I traveled to Barnes Jewish Hospital in St. Louis this week for an overnight stay and a test called a venogram. The hospital is renowned, and some doctors there thought it was possible that my mystery swelling could be explained like this: My old kidneys (I had a transplant and received a “new” one in 2003) may be constricting the flow in the vena cava. If so, my old kidneys could be removed to fix the problem).
The hospital is nice, and most of the staff was great! I’m very impressed with the doctors there.
Despite this, it wasn’t all good there. For one, I had to sign a consent the night before the test, of course. At that time (and I know they have to do this), they scared the %#&@ out of me by telling me everything that could possibly go wrong during the test, including massive internal bleeding, punctured lungs and emergency breathing tubes being put down my throat. I signed the consent, hoping that I wouldn’t be one of the unlucky few who actually have these things happen.
The first night, the person I shared the room with was great. He was to have a transplant the next morning, and despite his understandable nervousness, he and his family were pleasant. (Sure, they had to come in and check things on him all night, which meant very little sleep, but overall he was a good roommate).
The morning arrived, and I went down for the test. I had to wait quite a while in that department, but the people were cool. One staff member saw my book about one of my heroes and a second father figure, the late Jack Buck (long time St Louis Cardinal announcer and the type of human you want walking around on this earth). He talked about how much he loved Jack Buck as well and told a story about the time Mr. Buck had the exact same procedure done at exactly the same place I was to have it. That, along with the fact that he told me it was really a pretty safe procedure, made me feel much better. He also talked about the “entertaining” aspect of the busy department, which I experienced later when the older woman next to me kept arguing with staff, saying she wanted to talk to her son and doctor, and kept declaring she was NOT going to have anything done to her. (The staff was very good with her, by the way).
My turn finally arrived, and they gave me something to help me relax. Then they put a needle and catheter into the artery right by neck. Yes, this was a little scary and a little (though not too much) uncomfortable. The bad news arrived quickly: The test was normal, and this was “bad” news even though you usually would want tests to be “normal” because it meant that it did NOT explain the swelling I’ve had for 6 months. Back to the drawing board and the waiting game. The short story is that the next step is to wait a couple more months to see if being off of Rapamune ends up helping. It has not yet helped after 4 months of being off of it, but I understand that it could take longer. Some of the doctors still think this could be it, but others are starting to seriously doubt it based on my particular circumstances. They may start looking at problems with the lymphatic system (again, possibly caused by my old kidneys) if things don’t improve in the future. However, testing for this is apparently not as clear-cut.
So, I went back to my room feeling down that we still had not solved the mystery. I had to stay until the evening time so that I could get protective treatment due to the fact that they used dye and this can be bad for kidney transplant patients. As I returned to my room, I found out that I had a new roommate (the other was certainly moved to a private room following his transplant). The new roommate and his family had the appearance and behaviors of (and I hate to be this judgmental, but it’s true), pure white trash. The patient, who was unbelievably skinny and apparently had quite a few medical conditions, continually complained about wanting pain meds (even though he never SOUNDED as though he was in much pain, especially when no staff member was present). The doctors explained several times why he could not have them until some other things were fixed, but he basically didn’t listen to them. He also was instructed to eat nothing but ate several things, including fried chicken and candy bars provided by his extremely enabling mother, who complained frequently about doctors and nurses. The roommate also lied to staff a few times, saying he had urinated and forgotten to collect it in the provided urinal, when in fact he had not urinated at all unless he was peeing in his bed. This was significant because he refused doctor’s orders to be catheterized. The family also questioned whether or not men who wanted to be nurses are “fags” and watched annoying tv shows loudly. (Yes, I complained about this, and it was corrected. Yes, I considered telling someone about the guy lying and eating stuff he wasn’t supposed to be eating, but I decided that the staff was pretty sure what type of guy they were dealing with.)
As you can imagine, I was extremely happy to finally get out of there when I was discharged around 7 p.m.
So, it was a good place, but the 2nd roommate and the test results were a bummer. More when I have new news.