Lance

Some of you are familiar with our friend Lance Carter, who has been battling with amyloidosis and multiple myeloma for the last two years. Tonight, his wife Lisa reports that he has taken a turn for the worse.

Please stop by their site and give them some good vibes and prayers.

Life at 33 RPM

Another slow, eventless month done and over with. Based on my sophisticated calculations, I am now into my third month or recovery. At this point, I was hoping to be up to full strength, running five miles and sporting a full-set of hair like a chia pet, but alas, that was not meant to be. As a matter of fact, I really haven't had any increase of stamina in the last few weeks. And come to think of it, not much change on the top of my head either.

Can you believe I'm still trying to determine my proper dosage of water pills? I know that I definitely require less medication than this time last month, but I'm discovering that I am far from ready to get off the pills completely, which is my goal. Of course, I'm still taking quite a bit of a dose -- about 40mg of Lasix once a day -- but this is much less than the dosage before my second treatment, which was 80mg twice a day.

Other than that, nothing new that to report. That's how it goes. I'll be watching my scalp for hair growth, and promise you'll be the first to know. (Well, second to know... you know what I mean.)

The Little Kidneys That Could

Bleech! It is sure damp and cold outside this morning. I feel that I'll catch something just by looking outside the window too long. When you add to the mix that almost everyone I know is either a) sick or b) in the process of getting sick, it doesn't inspire confidence to leave the apartment.

And ugh, my refrigerator is getting empty. This is disturbing, for you can imagine the energy and wits necessary for me to go to the supermarket. You see, it's loaded with... sick people! Yeah, you know, they are so many of them. They are sneezing and coughing all other the place. It's like you need to have the strategic intelligence of a four-star general to plan your route in between the aisles, obtaining the items on your shopping list... and while avoiding these walking virus factories who are lurking behind every endcap.

Well, the kidney pain has subsided, and I'm still trying to determine exactly now much better my kidneys are functioning. Like I wrote last week, I went cold turkey on the water pills for two days, and I seemed to do okay, although I did gain some fluid. I'm in the process of determining my new dosage right now. There is some improvement, although I don't believe it's as significant as the improvement I had last month.

Patient's Day Reminder

Just a reminder to all amyloidosis patients and caregivers in the area -- there will be a Patient's Day at the Boston University School of Medicine on Saturday, November 4th. Already 100 patients have signed up to meet and great some of the most prominent doctors who are treating this disease. It's also a great way to meet and learn from others, especially on how to deal with some of the symptoms of the disease, such as nephrotic syndrome and neuropathy. Assuming my body is up to the task -- I plan on being there.

I've felt pretty good during the last few days -- save for a dull pain in my right kidney. (My left kidney never acts up -- it's always the right one.) I've also been a little drained and light-headed, which usually means that I am taking too many water pills. This is wierd, since I've been taking the same dose for weeks. Perhaps my kidneys are improving again? I'm cautiously optimistic. I'll know for sure in a couple of days, as I re-regulate my dosages.

Site Maintenance

I've gotten a number of e-mails from people mentioning that they can no longer access this website. It seems that Blogger, the owner of my blogging service, has been doing a lot of maintenance at odd hours through the last few weeks. If you are having difficulty accessing the website, try again in a few hours, and you should be able to get in.

I realize that this advice sounds akin to the phone company telling you to call them if you are having problems with your phone service, but I've noticed the downtime as well, and wanted to let everyone know that everything will be alright.

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Also, I've decided to move my contact e-mail from Yahoo! to Google's gmail service. You can find my updated contact information through the Contact Tony link in the right column.

Day + 51, Ailment Du Jour

I am moving inexorably towards the end of my second month, with nothing to show for it but a string of random ailments that come and go. For the majority of last week, I was extremely fatigued, and while we had a good string of beautiful days, I was only able to enjoy them from the comfort of my living room couch. I may be a little paranoid, but I swear my right thumb is a little swollen from constantly pressing the buttons on my TV remote.

At the end of the week, the fatigue eventually went away... only to be replaced by stomach pain from a bad combination of fried eggs and a Starbucks coffee for breakfast. This left me in an uncomfortable mess most of yesterday.

Today, I woke up with some lower back (kidney?) pain, which forced me to curtail my morning walk. I've taken some Tylenol to get some respite from the dull ache in my lower back-side, and I'm hoping it doesn't put a damper on what looks like to be another sunny and pleasant day.

But don't confuse my emoting for worry -- this is exactly how the healing process unfurled during my last transplant. I expect a lot of sleepy, achy days in my near future. I know that they will continue to pester me, until one day they will suddenly go away. Until then, it's back to the couch for some more channel surfing.

Day + 46: Turbulence

Now that I've passed through most of the roughest seas with my recovery, the battle and challenges that I've had to face on a daily basis are starting to change.

One of things I need to deal with is the little 'hiccups' that occur in your healing progress. As the immune system begins to heal, it tends to have little fits, which manifest in random aches and pains, or perhaps a small fever. Last week was an eye infection; right now I'm dealing with a tiny sore throat, which no doubt is one of these aforementioned fits. To add to my stress level, I'm doubly paranoid on picking up one of the colds that seems to be going around. That's the last thing I need to deal with at this point.

Maybe a bigger issue is mentally realigning oneself into getting back into an active life. After weeks of constant naps due to not feeling well, it really takes a lot of effort to get back into the swing of things and be active. Perhaps my second time will not be so hard as my first, but the push to motivate oneself to getting off one's butt and doing something productive is just as real. My goal is to cut the naps and be active throughout the day by the end of the month. It seems like I'm babying myself here, but when you consider that at this time in my last treatment I has just been released from the hospital, I don't feel so bad.

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For those who haven't been keeping track, our friend Philip has officially started his treatment this week. Be sure to stop by and give him your words of encouragement!

Day + 40: Home Alone

For the last two months, my mother had been staying with me here in Boston to serve as my caregiver for my second transplant. When we first discussed her coming down, we hadn't decided on how long she would stay down her to take care of me. Recovery from such a procedure is slow and uncertain. However, I knew that she wasn't able to get much time off from work, so it would be in her best interests to go back as soon as possible. My plan was to do as I had done last year during the first transplant -- go back with her to New York for a short period to finish my major recovery, then return back to Boston when I was ready to be on my own. We decided that the beginning of October would be a good time for her to return to New York, (and of course, with me in tow).

Last week I made the decision not to go back home to New York with my mother. This wasn't decided on a flip of a coin; there were a couple of good reasons why I thought this was the right thing to do. First, I have an apartment here in Boston -- I couldn't stand to pay rent for a place I wasn't living in. Second, my recovery has still just begun. I am only on Day+40, and there's a long way for my body (and hair!) to go. Should I get an infection or other ailment that requires medical attention, it would be best to stay near Boston Medical Center. Besides, it was about this time last year that I almost got a case of shingles. Finally, I want to push myself into being able to manage by myself. One of horrible things about laying on your ass for a couple of months straight is that it takes the same amount of time to get physically active again. I had a major problem with this last year, and I'd like to avoid it this time.

So, Mom's gone and I'm home alone. So far it's been manageable, but I am amazed at how tired I get from doing something as menial as making dinner.