Living On Oxygen for Life – a repost from 2016 because this is so important to read if you are dealing with anxiety and control issues.
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.
I had a thought the other day about hair dryers. You know the ones that are handheld. Not the one’s that my mom use to sit under with curlers in her hair. I can still see her in my head sitting there with her rollers in waiting for her hair to dry. Wow.. She was a patient woman for beauty. She would while her time away painting her nails. She was skilled at that. Me? Not so much. *shrug*
My thought that I had was about a danger that I hadn’t thought of before. Mostly people know about the danger of not using or leaving a plugged in hair dryer near or in a bathtub of water. Yikes! Electric shock would ruin anyone’s day (or should I say life?). No, I was thinking about people who use oxygen while trying to dry their hair with that handheld hair dryer. It has a danger to it. Did you know?
Have you ever seen a hair dryer spark when you turn it on? I have. That in itself is dangerous because most people don’t clean the lint out of the vent of the hair dryer until it’s coated in the stuff. Now, we also need to remember about the heating element of the hair dryer. It glows red when you have the dryer on warm or hot, right?
Imagine yourself and how you use your hair dryer. Is it close to your face as you dry the underneath parts of your hair? Are you wearing your oxygen while drying your hair? I have to use my oxygen all the time. The thing is… I don’t dry my hair using a hair dryer but once in a blue moon (mostly in the Winter when I don’t want wet hair if I have to go outside). So, naturally, I didn’t really think of the danger that could happen if you mix a spark from a hair dryer and the oxygen that I or you use. In fact, at the website: Consumer Product Safety Commission, near the bottom of the page, it says not to operate a hair dryer where oxygen is being administered.
As for me, I air dry my hair. Using a hair dryer to dry my thick, long hair takes forever and makes me tired. Plus, I don’t like how it treats my hair. I end up looking like a fluff ball most of the time. Now that I have had this thought about the danger of using hair dryers with oxygen in use, I’m very cautious. I’ll admit that I still use one on RARE occasion but I know I shouldn’t. I hold the dryer as far from my hair as possible just to add an element of a buffer zone. I clean out the lint too. I make sure it’s in good working condition. I certainly don’t want a fire on my head!
Now, I’m not saying that you should use a hair dryer but if you still want to, I can’t stop you. Do it with extreme caution. Keep your hair dryer in peak condition and away from your oxygen. If it sparks, you’re gonna have problems.
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!
There are different reasons for a person who may require a sleep study. Sleep Apnea is one of them. I’ve had quite a few sleep studies dating all the way back to 1993. Even though I was already on oxygen at night only, my lungs couldn’t work well enough while I slept to blow off the CO2 that my body was retaining. My breathing was too shallow. I would have really bad dreams and I’d stop breathing while I slept most nights and the problem was only getting worse.
I was seeing a Pulmonologist in Dallas, TX, in 1993, who realized that my scoliosis played a large role in my breathing problems. Because my ribs are so deformed from my scoliosis-curved spine, it reduced the lung capacity that I had to breathe. Twenty-four years ago, my lung volume was approximately 25% of what a normal, healthy person my current age back then. Today, it measured at 16% at my annual physical. So, over the span of 23 years, my lung capacity has lost about 1/3rd of it’s former volume. Now, if you add the complication of Pulmonary Hypertension to the mechanical difficulties of Restrictive Lung Disease (from my deformed ribs due to Scoliosis), my health becomes difficult to treat. Now, add heart complications. I was born with an ASD (closed on its own) and an VSD (surgically repaired at the age of 10 years old) but also currently have trouble with Ventricular Tachycardia & SupraVentricular Tachycardia. This is the challenge my doctors face. How do you treat one problem without it affecting the others? The answer? Very, very careful trial and error. I make myself heard and understood. I carry test results from one doctor to all my other doctors. We are a team.
So, when I was starting to have a noticeably difficult time breathing earlier this year, I decided to systematically figure out what is causing this large step back in health. I started with my PH doctor. Then went to my Electrophysiology-Cardiologist. After that, I went to my family doctor to bring him up to date. Next, I went to my Pulmonologist who follows my bipap machine. We set up a sleep study. Not my favorite thing to do. I hadn’t had a sleep study since 2009. Maybe I just needed my bipap setting tritrated and that would solve everything… but I don’t think it will. I’m still thinking it has to do with Tikosyn.. the new cardiac medicine I started taking in place of Cordarone.
Next week… I see my normal cardiologist for an ECHO and to ask for a second opinion about this Tikosyn. I’m not giving up until I’ve tried everything to figure out what triggered this breathing setback. I don’t want this to be my new normal. Sure, it’s nice that K does all the grocery shopping on his own but sometimes we have fun together doing it. It just makes me too tired now.
If you’ve never had a sleep study done and you’re curious about them because you have been told you need one, well, wonder no more!
Here I am all wired up for my sleep study. There are a LOT of wired that are attached to your head, arms, upper chest, and legs. Don’t forget a few weird places like under your chin and next to your eye. Those get a little itchy! You also get an upper chest band and an abdomen band that monitors your breathing. I was able to bring my 3 pillows that I use and my own bipap mask because I already use a bipap. There is a dress code for pajamas. Some sleep studies are done in the hospital and some are done in a stand alone building. If you are to have a sleep study and you use oxygen 24/7, be sure to mention that and take a tour of their “bedrooms.” If you are doing a sleep study outside a hospital and you use a high flow of oxygen 24/7, like me, make sure they can accommodate your oxygen needs. I had to bring my splitter so that I can use two oxygen concentrators together; each set at 3LPM to be able to have enough oxygen while doing my sleep study.
Once you are in your sleep study, if you are having trouble breathing or with the mask they gave you to try, speak up. Let the technician know what’s going on. They’ll try to help as much as they can according to the doctor’s orders. Make sure you understand what your doctor wants to try during the sleep study before you have your sleep study. They really want you to be comfortable so that you can sleep as best as you can. Tell them how you sleep in bed. They’ll want you to try to sleep on your back for a while but my tech let me roll over (which was pretty hard to do with all the wires!) onto my stomach to try to fall asleep.
Seriously, I’d love to hear your comments, experience and advice for future sleep study patients. I know that the Bipap or Cpap machines can be a challenge at first to get use to but, once you do, they can help by improving the quality of your life… at least your sleeping life. *wink* My bipap machine has kept me alive for the last 23 years. I’m glad I didn’t give up on mine.
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.
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!
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