Monday I had all my appointments at the Cleveland Clinic in Ohio. It was a very long day, way longer than it should've been. We got to the clinic 45 minutes before my first appt so that I could get the bloodwork out of the way. After that was done, we headed up to the pulmonary floor, still way ahead of my scheduled time. The receptionist said she'd put me in for my pulmonary function tests, and that I shouldn't have long to wait. Wow, was she wrong! My first appt was scheduled at 9:45, the next one (the walking test) at 10:15. I didn't even get the first appt, and the 6 minute walk (6mw) didn't happen until 11am, when I was supposed to be in another building getting my echo done. It was frustrating to say the least, and I was so antsy by the time they finally got me that I felt like snapping. Grrrr!!
The tech who took me back for my walk started out by saying to me, "They told me you refuse to wear a mask, so you won't wear one?" I just looked at her and said, "Who told you that? No one has ever asked me to wear one." By mask, she meant an oxygen mask. So, she went to go find one. Then she has me on the o2 tanks, and tells me that when I do my 6mw, if my o2 drops below 60, I must stop and the test is over. Wow, that is a new one to me! But before I go on, let me explain how o2 saturations work. Any normal person out there has an o2 saturation (sat) of between 92-100. If someone drops below that, there is something going on, and sometimes the person needs to wear o2 to get it back into the 90s.
Then there are people like me. I have lived with low o2 sat levels most of my life. This is because I have pulmonary hypertension AND 2 holes in my heart. My blood is mixing all around, and I'm not getting all the o2 I need. However, because I've lived like this for 34 years, my body is used to it. My o2 sat level never hits 90. I'm lucky if I make it into the mid-80s. Resting, and on 3 liters of o2, I'm usually in the 70s, low 80s. But when I'm exercising or doing any heavy cleaning or whatever, I can drop into the low 60s, sometimes the mid-50s. I have been recorded the past 2 6mws into the high-40s. So, I think because of that, the tech just didn't want me dropping any lower than 60 sat, so that's why she told me that if I did, the walk was over!
So anyway, I'm on the o2, ready for the walk, wearing a mask I've never worn before ever, and she turns the o2 up to 15 liters. Yes, 15!!!! Most people have told me that they've never even heard o2 going up that high, but I knew it could because I've been told this before. I just never imagined I'd be put on it! So, I start my walk. The 6mw requires a person to walk up and down as much as they can in a hallway until the 6 minutes are over. Then it's measured in feet or meters how far the person walked. If the person needs to stop because they are getting too tired, that is fine, but the clock doesn't stop. So I kept going up and down the hallway, and the tech kept telling me how much time I had left. I wish I had told her not to do that, because it gets me anxious! She told me I was on 5 minutes, and I was thankful since I was really getting tired, but I didn't want to stop. 30 seconds later, she tells me we're done because I dropped to 58. Boooooo!! I wish she had just let me finish the last 30 seconds!! Oh well, it was over and I was back in a chair, trying to catch my breathe and boost my o2 levels again. I ended up walking 1050ft, which was less than last year, but last year I didn't have to stop. If I had actually finished the test, I would've probably been a few feet short or ahead of last year's distance. So basically, I remained stable in the 6mw, and I was so relieved that it was over!!
After more waiting and more lateness, we got to see my PH doc. He's great, and I'm so happy that he's kept me on as one of his PH patients. He's been focusing on lung transplants more, so he's only kept a select few PH patients. I'm one of them, whooo hoo! Anyway, TG was happy to see me and my parents, and he felt I was doing well because _I_ said I was doing well. And honestly, I am. With pulmonary rehab, I really think it's kept me pretty stable in the past year. So, there were no changes in my meds, and he had nothing else to suggest. Just keep up the good work!
He did agree to do my October support group meeting to talk about lung transplant as an option for PH patients. I'm glad!!
My parents and I left the pulmonary floor over 2 hours late, and headed toward the cardio building for my echo and visit with my adult congenital heart doctor. When we got into the building, my parents went to look for something to eat, and I just waited to get my echo done since I wasn't hungry yet. I waited almost an hour with a pager that buzzed when it was my turn. I felt like I was in a restaurant waiting for a table with that pager! I had a nice young lady who did my echo, and it was neat to be able to watch the screen while she did it. We chatted about this and that, and she finished the echo, and went to show the doctor to make sure she had enough images. She had to come back to get a few more, but then that was it, and I got dressed and went to find my parents.
I wolfed down a quick lunch that my parents had brought me, and then we were on our way to see my adult congenital heart doctor. More waiting, more waiting. Finally he came in and told me that my echo looked pretty good. My pulmonary artery pressure estimate was a bit lower than last year (although I didn't know the number yet), the ventricles in my heart looked good, but the thing that made me most happy was that the right side of my heart looked strong. That's what Dr. K. said. He seemed very pleased, and so did I! Seriously, again, I think it's a combo of the meds and the rehab doing the trick right now. We did talk about transplant as a possibility in the future, but he said it wasn't something they'd jump on right away. He said as long as the meds are helping me, that he'd like to keep me off any kind of list for as long as possible. Of course, I want the same thing. If it came down to needing a transplant, I would have to get a double lung and heart. And having 3 new organs suddenly is a major thing, and I'd be facing a ton more obstacles than I do now. So, after chatting about a couple more things, we said our goodbyes, and started making our way back to where the van was parked. Four hours later than we were supposed to be leaving!! I won't need to go back until a year from now, as long as I continue to do well!