In search of a kidney

The post below is taken from Facebook about a boy named Stephen with ARPKD who needs a kidney. The post was written by his aunt.

 

“In Search of Miracle #2 As many of you already know, my nephew Stephen was born 1 year ago with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my sister’s 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle – and Stephen Charles Schwartz came into this world crying (and breathing!) and fighting for his life with fierce determination. At 5 days old he had BOTH of his kidneys removed. My sister, Lindsey, and brother-in-law, Bill, have been caring for him at home since he left the NICU at about 60 days old. They are true warriors who do everything imaginable for their beautiful son, including his extensive 24/7 medical care. Today, the doctors at Children’s Hospital of Philadelphia (CHOP) gave Lindsey and Bill some amazing news – they gave Stephen the go-ahead to be placed on the active transplant list to receive his first new kidney. However – the difficult part is that the doctors VERY STRONGLY suggest that a child of his age receive an organ from a living donor. This helps to prevent a multitude of problems including rejection and infection. As fate would have it, Stephen’s blood type is O Positive. No one in either of our families is O+. So……this brings me to the eventual point of this whole long post, which is that we are left to find our own donor. I’m hoping that by passing on our plea and asking all of you to please pass it on, that we might find someone who has given thought to giving the gift of organ donation. Any one of us in our family would happily repay the favor and donate one of our kidneys to another person in need. If anyone is even remotely interested in being tested to see if they are a match for Stephen, they can contact Lindsey directly at lschwartz531@gmail.com or anonymously through the hospital. The hospital transplant coordinator is Joanne Palmer at CHOP. Her direct number is 215-590-6778 and her email address is Palmer@email.chop.edu. All of the information given to Joanne is completely confidential (HIPAA) and if the person is not a match, they don’t tell us why. Just that they’re not a match. And if it does work out, Lindsey and Bill’s insurance pays for everything…including housing, meals, travel expenses and all of the doctors bills. THANK YOU from the bottom of my heart to all of you who have taken the time to read this and pass it along. If you would like to learn more about Lindsey, Bill and Stephen’s story, feel free to read Lindsey’s blog, which she started the day of Stephen’s initial diagnosis. The website is http://stephens-journey.blogspot.com/. Our best wishes to all – Jess & Kevin Sweigart”

 

Monday Memories

In June of 2006 Matt and I attended our first PKD Convention in December just three short months after we learned Gabe and Max had ARPKD. To say the least it was a very overwhelming experience. But we are so thankful we went. We met many wonderful moms and children with ARPKD and also the most amazing doctors!!!

The thing I remember the most about the weekend was the first morning we went down to the breakfast buffet and sat at the table next to Julia Roberts (the other Julia Roberts – the really important one in my life) www.kidneysandeyes.com. As we sat there I looked over at her table and saw this carrying case she had full of medications and I thought to myself wow her kids must be so much more severe than our boys. It was full of bottles and syringes and all kinds of stuff. Now on the spectrum of things yes they do have a different mutation then we do. But here we are six years later and the picture above (which I hope comes through) is all of the bottles of medications the boys are currently taking. Three of the bottles are for Max and six are for Gabe. Max takes 5 pills a day and Gabe takes 9 pills a day. Wow!!!!! And the organization of all of these medications is to say the least slightly overwhelming.

So for my Monday Memories I wanted to post my memory of Julia and that weekend in June so long ago. And how grateful I am to have her in my life for so many reasons. First and foremost to be my friend, but also my mentor and teacher with this disease. And especially my go to person when Dr Google doesn’t always have the right answers. Because I know Julia always will. Thanks for everything, Julia!!

Things to be thankful for

I cannot believe I never wrote about things to be thankful for in 2011. So here goes:

1. My boys (all four of them)
2. My health
3. Our house
4. My job
5. My husband’s job
6. Our health insurance
7. Nate’s health
8. Even though the boys have high blood pressure that there is medication to control it
9. That the medication is working to control their blood pressure
10. My parents
11. My siblings
12. My friends
13. Most of our doctors
14. We have access to good doctors and good medical institutions

It Could be Worse

So my friend who writes a blog wrote one a while back and said her friend suggested it would be a good idea to write a “gratitude list” to help her look at the world more peacefully. I’m stealing this idea because I love it and the sarcasm of it all is perfect!!!! Here goes:

1. I’m glad that even though my kids have ARPKD they have good kidney function

2. I’m glad that I at least have one son out of three with good kidneys

3. I’m glad that Gabe only takes 3 blood pressure medications and not four

4. I’m glad that both boys can take pills for their blood pressure and not the liquid

5. I’m glad that we live in NY and have good doctors available for this kidney crap

6.  I’m glad that I only have to take Gabe to one specialist appointment in February rather than two

7. I’m glad that even though our insurance now has a deductible and 25-35 dollar copays that we actually have insurance

8.  I’m glad that I only have to work part time rather than full time

9. I’m glad that Gabe only sees 6 specialists and not 7

10. I’m glad Max only has cysts in one region of his kidneys, unlike Gabe who has them in both

11. I’m glad even though Gabe has “sludge” in his gall bladder he doesn’t have gall stones

12. I’m glad that even though we have to go into the city for our doctors I like 5 of the 6 specialists

13. I’m glad I’ve met other ARPKD moms, even though the only reason we met is because our kids have ARPKD

14. I’m glad I didn’t become a nurse but still know how to take the boys’ blood pressure manually

15. I’m glad I have my boys, even with their crappy kidneys

16. I’m glad I’m writing again, even though at this point it’s only about the boys and kidneys!!