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Today’s introduction is about a rather unique PH patient.
From his medical journey to how he chooses to live his life and dedicated
himself to the PH cause, Joshua Griffis brings something special to our
community.
Joshua’s journey with PH officially began in 2010. For some time, he had been experiencing shortness of breath, extreme fatigue, and general weakness. He was working as a corrections officer in a jail at the time, and one day after running to break up a fight between inmates, he blacked out.
However, it was really the fatigue that first led Joshua to seek treatment. Like so many patients, he was experiencing a feeling of being extremely run down, and unable to garner his energy. The doctor he saw wanted to rule out pneumonia, and it was during the chest x-ray that aortic aneurisms were discovered.
Joshua’s journey with PH officially began in 2010. For some time, he had been experiencing shortness of breath, extreme fatigue, and general weakness. He was working as a corrections officer in a jail at the time, and one day after running to break up a fight between inmates, he blacked out.
However, it was really the fatigue that first led Joshua to seek treatment. Like so many patients, he was experiencing a feeling of being extremely run down, and unable to garner his energy. The doctor he saw wanted to rule out pneumonia, and it was during the chest x-ray that aortic aneurisms were discovered.
Initially scheduled for corrective surgery, the doctor
wanted an echocardiogram prior to the procedure. It was then that the extreme
elevated pulmonary pressures were found. The doctor called and told him he had
pulmonary hypertension – and that he had perhaps six months to live.
The cause of these aneurisms which kicked everything off is still somewhat uncertain – rare diseases such as HHT and Loeys-Dietz syndrome have been tossed around, but a solid diagnosis continues to be elusive. Whatever the underlying cause, this much is certain, Joshua still has severe pulmonary hypertension.
The cause of these aneurisms which kicked everything off is still somewhat uncertain – rare diseases such as HHT and Loeys-Dietz syndrome have been tossed around, but a solid diagnosis continues to be elusive. Whatever the underlying cause, this much is certain, Joshua still has severe pulmonary hypertension.
Instead of surgery, Joshua found himself undergoing a right
heart catheter. He was immediately admitted to the hospital and started on
Flolan. However, before discharge, the doctors elected to try just oral medications,
starting with Adcirca.
As with so many PH meds, the side-effects were intense. Experiencing extreme headaches and heart palpitations added to the breathing challenges that were already present. Eventually, Sub-Q Remodulin was added, and finally IV Remodulin was settled on.
Fast-forward to the summer of 2012 and Joshua was presented with a unique opportunity. He applied for a job at the Pulmonary Hypertension Association and was selected, becoming the first full-time employed PH patient at PHA, and is currently the National Support Group Coordinator
I talked with Joshua about his experience there. What’s it like signing 10 – 20 condolence cards per week for patients who have passed from the disease we share? What’s it like to experience that kind of emotion, and to interact so personally with the ups and downs that come with this disease? He stresses that finding outlets are important, for him: reading, writing, and the support of close friends and family being chief among the strategies he draws on.
As with so many PH meds, the side-effects were intense. Experiencing extreme headaches and heart palpitations added to the breathing challenges that were already present. Eventually, Sub-Q Remodulin was added, and finally IV Remodulin was settled on.
Fast-forward to the summer of 2012 and Joshua was presented with a unique opportunity. He applied for a job at the Pulmonary Hypertension Association and was selected, becoming the first full-time employed PH patient at PHA, and is currently the National Support Group Coordinator
I talked with Joshua about his experience there. What’s it like signing 10 – 20 condolence cards per week for patients who have passed from the disease we share? What’s it like to experience that kind of emotion, and to interact so personally with the ups and downs that come with this disease? He stresses that finding outlets are important, for him: reading, writing, and the support of close friends and family being chief among the strategies he draws on.
While Joshua is already dedicating his life to the PH cause,
this past fall he took it up another notch. The Race of Our Lives Campaign
has launched, and four women formed Team Phenomenal Hope to cycle 3000 miles
across the nation. In his own way, Joshua is joining them.
Inspired by what the team will accomplish and experience, he has created the PH Peddler in an act of solidarity. Launched on September 9th, 2013, he too will cycle 3000 miles, spread over the months between his start date and the race itself. The plan is to cycle a certain number of miles per weekday, with weekends either off or for make-up time in case of illness or set-back. With PH, we always have to have a contingency plan.
The goal – to raise up to $50,000 towards PH research, and to engage people at the community and corporate levels in meaningful ways. There has been a multistage roll-out, starting with social media on Facebook and Twitter and now it is time to take it to the next level and find corporations willing to join the cause.
Inspired by what the team will accomplish and experience, he has created the PH Peddler in an act of solidarity. Launched on September 9th, 2013, he too will cycle 3000 miles, spread over the months between his start date and the race itself. The plan is to cycle a certain number of miles per weekday, with weekends either off or for make-up time in case of illness or set-back. With PH, we always have to have a contingency plan.
The goal – to raise up to $50,000 towards PH research, and to engage people at the community and corporate levels in meaningful ways. There has been a multistage roll-out, starting with social media on Facebook and Twitter and now it is time to take it to the next level and find corporations willing to join the cause.
Joshua says he feels blessed that he can do this, although
it is not without challenges. As he wears a continuous infusion pump, he has to
be careful to not tug the pump, open the site to infection, or even over-exert.
Pacing and sometimes taking breaks mid-ride are key.
Following
the PH Peddler on Facebook gives you a glimpse into this journey. Miles
covered, feelings as he rides, and if you are paying attention…sometimes
inspirational quotes instead of miles. Why? Because when a PH patient gets sick
or travels, or overdoes it or just wakes up “off”, everything can come to a
halt. The PH Peddler has had a few unexpected breaks as of late – actually, not
totally unexpected, given the severity of the disease and reach of this
project.
But this is Joshua – given six months to live three years ago, facing multiple critical illnesses, and experiencing things that would shut most people down, he could be sitting at home having given up. But instead of giving in, he bounces back every time, dedicates himself to the cause every day, and is impacting people around the country because of it. There is little doubt the Peddler will be back on the bike and more than make up for lost time in the future.
Follow the Peddler on Facebook HERE
And on Twitter HERE
If you’d like to get
involved in the Race of Our Lives in your own act of solidarity, there are many
ways to do so, and they don’t have to involve a bike. Visit http://phassociation.org/RaceOfOurLives to learn more.
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