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 orientated...in 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...