November, I'd have v-tach, get shocked, go to hospital, get released... repeat.
2012
The v-tach/shocks continue. Had a hard time convincing the local hospital to
send me to the big one, I start having my neighbor take me straight to the big
hospital uptown where I played the staff there till I got the same brilliant ep
cardiologist that saved me in 2009 (turns out he's one of the best in the
world).
I remain in that
hospital for the entire month of March as it takes time to schedule out what he
plans to do with my heart. In the first week, before the ablation procedure, I
go into an unstoppable v-tach. Zap after zap. The heart rate goes so high the heart
stops moving blood (heart just undulating) code blue, cpr, paddle shocks.
Sparky can only shock
6 times in a row till it has to recharge like an old flash unit. I wake up out
of it unable to speak clearly for 20 minutes… 20 minutes of thinking that might
be permanent.
Now the doctor
realizes he must do ablations in the heart, but also knows I will probably go
into v-tach when the catheters reach the inside. He wants to send me up north
to a specialist he knows... denied by medicare.
He plans to bring in
an additional doctor that is an expert with the impeller pump. A tiny pump that
goes up the leg artery into the heart, opens up and will keep blood flowing
(though very slowly) should the heart undulate again unable to pump blood.
The doctor tells me
despite all this "you could die" I say "if we don't, I WILL
die". We do the deed. Sure enough, the pump was needed, he ablates 2 spots
to correct the symmetry of the heart's electrical field... success...
Unfortunately, ablating some spots can sometimes cause the need for ablating
another.
The very next
morning, nonstop v-tach again. No need for cpr this time, but shocked just as
many times. The amiodarone/lidocaine cocktail they push into my picc line makes
the world a groovy place despite all the mayhem happening around me. By this
time I have lost count of how many times Sparky has had to shock me.
Another ablation is
scheduled. Sure enough, the pump is needed again. One more spot ablated... and
he also kills the AV node making the heart a slave to the pacemaker/defibrillator
he decides to replace Sparky with.
Waking up from being
on the table for 6 hours (much of that time with the slow blood flow of the
pump) was the strangest experience I can’t really explain... but there they
were, fluorescent lights in the ceiling "I'm still alive!" as I’m
sure there are no fluorescent lights in heaven.
The next day, I get
the docs team to laugh when asking about old Sparky. I asked "was it all
blued like motorcycle pipes from going off so much?"
After all that I was
down to 93 lbs. I decide not to go straight home. I check into a nursing home
for a month and a half rehabilitation.
In the meantime, my
3rd and best rheumatologist, who I made my primary care dr., has been receiving
copies of records generated by that month in the hospital. She notices the
blood work, except for some vitamins and minerals has become normal. I made
arrangements with 2 long time friends in need to move into one of my spare
rooms at home.
Because of the good
blood, we decide to stop prednisone. We aren't using the word remission at this
point, but I start a new calendar... year one.
Early 2013, I finally
get the hernia repair surgery… no issues. Slowly but surely I regain some
strength and weight. That thin lip portion starts going back to normal. The
greyish brownish skin of 2005 is gone.
Was it the heavy
metals and naphthalene? Both have been associated with autoimmune issues. There
is no test… no way to ever know for sure.
None of my former
co-workers have come down with scleroderma because they don’t have my genetics.
My twin brother who
does have my genetics has never worked with pyro… and I won’t ask him to do so
to prove my theory.
By 2016 there
had been no new issues, no v-tachs or shocks and normal blood. No more
Raynaud's reactions.
We now use the word
remission.
At the end of 2011, I
joined a scleroderma forum to hang with others facing the challenge. My
rheumatologist is also a professor at UCF here in Orlando.
Starting at the end
of 2012, she has invited me every year to help with her scleroderma
presentation to her med students. It is pay it forward from here out. I still
deal daily with the damage done.
The heart has been
good but there will always be PVCs (palpitations) and flutters. Hands have
loosened a lot but still cannot turn palms up. I'm topped out at 125 lbs.
As good as I'm
eating, it's hard to compensate for that missing length of intestines. I look
now to the future of stem cell muscle regeneration to truly repair my damage.
In all modesty, I
have never dealt with depression through all this.
A positive outlook
seems to be my default setting… much like that of animals… everyone has seen a
3 legged dog, but no one has ever seen a depressed 3 legged dog.
 |
| First UCF Scleroderma presentation November 2012 |
Roy's current
position:
I remain in
remission, but still deal with the damage done. Damage to muscles, digestion
and heart. The muscles will have to wait for future muscle regeneration break
throughs. Not enough strength to go back to work as loading the dishwasher is
exhausting. I stay busy with hobbies, friends and eating many small meals a day
instead of 3 big ones.
My rheumatologist is Dr Shazia Beg
My life saving
cardiologist is Dr George Monir MD
While I have only been seeing my current GI Dr. since last year... and since being in remission, we are working together to see what we can do to make my damaged digestive system work better as it is missing 9 feet of small intestines. She is quite good... more knowledgeable about scleroderma than my previous 2 GI docs.
Her name is Dr Le-Chu Su, MD.'
A BIG Thank You to
Roy for sharing his amazing and miraculous personal experience with
scleroderma.
To read more about Roy, Click here
Click here, to view the UK Scleroderma Study Group Guidelines for Cardiac Management in Scleroderma.
Roy kindly took part in my global patient profiles campaign, Click here
April 2017.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
Rare
Disease Day is a fantastic opportunity for the entire rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides –
Medical
Research provides the brightest light
for the illumination of the rare disease
patients’ plight.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
 |
| Sept 2017 |
I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman.
I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis.
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: Raynauds Scleroderma Awareness Global Patients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical
research purposes only. No wages or admin costs. Thank You.
#HOPE
Last Update: April 2018
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