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.

I'm finally decided on the direction of my 40th birthday Roadtrip. We are going WEST! I just want to sink my feet into the sand again and I can do that in California. All I have to do is make it through the mountains.

I found a great website at: http://seamless.usgs.gov/website/seamless/viewer.htm 

This website lets me figure out the Altitude/Elevation of anywhere on my route on my roadtrip. So, using this cool online software, I've figured out that the highest elevation that I will encounter will be approximately 4300ft. The whole trip isn't at the altitude, thank goodness. I know I will have to clear this with my Pulmonologist first. I figure if I have problems breathing on the road, I can just use my BiPap machine and lie down while my husband drives.

Now, I have to figure out how to arrange oxygen refills while on the road. I'm thinking about switching my DME company to Lincare. They are nationwide and will cover my oxygen refills with my health insurance. At least, they've done so before in the past.

Gosh, I'm so excited. I just don't want anything to go wrong. Wish me luck on arranging all this stuff!

Do we go West or East? That is the biggest question. If we go West, we have to worry about the altitude that we'd be driving through. With my lungs and heart problems, the higher the altitude, the harder it is for me to breathe. So, we'd have to stay out of the mountains. If we go East, the altitude isn't so much of a problem, and I'd be able to see MY relatives or go to Washington, D.C. or many of the other historical places up the East coast. Though, I think we are leaning towards going West. Maybe we can bypass the mountains by going south of them? Anyone have a topagraphy map? *note to self: must find topagraphy map* =o)

So, going on a roadtrip with someone who has oxygen needs, such as mine, is going to be a big challenge. I will probably have to change to another Oxygen provider. The one I use is a regional provider where as a company like Lincare is nationwide. I've used them before and they've actually arranged ahead of time for me in the past to refill my liquid oxygen tanks while on the road. It was GREAT and they billed my health insurance. How great is that??

Next appointment is tomorrow. I'm not too stressed out about it. I get to have a CT Scan on my lungs and then off to the regular doctor appointment after a 6 minute walk. Yuck. Wish me luck!

I know this is an unusual topic for this blog but I'm really excited about it. When I was 17 yrs old, I made it my life-time goal to live to see 30 yrs old. When I made it, my whole family organized a huge birthday/family reunion party. It became my life line for when I was sick and needed something to motivate me or to keep looking forward to the future. Well, it worked and now I'm nearing my second life-time goal of 40yrs old which will be in September of 2009.

I've told my family that I want to go on a roadtrip which is getting harder to do with the way my health is now. However, I'm determined to make this road trip happen with my two sisters & husband. We may rent or borrow an RV and take off across the country. The only place I can't travel to are the mountainous areas due to the altitude which makes it extremely hard for me to breathe.

To say the least, I'm very excited. I told myself that I wouldn't start planning this event until my 39th birthday. Didn't want to get ahead of myself. Gosh, I'm going to be 40yrs old next year. With a little luck and a lot of God's blessings, I'll make it! =o) For someone who's doctors said I wouldn't make it to 2 weeks old, I think think I'm doing pretty well. Don't you? =o)

As for my doctor appointment in December, I'm going to have a CT Scan on my lungs to check for Fribrosis of the lung tissue because I take Cordarone (heart medication that helps keep my heart from skipping beats).

Once again, I go to my Pulmmonary Hypertension doctor appointment. It takes an hour to get there and waking up at 6am just to get ready to go is such a drag. But I went and I'm proud of myself for doing so. A couple of new things were talked about. The fact that my lungs do not have the volume to see what the doctors need to know for a specific thing requires me to now have a High Resolution CT Scan next month. The Pulmonary Function test isn't sensitive enough for my lack of lung volume. Yes, my lungs are that weak. I have what is called Restrictive Lung Disease mainly because of the Scoliosis that I was born with. Unfortunately, I couldn't talk my doctor into having a Right Side Heart Catherization ever year and a half instead of every year. Bummer! It's because I can't have an MRI that I have to have the Caths every year. I have metal in me that prevents me from getting an MRI.

My husband asked the doctor a new, very interesting question concerning Stem Cells. Is Stem Cell transplants/injections being done on patients like me to help repair the lung tissue scarring and could it be something that I'd benefit from? The doctor said that this is something that is being researched and a few patients are being tested for it in Canada. After a week of being injected with stem cells, the patients are showing signs of improvement. However, the doctors are still unsure if these improvements are permanent or will the patients require continuous injections to maintain these improvements? My doctor said the research is about 10 yrs away from making serious breakthroughs. Yes, that's discouraging to hear. Can I hang on for another 10 yrs? I don't know but stranger things have been known to happen. Right? So, I won't give up hope.

The only other thing I'm worried about is my liver. Over the course of 6 to 12 months, my abdomen has become distended or bloated. I asked the doctor today about it and he said that it could be that my liver has become enlarged. How does a liver become enlarged? I don't drink alcohol. This is something that I need to research. What can I do to help my liver? I will have to get back to you on that one! =o)

Post your questions on my messageboard if you'd like!

I know I should be use to going to the doctors by now but I never look forward to going. My husband says that within a few days of my appointment, I start to get all stressed out about going. I get fussy & irritable. Then on the day of the appointment, I truly do NOT want to go. I've had a lot of doctor appointment where all the news I got was bad news or something else was wrong with me. Perhaps this is the reason why I dread going now.

I have an appointment tomorrow and I'm struggling to feel optomistic even though I feel a migraine come on.

Does anyone else dread going to the doctor's? How do you deal with the stress?

I did go get my labwork done on the 4th of September. Just one day later than what I said I was going to do. I celebrated my birthday and anniversary last week. We went to Arkansas to dig for diamonds! No, I didn't find a diamond but I found 2 Jasper stones! It was fun but a bunch of hard work. 

It's new! It's fabulous! But, there's not much there yet. It's the new LivingOnO2forLife messageboard. I've found that with this blog, it's hard for those who post questions / comments to find my replies. With the messageboard, I'm encouraging you to post your questions and helpful experiences there.

http://pub34.bravenet.com/forum/2855880451/

The whole purpose of the LivingOnO2forLife Blog is to help others who are in a similar situation as myself. When I first learned I had to be on Oxygen 24/7, I was in denial at first and then I got mad at life. Of course, then I was overwhelmed and confused about how I was going to live a good life while attached to a 50ft canula. It took me some time to figure out how Durable Medical Companies work and how to get what I need... not just what they wanted to give me to use. It all starts with your doctors (Pulmonologist & Primary Care Physician). Communication with the pulmonary doctor is the key. You have to take an active role in your health care. Your pulmonologist prescribes the oxygen or bipap for you. If you are having trouble with adapting to it, tell the doctor. Don't just stop using it and give up.

Remember, this is YOUR life and YOU have a say in YOUR health care. But that doesn't mean giving up when things are tough. Hang in there and talk to the Pulmonologist and then relay all that information back to your Primary Care Physician.

This is my opinion. It's how I lead my life.

Well, here we go again. In order for me to continue to take Tracleer--that monsterously expensive medication ($4k a month), I have to have a blood test every month. These tests are very important because they show whether or not my liver has been affected by the Tracleer. So far, it hasn't! Although, it does lower my red blood cell count. It's still within acceptable range. I'm sure the doctor would like for me to take a vitamin with iron in it but iron does not agree with me.

I'm gearing up for 3 doctors' appointments this month. I'm so excited. Not really. =o) Tomorrow is when I plan to have my blood test and to reward myself for doing so, I'm going to the craft store! Now that's exciting news.

I've noticed that I've put on a couple of pounds of weight. So, I'm going to try hard to make myself more motivated. I've really lagged on getting things done. I'm telling ya'll, my readers, that I'm going to do better! Are you with me??? =o)

If you have questions, post it as a comment. It won't immediately appear once you post it. I have the comments set for me to approve them first before they are posted. Sorry about that. I'm trying to battle the spammers. Your questions are important. Remember, I'm not a doctor but I am an oxygen patient who happens to have scoliosis & heart problems. =o)

Take care!

Christine

Well, I had another RHC on June 27, 2008. Let me tell you that it was NOT exciting to say the least. I nearly passed out during the numbing up part. My heart cath is done in the groin area because I have scoliosis and the doctor have always been concerned about whether or not the vein in my neck would be a straight shot to my heart. This last heart cath, while they numbed me up, they hit a nerve and that's why I nearly passed out. Now, I'm not faint of heart. I can take a lot of pain but this was really weird. I had to tell the doctor that something wasn't right and that it felt like all the blood was rushing out of my head. I couldn't breathe well and it scared the bejesus out of my. But, I survived. =o) I'm proud of myself.

The results were ok. My pressure in the Pulmonary Artery was just on point above last years which the doctor said it was ok and stable. They tried to do an Artial Blood Gas at the groin but with the fiasco of the nerve, the doctor didn't wan't to try for the artery. So, she took blood from the cath. Of course, the readings were off for the CO2 by about + or - 5. The results were bad but we expected them to be. The CO2 for veinous blood was about 70. But hey, my heart is doing well!!! =o)

First I would like to thank all the many visitors to my blog.  I appreciate the interest you have about Respiratory Insufficiency, Pulmonary Hypertension, Cardiac problems & Scoliosis -- all of which I try to cover in this blog.

My last appointment, on April 18th, went well. The staff asked if I would take part in a study. Researchers would study whether or not Pulmonary Hypertension is a genetic disease. I participated but I told them up front that I've already had a genetics test in the past to rule that out and it came out negative. My parents were worried that my little sister would have babies who would turn out which children with my disabilities. Of course, we were all relieved.

I'm still having the problem with the lack of motivation. I still don't know why or whether or not it's a mysterious side affect of Tracleer. I have to push myself everyday to get my butt in gear to do the basic things... even taking a shower and washing dishes. It is so frustrating. I tried the medication Cymbalta but I don't take extend release medication very well and it made my brain feel like extremely wired all day long. That's just from taking only one pill. I think I'm done taking antidepressants.

June 27th is the date of my next Heart Cath. Let me tell you that I'm so totally thrilled. (that was sarcasm). I'll try to keep you updated a bit better than I have been lately.

Hello! It's getting closer to the time where I will need another Heart Cath. I can tell you that I'm not really excited to go through that again. I think this time, I will not take the Xanax before the proceedure to "help" relax me because one pill doesn't do me any help. So, I'll brave it on my own. =o) I'm hoping they won't hit a nerve when they inject whatever it is to numb the area of my groin. The nerve doesn't feel the affect as they are doing it but afterwards is a totally different story.

I'm stil getting my labs checked every month. My bloodwork looks good which surprises me. My liver is working well. YEA! What bothers me is that as I keep taking this medicine, I've become more and more unmotivated to do anything at all. I force myself to get out of bed and do my daily chores. I'd be interested to know if anyone, who takes Tracleer, is experiencing this as well. I'm discouraged. It "seems" like I'm depressed but I don't "feel" depressed. Can Tracleer cause that feeling?

My other question is: Can people who have Sternum wire (from open-heart surgery) have CPR performed on them? What happens to the wire? If anyone knows, post here. ok? =o) My next appointment is 4/18/08 and I think we are going to get my a wheelchair. Hopefully with a wheelchair, I won't stress myself out too much and get sick on the way home with a migraine yet again. Wish me luck!!!

I'm Still Alive

And I'm truly proud of myself. I am sorry that I haven't kept everyone updated with this blog in a while. It's just that with the last few doctor appointments to the Pulmonary Hypertension Clinic, I've been getting sick with a migraine while there. I end up throwing up in the car all the way home. It's the stress of going that's reaking havoc on my body. The doctor schedules either an ECG, 6-minute walk and then comes the doctor appointment after that. Each test requires a long walk down the halls of the hospital to get to the testing area. It's come to a point where my husband and I have decided to use a hospital wheelchair while there. It sucks. I tended to tell myself that I needed the excersize of the walking but since I keep getting sick, I have to re-evaluate my way of thinking. Pride has no place when it comes to doing my body damage. I can take a few dents in my pride where health precautionary is concerned.

Lately, I've been getting behind on my medical records and account statements. What a pain in the butt that is. Every since Medicare has changed their billing system, life seems a bit screwy. So, I'm thinking about looking around for a personal program for organizing medical records. I'd like to save it all on a thumb drive and then add that drive to my key chain or something of that nature. I could even add an Advance Directive as its own separate folder on the drive. What hospital doesn't have a USB port to plug that thing in and look over my records if I have no way of speaking with them or if I can't recall something? I'm wondering if there are any privacy issues involved. Anyone know? Contact me.

As for the Tracleer... I'll be having another Heart Catherization sometime this Spring (May 2008, I think). At that time, it will be determined how good of a job Tracleer is still doing. Will I have to go on additional medication? I sure hope NOT!

I look often in the Referral section of my blog to see what questions people are searching for and who end up visiting my blog. I often get some really interesting questions from this that I would like to post answers to for those who search for them.

One of the questions is:

Question: Can people on portable oxygen go into casinos?

Answer: I have actually been in some of the Shreveport, La. casinos and two Oklahoma casinos without problems accessing them with my oxygen. One thing you need to be aware of is that there is smoking within the buildings and people who smoke and gamble tend to not care whether or not you have oxygen with you. So, you need to be careful how close they get to your oxygen with that lit cigarette. My advise is if you choose to go, go knowing how much cigarette smoke your lungs can handle. When you've reached the point where you're feeling tired, leave the building and get some extra rest. Do NOT push yourself. It will only set you back healthwise.

This is NOT recommended for all oxygen patient. Ask your doctor before you go. Cigarette smoke is bad for everyone but especially for those who already have respiratory problems.

More Q&A's to follow.

What has a year of taking Tracleer done for me? I underwent a heart catherization on May 21, 2007 to find out just that. I was nervous again and took a zanax one hour before the procedure. Not that it really helped calm me any. It was only .25 mgs. This time there was no accidental bleeding afterwards. They had to apply a lot of pressure when they pulled out the catheter. The catheter was injected in a vein at the groin and passed up into the right side of my heart. Don't worry. The only pain involved was when the doctor numbed the groin area with lidocaine. The doctor did it slowly this time. Wheww.. So, it wasn't as bad as the last time.

The bad part was that I had to do this heart cath while having a migraine. I was a total trooper! The results of my heart cath were so good that my doctor was all smiles while telling that it's a cause for celebration. Why? Because I've now reduced my high risk for heart failure. It's at a moderate risk now. My heart while taking Tracleer can work a bit more efficiently.

Though, I still get tired and shortness of breath with exertion. That part doesn't change. I do have more endurance for the activity that I am able to do. I can walk a little further before getting too tired to where I have to stop and rest. I can change the bedsheets without stopping in between the flat and fitted sheets. Now that's improvement. =o)