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The ramblings and observations of a kidney transplant recipient, although not necessarily for that reason.

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Tuesday, August 08, 2006

Going into this transplant I was told by my pre-op nurse coordinator that I would need have an acute sense of when my body is feeling "you know, just off". Those little changes in how you feel can be symptoms of much larger problems. This is something I've taken seriously. I mean, yeah, I'm not on top of all my monitoring (i.e. blood pressure, temperature, weight) as well as I could, but I do think I have developed a keen sense of how I'm feeling, noticing the small changes daily and honestly reporting them to pertinent people.

I'm not a person who is generally wary of doctors. In fact, I'm probably more trustworthy of them than most. I'm able to recognize that everyone at the hospital that I'm led to deal with probably knows more about what's best for me than I do, be it the parking valet, the elderly volunteer that runs the information booth, the admission registrar, the orderlies, nurses, interns, residents, fellows, or surgeons. Surely at any level of care beyond their duties, they wouldn't overstep their bounds to give me advice or service beyond their knowledge.......and I trust (maybe falsely) that from each of them. Also, since the surgery, I can only say that the team of people who transplanted my new kidney are nothing short of amazing. The fact that they provide a high level of service to 60-80 people a year, plus the carry-over complications from prior years only adds to their amazingness.

This past Thursday, the surgeon (or as everyone else calls him The Head Honcho), who has been dealing with my follow up personally and from what I can ascertain this is not standard operating procedure (you usually get handed off to a follow-up nephrologist), told me that because my white blood cell count is dangerously low, I need to be even MORE aware of small changes in how I'm feeling because any bacteria, virus, or other infections would hospitalize me IMMEDIATELY.

Since Thursday, I've completely avoided bacteria-ridden raw foods (not just meat....fruits and veggies too) and also shyed away from all you germy people as much as possible. Friday I came down with a MAJOR migraine that knocked me out of commission for the night at 7pm, along with a fever of 99.9 just low enough to keep me from bugging the on-call nurses over the weekend. Saturday, right after I ate dinner, I felt a sharp pain develop in my abdomen, high and towards the right side, definately not my new kidney (which is in my hip). It kept me awake most of the night, tossing and turning and I almost called the hospital for this one, but I thought I would wait it out until morning and by then it had gone away. Monday night (different than the stomach pain of Saturday), I had a very* upset stomach, along with it several trips to the toilet for.... well.... nevermind.... I don't want to search for a picture of something would be relevant here. Let's just say it wasn't pretty and I am still feeling it today.

The things I've been feeling lately are a far cry from small changes in my health. These were huge. They limited my weekend and are proposing to hinder my week. Among these problems I've been having, I've been to the hospital twice, a follow-up appointment with the surgeon on Monday and then again today for another shot of Neupogen. Yesterday the doctor dismissed my headache and stomach pain during the first part of the weekend as nothing to act on immediately. If either persist he may check it out** This morning, on the way to the hospital for my shot, I was determined to report Monday night's stomach troubles to the nurse coordinator, and when I reached her by cell phone, she made it sound like no big deal and that she would tell the doctor and call me if its a problem. HI! I have 3 white blood cells in my body, don't you think this could be from a bacteria of some sort and shouldn't I hightail it to the ER? She called and he didn't seem concerned as long as I don't have a fever (which I don't), but I should call back if it gets worse.

All things said about loving my doctors being true, I still feel I own the right to express the following complaint. Everywhere you go at Stanford visits, ER, infusion center (where they give me my shot).....the first thing on the nurses' questionaire is "Are you having any pain?" You open your heart to them, humbly expressing embarrassing moments of pain in personal places, trying to be as informative as possible, hoping that whatever it is they mark on your chart will set off a miraculous series of events throughout the hospital that will start you feeling better before you walk out the door. But what do you get from them instead? And from the doctors sometimes? And even the parking valet on rare occasion? The look shown in the picture above. Its not comforting.

Moral of the Story: After a kidney transplant, as critical as it may be to report minor changes in feeling, no one cares if, in the middle of the night, you scream loud enough wake your roommate up from the other side of the house while you're sitting on the toilet. Apparently that's not important. Except for maybe your roommate.

*When writing I try to avoid using the word very. It often slips into my writing, only to be edited later, if I do any proofreading, that is. A composition teacher once told me that if I had to use the word very before another word, then I probably wasn't using the right word to convey what I meant and to find another word. I don't think I know another word that will politely convey how VERY upset my stomach was.

**The surgeon didn't really dismiss my problems. He attributed the headache to being a side effect Neupogen, which will stop. And Saturday's stomach pain sounds like gall stones, but he doesn't want to investigate it unless it happens again. It could have just been gas or something. I trust him to fix everything he can.
posted by othur-me @ 11:38 AM  
  • At 10:20 AM, Blogger mjd said…

    I hope that you are feeling better, getting the help that you need , or at least a decent look from the medical people.

    Have you visited this site,, written by another organ transplant recipient?

  • At 10:34 AM, Blogger othur-me said…

    mjd-thanks. Feeling better, but the looks are ongoing.

    I will check out that site.


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