The evil that I know… Tracleer!

Living On Oxygen for Life

I bet you were wondering what happened to me? Well, you know I had that doctor appointment with the Pulmonary Hypertension doctor, right? That was on September 5th. I wrote the September 5th blog post before I went to see the doctor. Did you know that the pediatric dosage weight limit for Tracleer is at 40kg? My doctor didn’t even see a pediatric dosing weight for Opsumit. You’re probably wondering why I’m telling you this, right? Well, it’s because I only weigh 98lbs which converted to Kilograms turns out to be nearly 45kg. So I’m pretty close to 40kg.

The whole time I’ve been on Tracleer, K and I have told my PH doctor that during the first month of taking Tracleer, I did and felt really great. Tracleer is started on half dose… IE: 62.5mg twice a day for a month. After the first month, the dosage goes up to 125mg twice a day. When I went up to full dose and after a few months, I started to feel bad. I lost endurance and my shortness of breath became worse over time. I even lost interest in a lot of things. Opsumit was much worse for me and I ended up in the hospital (August 5th of this year). I know, it’s crazy! Why aren’t the doctors listening to me and K?

Finally, during and after the hospital stay in August, K and I were at our limits with the whole PH medication thing. I actually told the hospital PH doctor (the partner to my doctor) that… “With me and the way my body reacts to certain medications, you have to start thinking outside the box to treat me.” I told her, “I want to be a part of the decision making for the treatment care to my body.” Not that I felt that I wasn’t on the team but I just wanted to remind them that I’m not stupid or gullible or even a non-active participant in this whole hospital situation. Shoot, I was on a roll! I told her that I wanted off of Opsumit and back on Tracleer. Heck, it was the evil that I knew.

So, at the doctor appointment on September 5th, we saw my PH doctor. K and I laid it all out there about how very frustrated we were. I think we finally got her to see the light. I do not have primary pulmonary hypertension. My pulmonary hypertension is something that I was born with and is due to malformation of my ribs that decrease my lung volume and due to the heart problems that I was also born with. They tried a lot of PH medication to treat the Pulmonary Hypertension and Tracleer does bring my PH pressures down but it costs me my breathing ability and the quality of life I would like to have. I didn’t start having my Pulmonary Hypertension treated until year 2006.

I bet you’re thinking: Now what? Right? Well don’t fret, y’all! We got a plan. It’s pretty shady but I finally got the doctor to agree to let me try it. The doctor, K and I all agreed that I could either come off of PH medicines all together or take Tracleer at half dose for the next 3 months and then do a heart cath in December. The way I see it is that however much the medicine brings down the pressure, if it’s bringing it down, it’s still considered HELPING whether at full or half dose. Of course, it could just not work at all like the PH doctors think will happen because according to all the clinical trials, Tracleer doesn’t work at half dose. I wonder how many lightweight people they did the Tracleer clinical trial on. I can’t even take long-acting type of medicine for this reason.

I’m thankful I still have a whole bottle of Tracleer leftover from switching to Opsumit. That way the doctor doesn’t have to do the paperwork yet for Tracleer full dose.. just for the half dose. It’s a little complicated. Technically, I’m not suppose to break the 125mg pill in half myself. The doctor said it shouldn’t be done. K and I looked at each other in the office and rolled our eyes. I’m breaking my own darn pills! Why get MORE Tracleer when I have pills I can break in half?

I hope everyone had a wonderful Summer! You know what season it is, right? It’s FLU SHOT season! Get yours this month! I’m getting mine early next month at my doctor appointment for my annual physical. I’m still battling to get my thyroid under control but I have hope that since I’m back on Tracleer…all will be well again!

Stay well! FOLLOW my blog!!! Lots of love to you all!

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8 thoughts on “The evil that I know… Tracleer!

  1. So awesome to see you being your own best advocate in your health care – Doctors can’t possibly know what our illnesses are like or how the drugs make us feel ….. they only know what they have learned thru books and other people’s experiences. I like drs that appreciate my being informed and knowledgeable — I often get complimented on my knowledge of my ailments/drugs I have. I hope this works out for you! And it’s also so wonderful your husband is involved and understands all this so in case you are not able to speak for yourself, he’s up-to-date on everything! You make a great team – you are a wonderful example – Thanks for sharing – you give people confidence to do the same.

    • You’re welcome Susan! K is getting pretty good at asking questions when he needs answers about me from the doctor. You know, sometimes he needs to hear it from the doctor. 😉 haha!

      You are right though. You are your best advocate where your health is concerned. If you (anyone) has concerns, always ask about them with your doctor. There is no such thing as a stupid question. Right, Susan? 😉

  2. Another personable yet informational post! I love reading your blog and hope everything works out. When I was growing up (either in school or at the doctors) my mom would often say, “I’m your best avocate!” which was true. But I agree that no one else actually knows what it FEELS like and therefore needs your input. LOL> as a kid, whenever I’d go in for any kind of shot/blood-taking (as I’d had it done hundreds of times), I’d question the (M)nurse before letting them stick me. Have you done this before? How many times? I have 2 rules: Don’t miss the vein….and…DON’T STAB the needle! If they succeeded, I’d give them a lolly-pop. 🙂

    The beauty of it all, is the fact that these “hardships” actually push us to become more introspective, aware and confident. It’s ironic that many people who have a seemingly perfect life may face stuggle but, not having been forced to overcome hardships, don’t have the facilities to find balance.

    I’m encouraged by your strength and honesty. Your openess and the fact that I’m not “the only one” inspires me. I’m also inspired by your writing.

    – BTL

  3. i often have the same problem Christine. Because of my severe scoli im only 4’7 but I should be 5’8. A dr once told me that getting meds to act according to blood volume and not weight/height is a constant balancing act. He explained it such: A man on diabetic and epilepsy meds has a double amputation of his lower limbs. The following day all his meds are out of whack, he has fits for the first time in years. His meds have to be almost halved. This is because he has lost blood voIume and weight, even though his brain perceives he is the same height!
    I was told i needed to take 300mgs Pregabalin twice daily, before it would control my neuro pain. but it was controlled at half that amount. the doctor supervising me accused me of being a hyperchondriac, nd that i was having a psychosomatic reaction!
    You are the only one who really knwos what is going on inside, what is right for you and your lifestyle. Never let them railroad you! You go girl!

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