Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I’m 44 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 Hodge Podge of Topics to Talk About…

Living On Oxygen for Life

First, let me state that I met a wonderfully sweet lady Wednesday evening. She stopped me to ask about my oxygen and we got to talking about health issues. You all know that I will always stop to talk if anyone asks me questions. In fact, K went on shopping while us ladies talked oxygen. Being that it’s the Christmas season, K gets a little gung-ho in Michaels, Hobby Lobby and even Lowe’s or Home Depot where decorations are concerned. I dare not set him loose in these stores for too long because he will go hog wild wanting whatever he sees. But you know, he does a darn good job decorating. He just has an eye for what looks good. I, do not. It’s a shame because I like being creative. I have a hard time visualizing his ideas.

Anyhoo… before I get too carried away on strange topics, I’ll reign myself in and try to focus for, you, my reader’s sake. You’re welcome! *wink* Ugh.. where was I? Ok, first, the important thing. Opsumit. My PH doctor did some checking and Opsumit causes some people increased difficult breathing during the first month of taking the medicine. However, this problem, the doctor told me, is suppose to go away after the first month. Remember, this is a NEW drug. So the severe shortness of breath that happened while on Opsumit was not normal because I tried this medicine for 3 months. I don’t know why it affected me this way. It has all the good benefits. It’s not suppose to damage my liver, I only had to get lab work every 3 months, I took it once a day, and it’s in the same class of medicine as Tracleer. I really, really wanted this medicine to work for me but it didn’t. I’m not saying this will happen to you if you try it. Everyone reacts differently to different medication. I have a strange body that doesn’t tolerate cardiac and PH medicine very well. For that matter, I don’t tolerate most prescription pain medicine very well either. Lucky me! I can’t even drink alcohol.

If you follow me in Facebook, you will know that I’ve been crocheting to keep myself calm before my heart cath. Crocheting is so soothing.. don’t you think? Well, it is to me. Though, K calls it knitting but it’s not and he only calls it that just to poke fun at me. I love creating things. So, below are a few Christmas things I’ve created. I hope you have a great day (Thursday). Ohmygosh! I just realized it’s past 2am. Yikes! *hugs* to you all!

petstockings penguin

gingerbread FullSizeRender-4

Heart Cath Results!

Living On Oxygen for Life

Many of you want to know the results of the Right Side Heart Cath that I had on December 1, 2014. I always schedule the heart cath with the same doctor. I trust her and she has performed all but one of them here in Texas. I say “in Texas” because I’ve had numerous other heart caths as a child (all right side heart caths) in the great state of Indiana where I was born. Though, those childhood heart caths were performed while under anesthesia. Now, my heart and lungs do not tolerate sedation. As an adult, I have all my heart caths without taking any kind of medication. Plus, I don’t have an IV. I know… brave.. aren’t I? *wink* At first, I was a little scare because I’d never had one without being asleep. But now, it’s something I’ve grown use to, except the numbing of the neck part. I will not lie to you…that freaking hurts. I hope I’m not scaring anyone.

This year was a very important heart cath. I was out to prove something to the doctor… or at least I was hoping to prove my hypothesis..? theory? Whatever the word is.. I was out to prove my point. Since 2006, I have been taking Tracleer, though, throughout the years until now, I’ve tried numerous other PH medicines. I’ve tried Revatio (Viagra), Adcirca (Cialis), Letairis, Tyvaso, Opsumit and even Flolan during my first heart cath. The only PH medicine that my body can tolerate to a degree is Tracleer. I say to a degree because I do well on a half dose (62.5mg twice a day) but when I up the dose to the full adult therapeutic 125mg, I start having problems.

I have been taking Tracleer for the past 8 years. Over those years, I’ve come to know how my body performs while on this medicine. K and I both repeatedly told my doctor that when I took the half dose of Tracleer, I did well. But when I took the full dose, my breathing started having problems with more shortness of breath, lack of motivation, and tightness of my chest when I exerted myself. I got frustrated with the doctor and then I got mad. So, I switched to Opsumit, the newest PH medicine available. That turned into a fiasco. So, back on Tracleer I went but the doctor finally started to really listen to what I was saying. She looked up the weight cutoff for a pediatric dose and found I was very close to the 40 kilograms. All this time over the past 8 years my doctor told me that the clinical trials shows that Tracleer only works for adults on a full 125mg dose. But in the doctor’s office, in August 2014, we came to a meeting of the minds decision that I was going to try Tracleer at the pediatric dose of 62.5mg twice a day for the next 3 months. At that time, I will agree to have a heart cath to see if the lower dose will work for me since I’m only 100lbs.

On December 1, 2014 I finally had the heart cath. I wasn’t very excited and I sure was nervous. I really wanted the half dose of Tracleer to work. I wanted to be right because if I wasn’t, I’d be going back to full dose. After all, the full dose lowered my pressures. It helped my heart but hurt my breathing. Grr… It seems like I can never win! The doctor comes into my room to talk about the paperwork and to mention she will have a Resident working with her but she reassured me that if he has trouble then she’ll step in. I was a little nervous but it was nothing new to me. So, I told her… “Go Team!” haha! She laughed and then told the Resident in the OR what I said. If anything, I’m very silly. I am finally chauffeured back to the OR room while chatting it up with the driver of the bed. I mean, pushing those beds looks hard! But the woman said the bed has a steering gear. Who knew?? That’s pretty awesome! Once I’m in the OR, I get through the heart cath after being brutally (*wink*) being stabbed in the neck repeatedly to numb the area. Once I’m wheeled back to the recovery where where I started out before the cath, I was lucky enough to have my followup appointment in the room so that I wouldn’t have to go upstairs to the clinic. My doctor is one of the very few who does this for her patients. YAY!

The staff gave me a printout of the results from my heart cath, but seriously, it isn’t something that I can figure out very easily. So, I had the doctor explain some of it. Here’s mine compared to a normal heart.

heartcathresults

Picture from The Merck Manual.

Picture from The Merck Manual.

Representative right heart O2 saturation =75%
Representative left heart O2 saturation = 95%.
Atrial pressures are mean pressures.
AO = aorta; IVC = inferior vena cava
LA = left atrium; LV =left ventricle
PA = pulmonary artery; PV = pulmonary veins
RA = right atrium; RV =right ventricle
SVC = superior vena cava.

The PA (shown in my cath results) pressure is 52 which has stabilized over the past 5 years. So the doctor isn’t too concerned about it. She was happy that the blood coming back from my body has a 71% oxygen saturation. It is suppose to be above 70%. It is considered my “reserve” oxygen in case I have trouble. The FA, which is the blood that comes from the lungs and goes out to the body and it is showing 100% which is good because I am wearing 6LPM of oxygen during the heart cath even though it shows on my results paper as ROOM AIR. As you can see, my heart has some problems but I’m managing. I rest when I need to and play when I want to. *wink* Now that I’m older and supposedly wiser, I don’t do as many stupid, reckless things anymore. I don’t touch alcohol unless I want to try a sip of K’s cocktail at a restaurant, I don’t let myself get overly tired often by staying up past 3am, and I, for sure, am careful about what I eat. Although, I did eat pizza last night. I already feel the sodium at work. Darnit!

With these heart cath results, I feel relieved. The doctor agreed to continue the Tracleer at the half dose of 62.5 because of my weight and the fact that my pressures show that my heart is stable even at the lower dose. I did agree that at anytime I find myself starting to have more problems, I can always up the dose back to the full amount. I may be a rebel but I am NOT stupid with my health. My doctor was ok with this and K and I left happy and I felt this battle was worth it.

I can’t wait to show you what K and I have been up to with Christmas decorations! Next post… I promise! Stay warm everyone. You can always email me at goredrider@gmail.com Be sure to FOLLOW MY BLOG so you don’t miss a thing. THEO… I have NOT forgotten you. *wink*

A good read… trust me..

Living On Oxygen for Life

You know I love writing on my blog about living on oxygen and all that it entails but when an opportunity comes along where I share more of what I know to the world, of course I’d jump at it. I was approached by another blogger, Johan, who writes an incredibly wonderful blog. It’s not about his life. He took blogging to a whole other level. Have you ever been curious about things? Johan interviews people who have incredible stories to tell about all sorts of subjects. Sad stories, adventure, war, inspirational people, space travel… just a lot of interesting interview articles.

When I first visited Read an Interview and started reading the interviews, I thought…these are good! They are something that easily could be in a magazine. So, Johan, emailed me a list of questions pertaining to living with Pulmonary Hypertension and the equipment that I use to survive this incurable disease. I dug deep with this one. It’s the first time I’ve ever done an interview and I hope you like it. If you would like to read it, you can find it here: Living with Pulmonary Hypertension.

We are a strange couple…

Living On Oxygen for Life

Sorry! I started writing this on November 8th and I’m just now finishing it up for y’all. Enjoy!

Yesterday was amazing! I got up early. No, I am talking EARLY, like, before the worms wake up to be eaten by the birds kind of early. K and I are complete opposites. He calls us ying and yang. We are opposites but we fit together in a weird way. He’s OCD and I’m ADD which can cause some problems if you can well imagine but we have this special quirkiness that makes us work.

You see, the day before yesterday (Thursday), I had to take K to his eye exam where he had his eyes dilated so he needed a ride home. I spent the time (boring time) waiting in the lobby of the optometrist wondering just how long it takes to do an eye exam. That’s when a little boy walks over to me and ask what was in my nose (referring to my tubing). I told him simply that I have this tubing that gives me oxygen from this tank. It helps me breathe better. I then, of course, complimented him on getting some Superman stickers on his shirt. Later, I overheard one of the receptionist talking about her son having respiratory problems. She didn’t get her son a flu shot last year and she was planning on getting him one this year and the pertussis vaccine. She was telling the other receptionist that her son can get a simple sore throat and then overnight she’s having to take him into the emergency room with something so much worse. I told her that I was the same way especially as a child. (I know… I butted in and it’s probably a rude thing to do.) I have to catch a sore throat early to prevent getting worse since I also have respiratory problems. We talked about 20 minutes and then K came out ready to check out. That’s when we saw one other receptionist’s nifty watch which we oooh’d and ahhh’d over. The optometrist told him that he needed progressive bifocals. He feels old now. Poor guy.

Anyway, before I get way off subject, let me steer back to what I’m trying to tell you. Ok, let me regroup my thoughts for a second…. Oh yes! I woke up early on Friday, took K to work because his car was left at his mom’s house and I needed my van to go get my monthly labs done. Oh the joys of taking Tracleer. Just before he got out of the van at work, he said, Chris (that’s what he calls me), let’s have a great day. And I was like…. Okaaaay… In my mind, I was thinking of all the things I had to do that day but then he did something fun. He raised his fist and told me to fist bump to seal the deal but I went one step further… haha! It makes me laugh just thinking about it. I said we have to “Wonder Twin activate or it won’t count with the explosion sound and fingers spread out afterwards. You know what? He did it and that made the beginning of my day SO awesome!

I drove all the way to get my labs done and found out that my standing orders were NOT in their system. They were NOT faxed according to their computer. I had emailed my nurse just 2 days prior to confirm that they were faxed and she said yes they were and that I didn’t need to take the paper orders in. Just go get my labs done. Big, big mistake. Next time I will take my paper orders. Phone calls had to be made from the lab and I ended up sitting around there for over an hour. However, I rewarded myself with a Egg McMuffin and a hash brown from McDonalds and all was much better afterwards. I went home watched a Netflix movie, ate lunch and took a power nap because I still had to go pick K up from work. By the time I was ready to go at 2:30 o’clock, K texted me saying start heading his way and, of course, there was a major traffic jam. Typical! Once I got through the traffic, I burned rubber down the highway, but safely! I arrived right on time! Wheww! Then, he informed me that the place we were ordering his glasses was located in the mall. UGH! The mall???? I really wanted to stomp my foot but remembered that were suppose to have a Wonder Twin power good day. So, I put on my happy face and said, “Love to! Let’s go!”

K was pretty sure the Lens Crafters store was located near Dillard’s. So, that’s where we parked my van. We decided to not use my wheelchair because, hey, the store is just right there, right? Oh heck no. We breeze through Dillard’s to only find out from the directory that the store is on the other side of the freaking mall. I told him that I could do this but we may have to stop here and there. As we’re walking through the mall, we were looking in each store and I pointing out the boots and outfits I like or thought would look good on me. I’m not a shopper. I don’t like buying clothes for myself until I’m in clothes buying mood which is not very often and then on top of that, I’m pretty frugal. K hates that. hehe! We were walking and walking and walking… *sigh* I would stop to look at the clothes in the window of a stop to give myself a break from walking. I get short of breath while walking the mall. I was saying in my head that this outfit looks good and that one over there was awesome but then we get to a store that made us both ask each other if we were getting old… I mean, what were those designers thinking or smoking? Ugh!

Finally, we get to Lens Crafters and it took forever for K to pick some frames. We sit down with a sweet young lady and we got to talking. I don’t know what it is about us that brings out the fun side of people but this woman was telling us that she just adopted a stray kitten that she named Ms. Tickles who happens to be a boy kitty. The poor thing is going to grow up having some sort of complex. We had a good laugh in that store. That is until the sticker shock freaked me out. Yikes! We took so long in the store that I darn near ran out of oxygen in my portable but I made it back to the van. It would have taken K longer to go get the van and drive it around the mall to pick me up than for me to just walk back.

It was a good day but busy. Home Depot was our next stop and I think we scared a woman at first because we were in the “self checkout” lane because nothing else was open. Typical! Anyway, there was a security camera screen right there where you scan your purchases. I pointed it out to K and I was waving and smiling at it like a looney person, I’m sure! That’s when K stepped behind me and strangled me like Homer does with Bart Simpson. I was playing it up good too. I should’ve gotten an Oscar! It was so funny. Well, until we realized we had an audience. The poor lady. I looked at her laughing and then pointed at her saying, “Witness! I have a witness!” Of course, she realized that we were playing and so she told us that she didn’t see a thing. haha! We are a strange couple. I mean, K lets me stand on the end of the shopping cart to push me around the store so I won’t get overly tired. The only thing that could have been better was if my portable wouldn’t have frozen up when K refilled it from the reservoir that I keep in my van just before we went to eat dinner. Life sure is crazy. Isn’t it?

I did it!!

Living On Oxygen for Life

I really miss Photoshop. Seriously, I do. I really love taking pictures and also creating neat-looking graphics. So, I fell in love with Photoshop when I had a PC computer. Now that I have a MAC, I don’t have Photoshop. I looked for an app to create something to bring awareness to this month’s Pulmonary Hypertension Awareness campaign. You know, something subtle but eye-catching. Naturally, my picture was in my creation. hehe! Look to your left. Stunning, isn’t it? Ok, don’t laugh. I could only find a very basic app to put text on my photo. So sad. But! It gets the message out there and that is what’s most important. For those who need more information on Pulmonary Hypertension please go to: Pulmonary Hypertension Association.

We need YOU to spread the AWARENESS of Pulmonary Hypertension!

Living On Oxygen for Life

Hello to November! It’s finally cool weather. I never thought this day would come here in Texas. There is something else exciting happening in November! Oh yes… exciting, indeed! November is the month designated for Pulmonary Hypertension Awareness. So, get out your Periwinkle or Purple clothes and support PH for the cure!

Seriously, we need your help. Did you know that Pulmonary Hypertension is a incurable disease… that means, there’s no cure.. YET! With YOUR help, by spreading the awareness of this disease, you can, not only help others to become educated about Pulmonary Hypertension, you can be saving someone’s life. Did you know that Pulmonary Hypertension is often misdiagnosed? For example, a lot of people with PH, before being diagnosed, just think that they are out of shape or their doctors think they have asthma or just extra tired. PH is a serious disease that can kill within 3 years of being diagnosed without medical treatment.

I don’t mean to scare people. I mean I have this disease. There are only 12 approved medications to treat Pulmonary Hypertension. That’s not nearly enough. Double lung transplants can cure you but how many people out there have signed up to be a donor? Are you one? If you are and I could be approved to have a transplant (which I can not), I would thank you from the bottom of my heart.

There are several ways to read up on Pulmonary Hypertension. You can visit Pulmonary Hypertension Association or visit PHAware.

I want to add a SHOUT OUT for two websites that sell some pretty awesome PH jewelry. PHantistic Jewelry and Josephine’s Jewelry. I’ve bought from both of these lovely ladies and they make some awesome jewelry for a price you can’t beat! Support Pulmonary Hypertension Awareness and wear that periwinkle or purple!!!

Supporter of PHA
Women are 4X more likely to develop idiopathic pulmonary hypertension (IPAH) - know the symptoms - infographic

Random Picture Day #12 – The Oasis

Living on Oxygen for Life

Here it is as promised! My little oasis. I really love it. It’s not fully decorated yet but the lights, fan, and mostly all of the furniture are on it. The furniture was a gift from my mother-in-law! Totally awesome of her. I think she understood what K was trying to do for me. We’ve had several neighbors stop by at night asking about our patio and its lights… even a car driving by slowed down and K could them say, “Oh my gosh.. would you like at that?” K was up on a latter hanging lights at the time.

Maybe you are wondering how this patio can help me. It’s an encouragement for me to get out of the house. It motivates me to keep taking care of my plants. K and I have a deal where I am the only one who water my plants. He bought me a Pocket Hose which is lighter than watering with a normal, heavy, hose or a watering can. Before you say it… I’ve yet to have trouble with the Pocket Hose since I don’t turn the water on full force and I also drain the water out of it when I’m done with it. By getting out there to tend to my plants, I get a little exercise as well as a sense of accomplishment of seeing my plants, trees and fruit grow. I can’t tell you what that does for me.

We just hung the party lights!

We just hung the party lights!

I don’t know if you can see it but there is a ceiling fan hanging. It’s turned on by remote. The ceiling fan was a must because K didn’t want me to get overly hot outside. The pergola has a Polygal covering which not only keeps the rain off the patio but it shields some of the harsh sun rays off.

My plants

My plants

Can you see my dwarf lemon and lime trees? Not shown in this picture are my apple tree, herb plants and my jalapeños. This gardening thing is fun but can sometime be frustrating since there are these little things call Avids. Grrr! I want to grow Spinach next!

And finally a picture of ME! This picture is of me on the day K and I took my mom back to the train station for her train ride home. I was thinking… “Awh ma…. do you really have to go home?” *wink* We had a great time watching lots of movies!

oh mom

Take care of yourself! Let me know if you have any questions about me for a blog post or for the Q&A page! I hope you got your flu shot already! *hugs* to you all!! Happy Halloween!