Saturday, December 1, 2012

December 2011

We'll wrap up 2011 with a post covering the month of December. Since this is the first post of this month, there will be some blog stats at the end. (Even more interesting than last month's blog stats. Trust me.)

First, a quick update on me. I had my annual physical exam on December 14, 2011, and everything was still normal. I had also requested a 24-hour urine collection just to have that as a baseline for proteinuria. There was no indication of protein in the 24-hour collection, so hooray for me. I'm still asymptomatic.

As you recall, we had gotten excited about pursuing a domino liver transplant for Mom after talking with Cathy Tidwell at the familial meeting in Chicago. I don't think I've defined "domino liver transplant" in the blog before, so I will now. (Feel free to skip the rest of this paragraph if you don't need the lesson.) A domino liver transplant is when a liver from a deceased person (person A) is transplanted into a recipient (person B), and then the liver removed from that recipient (person B) is transplanted into a second recipient (person C). Liver A goes to B, liver B goes to C, liver C is disposed of. This procedure can be done when person B has just a little something wrong with their liver that makes it undesirable for person B, but person B's liver would be suitable for person C. In the case of fibrinogen amyloidosis the liver is the source, or "factory," of the misfolded proteins (amyloids) that get deposited throughout the body, primarily in the kidneys. Since it takes 40 years or more to see the impact of these amyloids, that liver (assuming it's good otherwise) would do just fine to extend an older person's life by 10 or 20 years. So one donated liver permits two people on the transplant list to get new livers.

Mom talked to her internist about this at her annual physical in November, and her internist gave her the names of two hepatologists (a hepatologist is a liver doctor, not to be confused with a herpetologist, which is someone who studies reptiles and amphibians.) On December 6, 2011 I went to Mom's quarterly nephrologist appointment with her. Her nephrologist wondered how successful a liver transplant would be for Mom given the amount of scar tissue she's likely to have in her kidneys, since scar tissue doesn't heal. She recommended we do two things. First, talk to a liver specialist about having Mom evaluated as a candidate for a domino liver transplant. Second, she asked if she could get some more info on Cathy's situation from her nephrologist, to find out what Cathy's kidney function was pre-transplant, how long she had had kidney problems, etc. So the nephrologist wasn't totally sold on the idea just yet, but she made some practical recommendations.

I swapped some emails with Cathy Tidwell over the next few days and put together a one-page chronology of her kidney history based on what she told me and what she had already written in her blog. The short version is that she was very close to needing dialysis at the time of her liver transplant in July of 2010. As of December of 2011 her kidney function was just good enough that she would not qualify for a kidney transplant. So although it's slow improvement and it may have stabilized there, it's still some improvement, which is much better than a decline.

Another interesting thing I learned from discussing this with Cathy was that she was the first fibrinogen amyloidosis patient to receive a domino liver transplant. She learned that herself at the familial meeting in Chicago. Up until then I had thought that a liver only transplant was a standard procedure for some fibrinogen patients, but now that I look again at the journal articles that reported on multiple patients with fibrinogen amyloidosis, I see that all of those patients with transplants received either a kidney or a liver and a kidney.

In December I also made an appointment with one of the liver specialists that had been recommended by Mom's internist. Unfortunately the earliest appointment we could get was January 30, 2012. So we'll have to wait until well after the holiday season to see about having Mom evaluated for a liver transplant.


New and Improved Monthly Blog Status Update

As previously mentioned, at least until I catch up to real time the first blog post each month will include a little blog status update at the end. This may only be of interest to me, so feel free to skip it. That's why it's at the end.

Months behind as of November 2012: 27
Months behind as of December 2012: 12
Total posts: 34 (15 in November)

New categories:

Email subscribers: 3 (Don't worry. I can't see the email addresses used to subscribe, only the count.)

Number of countries that have viewed the blog: 14
Prior to November, I think the blog had only been visited by people in the US, UK, Germany and Russia. The country list expanded quite a bit this past month, at least partially due to being mentioned on the familial amyloidosis support group. Here's the current country list, in order of total pageviews:

United States
United Kingdom

So, welcome to all of our international readers.

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