In 2008, we will celebrate 15 years together. Our annual Holiday Cards embrace diversity with a multi-cultural/multi-faith inclusive, secular and atheist-friendly message. You can see past cards on our website. Up until a few years ago, we also wished “Remarkable Ramadan” but because of a quirk of the Islamic calendar, Ramadan migrates through the seasons (this year it was Sept. 13 to Oct 12), so this year’s omission is one of timing, not because we aren’t inclusive of Islamic faith.

In many ways Vinny is more active and happy than he’s been in years. He’s still living with AIDS and end-stage liver disease from hepatitis B. He is also now diagnosed with narcolepsy; like the tin man, he can get stuck mid-action. Back in July, he was hospitalized with aspiration pneumonia from falling asleep while drinking water.

In 2008, Mark will have been HIV-positive for 25 years. He’s positively not dead yet either (wink). But this last year has been a difficult one. His HIV disease is still well managed, but as we wrote last year, in October 2006, Mark was also diagnosed with hepatitis C genotype 1a/1b and polycythemia. Thanks to speedy diagnosis and an aggressive 48-week Ribavirin/Pegasys (alpha interferon) treatment, Mark will be one of the lucky few who become actually cured of hepatitis C by the time you read this. The next step is unknown; how quickly will he recover from the toxic consequences from treatment and to what level of function will he rebound to?

Thursday, January 18, 2001

Last week, Vinny's oral surgery was rather more extensive than we had expected -- eight teeth extracted rather than just the two we had expected -- but it went off without a hitch and had fewer complications than we had feared. Vinny now has an upper denture and is looking more hansom than ever And although that whole process was unpleasant, the previous masterful dental illusion was no longer maintainable. In the long run it will prevent the on-going minor oral infections that might otherwise become a serious problem with the anti-rejection drugs required for the liver transplant.

Today, Vinny had a follow-up appointment with the transplant team as well as a first meeting with the actual transplant surgeon. Mostly it was pretty routine stuff and review of information we already knew -- but the surgeon *WAS* quite encouraging that Vinny was in quite GOOD health, and that we may well be able to put off the transplant for quite some time -- *IF* the CT Scans continue to show that the liver tumors remain under control.

As we've said before, the results of the CT Scan are particularly important, for as long as the liver tumors are at least stable, it buys more time for everything else. If they SHRINK, that's even better. If they get bigger, then the time table moves up. The latest blood tests indicate that these tumors probably are NOT growing -- and there's even a possibility that the tumors are NOT actually liver cancer but non-regenerative cirrhosis nodules -- although that's not common given Vinny's chronic hepatitis B and cirrhosis -- but we can hope they are.

Tomorrow (Friday, 1/19) at 5 PM, Vinny goes in for the follow-up CT Scan -- so we know for sure -- and again Vinny and I, and we'd like to particularly ask for your prayers and good wishes, now more than ever.

Wednesday, December 20, 2000

In the last month, both Vinny and our country have gone through a difficult time.

Vinny's diagnosis of liver cancer took a little getting used to. It still does. It's certainly NOT as bad news as it could be -- but it IS one more obstacle to surmount. Vinny also has just gotten cleared to have some substantial oral surgery done in January (it can't wait) -- so there are problems on two fronts -- but we're really looking forward to spending quality time over the extended Christmas Weekend with our families and dear friends -- which is really important to us, especially THIS year.

Vinny is looking better than he's looked in months -- all the rest, good food, gym time, and spiritual renewal is working very well for him. Thank you all for your love, prayers, and e-mails. They've really helped BOTH of us!

Also on the plus side, because of our sale of my marketing company (Metamorphics Media to Mal Dunn) we now can continue our health benefits (COBRA) with far MORE benefits and at LESS cost, then we were able to do before the sale -- how often do things like that workout? We've finally gotten our insurance company to approve and schedule Vinny's psychiatric evaluation for February 6 -- which is about eight weeks later than we would have liked, but it's the earliest we could get. Once that evaluation is written up (late February), then VINNY'S case can be put before the transplant recipient review board, and ONLY THEN AFTER VINNY IS APPROVED may Gregory begin HIS whole evaluation to ensure that there is no hidden medical condition that could prevent him from being a good donor candidate. Given this updated timetable, we're not sure WHEN all this will happen.

Boy, I never cease to be amazed at just how difficult it is to navigate the HIV/Transplant process -- which I guess is why there have only been something like 15 of them actually done up until now in the USA .

Thursday, October 26, 2000

A little over two months ago, Vinny’s liver specialist suggested that his condition had progressed to the point where we should evaluate the possibility of a liver transplant.

Although liver transplants have been performed successfully since 1967, they remain the most difficult of the organ transplants. Because of huge expense, effort, and the extremely limited supply of donor organs, there is a extremely involved evaluation and prioritization process. The goal is to screen out those who do not yet require such a risky and dramatic procedure, prioritize those most in need, and to reject those who are not likely to successfully recover from the process.

Up until last year, people with HIV/AIDS were not even considered as organ transplant recipients. It was feared that the strong anti-rejection medications could devastate the already suppressed immune system (it proved not to effect the same systems) and that people with AIDS would have less then five years to live even with a transplant, so the enormous effort couldn't be justified. With the new AIDS medications, this also proved to be not true.

But HIV/AIDS certainly does complicate the process.

In today’s world of “managed care” the first hurdle we had to cross was to get our health insurance company to authorize the astronomical cost of the transplant evaluation process. Because we have HMO-style insurance, they naturally wanted this done “in the network” of contracted doctors and facilities. However, only a handful of hospitals and doctors are working with people with HIV (only one hospital in the greater New York City area), and as luck would have it, none of these are in our insurance company’s “network.”

Tuesday, October 24, 2000

Tremendous advances have been made over the last two decades in the treatment of HIV/AIDS. For those of us who are lucky enough to have great private health insurance plans, we can afford the obscenely expensive "cocktails" of the latest wonder drugs.

We've been lucky, and these have been VERY effective for Vinny. We have won the battle, and for a number of years now, we've beaten back the HIV virus to the point where there is so little HIV virus detectable in the blood that he's said to have "zero viral load for HIV."

But at what cost?

All of these drugs, to some degree, are metabolized in the liver, and for someone with chronic Hepatitis-B, they speed the progression of his liver disease -- as well as all sorts of other side effects and complications. At this point, Vinny's liver is now mostly clogged with scar tissue (cirrhosis). The TIPS Shunt, solves some of the mechanical issues of moving blood, but we are getting to the point where only so much can be done with what Vinny has left.

Vinny may well be able to keep stable for a few years doing the sort of things we're doing, or things could destabilize in some number of months to the point where we'd have to do something more dramatic...

The next step is to look at liver transplantation.

Up until THIS YEAR, Vinny would not have been considered a potential candidate because he is HIV-positive. The traditional thinking had been that people with HIV simply wouldn't live long enough to make the huge effort and expense of a transplant worthwhile. Now that people with HIV are living longer and are being healthier, there are a FEW places where doing organ transplants to people who are HIV-positive.