Playing tennis has always been important for me. I love the camaraderie, the challenge and the competition.

When I was diagnosed with PH, my physician at the time told me I’d never play again.

Today, my current PH specialist says tennis is an excellent pulmonary rehabilitation activity. I’ve learned to control my exertion levels, tying my shoe when I feel short of breath or taking deep breaths in between points. I’m able to use my oxygen concentrator by wearing it as a backpack and I have my drug pump in a fanny pack.

I have two tennis lessons during the week, a round-robin tournament every Friday and a Sunday game. In the spring, I’ll play on three tennis teams plus my Friday round-robin tournament.

Every time I’ve been hospitalized or undergone a setback, my first thought was: “When can I play tennis again?” I believe this saved my life.

Break point

In June 2006, I was playing tennis and ran for a ball. Suddenly, my legs wouldn’t move, and I was terribly short of breath.

I called my doctor after the match and said, “Something is really wrong.”

The next day, he used a pulmonary scan to check if I had a pulmonary embolism and then ordered an echocardiogram, which showed I might have pulmonary arterial hypertension. The next week I underwent a right and left heart catheterization that confirmed my PAH.

I was shocked. I had been so healthy. I avoided fried and sugary food, never smoked or abused drugs and led an active lifestyle. I didn’t expect to be diagnosed with a lung/heart disease out of the blue.

I remained calm and asked my doctor, “When can I play tennis again?” He said I would never play again. I responded, “Watch me.”

Peaks and ‘volleys’

My symptoms subsided for about three months with a calcium channel blocker, Lasix and warfarin. In September 2006 I went to the Mayo Clinic in Rochester, Minnesota, where the PH specialist added sildenafil, a vasodilator, to my medicine regimen.

When that regimen began to fail, I returned to the clinic in March 2007 in a distressed state. My doctor said it was time for the “big guns” — IV tresprotinil, through a Hickman catheter directly to my heart.

When doctors performed an echocardiogram during that visit, they couldn’t find the left side of my heart because the right side was so enlarged. I was in congestive heart failure and looked like I was seven months pregnant because of all the fluid buildup in my stomach around my lungs.

I began Remodulin that May, delayed because I had an abscessed tooth. In August, my dosage increased to 78 nanograms, and I began using 3 liters of oxygen per minute around the clock. I was told without a heart and lung transplant that I would die by the end of the year.

In November, my Remodulin dosage increased again. When went to the Mayo Clinic in Jacksonville the next month, the doctors told me I wasn’t a transplant candidate anymore. My medicines were working.

Until 2008, my PAH was labeled as idiopathic. I was diagnosed with sleep apnea and CREST syndrome, a less severe form of scleroderma. A few years later, doctors identified CREST syndrome as the main cause of my PAH and said the sleep apnea amplified my PAH symptoms.

When I was diagnosed with PAH, I used a BiPap for my sleep apnea to increase ventilation pressure because the CPap wasn’t strong enough. At times, I wake up because I can’t breathe, and my husband has to perform the Heimlich maneuver to push air up from my stomach to open my throat.

It’s terribly frightening. I’ve changed my routine just to be able to sleep comfortably. I watch my alcohol intake and weight, eat light meals at night and sleep on a wedge pillow. Sometimes I’ll stay up until 2 a.m. to ensure my food has digested properly, so I can feel safe to sleep.

Turning a corner

In November 2011, my Remodulin dosage decreased to 25 nanograms and I began the Tyvaso inhalation system. I initially inhaled nine puffs four times daily. But after six months, my puff intake increased to 12 puffs four times a day. Since switching to Tyvaso dry inhaled powder, an easier and smaller delivery system, I need only one puff four times a day.

My PH care team has adjusted my medications with my life. I now take 18 prescription medications to help with PAH symptoms and 10 medicines for hormonal balance, vitamins and allergies.

Through all of this, I always expected to get better. I have a strong faith in God, a supportive family, true friends and an excellent care team of PH specialists, cardiologists, rheumatologists, ENT, etc.

Shoulders to lean on

My greatest support has been my family. They’ve been right there with me, despite the obstacles thrown my way. My tennis, church and neighbor friends have helped me through whatever I needed. They’ve driven me places when I couldn’t drive myself. They’ve cooked meals for me when I was too exhausted. I can’t thank them enough for all they’ve done.

My advice for anyone who is newly diagnosed is to get to a specialist who deals with PAH. Not all pulmonary doctors, not all cardiologists and certainly not all primary physicians know how to treat this or have access to all the medicines you might need.

It’s very important to see a specialist. It’s also important to adhere to your treatment plan and do whatever it takes. If you have to go on IV drugs, undergo subcutaneous treatment or take oral medicine, keep trying until you find something that works for you. Don’t give up.

The best advice I ever receive was, “If you sit in a chair and wait to die, you will. But if you stay active and keep fighting this, keep finding out more information and doing everything you can, you’ve got a good chance of living a nice, healthy life with this.” And that’s what happened to me.

Spreading hope

Today, thanks to my treatment, I have few signs or symptoms of PAH. I can do just about anything I want to. I can’t climb mountains anymore, but I can certainly walk two to three miles on flat ground. I can play tennis for two to three hours at a time. All these are things that no one thought was possible.

I want people to know that you don’t have to give up with this disease. You don’t have to make it a death sentence. You just do everything you can to live with it and fight it. We can make this work. I keep telling people the goal is to stay alive long enough for them to find one more drug or one more treatment because we may find a cure for this in our lifetimes.