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*

Well…. this is something new..

Living On Oxygen for Life 

This morning was all planned. I was going to wake up “casually early,” meaning around 9:30am instead of 10 or 11am and head off to get my labwork done for the month. You see, I still have to get monthly lab work to check my liver function because I take a Pulmonary Hypertension medication called Tracleer. However, for the past week, K has been off work due to cataract surgery in one of his eyes. He can’t lift anything over 20lbs for a week. Therefore, he can’t safely perform his job. He’s about to have his other eye worked on in a few days. 

Anyway, he’s been home and sees that I’m nearly awake when he recalls a VERY important factor about this month’s lab work changes that we were told by my PH doctor earlier this month. She wants me to have my cortisol level checked. I forgot all about that which is why it’s vital that betwixt the two of us, it’s handy that K has a memory like an elephant. Believe you me. I do not have a memory worth much at all. Even if I write things down, I’ll forget about it and then forget where I put my note once I actually remember that I wrote it down. 

So, I was scrambling out of bed, hot footing into the bathroom grabbing any color-coordinated clothing to wear on the way to take a speedy shower. K said I was suppose to go early in the morning. I’m freaking out because I didn’t want to delay my liver labs. I was running low of Tracleer and I can’t get those pills refilled until the liver lab results come back to the doctor. Thankfully, they usually get them the next day. But, I didn’t know how early I was suppose to show up for a cortisol lab. The doctor only said early AM which to me, that could be any various time in the morning. By the time I was out of the shower, dressed & ready go… K suggested that I call the lab first to get their interpretation of early AM for this new test. It was already 10:30am quickly approaching 11am (which happens to be my “I’m officially awake time. Let the day begin.”

So, I pick up the phone and call. I’m so glad I did. Before 9am, they said for cortisol labs. I hung up with a polite, “Thank you!” and then cringed. This is going to be hard. I’m going to have to drag myself out of the house early! It’s not even going to be for a doctor appointment…THAT, I would understand. But just for labs. Ugh! haha! I’m going to have to think of a good reward for tomorrow morning. Any suggestions?

I know I’ve seemed absent lately on my blog. I do respond to email, Facebook posts, comments of my blog here. I’m not gone at all. In between all of this, I am crocheting the Need a Hug afghans, which I have one to send out. Plus, K finished my second raised garden bed that I planted 8 seed potatoes in (so excited!) which leaves me with my other 2’x6′ bed & my 3’x4′ bed to plant vegetables in. I did plant 2 tomato plants already. As soon I finish planting my seeds, K will help me cover them with netting. The netting really helped last year to keep bugs (and stray cats) away. 

I truly hope y’all are doing well. Let me know how you are doing. *Huge Hugs* to all of my readers & visitors. 

Getting ready for company..

Living On Oxygen for Life

This is how K looks out for me. He’s awesome. I meant to post this last year. I just wanted to show you that there are some really great spouses out there. There are so many things that are just too hard for me to do and that’s when K steps in and takes over. I love this man.

Me: (finally lying in bed with Bipap & oxygen on totally exhausted from working along side K to super clean the house) Thank you so much for your help K.

K: (while mopping the hallway) Is the music too loud?

Me: No. Right now I don’t care about the music or the light being on. I’m exhausted. What you’re doing is so appreciated.

K: (stops mopping) This is what you wanted done.. What you needed, right?

Me: What you’ve done is awesome. You’ve gone above my expectations. Thank you.

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.

October Means Flu Shots

Living On Oxygen for Life

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.

PCV13

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.

I wasn’t ready for a change…

Living On Oxygen for Life

For those of you who read my blog and use oxygen, have any kind of breathing problem or any kind breathing device, you know life can be challenging. Life is filled with highs and lows. When you get in those high places, it feels like you are accomplishing the things you want to do in life. Unfortunately, those high places don’t always last as long as we want them to last. At least, that is how it seems to me. Sometimes the lows can be pretty low and lasts for what seems like a lot longer than I’d prefer.

Switching over to Tikosyn from Cordarone involved a lifestyle change for me. It’s been a crushing blow to my happiness. Instead of one step back in health, it feels more like two steps back. It made me really frustrated, thinking and wondering what I did wrong. It’s made me have to, once again, reinvent ways of getting things done around the house. Some of the things, K has completely taken over which adds more stress for him. Both of us were hit hard with this unexpected change in my ability level. I get short of breath from scooping a cat box (which he now does) or using a broom on the floor.

K takes good care of me and I’m grateful for his love and understanding. He’s come a long way. *wink* He stopped thinking that I was just being lazy about ten years ago. He’s always known that I have breathing problems as well as the pulmonary hypertension on top of everything else. He just didn’t realize or understand how much & how quickly the Pulmonary Hypertension would progress over a relatively short amount of time.

So now, I’m going to take care of him. I’ve decided we’re going on a much needed vacation since we haven’t gone on one in 3 years. Right now all I can think of is how good the sand will feel under my feet with the water washing over them. This will involve a lot of planning for my oxygen needs but it’s always been so worth it. I’ve already secured our accommodations and I’ve even bought travel insurance just in case we have to cancel at the last minute or if one of us becomes sick while on vacation. It’s good to have a backup plan just in case there’s a hurricane too!

We both really need this getaway. We rarely watch TV while on vacation. We leave our worries behind while on vacation too. So it’s like we’re on an island made for us.. though, technically we’re not. This is our way to get back to a healthy mind and release all the stress even if it is for just a little while.

I just wanted to let you know that I’m getting into the swing of the new changes we’ve made. I’m back to blogging and YES Klondike will be going with us on our vacation. My sister sent him back to me! Yay! Stay tuned in for more blog posts from me! Stay well everyone! I enjoy talking with you on Facebook and by email! goredrider@gmail.com is my email address for those of you who have questions or would like to say Hi!

–Christine