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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With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

A Long Awaited Update! September/October 2017

Living On Oxygen for Life

Let’s be honest… I’ve missed blogging and I know it’s been since before my birthday (last month) that I’ve posted anything on my blog for you to read. In my defense, the last two months have been incredibly… what’s the word I’m looking for?… trying?…no. Hectic? You could say that. Let’s throw in challenging with a bit of a MacGyver twist and super stressful at times. If you wrap all that up and include my two road trips that I took (one to Oklahoma to see my family & one to South Padre Island for my birthday/25th anniversary), I have to admit, it’s been a pretty awesome adventure.

It all started with my birthday/anniversary vacation that we try to take every year. We both took turns driving down to South Padre Island which took us about 9 hours even while having to stop nearing every two hours (when K was driving) to get out and stretch our legs and walk the dog. Rocco loved sniffing new territory but I hated having to use convenient store or McDonald’s bathrooms. Not just because I never knew what to expect going into one of those things but also because getting in and out of the car and walking to the bathroom now wears me out and makes me short of breath in the worst way. That’s something new.


We made it to Padre and it was overcast but that’s ok because we knew Hurricane Harvey just past by and almost everything was up and running again on the island. Yay for us! Two days after we arrived, a boat washed up on the beach which drew everyone, including the Padre Beach police, to check the boat out. We should have set up a beach chair next to it and charged people for us to take their picture! It took nearly a week for the boat to wash up this far on the beach.


K and I normally go for a nice steak dinner for our anniversary celebration. But who knew that there wasn’t a restaurant on the island, nor close by on the mainland, that sells a good steak? Instead, we had a small party of two at our condo with a gigantic birthday/anniversary cake that K intended to share with the waitstaff had we gone to a restaurant. Thankfully we brought our big ice chest and I had some square foil pans to save the leftover cake to freeze and take home. You better believe that I ate it all once I got home (K had the last piece..darn him!). I LOVE birthday cake!

We really had a lot of fun and took a few goofy pictures. I was even a pirate! Argh! After ten days in Padre, it was time to go home and on the way home, the craziness began. We were north of Austin, Texas when it happened. I was reading and K was driving… thankfully. Our grill from the front of our van broke loose and flew over the hood and smacked our windshield and then continued over the top of the van. It scared us so bad. Thankfully, no one was behind us and we looked but didn’t see it land on the highway. We get home ok and called our mechanic to see what it would cost to get it replaced. $600! Are you kidding me? The thing was made mostly of plastic. K and I had the same idea… look on eBay for the part. K said he could fix it himself and I was, like, “You go Rambo…you get into that MacGyver mode!” Sure enough, it cost us a total of $200 and K attached it with no problems! YAY K!

What K didn’t tell me was that on the way home from Padre was that he was starting to see floaters in his right eye. Then when he went to work, he called his optometrist and they told him to come in RIGHT NOW. He had a detached retina. I was so worried because now he had to have surgery and this was his eyesight!. The first time I went with K to his optometrist, K told me that he had been telling the doctor about me because he has a daughter who has some similar health conditions. Let me tell you that I have no problem that K talked about me. I mean, I blog… so of course I don’t mind. I was really excited about meeting this doctor to learn more if he wanted to talk about it. Naturally, I knew this appointment was about K but I did bring a printed copy of an x-ray showing my scoliosis. This doctor was really neat and very personable. K and I really like him. But what excited me the most was his waiting room. Holy cow… the moment I walked into the building, I was thinking that EVERY waiting room should be like this one. There were crocheted afghans on a blanket rack next to the door and in each waiting area there was a card table with a puzzle to be put together. I immediately zoned in on the puzzle. K knows. I love puzzles and there was an older man sitting there working on the one I noticed. I just blurted out … “Oh yay a puzzle!!!” (I know you’re visualizing that.. aren’t you? haha!) The man heard me and started to get up saying that I could work on it. I told him to please stay and I can work on it with you. I told him that I love puzzles and this reminds me of when I worked on puzzles with my dad. Awww! I know, right? I was so engrossed that I didn’t even hear K’s name called by the nurse. What’s so awesome was that there was ANOTHER puzzle in the waiting room in the back! I was in waiting-room heaven!

K’s surgery went well but I wore myself out having to drive him to appointments and waking up to check to see if he wasn’t sleeping on his back for the first week after surgery. That was stressful but after the first week, he could sleep on his side but NOT on his back. You would think that it wouldn’t be a big deal but people move around while they sleep and K is accustomed to sleeping on his back. So, I had a lot of waking up to do to check on him. With everything that was going on with K, I truly had an eye opening experience about how much he does for me without complaining. He drives me to doctor appointments that are an hour away, he pushes me in a wheelchair when I need it, he takes care of everything in the background when I have migraines, not to mention doing most of the chores and all of the grocery shopping now…and most of this is done without me having to ask. I got a taste of what he does for me when I needed to take care of him for a change. I was definitely humbled and I gained a new appreciation for what he does for me. Not that I never appreciated it but my health is changing faster now, requiring K to do more and I don’t always see what he does for me.

Lots of love to you all! Don’t forget to subscribe to my blog to follow along! Leave a comment too! Have a great day!!!

Happy September!!

Living On Oxygen for Life

Happy September everyone! I’m super excited! First because it’s September! Second because it’s almost my birthday. Third because it’s almost my 25th wedding anniversary! And fourth because, well, it’s almost Christmas!!! haha! Here in Texas the heat of the summer is starting to cool down. Unfortunately, a hurricane hit. It’s very sad. People are struggling to clean up the mess after realizing everything they owned is ruined or washed away. It’s most likely going to go down in the books as the worst hurricane disaster in the United States’ history. Hurricane Harvey dumped 25 trillion gallons of rain on Houston and the Southeast area of Texas. Please donate to Red Cross Organization if you can. God bless Texas.

I have been away from blogging for a bit (2 months!) and for that, I’m super sorry. I have been going through some health changes that needed some “lifestyle” adjustments (again)… which blows… However, I’m here now, ready to entertain you once again with my exciting life of living on oxygen. So, let’s begin! YAY!

Today, I went to my doctor appointment. As the nurse weighed me, she asked if I wanted to get my flu shot today. I was like, “What? You have them already???” [insert confused, surprised look on my face] I normally get my flu shot in October. Not that I find it superstitious to wait until October, but it’s always been my thing. Ok, maybe it’s a little superstitious. hehe! I could get it now but I don’t want to feel tired and achy around my birthday and 25th wedding anniversary. So, I’ll wait until next month. I never miss getting my flu shot. It really helps!

If you can get a flu shot, do it, but I know some people have negative reactions to them. Be extra diligent about washing hands after touching things in public.

As I was driving home from the doctor’s office, I was looking at the gas stations. They still have no gas in them. Some have diesel fuel left but not unleaded. A lot of people panicked and ran out to get their gas tanks topped off, filled up and some even filled a gas can the last few days. Now, no one has gas left. I’m sitting on just under a quarter of tank of gas. K’s car had a quarter tank left this morning but I’m not sure if he’ll have enough to get to work tomorrow. I hope gas comes soon. It’s starting to freak me out.

Well…. this is something new..

Living On Oxygen for Life 

This morning was all planned. I was going to wake up “casually early,” meaning around 9:30am instead of 10 or 11am and head off to get my labwork done for the month. You see, I still have to get monthly lab work to check my liver function because I take a Pulmonary Hypertension medication called Tracleer. However, for the past week, K has been off work due to cataract surgery in one of his eyes. He can’t lift anything over 20lbs for a week. Therefore, he can’t safely perform his job. He’s about to have his other eye worked on in a few days. 

Anyway, he’s been home and sees that I’m nearly awake when he recalls a VERY important factor about this month’s lab work changes that we were told by my PH doctor earlier this month. She wants me to have my cortisol level checked. I forgot all about that which is why it’s vital that betwixt the two of us, it’s handy that K has a memory like an elephant. Believe you me. I do not have a memory worth much at all. Even if I write things down, I’ll forget about it and then forget where I put my note once I actually remember that I wrote it down. 

So, I was scrambling out of bed, hot footing into the bathroom grabbing any color-coordinated clothing to wear on the way to take a speedy shower. K said I was suppose to go early in the morning. I’m freaking out because I didn’t want to delay my liver labs. I was running low of Tracleer and I can’t get those pills refilled until the liver lab results come back to the doctor. Thankfully, they usually get them the next day. But, I didn’t know how early I was suppose to show up for a cortisol lab. The doctor only said early AM which to me, that could be any various time in the morning. By the time I was out of the shower, dressed & ready go… K suggested that I call the lab first to get their interpretation of early AM for this new test. It was already 10:30am quickly approaching 11am (which happens to be my “I’m officially awake time. Let the day begin.”

So, I pick up the phone and call. I’m so glad I did. Before 9am, they said for cortisol labs. I hung up with a polite, “Thank you!” and then cringed. This is going to be hard. I’m going to have to drag myself out of the house early! It’s not even going to be for a doctor appointment…THAT, I would understand. But just for labs. Ugh! haha! I’m going to have to think of a good reward for tomorrow morning. Any suggestions?

I know I’ve seemed absent lately on my blog. I do respond to email, Facebook posts, comments of my blog here. I’m not gone at all. In between all of this, I am crocheting the Need a Hug afghans, which I have one to send out. Plus, K finished my second raised garden bed that I planted 8 seed potatoes in (so excited!) which leaves me with my other 2’x6′ bed & my 3’x4′ bed to plant vegetables in. I did plant 2 tomato plants already. As soon I finish planting my seeds, K will help me cover them with netting. The netting really helped last year to keep bugs (and stray cats) away. 

I truly hope y’all are doing well. Let me know how you are doing. *Huge Hugs* to all of my readers & visitors. 

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

Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!