ICE

Oh yeah... with this heat and high humidity I could use a little ICE. But that's not what I'm taking about here.

One of my "amyloid friends" sent me an e-mail about the ICE program. I won't bore you by repeating what's in the article I just linked, but the Cliff Notes version is that you enter in special contacts in your mobile phone like this: "ICE1", "ICE2", etc. In these contacts, you enter the phone number of people to contact in case of emergency. If you print out the ICE logo (displayed in the right) and stick it on your mobile, then the paramedics will know what to do to contact these people.

Here's the link again, in case you missed the first one :)

In case of emergency - Wikipedia, the free encyclopedia

July Lipid Results

The results are in for this month's lipid labs. I got sizable decreases from the June labs, in both my cholesterol (from 280 to 246) and in my triglycerides (from 152 to 100). Of course, this is not surprising considering the amount of drugs I am taking. My cardiologist is very drug happy, and will not reduce (much less take off) any of the medications that I am taking. He recommends a follow-up in four months. Considering that I pay over $100/month in co-pays on my prescriptions, I am going to ask again at my one-year checkup next month.

This heat and high humidity is doing a number on my system. It's been pushing my blood pressure down to lower the usual levels, making it extremely difficult to get a good night's sleep. To combat the hot weather, I am keeping myself hydrated with Gatorade, and taking Midodrine again on an as-needed basis.

As Long As You Don't Eat Or Drink Anything, You'll Be Okay

Since Amy came into my life, I've had to stick to a very restricted diet. This means "no salt", "no sugar", and no alcohol. Of course, this all equals "no fun". At first I decided to make do with the limited cooking knowledge that I had prior to getting sick, but discovered that everything that I knew how to make really wasn't good for me. Alas, those bachelor days of Ramen Pride, Hamburger Helper and Spaghettio's for dinner are all over.

Over the last year, I read a number of websites and books of nutrition, cooking and on eating healthy. Now that I've digested a ton of information on food and nutrition (digested... get it? yuk yuk) I've come to the conclusion that just about everything out there isn't good for you. Day after day I see studies like this one that blame common staples for a number of different health disorders.

Now how are you supposed to eat anything when you know how bad it is for you?

But seriously -- eating a healthy diet is beneficial to everyone, and not just sick people. However, there are many challenges: learning what to eat, learning how to prepare it, making the time to prepare it, and being able to enjoy what you've made. Not to mention that you are always going to want to dig into a Big Mac every now and then. It's not surprising that we don't eat very well at all.

If someone asked me some tips on food selection and preparation, this are thoughts I would pass on:

• Food is the fuel for your body to keep it working in optimal condition.
  
• People are not built the same -- we each require different types of fuel. You need to learn what is good fuel for your body. This book can help you find out what that might be.
  
• 90% of all items sold in the supermarket today is crap. Most of it will hurt your body if taken over the long-term.
• When shopping in the supermarket, stick to shopping along the edges (dairy, meat, produce) rather than going into the aisles. Generally, the healthier stuff is located on the outside.
• Choose organic meat and produce when possible. Organic food is expensive, but much cheaper than hospital bills over the long term.
• Trust that organic products are better for you, but verify that what you are buying is genuine. This means doing research online and asking questions.
• Use the "grandmother rule": If your grandmother could have made what you are purchasing, it's probably not that bad for you. (No, she couldn't have made Cheetos)
• Cooking, like other trades in life, is a skill that must be learned. The better you are, the more dishes you can make, and you will learn to make healthy meals that actually taste great.

Well, this is probably the most disorganized post I've ever made, but I hope I've made my point. It's really important to eat healthy for a long, healthy life. Learning a little bit about nutrition will go a long way.

Now if you'll excuse me, I've got a hankerin' for some Taco Bell.

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Amy in the NYT

Thanks to Beth for posting that our friend Amy (well, ok, maybe not a friend) got some web-time in the New York Times.

Robert Bass, a 53-year old conductor, performed in Switzerland tonight. What's the big deal? Mr. Bass has amyloidosis and is recovering from a heart transplant in preperation for a stem-cell transplant next month. The article discusses the disease, and how it is often undetected until it is usually too late. In Mr. Bass's case, he was bounced from doctor to doctor until he finally found someone who was familiar with the disease. By this time, his heart was so damaged, he needed a transplant to survive. Unfortunately, this scenario is very common with this disease.

Its stories like this that make me humble and feel guilty when I think about how I gripe about my issues, which are petty in comparison.

Quick Recipes

I'm glad to report that I have recovered from my latest predicament -- On Wednesday I took a day off from all of the medicine, which gave my body the chance to recuperate. That Lasix dosage I took last week must have really thrown my body for a loop. The lesson learned -- check all of your medications to see what their total effects will be on your system.

In other news, I came across an article in the New York Times last week entitled, Summer Express: 101 Simple Meals Ready In 10 Minutes Or Less. This caught my eye, because during treatment and recovery you really don't have the energy or drive to cook. Having quick recipes at your disposal are always useful. Some of these were already in my bag of tricks, but there are many time that I would like to try in the near future. It's amazing how useful a little olive oil and garlic can be in so many dishes.

Mmmmm... reading the recipes is making me hungry. Now I'm in the mood for some goat curry.

No Pressure

I don't know when it began, but I think it all started on Sunday when I was moping about the apartment dwelling at the thought that that I haven't been doing too well with the edema lately. In the past, I would deal with this by taking a relatively high dose of water pills to "wake up" my kidneys to do their job, and call it a wrap. When I do this, I usually feel miserable for the rest of the day, but the higher dosage usually puts me back on track. So naturally, I didn't hesitate to blow the dust off of my 40mg Lasix container, pop the lid and take a pill.

But then something strange happened -- or perhaps, it was better to say something strange didn't happen. I had no response to my overdose than a small ache at the pit of my stomach.

Although I am aware that I need to be careful with the water pills, as they mess with your blood pressure, I forgot to compensate now that I'm still taking an ACE inhibitor, which also drops your blood pressure. My blood pressure is natually low, and it drops like a rock at times, especially while I am sleeping at night. Between the high Lasix dosage, the ACE inhibitor, and general laziness, my blood pressure has been quite low, leaving me with headaches, brain-fogginess, and general malaise. The nights have been awful, as I've been waking up every night as I've been tossing and turning, cutting off circulation in the process.

Today I called in sick, as I couldn't even think straight due to a lack of sleep. I was able to get a bunch of rest today, and of course, no pills until I get the body straightened out. Hopefully I'll be back on track by tomorrow.

But hey, at least I got the edema under control.

Hokey Pokey

The gland thing is back under control. It took 4 days for it to go away, but it eventually petered out. Usually these "episodes" last only a day or two, so I wasn't pleased to see it make an extended visit this time. Since it was gone for two months, maybe it wanted to spend some quality time with me. Of course, we've got no idea what could be causing it, although it could be any number of things: salivary stones, amyloid deposits, or perhaps little gnomes up to no good... who knows.

Everything has been stable. Laying low until my next doctor's appointment in two weeks, and for the yearly rumble in late August. Edema has been acting up a little bit, but that just may be the heat, which generally causes you to retain fluid.

Some of you may be interested in the book, "The Hokey Pokey Is What It's All About", co-written by Adele Britton, an amyloidosis patient and survivor. It's about the true story about two women (Adele and Jennifer) who work together to successfully defeat their own personal challenges. Adele's outlook on life as a result of her illness transformed her outlook on life, and mentors Jennifer, who is stressed out keeping up with "the American dream".

I haven't read the book yet, but the first two chapters are available online for reading. You can learn more about this book here.

Tandem Transplant Press Release

I saw a press release from Boston University Medical Center regarding the success rate of tandem stem-cell transplants (where a second transplant is performed immediately after the first). I'm believe that they are talking about the trial that I participated in. I was the last patient in the trial (#62 of #62). Since I had a complete response at the time of my release, they must have counted me as one of the five.

Here's the link.

The Gland Strikes Back

My plans for a health update last month were foiled when my cardiologist canceled my appointment on the 28th. I was looking forward to getting some new numbers, but since he doubled my Crestor dosage, I guess he wanted to see how that worked before having me come in. You will find that if the doctors aren't too anxious to see you, then it's probably a good thing. Anyway, the new date is July 26th. I don't think that he will take me off of the drugs just yet, but it will be good to see how the cholesterol and triglycerides are faring... especially since I've been known to cheat on the diet every once in a while.

I had an episode with the salivary gland yesterday. If you remember, I had it checked out a couple of months ago, but nothing was found. It's been relatively quiet since May, and I thought that perhaps it was just "one of those things" and it was finally gone for good. Nope. The worst of it was last night, and although the swelling is going down, it still hurts a little bit to chew and swallow.

It's now nearly a month since I started the ACE inhibitor. I have to say that even at the lowest dosage, it has made a significant impact on my edema. It is no longer "bunching" above my knees, which is allowing my body to absorb most of it back overnight. As long as I don't sit all day or eat out, I'm okay. Unfortunately, I find myself doing both on a regular basis!

I think that I am still making progress on the protein leakage, but my feeling is that it is improving at the slowest rate you could imagine. Assuming that everything is under control, it may be a year or two before I am able to eat salty stuff without guilt.