Meet Kathryn
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.
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Thanks
Thank you for sharing your story. I gives me hope. I am stage 3 and just newly started on Medications. Still not able to do alot.
Thank you for the uplifting message!!! It is hard to imagine today, when it takes effort to fill my water bottle. I religiously have to have fluids, chronic kidney stones. Also battling RA and Fibromyalgia. I have days it hurts to have clothes on. I try to complete one cleaning task a day and leg exercises, when I can. I was dx’g around June. SubQ to IV Remodulin and it always has me sick ?. I pray for a day that I can get back to my old self.
I think we all need to share our stories, while they might have some similarities, the journey is as unique as the human population ..
I am so happy to hear you are living with PH and have reversed alot of the symptoms.
Early last month i had my oldestson early 40s in er a code was called on him that night not sure if its congestive heart failure hes not giving all his diagnosis A DAUGHTER DOCTORS has recently found a blood clot in her lungs.I MYSELF CANT SEEM TO GET RID OF CIGERETTE SMOKING ANOTHER daughter was threaten with a lung nodule i myself docs hasseen one these illness withmy kids has slowed my progress in getting further treatment prehaps a slowsuicide dicision since the other news occured or fear.
Thank you for sharing!
Thank You For Caring And Sharing These Most Motivating Stories.
Thanks for sharing! I love hearing other people’s stories of diagnosis and living with PH.
I was diagnosed in 2009 at the age of 22. Like you, it came out of nowhere. I had been training to run a half marathon, and one day I couldn’t do it, and then EVERYTHING became hard. I couldn’t walk up a flight of stairs without stopping. I had to sit down after jogging with a friend across the street to avoid traffic. I struggled carrying groceries to my car.
I thought I was just out of shape from falling out of the exercise habit, but when I went back to the gym, determined to remedy this problem, I passed out after 100 meters on the treadmill. Thankfully, my doctor thought my story was odd enough that he referred me to a cardiologist even though initial, standard tests came back great. An echo folllwed by a heart cath confirmed PH.
I was very sad at first about what the diagnosis meant for my life (declining health, IV meds someday, oxygen therapy, possibly a double lung transplant, and a shortened life expectancy). I was in college and had so much I wanted to do! And who would want to marry someone with the knowledge of a life that likely held those things?
But I took my new diagnosis and decided to be the healthiest version of me I could possibly be. Medications helped to stabilize my condition, and a couple years later, I biked across Kansas! The following summer I did RAGBRAI and biked the state of Iowa. They were exhilarating experiences I was so grateful to be physically able to partake in.
You look at live differently when things you love and often take for granted are threatened to be taken from you, and I siezed life with tenacity.
I met my husband the summer I biked Iowa, and he has been incredibly supportive through my disease. We prayerfully decided to pursue having a baby, a huge desire of my heart that’s definitely not encouraged by doctors for patients with PH. I started IV meds, and though this was a really long process, I’ll skip ahead to say that we have a beautiful baby boy who I suppose is technically a toddler now at 16 months. He brings us so much joy!
I didn’t let my diagnosis rob me of the life I wanted to live. I tell my husband frequently that I want to do the things I love, and live a life I love. Everyone’s going to die someday. I want to fill my life with the things I love.
If I had let my diagnosis tell me I couldn’t (especially at a time when I was physically feeling like I couldn’t), I wouldn’t have known the joy of biking a across two states or having a baby wiggle in my belly. There are still definitely some things I can’t do with this disease, but there’s a lot that I can, and life is so much more fun when I focus on that.
Thank you for sharing.
thank you for sharing a part of yourself with us. my hopes is someone will find it helpful to them with their journey with heart failure.
Hello i wanted to see how old were yall found out you were even sick. I was DIAGNOSED at 40 yrs CHD. MANY MANY SURGERIES BUT IM STILL HERE LOVING EVERYDAY!!
I have arteries blocked in legs and hurts to walk
I’ve had nine heart attacks and a sixway bypass and a lot of stents eight I think…..hate to say it but ready to give up
woke up on June 02 2018 unable to use my legs they seemed too weak forced my self to get out to back yard where neighbors were ‘ called my sons went to hospital ‘all kinds of tests; kept me over night sent me home with 2 wrong prescriptions; did not take; 7 months later saw the heart doc; he said i had a stroke back then doing fine ;biking .going to my gym’ GOD is good
I too have had many many health issues and on top of them I also was addicted to cigarettes not a good combination with cad pad hbp hc and copd I prayed for God to just take them from me, take the cravings from me .my doctor stayed on me about the danger of smoking and the effect it has on the body I KNEW ALL THAT but was helpless to quit one day I got up and went to an authorized vape shop (not those at the corner store) but a dealer in authorized vape supplies the shop rep explained to me the stuff they use in the kanga vape pen is made with 100% organic ingredients and the nicotine is not derived from tobbacci but it’s derived from eggplant ! See nightshade plants contain nicotine I was floored never had known this so I bought everything I needed to start a new life without cigarettes ….i am proud to say I QUIT and I am tobacco free ! And my doctor approves and agrees that vapeing is by far a better alternative than cigarettes if you stick with it you can quit too
Lots of different symptoms depending on your body.
Both my husband and I have Pulmonary Hypertension. He is 74 and I am 71. Our primary told us it doesn’t mean anything.
We are both active and never had a heart attack.
I’m going to my cardiologist in 2 weeks since I have mitral valve insufficiency. Does this make any sense? Is Ph the same as pah?
Thank you for your sharing. I have similar situation with you. Now I am keeping a good attitude to live every day.
Thank you for your concern and help
What symptoms depend on one’s own physical condition
Thank you for your willingness to come into my life and play the role of a friend. Maybe you are not the only best one, but you are the most wonderful one in my life!
Patients with high blood pressure should take antihypertensive drugs for a long time. The reason is that high blood pressure causes continuous damage to cardiovascular and cerebrovascular diseases. Moreover, the fluctuation of blood pressure caused by irregular use of antihypertensive drugs causes greater damage to cardiovascular and cerebrovascular diseases and is more likely to cause the occurrence of cardiovascular and cerebrovascular diseases.
Only long-term and regular use of antihypertensive drugs in patients with hypertension can effectively and smoothly control their blood pressure. It is better for hypertension patients to choose long-term antihypertensive drugs when choosing drugs, so that on the one hand, blood pressure can be controlled steadily for a long time, and on the other hand, medication compliance can be improved.
We patients with pulmonary hypertension should not give up and everyone around us will help us
I was diagnosed with pulmonary hypertension when I was 21 years old. The following are some of the nursing methods I share with you in the hope of helping you
(1) according to the general nursing routine of respiratory diseases.
(two) diet care to give high calorie, high protein, high vitamin diet, eat less gas producing food. In the late onset of right ventricular dysfunction, the intake of water and salt should be controlled to reduce the load of the heart.
Some time ago, I went to the hospital to visit a friend’s mother. Her mother was always in good health. However, for some time, she suddenly felt breathless, short of breath in her chest, and sometimes she felt dizzy. Friends have never heard of this disease before, do not know why will get this disease. I want to consult, what is the cause of pulmonary hypertension, what symptoms need to be paid attention to in life? This kind of disease feels close to oneself a little afraid.
Avoid secondary lung infections in your daily life. Get sick in time to seek medical treatment, do not delay, finally dragged into a serious illness is very troublesome. Eat healthy food. If the mild symptoms, you can take some western medicine to treat the symptoms, you can also take Chinese medicine to slowly recuperate, cure the root cause. Like the medicine of a few cure pneumonia for instance, strengthen exercise daily, can raise flowers and plants in the home, purify the air. Clean your home regularly and be sure to keep the air inside fresh to avoid lung infections
I was diagnosed with the disease in February this year. I am very scared. What should I do
I’ve been diagnosed for 2 yrs almost now. My legs weakening and throbbing, spasms like, shortness of breath, light-headed was my chief complaint. Orthopedic doctor wouldn’t touch me due to the massive swelling in both legs.. cardiologist diagnosed me through 6 weeks of cardiac tests then bilateral heart catheter. Taking 13 pills between PAH meds, diuretics, diabetes, hypertensive, pain. My legs are worsening now, severe weakness, lungs are better, right-sided heart failure is resolving. No one understands really why my legs are so affected.. actually it’s almost all of my foot now.. painful… they are now considering tissue or an autoimmune disorder…meanwhile I’m mostly wheelchair bound, can walk 20 feet with my cane.. no answers yet.. most doctors say the legs really are not part of PAH diagnosis..just confused, frustrated, emotionally exhausted… AM I THE ONLY ONE THIS WAY???? Help please