So today was my first clinic day since I was officially listed and I decided to go solo today. My parents would have happily taken time off to bring me (as they have for all my previous appointments) and the transplant doctors also encourages patients to bring support with them, but as I have been feeling pretty good the last couple days I wanted to prove to myself more than anyone that I can still have some independence to take care of myself. So I made the drive to clinic day myself and actually made it without hitting much lunch hour traffic. When I arrived, I switched to the hospital oxygen tank but they had no cart to wheel it on… so my options were to carry a huge “E” tank that's heavier than my Portable concentrator, wheel my oxygen around in a massively large wheelchair or wait for a transport personnel to wheel me to my destination.. (I’d for sure miss my appointment if I waited for transport!!) So I decided on option #2. I got quite a few stares wheeling around a huge chair with my oxygen and pocketbook in it while wearing a face mask and also running into walls regularly (It was like a bad shopping cart on the right side so I was pulling left constantly) I basically looked like a whack job. Anyway… after getting vitals and maneuvering my large chair into the smallest bathroom for a quick bathroom break I get back to the waiting room to notice my doctors 1:30 patient arrived late at my 2:15 spot so I prepare myself as the clinic wait begins. The waiting room is filling up for different pulmonologists and my large chair is sitting by me holding my things, but its bulky and I keep trying to squeeze it closer to give people more room to walk by with various walkers and other chairs, etc. A few minutes later I hear a man beginning to get annoyed with the receptionist… I can tell immediately that this man has been getting the run around from receptionist to receptionist about where he is actually supposed to be getting his tests… they go back and forth about which floor and what building his papers say… he says he was just in that building and they sent him over to this building… etc. Unfortunately I know that game all too well and Columbia is not a small hospital to get around. He explains that his wife can barely walk from the elevators to the waiting room and now they've walked back and forth twice and no one can tell him where to go… Well without thinking much I figured this lady definitely needed my wheelchair for actual sitting and offered and INSISTED that he take it for her.… as for the large oxygen… I figured I’d just build some muscle since I was missing pulmonary rehab for this appointment.
The appointment itself went well, I met with my transplant doctor for the first time since being listed and signed some more paperwork and discussed how I’ve been feeling over the last month since I saw her in April. Since being off IV’s, I've began going to pulmonary rehab twice a week for 2 hrs each and have been getting structured outdoor exercise at least once on the weekends. We discussed how important it is now, while waiting for the right pair of lungs to match, to keep myself motivated and exercising enough to keep muscle mass while still being careful not to overdo it. One obstacle recently has been following exercise, I am having a bit of tunnel vision and dizziness but it doesn’t last long. We agreed that I will UP my oxygen from 2 liters to 3 liters and keeping the oxygen at 2 liters at rest. Another positive is I’m UP 2 LBS!! The transplant team is very happy with my weight (I then disclosed that I have an odd fear of feeding tubes and DEF don't want one). Many patients with cystic fibrosis that have a hard time maintaining adequate weight will eventually get feeding tubes for optimal nutrition. Thankfully my doctor agrees that she would never suggest a tube post transplant unless it is ABSOLUTELY necessary!! Phew.
All in all it was a good appointment. However I didn’t realize that every 3 months I would still need blood work so what I thought was a short walk back to the front to get my car, turned into 2 more hours of carrying a massive oxygen tank to the right lab to get drawn. I did not expect that I’d be getting the same run around as the poor man and his wife was getting earlier! And as I’m finally finished with my day just in time for 5:30 traffic home from Manhattan, a man from the front stops me about 50 ft from the door and gives me a cart for the oxygen. Haha. As exhausted as I am writing this, in bed at 8:30 p.m., I survived my first SOLO clinic day, on oxygen, by myself. Oh sweet independence! ;)