Summer 2009 Followup

I've had this itching feeling that I get the occasional visitor to this blog, although I no longer actively update it, wondering if there is any progress with my condition. I know that there are other patient blogs out there that are no longer updated, and I'm always wondering how they are progressing. And that is so frustrating!

But life goes on, and so do the yearly evaluations. There have been so many now. I was hoping they'd give me a coupon that they clip everytime I visit, like they do at the coffee shop. You know, buy 10 coffees, get one free. No such luck at the amyloid clinic, regrettably.

There's nothing more to say at this point other that I made it through another year, in the same condition I was when I was evaluated last fall. Considering that my warranty has run out, that is a good thing.

The doctors continue to be great at BUSM. Now if they can do something about this age thing! :)

Fall 2008 Followup

Hi everyone! As you probably can see, I have stopped blogging and "moved" the blog to another web address.

I did this for a couple of reasons. However, the main impetus was a comment given to me regarding patients and blogging. I've been told that insurance companies can (and will) use any information that a patient voluntarily enters on a web site as evidence, and can be used for determining pre-existing conditions. Because I wouldn't be able to report any "negative" updates, I've decided to remove the blog altogether. However, I have decided to keep up the story I have written so that other patients and caregivers may learn from my experiences.

In the near future, I'll be updating the links on the site (some are outdated) and make some other tweaks to make information more easier to find.

--

Oh yeah... I promised that I would give an update after my two-year evaluation. Well, I went back late last month, and did the whole "evaluation" routine over again -- the blood tests, chest x-rays, doctor consultations. I'm pleased to report that the treatment is continuing to hold, and I am still showing a complete response. I am in the process of returning back to the energy level prior to when I got sick. Whether or not I will eventually be able to do so remains to be seen.

Now if I can only get off of all these drugs... :)

2008

Best wishes to everyone for a healthy and prosperous 2008.

As you've probably discovered, I am currently on a hiatus from posting regularly to the blog. Short of some minor changes (like getting off the Tricor, slight edema improvements) there simply has been no news to discuss for the time being. After being a avid blogger for the last few years on my fight against this disease, I have found that I need to "disappear" from the scene for a bit. For the last couple of years I have been knee-deep in hospital visits and doctor's appointments. Now that I am stable for the time being, I have the first opportunity to take control of my life again. So that's what I would like to do... if only for a little while.

I have regular checkups this winter with my doctors, and we should find out that my body is slowly repairing all of the damage done over the last few years. And, with a little luck, I will still show a complete response in August.

Regarding the blog, I am not sure what my plans are at this point. There have been thoughts of starting a more comprehensive amyloidosis support site. Some have even suggested I write a book about my experiences. But for now, I would like to lay low for the next few months while I decide what to do.

Please keep me in your bookmarks and check in from time to time.

Team Tony Lives On

It's been nearly 6 months since I've said anything about our Amyloidosis Awareness Folding@Home team. Thanks to the help of a number of anonymous users, our team is still ranked around 450th place (out of nearly 100,000), and we have scored over 2.2 million points.

I must admit that I have not been contributing recently. However, that has changed, now that I have a new quad-core Pentium box that has nothing else better to do!

Folding@Home is a program which uses the "idle" cycles of your computer (and Playstation 3!) to compute simulations of protein-folding, which is leading to cures for many protein-folding disorders (which amyloidosis is a part of). If you leave your computer on all the time, it is an easy way to show your support for amyloidosis awareness, and make a difference. The simulations that the scientists are running at Stanford are quite complex, and we need as people as we can to contribute.

Download the client, then check out the Team Tony website for more information on setting it up.

November Update

It's 15 months past my second transplant, and 28 months past my first transplant. It's hard to believe that so much time has passed. My body is still dealing with the fallout from both of these treatments. The side effects of high-dose chemotherapy are slight, but real.

I'm sure you've realized that the updates to the blog have been getting leaner and leaner as the months roll by. This is for two reasons. First, there hasn't been much to talk about. My condition is 'stable' for the time being, and most of the physical issues related to disease are calming down. My edema is a little better, and when I 'cheat' on my low-sodium diet, I'm able to tolerate it better than I had in the past. I'm still on the water pills and ACE inhibitors, which I take on an 'as needed' basis. Usually this works out to be every other day. I'm still on the Crestor and Niaspan, and if my cardiologist has his way, I'll be on it for quite some time.

Second, I have been a little more active with my work, so my opportunities to sit down and writing an entry into the blog are becoming more rare. I put all of my energy in doing my work, which leaves little left at the end of the day. I am able to manage better, but my focus is still on getting through each day in one piece! Thankfully, I am now able to put in a full day of work -- something I couldn't have said six months ago.

---

November brings two followup appointments: one with my kidney doctor, and one with the cardiologist. I do labs at the beginning of next week. Hopefully I will continue to get good news from both of them, although I expect that any progress that I've made will be incredibly small. It really looks like that it will literally take years to bring myself physically (and mentally) back to the level that I was before I got sick.

--

Just a reminder that the Boston Amyloidosis Support Group meeting will be
taking place at Boston Medical on November 17. If you are interested, please check out my post below for more information.

More Health Insurance Links

Nothing to report over the last two weeks. Things have been more or less stable.

Over at the Consumerist, I came across the following health insurance links that may be useful to some people:

• 6 Things To Know Before Getting Angry With Your Health Plan
• Health Insurance Brokers Can Help You Avoid Getting Rejected For Having Been Rejected
• Sample Letter For Appealing An Insurance Claim Denied For A Specific Procedure
• Sample Letter For Appealing Claims Denial Based On Out Of Network Benefits
• HOW TO: Appeal Denial of Care
• Find Your State Insurance Commissioner

Prescriptions

While the last 30 months have been marked with a series of highs and lows in my recovery, one thing has remained constant -- my frequent visits to the drug store to fill my prescriptions. I have been on a steady steam of medication since I popped my first water pill in March 2005. It has been largely a pain to keep track of them all through the years, and I've collected enough bottles of medicine to run my own pharmacy.

But seriously, medicine expenses during and after your treatment can make you broke... even if you do have health insurance. Some of the drugs the doctors will put you on will not be covered initially by the insurance companies, and those that will may have larger co-pays. I spend over $100 in copays for my prescriptions (although that seems to be going down as I get off some of the medications).

There are ways that one can save on medication costs. First, always ask the doctor if there's a generic version of the drug you are prescribed. Although brand name drugs are said to be more effective than generics, there is no conclusive evidence of this claim. You can check out Consumer Reports' Best Buy Drugs website to determine which medicines are best for you. Also, you might be able to save on drug costs by asking your doctor for a 90 or 120-day prescription instead of a 30-day prescription. For example, instead of getting a 30-day prescription of 20mg of Drug X, ask the doctor for a 40mg or 80mg prescription, and cut the pills.

So there's a few ways you can manage all of your prescriptions. Also, having a good filing system helps as well!

-Tony