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*

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*

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!

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

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

Gearing up for the PH International Conference and What’s up with my heart?

Living On Oxygen for Life

I’m super excited to be going to the PH International Conference in Dallas this month. Hooray! I’ll be surrounded by so many people who have the same disease that I have. I hate to even call it a “disease” but that’s what Pulmonary Hypertension is. It’s a disease that has no cure but it’s slowing amassing some amazing medicines to help battle the symptoms that PH causes. We still need a cure. The conference is going to be a way for me to learn even more about PH. I want to actually try to find other people to have Pulmonary Hypertension who also has Scoliosis like I do. My PH is secondary to Scoliosis and Restrictive Lung Disease due to Scoliosis deforming my rib cage. Finding others like me will be difficult. Not many people out there like this. PH is a rare disease. I want to find those people and compare how they manage life with how I manage life and breathing. Maybe we could learn something from each other. *fingers crossed*

Before I go to this conference, I have to get through the next 9 days of the 10-day Halter Monitor I’m wearing to get a read on what my heart is doing. Tikosyn is not really helping my heart arrhythmias which is discouraging. The doctors didn’t believe me so I “suggested” that they do a Halter monitor to see what’s going on. We’ll find out one way or the other. Right? Like I said, *fingers crossed*

I’m actually impressed with the newer halter monitor that I’m wearing. It’s cool! I get a “Sensor” that has 3 leads and I wear it around my neck from an attached lanyard. Plus, there is the “Monitor” which is like a cellphone. When I have an “episode” with my heart skipping, I get to push a button on the screen of the monitor and go through a few questions about: What is happening? (I check: Heart skipping), What’s your activity? (I click either resting, mild, moderate, or heavy). So far, I’ve not had to click on heavy activity. I’m not crazy! haha! It’s raining and humid here. So, my activity is limited to indoors, low to minor-moderate activity because I get tired a lot faster in this kind of weather. There’s no telling what my carrots look like in my garden. I only have one orange left on my dwarf orange tree. The wind blew the others off.

If you want to see the many pictures of Klondike’s Adventure in Germany, you can view them all here… you don’t need an account to view them. My sister really did show my rubber chicken a good time so far. His trip is coming to an end soon. I’ll be meeting my sister and her family when they fly through on their way home. Maybe I should make her some more cookies! Shh! It will be a secret!

Stay well and be safe. Lots of love to you all! *heart emoji!*

–Christine

Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!