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 with 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)

I've been receiving search hits covering numerous topics. I am looking forward to covering the issues with people who view my blog. I hope that anyone who has any questions or suggestions for topics to discuss, will post their request a comment here. Below is a list of some future topics that I would like to cover.

1. Blood Thinners
2. Cost of Tracleer: how I afford it and maybe you too.
3. ABG's: what it is, how it's done and what the results tell you.
4. Scoliosis: what it does to the body.
5. Oxygen at night: why do some people need it more at night.
6. Longevity on Oxygen: is it a crap shoot?

Most of these answers and discussions will be related to my experiences but feel free to add your experiences to better help others who visit this blog.

Since I've been on Tracleer for nearly a year (July 2006) and I can not have an MRI due to the metal in my body (Harrington Rod & Sternum wires), I have to have a Heart Catherization. The doctors want to get an idea of whether or not the pressures within my heart has gone down from using Tracleer. I think they have but what do I know? I'm just the patient, right?

I have often told my mother that I wished that she could take Tracleer because for some reason, the medication seems to reduce the symptons of my migraines. I don't know if it is just a fluke or if it something that really is a benefit from Tracleer. It's never been for Migraine use. The cost of Tracleer for the 125mg, twice a day dose is about $3700 a month. That's one expensive medication. But for someone who can not have a heart or lung transplant, this is one of the only thing left for me to try.

My next heart cath is May 21. I'm still a little nervous about it. I think my older sister will be coming down again to be with me. I'm not looking forward to the week after when I will be recovering. I definitely wears me out physically.

My last doctor appointment I had to do a 6-minute walk test. I did pretty poorly on it. I knew it was going to be bad because it was fixing to rain and so it was pretty darn humid outside. In the building where I did my walk, it felt like they didn't have the a/c on because it was cool outside. They couldn't understand why I was doing so poorly when all the other times I did pretty well. People who don't use oxygen or have breathing problems just don't understand the concept of the weather playing a huge role on our breathing ability.

Ok here we go again. My next Hypertension appointment is coming up at the end of this month. The doctor told me during the last appointment (about 3 months ago) that I will have to have another Heart Catherization because I can't have an MRI. I have metal in my body that makes it impossible for me to have an MRI. Lucky me. I don't know what it is about this next heart cath. I seem to be nervous about it. I'm already fretting over it. I told my husband and he said stop worrying about it. "Just ask for more Xanax," he said. Last time the doctor prescribed only ONE pill of xanax. HA! Lot of good that does because I was so freaked out about when to take it. I mean, if I took it too early, it would wear out before the preceedure. They aren't exactually punctual on when they start these things. Trust me. I've been through enough of these and major surgeries to know this about hospitals and doctors.

I think this time with the Heart Cath... I'd like to have someone to stay at our house to help take care of me and keep my husband company. I didn't bounce back as quickly or as well as I thought I would the first time. I think a couple of days will be good. The first couple of days, I had chest pain and my heart was skipping a lot. I was tired a lot the first couple of days and the fact that I had to ly flat for the first two days to prevent bleeding from the vein they used drove me nuts.

But now that I have my new laptop, I may just tinker around with it while resting in bed.

What do you do when you live on oxygen as I do and have 2 cats? One of said cats likes to chew on canulas. I'll wake up in the morning and check my canula and there will be little tiny kitty teeth puncture holes in the location of my canula where it's run under my bedroom door. Since I close the door at night, my cat, Mary, hates being left out. So, I assume this is biting is her payback to me. What do I do about it?

I have to go into the kitchen where I keep my packing tape. No No... I don't intend to package up my kitty and send her away. I do, however cut strips of tape to wrap around the canula where the holes are. That seems to help. I often have to ask for another 50 ft. canula from the Oxygen Refill guy.

Got bad news from the insurance today. I've been fighting with them about Nexium. Since I started the Tracleer, I've been having problems with my stomache and my doctor put me on Nexium, which it helped. Now, three months later, the insurance says the Nexium has to be reauthorized to continue using it. Well, after playing phone tag with the doctor, insurance company and faxing this and that, Nexium was denied. I am so mad. Now what do I do? I could appeal but it was so hard just to get my doctor to do this much. Geez.. I'm getting frustrated. Maybe I should try that Prosilec (over the counter stuff).

Any advice??

Something exciting is happening. It appears that the longer I take the Tracleer, the better the benefit. A few times I have been out to lunch with my husband, I have been able to set my oxygen flow to 3 liters/min. Remember, my normal rate is 5 l/m. Reducing your oxygen isn't something that I'd recommend to anyone but I wanted to know how I would do on 3 liters/min. Normally if I wanted to turn it down it would be down to 4 l/m.

Since I was sitting down the whole time without being really active except to eat and occasionally talking to someone, I did really well for about an hour & a half. After that, I started to get tired and had to turn up my oxygen.

So, maybe this medicine really is working afterall.

My December 29th doctor appointment went well. I actually walked further on my 6 minute walk than the last time. My husband and I discussed this with the doctor and we told him that we were concerned that it didn't really show the true evaluation of how I'm doing. It doesn't account for how I "feel" while doing the test. My heart was skipping and I had mild chest pain while doing the walk test. They only had my oxygen on 1liter and wouldn't turn it up. What's up with that??? So, the doctor said that I can do the test on 3 liters. YEA!

On January 11th, 2007 I went for a Swallow test because sometimes when I swallow (mostly water) it goes down the wrong hole. I end up coughing and choking. Now it's not all the time but it is a bit bothersome. Well, I ended up doing this swallow test because the doctor was concerned about aspirating and pneumonia.

I have to tell you that the Barium experience with the swallow test was at best massively disgusting. Unfortunately, it did NOT agree with my stomache. After the swallow test, I had to go for an Echocardiogram. When I was finally done with that, my husband looked at me and said that I looked like I was going to cry. I told him that I felt like I was going to throw up.

And, on the way home, I did. I threw up all the way home and at home and I couldn't eat or drink even water for almost 24 hours. So, Never again!!! No more barium. =o( It did show that I have acid reflux though.

It's getting closer to Christmas and the family on my husband's side will be getting together again this year. I've known them for 18 years. So, nothing is new for me. They all are pretty comfortable being around my oxygen now. They've learned that if they want to smoke while I'm over at their house, they have to go outside. They have always been completely nice about my needs. When I first came into the family, I didn't have to use oxygen 24/7 like I do now; just at night when I slept. Now that I have to use more oxygen, I need to bring more oxygen with me for the family times such as Christmas or Thanksgiving. I'll have my husband and one of his brothers bring in the 75 lb liquid oxygen reservoir into the house where we are at so that I wouldn't have to refill my portable numerous times throughout the evening. It all depends on how long we intend to stay. If it's more than 3 hours, I have them bring in my oxygen.

The only thing the family has to remember is to watch where they are going so they won't trip over my 50 foot canula. Believe it or not, I can not control where that thing lies on the floor. My husband and I are totally use to having the canula anywhere on the floor. However, the rest of the family or even friends are not. As long as they don't stand on it and cut my oxygen supply off, I'm ok! I just don't want people tripping because of my canula.

In other news, my next doctor appointment is December 29th. What a day that will be. I may be driving up to Oklahoma right after the appointment to be with MY family. I hope everything works out so that I can go. Wish me luck!

To those who have found my journal through the website Scoliosis & The Milwaukee Brace, thank you for taking interest in my journal. I'm not sure how I got to be on their site as one of their links but I appreciate any notice of my journal. Not to single out a particular group of people, I appreciate any benign visitor!

In the past I've told you about my scoliosis and how it plays a large role in how my body functions. Just by having scoliosis, it effects how I do some things in my daily life. It's hard to tell whether or not I am holding my head up straight. I prefer sitting propped up on my right elbow on the couch because it is very difficult to do so on my left elbow. My scoliosis curve is in the upper thorasic vertabraes and the curve is on the right side of my back. This curve shifted my rib cage and deformed many of my individual ribs. Because they are deformed, I have breathing problems. With age, the ribs and muscles stiffen and the body gets less oxygen. With less oxygen and more energy needed to breathe harder, the heart weakens. With the heart weakening and the lungs can't keep up, pulmonary hypertension plays a heavy role now for me.

So, would I still have had all these problems with breathing and heart complications if I didn't have scoliosis? Maybe not but I still probably would have been born with the 2 holes in my heart (ASD & VSD).

Makes me wonder about what causes Scoliosis?

Ok, no one knows why I'm having acid reflux for sure. I'm telling you that it was a real problem for me. I have one true weakness and that is that I can't handle being nauseated. I can handle all sorts of pain or discomfort but when it comes to nauseation, I'm toast! So, when the doctor finally prescribed Nexium, I latched onto it like it was a winning lottery ticket!

To tell you the truth, I think it might be the Tracleer that's giving me the problem. Since I have the Nexium, which is expensive, I'm still giving Tracleer a try. I've been on Tracleer since July 2006 and so far, I've noticed some difference! As weird as this may seem, I now can walk and talk at the same time. Though, not for a long time because I still get a bit tired if I walk and talk a lot. But, it is surprising to have that ability back.

There is suppose to be a new drug coming out soon. It's a bit better than Tracleer with not so harsh Liver problems. FDA may be approving it within the next couple of months. I don't know the name of it but I'm going to ask when I go to the doctor's in December. That's all I know about it. Sorry ya'll!

Life for the past couple of days have been a bit rough. My husband and I went to Best Buy two days ago to get a couple of games for his xbox360 and on the way home he thought he heard something knocking around under my van. The next day, I went to the post office to mail a couple of soldiers some care packages and afterwards I get in my car to leave and the darn thing wouldn't start. So, I tried to call my husband on his cellphone but I kept getting transferred immediately to his voicemail because I had turned his phone off on Sunday to charge it because it was almost dead. Well, my husband was running late because he didn't hear the alarm clock that morning and didn't notice that his cellphone was still turned off. He just stuck the phone in his work bag and left for work. Here I am... stuck at the post office with no ride home. So, I called my husband's parents and they were nice enough to come get me and take me home.

That evening, my husband's parents came back to the post office to help us jump my van to get it home. Finally the van was home. The next morning, I was getting ready to leave to get my flu shot from my doctor and the van wouldn't start again! ARGH! I had to call the towing company because my husband's car battery isn't good enough to jump my van to get it to the maintenance shop.

As I was waiting for the tow truck (who said they could jump the battery), I had the O2 dude suppose to refill my tanks today (Wednesday) and bring me an extra portable liquid oxygen tank so that my husband and I can go to the Blue Man Group concert on Saturday (October 14th). I couldn't miss the O2 dude because I needed oxygen and that extra portable. ARGH!! Luckily, the O2 dude showed up first and did his thing and left. The tow truck finally showed up and jumped the van and left. 

My husband was following my van to take it in when I noticed a glowing BRAKE, ((ABS)), and TCS light on my dash! Where does it end?? We ended up taking it to Firestone down the street instead of all the way to the next town where my GoodYear maintenance place I usually go is at. It turned out to be just a battery problem. THANK YOU JESUS!!!

So, that's what my last couple of days have been like. The moral of this story is to ALWAYS have a backup supply of oxygen with you. You never know when things like a dead battery and a possibility of no ride home will sneak up on you.

As funny as it might sound, I actually do this. It's not done on a regular basis but it is fun and a good way for me to measure the volume of my lungs. When I sing, I sing along with the radio. Nothing fancy.. I sing in the vehicle as I'm driving down the highway just like most other people do. Ok some people talk on the cellphone. But for me, talking on the cellphone and driving isn't the safest thing for me to do. I need to concentrate on driving. Since I have a breathing problem, I don't need to complicate my driving by concentrating on some conversation while operating a vehicle.

When I sing along with the radio, I count how many times the artist actually takes a breath how many times I need to while singing the same line of the song. If I'm any worse or better than when I previously sang this song, then I know how well or how bad I'm doing lung volume-wise. I hope this makes sense. Granted, I'm not testing myself on a Mariah Carey song or even Barbra Streisand. That would be NUTS! They have a set of lungs uncomparible to most others. Oh yeah, even Whitney Houston too!

What I'm saying is, there are many ways you can keep track of how well your lungs are keeping in shape. It's good excersize. Also, I know that when I "DON'T" feel like singing, I'm having a bad breathing day. Today is one of those days. It's raining and humid outside. Two of the worst offenders.