When I have a surprise burst of energy…

Living On Oxygen for Life

Happy November everyone! I’ve been busy the past week. For the last 3 days I’ve had a burst of energy. I took advantage of it and did some cooking everyday. I started the first day with my trusty crockpot and cooked 2 whole chickens at once! The peeling & chopping of carrots, garlic cloves, & celery took a while but it was the chicken pickin time that took the longest and wore me out. I saved the broth and cut up the rest of my carrots and celery and put those in the fridge for later.

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The next day, I decided to make a Canadian Bacon and Swiss quiche that my older sister had made for us when K had his eye surgery and she came down to help me. She told me she used the Betty Crocker recipe for Quiche Lorraine but used Canadian Bacon instead. I tweaked that recipe by using 5 eggs and only 1 1/2 cups of heavy whipping cream. Plus I used dehydrated onion flakes. My stomach handles the dehydrated onions better than the fresh onions sautéed. Don’t use pre-shredded Swiss cheese. Get an 8 oz block of Swiss and shred nearly half of it. Prepackaged shredded cheese has an additive in it to keep the cheese from sticking together. The quiche was awesome. I believe the secret ingredient is the 1/8 tsp of cayenne pepper.

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The next day I made homemade chicken noodle soup with the chicken stock from my crockpot. I skimmed off the solid fat from the top of the jellied stock and used about 2 T of it to sauté the carrots and celery that I had already chopped up. I then heated back up the stock to a liquid state in the microwave to strain through a fine mesh strainer. I used the stock plus a 32 oz carton of Swanson’s chicken stock and one can of Swanson’s chicken broth. No water added! It really turned out excellent with egg noodles (thrown in during the last 10 minutes of boiling), salt, pepper, cumin, & thyme.

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Today I was hoping to make something easy I have a recipe from a friend that uses a carrot cake mix and one can of pure pumpkin to make muffins. Sounds yummy! But I feel extra tired today. Boo… I’ve been on such a roll!

I’m freezing half the chicken noodle soup in 2 separate serving sized containers and I already froze the crockpot chicken in 2- 10.3 ounce packages for later when I feel the urge to cook.

I’m starting to think of cooking as what can I make for tonight’s dinner that I can make extra to freeze for the days I’m not up to cooking. Meatloaf is handy, chicken enchiladas or just the meat mixture prepared and froze that can be used for tacos or burritos. Beef tips and gravy freezes well too (see below) and K loves it with rice that we make the night we eat it. On the days that I know we have leftovers to eat for dinner, I’ll sometimes prep a meatloaf to freeze before baking and that way it saves me time and energy when I just don’t have a lot of on bad breathing days.

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So, maybe later I’ll get up from my nap and make those muffins which will be baked in my mini muffin pan OR I’ll make Rice Krispie treats. Either way… yum!

Remember… November is PULMONARY HYPERTENSION AWARENESS MONTH. So, Be Aware for those of us who have PH that we are RARE! For more information about Pulmonary Hypertension go to Pulmonary Hypertension Association Organization

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My adventure today…

Living On Oxygen for Life

This was my adventure today. I made cinnamon swirl bread because K asked me to try to make it. It came out a little muffin-topped but when it cooled down a bit I cut a slice off and ate it warm with butter. It’s delicious even though I forgot to add salt. Oops! I read that it makes great French toast. Uh, who doesn’t like French toast???

From start to finish, this bread took me 3 hours to make. While I waited for the rise time to finish, I rinsed the dishes I used and ran a load of laundry through the washing machine. I’m still getting use to our new high-efficiency washing machine that looks like it barely uses enough water to dampen the clothes and has no real clothes agitator. Is it just me or do you wonder how or if the clothing even gets clean? It boggles my mind.

It’s definitely quiet time now at 5:30 pm and I’m ready for a power nap. So, I’m going to strap on my bipap machine with my oxygen and lie down to recharge enough to make dinner in about an hour or so. It feels like it’s been a long day.

I hope everyone has had a good day so far!

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.

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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*

We all need a “Me-Day” occasionally…

Living On Oxygen for Life

Mondays aren’t always full of madness nor do they feel like a train wreck waiting to happen. My Monday, this week, is filled with things that “I” want to do for me. You know… I’m having a “Me-Day.” Sounds like fun, right? I try to have a Me-Day once in a while. It’s something that helps me keep the worry and anxiety from life.

What do I do on my Me-Day, you ask? Today, I’m relaxing (sort of) while I watch Ripley (aka: Sigourney Weaver) kick some Alien butt. You go girl! I crocheted some today and I’m even thinking about making cookies too! But really, I thought I’d catch you up on what’s going on in my life lately. I know that not everyone uses Facebook (gasp!) and that’s where I sometimes post some of my daily goofy life stuff. Though, if you look in the right column of this blog, you can read those Facebook posts.

Lately, I’ve been getting my Summer project ready. You may know that last Summer’s project was for me to successfully keep my new dwarf lemon and dwarf lime trees alive. I’d like to announce that I have achieved this goal, shocking both K and myself. I even got 3 limes from one tree and currently I’m praying hard for the one lemon that’s growing to hang on!

This Summer, to keep me active, I’ve expanded my dwarf orchard (that’s what I’m calling it now!) by two more dwarf trees. I’m so excited to get them planted in half-barrel pots. One is a 5-in-1 dwarf apple tree and the other is a dwarf peach tree. I’m also planting a Raspberry bush and I started some tomato and cilantro seeds.

Maybe it may seem like too much for me to do but I explained to K that it’s what will make me happy and keep me from becoming sedentary. Being on oxygen and having shortness of breath (SOB) symptoms often, it’s very, very important for us oxygen users to stay active. So finding things that I can physically do while being safe at doing them can help maintain my level of health.

Pretty soon, since I live in Texas, I will have to start getting my body use to the Texas heat by starting with going out in the heat everyday for about five minutes. Texas is already starting to warm up into 80s. So slowly I will I increase the time outside before Summer rolls around which seems like mid April here.

Don’t forget to follow my blog so you won’t miss a post! You have 5 days left to enter the March Need A Hug Giveaway. Email me your info to enter. If you use oxygen and/or use a Bipap/CPap machine, then this giveaway is for you! Have a wonderful day. Give yourself a Me-Day!!! Love to you all!

I’m home from New Orleans!

Living On Oxygen for Life

Life is good! You like my festive Christmas background? Well, I’m home from my little road trip to celebrate my husband’s birthday. He chose what he wanted to do which totally surprised me. He considers his birthday as just another day. That is so wrong! Am I right or what? Every birthday is very important! Maybe it’s a guy thing. What do you think?

Well, K chose to return to New Orleans because we kinda fell in love with the place. It’s filled with rich culture and so much history that we couldn’t possibly absorb it all on our previous stop over trips on our way to Destin, Florida last September. This time we visited different locations within the French Quarter and also took a VIP City Bus Tour. The tour alone taught us so much, especially about New Orleans burial process (very interesting!), the effects of the Katrina Hurricane, and some of the history behind the St. Louis Cathedral. So a shout out to Henry our tour guide!! Thanks mister!

It was really humid in New Orleans and I was plagued with shortness of breath and some serious killer headaches periodically. I was wheeled around in my handy-dandy wheelchair. We didn’t get a chance to brave riding the street cars this time but I really want to try it. That is, if we can figure out the schedules of those darn things! Below are four pictures of our vacation.

St. Louis Cathedral

There were candles in the entrance of the St. Louis Cathedral and close to the alter. So, K took my picture there.

Jackson Square

This was taken from within the Jackson Square which was named after the President Andrew Jackson. In the background you can see the St. Louis Cathedral.

Trees in a Park

I love photography but I hate it when I’m tired because I don’t concentrate enough to get the best picture of something so beautiful. This was in a park located near the St. Louis Cemetery No. 3 which we visited while on our VIP City Bus Tour. I got lots of pictures while in there but I didn’t know if you wanted to see those!

Zoltar

Ok, I couldn’t help taking a picture of this guy. The famous Zoltar! He’s like the one from the movie “Big” with Tom Hanks. Who doesn’t like that movie??

On another note, it’s been very, very cold here in Texas. I’m talking below freezing and now K is stuck at his Mom’s house *snicker* because it rained freezing rain and sleet. It’s a mess here. Rocco is missing his daddy something fierce. The poor little guy. Yes, yes, I miss him too but at least I get to talk and text to him. My cat Mary was crying for him this morning around 5am which is when K normally wakes up for work. The poor girl. She’s so loyal. Thankfully, the power has not failed here but K’s mom’s house has been without electricity for a whole day. Man, I am so darn lucky. *Knock on Wood* and *praying to the good Lord above!*

Everyone stay warm! Be well. I’m about to grab this great book I’m reading and dive back into it. I first read Everneath and now I’m reading Everbound. I can’t wait to read the 3rd book! I download ebooks and audiobooks from my local library straight to my cellphone because I read so much that I couldn’t afford it otherwise! Books are expensive! haha! Have a great day!

Life After the Tyvaso Trial Run…

Living On Oxygen for Life

Many of you know that I had tried Tyvaso. It’s an inhaled medication that I had every intention of trying for a good 3 months to see if it would help improve my shortness of breath (SOB) and low energy level. I was skeptically optimistic about this medication only because of two reasons:

    This medicine has to be enhaled 4 times a day.
    Each medication the PH doctors have tried me on with the thought that it would “improve my SOB,” it didn’t.

Yet, I still had hope but I only lasted one week on Tyvaso. I read that others are taking this medicine. So, what’s going on with my body that makes me not able to tolerate this stuff? I don’t just have Pulmonary Hypertension and Heart problems. There’s the complication of Scoliosis as well.

Now that I’m off Tyvaso, I’m back to my living life happily. Yes, I still have shortness of breath and I tire easily. I started feeling better within 24 hours of stopping Tyvaso. Within, 48 hours, I was back to smiling and planning the drop-off of my crocheted afghan donations. Honestly, within the week of taking Tyvaso, I had nearly given up hope that I would be able to volunteer. So, here I am. Happy again and feeling full of life! YEA ME!