Living On Oxygen for Life
Many of you want to know the results of the Right Side Heart Cath that I had on December 1, 2014. I always schedule the heart cath with the same doctor. I trust her and she has performed all but one of them here in Texas. I say “in Texas” because I’ve had numerous other heart caths as a child (all right side heart caths) in the great state of Indiana where I was born. Though, those childhood heart caths were performed while under anesthesia. Now, my heart and lungs do not tolerate sedation. As an adult, I have all my heart caths without taking any kind of medication. Plus, I don’t have an IV. I know… brave.. aren’t I? *wink* At first, I was a little scare because I’d never had one without being asleep. But now, it’s something I’ve grown use to, except the numbing of the neck part. I will not lie to you…that freaking hurts. I hope I’m not scaring anyone.
This year was a very important heart cath. I was out to prove something to the doctor… or at least I was hoping to prove my hypothesis..? theory? Whatever the word is.. I was out to prove my point. Since 2006, I have been taking Tracleer, though, throughout the years until now, I’ve tried numerous other PH medicines. I’ve tried Revatio (Viagra), Adcirca (Cialis), Letairis, Tyvaso, Opsumit and even Flolan during my first heart cath. The only PH medicine that my body can tolerate to a degree is Tracleer. I say to a degree because I do well on a half dose (62.5mg twice a day) but when I up the dose to the full adult therapeutic 125mg, I start having problems.
I have been taking Tracleer for the past 8 years. Over those years, I’ve come to know how my body performs while on this medicine. K and I both repeatedly told my doctor that when I took the half dose of Tracleer, I did well. But when I took the full dose, my breathing started having problems with more shortness of breath, lack of motivation, and tightness of my chest when I exerted myself. I got frustrated with the doctor and then I got mad. So, I switched to Opsumit, the newest PH medicine available. That turned into a fiasco. So, back on Tracleer I went but the doctor finally started to really listen to what I was saying. She looked up the weight cutoff for a pediatric dose and found I was very close to the 40 kilograms. All this time over the past 8 years my doctor told me that the clinical trials shows that Tracleer only works for adults on a full 125mg dose. But in the doctor’s office, in August 2014, we came to a meeting of the minds decision that I was going to try Tracleer at the pediatric dose of 62.5mg twice a day for the next 3 months. At that time, I will agree to have a heart cath to see if the lower dose will work for me since I’m only 100lbs.
On December 1, 2014 I finally had the heart cath. I wasn’t very excited and I sure was nervous. I really wanted the half dose of Tracleer to work. I wanted to be right because if I wasn’t, I’d be going back to full dose. After all, the full dose lowered my pressures. It helped my heart but hurt my breathing. Grr… It seems like I can never win! The doctor comes into my room to talk about the paperwork and to mention she will have a Resident working with her but she reassured me that if he has trouble then she’ll step in. I was a little nervous but it was nothing new to me. So, I told her… “Go Team!” haha! She laughed and then told the Resident in the OR what I said. If anything, I’m very silly. I am finally chauffeured back to the OR room while chatting it up with the driver of the bed. I mean, pushing those beds looks hard! But the woman said the bed has a steering gear. Who knew?? That’s pretty awesome! Once I’m in the OR, I get through the heart cath after being brutally (*wink*) being stabbed in the neck repeatedly to numb the area. Once I’m wheeled back to the recovery where where I started out before the cath, I was lucky enough to have my followup appointment in the room so that I wouldn’t have to go upstairs to the clinic. My doctor is one of the very few who does this for her patients. YAY!
The staff gave me a printout of the results from my heart cath, but seriously, it isn’t something that I can figure out very easily. So, I had the doctor explain some of it. Here’s mine compared to a normal heart.
Picture from The Merck Manual.
Representative right heart O2 saturation =75%
Representative left heart O2 saturation = 95%.
Atrial pressures are mean pressures.
AO = aorta; IVC = inferior vena cava
LA = left atrium; LV =left ventricle
PA = pulmonary artery; PV = pulmonary veins
RA = right atrium; RV =right ventricle
SVC = superior vena cava.
The PA (shown in my cath results) pressure is 52 which has stabilized over the past 5 years. So the doctor isn’t too concerned about it. She was happy that the blood coming back from my body has a 71% oxygen saturation. It is suppose to be above 70%. It is considered my “reserve” oxygen in case I have trouble. The FA, which is the blood that comes from the lungs and goes out to the body and it is showing 100% which is good because I am wearing 6LPM of oxygen during the heart cath even though it shows on my results paper as ROOM AIR. As you can see, my heart has some problems but I’m managing. I rest when I need to and play when I want to. *wink* Now that I’m older and supposedly wiser, I don’t do as many stupid, reckless things anymore. I don’t touch alcohol unless I want to try a sip of K’s cocktail at a restaurant, I don’t let myself get overly tired often by staying up past 3am, and I, for sure, am careful about what I eat. Although, I did eat pizza last night. I already feel the sodium at work. Darnit!
With these heart cath results, I feel relieved. The doctor agreed to continue the Tracleer at the half dose of 62.5 because of my weight and the fact that my pressures show that my heart is stable even at the lower dose. I did agree that at anytime I find myself starting to have more problems, I can always up the dose back to the full amount. I may be a rebel but I am NOT stupid with my health. My doctor was ok with this and K and I left happy and I felt this battle was worth it.
I can’t wait to show you what K and I have been up to with Christmas decorations! Next post… I promise! Stay warm everyone. You can always email me at goredrider@gmail.com Be sure to FOLLOW MY BLOG so you don’t miss a thing. THEO… I have NOT forgotten you. *wink*
Living On O2 for Life 
Thank you for this information, and providing this support system. Recently i have been told that i have pulmonary hypertension, for the past year i have been on 8 – 10 lpm oxygen. This is quite a learning process.. Thank you for sharing. Cynthia
You are so welcome. I share my experience of living on oxygen and all that goes with it because I was once very new to all of this. It was such a struggle and scary. What is your oxygen set up, if you don’t mind my asking? *hugs* I hope the PH medication will improve your symptoms.