PKD Seminar in NYC tomorrow

Sorry for the late posting....

Don't miss the most comprehensive PKD educational seminar for 2011-there will not be a National PKD Convention so be sure to register for this event by March 31st.

The Polycystic Kidney Disease Foundation 6th Annual Metropolitan Seminar

Sponsored by the: ARPKD, Hudson Valley, Long Island, New Jersey, and New York City Chapters; along with the Children's Hospital at Montefiore

Saturday, April 2, 2011

Registration/Check-in: 9:30am

Speaker Sessions begin promptly at 10:00am

Seminar will conclude around 3:00pm

Please click hereto register. On-line pre-registration closes on March 31, 2011.

*Walk-up Registrations will still be accepted the day of the seminar starting at 9:30am.

Location: Montefiore Medical Center

Cherkasky Auditorium

3415 Bainbridge Avenue @ Gunhill Road

Bronx, NY 10467

http://www.montekids.org/guide/directions

Registration Costs: $15/person or a Family Package of (4): $50.00

Includes a light lunch and beverages (coffee/tea - regular and decaf, water)

Speakers:

Dr. Enver Akalin, MD - Medical Director of Montefiore Renal Transplant Program, Professor of Medicine at Albert Einstein College of Medicine, Bronx, NY

Topic: Update on Kidney Transplantation

Dr. Carolyn Bauer, MD - Director of Montefiore Kidney Care Program, Assistant Professor of Medicine at Albert Einstein College of Medicine, Bronx, NY

Topic: Current State of Clinical Trials in PKD

Dr. Beatrice Goilav, MD - Pediatric Nephrologist at Children's Hospital at Montefiore, Assistant Professor of Pediatrics at Albert Einstein College of Medicine, Bronx, NY

Topic: PKD in Children

Rhonda Warshaw, PhD - Moderator; Clinical Psychologist in private practice, Woodbury, NY; transplant recipient

Topic: Patient Panel - Living with Chronic Disease, Patients - TBD

Dr. Irina Barash, MD, MS NYU Division of Nephrology

Topic: Brand new PKD trial soon to be available to patients. A multicenter, placebo-controlled worldwide study sponsored by a major pharmaceutical company to test the safety and efficacy of an investigational drug in patients with PKD is coming to the New York University Langone Medical Center next month.

Lunch Sessions:

Zari Ginsburg, MS, RD, CDN

Topic: Better Choices for a Kidney Friendly Diet

Charles J. Newman

Topic: Insurance Issues for PKD Patients

Again, to register for this event, please click here.

For any further questions, please contact Susan Caplan, NYC Chapter Co-Coordinator at 917-299-8200.

There will be no National Convention this year - so these are great opportunities and the best way for you to get the most current information on PKD!

Pinewood Derby

Friday night was Brian and Jason's first Pinewood Derby as Cub Scouts. They each made the finals for the Tiger Cubs competition. They both enjoyed themselves immensely, as you can probably tell from this picture.



Brian also received an award for "Best Scout Spirit Car" which he shows here:



TJ stepped in to help with the running of the races. I was very proud of how he came forward to help out without being asked.






A big thanks to Bron for taking over and running this for me. I had originally volunteered to run this event, but I had to back out after Jeanne and I got the good news about being able to become part of a kidney donation chain!

second post-surgery followup visit

It was back down to NYC today for another visit with Dr. Del Pizzo. The good news is that there is no longer any sign of infection. The bad news is that my wound is still going to need some more time to heal. Since my last visit, I've been packing the wound with gauze to help it drain. Well, I guess I need to pack it a little more tightly, so I need to start using a larger size gauze and push it in a little tighter each time I change the dressing. I'll go back and see him again in two more weeks.

Today was certainly my best day since the surgery. I had a meeting at TJ's school, drove back and forth to NYC for the doctor's appointment, brought the kids to CCD, did some food shopping and still don't feel completely drained. Tomorrow, I'll be going back into the office for work for the first time since the surgery, so I hope the good energy levels continue.

Jeanne's been doing pretty well also. Her biggest issue right now is that one of her muscles that got pushed around pretty good during the surgery is bothering her a bit. But, the new kidney seems to be doing great! And, she drove for the first time since the surgery today. She'll still need to minimize the amount of time she spends in public places for a few more weeks, but at least she can now do a quick errand or two if she needs to.

Meet Barbara and Karen

In my previous post, I had mentioned that Jeanne had gotten a call from Marian, our transplant coordinator, stating that Jeanne's donor would like to be in touch with her. Since then, we've made contact (via email and Facebook) with Barbara, who donated the kidney that is now inside of Jeanne, and Karen, who is Barbara's daughter who received a kidney as part of the chain. They both seem like wonderful people.

Barbara, as it turns out, is not from California, as we originally thought, but from Florida. Barbara flew out to California, where her daughter lives, to participate in this kidney donation chain. Sadly, Barbara lost her first husband to an aneurysm due to PKD (Polycystic Kidney Disease, the same disease that Jeanne has) at the very young age of 25. You can learn more about Barbara from the comment she left on my previous post.

Karen, Barbara's daughter, also has PKD, which she inherited from her father. As has been the case with Jeanne, the disease has impacted her life at a relatively young age. Karen is now about the same age as Jeanne was when she got her first transplant. Karen has been very involved in the PKD Foundation and its activities - including being both a chapter coordinator and a walk coordinator when she lived in Utah a couple of years ago. You can learn more about Karen from the blog that she and her husband put together, or from this video I googled up last night.

Some interesting things I've learned from Barbara and Karen:

• Apparently, Jeanne was not the originally planned recipient for Barbara's kidney. Something happened along the way which made the original recipient unable to get Barbara's kidney, opening up the opportunity for Jeanne. Something similar must have happened in my case as well, as I was originally told that my kidney was destined for a "he" and it turned out that it went to a "she".
• It turns out that Karen and Jeanne both attended the same PKD Convention at Disney back in 2007. So, we were all within a few feet of each other just a few years ago!
  

It's been very exciting to get to know Barbara and Karen - and there is something about Karen and Jeanne both having PKD that seems to make it even more special. I guess because of everything I have seen Jeanne go through, I feel I can relate to what Karen has had to deal with, and it makes me very happy to know that she was able to obtain a kidney and avoid going on dialysis.

In the meantime, I seem to be improving. Best as I can tell, my infection is healing OK - I'll be back to see Dr. Del Pizzo on Monday to find out for sure. Yesterday was my best day yet since the surgery- I was able to make it though the entire day without even so much as a Tylenol. I can feel my energy starting to kick back in more every day and my appetite is getting back to normal. I'm still working from home, but am able to put a full day in now. I just need to keep reminding myself to pace myself, so I don't get too wiped out.

first post-surgery followup visit

Yesterday (Friday) was my post-surgery followup visit with Dr. Del Pizzo. I pointed out to him that I had been seeing an increasing amount of discharge from my incision over the past couple of days and wasn't sure if it was something to be concerned about or not. After poking around my belly button for a couple of minutes (ouch!), he informed me that I have a slight infection at the incision site. He subscribed some antibiotics for me and gave me some instructions for how to change the dressing covering the incision 1-2X per day. I'll be going back to see him again a week from Monday so he can make sure it is healing better.

So, it looks like it'll be a little longer before I'm back in action, unfortunately.

While I was down there, I did stop by the transplant clinic for a (very) quick visit with Marian. Since I stopped there first, I told her everything is going well (which mostly it is) and she was happy to see me up and around.

Later, after I was back home, Marian called and talked to Jeanne to let her know that her donor was interested in getting in touch with her. It would be very exciting to learn more about other people involved in this kidney donation chain.

tired of being tired

Sorry for not keeping up with the blog posts, but the reality is that there isn't a whole lot new going on around here. But, for those of you who are keeping up with our progress through these posts, I suppose I should be a little more diligent about reporting what is going on, even if it's "not much".

Jeanne and I continue to heal - but I have to admit that for me, at least, it is taking longer than I would like. On Monday and Tuesday, it really seemed like my energy level was starting to come back, but then yesterday I felt very wiped out much of the day. I seem to be finding myself often in a spot where I feel too good to do nothing, but not good enough to do anything - if that makes any sense.

Jeanne's followup visit on Tuesday went very well. They've told her she can already back down to one visit per week, which is great. A lot of that is because this is her second transplant, and she has already established a history of being a good patient - which means, most importantly, that she can be counted on to take all of the necessary medications. I find it such a shame to hear stories of patients who get a kidney transplant and then don't follow through with taking all of the necessary medications to keep that kidney healthy for as long as possible.

I rescheduled my followup with Dr. Del Pizzo from today to tomorrow, as they were predicting some snow/sleet/ice overnight and I was worried that I might not be able to get out of here this morning. Of course, none of that bad weather came - it's been all rain. So, now I need to hope that the amount of rain over the next 24 hours isn't so much that it makes getting back down to NYC a real hassle tomorrow.

the grass is getting greener despite having to deal with the septic tank

Well, Jeanne and I continue to heal up. I've been gradually decreasing my pain medication. At first I was stretching out the time between doses, then starting taking half pills, then switched from Percoset onto Tylenol. My last Percoset was on Friday and I've only taken four Tylenol all day long. And, I would have to say that I now mostly feel fine. I only occasionally get that "someone just punched my in the stomach" feeling now.

My energy level is up as well. I haven't yet made it through the day without a nap, but at least we are to the point where I can tell you how many I took today (two short ones). I made a couple of short driving trips for the first time today as well. And, this afternoon, Mom and Dad headed back home, so tonight is the first evening back on our own for Jeanne and I.

One thing I've learned about recovering from surgery: life is going to go on and not stop and wait for you to heal. As I mentioned a couple of posts ago, Brian managed to get strep throat. Thankfully, the antibiotics got him going again quickly and he was back in school on Friday (probably could have gone Thursday as well). Then, yesterday morning, what at first seemed to just be a partially clogged toilet soon turned into a overfull septic tank due to the leach fields being saturated from all of the recent snow melt. We were able to get the tank pumped, but are still getting some runback from the fields - and all of today's rain certainly is not helping. It's always something!

I'm going to try putting in some half days of work from home this week. I think I'm ready to handle that.

And, then Thursday is my followup visit with Dr. Del Pizzo (my surgeon) and the transplant clinic.

Thanks to all for the many cards, prayers, dinners, carpools, kind words, and other help that so many of you have provided us over the past 10 days. Jeanne and I certainly could not have done this without all of you!


*** 100 bonus points if you can name the author who inspired the title of the post and his/her relation to content of my blog.