Hello, my name is Christine. I use oxygen 24/7 and I’m 47 years old. I didn’t always have to use oxygen. It all began when I was 17 years old. It was a monumental change in my life. Since I was just a teenager at the time, it hit me hard. I’m hoping with this blog that people who also use oxygen can see that life isn’t over just because you need oxygen. I think the hardest part for me was accepting that I’ll never live without it again. Once I jumped over that hurdle, life began to change. For the good.
So with this blog… and for all those who are interested in knowing how I live with oxygen needs, I’ll post what I know in hopes that it will help others. Spouses & families too! I am married and what I’ve gone through since I was 19 years old, he’s gone through too with me.
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A little nervous. I have a doctor appointment tomorrow (Monday) and should be getting my flu shot. I’m nervous because last year when I got the Prevnar13 shot (a different Pneumonia shot) it nearly kicked my reared, leaving me feeling sore and wiped out. I told K that I wasn’t ever getting that shot again. He said, “Yes you will.” That shot is what stands between me and a stay in the hospital if I get sick and it progresses into pneumonia. I just hope the flu shot won’t hit me as hard as the Prevnar 13 shot did last year.
The flu shot usually gives my arm & joints achy pain as well an achy body with a mild sore throat and low grade temp (99 degrees) for a day maybe two. But that’s normal for me. It’s natural for your body to respond in such a way, to a degree, when it detects a foreign body. It tries to attack it and then it builds up antibodies to it to prevent future similar infections of that kind.
I hope if you haven’t yet gotten your flu shot and are not the few who have an allergic reaction to its ingredients, please get the flu shot. It can really help if you get a cold. It will help prevent that cold from turning into the flu or even pneumonia.
Here’s some information about Prevnar 13. Click on the picture to enlarge and read. This is the information my doctor gave me last year. You can also search my blog using the search box for a post I did about Prevnar 13.
K and I have been together for 28 years and counting. I’m very happy and proud of us for such a monumental achievement. We’ve been married for 24 of those years. It’s not easy to live with someone whose health is progressively changing. In the beginning, the changes in our lives came about slowly. We kind of thought, well, maybe I wasn’t doing enough to keep myself in good health. Maybe I was getting a wee bit lazy? But then, I would have a major health issue and our lives would be thrown into a temporary upheaval. Over the years, this would occur and sometimes without a warning shot across the bow to let us know it was about to happen. That’s the hardest part of having breathing problems (and heart problems!). We just never know when the unexpected will happen. One day I’m feeling good and then the next, I’ll be feeling like I want to sleep all day, all week and feel like I can’t snap out of it. At least that’s what it’s feeling like for me this last few months.
Over the past 25 years, during the month of September and October, Texas holds its State Fair. Every year I would ask K if we could go to the fair. It looked fun. I mean, the reporters from the news channels would all make it sound and look like fun. There are fun games, rides, and all the junk food you could imagine! Who wouldn’t want that? Apparently, K didn’t. Boo! He would always tell me that it would be too hard on me. It’s too much walking. It’s too hot… He had me with the “it’s too hot..” Darn him!
But this year, I didn’t really even ask. I haven’t really felt well. Last week he asked me what I was doing on the weekend. I scrunched up my eyebrows in deep concentration trying to remember if I had anything planned. Then I got my cellphone out because my memory wasn’t able to think of anything and I knew my calendar on my phone would have more information than my brain would have. Sad, I know! haha! So, I looked and what do you know?? I had nothing planned. K asked me if I would want to go to the Texas State Fair with him on the weekend. This time, I squinted my eyes at him trying to figure out if this was the same man I’ve known for the past 28+ years. All while my heart started melting with happiness and excitement. I couldn’t believe it! He finally changed his mind. He even said that “we’ll use the wheelchair, take both portables, and only stay as long as you can handle it.” Holy smokes! Well ok then! We’re going to the State Fair! Naturally, I did a mental happy dance!
It took us an hour to drive to the state fair and another hour to park. Sheesh! What a sticky wicket that was but at least we got to hop on the Tram to ride up to the front gate from our parking spot. Woohoo! They even had a place in the back of the tram where K could fold up the wheelchair and load it up on the tram. Well, that saved us some walking time for sure. We didn’t even have to stand in line to get tickets because before we left, I did a bit of research and bought our tickets & coupons for food online and printed them out. I do have to say that it was stinking hot. It was 90 degrees. It’s supposed to be Fall!
What’s the state fair without meeting Big Tex? He sure is tall. His clothing wasn’t what I thought it would look like though. I thought his belt would actually be a belt but it looked as if it was part of his “jeans” pants. His boots looked cool and like actual boots!
Now, we entered the state fair with somewhat of a plan. I also had the forethought to print out a state fair map and find the ONE THING K HAD TO SEE and that was the Clydesdale Horses. They are the ones who pull the Budweiser’s truck/wagon/whatever that thing is. It took us a while to find that thing. Mainly because K couldn’t hear the directions I was giving him. I mean, I have a map for heavens sakes! Oh well, we eventually found them. They were so beautiful!!! They had several of the dalmatian dogs there with them.
We also got a little turned around and ended up in the Auto Show building.
Throughout the day we stopped off to try some Fair Food. We both tried a funnel cake, fried snicker bar, a hotdog and a hamburger. I have to say that everything fried tasted like a funnel cake batter-breaded. I’m not a big fried food eater. Overall, I had a great time and I’m finally glad I can cross the Texas State Fair off my bucket list. Needless to say, we both took a super long nap when we managed to get home that evening. The drive home was just as traffic-conjested as the way to the Fair.
Keep in mind as you read this blog post that K and I are very experienced with traveling while loaded down with multi reservoirs of liquid oxygen. We are safe drivers and we take precautions before we head out on the road for vacation to ensure that our vehicle is in what we call, “Vacation Ready” mode. That means we take it to our favorite auto repair mechanic and ask them to look at our vehicle and make sure it’s ready for a road trip. We ask them to take a good look at the tires, brakes, belts, and to change the oil. They fix anything that needs to be fixed because we don’t want to be miles away from home and have car trouble. Thankfully, we have AAA (triple A roadside service) Membership.
Everything we need for vacation, including medical supples.
When we plan a vacation, there are a lot of factors that go into the planning. The very most important factor is the location of my DME company in relation to my vacation destination. We also take into consideration whether there are any Lincare’s along the way. For the ones along our route to and from our destination, we could possibly set up a refill for my liquid oxygen reservoirs by asking my local Lincare office to set it up. The Lincare that I stop at for refills have to have the capability to fill liquid reservoirs. Some Lincare companies no longer do liquid oxygen.
This year we decided to find a beach that we’ve never been to before. We love the beach and for the past few vacations, we’ve only tried to rent beach house one other time. The only thing with this house that we rented on the beach was that it was on stilts. We didn’t realize the stairs to the house would be so darn steep. When we finally got the keys and drove the short distance from the office to our rental house, we pulled in and saw the stairs. We brought with us 2 – 100 pound reservoirs of liquid oxygen that weigh about 165 pounds full (but feel like you’re lifting a ton!). It took both of us, with K doing the lifting. I was standing behind him supporting his back with one of my hands pressed hard against him making sure he didn’t fall backwards. By the time we got that tank and the 75 pound reservoir up the stairs and into the house, we decided that the other 100 pound reservoir could stay in the vehichle since it was parked in the shade under the house. We were both sweaty and hot after that. It was so humid.
We planned an extended vacation this year. My health has been declining. So, we both knew that I would need extra days when we arrived in Alabama and even in-between to adjust to the heat and humidity. It took me 2 days resting off and on before I could get outside and start having fun. K was super kind about not pressuring me to do anything that I didn’t feel like I could do. I arrived at the beach house with a migraine headache because the drive was stressful for me. The first day we drove we stayed overnight at a hotel. We came out the next morning and found one of our tires was flat from a piece of wood embedded into the side wall of the tire. Luckily, K had a tire air compressor in the back of the van and he aired it up enough to take it to a tire shop where he bought a new tire.
The second day we drove, K stopped to fill the van with gas, it was my turn to drive this time. For some reason, as I was sitting there waiting for K to come back from the bathroom, the fuel light went on but the fuel gauge stayed at full. I don’t know what made me do it but I actually pushed the tripmeter to zero it out. At least I would know how many miles I’ve gone with the gas that I have in the tank. Anyway, the fuel gauge scared me by dropping all the way to EMPTY while K was a sleep. Ten minutes later, the fuel gauge would start raising back up to full and the light would go off. That was creepy scary. I let K drive after that. Apparently, there’s a wiring problem. Ugh!
After I was ready to get out of the beach house, I hit the beach! Even from the wrap around porch of our beach house on one day, we could see a few dolphins swimming off the coast!
It’s easy taking my oxygen to the beach. K had set up a tent with two beach chairs beneath it for me to relax and watch K wade into the water. When I wanted time in the water, K would either carry my portable on his shoulder and hold my hand as we walked into the waves OR he would have me connect my 50ft tubing to my portable and clip my portable to one of the beach chairs that he’d move closer to the shore. I’d bury the feet of the chair in the sand to give it more stability. I’d just need to sit my tank right in the seat with strap clipped to the top of the chair. Perfect! I could walk up to 50ft into the water or just sit on each of the tide.
Dolphins along the coast of Gulf Shores, AL
This is how I sit at the beach under a tent on low beach chairs.
Rocco would sit with me while I crocheted on vacation.
We went out to celebrate my 47th birthday and our 24th Anniversary!
We really had a good time on vacation. We didn’t want to come home so soon even though we spent 10 days in the beach house. I think next time we are going to try to stay longer. It all depends on how well my health holds up. *fingers crossed* YAY!
Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.
I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.
It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.
For those of you who read my blog and use oxygen, have any kind of breathing problem or any kind breathing device, you know life can be challenging. Life is filled with highs and lows. When you get in those high places, it feels like you are accomplishing the things you want to do in life. Unfortunately, those high places don’t always last as long as we want them to last. At least, that is how it seems to me. Sometimes the lows can be pretty low and lasts for what seems like a lot longer than I’d prefer.
Switching over to Tikosyn from Cordarone involved a lifestyle change for me. It’s been a crushing blow to my happiness. Instead of one step back in health, it feels more like two steps back. It made me really frustrated, thinking and wondering what I did wrong. It’s made me have to, once again, reinvent ways of getting things done around the house. Some of the things, K has completely taken over which adds more stress for him. Both of us were hit hard with this unexpected change in my ability level. I get short of breath from scooping a cat box (which he now does) or using a broom on the floor.
K takes good care of me and I’m grateful for his love and understanding. He’s come a long way. *wink* He stopped thinking that I was just being lazy about ten years ago. He’s always known that I have breathing problems as well as the pulmonary hypertension on top of everything else. He just didn’t realize or understand how much & how quickly the Pulmonary Hypertension would progress over a relatively short amount of time.
So now, I’m going to take care of him. I’ve decided we’re going on a much needed vacation since we haven’t gone on one in 3 years. Right now all I can think of is how good the sand will feel under my feet with the water washing over them. This will involve a lot of planning for my oxygen needs but it’s always been so worth it. I’ve already secured our accommodations and I’ve even bought travel insurance just in case we have to cancel at the last minute or if one of us becomes sick while on vacation. It’s good to have a backup plan just in case there’s a hurricane too!
We both really need this getaway. We rarely watch TV while on vacation. We leave our worries behind while on vacation too. So it’s like we’re on an island made for us.. though, technically we’re not. This is our way to get back to a healthy mind and release all the stress even if it is for just a little while.
I just wanted to let you know that I’m getting into the swing of the new changes we’ve made. I’m back to blogging and YES Klondike will be going with us on our vacation. My sister sent him back to me! Yay! Stay tuned in for more blog posts from me! Stay well everyone! I enjoy talking with you on Facebook and by email! email@example.com is my email address for those of you who have questions or would like to say Hi!
While at the 2016 Pulmonary Hypertension International Conference in Dallas, TX on June 17 – 19, I met Steve Van Wormer, who helped create the PHAware Global Association. At the conference, he did interviews of PH patients to help get their PH Stories out to the public to raise awareness of this devastating and currently incurable disease. He asked me to do an interview. I tried my best to do the interview. He was SO gracious when my brain decided to blank out.. I explained that I write much better than I talk. The long term effect of high CO2 on my brain really has affected my memory and recall. Thank goodness for editing… and cut & paste. Hopefully, he can make something out of what I said.
For this reason, I want to get what I REALLY wanted to say here on my blog. Here we go!
I’m aware that I’m rare. Rocco has now become PHAware. He’s my PH Pup!
My name is Christine Liles and I have Secondary Pulmonary Hypertension. I was born with PH due to Congenital Heart Defects and Scoliosis that caused Restrictive Lung Disease. The doctors knew almost right away that I had Pulmonary Hypertension. The pressures were really high and since I was born in 1969, there were no PH medications or a course of treatment for this very rare disease. So, I grew up living with this disease taking Lanoxin for a short time to help slow my heart rate down. I was restricted from most gym activity because of the shortness of breath.
My parents & sisters were great at providing me with as close to a normal life as possible. Before the age of 10 years old, if my sisters bowled and played baseball in leagues, I was right there with them. Granted, I was much slower but I did it even though the doctors kind of frowned upon it. At the age of 10, my parents finally talked my Cardiologist into performing a corrective surgery on my Ventrical Septal Defect in my heart. My Thoracic & Cardiac doctors, both, didn’t want to do it because they didn’t think I had a chance to make it off the table. It was my most glorious moment walking out of the hospital 7 days later with a patched VSD. With that successful surgery, my PH pressures reduced slightly.
Life really improved until I turned 17 years old. I started having blackouts while driving, began becoming forgetful, and my CO2 was much higher. So I started using oxygen at night. As time went by in my life, I started having more Shortness of Breath. My oxygen flow increased, I started using a bipap to sleep with and I had to stop working all together. This happened when I was 23, just a year after I got married to the love of my life. It was a very difficult adjustment. He knew it was coming.. this health change. I told him when we were dating and then before we married. This is the best I will be. I won’t get better because there are no medications to fix my PH and only one pill that can regulate my heart arrhythmia that I now have. I asked him… Can you handle this? His answer was total honesty which is what I wanted to hear but was hard to hear because he said.. I don’t know. And then, I went on oxygen 24/7. My husband has been my rock and he’s made from the finest quality of human beings… his parents.
In 2006, my Cardiologist asked me to check out the medicine Revatio & Cialis with my pulmonologist. So off I went to see my Pulmonologist who then sent me to see a PH Specialist. I didn’t even know there were PH Specialists. Over the years, after trying most of the PH medications that are available, which there aren’t nearly enough, there is only one medication that my body can tolerate. This is what I will stay on until something new comes along that my doctor thinks might work. I’m not a candidate for lung transplant because of my deformed ribs. I spend my life finding different ways to do the things I need to get done. Picking things off the floor are by using my toes to lift it to my hands. Vacuuming is my husband’s job now. I bend at the waist to wash my hair. I have an adapter for my van to use my bipap on the road for vacations while in the car if have trouble breathing. I do things in short bursts of energy. What takes my husband 2 hours to clean the whole house, takes me all week and even then I can’t get all of the really hard things done.. such as scrubbing the tub, vacuuming or mopping the floors.
This is my life now and I’ve learned to adapt which is the key to keeping myself happy. I’ve found hobbies that I can do that brings me GREAT joy. Just to be able to garden, my husband has built me a raised garden at the height of 16 inches to help me not have to bend down to the ground to grow vegetables. Instead of growing my dwarf fruit trees in the ground, he planted them in half whiskey barrels. I had trouble with dragging a long rubber watering hose, so I asked for a Pocket Hose because it is SOOOO light!
Will there be a cure in my lifetime? I don’t really know. In all honesty, I’m not so concerned for a cure for ME. I’ve had a GREAT life, filled with love and so many adventures. What I am concerned about are all the children who have Primary Pulmonary Hypertension. They need a cure in their lifetime. They have their whole life in front of them but with PH and without a cure, all they have are the medications that are currently available. My passion is for these kids. I know what it’s like to grow up with health problems. PH is no easy disease to live with. Help us. Be PHAware and get the message out that we need a cure.WE ARE DESPERATE TO BREATHE. Check out PHAware.global to see how you can become involved in finding a cure and spreading the word about Pulmonary Hypertension. Or follow on social media @phaware
I’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!*