Miscellaneous

Now that have moved most of the belongings into my new apartment, things are beginning to settle down. These last few weeks have been quite rough on my body, so it's been great to get a respite from the constant moving and unpacking of boxes.

I got a notice in the mail from my nephrologist, who has rescheduled my next scheduled appointment from the middle to the end of May. Since I'm totally in control managing my edema, a delay is not too much of an issue, but I would really like to get another blood test soon to see how my kidneys are doing.

Here's some random news off the wire:

• If you haven't read my news item earlier this month, famous science-fiction writer Robert Jordan was diagnosed with amyloidosis. He is undergoing the high-dose chemotherapy and SCT treatment. Today he is on Day+6, and it is great to see that he has a good sense of humor through all this. You can read his blog here.
• Our friend Lance Carter is showing a great response to his Dexamethzone treatments. I'm glad to see that he's on the up-and-up. Keep on fighting the good fight, Lance.
• Thanks to Lance's wife Lisa for posting the testimony given by Terry Peel to the US House of Representative Subcommittee on Labor, Health & Human Services. It is a plea to have more funding allocated to Amyloidosis Research. He gives a good overview of the disease, and why more attention (and more dollars) needs to be given to finding a cure.
• Team Tony has really started to slow down on production, and its ascent into the elite 500 has temporarily come to a standstill. As of this writing, we are in 613th place. We've crunched over 3000 work units, scored a half-a-million points... Why stop now? If you haven't considered joining Team Tony to contribute to amyloidosis research and awareness, I strongly recommend you check it out.
• The next Amyloidosis Support Group Meeting for New England will be held at Boston Medical Center on May 20th, 2006. The speaker will be Dr. John Berk, one of the directors of the Amyloid Program at BUMC. Here's more information if you're interested.
• A raffle to benefit for Amyloidosis Research is being conducted by the Nassau Wings Motorcycle Club. They are giving away a week at a very nice resort in Arizona. For more information, a flyer in PDF format can be found here.

Well, my fingers are always a little tight in the evenings due to some fluid build up, so that's it for now.

Amyloidosis Funding Appeal in Washington

Making their case on Capitol Hill for disease funding

Dozens of disease research champions come to the subcommittee that Regula, Republican of Navarre, chairs to seek a share of the federal government's $873 billion discretionary budget.

Former Capitol Hill staffer Terry Peel, who has known Regula for decades, came with his wife, Ann, who suffers from a rare disease called amyloidosis in which abnormal protein clots squeeze out normal cells and cause organs to fail. He asked Regula to keep language in his funding bill that encourages wider diagnosis of the disease.

Omacor: 0 for 2

Last week, I resumed the Omacor again, albeit at a half-dose (2mg/day). Even at this dose, I felt lethargic and miserable. As a result, I have stopped the medication again, possibly for good this time. I'm disappointed in this development, as Omacor is supposed to be very effective at reducing tryglycerides.

Last week marked a new milestone in my recovery: I finally left the nest. That's right: I moved into out of my stepparents, and into my own apartment. I had hoped to wait until my edema cleared up enough as not to be a disability, but since it doesn't appear that that will happen anytime soon, I figured that now was as good of a time as ever.

It may seem like a trivial thing, but remember that I really haven't truly had the sole responsibility of caring for myself since I went in for treatment nine months ago. It really takes time to get adjusted to making your own meals, doing your own laundry, and generally taking on the rigors of normal life.

It's been about three weeks since I started the cardio rehab, and I have found a morning schedule that works for me. But between my business trips and moving, I have not been regular about my appointments. I have noticed that when I exercise and get my blood pressure up, I tend to have less problems with the edema. The edema is slightly better this month, although I attribute that to taking Lasix twice a day instead of once a day. Although I've been able to tolerate the Lasix, at the increased dosages I do feel miserable and bitchy most of the time. Well, more than usual! I hope that next month will be much better, although at this point I am not holding my breath.

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Getting Lucky With Lasix

It's now 12 days since I last took the Zaroxalyn, the water pills that were necessary for maintaining my edema to a manageable level. It has been very important that I get off of this drug, as it negatively affects my trigylcerides, and has a serious interaction with Omacor, a new anti-tryglyceride drug that was recently prescribed to me.

To compensate for not taking this drug, I have increased my dosage of the less-powerful Lasix diuretic, and changed my dosage from once-a-day to twice-a-day. So far, things look really good on the Lasix alone. Of course, I am taking awfully high dosages (between 80 - 120mg), but it appears that I am now able to get along without taking the Zaroxalyn.

Because Lasix is a more passive diuretic, I am able to tolerate the higher doses much better than the Zaroxalyn. I have noticed that I feel much better since I'm no longer taking it. As long as I do not take 120mg three times in a row, I don't feel any side effects.

So, now I'll be able to resume the Omacor, but I will try a reduced dosage for the first week (2g / day).

With all the drug interaction issue that I've had during my treatment, I'm so glad to see something work out in my favor, finally.

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Conflict

I have returned from Florida, where I was on a business trip for the last three days. It consisted of a lot of boring conferences, but I'd be lying through my teeth if I said that I didn't enjoy myself. Perhaps it had something to do with the ocean view. Or maybe it was the sunny, 80 degree weather?

I was anxious in going, as I haven't flown since before my illness, and didn't think that my body would take it. I'm also preparing most of my meals, so not being able to do that might have caused problems with the edema.

The result? I did come back with more fluid than when I started, but not as bad as I had feared. To be fair, I did do a bit of laying down by the beach, so that may have helped things along. I think that I can do trips now, however, I don't think I can do extended stays -- yet.

There's been a significant update in my water pill prescriptions. As you know, I had experienced some problems while taking the Omacor last week. I had stopped that medication for a bit until I came up with a better plan. While doing some research on the Internet, I discovered that this drug causes an interaction with thiazide diuretics, especially with people who are hypotensive (like me). This would explain the miserable, flu-like symptoms I experienced. Zaroxalyn, the strong water-pill that I have been using to keep my edema in check, is a thiazide diuretic. Oh oh. But wait... there's more. In addition, I learned that thiazide diuretics increase triglycerides, which I really don't want.

What did I learn from this? I need to stop taking the Zaroxalyn.

This leaves me in a conundrum, as I have not been able to control the edema on the Lasix alone. It's been a week since I last took it, and my weight has slowly began to creep up. To compensate, I am now taking 100mg of Lasix in the morning, and 100mg in the afternoon. It is too soon to tell whether this will work. I am currently in conversation with my nephrologist to see if there is another class of diuretics that I can take. But none are as powerful as the thiazide diuretics, so I am skeptical whether this will help.

The lesson from all this? Do your own research on any medications that your doctor places you on. Especially if you have any specific conditions which would cause problems. For example, many drugs have a nice side-effect of lowering your blood pressure, but this could be a problem if you already have low blood pressure (like me). And make sure your doctor is aware of any medications other doctors have you taking!

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Trips

Now that I am back to work full-time, I'm starting to do business trips. I've been hesistant to do any long-term traveling in all, as I still do not have the edema in my legs under total control. One bad day, and my entire week could be thrown off. So when I go, I am very careful, and try to make sure I don't eat things high in sodium. Just one slice of pizza can stop my water pills from working. Essentially I eat fruit and salads, which is healthy -- but I swear I'm starting to turn into a rabbit.

To help combat the edema during the trips, I've purchased a couple pairs of Futuro T.E.D. anti-embolism stockings. Unlike the other stockings I got earlier in the year, the Futuros are closed toe and come in different colors. Because of their modified fabric, they feel more of a sock than a stocking, and at a glance, a black one could pass as a dress sock. They are also more comfortable.

Off to finish packing. I'm flying to Ft. Lauderdale for a vendor conference later today.

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