Mar 04 2017

The AmBisome Patient

Published by at 10:43 am under Health & Fitness

That’s what they sometimes call me at the infusion center. AmBisome is a trade name for amphotericin. According to Wikipedia:”Amphotericin B is well known for its severe and potentially lethal side effects… Intravenously administered amphotericin B in therapeutic doses has also been associated with multiple organ damage. Kidney damage is a frequently reported side effect, and can be severe and/or irreversible.” The AmBisome patient is the one who requires three-and-a-half hours of treatment every day, except when her kidneys go haywire.

This leishmaniasis experience has been awful. Four things worry me: that it will spread; that the scar will be large and hideous; that the treatments won’t work; that my kidneys will be permanently damaged. All of these are possibilities.

To summarize: first there was the sore on my left cheek that didn’t heal and that kept getting bigger. Then there was the two-month wait until it got diagnosed. Then the visit to the infectious disease specialist who, a week later, plunked me into the hospital for treatment. Then daily three-plus-hour infusions. Until my kidneys rebelled. More on that shortly.

I went in to the hospital on a Wednesday evening around 6:00, after waiting all day for the call that said to come in. When I arrived, the head nurse asked, “Where have you been? We’ve been ready for you for hours.”

It is very hard being stuck in a hospital when you feel fine. Because I felt fine, I didn’t get much attention from the nurses. On the first day I did get attention, however, from herds of baby doctors (those in training) who wanted a gander at my leishmaniasis, since it’s so rare in the U.S.

I had a private room with a big window and a shade that I could control from my bed.

On Wednesday night at midnight they put me NPO (no food or drink by mouth) until the following day when the ear, nose and throat specialist was due in to perform a biopsy of a suspected spot of leishmaniasis on my nose. The doc didn’t show up and didn’t show up, and I was so hungry and thirsty. I whined to the nurse, Alma, who tried to find out where the doc was, to no avail. He finally showed up around 4:30 p.m. “I’m really thirsty,” I complained. “Then drink,” he replied. “But I’m not supposed to.” “Oh, it doesn’t matter.” A whole day of no liquids for nothing. The ENT dude sprayed the inside of my snout with a numbing agent that tasted horrible, and then stuck a long, bendy rod with a camera on the end into each nostril and down my throat. It wasn’t pleasant but the results were good: no sign of leishmaniasis there. Then he did a biopsy, warning me that it would permanently pull up my lip a little. Luckily, it didn’t have any cosmetic side-effects after all, and two weeks later the biopsy confirmed that there was no mucosal leishmaniasis evident. So it looks as though I have just the cutaneous kind.

Friday rolled around and I asked if I could be released. By that time, I’d gotten my PICC line inserted into my left arm (the portal for the medicine). It’s the upper one. The lower one is an IV.

But no: they asked me to stay till Sunday. Those last two days seemed so long. I worked on knitting a pussyhat for Michael and messed around on my computer a lot and read Half Broke Horses by Jeannette Walls.

Over the days I had some visitors, which really helped: Anna and Frank, Karen M. from book group, Eleni and Emmy, Nancy, Rubén and Elana, and Adi and Michael with their musical instruments.

Another saving grace was Facebook. I posted a status update:

“I’m in the hospital, on account of a tropical disease I picked up in Costa Rica in September. I got bitten by a sand fly that transmitted a parasite that’s busy chewing up my cheek. Luckily, it’s not contagious between humans. Unluckily, it will leave an ugly scar. I’ll have to be in the hospital for three or four days, they’re guessing, with daily infusions for a total of two to three weeks. I know it could be worse, but still, not fun.”

I got the nicest comments back, which kept me entertained for quite some time:

  • You’re one of the strongest women I know, dear Ginna! Prayers and good thoughts…
  • How f-ing unfair! Takes fortitude to get thru. Don’t worry: everyone will be staring, as usual, at the rest of your beautiful face!
  • Heal up you are needed!
  • Ooh pole sana [Kiswahili for “very sorry”] my Ginna!! Praying for you!

After five AmBisome treatments, they released me from my medical prison on Sunday, putting me and my suitcase and some flowers in a cab. It was great to get home.

The very next day I started at the infusion clinic, where the nurses and staff and super-nice. Unfortunately, after just two days there (a week of treatments), my creatinine (kidney function) levels spiked to double their normal range.

I won’t bore you with the daily details from here on, except to say that nearly every weekday I’ve had to go into the clinic. More often than not, I’ve been sent home after the blood tests revealed impaired kidney function. I’ve returned a day or two later to find out that things are still messed up. So I’ve actually spent more days missing treatments than I have been getting treatments.

The doctor wrote and said she had a change of plan. Instead of giving me a total of 21 infusions (which is a standard number for this kind of thing), she would dose me by body weight instead, bringing the number of infusions down to 13. Now if only my kidneys would recover long enough for me to get these last two. But it’s been over a week of kidney mess-ups and still little improvement on that front. Meanwhile, the leishmaniasis is not being treated.  So much waiting.

One response so far

One Response to “The AmBisome Patient”

  1. Molly says:

    > “Instead of giving me a total of 21 infusions (which is a standard number for this kind of thing), she would dose me by body weight instead”
    Wait, what?! I don’t think you told me that bit before. Why wouldn’t they have dosed you by body weight to begin with?! That seems far more logical.

    It’s so frustrating to hear of all the little ways that Kaiser has been muy disorganized, and left you waiting or thirsting or otherwise discontented out of carelessness, rather than need. Bah humbug, I say.

    You are a very brave goyl and it’s very sucky that you’re having to deal with this. But you are handling it with remarkable grace, if that counts for anything.

    I shall keep all of my fingers and toes crossed that your kidneys settle down soon.

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