First ever familial amyloidosis conference

What an unusual course Lon and I have been on these last six or seven months. It seems that at every turn there has been someone "plop" right in our way to help us along. Two weeks after my diagnosis was this first ever conference. We are so glad we went.
There are three doctors in the US who are experts in this field and they were all there--including the doctor who identified my variation of familial amyloidosis. That's an indication of how new all of this is.
There are two major types of familial amyloidosis--TTR or transthyretin and non-TTR. The TTR is by far the more common of this rare disease. It has many mutations that affect about every organ and system. Although it is extremely rare there were four drugs being investigated to treat it. They involve altering or turning off the specific gene that causes it. It was pretty exciting sitting there listening to some truly cutting edge technology.
I was the only one there with my variation of the non-TTR type--fibrinogen alpha chain. I was also the only one there who had no clue whatsoever who I inherited it from. My amyloid is made exclusively in my liver and only messes up my kidney. Unlike the TTR type that can be "neutralized" because there are other avenues in the body to get the transrethin, my body needs the fibrinogen because that clots my blood. The absolutely great news is that my variation is the only type of amyloidosis that has "cure" and "excellent outlook" after it. Unfortunately it comes with a high price tag--a liver transplant. If I get a liver transplant amyloid will no longer be produced and hopefully my kidney will be able to recover enough to do its job. At this point my fate is in the hands of the Kaiser transplant committee. If they agree that a transplant would be beneficial, then it's on to the UCSF transplant committee. Am I scared? Nope, I'm terrified. Lon thinks that now would be a good time to be a good example--brave and stuff. I've always told the kids that when something is hard they need to reach all the way down to their toes and gather courage--I guess I'll have to put that to the test.

I got to meet the doctor that recomended the transplant. I wanted to make sure she knew I was a real live, kicking and screaming person. I also had some good one on one time with both the other doctors that were experts. It was good to get confirmation that this is probably the course of action I should be taking.

I also met others who had had liver transplants. Of course they were the ones who were doing well. They were happy that they had had the transplant. They had the TTR type and a liver transplant isn't a cure, but more of a bandaid--a good bandaid though. They have amyloid that is produced elsewhere in the body, but the liver is still the major production point and it slows down the production quite a bit. They said the hospital stay is about five days. And yes, my bikini days will be over.