Thursday, November 17, 2005

A Strange Anniversary...

Sitting here typing this out, it seems completely surreal to post these words: It was a year ago today that I learned I needed a liver transplant. ''We're talking about saving your life,'' Dr. Devon John told Nancy and I. In some ways it seems as if it never happened at all - I feel great. In other ways, it seems so anxiously recent and yet, in others, like it was a lifetime ago - which in a way it was.

My celebration of this strange anniversary was particularly sweet in one aspect.

In recent days, I got to address a group of more than a dozen people and their caregivers who have been accepted into the pool of folks awaiting liver transplants at NYU. I never got to participate in a such an orientation program myself - I was totally disoriented before I ever had a chance to get NYU awaiting an organ three weeks after that life-changing meeting with Dr. John. I told Nancy as we headed in that day that we were just ''window-shopping'' and ''kicking the tires'' at our scheduled ''informational'' meeting - but the information awaiting us was that the clock was ticking for me.

''I'm very glad to be here,'' I told the assembled group, gathered by NYU transplant social worker Stefanie Miller. ''Truth is - I'm glad to be anywhere!''

I think it was stunning for me - looking and feeling fit - to be able to tell people that a year ago I didn't even know I needed a transplant and had never set foot in NYU. Now, I'm completely back to normal (OK - 'normal' is relative. Normal for me, that is), back to work, and feeling better than ever.

I told them I was lucky that the timeframe of my ordeal was intense and short, and that I had no pain throughout, just some discomfort from bloating and 'diaper rash,' and occasional hallucinations, or nightmares, as a result of constantly changing dosages of meds. I acknowleged those discomforts, but decided I wasn't going to let them bother me - 'thinking' them into a box, a little closed chamber in my mind were they would be weightlessly locked away for ever. I was busy waiting for a liver, I had no time to deal with diaper rash!

I told them what wonderful care I received from all the nurses - personalities and backgrounds as different as night and day - but all with the same love, respect, caring and professionalism.

I told them how blessed I was to have Nancy and my family and so many friends and neighbors - and strangers - who pitched in - and wished the same for them. I had the easy part - it's the caregivers who have it tough. I recalled how I would always ask Nancy if she had eaten and urge her to go and get something, rather than sit there hungry just to be with me - I wasn't going anywhere without her knowing!

I told them how I constantly think of my wonderful donor and her family and how I try to understand what it must have been like for them to lose her so close to Christmas and still a young woman, at 53.

I told of how I asked my doctors in the days after my successful surgery last Dec. 19 to tell me the one thing I could do that day to help me get better. Some days the answer was just to rest; most days it was to work with the physical therapists, regaining strength through walks around the halls, or sometimes just doing leg lifts in bed.

I told them how I went from 40 pills - requiring two full pill cases - upon my exit from the hospital and how I'm now on just 7 or 8 pills, depending on the day. Clinic visits have been pared down to weekly intervals to one every three months.

They laughed and we seemed to have connected.
The first question - what blood type am I - a crucial issue in determining how long one may be on the dreaded 'list' of folks awaiting transplant - the thing that worried Nancy and I the most - and the biggest threat to a waiting transplant patient's life.

Another asked about any setbacks in recovery; another quizzed me on the living donor route to getting a transplant - just starting down this road, we were derailed when I got too sick to be able to receive just a partial liver.

Most important, several people came up to me afterward saying that I made them feel a whole lot better about the whole situation, that I had calmed their worries. A young man in a Remdawg 2 baseball cap - a true Red Sox fan tributing the ex 2nd-baseman and current announcer Jerry Remy - was especially thankful. A Lutheran minister and his wife from upstate New York was gracious and said he took inspiration from his congregation. Each week at services, they size him up, telling him he looks good, when he does and offering advice about when he should visit docs again, because he's showing signs of swelling. He said he's greatly comforted in knowing that when the call comes from a transplant - his flock will be there for him.

My overall message - life is 10% what happens to you - 90% how you deal with it...

a prayer for all of us as we deal with all that life deals us each day...

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.