Media Coverage In Rochester

I have been conversing with MaryAnn Kraft since my first stem cell transplant in 2005. We've been giving suggestions and tips to each other as her husband, David, was also diagnosed with AL amyloidosis.

WROC 8 in Rochester, NY has aired a health segment on David and the disease yesterday. It is now available online to watch! Here is the writeup, and here's the video.

MaryAnn is in the process of starting an amyloidosis support group in the Syracuse, Buffalo and Rochester area. If you are a patient or know someone with amyloidosis in this area, you can contact MaryAnn at .

Inching

I didn't want to jinx myself, so I've held back on posting about it, but it appears that my kidneys are continuing their healing process. It has tended to be a "two steps forward, one step back" routine, but the numbers show they are moving again, if only a little bit. I've been able to better tolerate the all-day sitting than I had in January, and I've even been able to skip the water pills for a couple of days at a time. I still have edema throughout my body, but it's at a lesser intensity than it has been in the past.

Of course, this progress is coming while I stick with my low-sodium diet. I've found that all it takes is one day of cheating, and I will still swell up like a balloon. So there's still a long way to go.

When I see my nephrologist in two weeks, I will tell her about my intention to start taking bromelain. Bromelain is a composition of protein enzymes. It can be found at most health food stores. There is more than anecdotal evidence that bromelain can help digest amyloid in the body (I wasn't able to find a link on the Internet to the study). As an enyzme, it doesn't look like it there are major side effects, and at the very least, help with some forms of protein digestion. I'm all for natural remedies -- especially if it helps me get off the conventional ones.

Boston Support Group Meeting

A reminder for all patients and caregivers in the Boston area that the Boston Amyloidosis Support Group meeting will be taking place next Saturday, February 17th, from 10 a.m. - 2 p.m. Same location, different time. I'd like to stop by, but I'm trying to take a break from the hospital visits for a while. Don't worry, I'll be meeting my quota in the next few weeks.

For those of you in other areas... you should check the Amyloidosis Support Group web page for support groups in your area. They are located all over the country.

6-Month Checkups

Oh, February. This is probably my least favorite month. It's cold, everyone is sick, electric bills are high paying for the heat... and did I mention that it's cold? The only thing going for it is that it has a holiday. I believe that George Washington will probably be noted by future historians for two things -- being the first president of the United States, and giving all of us cold, weary souls a day off in February.

One of the great results that I got from my three-month evaluation last December was that my numbers were so good, that I would not need to come in for the follow-up evaluation this winter. It was a little unsettling that I would have to wait until August until I got the results of my second transplant, but I figured that since Boston Medical has been my second home for, well, quite a while, it probably would do some good to get away. The amyloid clinic is basically three days of being poked, prodded and falling asleep in the waiting room, so not having to do that for a while is a plus.

Of course, whenever something is too good to be true, it usually is. Although I wouldn't need to be checked up in the amyloid clinic, I still needed to have follow-up appointments with my nephrologist and cardiologist, due to my edema and high triglycerides. They were scheduled for the end of the month, about the time that I would have come in for my six-month evaluation. And where are my doctors located? At Boston Medical, of course. So much for escape from the clutches of the hospital life. Just when I thought that I was out they pull me back in.

What a pain in the ass it was to set those appointments up. At least in the amyloid clinic everyone works together and you can get things done on the same day. But setting up appointments with the same doctors separately? No,no,no,no,no,no! The kidney clinic is only on Tuesdays, and the lipid clinic is only on Thursdays. And of course you need to come in for labs beforehand. And can you guess what days they have labs?

So I have visits to Boston Medical on 2/27, 3/1, 3/8 and potentially 2/22 and 2/26 to drop off the 24-hour urine lab. Makes me long for the days when I only had to spend three days at the amyloid clinic.