Cousins Dancing on December 24th 1984, Age 2
My Mom tells me of the events and of the day that led up to my birthdate every year for past thirty-two years.
My parents had tried very hard to conceive me (My Mom took a fertility drug called Clomid) and found out they were successfully expecting on the first day of spring of 1982.
On November 2nd of that year at 12:42am I entered this world. It was a full moon. I was a healthy baby with a full set of curly black hair. I had no major health crises, except for jaundice that was successfully treated after birth and one of my legs was turned inward that was successfully reset and placed in a cast before the age of one.
Diving board with my cousins 1993 (approx.)
I was an only child until my teenage years. I kept busy and active with my parents and with my cousins of a similar age. A few of the very many activities I remember are hiking and rock hunting with my Dad, going for walks around town with my Mom, Aunt Penny and cousin Katie, playing at the playground for hours, tap dancing on our coffee tables, searching for dinosaurs with my cousin Ryan and choreographing different acts and having tea parties under the water like mermaids with my cousin Heidi.
I grew up into my teenage years with very little health concerns except for the usual childhood things. The only indication that something may have been wrong was that I was never much of a runner and struggled with the mile run every year in physical education. This though was thought to be due to my size as I was overweight. As a teenager I worked very hard to take off the weight – by watching what I ate and over exercising- eventually I was able to complete a mile run in under 7 minutes. Over exerting myself and minimal eating led to a fainting spell in 7th grade – in which I had an EKG done right afterwards and nothing atypical was found.
My Dad’s wedding 1998 Left to Right: My step-sister Amanda, Myself, My Dad who is holding my step-nephew Justin, My step-Mom Clara, My step-brother Lynnie, My step-sister Vanessa, My step-sister Leighanne
I remained active ; I awoke early in the mornings to baby-sit a neighbors child after they left for work at 5:30 in the morning, went to school, baby sat after school and also started working at a local convenience store as soon as I was old enough.
I spent my free time with friends making memories that I cherish until this day. I graduated from MVHS in 2001 and after trying out several different jobs – I became inspired to pursue a career in mental health after befriending a gentleman with Schizophrenia during my daily job duties at the Information Booth in Rumford, Maine.
Soon I started working full time at Richardson Hollow mental health services and later for OCMHS where I worked 45+ hours a week. At times I noticed I was having a hard time to breathe and my weight always continuously fluxuated.
Vanessa and Myself at Zumba 2010
I was diagnosed with a hormone imbalance PCOS and later in 2009 with diabetes after testing my sugar levels and finding that they were over 300 ( an average fasting blood sugar is between 70 and 100). I worked hard at trying to get my health back under control and started to walk and be active with my friends and family.
I was starting to complain more to my doctors that I was having a hard time breathing . I was a smoker and knew I had to quit. The doctors prescribed me Wellbutrin and I cut back on smoking and eventually was successful in stopping altogether. However I still could not breathe. The doctors surmised that it would take time for me to feel better as I was still overweight and had smoked for many years. I replied to them that I understood but complained that I was really struggling with losing weight as I was struggling to breathe during any form of exertion.
A walk with friends 2011
I recall not being able to keep up with them.
They blindly prescribed me albuterol inhalers and Advair and encouraged me to use them as prescribed. I did. I used them on my walks, I used them as I climbed stairs… they were never too far away and I used them the maximum amount of times allowed everyday. Meanwhile I tried to continue to my almost daily/nightly walks with my friends and my sister but lost the ability to talk to the them while we walked. I wondered how I could be this out of shape and felt aggravated that I could not keep up with them no mater how hard I tried.
I progressively got worse. I would struggle to breathe after climbing up stairs. My co-workers noticed and wondered if I was okay. I shrugged it off and said I was overweight. Sometime in July I spent the day with my Mom and the discussion of having grandchildren came up. I knew that I would need fertility treatment in order to have children, just as my Mother did. I also would need to be able to breathe better and my Mom had been noticing that I was breathing heavy often. I resolved to have a doctors appointment to address my breathing issue again before pursuing the possibility of having children. At the appointment they put an oximeter on my fingers and it beeped rapidly. The nurse had me sit down and instructed me to deep breathe. She watched the numbers rise and made note of the numbers as soon as the beeping stopped. She showed concern in her eyes but the appointment was unremarkable after that point and I went home (I do not remember the conversation but I think he was suggesting lap band surgery.)
My Oximeter
That weekend I was working overnights and I had heart palpitations while sitting on the couch waiting for morning to come. It felt like I lost my breath and could not catch it, no mater how hard I tried. When my co-worker came in that morning for shift change, I shared my concern with her and of the low oxygen reading at my previous doctors appointment. She had experience working for an oxygen company and shared with me what a normal oxygen range would be ( < 90% ) I wondered what my oxygen levels were – no one had told me at that previous doctors appointment – and I was not sitting around deep breathing everyday – so what could it be when I was actually doing things? After work that morning I went to the local drug store and picked up an Oximeter- I questioned if I should actually purchase it as it was around $34.00, but I followed through and bought it. That evening I went for a walk with my friend Bobbie. We had been staying on flat ground for our nightly walks as I struggled heavily with hills. I placed the Oximeter on my fingers and the reading was down into the 70’s.
Monday came and I called my doctors office to report my findings. They hurried to make me appointment for that day. I was happy that they were going to take me more seriously and expected that they would find out what was wrong and fix me. When I saw them that afternoon they wondered why I did not make a big deal of my breathing problems.
In my mind I thought I had – I also said out loud “I thought this was what thirty felt like.”
They walked me around the office to see for themselves, set up home oxygen and ordered tests like CT scans, x-rays and bloodwork to figure out what was going on.
No Answers today – a few more tests to get done as soon as they are authorized by my insurance. Maybe answers on Friday? On Oxygen temporarily while waiting for answers. I am looking at this positivly because maybe someday I will be able to breathe again like Normal!!! August 20, 2012 · Rumford, ME ·
I called into work and hesitantly let them know that I would not be in for my shift and was not sure when I would be able to come back. I waited impatiently at my house, while adjusting to using the oxygen equipment. I remember my husband of the time wondering out loud that perhaps I had cancer. The doctor called the next day and said he could not be positive without further exam but suspected that I had a condition called Pulmonary Hypertension. I felt relief that it was not cancer – but I did not know at that time that this was just as bad.
“I never wished for a Doctor to be wrong about something more then I do now” August 27, 2012 · Rumford, ME ·
Cupcake Bouquet I made for my co-workers at OCMHS
He shared that I would have to go and see a pulmonologist and that they would make thereferral. I agreed. I am sure he explained vaguely what Pulmonary Hypertension was but I do not recall this conversation. What I do remember is googling it and reading about this non-curable deadly disease that would also hinder any hopes I had of having children of my own. I joined support groups on Facebook to learn more and I cried for days. I took a medical leave off from work and made my loving co-workers cup cakes – for their understanding.
It would take weeks, which seemed like eternity when you are waiting for answers, to have appointments with doctors. I started to see the pulmonologist that my doctor referred me to but after talking with other patients with PH, I learned that it was best to see a specialist. I learned that Pulmonary Hypertension could not be officially diagnosed until a right heart catheterization was done (this procedure is fully explained here : Right Heart Catheterization Procedure) Until then they ordered bloodwork to rule out things such as HIV , I had more lung function tests and more scans of my body. I had a sleep study to see if I had sleep apnea and discovered I did not, but that I had to sleep with oxygen at nocturnally. Everything else came back with no indication of what could be causing my Pulmonary Hypertension if that was in fact what I had.
On October 4th 2012 I had my RHC at MMC in Portland Maine. It was confirmed at this time that I did in fact have Pulmonary Hypertension. Also during the procedure they found that I had a hole in my heart called an Atrial Septal defect and this, depending on what school of doctors you speak with, was the culprit in causing the high pressures in my lungs. I would have to stay the night at the hospital in order to get a closer look by T.E.E. in the morning.
The brownie treat that a fellow PH patient brought to me after my procedure. What a sweetheart!
Survived the tee ..big hole in heart.. One more night here… Now to eat and have the special treat from Braden .. The biggest sweet heart ever!!! Lots of love… October 5, 2012 · Westbrook, ME ·
Now that it was discovered that I was born with a broken heart more doctors were added to my team. They had a pediatric cardiologist from Boston come in and talk with me. They explained that it may be possible to repair the hole in my heart in the future and what procedure they would use would depend on the size of the hole in my heart. They further explained that I would need to treat my Pulmonary Hypertension first and bring down my pressures enough in order for this hole to be safely fixed, as it was now the hole was actually helping me by being a release valve for the high pressures in my Pulmonary Arteries.
At the beginning of November just after I celebrated my thirtieth birthday (In the most wonderful of ways!) I started taking Tracleer for Pulmonary Hypertension. The medication took time to help but it eventually did make a difference. I made the best out of my situation and took opportunities that I would not have otherwise had -I flew out to Texas ( My first flight ever!) for a market research conference held by a pharmaceutical company in March 2013. I also went on a road trip from Maine to Colorado with my cousin Heidi in July 2013.
Invisible Illness is a cruel thing, people think you can do more then you can actually… even yourself sometimes.
I adopted a vegan diet and made some very big changes to my life that I felt I needed to make. I have had some disappointments and set backs too. The doctors a year ago, deferred fixing my ASD, after my pressure lowered as it could worsen my condition. However my condition worsened naturally and now they are discussing a double lung and heart transplant. I still remain hopeful and I love life everyday , this news has been very difficult for me to process and I find myself tearful more and more. I thank goodness I have the family and friends that I do and I hope you continue to stick around and help me continue this #phight! To learn more about my adventures and experiences with this disease over the past three years, please refer back to the blog posts. I will be adding snippets in the course of the next several weeks.
Much Love – S.Myles
Team Smyles 
