Mark Porter, 49, lives in Rexburg, Idaho, with Erin, his wife of 26 years. They have three sons, Colton, Carson and Caleb. Mark owns Porter’s Office Products and enjoys working out, skiing and water skiing. He originally shared his story in the winter 2022 issue of Pathlight, the Pulmonary Hypertension Association’s member magazine.

By Mark Porter

In July 2020, I started to feel short of breath. I was 46 years old and considered myself to be in shape. I had been exercising and weight training consistently four or five days a week for 15 years. My primary care doctor prescribed an inhaler and lung steroids to help my breathing.

By October, the treatments weren’t providing any relief. In early November 2020, I developed a limp and couldn’t figure out why my right calf was swelling. By Thanksgiving week, I couldn’t walk.

After trying a heating pad and a TENS machine, I consulted the internet, which told me I had blood clots, and immediately made an appointment with my doctor.

My doctor examined my right calf and ordered an ultrasound at the local hospital. He asked me to come back to his office at 2 p.m. to review the results. I left his office and directly went to the hospital for the ultrasound.

The technician could see something between my knee and my ankle and called my doctor. Two hours later, I had a CT scan. The administering nurse told me to go back to my doctor’s office, about two blocks away, to discuss the results.

When I went back, the doctor was out for lunch. I went home to change and eat before returning for my original appointment at 2 p.m. As I sat down to eat, my doctor called my cell phone in a panic, asking where I was. I told him I was at home. He asked my wife to immediately drive me back to his office to discuss the CT scan.

While waiting in the exam room, my wife and I could hear a conversation my doctor was having on the phone. He was letting a hospital on the other line know that I was stable and ready to be transported. Panic set in for my wife and me. We were hearing a one-sided conversation and had not yet discussed my results.

Identifying blood clots

Finally, my doctor came in. The CT scan revealed a large deep vein thrombosis in my right calf from my knee to my ankle. More alarmingly, the scan showed a large embolism in my pulmonary artery.

I was told to immediately go to a hospital 30 miles away that could handle any embolism complications. The hospital put me on blood thinners and medication to dissolve the clots.

The nurses were surprised to see how “young” I was with the condition. Many doctors came in to ask what I had done to cause the clots. They were shocked when I told them nothing.

I was released the evening before Thanksgiving and put on Eliquis to dissolve the clots. I was told I would be on the medication for six months and be back to normal within a few months.

By December 2020 and into January 2021, I began to feel a bit better. By February 2021, I was weight training again and skiing some. I still felt short of breath, but not as bad as before. I figured it was part of the road to recovery. By summer, I felt like my recovery had plateaued.

In August 2021, I developed chest pain, shortness of breath and fatigue. I thought I had another PE. My doctor ordered another CT scan on my right calf and a stress test. The scan didn’t show anything new, and my heart looked fine. The doctor said my chest pain might just be acid reflux. I knew what acid reflux felt like, and this wasn’t it. However, I was cleared to ski and perform normal activities.

I went on a ski trip before Christmas 2021. During the trip, I struggled to breathe while skiing. By the last week of December, my chest pain was unbearable. I saw another doctor as mine was on vacation. After reviewing my previous testing, they referred me to a cardiologist.

In January 2022, I saw the cardiologist. He ordered blood work to find the reason for my initial blood clots. He also ordered several new tests like a V/Q scan and heart catheterizations. I was put back on Eliquis. After undergoing additional testing and describing my symptoms, I was referred to a pulmonologist who works with doctors at University of California San Diego.

CTEPH diagnosis

In February 2022, I met with the pulmonologist and was diagnosed with chronic thromboembolic disease and was developing chronic thromboembolic pulmonary hypertension.

Finally! I had been given a diagnosis of my symptoms and a plan to address it. I was so relieved when I received a diagnosis. My symptoms were real, and the doctors were there to help. The pulmonologist said he would send his referral to UCSD that week. I was told to stop weight training and to only lightly exercise.

In May 2022, I received a call from Nick Kim, M.D., at UCSD. We talked about my symptoms and how I had been reduced to working two or three hours a day and sleeping two or three hours each afternoon.

Dr. Kim said my test results weren’t as bad as others he’d seen, but he wanted to schedule evaluations at UCSD. He said it could take 30 days to schedule the appointment because of insurance red tape, but help was on the way.

The 30 days came and went. I didn’t hear anything from UCSD. In July 2022, I called to check on the status of my insurance and schedule my visit. With one call, my evaluation was scheduled for Aug. 23 and my potential pulmonary thromboendoarterectomy surgery for Aug. 30.

My wife and I drove 14 hours from our house in Idaho to San Diego. We didn’t know whether I would be getting the surgery or when we could leave.

Possible setback

I started my evaluations as scheduled and underwent many of the same tests I had in January. On Aug. 25, I met with a clinical doctor who said my numbers didn’t look bad and that my symptoms shouldn’t be as severe as they were. They said they would present my tests results the next day to confirm whether I was eligible for surgery.

This was the lowest point in my journey. I had gotten this far to be told my numbers don’t match my symptoms and that there was a chance I wouldn’t be recommended for surgery. I felt helpless. It was a long 24-hour wait.

On Aug. 26, I received a call that I was scheduled for surgery on Aug. 30. I was so grateful and overwhelmed.

PTE surgery

The day before surgery, I arrived at UCSD for final bloodwork and met my surgeon, Michael Madani, MD, FACS. He was so reassuring and caring, and my wife and I were quickly put at ease about our concerns.

I told Dr. Madani that the clinic doctor had told me I might not be a good candidate. Dr. Madani assured me that I was. He had reviewed my information before I got to UCSD and knew the surgery was the right fit. That was even more of a confidence builder.

On Aug. 30, I had my PTE surgery. Afterward, Dr. Madani said the surgery was successful but there was much more residual clotting in my lungs than the testing initially indicated. My entire right lung and most of my left lung were full of clots.

Over the next couple of days, Dr. Madani regularly checked on me. He said my heart appeared similar to that of a teenager’s. That skewed some of my previous test results as my heart wasn’t typical for someone of my age.

Ongoing recovery

I remained in the ICU until Sept. 2, when I was moved to general care. An echocardiogram a week after my surgery showed inflammation around my heart. My medical team told me that was normal, and I was scheduled for another echocardiogram a few days later to see whether the inflammation had subsided.

My healing progressed well over the next week, and I could take several walks a day. My second echocardiogram showed the inflammation around my heart had increased slightly. The doctors were concerned, but I was discharged and was asked to stay in the area until follow up tests could be performed the next week. On Sept. 12, I was cleared to go home.

As of Sept. 30, 2022, I completed my second week at home post-surgery and noticed a big difference in how I feel.

I’m so glad I continued to fight to have my appointments scheduled and never gave up. I have fully recovered from my PTE surgery and consider myself fully healed from CTEPH. It was a tough journey getting to diagnosis and ultimately surgery, but I made it through with the help of my doctors, family and friends.

Now, I feel like a new person. I can do all the things I love without any limitations. I can exercise, play with my kids, travel, and enjoy life. I’m so grateful I had the opportunity to have this surgery and that it was successful. It gave me back my health and happiness. If you are suffering from CTEPH and you are a candidate for PTE surgery, don’t hesitate to go for it. It will change your life for the better.

Watch an interview with Mark Porter here.

Do you have CTEPH or know someone who does? Join PHA’s Facebook support group for people with CTEPH, those who’ve had PTE or BPA procedures, and caregivers.