Getting ready for company..

Living On Oxygen for Life

This is how K looks out for me. He’s awesome. I meant to post this last year. I just wanted to show you that there are some really great spouses out there. There are so many things that are just too hard for me to do and that’s when K steps in and takes over. I love this man.

Me: (finally lying in bed with Bipap & oxygen on totally exhausted from working along side K to super clean the house) Thank you so much for your help K.

K: (while mopping the hallway) Is the music too loud?

Me: No. Right now I don’t care about the music or the light being on. I’m exhausted. What you’re doing is so appreciated.

K: (stops mopping) This is what you wanted done.. What you needed, right?

Me: What you’ve done is awesome. You’ve gone above my expectations. Thank you.

Advertisements

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!

**********

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

What brought me to think about Suicide…

Living On Oxygen for Life

A good friend of mine wrote this poem and it really spoke to me. It’s about a topic that isn’t talked about enough. Please read this poem and then I’ll begin to outline my experience with this subject.

WHAT WOULD HAPPEN

What if we never wake
To see a smiling face
Upon our families lips
What else could take that place?

Your story has yet been told
But your fear is not just yours
That it won’t be heard again
Through your children’s wars

If you join the rested dead
Because the memories hit too hard
Your fable of what could have been
Will end, silent and barred

So do a favor not for you
But for those that stay behind
Never end your silent fight
For what you couldn’t find

Because all that’s lost is right in front
When you awaken a new day
That pistol’s meant to protect
Not take your life away

Be the one that won’t back down
And the parent that won’t say NO
Because when you’re gone it all goes numb
There’s no rewind for that low

The eyes that stare with crazy dreams
As you awaken from your past
Are the ones of the innocent child
That wants their parent back

When the words come out of you
That now is the time to go
Be sure your memories will not fade
When they sink you down so low

So live this life for those that watch
And do it as you should
But don’t be scared to reach a friend
That has been where you have stood.

Levi Bridwell
2-5-2016

Let me take you back to when I was nearly 15 years old and had just underwent a surgery that would change the course of my life forever. It was the most traumatic experience I have ever experienced in my life that left me with some deep emotional scars. The surgery I had, brought me so close to dying that even the doctor was freaking out (professionally, of course). He allowed my sisters, my parents, and my grandmother to come into the ICU two at a time to sit next to my bed for as long as they could bear to. I was a mess. My older sister was so upset that she started crying and had to leave the ICU. Her boyfriend stayed with me holding my hand. My little sister came in with our grandmother. I was so hot from breathing so hard that the doctor relented and allowed a fan to be placed pointed directly at me to attempt to keep me cool. I had a tube up my nose and down my throat to my stomach to pump out the flow of black bile that I was continuously vomiting up. I was dying and everyone knew it. Yet, I struggled to hold on.

When my little sister came in, and sat next to my grandma, she suffered quietly as she was always so sensitive to being cold. She sat in the direct path of my fan which was on its highest fan speed. I looked at her through the bed rail and I felt so bad for her. My heart rate was up to 200 bpm and I was sweating. I couldn’t turn it off for her. So, I did the only thing I could think of… I gave her my bed sheet for her to shield herself from the fan.

I will never forget the look on each of my family members’ face as they came to sit with me. There’s so much more to this story but I’ll leave it for another time. I just want you to remember this moment as I jump you forward a few years to when I was nearly 17 years old.

Life for me changed radically when I was nearing 17 years old. I started having blackouts. I wrecked my car numerous time due to blackouts, I tried working while I went to high school which made me continuously tired. I became hypoxic, forgetting homework assignments and where my classes were within the school. My psychology class assignment was to write an autobiography which pulled me so deep into depression that I would lock myself in the bathroom and cry. I started dropping classes that I didn’t need credit for to graduate because I was so tired and I was going to fail them.

With all of this going on, my parents had been divorced for about 3 to 6 months and we ended up moving outside my school district. We had to drive ourselves to school everyday instead of switching school which I do not think I could handle.

And then…. I got sick. Really sick. Pneumonia. I was so sick that I was carted off in an ambulance from my mom’s house to the hospital in the middle of a snow storm and stayed for 2 1/2 weeks making me even further behind in school. I had incompletes, Ds and an F on my report card with so many absent days reported that I remember thinking that there was NO WAY I was going to graduate from High School since this was my Senior Year. Plus, I had to quit my job.

Among all of that, my doctors realized that I needed supplemental oxygen at home at night. Everyday I thought about killing myself. Every. Single. Day. I doubt even my best friend knew I was thinking about suicide. So, I come home from a second hospital stay from rebound pneumonia and started my attempt to catch up on my school work. I couldn’t do it because I was such a mess. My mother came into my room to ask me if she needed to find some help for me. That’s all she asked and when I said, “No, I can handle my problems,” she didn’t ask anymore.

When I was like this, I closed myself off, became quiet, because any more added pressure would have been just too much for me to handle. I kept thinking back to the last surgery I had and the looks of my family and KNEW that I could never try to kill myself no matter how much I thought about it. I couldn’t do that to them. I didn’t think anyone noticed the turmoil that was going on inside me. Trying to deal with health issues, trying to graduate high school, dealing with a dysfunctional family life and more. I did graduate. My teachers passed me through due to my effort of trying. We moved to Texas.

Slowly my life started to change once I picked up an old Pentax camera, took long walks (finding a Pecan tree!), and learning to cook a few things for myself. I spent nearly a year just finding myself. Getting use to having my lungs needing supplemental nightly oxygen and learning to accept the future changes that will come. I know life will be ok for me but every-now-and-then I think of that surgery that very nearly ended my life. If I could survive THAT, then I could most likely handle the rest of this mess in my life. But, not everyone can, there are people out there truly struggling thinking that the only way out is through suicide. That’s not the answer. Getting help is the first step to finding your way through whatever life has thrown at you. Find a school nurse or counselor, a pastor of a church, a close friend or call one of the hotlines listed below and tell someone what’s going on that’s making you feel this way. Do it today.

Thanks to Lifeline Website, you can find information about what to expect when calling the Hotline.
National hotlines:

In the USA: you can call the National Suicide Prevention Lifeline free from anywhere at 1-800-273-TALK.

In the UK: you can call the Samaritans anytime, 24 hours a day, 7 days a week, on 08457 90 90 90.

In Scotland: you can call the Breathing Space phoneline, which is available 24 hours at weekends (6pm Friday – 6am Monday), and 6pm – 2am on weekdays (Monday – Thursday), on 0800 83 85 87.

2015 Happy Jar Revealed…. she opens the jar!

Living On Oxygen for Life

Happy Jar

Happy Jar

This post is more about becoming more motivated about living life while on oxygen. It has shown me that even though my year was filled with challenges, I still had many happy moments to add to my Happy Jar.

This is the happy jar that I made for my 2015 Happy Jar project. I filled it with written down happy moments that happened for me throughout the year. I’m now reusing this jar for my all-exciting happy moments of this year [2016]. If you’d like to read about what Happy Jars are used for, click and read my post that I wrote titled, Happy New Year!! It’s nearly 2015!.

Today, I dumped out the 2015 happy moments and started to read through them. Last year was a tough year for me. I struggled with motivation and breathing problems. With all of that going on, I didn’t think that I had slipped very many “happy” moments in my Jar. As I read through the “moments,” I found myself smiling while I remembered the fun and exciting times I had. This “Happy Jar” has been a great idea! In fact, I’m hoping to fill it up this year!

I hope you created one for yourself last year with me. If you didn’t, start one now! It’s not too late. You don’t have to be super creative with your jar. Mine is a clean Spaghetti sauce jar that I ran through the dishwasher and then painted and used polymer clay to decorate it. Give it a try and do it your way!

I thought I would share my happy moments with you. Let’s see how many I have. Maybe you will recognize some of them! Granted… not every happy moment of 2015 made it in the jar. It was fun pulling out the papers and reading the things I nearly forgot about that happened.

HAPPY JAR 2015

    ~ I just made a batch of Oatmeal Scotchies (cookies) and cleaned the mess. AND I’m not even tired from it! Hooray!
    ~ Results are back on the CT Scan. My aorta is only 4.3cm instead of 5.1cm. YAY! Whew!
    ~ Going to Oklahoma for 5 days for my birthday/anniversary!
    ~ I finished an afghan for my cousin’s baby! I love babies!
    ~ Made Rocco some doggy biscuits- homemade! He loves them!!
    ~ I finished the family Christmas photobook. I ordered an 8×8 book just for us to see how well it turned out. Can’t wait!!
    ~ My mother-in-law gave me a gift of a t-shirt that’s black with blingy cats. I LOVE IT!
    ~ Sore from painting last night. So, I made brownies as my motivational reward. Then, I continued taping trim and walls! Happy Day!
    ~ I finished my Happy Jar (added the cat on the lid) and made decorative papers for my Happy Jar! So Happy!
    ~ I sent an afghan to one of my parents! He wanted my name and date on it. Awwww!
    ~ I went to the doctor today to get the paperwork started for a new Bipap! Saw K at work, mailed a Need a Hug afghan, and then made dinner in the crockpot & cleaned up the mess. SUCCESS!
    ~ Family came for a visit and they tested out the Margarita Machine I got K for Christmas! Great weekend!
    ~ I’m so happy. K and I finished painting the family room walls, hung curtains, and pictures. Then cleaned our mess. It looks awesome!!
    ~ Klondike goes to Paris with sister and her husband.
    ~ Pictures are now coming in from Paris! Klondike is having a blast!!!
    ~ I finished Klondike’s Adventure in Paris photobook that I made for my sister as a thank you for taking Klondike on their vacation.

Random Picture Day # 11

Living On Oxygen for Life

Almost every year K takes me on a vacation for my birthday and our anniversary. It’s really a big thing with us. We generally pick somewhere that has a beach. It’s just so relaxing and I love watching K playing in the ocean or the gulf even though it scares me half to death because he wanders out so far. Hey! There’s sharks out there!

In this picture, K devised a way for me to not get too much sun. I get sun poisoning pretty badly because of my heart medicine. I love sitting under the umbrella watching K play and then when I’m ready, filled with energy, I wade out into the water. I have my portable oxygen tank in a plastic bag, attached to the chair. Sometimes, K will dig a hole in the sand and drop the tank that’s in the bag in the hole. He’s my personal MacGyver! I use my 50ft oxygen tubing so that I can reach from my chair out to the water. All I have to do is watch out for other people on the beach if it’s crowded. Another idea I’ve thought of doing with the tubing but haven’t tried it yet is to cover the tubing with sand. Then people can walk on it. K tries to take me out in the early morning or late evening when the temperature isn’t too hot. I last longer at those times.

Do what you can to experience life. This year we aren’t going on vacation because we focused on some home rehab. But there is always next year, right?? =o)

How to play on the beach with oxygen.

How to play on the beach with oxygen.

A parent’s love… part 1

Living On Oxygen for Life

I’ve often wondered what my parents went through while raising me and dealing with my health problems. I had a challenging, but happy, childhood… but how difficult was it for them? So, I asked one of my parents what it was like. I grew up during the first 8 years of my life with my biological father. After my parents divorced, my step-father came into my life within the same year. Life was so different. I became a very stubborn and bullheaded child. haha! My step-father, who I look to as a father-figure even though he is no longer married to my mother, stepped in and took charge of my health. For that, I will always be grateful.

So, I asked him a series of questions in an interview style in hopes to help other parents out there who have a child with disabilities.

    Q. At the first moment you met me and noticed something was different about me, what did you think?

A. Having some idea medically about your condition, I thought of the many reasons that I had decided not to have children of my own because of my own problems and how little the quality of your life must be!!!I was told you would not live beyond 12 or 13 years of age and at the time, I actually thought of that as a blessing!

    Q. What made you want to step in and take control of my health problems by taking me to doctor appointments?

A. I began to see you in a different light as I realized you were a special person who had a lot of spirit and I just fell in love with you…Certainly, your problems seemed insurmountable, but you weren’t afraid to fight for your life, I realized just how wonderful you really were and if you could face death with so much against you, then how could I not stand with you too!! I knew just enough about medicine to see a path to help overcome some of your major problems and besides you were a willing guinea pig and fearless!!!

    Q. How did you cope with the challenges of the doctors and what they want to do for me?

A. If the term, “ nothing to lose “ means anything, then in your case, we were at that point. We knew you had pulmonary hypertension which was slowly killing you, so your heart doctor and I spoke of probabilities of you never coming off the table were extremely high, but the alternative was unacceptable! Granted I died a few times while you were in surgery, but you pulled us both through it. I had never faced terror like that even in Viet Nam.

    Q. At times when I was very sick from a surgery gone wrong and as a parent, how did you deal with the emotions that you felt?

A. Actually, all your surgeries were very successful which is why you are still here, with the exception of one. I call it the “ bridge too far “ which was for all intents and purposes was almost cosmetic in nature. We had discussed how you always disliked that your scapula stuck out because of your severe scoliosis and I researched it and found a surgeon in Oklahoma who could do a “ rib resection “ that would bring your scapula down in a more normal position. This involved actually cutting out a few inches of rib from your side and all should be well. Unfortunately, the lab didn’t do a total pulmonary functions test and when you came out of surgery, you had to go on a ventilator and couldn’t breathe on your own. I blamed myself for the outcome for many years because the surgery wasn’t absolutely necessary, and I almost ended your life. I remember coming home to be with you at the hospital the mid weekend while I had been at summer camp ( National Guard ) and was dying inside because I had to fly back Sunday nite, and you were getting worse.

Random Picture Day #6

surrey

Living On Oxygen for Life

Oh yes.. we are going way, way, way back in the past of my life with this picture. Get your plaid bellbottoms on and step back into the 1970s with me for a bit. This is the house that I grew up in for nearly 10 years of my childhood. If you look on the right side of the picture, you will see the farmer’s corn field that we lived behind and also the forest of Short Story part 1 that I wrote about. This house has changed colors while I lived there from blue to green and back to blue again. It’s all wood too, which isn’t very helpful since we lived in the Tornado Alley. I can remember many of times that my sisters and I were woken up in the middle of the night to run to the closet under the staircase because a tornado was coming.

My parents bought this house when I was a toddler. Since I had so much trouble with being short of breath and heart trouble, my parents put my bedroom downstairs in a room that was meant to be an office or something like that. My bedroom door was actually a set of french doors. I thought I was pretty special because I had a bathroom that connected to my room like Mom and Dad! Everyone else’s bedrooms were upstairs. My short stories that I posted on my blog are based on my memories of this house and the fun I had here.

I guess you are wondering about the surrey. My little sister and I (and I think that my cousin is the driver!) are who you see in the picture. In fact, you can see the back of my grandpa’s head in the garage entrance. He’s the one who built the surrey from parts he found and my grandma had sewn the fringed cover. She has always loved crafts and sewing which is where I think I got my craft bug from. This surrey was awesome and it got a lot of action out of us kids! My little sister did most of the pedaling because I would tire out too fast. We even rode in it during a parade which was a VERY long and tiring pedal job!

I think my mom had to make a lot of my clothes or shirts because I wore a Milwaukee Back brace at this age too. So, shirts had to be big enough to fit over the brace and the neck opening had to be a little more roomy for the top of the brace. I always had to wear an undershirt because I wore one beneath the brace to help prevent rubbing my skin raw. My dad would take my brace off once a day and that’s when he used witch hazel on the pressure points where the brace would rub. Usually my hips, my right shoulder blade (scapula), and under my neck. For a long time, there was a dark brown bruise-like discoloration under my chin. My chin would always be up against the chin piece of the brace. You can see the brace I’m talking about here, under The Braces section of my blog. Scroll to the bottom of that page and the Milwaukee Brace will be there.

If you haven’t guessed already, I am the one with the blue shoes! Try not to laugh over my hair cut. It had to be short or my hair would get caught in the screw that closed the top of the brace which is in the back. I may have had a lot of doctor appointments and trouble during the winter with catching pneumonia occasionally, my life as a child was a good one.

Stay well everyone! FOLLOW my blog by clicking the FOLLOW button and entering your email address to receive notices for when I update my blog with a post. *hugs*