Monday, April 4, 2011

followup #3

I had another followup visit with Dr. Del Pizzo today. He's happy with how the wound is healing. I will need to continue to pack the wound on a daily basis, though, and probably will for quite a bit longer. Apparently, I will need to continue to pack and cover the wound until my belly button gets back to a normal belly button depth. I guess I had been assuming that I was just going to have this fairly deep belly button for the rest of my life, but I learned that eventually it will work its way back to a normal size. At the moment, it seems like it's still quite a ways from normal size, even though it has progressed quite a bit over the last two weeks.

I continue to have my up days and my down days in terms of energy level - although as time goes on the ups are higher and the downs aren't as low. I was able to get through a 90 minute baseball practice yesterday with the baseball team, but was pretty wiped out in the evening. Dr. Del Pizzo said that I am free to do pretty much anything that my body feels up for at this point - the only things to avoid are activities that stress the abdominal area.

I will still need to see Dr. Del Pizzo at least one more time. I'm to email and/or call him with my progress in the next week or two. Depending on what he hears from me, he'll either have me down again right away or wait a little while longer to see how things continue to progress. If all goes well, it will be just one more visit to check things out after it is all healed.

Saturday, April 2, 2011

A week without a doctor's visit

Yes, it is true. My family managed to make it a whole week without a single one of us visiting a doctor! No clinic visits, no surgeons, no lab work, no visits to the ER, no nephrologists, no sick kid visits to the family doctor, no hospital stays, no dentists, no eye doctors, no chiropractors, and, of course, no dialysis!

Now, to those of you who lead relatively healthy lives, this may not seem like a big deal to you. But, I can tell you that this has not happened in our house since the last week of May, 2010 - almost a whole year ago! I know this because with the overwhelming number of medical bills and insurance paperwork we get at our house, I find I need to use a spreadsheet to keep track of which bills have been paid, which ones haven't and which ones the insurance company screwed up. My spreadsheet for 2010 has 222 lines in it - thanks to four ER visits (three of which resulted in hospital stays), two fistula surgeries (one inpatient, one outpatient) and a whole host of dialysis sessions, all piled on top of the more routine medical visits.

I guess the most important factor in this momentous event is that Jeanne is down to followups at the clinic once every two weeks. One reason for this is that everything seems to be going great with the new kidney. Her creatinine levels are superb and it looks like the new kidney is going to work great for Jeanne (thanks, Barbara!). The other reason is that Jeanne has been through this before, having had her first transplant back in 1998. She's been following up with the same doctor at the same clinic for 13 years now. They know her and they know they can count on here to do the things she needs to do to keep the kidney going strong - most importantly, taking her medications at the right times and right dosages.

So, for me, this is a big deal. And the best part is that as time moves forward, I can look forward to more and more such weeks thanks to a wonderful sequence of events that allowed us to become part of a kidney donation chain that never would have been possible even a couple of years ago.

Friday, April 1, 2011

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
Registration Costs: $15/person or a Family Package of (4): $50.00
Includes a light lunch and beverages (coffee/tea - regular and decaf, water)
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!