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CTEPH Surgery Gave Me My Life Back

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My Life Is Now Open to the Possibilities of World Travel, Skiing, and So Much More

Posted by William Rosenau

It started when I collapsed

My work as a defense analyst typically involves frequent international travel, and it has taught me to expect the unexpected. But I never thought that a trip abroad would nearly destroy my health — and that a team of Temple cardiologists and heart surgeons would save it.

Around 10 years ago, I started feeling dizzy and fatigued all of a sudden after a flight home from Africa. I tried pushing through it, but the situation escalated when I collapsed at work and was rushed to the hospital. My doctors diagnosed me with chronic thromboembolic pulmonary hypertension (CTEPH), a rare condition where blood clots became lodged in my lungs and caused my blood vessels to get blocked with something similar to scar tissue. It turns out, my symptoms weren’t unusual. A lot of people who have CTEPH experience what I did – shortness of breath, feeling weak and exhausted, a pounding chest, and fainting.

My options for treatment were taking expensive pills or having surgery. I chose the medication since the surgery, pulmonary thromboendarterectomy (PTE), sounded overwhelming. Plus – who wants to have invasive surgery when a daily pill could be just as effective? But unfortunately, the medication didn't do a good job of getting my symptoms under control.

Struggling with CTEPH prevented me from doing the things I enjoyed most, like skiing. Dr. Forfia, a leading pulmonary hypertension specialist at Temple Health, helped me get the treatment I needed to get my life back.

Life with CTEPH

With CTEPH, I was able to walk on flat surfaces without too much of a problem, but the slightest incline would leave me huffing and puffing. Simple things I had taken for granted like walking my dog up hills in my neighborhood became challenging. Friends and family would comment that my face had a pale, ashen color. When I talked, you could actually hear a slight wheeze. The doctors told me that the scar tissue in my lungs was making it harder for my body to get enough oxygen, which put a strain on my heart.

I started to worry about traveling abroad. Would I be able to get the care I needed if something went wrong? I was determined not to let CTEPH totally control my life though, so I decided to try going skiing in the Rocky Mountains — an activity I always loved — with my wife and son. But the high altitude put such a strain on my lungs that I needed supplemental oxygen.

Eventually it got to the point where I was sleeping for 10 hours a day because I was so tired. My body was struggling, and I resigned myself to a life that simply wouldn't be as rich or full as it once was. It was hard to accept, but I tried to make the best of it. 

A chance at a cure

I was being treated at a D.C.-area hospital for an unrelated heart issue when I met a cardiologist who was consulting on my case. She noticed that the level of oxygen in my blood was alarmingly low. She said that this meant the medication I was taking for my CTEPH wasn't working for me.

The cardiologist suggested I meet with Paul Forfia, MD, at Temple Health. She told me that Dr. Forfia was one of the leading experts in treating CTEPH in the entire country and that he might be able to offer a solution that could get my condition under better control.

I jumped at the chance to get my life back and to begin feeling better, and I quickly made the trip from my home in Washington, D.C. to Philadelphia.

A life-changing operation

It wasn't until I met Dr. Forfia that I learned how dire my situation was. His team ran tests that showed that I was functioning on the capacity of less than one lung, which explained why I was so tired and breathless. I was told that without a more effective treatment, my life might soon end.

But there was a treatment that could help me. Dr. Forfia told me that I was an ideal candidate for PTE surgery to remove the blockages in my lungs. It would be a major operation, lasting 6 hours, and there were risks involved. However, Dr. Foria told me it was the most effective treatment for CTEPH, and it was the best chance at saving my life.

I was nervous about having surgery, of course. But both my wife and I had complete confidence in Dr. Forfia and his team. They showed me charts and images related to my condition and treatment, and explained exactly how the procedure would go. We felt like we were all on the same wavelength, and I knew I was in the best possible hands.

I had the operation in October 2020. The procedure itself went smoothly, and my recovery was, in a word, amazing. I noticed that I was breathing easier and had more energy just a day after surgery. I spent 5 days in the hospital before I had recovered enough to return home. Throughout my stay, the doctors, nurses, and staff at Temple were caring, gentle, and accommodating. (And I wasn't an easy patient… I complained a lot!)

While I had certainly expected to feel better after surgery, I didn't expect such a drastic improvement so quickly. Even Dr. Forfia and his team were impressed, and they had already helped more than 200 other people with the same treatment by this time. In fact, they said I was cured of my CTEPH.

William Rosenau

After PTE surgery, I was able to recover quickly after receiving personalized care from the Temple Health doctors and care team. Jogging down the street with my dog was something I could enjoy again!

Feeling like myself again

Before having surgery for CTEPH, I felt like an old man — always tired, weak, and worn out. Now I have my energy back, and I'm able to do everyday things like climbing stairs or walking my dog without struggling to breathe. I'm no longer wheezing when I talk, and my complexion looks healthy, not gray. And yes, I can even ski at 12,000 feet — something I'm looking forward to doing more of.

I'm also ready to get back to international travel. Being able to pursue these kinds of opportunities for my work once again – this time, without worry – feels freeing and exciting.

I'll have to take blood-thinning medication for the rest of my life, but that doesn't matter to me. This treatment was life-changing for me in the best possible way; there's absolutely no question. And I couldn't have done it without Dr. Forfia and the brilliant, dedicated team at Temple Health. They've made my life so much better — and hopefully a lot longer.

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