Kathryn has been living with Pulmonary Arterial Hypertension (PAH) since 2006. Though it’s a serious condition, she doesn’t let it slow her down – not even on the tennis court! We asked Kathryn to share her story with our app.
Here’s what she had to say:
What are you most passionate about?
Other than my children, my grandchildren, and my husband, I am most passionate about playing tennis. I love playing tennis and I do believe that tennis has helped me through all of my trials with pulmonary arterial hypertension.
When did you decide to get medical help?
I was playing tennis in June of 2006 and suddenly I started to run for the ball and couldn’t. My legs wouldn’t move and I was terribly short of breath. So, I called my doctor and said, “Something is really wrong.”
He first did a pulmonary scan to find out if I had a pulmonary embolism and then he said, “Let’s do an echo-cardiogram.” It showed that I did have pulmonary arterial hypertension. But they did a right and left heart catheterization the next week to confirm it and it was there.
Who is your greatest source of support?
My greatest support has been my family. They’ve been right there with me the entire time no matter what through all of this. My friends also. My tennis friends, my church friends, my neighbors. Everyone has been extremely good about supporting me and helping me get wherever I need to get when I couldn’t drive or couldn’t take myself someplace. It’s been wonderful to have the family and friends to be there for me.
Do you have advice for others living with PAH?
My advice for anyone who is newly diagnosed with pulmonary arterial hypertension is to get to a specialist who deals with this disease. 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. So, it’s very important to see a specialist.
It’s also very important to be compliant and to do whatever it takes. If you have to go on IV drugs, if you have to do sub q, or need to take oral medicine, keep trying until you find something that works for you.
Don’t give up! The best advice I was ever given was, “If you go 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’s happened with me.”
Why share your story?
I’d like those who are very very sick with pulmonary arterial hypertension know that I was extremely sick with it too. A year after diagnosis I was given two months to live without a heart and lung transplant. But, we were able to find one of the IV medicines, wrapped it up very fast, and it saved my life. Then we were able to find another drug that actually helped get my life back and I was able to get back on the tennis court.
Just recently my report shows that I don’t really have signs or symptoms of pulmonary arterial hypertension right now. I’ve gone from being extremely sick with this, so sick that my heart was enlarged so much that they couldn’t even find the left side of my heart because the right side enlarged. I’ve been so sick with this that I was in severe congestive heart failure and looked like I was about seven months pregnant because of all the fluid build up in my stomach and around my lungs.
Now I am able to get out and do just about anything I want to do! I can’t climb mountains anymore, but I can certainly walk 2-3 miles on flat ground. I can play tennis for 2 or 3 hours at a time. All these things that no one thought was possible and 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.
Have you been affected by pulmonary hypertension or another health condition? Sign up to share your experiences with Health Stories Project!