Convoluted, complex, devastating, tragic, challenging and inspiring were among the many terms which came to mind after reading how other pulmonary hypertension patients described their stories. This is a rare and exclusive group. One that deserves voices which resonate as a constant din for those who are in a position to impact the PH issue scientifically, medically, and legislatively. I hope my story can raise the volume, at least a little.
In retrospect, I recognize that the secondary pulmonary hypertension from which I suffer was the result of many factors, but most notably were the lack of affordable health insurance, medical unawareness (bordering on blindness), along with my own mistakes and denial.
I was awarded Social Security Disability as a young man in 2004. While SSA never seems to disclose a primary qualifying diagnosis, I was suffering from advanced spinal/neurological issues, along with what may have been the incipient cardio-pulmonary symptoms of PH. Prior to about 2002, I was engaged in difficult physical activity six days a week. But in 2003, I started to experience lower extremity edema, chest pain, periods of dyspnea, crushing fatigue, and, worst of all, episodes of syncope. I had lost consciousness walking down the street as well as in my home. It's just down, like a bag of cement. Little or no warning. Over a period of about three years, during different falls in various places, I broke my left arm at the wrist, fractured two ribs, lacerated my spleen and badly damaged both knees.
Because at the time I qualified only for our State Medicaid, my care was relegated to a nurse practitioner, under the ostensible supervision of a medical doctor. I saw him once. The nurse practitioner did her best. Meanwhile, I was diagnosed with mild COPD and arrythmia. I even had a heart catheterization, which found satisfactorily clear arteries but mildly elevated right heart pressures. I was advised by another physician, a pulmonologist, to consider PH. But the ever calm and rational cardiologist yelled at me over the phone, admonishing me for even bringing up PH. "You don't have pulmonary hypertension,” he screamed.
I was treated with steroidal inhalers, heart medications and diuretics, and continued to deteriorate. In 2005 I had arthroscopic surgery on my left knee. It seemed so successful that I was anxious to have the right one repaired too! It was more extensively damaged. I didn't get time for the right knee surgery.
In May of 2006 I experienced the lethal medical meltdown. It was called a "massive, bilateral pulmonary embolism". A horrific experience. Fortunately, after a night in our rural hospital's ICU, I was transferred to a large teaching hospital about ffifty miles north. There, as far as I can recall and reconstruct from reports, I was given nearly no chance to survive and my kids were prepared for the worst. The usual heparin, TPA and other clot busting drugs were not working. I had 90% blockage in the right pulmonary artery and 60% in the left. Not good news, but I was in and out of shock and had no clear concept of what was happening. I knew the unspeakable pain and feelings of drowning and projectile bloody noses. All those and other symptoms had my attention, but I cleared up long enough to realize that my vascular surgeon was asking me to give consent for more "extreme measures". Sign the form, Rod.
I did, but the alternative was death. After at least eight heart catheterizations and insertion of an IVC filter, I survived, in one form or another. Much collateral damage. But I actually heard the docs throwing around the "M" word as I started to emerge from the near death area about two weeks later. And we all know that doctors, as scientists, do not use the miracle word lightly, if ever. I sure didn't feel like any miracle at the time. To this day, I cannot forget the image of large blood clots floating around in my right ventricle and atrium. I'm told the largest are still there, waiting, like little time bombs.
Because I experienced massive lung and cardio damage, along with embolization to my legs, causing severe deep vein thrombosis, my prognosis was given in the area of two to five years. Combined with the now indisputable PH diagnosis, it seemed the fight for survival may have been futile. Whether my pulmonary hypertension was primary or secondary to the PE, I'll never know, and it matters not.
If I wish to continue watching my adorable granddaughters grow, I've got to muster the fortitude to deal with many serious medical issues, PH among them. Currently, I am not being treated by a pulmonary hypertension specialist. My pulmonologist seems to be handling things well for now. I do not have access to the doctors with the real hands-on experience. So, my current diagnoses include PH, DVT, cor pulmonale, loss of 65% of lung function, chronic thromboembolism, advanced DDD and serious chronic pain. I refuse to recite the entire list as I feel like a freak.
Treatments at this time include mostly the same meds with additional breathing rescue meds, night time oxygen, and, recently, involvement of a state-coordinated home health care agency. Sometimes, in my case, if feels like the doctors have maybe determined that additional treatments, especially invasive procedures, are not only very risky but perhaps superfluous. Denial or not, I do not accept the latter possibility. I cannot (yet) locate an orthopedic surgeon who will attempt to repair my useless and very painful right knee. I want better mobility!
My time has been reduced to good hours as opposed to good days. But that is plenty of time to make some noise on behalf of other pulmonary hypertension patients! The Congressional Representative from my district was Paul Gilmore. His sudden passing left a huge void with respect to advocacy. He helped me to monitor my application for social security disability. I had a good working relationship with him. I do not now his replacement, but I need to learn her name and maybe shoot off a few emails!
Perhaps like other PH sufferers, I've been told I have non-malignant terminal diseases. Speaking strictly existentially, is not life, by its' very nature, a non-malignant terminal condition? So onward I stumble through the maze with everyone else. Also like other PH patients, I intend to be around for awhile. But the quality and quantity of our lives does depend upon additional research, funding and awareness that we exist!
I pray that my story, only one more small star in a huge constellation, may perhaps help someone somewhere.
Thank you for taking the time to read this expansive tale!
Rodger E. Richardson