Ten Months - Milestone Nearly Slips By...
Hi Folks - apologies for not updating sooner, but life has been busy.
Nancy phoned me in the office today to congratulate me on 10 months with Dora, my new liver, and that, honestly, was the first I realized the date. Life has been busy lately. In some fashion, it's a good thing that the months are tripping by with little notice as my recovery continues. On the other hand, it's some what sad to me that I've gotten caught up in other things that such an important time for reflection nearly passed me by. Everyday, I pray for my donor, her family, my doctors, for everyone needing an organ transplant, and for all donors and their families.
Despite days of rain which produced mushrooms the size of saucers on neighboring lawns, I've tried to get out and stick to my exercise pace of 3+ miles in the morning darkness. As autumn takes hold, chilly mornings under a full-moon glow stir even the smallest clutches of pines to give a heady Christmas-tree-in-your-living-room scent. In all these years, that's something I've never noted in the ''wild'' before.
Halloween is nigh and the kids are wound up. Each day, Alex makes new decorations and revises costume ideas - Zorro has morphed into Dracula. Tasha has taken to carrying around (and wanting to bathe with) a joke rubber chicken that she begged Nancy to buy. She'll be Pretty Miss Kitty for Trick or Treat, possibly without whiskers, though. Alex is reading everything he can get his hands on and Tasha is learning a letter a week in pre-school, complete with instructional song.
Some very rough news, indeed recently. The 49-year-old childrens librarian in our town, ''Miss Debbie,'' suffered a stroke and died. She left a husband, teen-aged daughter and two young men in college. ''Miss Debbie'' led story time and other activities at the library and the kids loved her. While teachers come and go, Miss Debbie was a constant in their young lives. She new what types of books Alex liked and always tipped him off to new arrivals - and her recommendations were always on the mark. I had the opportunity to get to know her this summer when taking Tasha to the library during my recovery.
Nancy had consulted her about what books would be appropriate for the kids to familiarize them with my situation during my extended hospital stay. Unfortunately, there wasn't a real good fit. Nancy and I agreed that Miss Debbie would know exactly the right book to help get through the current sadness.
Our thoughts and prayers are with her family and friends.
We're happy to pray for the recovery of my brother-in-law Jim K. in Pa. after heart surgery - you can't keep a good man down! And proud that amiga Tabitha made a splash this Sunday in the New York Times magazine - good publicity for her band, Joy Zipper - big in England and named for her Mom.
On the subject of liver transplants, so upsetting news recently.
New York Times reports that a 28-year-old organ donor from the Bronx, who apparently died in a bicycle accident, suffered from West Nile Virus.
The organ recepients, including a woman who received the man's liver at NYU, have come down with the disease and have been comatose. My man doctor, Lewis Teperman, at NYU was involved in the procedures. Tests for West Nile Virus aren't carried out on donated organs due to lack of time....The sad tale tells me how lucky and blessed I am to have things going so smoothly.
This is only the second known case in the United States of the virus's being transmitted by organ transplant.
Organ donors are not routinely tested for West Nile, though they are screened for a variety of other infections, like H.I.V., hepatitis and Epstein-Barr virus. Doctors say that the available West Nile tests are not sensitive or quick enough to rely on in transplant cases, when time is critical.
West Nile infection is becoming more common in this country, so "we need to develop better tests and go to universal testing of organs" for it, said Dr. Lewis W. Teperman, director of transplantation at New York University, and one of the surgeons in the case. But, he added, "This is such an extremely rare event that we should reassure the community that the organ supply is safe."
The donor was a Bronx man who was declared brain dead on Aug. 26, three days after suffering a serious head injury in what one doctor involved in the case said was a bicycle accident. On Aug. 28, his liver, kidneys and one lung were transplanted into four patients - three in Manhattan hospitals and one, a New Yorker, in Pittsburgh.
Three of the patients later tested positive for West Nile infection. Two developed encephalitis, a potentially fatal brain inflammation, slipped into comas in mid-September, and remain in that state, listed in critical condition. The case is described in a paper posted yesterday on the Web site of Morbidity and Mortality Weekly Report, a publication of the federal Centers for Disease Control and Prevention.
West Nile, which is usually transmitted by a mosquito bite, poses little challenge to a robust immune system - most infected people never become ill from it, and most who do get sick have relatively mild flulike symptoms. They fight off the infection and gain lifetime immunity to the virus.
But in people whose immune systems are weakened by age, disease or drugs, West Nile can infiltrate the nervous system and the brain, causing encephalitis or meningitis. Transplant recipients are not only weak already, they must also take drugs to suppress their immune systems and prevent their bodies from rejecting the new organs.
The Morbidity and Mortality paper cites research estimates that a transplant patient is 40 times as likely as an ordinary person to develop a serious brain disease from West Nile infection.
The only previous documented case of West Nile transmission through donated organs was in Florida, in 2002.
Annie Moore, a spokeswoman for United Network for Organ Sharing, the organization that sets transplant protocols for the whole country, agreed that better West Nile tests are needed.
"The risk of disease transmission will never be zero, but it's very small, and you have to weigh that risk against the risk of life without a transplant," she said.
Part of the problem, she and others in the field say, is that getting test results back can take several hours, even a day, which is often too long to wait in a transplant case. Donated blood, which can keep longer, is routinely tested for West Nile, and the C.D.C. says that more than 300 cases have been caught that way.
The organ donor from the Bronx lived an area where the city has found West Nile in mosquitoes. After the recipients became ill, investigators talked with the donor's wife, who said that he had a fever before the accident.
They also tested the dead man's blood, and the results highlighted some of the problems with West Nile testing. He had antibodies to the virus, but those would have been present whether he was infected 10 days earlier, or 10 years.
Yet he also tested negative for the RNA of the virus itself. Scientists say the virus may have been present in amounts too small to be detected.
"It's also possible that the virus could be in the tissue and not in the blood, in which case our tests would be useless," said Dr. Lloyd Ratner, surgical director of the kidney transplant program at NewYork-Presbyterian/Columbia hospital, who said he was involved in both kidney transplants in this case.
"There's no really great, reliable way to be able to screen for this," he said. "And if you set the bar too high, you rule out using potentially life-saving organs."
Officials gave little information about the Bronx donor or the organ recipients, to safeguard their privacy.
The liver was transplanted into a woman at N.Y.U., and the lung was given to a man in Pittsburgh. About two weeks later, both patients developed fevers, altered mental states, difficulty breathing, paralysis and, after a few days of illness, coma.
The donated kidneys were transplanted at Columbia into a man and a woman. The man has so far tested negative for West Nile, while the woman was infected but has shown no symptoms.
All four patients were treated with an experimental serum developed from the blood of people who have immunity to West Nile.