Upstate NY Amyloidosis Support Group Meeting

The first Amyloidosis Support Group meeting for the Upstate NY chapter will be held on Saturday, June 16th in Rochester, NY. The guest speaker for their first meeting will be Dr. Merril Benson. Dr. Benson is recognized Internationally for his research in familial, primary and inflammatory amyloidosis.

A light breakfast and lunch will be provided, and a RSVP is requested. You can find more information on the Amyloidosis Support Group website.

Summer Schedule

Life and work has been kind of crazy recently, which hasn't given much extra time to do anything, especially providing updates to the blog. And to be honest, I've tried to put as much distance as I possibly can from my experiences over the last two years, with the unrealistic hopes that I can look forward and return back to the normal life I had before I got sick. This has really conflicted me, as I feel that it's important to share my experiences with others who may find themselves in this situation. The result has been an inconsistent level of new posts. But like I've said before -- when there's no news, it's good news!

For those keeping score, it's been 264 days from transplant #2, meaning that I'm nearly finishing my ninth month. (God, that last sentence sounded like I was bearing child.) I think most of the effects from the chemo such as the "chemo brain", fatigue and low stamina are nearly gone, although I know that I'm still not 100%, since I still tend to be forgetful, and have this unhealthy obsession with reality shows. Hopefully both will clear up in the future.

The doctor's schedule is kind of weird this time, since I did not have a 6-month evaluation. Instead, I've had quick visits with my cardiologist and nephrologist on a semi-regular basis, with a complete checkup at my 1-year mark. Here's the upcoming schedule over at Boston Medical:

• June 5: Meeting with nephrologist to check my protein leakage and other kidney functions. I will also probably get some blood work to check my lipids. Gotta check those lipids, y'know?
  
• June 28: Meeting with the cardiologist. Since I probably will have submitted labs earlier in the month, I'm not sure what purpose this visit will serve, other than filling his pockets and pissing off my insurance company even more.
  
• August 20-22: The main event. This is my one-year evaluation over at Boston Medical where they will perform every test known to man on me. It's sort of like being a lab monkey, except that the lab monkey usually gets a banana for good behavior.

Trust me... if there's any news, I'll report it!

Niceland

Now that my body has recovered from the 4-hour jetlag, I feel like I have the energy to talk about my trip to Iceland last weekend. So ... yes, I survived. I was swallowing Lasix like candy, but I survived. It was an extreme pleasure to visit all of my favorite watering holes, and to meet all of my friends - some I haven't seen in over 5 years.

One of the major fears that I had over in Viking-land was that I wouldn't be able to find low-sodium meals while eating out, or that I would be unable to abstain from alcohol and other bad things while I was over on the "other side of the pond". I can tell you now with absolute certainty that all of that is true. My dinners consisted of some of the saltiest, unhealthiest foods I have laid my eyes on in a couple of years. Let's just say that on Saturday I was treated to some Taco Bell (which has only been in Iceland for two months, so it's a big thing over there right now). And that was a good meal.

I'll have to give the FDA credit for forcing nutrition information on the labels of every food item, since this rule is not present in Iceland, and they were rather missed. Most items will label the contents (in Icelandic, of course), but not the quantities. Most Icelandic foods have a ton of salt, so sticking to my diet was an exercise in futility. Most restaurants didn't understand my request -- for example, when I ordered some fish at one restaurant with no salt, they did so -- but covered it in soy sauce. So, I think you can understand why I gave up.

In any case, I fared rather well, and I attribute this to aggressively high doses of Lasix (20mg a day), and my visit to the hotpots in one of local swimming pools. The saunas there work every part of your body, completely relaxing you, and really helped in getting any spare fluid out. I actually lost 3 pounds while I was there!

Although I spent the whole time running around and breaking every rule of my diet while was there, I felt so much healthier. Perhaps it was the fresh, clean air, or the water in the saunas. Or maybe it was all in my head. In any case, I am already looking forward to my next visit.

You can find some pictures of my visit here.

Boston ASG Meeting - May 19th

Just a reminder that the Boston chapter of the Amyloidosis Support Group will be meeting at Boston Medical on Saturday, May 19th from 10 a.m. - 2 p.m. You can find more details here.

Unfortunately, I won't be able to make it as I will be out of town. But if you are near Boston there's no excuse for you! :)

First Trip

If things have been silent, it's because I have now returned to work full-time, and I'm failing to budget my time. For the last seven months, I've more or less laid around, with not a care in the world (other than my bloated legs and medical co-pays). Now it seems that the work week is completely wiping me out, and when I get home I want to stay as far away from a computer as I can.

One of the side effects of being back to work is that I have regained most of the stamina that was lost through the chemotherapy. I wouldn't say that I am 100%, but I've been so weak for so long I've forgotten what "100%" would actually be!

Nothing new to report on the edema. Life is good as long as I stay away from the salt. Once I indulge in a few meals at the cafeteria, I still retain water rather quickly. Now that I am starting to do "business lunches", this is starting to become a problem again. I was given the opportunity to take a 24-hour protein lab in May to get a sneak-peek on how well my kidneys are improving, but since I don't think there's much going on, I think I will wait until my appointment in early June.

There is some good news -- this weekend I am taking my first trip in nearly 2 1/2 years. I'm off to Iceland for a dirty weekend, and to meet up with old friends who have probably forgotten about me by now. For those who don't know, I lived in Iceland from 2000-2002 for work, and came back with a lot of friends and even more memories. (I have some old pictures here). Since I left, I have always went back to visit every year. My last trip there was in January 2005, before I got sick. I had planned to visit last spring, but my body was not up to the task. Although I am not in ideal shape, I figure that I might as well go and try to make it through. I'm not to enthusiatic: after a few pyslur and some lambakjöt, my legs will look like inflatable balloons.