Monday, August 22, 2005

Eight Months On, Still Saying 'Thank You'

Hi Folks -

It was only fitting that just after hitting the eight-month mark with Dora, my new liver - the fabulous gift of life from my donor family - that I would find myself again thanking so many people - many strangers to me - for their support and prayers during this past crazy year.

I gladly went along with Nancy to her 25-year high school reunion in Pennsylvania to have the chance to hand out hugs and share some joy - big time.

Of course, we knew we'd see Charlene (The Golfing Queen). With her heart of gold, she's a rock of inspiration and determination. I laugh just thinking about Char, she's that type of person. She was amazing in all that she did for Nancy in helping her watch Alex and Tasha, while I was laid up at NYU. And it was so right that Char was there with Nancy and the kids on the morning when I was able to make ''the call we'd been waiting for,'' telling Nancy on Dec. 19 that they had a liver for me and I'd soon be off to surgery. (And that my wedding ring - removed for the first time since it was put on in 1991 - was around the paw of Alex's stuffed dog 'Courage' - who was visiting with me in the hospital and was - temporarily - hidden away in a cabinet drawer). Char is 1 in a billion and we can't tell her that enough!
We love you!
I was deeply moved by all of Nancy's friends - many out of touch for years until my crisis hit, word spread on the website and emails and prayers poured in. They were so truly happy for us. The prayers worked, indeed they did. One woman told how her 12-year-old son saw her looking at the website - and my yellow-eyed photo (yes, we will update soon, I promise!) - and asked about what was happening. From that point on, she said, the boy included me in his nighttime, kneeling by the bedside prayers (like I know so many of you did, in your own ways). It doesn't get any better than that. She snapped a picture to show him (stranger to stranger) how I look now, fully recovered. Another classmate, battling breast cancer, shared hugs and told how she prayed for us. It's beyond the power of words to relate.
Never, never forget how many good people there are in this world...

A clarification from the last blog posting regarding directed donations.
They are not against the rules, as I incorrectly stated. They are allowed and are generally only done within families, and attempting to influence directed donations runs afoul of the way the organ procurement system is designed. The issue came to the forefront recently when friends of a New York woman - who desperately needed a liver - posted flyers in hospitals and employed other questionable practices in an attempt to secure a directed donation for their friend. (In a directed donation, a deceased person's organs can be assigned to a specific person - again usually family, or family equivalent - i.e. life partner). This issue will be hotly debated within the organ donation/procurement community. The bottom line here is that the woman in question got her life-saving transplant at NYU, through the established working system, without any favoritism or special treatment, despite a broad publicity campaign.

Viewers of the HBO black comedy ''Six Feet Under,'' which focuses on the lives of the Fisher family who own a funeral home, may have been jarred - understandably, as we were - when a character who died was shown in the mortuary with a body-length scar and eyes removed. The character - appropriate to his strong social conscience - was an organ donor. An important point to remember here: the body on the show was at the early stages of being prepared for burial. As we noted in commenting on a New York Times article about organ donation in recent months - being an organ donor doesn't preclude a traditional, open casket viewing.

Now that my 2 PM alarm beeps - and I don't have to stop and take meds - I take a few seconds out instead to say thanks for my life (for the umpteenth time in a day). Why don't you all join me and we'll all think of someone we are eternally grateful for. I'm sure we could stir up the angels and really get something good going!

Tuesday, August 09, 2005

Two Great Gifts - Part Deux

Hi Folks -

Back in April, I titled an entry to the Blog ''Two Great Gifts.'' It told the tale of getting a great check-up at the NYU Transplant clinic, and, more importantly, unexpectedly seeing a fellow ward mate who was recovering nicely.

Monday's visit was a repeat in a way - Two Great Gifts - Part Deux.

A staff member at the clinic passed us a print out from the website of the friends of Shari Kurzrok announcing that she had gotten her liver transplant on Saturday night. Shari's story hit home. Like me, she was healthy and then was suddenly striken with liver disease from an unknown source. Her condition was far worse far sooner and desperately needed a transplant. I learned of her situation while reaching The New York Times on the train on my first day back to work - nearly a year to the day from when my hepatitis hit. A snapshot of Shari smiled off the page in a large ad titled ''Please help me save my fiancee.'' Robby, who signed the ad, said their wedding was scheduled for Oct. 15 and noted ''I will do anything to save her.''

My immediate thought was that I hoped this woman was at NYU, and after a little Googling, I found that she was. I sent a message of encouragement to the web address on the ad, advising she was in the best possible hands - I'm a living testament to that - and saying that I would keep her in my prayers and spread the word. I received a nice note back quickly thanking me for the encouraging words. (I can hear Nancy saying now: ''Never hesitate to do a good deed!'')

Shari's situation stirred a bit of controversy. She works in the ad industry - and her friends and supporters did what they do best and launched a campaign on her behalf. When Nancy and I first learned that I needed a new liver, last November, we launched the SaveDavid website, a broad campaign and this blog, looking for someone who - out of the kindness of their heart - would offer half their liver (after passing rigorous medical testing) to save my life. The issue became moot when I got so sick that a partial liver from a living donor wouldn't be sufficient.

Shari's friends made a splash in the media, highlighting her amazing charitable work, which included running what was said to be the nation's largest-ever blood drive. There were concerns within the professional transplant community - and some allegations - that people on Shari's behalf may be trying to solicit ''directed donation'' of the liver of someone about to pass away. That's completely against the operating practices of the transplant guidelines which guarantee that the supreme criteria is that any organ goes to the neediest person based on a medical condition in the region where the organ comes available.

The tone of the discussion switched. Now Shari's friends posted on the website an ingenous and wonderful invitation for all friends and supporters to donate much needed blood as a way of doing something helpful on behalf of Shari and others. They posted links and information about how to become an organ donor and detailed the critical need.

Then came the great news - this much-loved 31-year-old woman got her liver transplant. A later posting to the web made it clear that all of the proper rules were followed - no priority due to celebrity status, etc - and a poignant reminder that such donations are only possible through the amazing gift of life given by folks who sign up to become organ donors and their supportive families.

I was so happy for Shari, I was crying when they called my name at the clinic to go back for my exam.

I saw the boss man - Dr. Lewis Teperman - for the first time in months.
Seems like everytime I see him he's changing my meds - and this was no exception.
Of course, his timing was perfect, but I'm not really complaining, even though I just got a full shipment of replacement meds that morning.

My blood results were ''perfect,'' Dr. Teperman said, and proceded to slash the meds. Now, I've got one fewer Prograf tablet in the evening (7 mg down from 8 mg daily), Prednisone is cut to 7.5 mg daily from 10 mg. The Valcyte has been cut to 1 tablet every other day, from once a day. And - in a welcome birthday gift - as of next month, I don't have to take it at all. He cut out the Ferrous Sulfate, too.
I called those my Ugly Pills - since the brand I get is called FeoTabs, which in Spanglish would be UglyTabs. Now that I'm off the Ugly Pills, the possibilities are endless.

I'm down to 7 meds and a total of 16.5 to 17.5 pills a day down from 8 and 21 - and a far cry from 14 meds and about 40 daily pills at the start of the year. I'm down to a single pill case now instead of the two I needed before. My 2 PM alarm is now unnecessary - but I still the Pavlovian reaction when it sounds. I think it would take three days to reprogram my five-alarm watch (which also can be used to time yacht races), so I'll just keep that mid-afternoon beep as a reminder of how lucky I am - and say a prayer of thanks when it sounds.

Dr. Teperman noted - absolutely correctly, too - that Nancy looks great. I assured him it was a combination of having the 16-ton weight removed from the top of her head - and having me out of the house (finally).

We also established - it wasn't any news to the person who must have spent a long time shaving my belly pre-surgery - that I'm a hairy dude (the top of my head notwithstanding). That said, the combo of hirsuit moi and the above steroids was causing a rash on my ''trunk.'' Nothing painful or itchy and I had noticed an oily feeling on the face - but the lower doses should clear it up.

I'm continuing the exercise each day (3.5 mile walks most days, gym and cycling on the weekends) and feeling strong, healthy and happy to be back to work. I'm shelling out my opinions on the oil market - the lack of a gall bladder being no impediment.

Now, it's back to the blood lab in two weeks, to ensure that things are ticking along smoothly at the lower doses - and, if all goes well - I won't need to return to the transplant clinic until early November - three months from now.

Hopefully, I'll meet Shari there - and I can congratulate her in person on her liver transplant - and her wedding.

Talk about two great gifts!