Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.
I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):
My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.
After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.
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!
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
I’ve been waiting for this conference to come for the past several years. It was held several years ago in Canada and ever since then, I’ve been really, REALLY wanting to good.
So imagine my surprise when I heard nearly a year ago that the next conference will be held practically in my own backyard!!! Ok not really that close. It will be in Dallas, TX and that, my friends, is drivable since I go there anyway for my Pulmonary Hypertension doctor appointments. In fact, my doctor will be there. I already told her that I’ll try not to embarrass her by screeching and flagging her down saying, “*GASP!* There’s my doctor!!!*”
Seriously though, this conference is hugely important because it’s where PH patients (like me), Caretakers (like K), PH physicians and some sponsors all come together to offer the latest information about Pulmonary Hypertension. There will be support groups for parents of children with PH as well as for adults with PH and even for the caretakers.
I’m super excited to be spending the weekend there. I’ll have my puppy with me in my room. I think it will be a wonderful experience to be surrounded by so many wonderful people and learning how they have adapted their lives to overcome the challenges of having Pulmonary Hypertension.
I’m really interested in finding the people who were born with scoliosis and have PH as well. That’s similar to my health condition. I was born with Pulmonary Hypertension. So that makes me a long-term survivor of secondary PH and hopefully I can offer information to anyone who asks me.
I will be blogging my experience while at the conference. Hopefully I will have lots of pictures to post & show you. I’m still thinking of whether or not to take Klondike, my rubber chicken. He’s going to need a new hat. My sister kept Klondike’s beach hat. Probably for the llama she has. haha!
You know I love writing on my blog about living on oxygen and all that it entails but when an opportunity comes along where I share more of what I know to the world, of course I’d jump at it. I was approached by another blogger, Johan, who writes an incredibly wonderful blog. It’s not about his life. He took blogging to a whole other level. Have you ever been curious about things? Johan interviews people who have incredible stories to tell about all sorts of subjects. Sad stories, adventure, war, inspirational people, space travel… just a lot of interesting interview articles.
When I first visited Read an Interview and started reading the interviews, I thought…these are good! They are something that easily could be in a magazine. So, Johan, emailed me a list of questions pertaining to living with Pulmonary Hypertension and the equipment that I use to survive this incurable disease. I dug deep with this one. It’s the first time I’ve ever done an interview and I hope you like it. If you would like to read it, you can find it here: Living with Pulmonary Hypertension.
I really miss Photoshop. Seriously, I do. I really love taking pictures and also creating neat-looking graphics. So, I fell in love with Photoshop when I had a PC computer. Now that I have a MAC, I don’t have Photoshop. I looked for an app to create something to bring awareness to this month’s Pulmonary Hypertension Awareness campaign. You know, something subtle but eye-catching. Naturally, my picture was in my creation. hehe! Look to your left. Stunning, isn’t it? Ok, don’t laugh. I could only find a very basic app to put text on my photo. So sad. But! It gets the message out there and that is what’s most important. For those who need more information on Pulmonary Hypertension please go to: Pulmonary Hypertension Association.
Hello to November! It’s finally cool weather. I never thought this day would come here in Texas. There is something else exciting happening in November! Oh yes… exciting, indeed! November is the month designated for Pulmonary Hypertension Awareness. So, get out your Periwinkle or Purple clothes and support PH for the cure!
Seriously, we need your help. Did you know that Pulmonary Hypertension is a incurable disease… that means, there’s no cure.. YET! With YOUR help, by spreading the awareness of this disease, you can, not only help others to become educated about Pulmonary Hypertension, you can be saving someone’s life. Did you know that Pulmonary Hypertension is often misdiagnosed? For example, a lot of people with PH, before being diagnosed, just think that they are out of shape or their doctors think they have asthma or just extra tired. PH is a serious disease that can kill within 3 years of being diagnosed without medical treatment.
I don’t mean to scare people. I mean I have this disease. There are only 12 approved medications to treat Pulmonary Hypertension. That’s not nearly enough. Double lung transplants can cure you but how many people out there have signed up to be a donor? Are you one? If you are and I could be approved to have a transplant (which I can not), I would thank you from the bottom of my heart.
I want to add a SHOUT OUT for two websites that sell some pretty awesome PH jewelry. PHantistic Jewelry and Josephine’s Jewelry. I’ve bought from both of these lovely ladies and they make some awesome jewelry for a price you can’t beat! Support Pulmonary Hypertension Awareness and wear that periwinkle or purple!!!
I learned, once again, two weekends ago that life is short. Even though someone may live to be 84 years old, when they pass away, time spent with them is never long enough. A celebration of life is what I experienced that weekend with all the love and memories shared between family and friends. It was sad but glorious to feel life of one person touch so many even after his passing. There is no doubt in my mind that his memory will live on forever.
My whole life I’ve wanted to do something or be someone who will be remembered forever. I wanted to be profound enough to be remembered by those who know me long after I’m gone, not just a blip on the radar and then gone. I think there is a little bit of this in all of us. Though it may sound pretty corny, but I didn’t realize until I watched the movie “The Fault in Our Stars,” that the one person who will remember me always, who will carry the memory of me and the one who knows me the most is K, my husband. I may have had a big battle of a story called life before I met him, but our lives together is the epic story we will carry of each other forever. The one that matters.
So, I finally watched the movie and I cried like crazy too. I tried not to be over critical about the girl portraying the Hazel Grace character who needed oxygen. She did a good job. However, from my experienced view, there were some things that could have been done differently to show the truer side of using oxygen. I know, it’s a movie for entertainment purposes but this is the one time and the one story that a lot of eyes were watching. I was wishing, at the beginning or end (or both!) of the movie, the director could have put that “Breathing through a straw for a whole minute” tutorial to show the audience what it’s like to experience shortness of breath.
I’m trying to figure out whether the movie The Fault of Our Stars was focused on A. The relationship between Hazel Grace and Augustus, B. The illnesses, or C. The thoughts people have when they realize their days are numbered. I think this would be a good book for kids to read and discuss in high school. It could teach them so much.