I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

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2017 A Year’s Review…

Living On O2 for Life

Life during 2017 sure has been interesting. K and I have found ourselves confronted with many challenges that mostly were unexpected, which usually is the case for us. However, there were a LOT of good, fun, adventurous times throughout the year for us too. Thank goodness… because we really needed them.

January 2017 started with a visit from BOTH of my sisters at the same time! It was shockingly fabulous because it’s difficult for the both of them to have the same time off with their work schedule and then they’d have to drive down to see me now. I don’t travel well anymore and they are starting to understand that a little better now. It’s one thing for them to know their sister’s health is declining but it’s another thing to actually see it first hand. January brought the gift that I’d been waiting for… Christmas cookies made by my older sister and frosted by me and my sister and decorated (little kid style) by my very adorable niece.

February 2017 brought all kinds of exciting fun planning of my vegetable garden. We tried growing new things this year, like broccoli, squash, and tomatoes. I tried to keep up with the garden but with my health and the Texas heat, it started to get me way too tired just trying to keep it watered. A couple of times, K would tell me to just go inside because he would see me struggling with my breathing. So, he took over the garden for me. He’s my hero!

If you haven’t ever grown your own vegetables, it’s a sight to see and it’s actually very therapeutic. No, really… I swear! In March, the potatoes and our two tomato plants were growing like crazy due to amount of rain we’d keep having! Yay!!

In March, K and I were shopping in Home Depot and my liquid oxygen tank flew out of the cart and landed on the cement. What a scene that was! K was so worried about me but I handled it amazingly well after I realized it still put out oxygen. Whew, right? By the end of March, I was harvesting my first strawberries! Yummy! In fact, K was so interested in my strawberries that he filled two hanging baskets with strawberry plants to grow some of his own. Wow. I’m slowly turning him into a farmer! haha!

In April, K’s Aunts and Uncles came down to visit but stayed with his mom and his aunt here in town. By May, I had a lot of tomatoes I didn’t know what to do with them. I mean, we could only eat so many slices of tomatoes on sandwiches and for salads. So, I looked up on Pinterest how to make homemade tomato sauce. The process was tedious and it felt like it took forever but it sure was a success. I even had to call my mom for advice.

I didn’t get to go to my niece’s recital or birthday party because I can’t drive myself that far alone anymore. It just wears me out being the driver for that long. In between the missed trip to my sister, to the time I got to go see them later in the year, K and I went to 2 concerts. We saw U2 and then we saw Roger Waters (think Pink Floyd). Those concerts were a gift from me to K for his birthday and Christmas of last year. We used my wheelchair and I a bought a cup holder that I could attach to the arm of my wheelchair from Amazon. It was SO handy.. so convenient and affordable! Yay.. we all love affordable, right? Going to the concerts with K reminded me of the old days of dating K. We had a good time dancing, singing and acting goofy back then as we did for these two concerts.

In August, my older sister road the train to my city and drove me in my van to her house. I stayed with her for 10 days and then she drove me home and caught the train home. How sweet was that??? I know, right? I have to admit that I missed K something fierce. After I got home and rested up, K and I went on an adventure to South Padre Island for our 25th anniversary. We hit every art gallery and tried various restaurants and did all kinds of fun things. It was a great 10 days but on the way home, the front grill of my van flew off and went over the top of the van. I’m just thankful that it wasn’t me driving because it sure was scary. We didn’t see where it landed and thankfully no one was behind us. I knew we should have taken Klondike, my rubber chicken (road trip mascot). We got an estimate to replace the grill but it was an outrageous price. K and I had an idea but we didn’t realize that we were both thinking the same thing until we started talking about Plan B. We’d the grill replacement part on Amazon, order it, and K thought he could put it on the van himself. So that’s what we did for so much less! I’m so impressed with K’s skills! Though, he’s not much of a car guy but he can fix simple things. My MacGyver, he was! *wink*

From October up to now has been rough, K has had a lot of trouble with his eyes that scared the ever-lovin’ bejeebers out of us. He’s had to have 2 surgeries and I needed to take care of him while he recovered. It reminded me of just how much he actually does for me with my health needs and all done willingly and without complaint. I’m so lucky. I have to mention that he’s got some great ophthalmologists. One of them has the most awesome waiting room filled with jigsaw puzzles that anyone can work on and even a blanket rack that has CROCHETED afghans! *shock* Wow! K said his doctor wanted to meet me. Apparently, K had been telling him about me and the doctor has a daughter with scoliosis like me. So, without giving names, I’d like to give a shoutout to her! “HEY! If you are reading this, here’s a big hello to you and hoping that you are doing well.” *hugs*

Christmas was great! I got to help K decorate the house with new creative ideas this year. We try to add new ideas every year to the decorations! This year we added 5 wreaths we decorated together, 3 hung in our family room windows and one for two large mirrors we have. I had to go at a really slow pace hanging Christmas bulbs, wrapping ribbon around trees, and creating my 3 wreath masterpieces but we got it all done in about 5 days. Hooray! And now it’s January 2018. We’re ready for a better year. *fingers crossed* We’re already planning some exciting things to look forward to which is how we stay optimistic during the tough times.

You can see the pictures I take if you look in the right column of this blog under the Instagram heading. You don’t need to have an account to see my pictures. I just didn’t add them to this post because it’s already so long.

Going the extra mile…

Living On Oxygen for Life

I know I’m a lucky person. I have a husband who loves me and takes care of me in ways that I have no idea that he’s doing it. May 26, 2017 was one of those days.

Last year, K found out that U2 was coming to Dallas, Texas in 2017. It’s rare that they come here and they are one of K’s favorite bands of all time, next to Pink Floyd, of course. So, he asked and then begged and told me how important this concert was to him. He said he’d consider it his birthday AND Christmas present if I’d buy these tickets for him. I’m the CFO (Chief Financial Officer) of this family. Anything spent, that’s over $100, should be cleared through the CFO. That’s what happens when you’re living with someone who is disabled and has to go to the doctor often and take expensive medicine.

I knew how much K wanted to go to this concert and I won’t lie to you and say that I was really excited about going to the concert at first. I hadn’t been to a concert in YEARS. I didn’t know if I’d be able to last through a whole concert. I mean, how long do concerts last nowadays? That question was the most important question we faced going into planning for this night of fun. Yes, I bought the tickets. In fact, for the first time ever, I bought a seat for the disabled and a companion seat ticket. We decided to use my wheelchair.

The closer we got to the date of the concert, I started getting more and more excited. I asked my younger sister how long concerts last and she thought about 3 hours. So, we thought 2 liquid oxygen portables would be enough. We didn’t want to leave before the end of the concert. Two portables would give me about 4 hours of time safely. Though, when you least expect it, things don’t always go as planned. Do they?

On the day of the concert, I dressed up in my retro dress. It took me a while to figure out what shoes to wear and how to tie the belt around my dress. I’m not a fashionista. At all.. but K kept saying that I looked beautiful. So, how could I NOT wear a dress? How sweet of him!

We finally departed our house and drove to the DeathStar (the new Cowboys stadium) and there was a lot of traffic. I whipped out my handicap placard once we got close to the stadium. I told K to slow down and I rolled down my window. Well, I just pressed a button and it rolled down on it’s own. I stuck my head out the window and waved my handicap placard (like I knew what I was doing!) to a cop directing traffic. Yeah, I’m not shy AT ALL. The policeman walked up to my van and I asked him directions on handicap parking. That’s right. We were going in style! We ended up paying just a little extra (ok.. a bit more than I was comfortable with) to park at the building (a sidewalk away) in the handicap. It was right up there near Valet parking. A parking attendant poked his head in K’s window to scope the inside of our van. I don’t think I need to tell you what they were looking for with what happened in Manchester, UK a few days prior. There were police dogs walking the crowd and police with automatic rifles. Texas is serious with security. No purses allowed unless it was no larger than 5″x8″ in size. I actually took my PH International Conference name ID badge that I got in June 2016. It held my ticket, driver’s license, credit card, insurance card and my cellphone. It was the perfect size!

We got in the building and had no idea where to go. However, we quickly found out that if you are arriving in a wheelchair, not only do you jump through the line to enter the building quicker than anyone else. You get some incredibly friendly help from the Event Staff. It was nothing short of AMAZING! We only had to say we weren’t sure where to go and the Event Staff person we asked not only told us where we needed to be but also, TOOK us there personally. It was awesome! I was all smiles and “Thank YOUs!” I have to say the handicap seating was excellent. We were fairly close and not a single person was in front of us.

U2 concert 2017!

Now the scary part. As K would say, we “GROSSLY” underestimated the amount of oxygen we needed for the concert. I use 6LPM of oxygen 24/7 and my 2 portables would last roughly just over 4 hours. It was already 7pm which was when the concert was scheduled to start. It didn’t start until almost 8pm and it was the Lumineers, not U2. K and I talked about what we would do. I told him that I could turn my oxygen down to 5LPM if I just sit here in my wheelchair but I’d have to turn it back up to use the restroom or if I started feeling bad. He had left me for a little bit to find out about souvenir concert shirts. At least that was part of what he was doing. I didn’t realize he was going down to the police or the Event Agent at the door to see if he could later exit the building to refill my oxygen. He said no. He couldn’t let him back in he building if he left. Well that sucks! Right? So, he next went to the fire department personnel and explained our situation to him. He asked if they had oxygen with them and they said not to worry. If we have problems to bring me straight to them and they would help. Wow! (yes, they had oxygen!)

K came back to his seat without even telling me he had setup a backup plan in case we needed it. He even packed a picnic to leave in the van for after the concert in case we were hungry. We had a lot of fun, with my oxygen turned down to 5LPM, I was able to watch the whole concert from start to finish. We even stayed a little longer to watch some of the breakdown of the stage. That was cool too. It was just after 11:30pm when we finally got back to my van but all was well and we had a great time. Quite a number of the event staff and a police officer asked if we had a good time. I’d like to think this kind of hospitality happens everywhere but being Texan, I’m kinda biased. *hugs* haha!

Waiting for the U2 concert… Lumineers will be first!

Lots of love to y’all!

Staying Active…

Living On Oxygen for Life

I AM SO EXCITED!!! K built me a second raised garden bed so that I can plant even MORE vegetables this year. He knows that my energy is waning but he is wanting me to keep active so that my lung function stays stable. Plus, staying active makes me happy even though it takes a lot more energy. So, this year, K has committed to helping me with my garden whereas, last year, he told me it would be my responsibility to take care of it.

Here’s some of my gardens:

I planted 8 seed potatoes this year.

Carrots, Broccoli, & Herb garden.

I know what he’s doing and I appreciate it very much. He’s getting more involved in hopes that I will be encouraged to keep moving which has declined over the last 6 months. In fact, we even went out clothes shopping for me last week. I normally hate shopping but I hadn’t had any substantial new clothes in years. I’m someone who will wear what I own for years before I become willing to shop for new stuff. Shopping makes me tired and again, K was so instrumental in helping me make shopping for clothes really fun. He helped me pick out clothes (because he’s SO good at! haha!), came in the dressing room and helped me get clothes on and off if I needed it, went out for exchanges for different sizes, told me to rest when he saw I was getting tired, AND told me, as I was showing off each piece of clothing, how much he liked it or asked me if I liked it or will I be comfortable in it. You see, I have scoliosis and clothes don’t always fit right. It can discourage me a lot when I go out clothes shopping. So having K there in the dressing room giving his opinion was SO helpful. He’s never gone into the dressing room with me before. So, yeah, he’s noticing and really trying to make a difference in my life and our happiness.

Today, I have February’s Need a Hug afghan being mailed out to a sweet lady, Linda. I’m still working on March’s afghan. It’s about half done. I hope I can finish it by the end of this month. I hope everyone is doing well. Much love to you all! *HUGS*

P.S. I just told K that I need a new Rubber Chicken. *sniff* Klondike’s (my current chicken) finally broke his neck *cringe*. It’s so sad because he’s been on some amazing adventures! When I get a new one, I will need help with naming him (or her). I’ve never had a girl rubber chicken before! Yes, I know I’m a bit strange about these chickens but they are our Road Trip Mascots. They go on our vacations with us for good luck. *sigh* So far, over the last 29 years, we’ve had Poke, Poke Jr., Mr. Chicken, & Klondike as our mascots. It really is a fun thing to do. haha! Like I’ve always said, finding something fun to distract me from my health, no matter how silly it can seem, is how I deal with life.

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

Gearing up for the PH International Conference and What’s up with my heart?

Living On Oxygen for Life

I’m super excited to be going to the PH International Conference in Dallas this month. Hooray! I’ll be surrounded by so many people who have the same disease that I have. I hate to even call it a “disease” but that’s what Pulmonary Hypertension is. It’s a disease that has no cure but it’s slowing amassing some amazing medicines to help battle the symptoms that PH causes. We still need a cure. The conference is going to be a way for me to learn even more about PH. I want to actually try to find other people to have Pulmonary Hypertension who also has Scoliosis like I do. My PH is secondary to Scoliosis and Restrictive Lung Disease due to Scoliosis deforming my rib cage. Finding others like me will be difficult. Not many people out there like this. PH is a rare disease. I want to find those people and compare how they manage life with how I manage life and breathing. Maybe we could learn something from each other. *fingers crossed*

Before I go to this conference, I have to get through the next 9 days of the 10-day Halter Monitor I’m wearing to get a read on what my heart is doing. Tikosyn is not really helping my heart arrhythmias which is discouraging. The doctors didn’t believe me so I “suggested” that they do a Halter monitor to see what’s going on. We’ll find out one way or the other. Right? Like I said, *fingers crossed*

I’m actually impressed with the newer halter monitor that I’m wearing. It’s cool! I get a “Sensor” that has 3 leads and I wear it around my neck from an attached lanyard. Plus, there is the “Monitor” which is like a cellphone. When I have an “episode” with my heart skipping, I get to push a button on the screen of the monitor and go through a few questions about: What is happening? (I check: Heart skipping), What’s your activity? (I click either resting, mild, moderate, or heavy). So far, I’ve not had to click on heavy activity. I’m not crazy! haha! It’s raining and humid here. So, my activity is limited to indoors, low to minor-moderate activity because I get tired a lot faster in this kind of weather. There’s no telling what my carrots look like in my garden. I only have one orange left on my dwarf orange tree. The wind blew the others off.

If you want to see the many pictures of Klondike’s Adventure in Germany, you can view them all here… you don’t need an account to view them. My sister really did show my rubber chicken a good time so far. His trip is coming to an end soon. I’ll be meeting my sister and her family when they fly through on their way home. Maybe I should make her some more cookies! Shh! It will be a secret!

Stay well and be safe. Lots of love to you all! *heart emoji!*

–Christine

2016 PH International Conference in Dallas, TX

Living On Oxygen for Life

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!

Learn more about Pulmonary Hypertension at:PH Association Organization

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