A Swell(ing) Journey Part X: Good Place, Bad Roommate, “Bad” Results

8 08 2008

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.

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11 responses

8 08 2008
nathaliewithanh

My feeling about the whole adventure is a four letter word. If someone put a catheter anywhere near my neck, that someone better come up with what the hell is wrong with me otherwise they can’t touch me anymore.

Your second roommate sounds like my sister! I’m selling her on eBay. On her way to the hospital for her secret gastric bypass (she had told people she was going to have stomach cancer surgery), she ate 3 huge chocolate sandwiches. After checking in, she left the hospital and had a three course meal at the corner restaurant, then she had a last chocolate sandwich for second dessert. THEN she was sick all night and she could not have surgery the next morning!

I might have something up my sleeve to cheer you up… We’ll see.

8 08 2008
Dead Charming

This is gonna seem kinda random from someone who’s never left a message here before…but just so you know, people on the other side of the country are following along and we care. We might not comment all that much, but it’s only because we don’t know what to say.

8 08 2008
MrsWaltz

Following in Dead Charming’s footsteps, our take here in Exile (which, I believe, is actually darn close to your neck of the woods) is that we might not say it all that often, but we ARE paying attention and we send best wishes for you and your family. Here’s to the healing power of Good Goat JuJu 🙂

8 08 2008
morethananelectrician

I guess being stuck in a van with strange obnoxious women for two days is a bit better than your roommate battles.

8 08 2008
pamajama

I’m so glad you updated. I’ve been thinking about you. Not in a freaky stalker way. Unless you’re hoping for that. LOL

11 08 2008
Taoist Biker

Man, this whole “maybe this…nope” stuff has GOT to be frustrating beyond the ability of the English language to express.

11 08 2008
Kidney Transplant Slacker Gets Wings « nathalie with an h’s Confessional

[…] week, Matt flew to St. Louis for a test to determine the cause of the problem, got a nice catheter into the […]

11 08 2008
Mary Myrick

Hi Matt! I am truly sorry that the source of your swelling was not revealed in the test at Barnes. I’m sure it was a huge disappointment. I am hopeful that having another team of docs on your case will improve the chances of figuring out what’s going on.

I have been trying to keep my family up on what’s going on with you and we all are thinking of you and wishing you the best. We MUST get together soon. I believe my brother Ron is still planning on a gathering at his house over Labor Day weekend to which I’m sure you and your family are welcome. You know our family! The more, the merrier!!

Take care, Matt! Love, Your cousin, Mary

12 08 2008
Catie

Sorry to hear that you don’t seem to be closer to a solution! And what a crappy roommate? I always want to tell people like that, “Don’t you realize that these people are trying to HELP you?”

12 08 2008
mel

I’m bummed too and wish I could do/say something!

You’re in my prayers!

27 10 2008
kimiam

I hate that you’re still having to figure this out, but I also love that you’re still alive to do so.

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