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!
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.
One of the most important things people do not tend to think about when planning for a road trip while having lung issues, is the how the path you decide to drive will affect your breathing. When I turned 40 years old (nearly 6 years ago!), I begged my husband to take me to Las Vegas. Nearly everyone I knew has been there and had fun. I just haven’t been there and I wanted to go so badly. So, I made it my Birthday wish. Over the years leading up to my 40th birthday, K would always tell me we couldn’t go because it’s a LONG drive and there would be just us driving. He also didn’t think I would do that well on the road driving through the mountains.
Eventually, I wore K down and he started thinking about going since it would be my big 4-0 birthday and he wanted to make it special. We needed someone to go with us. Not just anyone. We ended up taking my MacGyver-like brother-in-law and my older sister, who just happens to be a Physician’s Associate. I asked all my doctors how they felt about me going to Las Vegas (and then on to California) and they all said the same thing. Stay out of the mountains.
Mountains and any altitude that you are not acclimated to can create a big problem for those of us who have breathing problems. Things like increased shortness of breath, sleepiness, chest pain, head aches, and nauseation are just a few of the things that I experience in altitude that is within the range of 3000 feet or higher. It doesn’t take long for the effects of altitude to effect me. It’s a distinct and highly recognizable feeling and it can not only make you feel miserable, it will make you sick.
So, what did we do? First, let me tell you, you must have a back up emergency plan if you truly decide to go… which I don’t recommend doing without a backup plan and talking with your doctor first. Your life and health are too important to not be overly cautious. I then started charting the route that we took. K and I only drive 10-hour days while on a road trip (and yes we took our road trip mascot.. my rubber chicken!).. so we needed to make sure we stopped in locations that, not only have a lower altitude level, but also a place to refill my oxygen if it is time to refill my liquid oxygen reservoir. Wouldn’t want to run out of oxygen while on the road, right? That would be bad as I started using a tad bit more of oxygen while in the car.
Since I live in Fort Worth, Texas, I had to pick a route that skirted most of the mountains and stayed within the lower altitude range. I live in an area that is at around 700 feet above sea level. So, I was guessing that my maximum tolerable altitude would be 3000 feet. Yes I would still have trouble but I would be able to go since my sister was going with us to keep an eye on me. Yes, she’s an awesome sister. I only wished that my little sister could’ve gone too.
I bet you are wondering how I planned the route. First, there’s an app for that but most importantly, there is a really great altitude website that lets you click on any given area and it will tell you the altitude. You can use this map for locations anywhere around the world. Using this, I was able to figure out which highways to use to make my roaodtrip the safest route possible. It wasn’t fool-proof. I still had serious headaches and I was really tired. However, I had the foresight to have purchase a wheel chair through Amazon.com and I took my pulse oximeter to monitor my oxygen saturation.
I hope this helps you plan your road trips. I posted this information in hopes that you remain healthy while on vacation and have all the fun you deserve.
I have no problem with letting you know the results of most of my medical tests. I’ve always been an open person. I feel that it is how people learn things that may relate to them or who may be too afraid to ask. So, by talking about my test results, it’s my way of helping those who are not only curious but confused.
Understanding ABGs (Arterial Blood Gas) results are confusing because the body is a complex thing. As always, if you are confused about what your ABG means, ask your doctor. Let me remind you again what my results are:
Here is my ABG results:
ph – 7.37 range: 7.35-7.45
PCO2- 65.9 range: 34-45 mmHg
PO2- 118 range: 92-100 mmHg
HCO3- 38.2 range: 22-26 MMOL/L
O2sat- 98% range: 94-100%
Total CO2 calc ABG- 40 range:19-24 MMOL/L
The HCO3 is the bicarbonate and mine is high. Because the CO2 is high, which is the Carbon Dioxide. My lungs can not exhale enough CO2 because they are becoming stiffer over time (not so elastic). They are small due to scoliosis which has deformed my ribs to the point it reduces the room for my lungs to expand. Hence the reason why I have Pulmonary Hypertension. My lungs are small, stiff, and have a difficult time exchanging the carbon dioxide with oxygen that it needs to keep my body moving. This is why my CO2 is so high. My carbon dioxide is high because my lungs can not make that necessary exchange making my breathing problem a mechanical one.
My heart works hard to make up for the demand of oxygen that my body needs. It senses that it needs to pump more blood into my lungs to get those gases exchanged which also causes the pulmonary hypertension. My heart can not keep up the demand of my body. What you see as the pH is a good thing. Because the HCO3 is so high it balances out the CO2 to make my pH within the normal range. Had the the pH been low with the results of the CO2 and HCO3, I would be in trouble from what I understand.
What this all means is my breathing problems are mechanical. Because of my scoliosis and the rib deformity, my lungs over time can not do the job they are meant to do, especially while exerting myself. I know in my heart that this is sad but I still find whatever positive I can from these results. I see that the pH is normal which means my one and only kidney (since birth) is holding up and doing its job. YEA! I see that the PO2 is lower than the last ABGs results of 212mmHg. 212mmHg is bad because that can trigger the brain to retain too much CO2. So, yes, there are a few positive things from this test and that’s how I choose to look at it. It would be easy to sink down into depression thinking that my life and my health is getting worse. But why do that? Why waste that energy when I’m still here and still able to have fun? Yes, I’m a little slower and yes, I need to use the wheelchair quite a bit more. But using that wheelchair gets me out the door. So… I have to use more oxygen. So what! Right? I’m here.. talking to you.. my friends.
What is my goal? It is always to try to maintain my health and keep it stable. It’s to keep myself out of the hospital. It means that I rest when I need to rest, use my oxygen (which I always do!) and take my medicine. The most important thing to do is to keep myself away from sick people.
Don’t forget to email me to enter the giveaway. I put a Need a Hug? menu button at the top of my blog to make it easier to know the giveaway deadlines and to see the current lapghan/afghan that is being given away. This giveaway is open to everyone.. even international (outside the US).
So, you use oxygen and are disabled. First thing, when planning to go on vacation, is to know your limitations. Just because you have limitations, (ie: get short of breath while walking, need help unloading luggage from the car, need time to take naps and even time to take your medication), it doesn’t mean that you can’t have fun. You just need to make sure that the people you are going to be with on your vacation are aware of your need for help.
The hardest thing for me to accept when I started using oxygen 24/7 was that it was okay to ask for help. I would visit my sister and would need help unloading my things from my van. I would need help with some things that I normally would have been able to do years ago. I was afraid of asking because I felt like a burden. But my sister set me straight. She said she was family and family and friends would always willing help me and not consider me a burden. All I had to do was ask. They may not be aware of the help you need.
Try not to over think your vacation preparations but be prepared. AAA is good to have while traveling. You don’t want to be stuck somewhere while on oxygen. Before you leave home, talk with the person you may be traveling with and whomever you’re staying with once you get to your destination. Let them know what kind of things you might need help with. A major thing for me is to let people know that I need the air conditioner turned down to about 72 degrees. I need cool air to help with my breathing. It is only temporary for the time that I’m there but it is necessary for dry, cool air. If people are walking too fast for you, ask them to slow down. It shouldn’t be a big deal to them. If you are tired, rest, rest, rest. Remember that vacations are suppose to be fun and it can’t be all that fun if you let yourself get drained of energy. Remember your medicine and a prescription for your oxygen.
This is me in my wheelchair. Notice how my husband hangs my portable tank on the handle bars. Behind the tank, I hung my tote bag where I kept whatever I needed in it. Driving a long, long, long distance and you use a bipap? Something interesting to have is a converter that plugs into a cigarette lighter and gives you a regular plug outlet for those machines, toys, and gadgets that don’t have a car charger. I’ve actually used the converter to plug in and use my bipap machine in the van for a quick power nap on the way to Las Vegas.
Make a list of all the things you need to take with you. Don’t forget your medicine and a cellphone. I always take my roadtrip mascot, Mr. Chicken. He’s my rubber chicken that poses in some of my pictures on vacation. There are a lot of ways to create fun on vacations. Just remember, you are not a nuisance or a burden. You use oxygen and people know that you need a little extra help. And that’s ok. So, relax and have fun. Take lots of pictures!!!
That’s right! I occasionally use a wheelchair. I’m not ashamed of it either. In fact, it’s my “free ride” when there’s a lot of walking to do. I held out for a long time before I started using one. It wasn’t until my road trip to Las Vegas that my husband and I decided to purchase a wheelchair for me to use. That was 3 years ago. It would have been way too much walking for me in Las Vegas (and yes, there’s liquid oxygen in Las Vegas). Now that I have less energy and more shortness of breath when walking short distances, I’m starting to use it for doctor appointments that are in hospitals. My husband pushes the wheelchair and hangs my liquid oxygen portable tank off the handlebars behind me. I bought it from Amazon.com for a pretty good price. I had to buy a separate seat cushion though. My number one requirement for my wheelchair is that it had to have feet rest and removable legs to allow the chair to fold easily. We keep it in my vehicle.
The wheelchair is one of those things that I had to cave into using. I didn’t want to have to use it until I just couldn’t walk far anymore. I needed the exercise, true. However, I was starting to make myself sick from pushing myself too hard. You wouldn’t believe how much more fun life is when I’m not so tired from walking all over the place! And people are soooo kind by getting out of the way when they see a wheelchair. Especially if they hear someone yell, “Go faster honey!! Weeeee…..!” (you’re picturing that now, aren’t you?)
I try hard to make life fun, interesting and exciting. I tend to not be shy. So, when people ask me something about oxygen, I answer. Be sure to follow my blog by signing up for email notification at the right of your screen.