Archive for August, 2010

22
Aug
10

Here is the latest…


Well, last week I had my 90 day scan. I didn’t even have it on my calendar, because I thought this would be done and over with by now. Not so. The scan was completely clear and they said that I reacted so well to the Y 90 that it would be a couple of years at the earliest before anything would reappear. This is all good news and my main complaint seems to be having to stick close to home. Sall price to pay even though my Martha Stewart ankle bracelet has the teeth on the inside.

Currently, I am sitting at number two for the city. That means it could be any day and everyone is surprised that is it’s taken so long. In general around the country there seems to be a shortage of good organs. I have heard this from many sources around the country.

I did hear a story about a woman in her early 30s, with two kids, that is currently in the hospital with liver failure. Something is eating away at her liver and there seems to be no reason. The docs don’t know why but she needs a liver transplant. She is very sick and if something doesn’t happen in the next three weeks or so she will die. This brings home why all of us should be organ donors and encourage your family members to do the same.  I cannot imagine two kids being without their mother because there were no donors. But the demand has always exceeded supply and apparently is not getting further in balance. Here is a YouTube video that is applicable…

http://www.youtube.com/watch?v=my6MgAgxjKM&sns=em

Interestingly, I talked to the company that manufactures the Y 90 in Canada last week. I was investigating the possibility of the Y 90 treatment for another type of cancer for a family member. Y 90 as currently used mostly on the liver, but there has been some progress using it on other organs. They gave me the name of the doc they feel is the world’s expert on the process. Guess what. It is the same doctor that handled my case at Northwestern.

I can’t say enough about the talent at the Northwestern facility. Another acquaintance received a liver transplant at a center South of Chicago. She is not a complainer but the follow-up has been so insufficient that she is looking at alternatives. I realize some people may not have a choice with the transplant center. But assuming insurance coverage why not go to the best? If someone offers you a gift certificate for a meal there is no reason to choose McDonald’s when there is a fine French restaurant just down the street.

So, in the meantime I am full speed ahead having started some new projects etc. Will just put everything on a temporary hold when I get the call. The word for the day is hurry up and wait.

01
Aug
10

No News


No news at all. In fact, I’ve slipped to number 2 or 3 on the list due to some folks that are very sick. Saying that, it doesn’t much matter since the first two on the list could easily change or be the wrong size for an available liver. SO – still could get a call at any time and staying close to home. (Nancy thought a GPS ankle bracelet would be appropriate attire) Talking to the liver center last week, ALL of the liver centers had very little activity in July. Last year July was very busy and August was slow. So, you don’t know what you don’t know and I will know when they know. ( that’s a Rumsfeld quote)

One close friend was under the impression that I was up against the clock. Not so. Remember, there was only one small tumor and that was zapped by the Y90. So, it’s definitely GONE, but the only way to keep it gone is a new liver which is an absolute cure. I have had every scan known to man and my only other problem is my bad knee which I didn’t know about until they told me. (of course, it started to throb as soon as they told me) Had I gone to another liver center – say Indianapolis or St. Louis, this would be done and over with – but there is no hurry other than what I have self-imposed on myself. I have a great deal of faith and confidence in the liver team at NMH. In fact, two of the transplant surgeons live right in my building – one in my apartment two floors up! Sadly, there are a lot of folks who are up against the clock and will never get a liver. They will die waiting, which is a tragedy, so make sure you sign off on your driver’s license as a donor. The demand has always exceeded supply so it is a way everyone can make a difference.

Stay tuned!