!!MOD NOTE: An update from Laurie and Deb
Many apologies! Laurie gave me an update a few weeks ago, and my August/early September has been so crazy that I thought I'd posted it already. :P I have made edits/updates to this to account for what I know has happened since she originally wrote the update.
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Update from Laurie:
Deb awoke with a high fever in the second week of August, was admitted to the hospital with an infection, and the new porta-cath had to be replaced, which involved a couple of surgeries, about a week apart. This is Deb's 11th porta-cath, which makes its replacement a fairly routine experience, though it's exasperating that it only lasted a few months, when her previous one lasted six years. Fortunately, the infection hasn't sent her liver function into a tailspin, and after just two treatments of antibiotics she was doing much better. She was in the hospital only a few days. [Ed note: akycha and I visited Deb in the hospital and she was in excellent spirits.]
The summer months in review:
*I noticed that one of Deb's medications has a black box warning and lists many of her symptoms as side effects. After she stopped taking it, her health had a dramatic improvement, and she has been more energetic, cheerful, and even joyous than I've seen her in years. She even eats with appetite--real food, like hamburgers--though she has lost a couple of more pounds.
*After several days of frustrating and peculiar obstacles that made me feel like I was in a mundane but complicated action thriller, we finally managed to send Deb's blood to New York for genetic testing. We haven't gotten the results yet. [Ed note: This was a while ago, so hopefully they've gotten the results by now! The reason they need Deb's genetic testing is to make it easier to make sure that her brother doesn't have the same mutation.]
*I finished the second revision of Air Logic.
*We fell into a lucky deal to rent a gorgeous, rustic, remote cabin in Maine that was a few steps from the river I yearn to live next to from an old time Mainer who regularly appeared at the door with blackberries and blueberries that he had just picked from his own yard.
*We were able to continue our tradition of celebrating Deb's birthday at Moody's Diner, with chicken croquettes and coconut cream pie, though we did it a day late because I had a badly-timed sick day.
*Lahey called on the day before Deb's birthday and told her she was on the organ donor list...at last. Her MELD is 16; 15-20 is considered optimal for a transplant; but in New England transplants tend to be in the 28-32 range due to a shortage of cadaver livers. (MELD scores range from 6 to 40.) [Ed note: Unfortunately, the infection put her back on standby -- I don't know if she has been reapproved. Fingers crossed that she has.]
*The medical work-up of Deb's brother has begun, and seems to be moving quite quickly. He'll soon be flying out here for a liver biopsy. If I were him, my head would be spinning. [Ed note: I have not heard if this has happened yet.]
*At the advice of the social worker at the transplant center, I will not take a leave of absence for the Fall semester. Therefore, unless Deb's condition starts to deteriorate, the transplant surgery won't be scheduled until after mid-December (assuming her brother works out as a donor) and I'll take a leave of absence during the Spring semester to look after the patients.
*The lull in crises has given me some breathing room in which to work on my own issues. I seem to gradually be becoming less of an automaton, and when I think about the last couple of months I can actually see how much better things have gotten for both of us. We have a hell of a trial before us, but right now things aren't so bad.
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I promise that the next time I get an update, you'll see it in a more timely fashion! Yeesh.
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Update from Laurie:
Deb awoke with a high fever in the second week of August, was admitted to the hospital with an infection, and the new porta-cath had to be replaced, which involved a couple of surgeries, about a week apart. This is Deb's 11th porta-cath, which makes its replacement a fairly routine experience, though it's exasperating that it only lasted a few months, when her previous one lasted six years. Fortunately, the infection hasn't sent her liver function into a tailspin, and after just two treatments of antibiotics she was doing much better. She was in the hospital only a few days. [Ed note: akycha and I visited Deb in the hospital and she was in excellent spirits.]
The summer months in review:
*I noticed that one of Deb's medications has a black box warning and lists many of her symptoms as side effects. After she stopped taking it, her health had a dramatic improvement, and she has been more energetic, cheerful, and even joyous than I've seen her in years. She even eats with appetite--real food, like hamburgers--though she has lost a couple of more pounds.
*After several days of frustrating and peculiar obstacles that made me feel like I was in a mundane but complicated action thriller, we finally managed to send Deb's blood to New York for genetic testing. We haven't gotten the results yet. [Ed note: This was a while ago, so hopefully they've gotten the results by now! The reason they need Deb's genetic testing is to make it easier to make sure that her brother doesn't have the same mutation.]
*I finished the second revision of Air Logic.
*We fell into a lucky deal to rent a gorgeous, rustic, remote cabin in Maine that was a few steps from the river I yearn to live next to from an old time Mainer who regularly appeared at the door with blackberries and blueberries that he had just picked from his own yard.
*We were able to continue our tradition of celebrating Deb's birthday at Moody's Diner, with chicken croquettes and coconut cream pie, though we did it a day late because I had a badly-timed sick day.
*Lahey called on the day before Deb's birthday and told her she was on the organ donor list...at last. Her MELD is 16; 15-20 is considered optimal for a transplant; but in New England transplants tend to be in the 28-32 range due to a shortage of cadaver livers. (MELD scores range from 6 to 40.) [Ed note: Unfortunately, the infection put her back on standby -- I don't know if she has been reapproved. Fingers crossed that she has.]
*The medical work-up of Deb's brother has begun, and seems to be moving quite quickly. He'll soon be flying out here for a liver biopsy. If I were him, my head would be spinning. [Ed note: I have not heard if this has happened yet.]
*At the advice of the social worker at the transplant center, I will not take a leave of absence for the Fall semester. Therefore, unless Deb's condition starts to deteriorate, the transplant surgery won't be scheduled until after mid-December (assuming her brother works out as a donor) and I'll take a leave of absence during the Spring semester to look after the patients.
*The lull in crises has given me some breathing room in which to work on my own issues. I seem to gradually be becoming less of an automaton, and when I think about the last couple of months I can actually see how much better things have gotten for both of us. We have a hell of a trial before us, but right now things aren't so bad.
---
I promise that the next time I get an update, you'll see it in a more timely fashion! Yeesh.