My Cure for CTEPH was the Best Christmas Gift

The first signs that something was wrong

I was on vacation in New York City when I first noticed I was having trouble breathing. I’m a fitness fanatic, so that got me worried. I had never experienced anything like this.

I’m from the Caribbean island of Grenada, so I went to a doctor in New York but nothing was found. I also saw a doctor when I returned home. But again, they couldn’t find anything. Something had to be wrong, but what?

Things gradually got worse over time. I kept having trouble breathing. After only 10 minutes of exercise, I got very tired. This wasn’t like me. Every test came back negative. Nobody could figure out what was wrong with me. I wondered if I would ever find out.

Good news that quickly turned bad

Since Grenada has limited medical resources, I returned to New York in search of an answer. It was there, in 2016, that a cardiologist diagnosed me with blood clots in my lungs. I finally had an answer! I was relieved to know what was causing my breathing problems.

The doctor put me on blood thinners to prevent more clots from forming, but there was bad news. Since the clots had been there for awhile, I had also developed severe pulmonary hypertension. That’s a dangerous type of high blood pressure that occurs in the lungs’ arteries.

The news got even worse. The combination of the two problems led to a life-threatening condition called chronic thromboembolic pulmonary hypertension, or CTEPH for short. This was causing the right side of my heart to fail.

I returned to Grenada and my health continued to get worse. By 2017 I could barely breathe. Walking 10 steps from my bedroom to my bathroom left me gasping for air. I couldn’t exercise anymore. I even had to stop working. It broke my heart not being able to talk with my 12-year-old daughter, much less care for her the way I was used to, without feeling winded.

I never gave up, but I began to think — what would happen to my daughter if I wasn’t there?

At that point, I was given less than 6 months to live. I was beyond scared. I didn’t want to die.

Traveling 2,000 miles to Temple

I mentioned that Grenada has limited medical resources. My primary care doctor is actually an ob-gyn from Virginia. She makes regular visits to the island to see patients.

During one of those trips, she met Dr. Pravin Patil, a cardiologist at Temple University Hospital. Dr. Patil also travels to Grenada to see patients in a clinic once a year. My ob-gyn told Dr. Patil about my situation, and he agreed to see me the next day.

That was the start of the miracle. There was hope!

Right away, Dr. Patil saw that I was in bad shape. He called his colleagues at Temple, Drs. Paul Forfia and Anjali Vaidya. They all agreed that I needed more advanced care than I could get in Grenada. They wanted to bring me to Temple.

What I didn’t know at the time was that Temple is one of the best places to go for a surgery called pulmonary thromboendarterectomy. Most people call it, ‘PTE surgery’. Only a few hospitals in the U.S. offer it. The doctors all thought I would be a good candidate for this surgery, which can cure CTEPH by surgically removing the blood clots from the lungs.

Temple coordinated all of my travel plans, and it wasn’t long before I was in Philadelphia. Since I was going to be there for awhile, they also arranged for me to stay at someone’s house through the non-profit Hosts for Hospitals program. My host and her neighbors made me feel like I was part of their family. I was grateful for their hospitality.

After running a lot of tests on me, my Temple team said that I was a good candidate for PTE surgery. I was nervous, of course, but I was excited that there was a solution to my problem. I was ready to be able to breathe again.

Receiving the best gift of all

On December 20, only 6 days after I arrived in Philadelphia, I had the PTE surgery at Temple. My surgeon was Dr. Yoshiya Toyoda, who I understand is one of the best in the world. I felt like a celebrity!

Everything went smoothly, and I was off the ventilator one day later and out of the ICU in 3 days. I didn’t have a problem being in the hospital during Christmas because I had received the greatest gift — a new life. Plus, the entire staff made me feel so at home. 

Ten days after my surgery, I was discharged from the hospital. I had to stay in Philadelphia for a few more weeks for physical therapy and monitoring. During that time I made a very fast recovery. It was amazing. I was thinking a lot about my daughter, because I wanted to be healthy for her.

At my host’s home, I was climbing stairs as easily as I did before I got sick. I could even walk to the bus stop with no problem. Very quickly, my blood pressure and breathing returned to normal levels. I couldn’t wait to go home to Grenada.

My long-lasting connection to Temple

My life has largely returned to what it was before I got sick. I’m back at work, I can exercise, work in my garden, handle any chores around the house and care for my daughter.

Someone looking at me today would not understand what I’ve been through. I still get bloodwork in Grenada and my ob-gyn follows up with me.

But Temple is still very much a part of my care. They get my test results, monitor my progress and follow up with phone calls. Recently I saw Dr. Patil during his yearly visit to Grenada, and he said I’m doing fantastic. My right heart function has gotten much better and I feel great.

I think my connection to Temple will be lifelong. I brought home a Temple T-shirt after surgery as a belated Christmas gift for my daughter. She told me she wants to become a pediatrician.

There is a lot of bad in the world, but Temple is making a difference. No amount of praise for my Temple team is too much!

Helpful Resources

• Meet Allison’s physicians: Dr. Patil, Dr. Forfia, Dr. Vaidya and Dr. Toyoda
• What you need to know about pulmonary hypertension and CTEPH
• PTE surgery: answers to some questions you may have