Saturday, December 22, 2012

A New Normal

A LOT has changed for the Haines family in the last year.

We found out in August that Evan was in kidney failure. He started on dialysis the next day and has been going through dialysis 3 days a week since then. He suffers from a rare genetic disease called Nephronophthesis. The doctors suggested we have the other boys tested. I added it to my list of things to do...

By October we were settling into a routine when I brought the kids to the lab and had their blood drawn for the test. The next morning at 7:30am I received a call from the pediatrician. Garrett and Noah were clear, Eli's blood work was not normal and he wanted to repeat the test to make sure it wasn't an abnormality. We returned to the lab and blood was drawn. The test was confirmed. Eli is also suffering from kidney failure. The Nephrologist called me at home and told me that there was a bed waiting for Eli at Levine Children's Hospital. We packed our bags (knowing this time what I would and would not need to bring) and headed to LCH.

Within the week we had two boys on dialysis every Monday, Wednesday, and Friday morning.

THIS is our new Normal.

There is a whole new vocabulary that comes along with a chronic disease.  Hemo-dialysis, Perm Cath, dry weight, fibrin sheath, BUN, hematocrit, binders.... you get the idea.

The thing that still gets me is that I know more about the disease my boys have than most doctors.
Nephronopthesis is really rare. Our Nephrologist said for him to see one case in his career was rare, but to see two was unthinkable.

This disease is caused by combining two recessive genes both Bryant and I carry.  The odds of our children getting the disease is 1 in 4. We had to go the extra mile!

So what does all of this mean for our boys?

Kidney Disease is treatable but, NOT curable. -- My boys will have this disease the rest of their lives.
Dialysis is keeping them healthy until they can receive a transplant.
Bryant and I are just beginning the testing to see if we are suitable donors for the boys.
Once a transplant is performed the boys will be required to take many pills a day to prevent (slow) the rejection of the new kidney.
The "new" kidney will likely only last 5-15 years. At some point the boys will have to start dialysis and wait for another kidney. Luckily for them they have a big family... two brothers, lots of cousins.

Another thing we're learning about is what's covered by insurance and what's not. We're full swing into our fundraising efforts through

If you'd like to learn more about kidney disease go to


The Tedrow Show said...

When we lived down in Charleston I was a kidney transplant coordinator for almost two years. I've seen and helped patients with the same disease as your sweet boys. They are lucky to have such a spectacular mom (and dad) who will love them no matter what and help them realize that their "new normal" doesn't make them less special than anyone else. Let me know if there is anything I can do to help!! Stay strong mama!

DeeDee said...

My daughter is 13 and also suffers from nephronophthisis and had a kidney transplant just over a year ago. I can't imagine handling two kids with this problem, but we did our dialysis at home daily. God bless - it's not an easy journey, is it? But I wouldn't trade being my Babygirl's mom for anything!