Staying busy…


Living On Oxygen for Life

This year I have been staying busy. I found a way to do volunteer work while staying at home. Since I am on oxygen 24/7, it’s wonderful that I could actually find something that I can do. I crochet hats and afghans for a local children’s hospital. The picture above is the start of my 5th afghan that I plan to donate when it’s finished. I taught myself how to crochet years ago and it’s something I do that is so relaxing. I just love it!

I’ve always wanted to volunteer. During one time in the hospital when I was a child, I received a little pillow made by volunteers from a ladies’ church group. I still have the pillow. I think I was 13 years old when I got it. I’m now 43 years old. So, the pillow is pretty old! It’s been through a LOT with me. How could I ever get rid of it? Right?

I love giving and to give a child something that I’ve made just for them makes me so happy.

T minus 30 minutes…

Living on Oxygen for Life

T minus 30 minutes to go until I leave for my Pulmonary Hypertension doctor appointment. I feel queasy and stressed about going. I hope the doctor doesn’t want me to do a bunch of tests: 6-minute walk (Yuck!), Echocardiogram, or a CT scan of my lungs. It’s been a year, I think, since these have been done.

I keep reminding myself of my super awesome reward. Though, my husband said it will just be that “I’m” taking him to lunch. I’m like…. “Okaaaaay….”. Don’t forget to imagine me smiling saying that while rolling my eyes. =o)

I’ll post updates! Have a great weekend everyone! Be sure to follow my blog.

Thank You!

Thank you Chris Kyle for serving our great nation! You were not just the most deadliest sniper but a father, a husband, and a friend to many. Your memory and good deeds will live on forever. May you rest in peace.

I wanted to start this post on my blog with the above words I wrote. I truly appreciate all those who serve this great nation of the United States and give up of themselves the time and sacrifice to ensure our way of life. Freedom is never free. It has been paid for by the strength and fortitude of good men and women who defend our nation on a daily basis. I offer my thanks to all those who serve in the military and those who are dedicated to standing watch throughout the night to protect all of us from harms way. God bless you.

Tracleer Update

Living On Oxygen for Life

Before the doctor would even put me on Tracleer, I had to do a lot of medical tests. I went to see doctors who specialize in Pulmonary Hypertension. To go to this appointment, my husband and I woke up at 7:30am to get there at 10am and we didn’t get home until 6pm that evening. It was a really long and tiring day.

My checklists of the tests I had to do are:

  1. Blood work including tests for HIV and Liver function
  2. Artial Blood Gas
  3. Complete Pulmonary Functions testing
  4. Chest CT scan
  5. EKG
  6. Echocardiogram
  7. Overnight Oxygen Saturation monitoring
  8. Right-side Heart Catherization

I think that about covers it all. They wanted all this done within the next two weeks of that doctor appointment. I was so nervous about the heart catherization. Though I’ve had them before but never while awake and as an adult.

For me to receive Tracleer, the doctors filled out a request form of some sort and submitted it to my insurance to see if they would pay for it. Remember it costs between $2000 to $5000 a month for this medication. Had the insurance not paid for the Tracleer, then the doctors would help to find programs who offer assistance, some based on how much of an income you have, to decide on how much help you may receive. First, I would have had to go through the assistance program from the pharmaceutical company who manufactures Tracleer. If, for financial reasons, I did not qualify, there was the next step to take: Caring Voice Coalition empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support.

Luckily for me, my husband’s insurance decided to pay for it. Before I had even completed all the above tests, I had my first bottle of Tracleer already. I was so surprised that everything was going so fast. I didn’t even open the package of the Tracleer because I hadn’t even finished with my tests first. The doctor said that we would talk about taking the Tracleer after the test results come in.

I have been on Tracleer since 2006. I have had to go in MONTHLY for a blood test to check on my liver at a local lab. Over the years of taking Tracleer, I haven’t had any liver problems but I feel that I’m not breathing better either. The reason why I continue to use it is because when I have my annual heart catherizations, the medicine is proving that it brings down the pressures within my heart and lungs which is a good thing. I just wish I could get the “More Energy” benefit that most others seem to get from taking Tracleer. I guess I can’t have it all, huh?