redefining job dedication

Aside from the fact that Jeanne has PKD, one of the main reasons I have been such a strong supporter of the PKD Foundation is that I have found the people who work at the Foundation to be very passionate about their work. You can tell that working at the PKD Foundation is more than just a job for them - they are truly partners in the drive to cure PKD.

Now Leigh Reynolds, who is the Senior Manager of the Walk for PKD at the PKD Foundation, has taken this passion to an even higher level. Read this story and watch the video to see what I mean.

bone marrow and kidney transplant article in Boston Globe

I found this one really interesting. It goes into a good amount of depth on the bone marrow and kidney transplant procedures being done at Mass General over the past several years.

New England Journal of Medicine article

HeatherT has found some information from the New England Journal of Medicine related to bone marrow injections in conjunction with kidney transplants.

Northwestern Memorial Hospital's stem cell study

A couple of weeks ago, I made a post on transplanting stem cells along with a kidney. My sister helped me track down a little more information, but I found myself still with a lot of questions. Today, thanks to a press release on Northwestern Memorial Hospital's website, I think I have a much better idea of what this is all about. It sounds like it is still pretty experimental, and very much limited to "perfect match" sorts of kidney transplants right now, but if this ends up being successful, and eventually more broadly available to "less than perfect match" transplants, this would be a HUGE breakthrough. Being able to receive a kidney transplant without having to stay on immunosupressive drugs would greatly improve the quality of life for transplant recipients.

PKD discussed on Dr. Phil

I saw this post on ThirtyWhat's blog today, but too late to set the DVR. Apparantly, Polycystic Kidney Disease was discussed on the Dr. Phil show today. Not having gotten a chance to see it, I can't really comment any more than that, but I did find a message board related to today's episode. Included on the board are quite a number of personal stories related to dealing with PKD. I found this one by Karen in NJ especially touching.

If anyone coming across this blog happened to see the episode, I'd love to hear your thoughts. I figure any mention of PKD on a show like Dr. Phil has to be a good thing.

NYC Metropolitan Area ADPKD/ARPKD Education & Awareness Seminar

The NYC Metropolitan Area ADPKD/ARPKD Education & Awareness Seminar will be held on Saturday, March 15 at the NYU Medical Center 550 First Avenue, between 30th and 33rd streets in Manhattan. The program runs from 10:00 a.m to 3:00 p.m. The cost is $10/person and includes lunch.

Scheduled topics include: ADPKD, ARPKD, Research News, PKD & Your Diet, and Employment and Insurance Issues for People with Genetic Illnesses

For more info, see the Hudson Valley PKD Chapter Home page or view the event flyer.

We all need somebody to lean on

The snowman we built on Monday, looked like this on Thursday:

and like this Saturday morning.

Defense

Found this nice picture of TJ on the DDS Sports Blog. You can check out more pictures from one of their recent games here. TJ is number 32.

Let it snow

We got a really nice snowfall last night - about four or five inches of really good packing snow. School was cancelled for TJ, and I elected to work from home for the day. The boys and I got outside for a little bit this morning and we put together our first snowman of the year. The snow was so packable that we were able to put together a six-foot snowman in all of about 10 minutes.



Hopefully, this will be the start the local ski slopes need so that TJ can go skiing this Friday. The warm weather last week caused skiing to get cancelled.

more on bone marrow and kidney transplants

Well, my sister did some googling and appears to have come up with some more information, right off the PKD Foundation web site. The essential part of the article is:

For her second transplant at age 22, she opted for an experimental treatment that would allow her body to tolerate the new organ without drugs.
Doctors began by using radiation and chemotherapy to weaken Searl's immune system. Then she received both a kidney and bone marrow to regenerate a new, compatible immune system from her donor - her mother.

Jeanne and I immediately both had the same question: So, what keeps your new immune system from attacking your old organs? In any case, it does appear this procedure has demonstrated some success, which is pretty exciting.

Thanks, Cindy, for tracking this down for me!

Transplanting stem cells along with a kidney

If you look far enough down the right side of my blog, you will see a section called "PKD News Search". One of the current links is to an article A quirky party in praise of the kidney. While the article is mostly pointing to the fun surrounding a pre-transplant party, the part that caught my eye was the following:

Doctors also will transplant stem cells from Flood's bone marrow into Yelk, with the hope of eliminating the need for anti-rejection drugs that can trigger negative side effects.

I've never heard of any such thing, and neither has Jeanne. If this is actually factual, this would be a pretty exciting development. Really, the whole downside of the kidney transplant is the side effects from the anti-rejection drugs. If the kidney recipient didn't need to take the anti-rejection medication, the kidney transplant would become a lot more like a cure for PKD.

If anyone has any information about this, please help enlighten me by leaving me a comment with whatever you know.

trip to the New York Botanical Gardens

Since TJ was still on break yesterday, I took the day off from work and the family went to the New York Botanical Gardens. They we having a special holiday train display where they had a bunch of model trains set up around a large number of models of various buildings and structures which are located in and around New York City. The unique thing about these models is that they were built completely out of plant materials - sticks, branches, bark, seeds, leaves and the like. It was rather awesome - and very unique! I was able to get a bunch of pictures before the camera quit on us.



There was Ellis Island



The Statue of Liberty.



Rockefeller Center



The Metropolitan Museum

The New York Public Library

The Guggenheim Museum

The Brooklyn Bridge

St. Patrick's Cathedral

and the family favorite, Yankee Stadium!

If you click on the pictures, you can see a large version of each which hopefully gives enough detail to appreciate the intricate workmanship that went into these.

Later, we stopped in the cafe for lunch, and then we headed over to a gingerbread display they had in the children's area. The kids enjoyed running around for a bit there, even though it was a bit cold. No good pictures from that part, unfortunately, as the camera decided that was enough for the day.

Afterwards, we headed to NJ to visit my parents and drop TJ off for the evening, so he could go since the Grinch today with his Nana.

pictures from Christmas Day

Finally getting around to posting some pictures from Christmas Day. Jason was the first one up in the morning:


We let TJ and Brian sleep a little longer (but only a little longer) as we had to get everyone going so that we could attend 10:30 AM mass - TJ was signed up to be an altar server.






The stockings were filled - no coal!



The Christmas tree looked beautiful with all of the presents under it



at least for a short while...



Brian and Jason enjoyed their bowling pin set:



TJ was excited about getting a ham radio. He found a copy of his new call sign under the tree as well! He is KC2SQB for those of you who might also enjoy the hobby.



We had 15 in all for Christmas dinner - there was the five of us; Jeanne's sister Alexis who stayed with us for a few days; Jeanne's parents; my parents; my brother Jay; and my brother Rick and his family. I guess the camera was put away at that point of the day, as I don't seem to have much for pictures from when everyone was here. Too busy socializing (and eating!) Jeanne made a wonderful dinner, as she always does. First course was a turnip soup and the main course was a stuffed pork tenderloin. Mmmmm. The desserts were too numerous to mention.



Then later, Jeanne's Aunt Mary, Uncle John, and cousin Danielle and her family stopped by on their way home from the airport.

One of my favorite Christmas time traditions is the "wall of Christmas cards" that we always create with all of the cards, letters and pictures we receive:





It really was a great Christmas this year.

Our PKD Story - Chapter 7: Present Day

Thanks to the kidney transplant, the second pregnancy did not seem to have as big a negative effect on Jeanne’s health as the first. Still, Jeanne continues to have more than her fair share of medical issues, a result of the unfortunate reality that you have to suppress your immune system in order to prevent your new kidney from being rejected by your body. About a year after Brian and Jason were born, it was discovered that Jeanne had an ovarian dermoid cyst which was large enough that it needed to be removed. And then, earlier this year, there was the bacterial meningitis which landed Jeanne in the hospital for a week. According to her, this was the worst pain she’s ever had – and she’s had plenty of pain to deal with over the years. And now, she finds herself having to take weekly Epoetin shots to deal with her anemia.

All of these various ailments are one of the reasons that they say a kidney transplant is a treatment rather than a cure. Another reason is that a transplanted kidney doesn’t last forever, so we are prepared for the likely reality that Jeanne will need another transplant somewhere down the line.

On the positive side, though, a kidney transplant does allow you to enjoy life to a far greater extent than the alternative of dialysis, where you must have your body hooked up to an artificial kidney machine three times a week. Jeanne and I have traveled to 38 of the 50 states together, as well as Canada, England and Ireland, much of this since the transplant. We also have three wonderful sons. And, most importantly, we have each other! Together, we'll see what the future brings.

Our PKD Story - Chapter 6: Twins

The next few months were a long waiting game for me. The due date the doctors gave us was March 19th. I figured the odds of going full term were slim, so I was just hoping to get the pregnancy along as far as possible before the babies were delivered. Happily, we made it to Christmas, then to New Year’s, then all the way through January! Then, at a doctor appointment on February 5, 2004, we experienced some déjà vu. Just as was the case when Jeanne was carrying TJ, Jeanne’s blood pressure became extremely high, and she was admitted to the hospital. The difference this time was that since she was only at 36 weeks, they decided to monitor her for a while before making the decision to have a C-section. However, since it was late in the evening, it was determined that the C-section would be the following day.

TJ stayed the night at a friend’s house and I spent the night in the chair in the hospital room. That day must have been a very popular day for delivering babies, because we ended up waiting around until mid-afternoon before going in for the C-section. I got myself all dressed in scrubs ready to accompany Jeanne during the delivery, but then at the last minute I was told that because Jeanne would be under anesthesia, I would not be able to be with her during the delivery. Now this, of course, makes perfect sense – but the last minute news really threw me off balance. So, I spent the next couple of hours as a nervous wreck waiting for news. Finally, at 6:49 PM and 6:50 PM respectively on February 6th, 2004, Jason and Brian came into our lives! The relief I felt that we had two healthy baby boys was so overwhelming, I could scarcely talk on the phone to share the news with my family. They each weighed barely four pounds. Because they were born so early, Jason and Brian had to stay in the NICU for a week before they were allowed to come home on Valentine's Day.