(This post is mostly the means for recording, for my own timeline, what happened to me medically over the last year as a result an allergic reaction to a medication. It's intended to be in order and part 3 of the story (see the last two posts for events leading up. It's more to document than entertain)
I've always
had a healthy relationship with death. I
don't have a problem talking about it nor am I afraid of it. Being an Atheist and person deeply rooted in
science and the beauty of the earth, it's an inevitable ending we all will
undergo eventually. I guess that's why I
don't get religion, which is largely founded in the 'what if' and 'what happens
next'. I believe we'll end up returning
into the earth, from which we came. Some
believe there's a magical place they are working towards where they will be
reunited with loved ones. I believe that
as well, but back in the ground. I am
comforted by this simple principle just as others are comforted by their hopes
of being worthy to reach a promised land. Having said all that, it doesn't mean I don't
value life. And that's what's so crazy
about looking to end my life one minute then fighting for it, so to speak (and
literally), the next. But that's what
happened.
It was
early August of 2016 when I received my Bipolar II diagnosis and was put on the
lowest dosage of Lamictal (after trying several other medications that made me
worse). Almost immediately, I felt the
best I ever had, feeling clear-headed, balanced and happy. I couldn't believe how one tiny pill was capable of
changing my life so radically.
Weeks went by and my closest friends and I were fundraising for the
American Foundation for Suicide Prevention's 'Out of the Darkness Walk'.
Out of some 700+ participants, I was consistently #4 and the team hovered
around #5 out of 300+ teams in the amount raised. I had unbelievable support from my friends,
family and Facebook family. The walk was
August 28th and I was so proud of what we had accomplished for the cause. I was asked to be one of three top fundraisers
to release the white doves at the starting ceremony. The sun beating down, it was ungodly hot and
although it was only a 5k walk, we barely made it. That week, I noticed a rash starting on the
back of my neck, but figured, working outdoors, that it was a heat rash. After it wasn't going away, I consulted my
doctor, a dermatologist and my psychiatrist who prescribed the medication. The rash spread and I started to get inflammation, 100+ degree fevers, chills and
sweats. With a Black Box Warning on
Lamictal, even with a 1 in 10,000 chance of having a severe reaction, we were
sure that's what was happening and I was immediately taken off the drug. On a particularly hot and humid night early
September, I admitted myself to St. Clair Hospital, clad in sweat pants and a
hoodie, so cold I had the hood up. I was
quickly admitted, telling them what I thought was happening. After being seen
by several doctors and put on Tylenol to control my fever, along with about
$40k worth of tests, they had no idea what I had, despite me telling them. In fact, they gave me a dose of the
medication which, I'm sure, only made it worse.
After spending a few days in there and only given Tylenol, I decided I
could do that at home myself, thinking it would subside. So I went home and had several days and
nights of fevers, etc. before realizing that it was only getting worse. I had to check myself into another
hospital. A better hospital.
Several
days at UPMC Shadyside, I was assigned a PCP that figured out that what I had
was D.R.E.S.S. Syndrome. It's caused by exposure to a
certain medication that results in a rash, fever, inflammation and/or failure
of internal organs, usually several weeks after taking the drug. Being a fairly rare situation, there's not a
lot of information on it, which made diagnosis so difficult, as well as
treatment. Essentially, the residual
chemicals from the medication had my immune system attacking itself. By this time, my hands were inflamed and
covered in rash, as well as most of my body and the concern was that I would
get Stevens-Johnson Syndrome, a condition where your layers of your skin
literally fall off. The only known
treatment was high doses of steroids, and I was put on 80 mgs of
Prednisone. Several days later, the
rashes subsided, as did the fevers and inflammation and I was sent home. With a 1 in 10,0000 chance of having this
reaction, there was also a 1 in 10,000 that the rash situation would repeat
itself, and it did just that... I felt so lucky that I actually went out and played the lottery, with odds like that. Over the
next two months, it resurfaced 7 times, each a little different than the
previous but no less in intensity, in it's own way. After the last round, give or take, it
started to become incredibly itchy as the layers of protective skin my body
threw down shedded. I remember taking
3-4 oatmeal and oil baths a day, getting little relief and watching my skin float through the air like the dust coming from Pigpen, the Charlie Brown character. The symptoms weaned and I thought that was
it. I'll point out my previous
statement; 'how one tiny pill could change
my life so radically'.
I was a few
weeks into my new job at Sheetz with only remnants of the rashes I had
endured. I was still on the 80 mgs of
Prednisone because every time we tried to wean me down in dose, I got another
rash. I had Moon Fascia, a condition where high doses of steroids alter the
Cortisol in your body, a hormone that is released from the adrenal gland to
increase blood sugar and affects the metabolism of fat, so my face was fat and twice
the normal size. Bloated and having to
shave my beard off for the job, I felt worse about myself... something I didn't
think was possible coming off of the rashes and shedding. It was around Veteran's Day and I was at work
and, being a physical job, I was having trouble walking and getting up after
stooping down. My legs felt weak and partially
numb, as did my arms. After trying to
ignore/work through it, I had to leave work and again returned to the
hospital. I was admitted immediately and
the numbness progressed quickly up my extremities. In a matter of days, I couldn't feel my feet,
legs, hands or arms, and I had feelings of numbness in my chest and random
areas of my body. I couldn't walk. After enduring every test under the sun,
being poked and prodded and seen by over 10 specialists, I was diagnosed with
Guillain-Barre Syndrome, an auto-immune disease where your body literally
attacks itself, seeing your own organs as the enemy. The residual chemicals from the medication
had my body eating the myelin from around my nerves in my extremities, exposing
them, resulting in unbearable pain and numbness. I was fortunate to have gotten the peripheral
type instead of the internal type that shuts down your internal organs and you
are bedridden for a year or more, intubated because you can't breathe on your
own and are paralyzed. They upped the
Prednisone, thinking that it would help, but it didn't. They decided to try
plasmapheresis, a process where by they intravenously filter out the antibodies
that attack the immune system and replace it with good plasma, similar to
kidney dialysis. After 5 treatments, I
began to regain enough feeling that I was able to walk with a walker, but was
very unstable. After several weeks in
the hospital, I was sent to rehab in another hospital, learning to adjust to
the numbness in my legs and having to learn to walk again (using a walker), along with regaining some of
the motor-skills in my hands. After a
week or so, I checked myself out and took on my own rehab at home. Concerned about taking care of my dog,
Cooper, and the basic daily essentials of taking care of yourself, I remember
climbing up and down the stairs on my hands and knees like an animal. Doing the most simple things were so
difficult, but I was very fortunate to have my friends doing things for me as
well as my landlord, who had been taking care of Cooper when I was in the
hospital as well as when I got out.
Unbalanced, dizzy and trying to manage on my sea-legs, things seemed to
be looking up as I got used to my 'new normal'.
I'll, again, point out my previous statement; 'how one tiny pill could change my life so
radically'.
It was a
few weeks out of the hospital, mid-December.
As I said, doing the most basic task was really difficult and tiring and
I was always dizzy. I was sleeping so
much, exhausted. I would get up long
enough to make it down the stairs on my butt to feed and take Cooper out before
I had to turn right around and go back to sleep. This went on for several days. I was feeling chills, sweats and a high fever
for several days and began experiencing brief periods of blacking out, one
after another. I was making my way
downstairs to let Cooper out and blacked out, falling back onto the couch. I got up and made it outside and was watching
Cooper go to the bathroom and a minute later, I had fallen face-down in the
yard, unconscious. An undetermined time
later, I awoke to Cooper licking my face.
I was able to drag myself onto the pavement, not knowing where my
glasses were. I called my landlord (who
lives on-property) and told her that something was wrong and that I needed her
to take me to the hospital. She came to
the driveway and helped me up and I made it into the house and up the
stairs. I was taking care of a few
things on my desk and pulling things together to take to the hospital when I
collapsed on the bed on my back and proceeded to black out again. I woke, realizing that I had lost control of
my faculties and urinated on myself.
Fortunately, it didn't go through my bed and I managed to strip the bed,
pack my bag, take care of the dog and take a quick shower before heading back
downstairs to meet my landlord who then drove me to the hospital (December
19th).
I went back
to UPMC Shadyside, to the emergency room.
As I sat in the waiting room, my condition got worse rapidly. I was having a hard time breathing and became
delirious. I was admitted immediately. On my first night, they tried to put a PAP machine on me to help me breathe, which only made me more anxious (along with my nurse, whom I referred to as Nurse Rachet). My friend, Dennis, came in after I texted him to "bring the police and please get me out of here". What happened after this, I'm not sure, as I was in and out of consciousness, don't remember and experienced what is known as ICU psychosis (which I will go into in the next post). At some point, they put an external pace-maker on me to try to control my heart but my condition worsened. I guess they realized that I was going to die, and as a last ditch effort, they transferred me to UPMC Presby, where they quickly hooked me up to an ECMO (ExtraCorporeal Membrane Oxygenation) machine. The machine drains the blood from the vein, adds the oxygen and removes the carbon dioxide, warms the blood and then returns the blood to the artery and “pumps” the blood through the body. This method allows the blood to “bypass” the heart and lungs, allowing them to rest and get better. My friends were informed that I wasn't going to make it through the night and they all gathered expecting the worse. Most people put on ECMO are unconscious, intubated and fed through a tube, but I was an anomaly in that I was awake, breathing on my own and lived for meal time, of which I would sit up and feed myself. This is unheard of and, in fact, I was the only one in the ICU that was awake and eating... making me the only one that dietary would bring a tray up to (resulting in nurses and doctors walking by my room so surprised. I had several ports on my body, including a cannula, which is an apparatus that was attached to my leg in my groin that allowed access directly into my vein to manage my blood. Unfortunately, I had to lay on my back for weeks while they kept this thing in place, but it still leaked and had to be changed several times, a painful process of tearing off bandages to get at the openings.
Throughout the 8 days on ECMO at Presby, I was severely hallucinating situations that weren't happening in my room and wasn't getting any better. After a visit from the hospital liaison person who informed me, without any prior notification from my doctors, that I was going to need a heart transplant and probably would need an LVAD (left ventricular assist device (that pumps blood when your heart isn't strong enough to do it any more) hooked to my hip... and a situation where they heated my blood too much, I had an anxiety attack that persisted through the night. Finally, they had to intubate me and I don't remember much after that. I had a severe paranoid hallucination when I was passed out, so when I woke the next day, I was confused, disoriented and couldn't wait for someone to get the tube out of my throat. After trying to communicate with the nurses (while they had me restrained), they finally undid the tube and I cried, I was so happy. After that, and still not improving, an odd but lucky thing happened... my insurance was to expire in a few days and I had to go on another insurance plan that required me to be transferred out of that hospital to Allegheny General Hospital, into another healthcare system. In hindsight, this saved my life, although I had my doubts as to whether I was going to live through the ambulance ride over, especially after the paramedics, while hooking up my lines, injected too much of something in me that almost gave me a heart attack. On top of that, when I got to the hospital, the ICU nurse, Ashley, that was checking me in and hooking me up talked a bit like a valley girl, and I thought to myself... this is it, I'm done. Three minutes later, I learned a valuable lesson... don't judge a book by it's cover. She turned out to be amazing, as I laid there dumbfounded at that difference between the care that I received in the first 10 minutes at AGH as compared to Presby, where I had just been. Within days, they started weaning me off the ECMO and my heart rebounded from around 5% ejection fraction to around 45% (a normal range is around 55-70%). After I was put on dialysis for a few days to kick-start my kidneys, I was finally released on January 9th. It was decided that home healthcare and rehab was the best course of action. I had a nurse come several times a week to check my vitals and did self-rehab, trying to walk after weeks of laying in a bed, muscles weak and still dealing with some numbness from the Guillain Barre from months prior.
For fear of losing my job, I pushed to get back to work at Sheets after being off work for months, returning February 24th. I was still wobbly and had some mobility issues and was on a ton of medications. A week or so later, I had a bout of Pityriasis Rosea, another rash, as I feared the rashes were going to start again. Harmless, it remedied itself and went away, just in time for a bout of the Shingles, another auto-immune disease. Fortunately, it wasn't as bad as I thought it was going to be and it quickly went away. Now, I am left with some shortness of breath sometimes, some residual numbness in my feet that will most likely be irreversible and Rheumatoid Arthritis, yet another auto-immune disease. Throughout the process, it was found that I have Hypertrophic Cardiomyopathy, a condition where a portion of the heart become thickened and makes it more difficult for the heart to pump blood. It makes me at risk for heart failure in the future. I am also prone to other auto-immune diseases going forward since my immune system was compromised.
All-in-all, considering the ride that I have been on for the last year, I am considered a miracle, since it could have been much worse. In total, I had at least 15 doctors working on my throughout this and umpteen nurses and medical professionals. An Atheist, I'd like to say that someone upstairs was looking out for me but I am resolved to thanking science, medicine, an incredible medical team and the well-wishes, energy and help of so many friends, family and acquaintances. Still, who am I to question the forces that surround us?
I wasn't supposed to make it, but I did, which gives you a different perspective on life. I wish I could say that it woke me up and I am pursuing the career of my dreams or living life to the fullest, but I'm not. I am, however trying to be more kinder to my body, having recently started working out again and getting back into shape to be healthier... I am trying to choose a career path that isn't so physical... and I am trying to spend more time with my friends and family, without whom I would not be here. I'm reminded of the line from Poltergeist.... "come towards the light, Carol Anne"... not today, Satan... not today.
How one tiny pill was capable of changing my life so radically...
