I’m trying to think back to how long I’ve used oxygen 24/7. That’s 24 hours a day, 7 days a week. It’s been many, many years. Let me think…It was definitely after I got married. Though I was still on oxygen. I started when I was 17 years old. But, I started using oxygen 24/7 in probably 1993. Ok Wow! That’s 21 years. Yep, I just did the math. It’s amazing, right? This shows us that we really can live a long time even though we need supplemental oxygen. I keep looking at that 21 years and it’s making me smile. All the fun, goofy things I’ve done and all the adventures I’ve been on over these past 21 years have been so crazy fun.
When I say that I use oxygen 24/7, I mean that I’m always using oxygen whether it’s to water my plants outside or taking a shower. I get in a swimming pool, put make up on, clean the house, and basically everything else a person has to do to live and have fun. I don’t worry about being in water with my oxygen on. Water won’t get into the tube. If I’m using my portable and I’m at the beach, I put my portable oxygen tank in a plastic bag. My husband digs a hole in the sand and drops the portable that’s in the bag into the hole and then covers it with a towel. I use a 25 to 50 foot tubing attached to my portable tank and then I wade out into the water! It’s so fun but I have to be really careful to make sure no one else who’s on the beach trips over my tubing. We usually pick a spot on the beach where no one else is around or go to the beach early in the morning or late in the evening. If there are a lot of people on the beach, K will hold my portable, take my hand and walk me out into the ocean so that I can get in the water. I do NOT swim. I’m totally scared of water. I drowned once when I was about 2 years old and I think that has A LOT to do with why I have a massive phobia about water. It’s really inconvenient because I think swimming looks really relaxing. Though, I will float in a blown up tube!
I do take my oxygen off when people are taking my picture but not always. I’m not able to stay off my oxygen for more than a few minutes without really suffering from my oxygen desaturating.
I’ve been so busy lately. K and I are having a few things done on our house and it’s taken up so much of my time that I’ve not been able to blog lately. Hopefully with most of the house projects finished, I will be back in action again on my blog. I do apologize. I have been on Facebook, email, and Instagram because I can write from my phone and iPad. So, I’m still here!
My newest “Need a Hug” giveaway is posted! The deadline to enter for the afghan is June 30th, 2014 at midnight. I hope you will enter! Lots of love to you all!
Last Friday was a very long day. I was hoping to be able to breeze through my appointments and return home with an ice cream cone as a reward for being such a good and compliant patient. But, apparently, the doctor had something wicked up her sleeve. I told the doctor that I was getting more headaches that went away after I rested with my bipap on for a while. Wait.. wait… I’m getting ahead of myself. Let me think… oh yes! The day started out pretty good. In fact, even though I didn’t sleep a wink ALL NIGHT LONG because my brain wouldn’t shut down for the night, I was able to get myself dressed with clothes and makeup. I even curled my hair! Whoa! So this kind of thing happens when I don’t get any sleep?!?!? Not normally. It was freaking me out too. So, I skipped the morning diuretic but took my heart medicine and my Symbicort and was ready to leave at precisely 7:30am. I grabbed the last of my chocolate oatmeal cookies and I was out the door. I know, breakfast of champions!
Well, the Friday morning traffic was INCREDIBLY lighter than what we were expecting. So, K stopped through McDonald’s drive through just to feed me. I was a little worried because I hadn’t slept well (ok, I might have gotten a wink.. maybe two winks of sleep). You see.. eating makes me sleepy and sluggish. That’s why I was a little worried. I didn’t want to get more tired but I said, “What the heck! Let’s do this up big!” So, I ate a delicious Egg McMuffin and a hash brown. I ate it on the go.
We arrived at the hospital a whole hour earlier than we had intended. Oops! But this is Friday. What happened to the traffic of rush hour? It kind of boggled our minds too. Anyway, we slide right into getting my CT Scan. That took a whole 3 minutes. In fact, K barely had time to get comfortable with his earbuds to watch movie trailers before I was back out in the waiting area telling him that I’m finished. He almost looked disappointed that he didn’t get a chance to watch anything on his phone. Silly man. But, we were on the move in my handy dandy wheel chair; making a bee line for the elevator. There was another person getting into the elevator who was in a wheelchair and K seriously thought about fitting us in there with them. It just wasn’t gonna work. We waited for the next elevator. We are risky people but not that risky! Besides, I don’t like being in overly crowded elevators. There is a weight limit on those things.
We go up several floors and I check into the doctors receptionist and state that I’m a wee bit early. She looked down at the time my appointment was scheduled and then at the clock and gave me a stunned look. I asked her if we were going to have to wait or can they get us in early. Guess what?? We’re in like a Schwinn! (<– that's a bicycle!) It was great all the way up to the point where the doctor said that I needed to get an ABG. That would be an Arterial Blood Gas. She saw my deer in headlights look and said that I didn't have to get it today if I didn’t want but K spoke up and told her that it was no problem. I bet you can just imagine what was going through my head at that moment. Right? So, I asked the doctor if I still needed to do the 6-minute walk. (you know that I try to talk my way out of it a lot!) But K spoke up again and said that we should just get it all over with today. *GASP!* Well, God bless that man. I tell you what.
K always does the 6-minute walk with me. He lugs the hospital’s tank of oxygen around with us as I walk up and down the hallway outside the doctor’s office. I didn’t do so bad. I was just a little slower than I normally do because I was tired from only getting two winks of sleep. After the 6-minute walk I went back downstairs to the lab department for them to call for a Respiratory Lab person to draw the ABG. I have to admit. The guy was pretty good. He only mildly grazed a nerve at my inner elbow. My arterial pulse is stronger there. Frankly, it’s a lot better getting them there than at my wrist. A LOT better!
Well, we are finally done and back on the highway heading towards home when K asks me if Jack Ryan is playing at the mall theater. I perk right up and get all excited! This is IT! My reward! Woohooo! I love movies and it’s even better when K takes me to a movie so we both can enjoy it. But wait… that’s not all! After the movie was out, he wanted to take me into the mall. I’m pretty stubborn about walking in the mall. To tell you the truth, I hate malls. Because I have to walk a lot. Which makes me tired fast. But I went walking in the mall (a little grumpy at first because by then I was starting to fade fast). We came up to the store K was looking for and he said he wanted to get a ball cap. I’m like.. ok.. So, I’m looking for ball caps when K walks me up to the service clerk man. K says to him… “I’m looking for a Peyton Manning Broncos jersey in her size.” SHE SCORES!!!!!!!!!! haha! YIPPEE! They had one small left and by golly… It’s all mine!!! Isn’t he great y’all? On this day, I take a vow to try hard not to complain about the mall again! *wink* So, are you ready for some football tomorrow?
Don’t for get to FOLLOW my blog! Tomorrow I will post my ABG results. I had the ABG draw done while using 5 liters/min of oxygen.
Correct me if I’m wrong but I think we all hate going to see the doctor. Especially, if we don’t feel so bad. Right? Friday is going to be the day that I make my quarterly appearance at the Pulmonologist office. Yippee! Not! I’m grumbling… I’m sorry. It’s just going to be a very long day and I’m already telling myself… I don’t want to go… I don’t want to go… I REALLY don’t want to go! *sigh*
Friday will start out at an unGodly hour. I’m thankfully NOT going to take my diuretic in the morning. So, that will be a bonus. However, not taking it for the morning will leave me feeling a bit like a water balloon. It’s a gamble.. I know. I’d rather not take it before the doctor appointment than get overly tired before I leave for the appointment and end up having a migraine all the way home. Clear across two towns. It can be a very uncomfortable ride for both K and me. Me, because I feel so bad. K, because I usually am throwing up all the way home. Yeah, in the car. YUCK! Too much information? Sorry! haha!
Ok. So, after arriving in town for this appointment, the first thing to accomplish is to get a CT Scan of my heart and lungs. I have a dilated ascending aorta that they’ve been keeping an eye on. It’s getting closer to the need for surgical intervention. Not cool. I try not to worry about that so much. The doctors tell me to not let my blood pressure get too high. I never thought it was high to begin with. (It’s not!) So, maybe they mean something else? Anyhoo, after the CT Scan, we have to get back in the car and drive to another building for the doctor appointment.
Then after the appointment, I get to do my least favorite thing. Oh wait.. that would be a blood gas draw and I’m not doing that hopefully ever again! I’m talking about the super-duper 6 minute walk! That’s right. For 6 whole minutes, I too will be in the Olympics this year. Just kidding. I do try to imagine something fun while I’m walking. Though, K walks with me up and down the hall dragging the bottled oxygen the hospital supplies me for while I’m there so I don’t run out of my own. K’s pretty entertaining to walk with. He matches my rate of walking and talks to me while I huff and puff. I’m not suppose to talk during the walk. It can skew the results.
When I started going to this pulmonary doctor in 2006, they had me start the 6-minute walk with no oxygen. That was not cool. They of course noticed that I needed oxygen. So they stopped me and put me on oxygen at a low level and kept checking the pulse oximeter monitor. They would adjust the oxygen as needed and make notes of my results each time I had to walk. I only have to do the 6-minute walk now every 4 to 8 months. I try to talk them out of making me do it though. I know.. I’m so bad. *wink*
I try to have a reward in mind for after the doctor appointment. It gives me something good to look forward to. Normally, it’s just lunch out with K or we’ll stop for ice cream. I love ice cream. Sometimes, K will just surprise me. Wish me luck!!
I hope you will FOLLOW my blog to learn more about Living On Oxygen for Life. Don’t forget about the NEED A HUG? giveaway. You can enter for your chance of a lapghan or afghan that I personally crochet. Please read the Need a Hug? post for instructions on how to enter.