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.

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*

A Darn Good Day!

Living On Oxygen for Life

I had a GREAT day yesterday. Even I couldn’t believe what all I got accomplished on my own. I made it to the pharmacy and then decided, what the heck, I still have energy… I’ll go grocery shopping all by myself. I did find myself huffing and puffing my way into the store but I grabbed a cart and rolled it the short distance to the produce department while doing a little purse-breathing along the way. (Remember? K has been taking over the grocery shopping for the last 5 or 6 months. It’s been getting harder and harder for me to go along.)

I did a bit of “slow browsing” to give myself enough time to catch my breath and then away I go to shop to my heart’s content. No, I did not buy ice cream. But I did by ingredients to make cookies and maybe even turtle cheesecake. *drool* I even had fun saying hello to people I don’t even know, even the little kids. I had so much fun!!!

I knew I’d be tired when I got home because K wasn’t going to be home yet and I skipped my morning diuretics to get an early start on my day. So I grabbed a roasted chicken for dinner. Won’t K be surprised?!?!

I got home with my groceries and unloaded AND put them away! All. By. Myself!!! *super proud of myself* Next, I started dinner! Whaaaat??? How am I even doing all this??? I just don’t know. All I can say is….K sure was surprised because not only did I accomplished all the stuff I did yesterday, I even made a salad to go with dinner! Whaaaaaat? I think I scored some extra points with the salad. *grin* Who says men don’t like salad? After dinner, my energy was definitely draining. I could only rinse off the dishes but you KNOW I had just enough energy to sit down to crochet for a few hours while we watched some TV together.

It was a happy day yesterday and I hope I have another one again soon. I am paying for all of yesterday’s effort today. I’m tired, tired, tired today and when I told K that I was ready for a nap earlier, he politely reminded me that the Cowboys play at 3pm which is about 25 minutes ago. Argh!!!! haha! So, here I am with my bipap on, in bed, trying to power up for the game.

I’m happy. I hope I don’t mess up whatever I decide to make for my contribution to our family Thanksgiving dinner. It’s supposed to be something chocolate-flavored. That’s where the turtle cheesecake comes into play. *shrug* hehe!

Have a great Sunday! Lots of love to you all!!!

Up all night…

Living On Oxygen for Life

Officially, it is Friday and Veterans Day. First, I would like to take a moment to say Thank You to all of men and women who have and are putting themselves in harms way to protect our freedom and our way of life. Many have sacrificed their life to give us the freedoms that we should never take for granted. We should always remember the price those men and women, throughout history, have paid for our rights and our freedom of choice.

Last night I was super tired and ended up going to bed at 8pm only to have to get back up at 9pm to take my Tikosyn. Because, you know, that pill has to be taken every 12 stinkin’ hours! Argh! Fear not, I was still super tired and promptly fell right back asleep. That is, until now, 1 o’clock in the morning.

I’m here under the covers in the dark bringing you my late, late, night ramblings of what happened to make me so tired. Yesterday, I had a doctor appointment. I got there a wee bit too early. I had to sit in my van for nearly 30 minutes because I wasn’t sure my portable oxygen tank would last long enough if I went in early. I have a 75 pound liquid oxygen reservoir tank in my van that I use to drive around on and to refill my portable. After about 30 minutes, I went into my doctor’s office for my annual physical. Yay what fun right? Actually, my family doctor is pretty darn cool!

According to all the labs I had done about two weeks prior, it looks like I should live another few years, at least! My doctor was surprised at how awesome my cholesterol and other test results were. Yay! I can continue to eat my pop tarts! Haha! As usual, my bicarbonate was high and my chloride was low but my kidney is keeping my pH level in balance. Thank you Jesus!

We did talk about pain management. Because my lungs don’t work as well as they use to (which wasn’t that great!), my options for pain management is VERY limited. My scoliosis is getting worse in the lumbar area of my spine and causing right hip pain which can be horrible at times when I sit or stand too long. Taking a whole Tylenol3 pill (that has Tylenol and codeine) is far too much for my body to handle. I have to break the tablet into quarters and take a fourth of a pill at a time. Even that much sometimes causes a migraine and troubled breathing. Alcohol has the same effect on me now. Instead of being able to drink a glass or two of wine or alcoholic drink like in the past, I can only drink about 1/3 of a cup before my breathing is affected. I still pour about 1/2 inch of wine in a glass occasionally to drink but never go for refills. It’s just not worth it. I think it affects my heart too much which I think is causing the breathing problems.

When I got home from my doctor appointment, I promptly took my diuretic medicine because I had to skip the morning dose. Then I dove right into making dinner, meatloaf, only to find out K will be late coming home. So instead of a full meal, we ended up eating meatloaf sandwiches. We love meatloaf sandwiches!! I’m not very good at being able to coordinate having all of the meal cooked and ready to sit down at the table to eat at the same time. I just don’t have that talent. haha! K is VERY good at it. He use to be a chef. No, before you ask, he does not cook on a regular basis at home. That’s my job. I don’t know where I went wrong in this scenario because he’s really good.

For the rest of the day, I plan to spend time with K. I am thinking about making a batch of my famous peanut butter cookies. I don’t bake cookies as much as I use to because it’s become harder and harder to mix the cookie dough. I don’t have a heavy duty KitchenAide mixer but I’m hinting towards one for Christmas. I can only get so far with a hand mixer and the rest has to be mixed by hand. The hardest cookie dough I’ve ever had to mix are the Chocolate with peanut butter chip cookies. Next would be Oatmeal Scotchies. Both cookies I LOVE! There’s nothing like a homemade cookie, right?

I’ve already started my next Need a Hug afghan. The last one was sent out to Jenny who lives here in the U.S. Click Need a Hug in the menu above to see how you can get your name on the list for one of my Need a Hug afghans.

I hope everyone has a great day. Stay well and warm. It’s finally down in the 70s here!

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

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.