I'mprobably going to commit medical blasphemy in this post by deriding the Cleveland Clinic, but so be it. They are not my kind of people and I am so glad that I didn't end up getting my tx there. But anyway, the details.
Like we know, my docs at Children's wanted to me go to Cleveland and be evaluated just so I was on their radar screen and we could get the process moving. Not a bad idea. They had me meet with a specific doc, Constance something, I forget her name (come on, I only met her once. Give me a break.) Since the testing began in the wee hours of the morning, we went up to Cleveland the night before, armed with a thick itinerary and several maps.
We stayed at the Cleveland Clinic Guesthouse, sort of a Ronald McDonald house for older people, but not nearly as fun. The place was sort of a run-down hotel thing...the lobby was nice, although it was crowded with wheelchairs and the clientele looked a little worse for wear. The absolute worst part had to be the rooms. The hallways were dark and depressing, and the rooms were actually sort of mini-suites, with a tiny kitchen and stuff like that, since the idea is you stay in these rooms for awhile. But they weren't much bigger than your average hotel room, and not nearly as nice as a suite at, say, the Hilton. Dark and drab and very 1960s. So I wasn't too thrilled, especially when I thought of spending three months in this room, since that's about how long you need to be closely monitored after tx. Oh. The. Joy. But for one night, I could deal with it.
We woke up about 6:00 the next morning and drove over to the clinic, which involved Dad becoming acquainted with the wonders of Cleveland's changable lane directions...wasn't that fun! Nothing says 'good morning' like having oncoming traffic heading straight for you. :) The other odd thing is that the clinic appears to only have one public entrance, so me and my mom ended up wandering around for quite awhile in the misty November morning trying to find out how to get in to this place.
Once we got in, I was subjected to the normal battery of CXR, blood draws, and, of course, CT with contrast, which was a lot of fun because by now my veins were essentially shot, and 'adult' hospitals don't do so well sticking me. But we managed (thank God!) to find access, even though it happened as about 6 or 7 guys over 50 watched the tech try to get the vein. The clinic has never, ever heard of privacy...I even ended up in some flimsy hospital gown thing while I waited for the CT scan, which is totally unnecessary. You can change right before and it doesn't take that long. Sheesh.
After all this, we went to eat before heading over to the Krile Building for the actual appointment with the tx docs. I was, as usual, the youngest in the room. We met with the tx coordinator, who told us about transportation to the clinic when the tx happened (since we lived 3 hours away -right on the cusp of 'too far' - we may have had to use a helicopter if the weather was bad. Cool!), and the finance people, of course!
Once in the clinic I did the usual PFTs, a 6 minute walk, and then some other PFTs that are beyond the normal FEV1s, like holding your breath for 10 seconds and the lovely 'box'. I also met with the social worker to make sure that I was psychological able to handle having a tx and that I had a good 'support team' in place for afterwards. And they tried to get an ABG (artieral blood gas)....woohoo that was fun! It involves finding an artery, which is located below your veins, where your pulse is. Well I have a weak pulse and tiny veins, so you can imagine how much fun this was. And the tech was not the nice ones at Children's...he was sort of a 'um, why can't I stick you?' and getting mad at me because I had bad veins! Well, sheesh. After two tries he thankfully gave up.
Finally my parents were allowed in and we met the doc. She was nice, and as she flipped through my chart she confirmed what Dr. M had said- I wasn't ready for a tx yet but it was a good idea to start seeing them. I would come back in June for another appointment and follow-up.
All in all, this appt. wasn't too bad, but I could already tell they were 'number people'--aka, not interested in what I could actually do, but what the numbers told them I could do. My own personal experience wasn't very important to them. That would become more irritating at the next visit, but for now I was just glad that the first experience with Cleveland was over.
1 hour ago