Monday, December 31, 2007

Our PKD Story - Chapter 5: The Blackout

Thankfully, everything proceeded smoothly with the pregnancy for the first few weeks. But, then came Thursday, August 14th, 2003. Jeanne’s mom had bought tickets for The Little Prince on Broadway in NYC and invited Jeanne and TJ along to the show. The show ended and everyone was filing out of the theatre. There was an elevator available, but since the line was long, Jeanne convinced her mom that they should just take the stairs. Just as they were reaching the bottom of the stairs, the lights went out.

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

Our PKD Story - Chapter 4: It Depends

Despite the miracle of the transplant, the next few years held more than its fair share of medical issues to deal with. There is the constant battle against high blood pressure – one of the side effects of the medication is high blood pressure, which is unfortunate, because high blood pressure takes its toll on the kidneys. There was the basil cell carcinoma – a side effect of one of the medications is sensitivity of your skin to sunlight. There was the arrhythmia (rapid heart beat) – which might be completely unrelated.

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

Our PKD Story - Chapter 3: The Transplant

Unfortunately, but not completely unexpectedly, the pregnancy took its toll on the kidneys. Jeanne’s kidney function declined over the next couple of years and in early 1998, we found ourselves talking to a transplant coordinator about having a kidney transplant. We learned that there are two options. The first option is that one can be put on the waiting list for a kidney from a cadaver – where, unfortunately, the supply is not able to meet the demand. The other option is that one can receive a kidney donation from a live relative – but only if there is a sufficient match of blood type and six antigens. In most cases, a "live kidney" will last longer than one from a cadaver.

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

Our PKD Story - Chapter 2: Becoming Parents

Since this first experience was such a turnoff, it ended up being some time before Jeanne made her next nephrologist appointment. Since Jeanne was taking courses at Hunter College in Manhattan at the time, she decided to find a nephrologist in Manhattan and ended up at the Rogosin Institute at New York Presbyterian Hospital. We found the care and compassion here to be much better, and Jeanne still receives her followup care there today. Pretty quickly, we learned that ADPKD (which Jeanne has) and ARPKD (which is surely what the infant had in the picture that the first nephrologist showed us) are completely separate forms of Polycystic Kidney Disease, so the “don’t have kids because they’ll have deformed kidneys at birth” warning was not particularly accurate.

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

Our PKD Story - Chapter 1: The Diagnosis

Well, I've been blogging here for almost six months now, and since I seem to be getting a small but steady number of visitors happening across the blog, I thought it was time to tell our PKD story. So, here goes...

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. be continued...

Sunday, December 23, 2007

Merry Christmas Baby

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

Christmas Card

Here's an online Christmas card from my family to wish a Merry Christmas to all readers of the Team Teddy Bear blog, whether you stop by regularly, or are just here for the first time.

(click on the picture to see full size)

Tuesday, December 18, 2007

My son is a ham in amateur radio. Last night, TJ passed a test which qualifies him for his Technician's Class License. He should have his call sign in about a week which will allow him to go on the air. Hopefully, Santa was watching and will bring him some good ham radio equipment to get him started on his new hobby!

Congratulations, TJ!!

Wednesday, December 12, 2007

The Living Kidney Organ Donation Clarification Act

Congress yesterday passed The Living Kidney Organ Donation Clarification Act (S. 487/H.R. 710). This is important legislation for those living with PKD as they enter end-stage renal failure.

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

All I want for Christmas is my two front teeth

Cindy sent along the following picture of Brandon, who lost his two front teeth the other day. Just had to post it!

Sunday, December 9, 2007

It's beginning to look a lot like Christmas

Saturday, the family went out and got a Christmas tree and then came home to decorate it. Everybody's favorite part is helping to hang the lights. Jason helped first.

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.

Here's a picture of all of Jeanne's guys:

As you can see, lots of smiles this weekend!

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

Surviving A Kidney Transplant

I found the following article "Surviving A Kidney Transplant" somewhat inspiring and thought I'd post a link to it here: