My PH Story

Living On Oxygen for Life

While at the 2016 Pulmonary Hypertension International Conference in Dallas, TX on June 17 – 19, I met Steve Van Wormer, who helped create the PHAware Global Association. At the conference, he did interviews of PH patients to help get their PH Stories out to the public to raise awareness of this devastating and currently incurable disease. He asked me to do an interview. I tried my best to do the interview. He was SO gracious when my brain decided to blank out.. I explained that I write much better than I talk. The long term effect of high CO2 on my brain really has affected my memory and recall. Thank goodness for editing… and cut & paste. Hopefully, he can make something out of what I said.

For this reason, I want to get what I REALLY wanted to say here on my blog. Here we go!

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I'm aware that I'm rare. Rocco has now become PHAware. He's my PH Pup!

I’m aware that I’m rare.
Rocco has now become PHAware. He’s my PH Pup!

My name is Christine Liles and I have Secondary Pulmonary Hypertension. I was born with PH due to Congenital Heart Defects and Scoliosis that caused Restrictive Lung Disease. The doctors knew almost right away that I had Pulmonary Hypertension. The pressures were really high and since I was born in 1969, there were no PH medications or a course of treatment for this very rare disease. So, I grew up living with this disease taking Lanoxin for a short time to help slow my heart rate down. I was restricted from most gym activity because of the shortness of breath.

My parents & sisters were great at providing me with as close to a normal life as possible. Before the age of 10 years old, if my sisters bowled and played baseball in leagues, I was right there with them. Granted, I was much slower but I did it even though the doctors kind of frowned upon it. At the age of 10, my parents finally talked my Cardiologist into performing a corrective surgery on my Ventrical Septal Defect in my heart. My Thoracic & Cardiac doctors, both, didn’t want to do it because they didn’t think I had a chance to make it off the table. It was my most glorious moment walking out of the hospital 7 days later with a patched VSD. With that successful surgery, my PH pressures reduced slightly.

Life really improved until I turned 17 years old. I started having blackouts while driving, began becoming forgetful, and my CO2 was much higher. So I started using oxygen at night. As time went by in my life, I started having more Shortness of Breath. My oxygen flow increased, I started using a bipap to sleep with and I had to stop working all together. This happened when I was 23, just a year after I got married to the love of my life. It was a very difficult adjustment. He knew it was coming.. this health change. I told him when we were dating and then before we married. This is the best I will be. I won’t get better because there are no medications to fix my PH and only one pill that can regulate my heart arrhythmia that I now have. I asked him… Can you handle this? His answer was total honesty which is what I wanted to hear but was hard to hear because he said.. I don’t know. And then, I went on oxygen 24/7. My husband has been my rock and he’s made from the finest quality of human beings… his parents.

In 2006, my Cardiologist asked me to check out the medicine Revatio & Cialis with my pulmonologist. So off I went to see my Pulmonologist who then sent me to see a PH Specialist. I didn’t even know there were PH Specialists. Over the years, after trying most of the PH medications that are available, which there aren’t nearly enough, there is only one medication that my body can tolerate. This is what I will stay on until something new comes along that my doctor thinks might work. I’m not a candidate for lung transplant because of my deformed ribs. I spend my life finding different ways to do the things I need to get done. Picking things off the floor are by using my toes to lift it to my hands. Vacuuming is my husband’s job now. I bend at the waist to wash my hair. I have an adapter for my van to use my bipap on the road for vacations while in the car if have trouble breathing. I do things in short bursts of energy. What takes my husband 2 hours to clean the whole house, takes me all week and even then I can’t get all of the really hard things done.. such as scrubbing the tub, vacuuming or mopping the floors.

This is my life now and I’ve learned to adapt which is the key to keeping myself happy. I’ve found hobbies that I can do that brings me GREAT joy. Just to be able to garden, my husband has built me a raised garden at the height of 16 inches to help me not have to bend down to the ground to grow vegetables. Instead of growing my dwarf fruit trees in the ground, he planted them in half whiskey barrels. I had trouble with dragging a long rubber watering hose, so I asked for a Pocket Hose because it is SOOOO light!

Will there be a cure in my lifetime? I don’t really know. In all honesty, I’m not so concerned for a cure for ME. I’ve had a GREAT life, filled with love and so many adventures. What I am concerned about are all the children who have Primary Pulmonary Hypertension. They need a cure in their lifetime. They have their whole life in front of them but with PH and without a cure, all they have are the medications that are currently available. My passion is for these kids. I know what it’s like to grow up with health problems. PH is no easy disease to live with. Help us. Be PHAware and get the message out that we need a cure. WE ARE DESPERATE TO BREATHE. Check out PHAware.global to see how you can become involved in finding a cure and spreading the word about Pulmonary Hypertension. Or follow on social media @phaware

#PHAware

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16 thoughts on “My PH Story

  1. You have made a difference in my life through your words, my friend. I found your blog right after I was sent home from a long hospital stay and finally got the correct diagnosis. I was not sure what to expect living on supplemental oxygen 24/7, or using a bi pap machine while sleeping, but you helped me see that it was going to be okay. You are an inspiration and I thank you so much for your blog. Keep up your good work, and bless you!

    • Bonnie, I can’t find words to express how happy I am to know that I’ve helped you through my blog. It’s the reason why I continue to write. I know how scary it was for me when I went on oxygen and then to go on oxygen 24/7… well and then on a bipap. So many life changes can really throw a person. Please keep in touch. I always want to know how you are doing. You are so sweet and kind. *hugs* It will be ok. Email me if you need to talk.

      • I myself was struggling when I had to go on 24/7 for something different, Interstitial Lung Disease. But finding your blog has truly helped me, so thank you. I loved everything you wrote for the convention. My little niece is only 7 yrs. old & was diagnosed 2 years ago with PH. Her Mom isn’t accepting it to well So I haven’t shared your Blog with her yet. Let me know what you think on this please.
        I also wanted to share with you I’m a Crocheted myself. Have made a lot, until Being intubated twice in last 4 yrs. Now I am struggling some, gotten slower & lots of mistakes, so frustrating for me. Did you every have some trouble? Sorry if I through out a lot to you tonight. You are a great inspiration for others 🙂

      • Keli, PH is difficult to treat in kids. The PH medicines are tested on adults. Your sister-in-law really needs to know there are parents in the same boat as her. I just went to the PH Conference in Dallas, TX and saw some of the sweetest kids with PH there. She should think about going the PH Association website for support information. phassociation.org

        Sometimes I have to slow down with my crocheting when I’m tired and don’t feel alert and also when I do my inhaler because I’ll end up making mistakes. I have slowed down a bit that’s starting to become more noticeable. I just don’t have as much energy as I as I use to.

        P.s. I hope your niece is stable and managing well.

  2. Thank you for this post, Christine, and for all your wonderful posts. You have also helped me with understanding and accepting my need for a Bipap. Your information is really helpful and inspiring. I love your passion for helping others. Thank you for all that you do. It was fun getting to know you through this post.

    • Hi Marlene, I hope you are doing well adapting to your Bipap. Thank you so much for your kind words. It makes me so happy to know that I can help people by writing about what I’ve experienced throughout my life. I was thinking about changing up the About Christine portion of my blog to not only show the medical side but also the person I am today. My health problems aren’t who I am but they are a part of me. You know? ☺️❤️

      • Yes, I do know. My mother has MS, many times I want to say, MS is what she has, not who she is. Thank you for your good wishes about the BiPap. It’s a struggle to use. And I’ll keep working on making it work!

      • Marlene it took me a while to get use to mine as well. It kept messing with my sinuses. I once had to fly on a morning when I woke up with blown sinuses that affected my hearing on the plane to the point that I had to practically yell to the car rental people to hear what I was saying. If you ever have sinus problems, try Breathe Right strips or their generic brand. Works great! 👍🏻

  3. Hey Christine, I haven’t been diagnosed with pulmonary hypertension, but I ran across your blog while researching it. I have been having health problems off and on for several years, and chalked it up to possibly chronic fatigue. Then two months ago, I became ill, and haven’t gotten better. Weird, vague symptoms that may or may not all be connected. I have seen several types of specialists- endocrinologist, gastroenterologist, and a cardiologist, as well as my wonderful new pcp. There are things we have ruled out, and it seems we are finally on the right track to hopefully get some answers. My echocardiogram did show slightly elevated pulmonary arterial pressure at 32, which my cardiologist dismissed. That was a couple weeks ago. Last week I went back to my pcp for another battery of tests and when I mentioned the higher pressure to her, she decided to schedule me for a chest ct, which I am having done in two days. So, today I decided to research the arterial pressure, and found you. I have felt a bit worse the last several days, with shortness of breath that is somewhat relieved by lying down. Mornings are much better than evenings. I, too, am a blogger- in fact I have two separate blogs- and look forward to reading more of yours. Would love to private message you if possible. Thanks..

  4. Hi, I recently came across your blog in the search of how it is adjusting to having to be on oxygen, I’m not on it yet but having PH and the medicines I’ve tried are really not making a difference I feel as if i’m going to need it soon. I’m 19 and seems as if it would be something hard to adjust to but reading your blog gives me hope that it is something I can eventually get used to. I’m really happy I found this blog!

    • Hi Jacqueline! I am so glad you found my blog and that it was helpful in some way to you. If at anytime you have questions, please don’t hesitate to ask on my blog or in private to my email at goredrider@gmail.com Ok? I started using oxygen at night while I slept at 17 years old and I seriously thought my life was OVER! And that was before the internet age. Oh my gosh! I feel so old now. haha! I’ll be 48 in September and I went 24/7 on oxygen when I was about 23 or 24 years old. I’m not going to promise you that it will be easy from the start but it does get a lot easier as you get use to having oxygen with you. Surround yourself with people who care about you. Let me know if you have questions. *hugs*

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