In September, I'm going for an Echocardiogram to mainly check the pressure of the right side of my heart. If it gets any higher, then my doctor may add another medicine. Right now, I'm just on Tracleer and Symbicort. The new medicine is called Adcirca (tadalafil tablets) which is like Viagra. This new medicine is almost as expensive as Tracleer but there is a program that I could enroll in that caps the co-pay at just $20. There are some eligibility issues with this program. I'm not going to worry about it until after I get the word from my doctor saying I'd need to take it. Why worry myself over it right now, right?

With all this being said, I'm still stable health wise and I really did well on my vacation last month in Florida. It was a glorious time and the road trip was fun! I hope everyone is using great caution with the heat of the Summer. It's pretty brutal out there.

Drink lots of water when you have to be outside and stay in a cool, air conditioned environment.

Imagine my not so big surprise getting some information in the mail about Medicare changes with Durable Medical Equipment in my area. If you have Medicare or Medicare Advantage Plan, you'll want to contact visit http://www.medicare.gov to find out:

1. If you live in a ZIP code that is included in this new program.
2. Find out which suppliers are Medicare contract suppliers to make sure Medicare will pay for your medical products and services.

The new program starts January 1, 2011 in 9 areas (and 13 states across the US).

In other news, I'm really excited about Thanksgiving and Christmas coming up! Though we won't be having Turkey for Thanksgiving (totally inconceivable!), I did get a coupon for a FREE 12lb turkey from Krogers and my electric company! Who knew that paying those high electric bills would pay off someday with a FREE turkey! Ok I'll admit it. I've never cooked a turkey. I'm a little nervous about this turkey adventure. I'll be cooking it sometime between Thanksgiving and Christmas. So, wish me luck!

I got my flu shot on November 1st this year. At least that's over with... WHEW!!! I'm pretty sure I need a pneumonia shot too. I think it's been more than 5-7 yrs. I should really start writing these things down.

Well, I did it. I've hired someone to help me clean my house. I just can't do all the harder stuff anymore. Those things are the vacuuming, mopping the floors, scrubbing the tub and changing the bed sheets. It's helping with the sense of me becoming overwhelmed. I feel as if I can keep up the house better with help. There's no shame in asking for help when you need it.

Wow, this year we hit the road again for a special adventure that never fails to be exciting. We first loaded up our vehicle to it's fullest capacity with my oxygen, bipap, luggage, snacks, a ice chest, and a wheelchair. This time we brought along my new wheelchair. My husband has finally decided to accept that I just can't walk long distances anymore and have fun too. So, the wheelchair is here to stay. Doesn't mean I use it all the time. I still need my excersize!

We first headed, using the "scenic route," to Austin, TX. We made a wrong turn and ended up taking a shortcut. Yea for me because this scenic route was taking FOREVER! haha! In Austin, we had fun standing on the Congress Ave. bridge waiting for about 1 1/2 hours for the bats to fly out and feed. However, since it was rainy this Summer, there were plenty of bugs for them to not have to compete to eat. That meant, they didn't fly out but just circled around under the bridge. By that time it was too dark to take pictures because I forgot my tripod. Dangit! Probably would have been blurry anyway.

We also went to the State Capital where it was unfortunately under construction. There was scaffling all over the dome of the building. We took pictures posing with Mr. Chicken sitting on a cannon! Below is a link where you can see a few of my pictures I uploaded! At the capital, we had a little funny mishap. Mind you, we are new at this wheelchair thing and my husband said, "I'm going to try something..." (we were on a slight incline) Well, I didn't know he was going to let go of the chair to take a picture! Here I am rolling down the hill surprised and wondering if I should grab the wheels and possibly break my acrylic nails (it's a girl thing guys) or what? Luckily an iron park bench stopped my chair. My knee developed a nice bruise from that! OUCH! lol! Needless to say that when my husband wants to stop, he tells me to hit the brakes! haha!

After Austin, we drove down to Corpus Christi, TX. OH MY GOSH! LOVED IT! We stayed at the Radisson Hotel there on the beach. It was a clean beach and the water was like bath water. We stayed in a room that faced the Gulf of Mexico and had a balcony. We stepped out onto the balcony and looked to the right and there was the USS Lexington aircraft carrier. Yep, we toured the first level of it. I could do the rest because the climbing would have been too much for me. I was disappointed but I wasn't going to chance it because it was so humid in Corpus. We also went to the Texas State Aquarium which was AWESOME!

We then drove around and of course got so turned around because all the streets are one way for the most part. Finding the Landry's Restaurant (HIGHLY RECOMMENDED) was hairy but the way back to the hotel (a different way all together) was even more baffling. Thank goodness for our iPhones. Wheww! We also drove out to Mustang Island. We wanted to drive onto a side road that led to the actual Gulf (not the bay where our hotel is located) was. The first road we turned onto we saw a couple of young guys with their car stuck in the sand. Well, we stopped our car to help them out but parked it way way away from the sand. My husband is pretty smart. We had that happen to us about 17 yrs ago in South Padre Island, TX. Yikes! 

We had a lot of fun this year on our roadtrip. I was pretty tired throughout the trip but held up ok. It took about 2 weeks to gain my normal feeling of wellness back after we got home.

Here are the pics: Click here to view 4 vacation pictures  (let me know if this link doesn't work.)

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Once again, it's that time where we hit the road for vacation. Last year I went to Las Vegas and then onto California. Yes, it took a bit of planning where my liquid oxygen refills are concerned but it was worth it!

I have an iPhone and I found a nifty app that tells me the altitude of wherever I'm driving into. It's called GPS Tracker. We also used this app to have my husband's parents and my friend know exactly where we are at on the road at any time they log into the particular website to see the map. Every so often, while on the road, I would turn on the GPS Tracker and it would pinpoint our location to show up on that web-based map & give me the altitude of our location. (We took a pulse oximeter on that trip and steered around the mountains as much as possible) My friend & in-laws really thought it was great.

When I travel, even alone, I always let my family know exactly when I leave, when I make a pitstop (always at the same locations when driving up to Oklahoma), and finally when I get to my destination. I am freakish about safety. It came in handy two weekends ago, when I had a blowout. Don't worry. I didn't have an accident. Wheww but I ended up at the halfway point between home (where my husband was) and my sister's house. Thankfully I had Triple A which I really recommend for all disabled travelers.

For my next roadtrip coming up, we are not going too far away. I really am excited. We will be taking Mr. Chicken (our roadtrip mascot) along as usual. I finally broke down and bought a wheelchair at Amazon.com for only $143! I think I got a deal because it included free shipping! Wow! We'll be taking one 100lb tank and one 75lb tank of liquid oxygen and my little 3liter oxygen concentrator. Hopefully, I won't need a refill but I notified Lincare just in case. They notified the Lincare in that area that I may need a refill.

When I get refills on the road, I go to the Lincare location. They do not come to me. I chose to do it like that. We have to be at the Lincare when they first open up (usually at 7:30am). They all have been really nice about filling my tanks when we do it this way. I just have to call ahead a day before, at that particular Lincare, to let them know I need a refill and that I will come to them in the morning before their driver takes off for his route.

I also take an extra bipap mask, extra tubing & canulas, and make sure I don't ever forget to bring along the splitter that joints two canula tubings together so that I can use the liquid tank and the concentrator together. It saves me liquid oxygen that way. I set the liquid tank on 2L and the concentrator on 3L to give me my prescribed 5L/min. Pretty smart huh?

Hello,

I'm sure you are wondering why I'm posting something about quilts on an oxygen blog. Right? Well, I met these two wonderful people who like to quilt and one of these ladies uses oxygen just like me. The mother and daughter team has a quilting hobby and they make the sweetest hand-made quilts. Please check them out at:

design2love.blogspot.com

All things are going well with me. I've been staying very active even though it's hot, hot, hot outside. It's almost time for my next Heart Catherization which I'm dreading. I sure wish I could have MRI but that darn rod in my back prevents me from having one. Darn that Scoliosis!! Grr!

 My husband and I are planning another roadtrip! I so can not wait to get out on the road with my Mr. Chicken as our mascot! haha! I'll keep you posted!

I was visiting my sister and her newborn baby. My sister showed me the Cpap gear that her baby used in the NICU of the hospital when her Oxygen Saturation dropped. I was so intrigued by the dainty size of it compared to my BiPap mask. I had to show you all. The nasal prong part of it plugs into the actual mask that covers her little nose. It looks like something you'd put on a doll!

I had a GREAT time at my sister & her husband's house. Their daughter is growing fast. I've been at her house for a week each month for the last two months. I think next month will be my last month up there until Christmas because the baby is getting too heavy for me to hold without wearing me out so fast. My sister has been great in including me and having me up there while my niece is still small. She weighs about 10 pounds now.

It's really rewarding to know that I can help them out with doing the dishes, feeding and caring for my niece and doing laundry. Though, it takes me a few days after I'm home to regain my energy. It's worth it though.

Holy smokes. This is a rough month for me. My husband and I took his parents to dinner last Thursday and that went well.. I had plans to go to the movies with my husband last Friday. Early Thursday morning, my brother's cat (who we were permanently babsitting) decided to take a nose dive healthwise. It was very unexpected and sudden. This cat weighs 20 pounds.. I kid you not. It was a crisis! So, I finally managed to get him in the carrier and to the vet. Mind you, I was carrying the pet carrier, my purse and my liquid oxygen tank (8 pounds) into the building. I was ready to expire! Anyway, the cat had to be put down. It was sad.

Later that morning, I realized it was O2 refill day. The guy shows up any given time. So, I had to wait for him. All I wanted to do was take a nap because it was SO humid outside. Well, my husband beat the O2 dude to my house. I asked him to wait for him for me so I could try to take a little nap before left. Didn't really work. I laid down with my bipap and oxygen on for about 30 mins. Couldn't sleep. Too keyed up over the cat dying.

Anyway, we made it to dinner with the folks and had a good time. Yep, I was tired. So, Friday rolls around and we were planning to go to the movies to see "Knight and Day." It was ok. But when I got up to leave the theater which was in the mall, the migraine hit. I knew I overdid it. Too much humidy and not enough rest. When I got to the car, I threw up all the way home. Yep, it was tragic.

The good news is that the headache was gone the next day but I took it easy in bed for most of Saturday because I knew we had to go to my husband's sister's house for the 4th of July. What a week!

Summers are HOT, especially down here in the South where I live. It's a big adjustment for me going from the cooler/cold weather to the Summer heat and humidity. It takes me a good month to be able to handle going outside and being able to breathe without feeling totally exhausted. While I'm out runnin around, I do only one errand at a time per day at first. Once I start feeling as if I'm able to withstand the heat (I always bring water with me to drink!), I add an errand to the list of things to do while I'm out driving around. I always pace myself. If I don't think I can get them all done, I leave it for the next time. I feel it's important not to push myself during the Summer months. It's just too hot. Air conditioning is so important for me. I have to be in an controlled air conditioned environment. Humid air makes me feel as if I'm breathing through a straw. It sucks, no really, it does! Currently, I have my dehumidifier (it's a Kenmore machine) that I use in the family room when I have trouble with the humidy. It's great! It sucks all the moisture right out the air and I have my husband drain the bucket when it's full. It keeps the area of my family room, kitchen & dining area at approximately 40% humidity. Not bad.

As for my back and hip pain, the doctors can't find anything wrong with my spinal cord or vertebraes. Wheww.. I had a myeologram done last month. That wasn't so bad. I was really nervous about the needle going in my spine. The part that was the worst was having a migraine that whole week before the proceedure and during and then afterwards. I couldn't take any of my migraine medicine for it 3 days prior and 2 days after the proceedure. Then after the proceedure, I had to remain lying down for 12 straight hours. I thought I was going to go bonkers! If I didn't have my iPhone, I would have drove my husband up the wall because I was so bored and with a horrible headache. I know, I know... poor me. haha! I survived.

I hope everyone is having a wonderful Summer so far. Please be sure to stay safe and drink plenty of water if you're out in the heat.

Wow, I've got lots to catch you up on. Wheww! It's been a crazy 2010. Hasn't it? My scoliosis has been messing with my back and right hip. So, I've been in for test for that. I didn't think that with a Harrington Rod along my spine that I'd have continued problems years later. But, alas, I think old age is catching up to me. Ok, so I'm not really "OLD." 40 1/2 isn't old, right? (agree with me here!) It's just that I'm feeling old. Ugh!

More updates coming Monday. I just wanted to let you know that I'm still alive and my health is stable. I hope that all of you are doing well. Happy Mother's Day to all you moms!

I just did an overnight pulse oximetry test where I wear a pulse oximeter while I sleep with my bipap machine and a reduced amount of oxygen. I normally use 5 l/min 24/7 but now the doctors want to try me on 3 l/min while sleeping. They say "Numbers don't lie." They are right about the oxygen saturation being at a lower oxygen flow, except for when I move around in bed and then it drops. I don't sleep as long or as deeply with just 3 l/min. What they are not noticing is that my CO2 goes up when I sleep. High CO2 is a big problem for me. I'm so frustrated with the doctors. They said their sleep lab isn't equiped to monitor CO2 all night. The whole reason for me to be on a bipap, originally starting in 1993, was because of my very high CO2 when I slept.

These are the things I run into with doctors and insurance companies. It's not easy being dependent on oxygen to live because of the hassle of getting it all approved. I dread it when a doctor wants to change something around like my bipap settings or my oxygen flow.

I'm still on Tracleer. My husband and I went to my doctor appointment in January. The doctor showed me a comparison of my heart caths, starting with the "Before Tracleer - baseline" and going through to the one I had last October. We were blown away by the improvements! The saturation of oxygen leaving my heart went from low 50s to 75%. The pressures look better too. I started taking Provigil, which is a anti-narcoleptic medication for the lack of motivation/drive I've been experiencing for the last year and a half. My husband and I both noticed a big difference. I am back to doing my chores and errands now. The insurance has only approved it for one year though. It's really expensive. If the insurance doesn't pay for its portion, I wouldn't be able to buy it. That sucks.

I hope everyone is having a great day!

This is something I've wanted to share with you for a long while.

My husband has a delivery type job. For privacy reasons, I don't want to discclose what that job is. But he had a position where he would ocassionally work different delivery routes by working others' routes at times. One day, when on someone else's route, he noticed that the person he delivered to was in a wheelchair and wore oxygen. So, he would go to his door for the delivery to make it easier for the man. The person who normally did his route, said this man was a little cracking and mean and didn't talk to him. So, the next time when my husband was able to deliver to the old man's house again, he took a few minutes to talk with him. It surprised him that my husband would do that him. My husband kept this up each time he would deliver to his house and explained that his wife, me, uses oxygen too. He told this old man about me and about my condition. The old man really turned out to not be mean afterall.

A few weeks later, when my husband finally was scheduled to deliver again on the old man's route, he went to his house and found out that he had passed away. I had NO idea that my husband was doing this when he delivered to the old guy. He came home that day from work and was sad. He told me about the guy and that he died. I was really proud of him, truly. I explained to him that he did something really good that no one else at his job took the time to do. And that was to reach out to someone who probably only wanted to feel a little bit more normal.

Personally, I think because my husband has experienced what it's like to live with someone who lives on oxygen, made it much more easier for him to approach the old man with openess.

You see, every little thing you do matters in life. Just because someone is disabled, doesn't mean they are less worthy of your kindness. Would my husband have done what he did if he didn't know me? I would like to hope he would. Did I make a difference in my husband's attitude towards people with needs? I hope so.

So, you see, everyone is here for a reason and what you do makes a difference in someone's life. So, let that difference be a positive one.

Well, this year the holidays were a little tricky. Thanksgiving was nice because the DME gave me a concentrator to use with my liquid oxygen to get me through the holiday without needing a refill for almost 2 weeks. Normally, I get my liquid refilled every week. But for Christmas and New Year, they wanted to just come a day early to refill my tanks. Now, that's fine if all goes well which it did for Christmas but come New Year's Eve, things didn't go as well with their scheduling. Not to mention that my usual driver quit just before Christmas. *sigh*

When it came Thursday night at 5 pm, I had this feeling that they weren't coming. I'm thankful that I have a 75lb tank of liquid oxygen in my van. I had my husband bring it in the house because both my 100lb tanks were so close to empty. I use oxygen 24/7. I can't be without it. I don't think Lincare realized I was so low when I talked to them on Wednesday. They said if they can't fill me on Thursday, they would just have the drivers work on the holidays to be able to finish everyone's refills.

Luckily, I have that extra tank and that it had plenty of "juice" in it and that Lincare came at 9am Friday morning. Other than that, I had a good time this year! =o)

I hope everyone's Thanksgiving, Christmas and New Year was wonderful and safe!

A Livingono2forlife blog subscriber and now a friend of mine brought this company to my attention through my Facebook account. The company found here: People in Chairs Transportation is going to open up for business in 2010 to those in wheelchairs. I hope you will take the time to check out their webpage as I have done. Wouldn't you want to be able to go on that vacation or visit family if you knew a company is going to assist you and charge you prices that are comparible to commercial airlines? I'm going to email them to ask a few questions about what altitude they fly at.

Cindy also told me about another site: http://www.homeoxygen.org This site is also informative about Airline Travel with Oxygen. It lists the requirement and regulations about flying with oxygen. What a pain, huh? =o)

Christmas is coming and you're going to have a guest in your house who uses oxygen. What, you ask, do I need to keep in mind to help the person feel more comfortable? Here are some tips:

1. In general, they don't like being fussed over but they do need help. When they get to your house, they will need help moving their oxygen in the place that best suites their needs. Hopefully, it will be a central location that will allow their canula to stretch the distance between kitchen, bathroom, & wherever the life of Christmas & family will be in your house. (assuming the person is using a long canula)
2. If they are using an electrical concentrator, make sure it's in a well ventilated area.
3. Do not have an open flame or fireplace within 5 feet of oxygen whether the oxygen is in use or not (especially liquid oxygen or e-cylinders).
4. Do not smoke inside or around the oxygen user. I know it may be cold outside but smoke really irritates the lungs.
5. For me, using a 50 foot canula at a guests house makes me feel like I'm constantly underfoot with the thing. So, your guest may too. Just watch your feet and try not to stand or trip over the thing. I always tell people that it's ok to walk on it briefly but just don't stand on it. It will cut off the oxygen. Then, I'd collapse and turn blue! haha!
6. Generally, when the oxygen user talks less, they are probably getting tired. Talking takes lung power and energy as does eating. Maybe a nice quiet place for the oxygen-using guest would be perfect for them to get a quick nap. Usually, 30 minutes to an hour is all it takes to re-energize.

These are some basic tips to go by. Remember, oxygen users want to have fun too. If you'd like to follow along with this blog, just subscribe and you will get an email each time I post a new entry here. I'd love to hear your comments. Do you have any tips to add? The subscription box is in the right column under the picture of my bipap. I need to put up the picture of my new bipap! Coming soon!

You can now find me on Facebook as: Christine Ohtwo. No that's not really my last name but it's really me there at Facebook. Send me a message if you have Facebook!

Here's how I arranged my oxygen for my roadtrip vacation:

First I had to calculate how much oxygen I would need for two weeks away from home. Using 5-liter/min takes a LOT of oxygen. So, I decided to take along a 5-liter/min oxygen concentrator, a 100lb AND a 75lb liquid oxygen reservoir, my bipap s/t, a bunch of extra canulas, plus a splitter for connecting the oxygen concentator & one liquid reservoir together.

Electrical oxygen concentators don't put out 100% oxygen like the liquid oxygen does. Being at higher altitudes that I'm use to, I was tired a lot. Thus, why I added a 1/2 to 1 liter of liquid oxygen with the 5-liters from the concentrator when we stopped at a destination.

Before leaving home to go on the vacation, I decided to switch my DME company to Lincare. They are a nationwide company who provide oxygen. Some Lincares service liquid oxygen and some don't. All I needed to do was provide a list of destinations that I felt I would need a refill for my liquid tanks. I chose Las Vegas & Monterey. The closest Lincare around Monterey, California was in Watsonville which was a 26-mile drive. That was okay with me! I arranged to go to the Lincares EARLY in the morning before their delivery trucks left to go on their routes. That's a 8am. So, I was there at 7:30am to get refilled. It works best that way whenever you don't know exactly what day you're going be there. Just call a day before you need your oxygen refilled to let them know you need a fill.

Before I left, I got my doctor's approval for driving around the mountains. I took a pulse oximeter with me. It was borrowed but I could have bought my own from eBay.

Yes it was a lot of work to arrange oxygen for my roadtrip and the 75lb tank was in and out of the van everytime I needed my portable tank filled. I was lucky to have two strong men with me. There are shorter reservoir tanks that are 50lbs and if you can get one, you MIGHT be able to fill your portable from the shorter one while it staying in the vehicle. Depends on what you are driving. We were in a Chevy Venture van

For my 40th birthday I went on an adventure of a lifetime. It was a long but fun-filled roadtrip. I did have some problems breathing and being more-than-usual tired. However, I did pretty well considering where we went. We left our house and traveled all the way to Tucson, AZ in one day and that went much better than I expected though I don't recommend driving 15 hours in one day to anyone! The second day is when my migraine hit with a vengence! But, we made it to the Hoover Dam and then on to Las Vegas that day. Believe me, I crashed hard that night. Vegas is awesome but I had to take it slowly because of the dust and elevation. Thankfully we brought along a wheelchair, which I am NOW a HUGE fan of!!! I went EVERYWHERE in that thing and was proud of it. Though, I still had my headache, I made the best of it. We went to see the Cirque Du Soleil: Beatles Love show on our last night in Las Vegas and it was SO worth it. I even had my first Limo ride!!! Wow!

After Vegas, we decided to skip Los Angeles because I looked as horrible as I felt. So, we drove about 12 hours to Pebble Beach, CA. Finally, some low altitude that made my head feel so much better but I was still really tired. I spent the first day just lounging around. Then off to Monterey Wharf where I had taste of Clam Chowder in a bread bowl. YUMMY! Who knew it was that good?? We made a day trip to San Francisco. Saw all the touristy places. I made my husband join me in every photobooth I found. He's such a good sport. Now we have a bunch of silly pictures of us!

All in all I did really well and Lincare really pulled through for us with all my liquid refills I needed along the way. Since they are a nationwide company, they have a lot of Lincares all over the country and they billed my insurance for the refill instead of me paying for the oxygen. That's the whole reason I switched my DME to Lincare from my previous supplier.

Let me say that I apologize for such a delay in posting a new update on this blog. Life has been very busy for me with a multitude of doctor appointments and a family funeral. Everything has settled down now so that I can post away as usual!

First let me say that Tracleer (I believe) has made an impact on my red & white blood cells, hematicrit, hemoglobin, iron and ferritin. All of them were low each time I had my monthly labs to check my liver which is REQUIRED. At first, the doctors thought that maybe I was bleeding somehow internally but I knew that wasn't the case and prooved that it wasn't by providing a stool sample. *gross* =o)

The only way that the doctors realized that my iron and ferritin was low was because my sister asked me to ask my doctors to do an iron study labwork. I was feeling so unmotivated to do anything and I'm not saying that it's vastly improved. But it's helped now that I'm taking iron supplements that I buy over-the-counter instead of getting the prescription kind. My doctor said the OTC iron would be fine to take. In just one months time, my iron & ferritin (which is the how the body stores its back up supply of iron) went right back to within normal range.

Unfortunately, I couldn't talk my doctor out of having another Heart Catherization in October. I had an A.B.G done last month and found my CO2 is 71.9 on 5L of O2. That was really depressing. Plus, it means that Vegas is out for my roadtrip but I'm still going and I'm so very excited!! So, I also had a Sleep Study to retitrate my bipap which is another story all together.. better saved for another posting. =o) Let me just say that I was not pleased at what they DIDN'T do during the study that I thought they should have.

I hope everyone is having a pleasant summer and staying out of the heat.