I’m famous!!! *wink*

Living On Oxygen for Life

Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.

I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):

My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.

Please support this effort by going to this website: “Donate now to support pulmonary hypertension research. Engage for a cure with phaware.” You could even get an “I’m Aware That I’m Rare” t-shirt to spread awareness when you donate. I highly encourage you to check it out.

After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.

Love y’all! *hugs*

Little emergencies can be big problems.

Living On Oxygen for Life

IMG_6738

This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks.  We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.

Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.

What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!

Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

November 2016

Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!

Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.

O2 spltter

O2 spltter

But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!

I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*

Sleep Study Time

Living On Oxygen for Life

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!

SleepStudy

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.

It took 25 years.. but I did it!

Living On Oxygen for Life

PROLOGUE
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.

TRUE STORY

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!

Big Tex

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.

Clydesdales dalmation horse

We also got a little turned around and ended up in the Auto Show building.

Nascar futurecar KiaRat

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.

The Beast Within…

Living On Oxygen for Life

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.

Day One… It begins… Tikosyn!

Living On Oxygen for Life

Lemmon chicken with red potatoes from my garden.

Lemmon chicken with red potatoes from my garden.

On April 26, 2016. I woke up at about 4:30 am and I couldn’t fall back asleep. That’s pretty typical for me when I have something major happening that day. I grabbed my phone while in bed and I flipped through Pinterest to try to get myself sleepy again. Hey, it works sometimes! This time, though, I came across a recipe that I found myself mentally checking off all the ingredients it called for in comparison to what I have on hand. Well, what do you know… I had everything I needed to make this Lemon chicken with red potatoes from my garden.

I hopped out of bed, threw myself in and out of the shower and then got to cooking. When I was done, I went ahead and ate some. I know it was morning but who said you can’t have dinner for breakfast? If you can have breakfast for dinner, why not the other way around, right? *goofy grin* It was pretty good! At least now I had something ready for K to eat when he came home from the hospital. By cooking, it took my mind off of having to be in the hospital for the next 3 days.

The hospital finally called. You see, first the doctor’s staff said that the hospital will call when a bed is ready for me to come up to the hospital to be admitted. Then, the staff said that the hospital will only if there isn’t a bed available and if they didn’t call, for me to go up to the hospital to wait for a bed which worried me because I can’t just sit around at the hospital with my limited supply of oxygen. I’d have to get the hospital to supply me with their oxygen. I decided to call the hospital the day before to find out which method of calling was true. It turns out that the hospital calls me when they are ready for me and they did. However, when they called, they told me a room was held for me but there was an emergency and it was given to someone else. After shuffling patients around, they called me back with a bed ready. I got up to the hospital and into my room at about 1pm lugging my bipap, my 50ft tubing (theirs isn’t as long), clothes, all my medicine (you’ll hear much more about this later!), snacks, and yes, even my yarn! And that’s when the chaos began.

Selfie in the hospital to try Tikosyn.

Selfie in the hospital to try Tikosyn.

Once in the room, I was told to change into this high fashion gown made of pure, authenticated, designer cotton (tied in the back to obviously supply my back with the most opportunity of cold drafty air). K had to help me tie the back. I mean, who can tie those things?? Really!

Day One: blood draw & IV.

Day One: blood draw & IV.

Then, I was told I had to have an IV. Oh man.. I was so not happy but what could I do about it. I begged though. I’m not below begging when it comes to an IV, you see… I’m sensitive to adhesive and let me tell you… it itched and was painful the whole time (2 1/2 days!). And then there were the sticky electrodes that stay on. Ugh! Thankfully, I actually already had a lunch tray of food waiting for me. I couldn’t believe my luck! The food I made earlier in the morning for K, I ate as breakfast. So, I was pretty hungry by 1pm. Before I could eat, I had my blood pressure checked while sitting, lying down and standing up to get a baseline. It was all normal. Everything was going along swimmingly until I hear this pulsing dinging sound which kept going off loudly. Seriously, it was loud and sometimes it was continuously. It got to one point on the first day that I was fed up with hearing it and I asked my nurse, “What the heck is that noise??” She told me it was the nurse’s call button and my room was situated next to one of the two speakers of this bell. LUCKY, LUCKY ME! *rolling eyes*

At 4pm, I took my first dose of Tikosyn. I mentally braced for impact. I just didn’t know what to expect and neither did K. The doctor did come to see me later that evening. He kind of breezed through. I was unprepared to ask any questions.. so my mind went blank. Argh! I hate it when that happens. When I took my first dose of Tikosyn, they wait 2 hours and then they do an EKG. They do this for every dose of Tikosyn you take to see if you are at the right dose of Tikosyn. They want to know that your QT Intervals are under 500. Don’t ask me what that means because I just really don’t know. All I know is if it’s under 500, we’re doing good!

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I was SO cranky the first day. I knew K had decided to not stay all night at the hospital with me and I was ok with that. I was riddled with anxiety because everything was chaotic while, at home, everything is controlled. I know what to expect when I’m home. I take my medicine at MY usual time, I sleep in my own bed, my tv has more channels (hehe!) and people are not coming and going in and out of my house as they are at the hospital. Plus, I missed my dog, Rocco. I got out my notebook and drew him from a picture I have on my cellphone. I didn’t realize how much I would like the way it turned out. Drawing isn’t really my talent and drawing it in pen…well, I got lucky that it doesn’t look like a bunch of scribbly lines.

So much more to tell you but I leave that for Day Two! I don’t know how many of you like long blog posts. Therefore, I am breaking the whole even into separate day posts. I hope that’s ok. For those of you who don’t know what Tikosyn is… it’s an anti-arrhytmic medication for my heart. You can read more about it by clicking on the link. I don’t have Atrial Fibrillation. I have PSVT (paroxysmal supraventricular tachycardia), Ventricular tachycardia, Cardiomegaly, & Secondary Pulmonary Hypertension (Functional Class III)