Tuesday, May 26, 1998
2:30pm
Dreama, Karen and I have been collaborating on a webring type thing for people whose lives have been touched by adoption -- well, they're doing most of the work; so far I'm just kinda sitting here and waiting until I'm needed and giving my input, since I had kinda jumped the gun and created a webring but not quite what they had in mind -- and since I didn't think I'd ever been to Karen's journal, I fired up IE and headed in that direction. I was right, I hadn't, and so I dived into today's entry.
It was all about weddings, and how she would like a wedding but knows her parents can't afford it, whereas her SO would prefer to just elope. It kinda sounds like Jev and me. To be totally honest, there's a part of me that would just adore a wedding complete with white dress, tiered cake, lots of flowers and so on. But realistically, not only can we (my mom and I) not afford it, but I just can't see myself in a wedding dress... not with this body! Besides that, the only member of my family who would even possibly come would be my mom; except for my oldest sister, I haven't heard from the rest of my family in a couple years.
Still... this is the one milestone in my life that I have a chance not to miss. I never went to any of the high school dances, proms, or any of that; heck, I never even went to one of my high school football (or other) games until after I'd graduated! When most of my classmates were going to Disneyland to celebrate graduation, I went home, and had a grilled cheese sandwich and a pity party. I'd really like this to be something special.
But, we'll just be starting out, and we'll need our money to get together our own household, buy a car, rent an apartment, buy furniture, and so on and so on. Maybe for an anniversary or something... I dunno. Stupid me, I'm sitting here with tears in my eyes typing about this. What's the big deal? I really don't know. I guess sometimes it would be nice to just have a normal life, at least for special occasions.
Yesterday, when I was hunting down links for Eisenmenger Syndrome and Scoliosis for my bio page, I found some interesting stuff. There are other people online who have Eisenmenger's, for one. I've never met anyone else with this same syndrome, so it's kind of nice to know that I'm not entirely alone. There is a 40+ year old man in Ireland, Tadhg Sullivan who seems to be doing very well (Eisenmenger patients don't typically live that long), and I wrote him an e-mail telling him a little about myself, and pointing him here and do my other web pages.
I found a few other links, and some medical information, as well. Some of that was comforting: as in the fact that they prefer not to do heart-lung transplants on Eisenmenger patients, because they generally do better on their own, and that a course of non-intervention is favored, until medical assistance is really needed. Other bits, however, were somewhat frightening: I've known that pregnancy could be risky, but I saw some stats saying that mortality rate is 50% among women and the unborn child. Not that I ever intended to get pregnant, but still... I worry enough about getting pregnant as it is, even with protection.
I read that Norplant and the progesterone-only pill are the preferred ways to reduce the risk of pregnancy -- that or sterilization . I didn't see Depro-provera mentioned though, and I wonder if there have been any studies of its use in cases like mine, and if the effect it had on me was at all typical. Norplant does *not* sound like something I want (they implant these little time-release things into your arm), and I'm wondering if it's the same sort of thing as in the Depro and I don't want to have another 5 month period, or discover that it has the same effect and then have them have to go back in and take them out!
I also learned that because of the reverse-shunt effect of the holes in my heart, the pressure in the arteries and veins between my heart and lungs is as high as in the rest of my system, and this is why my lungs have deteriorated. Normally, the pressure in that portion of your circulatory system is much lower than in the rest of the body, I guess because the blood doesn't need to be pumped so far. That was something I really didn't understand, and I guess I never grasped enough to ask the doctor about. But now I know.
I read about a procedure done in some other country (I believe it was Brazil) where they put a band around the pulmonary artery (heart to lungs) to restrict the flow, thus lessening the pressure of the blook actually flowing through the lungs. In the patient the abstract was about, the lesions that had occured in the lungs due to the overly high pressure dissapated, and the lungs returned to near normal. After this, the patient had surgery to repair the holes in her heart, and did very well after that.
It sounds scary (2 surgeries, minimum) and risky, and it sounds like it's something that hasn't been done very much yet, but maybe down the line, it may become a viable option for people whose lungs haven't yet been really damaged by the condition. Somehow, I kinda doubt I fit in that category.
Miracles
Yesterday afternoon, Mom and I went out to Wal-Mart to look around and pick up a few things. I spent about $36, half of it on a hardcover book, Christopher Reeve's "Still Me." I was going to try to finish reading Byzantium last night, since it's due back today (though it doesn't look like it's getting back on time), but I wasn't really getting into the story, so I started reading the new book instead. And I read, and I read and I read, until about 1:30 or maybe 2am.
It's half flashbacks of his life before the riding accident (which was three years ago, tomorrow), and half his coming to terms with the injury, recovery, and looking for a way to repair those who have been paralyzed by spinal cord injuries. I haven't been following his story too closely in the media, but I read in the book where he has declared a goal to walk again by his 50th birthday (still 6 or 7 years away at this point). I was just finishing up one of the chapters about his progress and the spinal cord research and funding when I finally went to sleep last night, and some of the progress the scientists have made is amazing! They can regrow nerve paths in rats, and are having promising results in primates as well, so maybe there truly is hope yet.
Thinking about all the progress man has made in medicine, I wonder how much progress is yet to be made in the areas that would affect me. I really wouldn't mind if some 24th century doctor appeared out of nowhere and whisked me away for a day or two, to return me physically whole... honest! But of course that's nothing but fantasy and science fiction. Oh well... maybe 21st century medicine will come up with a low-risk, promising solution. One can hope, anyway.
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