JOURNAL:
Today was Day 2 of the Transplant Evaluation. I struggled to wake up when the alarm went off, but we made our way to the car where I did my first treatment and found the building I would go to after the transplant for Pulmonary Rehab. We did some paperwork and then I did a 6-minute walk, which went well except I was a little more short of breath than usual. After that, she showed us where I'd be exercising and I filled out a survey about shortness of breath.
Next, we headed to the hospital where we met with the social worker to discuss support and expectations for transplant. We also met with the nutritionist to talk about goals pre and post-tx. A financial counselor came in to talk about my insurance coverage, and we met with a pharmacy financial counselor to talk about expenses from transplant medication and what to do if we need help affording meds or have any trouble getting them.
We had lunch and then the last thing we did was go to the other side of the hospital for my ABG and PFT's. I had heard horror stories and some not-so-bad stories about ABGs, so I expected it to go really well or really terrible. They left Alex in the waiting room and took me back. The first lady tried to get an ABG on me, but she couldn't get it, so then another lady volunteered and successfully got one, although it almost clotted off at the end. They told me if they couldn't get the second one they just stop and let the transplant doctor know. The first ABG was extremely painful and I was squeezing my water bottle and trying to take deep breaths and breathe through the pain. The second ABG was a lot more gentle it seemed like until the very end. I'm still in pain, but at least it's over. It turns out I also have small arteries and not just small veins.
I was expecting pft's to be either my standard pft's (3-4 tries) or the boxed ones where you have to breathe against resistance. I did two sets of standard pft's (without, then with a bronchodilator). In between those sets I had to do the resistance pft's where you breathe normally a lot and then they make you take a lot of short and rapid breaths, then they close it off and force you to try to push your air through it (feels like you're being suffocated), then they have you do a normal breath, breathe out, big breath, breathe out slowly until you're empty of air. I also had to do pft's where you breathe in gas and hold it for 7 seconds and push it out hard and fast until your lungs are empty... I had a coughing attack on the first one and messed it up, so I had to do two more. I almost threw up and had a hard time recovering from all of the tests, but I did it!
I just heard back from the cf team after letting them know how I've been feeling lately and they want me to do three more weeks of Levaquin. I figured I would call them after I got labs and pfts since that's usually all they want anyway and they could just view the results. I asked a few questions about some results, but will talk to the head transplant doc tomorrow and they said she will be able to explain everything to me. I think everything went well, all that was off I guess was maybe my PH from my blood gas, and my arterial oxygen was low. My pft's were what they've been averaging, so that is good news that they aren't way down.
In honor of today's ABG experience, I've decided to bring back a song I wrote about them one time when I was inpatient (had never heard of them, but my RT was challenging me to write about different topics). I wrote this after Google searching what an ABG is.
SCHEDULE DAY 2:
Pulmonary Rehab, 6-Minute Walk 8:45 AM:
Meet the Pulmonary Rehab Director, tour the building, and discuss the program and expectations. Walk for 6 minutes to evaluate how far I can walk, oxygen needs, and heart rate.
Meet with Social Worker 9:45 AM
Meet with Nutritionist 10:45 AM
Meet with Financial Counselor 11:15 AM
Talk about insurance coverage
Meet with Pharmacy Financial Counselor 11:30 AM
Talk about medication coverage
LUNCH BREAK
PFTS (Pulmonary Function Tests) & ABG 12:45 PM:
PFTS assess a number of things from total lung capacity, and forced expiratory flow in 1 second, to damage of lungs and small airways by way of a series of trials blowing hard and fast into a machine. ABG (Arterial Blood Gas) uses a needle through an artery to determine lung damage and how well the body is exchanging oxygen and carbon dioxide, etc)...
NPO (Nothing to eat or drink) after midnight.
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