“If I didn’t advocate for myself and put matters in my own hands, I would still be suffering until this day.”
By Robert Stewart
On March 17, 2017, I could hardly breathe as I played my third day straight of tennis. My tennis partner thought I was having a heart attack. On March 31, I walked up conveyor stairs on a windy day for work and started coughing really badly for about an hour.
That year, I repeatedly was misdiagnosed. My face was gray from not getting enough oxygen. I coughed so much so that I got a hernia.
In March 2018, I had my hernia operation. Doctors diagnosed me with pulmonary hypertension (PH), fluid retention and kidney failure so I spent four days in the hospital. Doctors said I had a series of small blood clots in my lungs. They put me on Bumex and Eloquis. I lost 33 pounds after surgery.
Throughout 2018, I was under the care of a cardiologist and lung doctor. They tried everything they could with no improvements. I had kidney stones and passed out from lack of fluid and oxygen. Kidney failure occurred again.
By November 2018, I was frustrated because I thought I would have to live with this for the rest of my life. I did an internet search on PH and found the Pulmonary Hypertension Association (PHA). I called PHA and talked to PHA’s Mike Knaapen, who told me about in-person and telephone support groups that meet each month. He also referred me to Sarah Brackett, someone who had pulmonary thromboendarterectomy (PTE) surgery.
I talked to Sarah, who thought I should be on Adempus and said I needed to see a doctor who specialized in PH cases. It took me five weeks to get an appointment and another five weeks to see the PH doctor in May 2019. He mentioned Adempus, but said I needed to undergo many tests.
In September, my PH doctor said I needed a right cath procedure. In October, I had the procedure at Stanford Hospital in the Bay Area. The doctors put me on Adempus and said I was a good candidate for PTE surgery. Then I had to go to University of California-San Diego Medical Center for an evaluation. I drove to San Diego from the Bay Area and made it part vacation excursion.
When I got to the medical center, the nurse practitioner said I was very sick and should schedule the PTE surgery. I told my lung doctor my plans, and he said I was his most complicated patient. My PH doctor didn’t think my condition wasn’t that serious and asked me whether I was sure I wanted to have the surgery.
I scheduled my surgery for December 27, 2019, at UCSD. They did the PTE, plus a bypass-cabbage on one of my arteries. I had two massive blood clots that were 5 inches by 7 inches. Two of the doctors said if I hadn’t had the surgery, I would have died sometime in 2020. I was unconscious for two days and in the hospital for two weeks. The doctors said my surgery was successful and that I looked fantastic.
Three weeks after surgery, I am home, catching up on my sleep. I am doing lots of walking until I start my cardio rehab in three weeks. It’s nice to wake up with a 98 blood oxygen level.
In conclusion, if I didn’t advocate for myself and put matters in my own hands, I would still be suffering until this day.