Tuesday, November 08, 2005

Getting Better...And Smarter

Hi Folks -

Well, after all these months, I've finally gotten smart.
This time, I waited until AFTER my check up with the NYU Transplant docs before reordering my meds. And it paid off.
Usually, I reorder and then find I no longer need what I just got.
In a passable imitation of the boss, Dr. Lewis Teperman, Dr. Thomas Diflo, slashed my daily meds by more than half. Usually, it's Dr. Teperman, who suddenly appears at the end of clinic check ups and trims down dosages in a flash of his pen, the way Zorro cuts down bad guys with his sword.
Here's the count - I'm down to just three meds - now Prograf, Prednisone and Septra -with smaller dosages of the last two.
No more 10 AM, 2 PM or 6 PM meds - just 8 in the morning and 8 at night - no more than 9 pills total on any given day. Nexiums will be kept in reserve in case of a return trip to the epicurian exotica of Edison, NJ.
That's an unbelievably far cry from my dismissal dosages when I took full ownership on my new Mercedes (scar) upon leaving the hospital last Dec 30.
I had a med sked that went on for two full pages - tracking how to take 14 different prescriptions - a total of near 40 pills - ingested from 8 AM to 10 PM. Now my requirements could pretty much fit on the inside of my green Donate Life/Done Vida rubber bracelet, or on the back of my quarter-sized MedicAlert medallion.
The small trade off is I have to have my blood tested more frequently than once a month to ensure that levels keep looking great.
I feel great - and it boggles the mind that it was exactly a year ago today that I had my transjugular liver biopsy at Beth Israel in New York City which put me on the path to my life-saving transplant.
A year ago at this time, I didn't the extent of my illness wasn't known - and - because we didn't know I needed a transplant, this blog or website didn't even exist and I hadn't yet met any one of the wonderful people at NYU that are such an important part of my life now.
Last year, wacky, high readings from my blood tests - including a very high bilirubin level - indicative of my severe Homer Simpson-like jaundicing - lead to my hospitalization. Now, they tell me, my bilirubin count barely registers.
Dr. Diflo, a jamming guitar fan, who performed my transplant surgery to a great soundtrack - which I still hope to download onto my new I-Pod - advised that after attending the Cream concert recently, at least one of the aging rockers appears to be either suffering from ascites - or is just getting fat.
The talk went from meds to music to mice as we sought advice on what potential pets could safely cohabitate we us, given my immune suppressed state. Alex and Tasha both want to their own critters for Christmas - Tasha's fish fixation is clearly benign. But Dr. Diflo, sounding like a veterinarian now, ran through the various Hanta viruses and such that can effect various rodentia that topped Alex's wishlist. Nancy had already ix-nayed the ite-whay ous-may and the any at-rays, and erret-fays (Alex may read this - but isn't fluent in Pig Latin, we hope). Smart money is on a salamander...
Dr. Devon John told me that oil prices did exactly what I told him they would do when we last talked in August. Like I always say - don't tell me, tell my boss!
Hopefully, he made lots of money...
I've very glad to say that Stefanie Miller of NYU has asked me to speak at an upcoming orientation for new transplant patients. In my case, things went so fast, I was totally disoriented before I had a chance to get oriented - or orientated - or whatever. But it's very important to me - an honor, duty, responsibility and desire - to help others that are in a similar situation than I was. With all the attendant anxiety of looking for a potential living donor, I will never forget the out-of-the-blue phone call I received from a local woman who told me that it had been years since her liver transplant and her life was better than ever.
I can truly say the same.
In the evening following Monday's trip to NYU, Nancy and I went to Alex's school for teachers meetings. There, in the hall, for the first time since last December - I ran into the father of one of Alex's school mates who has on the ambulance crew that helped save my life. I'll never forget our conversations about our kids - in the back of that ambulance - like two guys on barstools yakking away...We hugged and it was an amazing moment.
Now, I've got this watch that beeps 5 times a day for my meds - but I've got more beeps that I don't have to give the Pavlovian response to than I have that require action.
Since it's too hard to reprogram, I'm going to take more opportunities in the day to thank my donor and her family, my doctors and my all answered prayers - and pray for those facing similar situations.


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