Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

November 2016

Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!

Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.

O2 spltter

O2 spltter

But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!

I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*

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

Klondike’s Adventure Begins! Off to Germany!

Living On Oxygen for Life

Yesterday was so exciting! K & I drove to meet my sister & family at their hotel for a visit before they take off today for their vacation. It was so great! Yesterday, though, I got a text from one of my twin nephews asking if I’ll make his favorite cookies. The whole family loves Chocolate Oatmeal Cookies. I texted back.. “Of course I will!” I made a whole batch yesterday morning at 5am because I couldn’t sleep any longer. Before I started, I was kind of freaking out because I thought I ran out of sugar and thought I didn’t have enough 1-minute oatmeal but I finally found the new bag of sugar that was hidden away and the oatmeal ended up being enough. Whew!

I made Klondike a new hat, an English to German dictionary (like his French one), a fun tourist map of Germany, some miniature old newspapers of WWII as reading material for my chicken while on the plane, his wallet & money, his Germany Travel Journal (different from his Paris Journal) and his passport. My sister said she will get some German stickers to cut down to size to add as customs stamps to his passport. How clever is that? She’s very creative like me.

The first picture came in today as they are getting ready to head to the airport. Klondike is a PRETTY COOL DUDE! I can’t wait to share his adventure with you and hopefully brighten your days to come like it does for me. Being on oxygen, we need all the fun and exciting things we can get to help us get through life. So, even though owning a rubber chicken who goes off on adventures is a little silly, he does his job in brightening my day. He really makes me laugh so much! lol!!!

Klondike is wearing his fuzzy wolf ears from the hotel and enjoying his first Chocolate Oatmeal cookie. He's ready to travel!

Klondike is wearing his fuzzy wolf ears from the hotel and enjoying his first Chocolate Oatmeal cookie. He’s ready to travel!

This is the cover of his dictionary. It's only 2 inches tall. Everything fits in his backpack.

This is the cover of his dictionary. It’s only 2 inches tall. Everything fits in his backpack.

Stay well everyone!!!

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.

An Overload of Information to Catch You Up!

Living On Oxygen for Life

Oh my goodness… I have so much to catch you up on. First, let me show you my MacGyver invention that I took to two movies and a trip to see my sisters a few days ago. It enabled me to take both of my portable liquid oxygen tanks and not have to carry them myself.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

I put one of the portables in the bucket and strapped the whole thing in my van on the middle bench with the seatbelt. It worked really well! Next thing I need to tell you that my trial with Adempas is over. I didn’t do very well on it. I had a constant headache and my breathing had gotten worse. So, I talked with my doctor and she agreed to stop the medicine. Having Restrictive Lung Disease makes it hard to find Pulmonary Hypertension medicine that my body will tolerate. Right now, I’m back on 62.5mg of Tracleer twice a day.

Christmas was great!! K and I decorated the house again this year. Unfortunately he had to work on his days off but I had the energy to decorate most of the Christmas tree myself since I went slow. It took me a couple of days to get the ornaments on the tree. Here’s a couple of pictures of what we did.

Our 2015 Christmas Tree!

Our 2015 Christmas Tree!

K made our table look great with a live tree from Jackson & Perkins.

K made our table look great with a live tree from Jackson & Perkins.

I had fun crocheting some holly and berries... I turned them into knob ornaments.

I had fun crocheting some holly and berries… I turned them into knob ornaments.

My Mary enjoying the Christmas tree 2015.

My Mary enjoying the Christmas tree 2015.

 

 

 

 

 

 

 

 

 

 

 

 

When I was visiting my sisters a few days ago, we met up at Winstar Casino since it was the most central place to meet. My little sister is the one who went to Paris and she brought me back Klondike! It was good to get him back home but it looks like he is going to be a world traveler because my little sister said they will take him to Germany when they go. Germany!!! How cool is that? They really liked the Shutterfly book I made of all the pictures they took of Klondike in Paris. They texted them to me each day they were there. By doing this, it gave me a chance to travel by proxy to places that I’d never thought I could go. Overseas! Plus, I got a very awesome purse and a beret! Yippee!!

The French Beret I got from my sister!

The French Beret I got from my sister!

I know I’m overloading you with a bunch of information but I can’t stop now! I have more news to tell you! This one is super exciting because I worked all year to accomplish this one. My dwarf Meyer Lemon tree, that I’m growing in a half whiskey barrel, produced 3 whole lemons for the first time ever and it took all year to grow them. I think I’m going to make lemon brownies with a glaze on top. I forget what they are called but I found a yummy Pinterest recipe. The lemons are HUGE!

It took one year to grow these!

It took one year to grow these!

I’m still crocheting Need a Hug afghans. Even though 2015 was pretty rough and my Happy Jar doesn’t have a whole lot of “Happy Moments,” I’m determined to make 2016 a more awesomer year. Yes, I said AWESOMER which is a new word I invented and I’ll say it until it catches on! haha! Have a great year everyone and stay well and warm. Sorry I had to throw everything at you in one blog post. Believe me, I could go on but, I’ll let you digest this post for a bit before I post more. Lots of love and hugs to you all.

Know Your Limitations…

Living On Oxygen for Life

Know Your Limitations for the Holidays.

So, you use oxygen. Whether it’s 24/7, like me, or you use oxygen during activity, you should always know your limitations. The holiday season is now upon us. Heck, it’s been upon us since just before Halloween! Personally, I don’t understand that. I’m a type of person who loves to enjoy each holiday for what they stand for. Aren’t you? Though, I certainly can’t wait for K to start decorating for Christmas. He really has a knack for that. Remember last year?

Your limitations are your body’s warning signs for telling you to slow it down and pause for a rest. No one wants you to peter out before the fun starts…whether it’s board games or Football games –backyard or on the TV in your comfy recliner. I think everyone who reads my blog would want you to enjoy the holidays with your friends and family without risking your health by overdoing. Right, y’all?

So, what do you do? If you are the one who does the cooking for the holidays of the past but are now on oxygen, you can either pass the baton to another family member to cook the meal or delegate the whole meal as a pot luck. You can even prearrange by ordering a precooked turkey or ham from your favorite store and have it picked up! Save your oven for the important stuff, like PIE! Yum!

Plan on taking sit-down breaks that are uninterrupted. Got the meal under control or have someone else tending to it? Take that power nap before the meal. Teenagers are a great source for free help. Trust me… I was once one! They will do just about whatever asked to earn a chance to sit at the “Adult” table this year. You remember the moment in your life when you were given that honorary seat at the table where all the adults gathered to sit and eat (and talk!). It was….a beautiful day. *sigh*

With all the activity and excitement, even if you are not prescribed to use oxygen 24/7, you should always use your oxygen as your doctor has prescribed! You should never feel embarrassed to wear your oxygen. Your friends and family care about you and should always put your health as a priority. They want you to have fun too. So, if your body is telling you it’s tired but your brain still wants to get something done, listen to your body. Don’t be stubborn. Just get some rest and ask for help. People are actually willing to help you but most are just unsure how to be of assistance. Need something moved? Ask! Need help getting up from the couch? Ask! Is your oxygen tubing stuck around a chair leg? Ask for help! Someone STANDING on your O2 tubing??? Well, shove him off!! No… Just kidding! I always tell people when they come into the house that it’s ok to accidentally step on the tubing…just don’t stand on it and to watch their feet so they won’t trip. You need to not be afraid to speak up and ask for help. It’s really ok!

Wherever you go and whatever you do for the holidays, I hope it’s full of fun, love and adventure. Leave a comment tell me how you handle the holidays on oxygen! Be well and stay safe. —Christine

Day 2 of Klondike’s Big Adventure!

Living On Oxygen for Life & Klondike’s Big Adventure

This morning I woke up a little earlier than usual. I was hoping to have received more Klondike updates from my sister today. So, at about 6:30am, I crossed my fingers and said a little prayer in hopes of an update. Now, mind you, I realize that this is their vacation and they are there to have fun for themselves which makes it all the more special to me that they are actually doing this whole thing… WILLINGLY!! haha! It’s great!! It really has me excited and happy. I wake up wondering what kind of poses they’ll have Klondike doing next.

Here’s today’s batch of pictures!!

Klondike's relaxing in an oversized tub. Look at the bubbles!

Klondike’s relaxing in an oversized tub. Look at the bubbles!

Wow! When I first saw this picture, I thought he was in a hot tub. I replied back to my sister… Ohhhhh…Chicken soup!

Klondike getting on a train to Disney - Paris

Klondike getting on a train to Disney – Paris

Klondike is watching the French countryside pass on the way to Disneyland.

Klondike is watching the French countryside pass on the way to Disneyland.

Klondike holds his ticket to Disneyland!

Klondike holds his ticket to Disneyland!

Lucky Chicken!!!!

I think Klondike is wowed by the magical castle in Disneyland.

I think Klondike is wowed by the magical castle in Disneyland.

This castle seems bigger than the American Disney castles. What do you think? I hope you’ve enjoy today’s Klondike’s Adventure Update. have a GREAT evening or day, wherever you’re reading my blog from. Stay well and don’t forget that flu season is coming.

Get your FLU shot now.