Monday, December 31, 2007
At precisely the same time, I was working hard at my office in East Fishkill (that’s my story and I’m sticking to it) when suddenly the lights went off and the computers all went dead. Of course, being less than two years removed from 9/11, the “terrorism” thought shot through my mind, as I’m sure it did for many. We quickly found out that this was a widespread blackout, and then it hit me: my pregnant wife and 8 year-old son are going to be stuck in NYC. Jeanne did not yet have a cell phone (not that it appears it would have done much good if she did) so all I could do was drive home and wait for a phone call. Finally, around 8PM, the call came. TJ, Jeanne, and her mom had headed across town to her Aunt Audre’s apartment in Tudor City. They would plan on spending the night there and would figure out a plan for getting home the next morning.
Of course, the next problem for Jeanne was what to do about her medication. She fully expected to be home that evening, so she did not have her nighttime dosages of medications available to her. So, Audre and Jeanne had to make the trip 30 blocks uptown to the New York Presbyterian ER to get some medication prescribed. They attempted to take a bus, but the going was slow and Jeanne quickly became queasy, so they ended up walking much of the way.
While they were gone, there were some interesting conversations going on back at the apartment. We had just a few days earlier decided that the pregnancy had gotten far enough along that we shared the news with TJ that he was going to be a big brother, but noone else knew yet. We were planning on letting everyone else know that weekend, so we didn’t make a point to TJ to keep the news under his hat. So, TJ was trying to tell his grandmother and the rest of the crowd at the apartment that his mom was going to have twins, but nobody would believe him. When Jeanne finally returned in the early hours of the morning, she confirmed the news.
Sunday, December 30, 2007
Post-transplant also seemed to present difficulties in our attempts to have more children. In the first five years after the transplant, Jeanne twice had to go in for outpatient DNC surgery following miscarriages. But then, in July of 2003, we learned Jeanne was pregnant again. I recall Jeanne calling me up at work after her first sonogram saying she had some news from her doctor’s appointment and asking me when I would get home from work. I asked her, “Good news or bad news?” to which she cryptically responded “It depends” and said she would share the news with me when I got home. Of course, I was rather unproductive the rest of the afternoon as I wondered what kind of news she could have to which “It depends” would be an appropriate response. Somewhere along the way, the thought struck me: Are we having twins?!?!?! Sure enough, when I got home, Jeanne showed me the sonogram confirming my suspicion.
As time passed and the news sunk in, the appropriateness of the “It depends” response became very clear. While on the one hand, I was ecstatic that Jeanne was pregnant, I was very concerned that two babies instead of one made it even more unlikely that the pregnancy would be a success. So, the term “mixed feelings” was very much in play here – although I think the mix here was happiness and anxiety.
Saturday, December 29, 2007
Thankfully, Jeanne was blessed to have three relatives step forward to be tested for possible donation – one sister and two aunts – and all three were deemed suitable enough matches. It was somehow decided (by the three of them and the doctors, not us) that her Aunt Susie would be the one donating a kidney to Jeanne. I hope there is a special place in heaven for her!
The kidney transplant was scheduled for May 26th, 1998 at New York Presbyterian Hospital. Jeanne and Susie were admitted to the hospital the day before, which happened to be Memorial Day. The day of the surgery was one of the longest I’ve ever experienced. First of all, the surgery was originally scheduled for 7 am, but she didn’t end up leaving her room until nearly 11am. Then, it was wait around all afternoon while the two of them underwent several hour surgeries. I tried my best to kill time by leaving the hospital for lunch, and then heading over to Our Lady’s Chapel at St. Patrick’s Cathedral (where we got married) for some prayer, and then just walking around the city for a while. Then, I headed back to the hospital, and waited, and paced, and waited, and paced.
Finally, after what seemed like an eternity, Jeanne showed up back at the room around 7pm. The difference in her appearance coming out of surgery was dramatic – her face almost immediately had more color to it and I was amazed at how good she looked coming out of major surgery. Almost immediately, she had a heightened energy level.
Jeanne stayed in the hospital for ten days. Today, it is not unusual to be out in 3-5 days after a transplant, but ten years ago, the average stay was around 19 days. She might have been out a little earlier, but about day 6 or so, there seemed to be a little mix-up on the medicine front. You see, they have to play games with the dosage of the Neoral (immunosuppressive drug) to get it just right. Too much, and you have no immune system – too little and your body rejects the kidney. So, at one point, they apparently made a bad adjustment, and it took a couple of days to get the levels back to where they wanted.
Once Jeanne was back at home, Jeanne slowly began her recovery. We had to make twice a week follow-up visits at first (a 70 mile trip each way) and after being home for about a week or so, Jeanne had to make a middle-of-the-night visit to the ER (again back in NYC) after finding some blood in her urine. Thankfully, that turned out to be nothing of any consequence. Gradually, things settled back to “normal” (whatever that is around here). It was certainly good to see Jeanne’s energy back.
Friday, December 28, 2007
Jeanne's medical care was pretty uneventful for the first couple of years – and uneventful is exactly what you want when you are dealing with PKD. Then, in December of 1994, we learned Jeanne was pregnant! Having PKD, Jeanne was immediately assigned to be followed as a high risk pregnancy. Very early on, she was told to be on full bed rest and to show up at the doctor’s office three times a week for monitoring (we never did figure out how you are supposed to get any rest if you are always at the doctor’s office!). Despite all of the extra care she was under, most of the pregnancy went fairly smoothly. The highlight early on was probably when I fainted at the first sonogram. Then, about six weeks before the due date, Jeanne had a sudden drop in her kidney function. Thankfully, it quickly recovered, as we found out later that she would have been put on dialysis otherwise.
Finally, about a week before the due date, during one of Jeanne’s doctor visits, her blood pressure was way too high, and they scheduled an emergency C-section for that evening. At 8:46PM on July 27, 1995, TJ was born!
Thursday, December 27, 2007
It seems that as long as I have known Jeanne, she’s been suffering from PKD – although we didn’t always know it. Jeanne and I met in college back in 1986 (wow, how time flies!), and as far back as I can remember, Jeanne would get these sharp pains in her side from time to time. She would describe the pain as “feeling like someone was sticking a knife into me”. Of course, the medical clinic at college was pretty worthless, so there was no explanation of these pains forthcoming from them. Later, after graduation, Jeanne landed a job where she was covered by insurance, and proceeded to see several doctors to try to find out what the deal was with this pain. Several different tests of several different body parts provided no answers.
In September of 1992, we got married. Soon after, Jeanne went for another test, this time a sonogram of the gall bladder. Thankfully, this time, the sonogram technician decided to do a little extra exploring and took a look at the kidneys, finding them full of cysts. This led to a follow-up appointment with a nearby nephrologist in Poughkeepsie, where we received an official diagnosis of PKD.
The thing I remember most about that appointment was the complete lack of compassion that this nephrologist had and the absolute sense of doom he was able to impart on us. He actually took out a book and showed us pictures of a newborn infant with polycystic kidneys and explained to us how since PKD is a genetic disease, we shouldn’t even consider having children. Wonderful thing to say to a newlywed couple on the day they are learning they have a chronic disease to deal with! Needless to say, that was our first and last appointment with that particular nephrologist.
...to be continued...
Sunday, December 23, 2007
TJ's school held their winter concert this past Friday. The seventh grade is studying jazz and blues, so for the concert, they performed a blues version of Merry Christmas Baby. TJ and a couple of his classmates, Danielle and Corinne, volunteered to do some solo lines and they were awesome! Here's a (unfortunately not-very-high-quality) video of the performance:
I'm not sure that it comes across too well in the video, but TJ was great! He really belts out his lines and captures the feeling of the blues! TJ is in the white shirt seated on the right side of the group.
Saturday, December 22, 2007
Tuesday, December 18, 2007
Wednesday, December 12, 2007
Paired Kidney Donation allows for "swapping" of kidneys between patients and willing donors in cases where the willing donors are not suitable matches for those they wish to donate to. For example, say there are two husbands who each want to donate a kidney to their wife, but they find that their kidneys are incompatable. If it turns out that Husband A is compatable with Wife B, and Husband B is compatable with wife A, then they can arrange for the transplants between the compatable, unrelated, donors and recipients, even if they do not know each other. (Gee, the way I tell it it sounds like a reality TV show, doesn't it?)
The potential problem was that since it is illegal to sell a kidney (or any other body part), there was some danger that someone, someday could claim that paired donation was a form of "selling the kidney" and cause a legal hassle for those wishing to pursue this option. This bill, once President Bush signs it, will close that potential loophole.
This is important to me personally, as I am not a compatable donor for Jeanne. Jeanne, and practically her entire side of the family have type O blood. I have type AB. As Jeanne likes to joke, I've "contaminated the blood supply"! Since Jeanne received her transplant when she was just 31, there is a very good chance that she will outlive the transplanted kidney, and need another transplant someday. With Paired Kidney Donation, there is a chance that I could be part of the process that leads to her getting a new kidney.
My thanks to Sen. Carl Levin (D-MI) and the late Rep. Charlie Norwood (R-GA) for sponsoring this legislation.
Monday, December 10, 2007
Sunday, December 9, 2007
followed by Brian
then, Jason and Brian together:
Next, TJ got into the act and helped:
Then, today, we went to Brunch with Santa at the Links at Unionvale.
I briefly thought we were going to have a problem this morning, because when we showed up for the brunch, they apparantly had no record of our reservation. However, I was extremely impressed that, without any hesitation at all, they simply and immediately pulled together another table for us and sat us down!
Sunday, December 2, 2007
Thursday, November 29, 2007
The meeting started out with business first. Here's some of what is going on:
- The chapter is holding a bunch of book wrap fundraisers down in White Plains and Mt. Kisco. Michelle seems to be leading the charge for that.
- The current updated walk fundraising total for the chapter is $57,611.75. A pending grant of $3700 from Best Buy (37 walkers - $100 per walker!) will put the total over $60000!
- Next year's walk date is set for Saturday, September 20th. Sandy will be co-coordinating with Heidi next year.
- Diane introduced the idea of raising money through the recycling of ink cartridges and cell phones through www.fundingfactory.com
- On March 15th, the chapter will be hosting an educational seminar at the NYU School of Medicine.
Next, the meeting was turned over to Taryn, who is the Northeast Region volunteer manager, based out of Washington D.C. She gave an update on foundation happenings, focusing on Advocacy. Here's some of the highlights:
- Congress is considering passage of two bills of importance to PKD patients: the Genetic Information Non-Discrimination Act and the Comprehensive Immunosuppressive Drug Coverage for Transplant Patients Act. You can help by contacting your representatives and asking for their support. For more information, check out the PKD Foundation Web Site.
- The PKD Foundation is holding an Advocacy event in Washington on March 3 and 4, where people will have a chance to lobby congress about issues important to PKD Patients, including research funding.
- The Foundation is changing from a membership program to a partnership program. The main change is that all donations from a person to the Foundation will be counted towards one's partnership level, regardless of how those donations are made. Previously, people who were donating only through the walk for PKD were not being counted as members, and were therefore not receiving mailings such as the PKD Progress magazine.
- The PKD Foundation will be focusing on increasing its presence on the internet - chat rooms, message boards and the like - and also looking to increase its advertising on the internet. An online marketing manager was recently hired to lead this effort.
- The 2008 National Convention on PKD will be held in Dallas from June 20-22.
- The PKD Foundation will be publishing a cookbook next year - full of kidney-friendly recipes.
- Nationally, the PKD walk total money raised is nearing $3 million, up from $2.1 million in 2006, $1 million in 2004 and $214,000 the first year in 2001.
There was a lot of good discussion surrounding all of the topics. I think the chapter will be looking to me to be the "northern connection" for the chapter activites. For example, Diane has asked me to try to figure out what the right outlets are up here (newspapers, radio, magazines and other publications) for spreading the news about the chapter happenings, especially the walk. Thankfully, I can lean on Jeanne's Junior League experience to help me figure that out.
I talked to Heidi afterwards to get an idea of how often the chapter meetings occurred. It appears they are rather sparse in the winter and then pick up around April and through the summertime as the walk appoaches. This should be good for me as I try to get more involved, as things tend to be a lot more hectic during the school year than the summertime.
Tuesday, November 27, 2007
The 2007 Hudson Valley Walk had a wonderful year. We had 237 registered walkers and together we were able to raise $57,526! Thank you to everyone who helped in our fundraising efforts and we hope to see you all again next year.
I think that total is down a little bit from last year. But, I believe last year's fundraising was dominated by a couple of people who raised huge amounts of money. This year, there were a lot more people contributing solidly to the total - which means despite a slight decrease in the amount of money raised, there is a more solid base to build from for the future.
Sunday, November 25, 2007
Saturday, November 24, 2007
Things I am thankful for:
Jeanne - for more that two decades of love, friendship, companionship and support. There is noone I'd rather go through life with.
My parents - for their guidance and example, and for always being there in our times of need.
My kids - for providing the perspective of a child to my life and for calling me "Dad"
Susie - for her generous kidney donation - a gift that can never be equaled
Beth and Kateri - for also being willing to donate
my job - as it gives me the opportunity to provide a good life to my family and the medical insurance that we'd probably be broke without.
the PKD Foundation - for leading the way in support for those dealing with PKD
my brothers and sister - it's rare that four siblings get along as well as we do.
holidays - for giving us an excuse to step aside from our busy lives and spend time with those we love
friends and neighbors - who have provided us with all sorts of help over the years
kidney transplants - without the kidney transplant, it's hard to imagine what my life would be today.
doctors - we've been blessed to have many good ones over the years
a good night's sleep - the rare times I get one, it's amazing how refreshing it can be!
Monday, November 19, 2007
Sunday, November 18, 2007
Wednesday, October 31, 2007
They were out for a couple of hours and gathered a lot of loot. Apparantly, Ben had a "costume malfunction" somewhere along the way, though. He started out as the headless horseman and ended the night as a Red Sox fanatic. Sounds like the guys had a great time. Now I'm off to raid the candy bowl!
Sunday, October 28, 2007
Saturday, October 20, 2007
Here's Brian and Jason enjoying a game of baseball.
And, yes, Jason does know he's wearing his shirt backwards. It's his thing right now.
Thursday, October 18, 2007
Thank you to all of you for being such dedicated team captains. Almost all of our teams this year were "repeats"- and most were bigger than ever before! The time you spent organizing, recruiting, and fundraising paid off! Despite the rain, we had a bigger turn-out than ever before and have raised close to $60,000. You played a big part in that success.
The top team fundraisers for 2007 are:
1st: Three Peas in a Pod (captain Michele Karl) with $15,521
2nd: Luke's Team (captains Kirsten and Stuart Sclater-Booth) with $10,721
3rd: Hooked on Hope (captain Heather Buckley) with $5,606
Honorable mention goes to:
Team Teddy Bear with $4,300 (with only 7 hard-working walkers!)
and Benny's Brigade with $4,061.
We had a lot of teams that raised thousands of dollars. Great work and we hope to see all of you back in 2008! Sept. 20, 2008, to be exact...
Volunteer Chapter Coordinator
PKD Foundation-Hudson Valley Chapter
Great job, Team Teddy Bear!
Tuesday, October 16, 2007
Monday, October 15, 2007
OK, so in the end, Mom helped out just a little
Dad decided to get one with a stem
OK, we've all got pumpkins - time to head back!
The only disappointing part was that when we got back, we found they were out of cider and donuts. That's my favorite part! So, instead, we stopped and grabbed some on the way home and made ourselves a picnic around the kitchen table.
Saturday, October 13, 2007
"Thanks to all the participants, sponsors and volunteers who made the Hudson Valley Walk for PKD such a huge success!
More than 220 participants, spectators and volunteers joined us for a perfect (but rainy!) day of raising funds for PKD research and awareness of polycystic kidney disease in our area. Together, we have raised over $54,000 and the total just keeps rising! Online donations can be made through the end of October and checks can still be mailed directly to the PKD Foundation (please use this form to make sure your donations are credited correctly).
Top fundraiser prizes were given out on Walk Day to Michele Karl, Stuart Sclater-Booth, Bob Sayah, Luke Sclater-Booth, and Thomas Sayah, but we were unable to give out Top fundraising team prizes. As of walk day, Three Peas in a Pod and Luke’s Team were within a few hundred dollars of each other… and so 1st and 2nd place could not be definitively awarded without double checking the math. Similarly, Hooked on Hope and Team Teddy Bear were both in the running for 3rd place and “too close to call”. All 4 teams have had additional funds come in since walk day, but at 10pm on October 15th the final determination for these prizes will be made and the award plaques will be sent out to the captains of the winning teams. So, if you have donations to send in, do it now!
Help take us over the top! You can still: - Follow up with that co-worker or friend who wanted to donate but just forgot. - Follow up on matching corporate dollars. Get us your corporate paperwork and donation information, we process the request. This can be an easy way to double, even triple your donation!
A Special Thanks goes out to all of our sponsors, as we could not have done it without all of your help!
Nationally, the Walk for PKD has raised more than $2.5 million and we played a significant part in it all. We were one of 72 walks held across the US and in three International locations. To say it was a huge success is an understatement!"
Thursday, October 11, 2007
Saturday, October 6, 2007
So, thank you, PKD Foundation for being the kind of charity that spends its money wisely, rather than on frivolous things like address labels. If need be, I can always write the return address by hand!
Wednesday, October 3, 2007
That makes three sets of twins out of the 16 Halpin great-grandchildren. Guess they're right about twins being hereditary.
They weigh in at 4 lb 7 oz and 4 lb 10 oz - just a little bigger than Brian and Jason were when they were born.
Hope Dan and Rachelle are all caught up on their sleep, because I know from experience they've got a lot of sleepless nights ahead of them. Best of luck to them as they begin their journey through parenthood!
Tuesday, October 2, 2007
"Hello to all you supporters of PKD research.
It was another record year for the MN Walk for PKD!!
There were 771 participants (compared to approximately 700 in 2006, 500 in 2005 and 250 in 2004) in the MN Walk for PKD. As of today, the MN Walk for PKD raised $160,000 for PKD research (compared to approximately $140,000 at this time last year, $100,000 in 2005 and $55,000 in 2004).
Thanks to all of you, volunteers and participants, for this great success. One day, when we have a drug treatment to manage PKD, maybe even a cure, YOU will have the satisfaction of knowing that YOU were part of the solution!!"
It's great to see all of the numbers heading upward! Hopefully, the Hudson Valley Walk will have similar news soon. I'll certainly pass it along once I hear something.
Sunday, September 30, 2007
It was held, of course, at Kopici's retaurant in Bloomingdale, NJ - Mom and Dad's favorite hangout. It was planned as a surprise party, and she sure was surprised! I wish I had my camera ready as she entered the room to catch the look on her face. She was truly touched and very choked up. It was so great to see her so pleasantly surprised. Here's some pictures from the party.
Here's a picture of the whole gang (well, almost all of us - some of us had to snap the pictures)
The grandchildren had a great time together, as they always do. We had a entire back room to ourselves, and there were only tables set up in half of it, so there was plenty of room for the kids to let out their energy.
My cousin, Nancy, gets the credit for all of the planning and for pulling off such a great event. Thanks for everything, Nancy! Here's a picture of her and her husband, Ken.
While socializing, I received lots of nice words of praise and encouragement from people about our efforts for the Walk for PKD. Thanks, everybody, for all of your support. It really helps keep me motivated!
The only bad part of the party is it went by way too quick!
Happy Birthday, Mom! We love you!!!
Sunday, September 23, 2007
Monday, September 17, 2007
Saturday, September 15, 2007
We managed to keep up with the crowd for a while
until it basically became just us, taking up the rear, with noone in sight in front of us
It facts like this that really motivate me to do things like participate in the walk and put this blog together to try to spread the work about PKD. Why such a large disparity?
There also were a bunch of signs naming sections of the walk route in honor of last year's top fundraisers. I thought that was a nice touch.
Once back at the pavilion, we enjoyed a nice lunch provided almost exclusively by donations from local businesses. Some awards were handed out recognizing top fundraisers for this year. TJ and I were both recognized this year for our fundraising efforts - we must, however, share that honor with all of you who supported us!
It was a really great time for all of us. It's a chance to come together for a good cause and meet people who have been dealing with PKD in one way or another and to share experiences. We're already looking forward to next year! And, to all of you who helped Team Teddy Bear raise more that $5000 this year, I leave you with this:
Friday, September 14, 2007
Calling for some showers right during the time of the walk. Oh, well. Last year was absolutely a gorgeous day, so I guess these things need to even out a bit. At least it won't be pouring like it did at Bridget's bike ride for MS last year. Guess we'd better bring along some rain ponchos.
But, the weatherman is always wrong, anyway.... right? We'll see....