opposites attract

Well, I got my official letter in the mail regarding my compatability with Jeanne for a transplant. Here's the results:

Blood type:

AB

Antigen matching:

You and your recipient have a 0 out of 6 match

Crossmatch:

You and your recipient have a positive crossmatch

In summary, there is nobody on the planet who is a less suitable match with Jeanne for a kidney transplant than I am.

As I sit and reflect on this, though, I'm thinking this may actually be good news. I knew going in that I couldn't donate a kidney to Jeanne because of our blood type mismatch. If we were compatable with respect to antigens and crossmatch, then maybe the pair of people we would match up well with would also match up well with each other, and therefore the other pair would have no need to get involved in any sort of kidney swap.

In any case, the next step for me is to get back in touch with the NYP Weill-Cornell transplant team and start the process of getting myself into the Donor Swap program.

an open letter

Dear friends, family, neighbors, kindhearted strangers,

My wife Jeanne was diagnosed with Autosominal Dominant Polycystic Kidney Disease in 1992, soon after we were married. Polycystic Kidney Disease (PKD) is a genetic disorder which affects an estimated 1 in 500 people worldwide. The presence of the PKD gene causes cysts to grow on the kidneys, which over time reduce the kidney’s ability to remove waste and toxins from the body. There is no cure, and currently no accepted treatments to slow the progression of the disease. Kidney failure occurs in approximately 50% of patients who have PKD.

Once kidney failure occurs, the only treatment options are dialysis and transplant. Dialysis is a process whereby the patient is hooked up to what is essentially an artificial kidney machine. Typically the process lasts for three hours and is performed three times a week, most often in a special dialysis center. Transplantation involves taking a kidney from another person, either deceased or living, and placing it into the patient’s body. For Jeanne, her kidney failure occurred fairly early in life – when she was only 31 years old. Jeanne was fortunate enough to receive a transplanted kidney, donated to her by her Aunt Susie in May of 1998.

Jeanne’s kidney transplant was a life-changing experience for her. It vastly improved her health and literally gave her new life, despite the many medications she needs to take to allow her body to accept the new kidney as her own. That’s the good news. The bad news is that a kidney transplant is not a cure for kidney disease – only a treatment. Transplanted kidneys can only last so long in a foreign body. In fact, the very drugs that are required to be taken to allow the body to prevent the new kidney from being rejected have an adverse affect on the kidney itself.

So, here we are 11 ½ years after the transplant, and the time has come where Jeanne’s “extra kidney” is no longer able to do its job very well. Jeanne’s creatinine levels (which are used to measure the effectiveness of the kidneys) are rising and it is time to face the reality of approaching kidney failure yet again. Jeanne has gone through the initial process of transplant evaluation and, as of September 30th, she has been placed on the waiting list for a deceased donor kidney. The amount of time one has to wait for a deceased donor kidney is highly variable, as it takes into account many factors, but the reality is that there are far more people in need of kidneys than there are kidneys available for those people. Given that Jeanne is blood type O, we are being told that the expected wait time to receive a deceased donor kidney is likely around seven years.

Living kidney donation is another option, as the large majority of us are able to live full healthy lives with only a single kidney, despite the fact that we have two in our bodies. Jeanne’s first kidney transplant was a living kidney donation from her Aunt Susie. In a living kidney donation, a person agrees to donate one of their two kidneys by having it surgically removed and transplanted into the recipient. In general, living kidney donations have much better success rates than deceased donor kidneys.

The three main requirements for being able to perform a living donor transplant are blood type compatibility, antigen matching and crossmatch compatibility. Blood type compatibility follows the same rules as for blood donation: A can donate to A or AB; B can donate to B or AB; O can donate to everyone; and everyone can donate to AB. Antigens are six markers on cells in our bodies that help our immune system identify foreign cells entering our bodies. The more of these antigens which match between the donor and recipient, the more likely there will be a good outcome of the transplant. And, finally, a blood test is done whereby the blood of the donor and recipient are mixed together to see if the recipients blood reacts against the donors blood. If it does, this is considered a positive crossmatch, and this condition decreases the likelihood of a successful transplant.

In the hopes that we can avoid the expected seven year wait, I have begun the process of attempting to see if I can become a living kidney donor. Unfortunately, since Jeanne is blood type O (the universal donor) and I am blood type AB (the universal receiver), I will not be able to donate a kidney directly to Jeanne. However, there is a small possibility of us being able to participate in a donor swap, whereby we could be matched up with an O-type donor and an AB-type recipient who are otherwise incompatible due to poor antigen matching or a positive crossmatch reaction. While the chances of us being successfully paired up in this manner are somewhat minimal, they are certainly better than if I try than if I do not.

Deciding to donate a kidney is a major life decision, so I could never ask someone directly if they would be willing to join me in my attempt to provide Jeanne a living donor kidney. It simply would not be appropriate in my mind to put someone on the spot like that. There is certainly pain involved, various emotional issues to sort through, potential financial impacts, and some small risks associated with the surgery itself. It is not a decision to make hastily, nor one to be made because you feel pressured to do so. However, given Jeanne’s health and the reality that even if a match is eventually found for my kidney, it could take quite some time before that happens, I feel it my duty to at least put some information out there which would enable someone who might be willing to step forward to do so.

If, after careful reflection, you do feel that you may wish to become a potential kidney donor, you may contact the Rogosin Institute Transplantation Center at (212) 517-3099 and inform them that the patient you are inquiring about is Jeanne Tobin. Jeanne’s clinical transplant coordinator is Warren Phillips. You may speak to him or to another member of the transplantation staff. They will be happy to answer any questions you have about kidney donation and will respect your privacy along the way as well. If you wish to do some research on your own, you may find the information at http://www.rogosin.org/treatment-transplantation.php to be helpful.

Thanks,

Bob Sayah

a soggy Halloween

Happy Halloween, everybody! It was another fun night of trick-or-treating for the Sayah boys (all four of us :-)). Jason went as Mario from the Nintendo games. As usual, Jeanne did a great job of pulling together the costume.



Brian and I went as Elmer and Boris the Dragon from the book My Father's Dragon. Jeanne got off easy here, as these costumes were still sitting in the crawlspace from 8 or so years ago, when TJ and I went out in these costumes. I just had to make some new wings for the dragon this afternoon.



I don't think these books as very widely known, as noone could name who Brian and I were. But, if you have kids in early grammer school, I highly recommend you find these books for them. And if they really get into them they way all of my kids have, we've got some costumes you can borrow next year!

TJ wasn't going to go out trick-or-treating this year, but at the last minute he changed his mind and joined us. He pulled together a costume using a mask and some props from his school play last year, where he played the role of the Executioner.



Here's one more picture that was just too cute to not post.



After about forty-five minutes of trick-or-treating in the light rain, it started to fall more heavily, and we all started to get pretty soggy. My wings collapsed and I could feel my tail starting to get really heavy from all of the puddles it was getting dragged through. Brian's backpack (which was a cereal box covered with brown paper) got wet and then the shoulder straps fell off. So, we headed back home (without too much complaining) and spent the rest of the night greeting the trick-or-treaters coming to our door. Seems like the rain led to a lighter turnout than usual. Time to go turn off the lights and call it a night!

first visit to the Walkway over the Hudson

Today, I got my first chance to visit the Walkway over the Hudson which opened up about a month ago. For those that don't know, the Walkway over the Hudson is a new state park where they converted a former railway bridge into a path across the Hudson River from Poughkeepsie to Highland. You can learn more about this wonderful new place from their website.

Jason, Brian and I went together to check out the walkway while Jeanne stayed home to get started on Halloween costumes and TJ was off at play practice. I had heard that there would be a free shuttle bus from the nearby train station, so I decided to go there rather than try to find parking at the site, as I was certain the place would be crowded on such a beautiful day. Turns out that was the right plan. The lot at the park was full and the guy across the street was charging $5 to park in his lot.

Jason and Brian enjoyed the bus ride over.

Once the bus dropped us off at the park, we had to walk down a short path to get to the bridge.

With the fall colors, the views were spectacular.

Here is Route 9 from a new perspective

Finally, out over the Hudson River!

Looking south at the Mid-Hudson bridge

At this point on the bridge, we ran into the Marist women's basketball team. One of the girls was nice enough to offer to take pictures of the three of us, so I get to upload a couple of pictures that have me in it for a change.

Well, since Brian and Jason were getting tired of walking, and we had to pick up TJ soon anyway, that's as far across as we got today. So, we turned around and headed back.

As we reached the end of the path, we saw the bus pulling away, so we had to hang out and wait for a while. Brian and Jason had fun passing the time.

But, then the bus finally showed up to bring us back to the train station.

We ended up being a little late to pick up TJ, but the three of us thought it was worth it. And since TJ got to go over the bridge earlier in the week with some classmates (and none of us), he couldn't complain too much. With November just around the corner, I imagine that's the only chance we'll get to visit this year. When spring comes, we'll have to plan a nice day of it and go all the way across - maybe even pack a picnic lunch to eat over on the other side.

TJ's Confirmation

TJ received the sacrament of Confirmation last evening at our parish church of St. Martin de Porres. TJ chose to confirm under his baptismal name of Thomas in honor of Saint Thomas Aquinas, the patron saint of scholars. TJ received a little special attention from the bishop due to the fact that he decided to write his letter to the bishop in both English and Latin.

Here's a picture of TJ and his Nana, whom he chose to be his sponsor.

And here's a picture of the family with Bishop Lagonegro.

I'm very proud of the fine young man my son is growing into.

PKD publicity on CBS Early Show - tomorrow!

Received the following email and thought I would pass it along on here in case this is able to reach someone not already on the mailing list. This is tomorrow! Sounds like a great chance for some more publicity for PKD. Hope they are able to draw a good crowd, but midtown-Manhattan at 7:15am on a weekday with three kids to get off to school just isn't realistic for us. If nothing else, though, set your VCRs and DVRs.

We have just officially booked the CBS Early Show for this coming Monday morning, October 19, 2009. In order to maximize our media attention, we need 20 people to come down to CBS Plaza and fill our shot - we have guaranteed air time. Wear your teal Walk for PKD t-shirt or we'll provide one. We also encourage you to make signs that include the website…www.pkdcure.org. Please e-mail us as soon as possible if you are interested in attending! tristatewalk@pkdcure.org Bring family, friends, colleagues to help guarantee us as much air time as possible! Or pass this email on to anyone else who may be interested. Please let us know if you have any questions. Hope to see you Monday morning! Meeting details are as follows: Arrive by: 7:15 a.m and leave by 8:50. Report to 59th St and 5th Ave, the southeast corner of Central Park. It's in the same building as FAO Schwartz. The camera people and crews, and barricades are out early so you can't miss it. Everyone should dress warm but the Apple Store will allow us to stay in their store for warmth. If anyone would like a tour of the inside of the studios at 9 a.m, CBS will probably do that for us

pictures from walk day

Finally got some pictures from the walk. Thanks, Dad!

Here's Sam, this year's walk coordinator, along with his bodyguards. Positions of power such as his require extra attention to security.



Here's Jeanne taking care of the Hudson Valley Chapter information table.



Jason hanging with a stormtrooper.



Brian and Pop-Pop waiting for their chance to say hi to the stormtrooper. There's Kenny the Kidney in the background.



A picture from the walk route. Notice how everyone is in front of us, as usual.



One of my favorite touches is the signs they put up along the walk route. Here's one congratulating TJ for his fundraising efforts the previous year.

Back at the pavilion, it's time for some eating and socializing!

Brian, don't fill up on soda!

TJ once again received the award for second place youth fundraiser. He's not looking as youthful as he used to, though! In the foreground, Luke raises up his first place trophy.

Thanks again to everyone who helped make this another successful year for Team Teddy Bear and the entire Hudson Valley Walk fo PKD!