Social Icons

Wednesday, December 25, 2013

From the Health Desk

Happy Update Day!

As with seemingly everything in Cliff's life we have mixed news. Here's the great news:

Cliff's heart is doing really well.

You probably know that back in March Cliff had open heart surgery out in Houston, Texas. Dr. Fraser opened up Cliff's pulmoary artery (coming from his right atrium and going out to the lungs - see the light purple diagram below) and patched it so that it would be wider and hopefully able to handle higher volume and thus reduce the pressure.

Prior to surgery, the pressure on Cliff's right side was 110% of the pressure on the left side.  For normal people you would hope to see it be somewhere around 30-50%.  The result of such a high pressure is that the heart on the right side has to work so hard that the heart wall begins to thicken and get stronger. For biceps, your muscle getting stronger and thicker is awesome. For hearts, not so awesome. The muscle thickening leads to congestive heart failure.

The goal of the surgery was to reduce the pressure on the right side.  And that happened in amazing fashion.  Cliff's post surgery pressure is now 70% of the pressure on his left.  We are grateful for the signficant change.  It is impressive, not just to us but to our doctors as well.

Long term, we still aren't sure what this new number means as it is not a permanent fix.  But our cardiologist tells us that Cliff's heart is in a much better condition now and that ususally correlates to more time.

And that's where we get to the less great news:

Cliff's liver is not doing as well.

When Cliff was still very young and we had just started treating his heart and liver issues, Cliff was placed on several medications to help with the overall itchiness that comes from his liver disorder.  They worked great for a long time, about a year and a half.  But as is normal for many kids with Alagille syndrome, the medicine lost its effectiveness.

Cliff's doctors have tried other medications but nothing has curbed Cliff's itchiness.  Thus, the next step is surgery.  And that will likely come quickly.  Quickly meaning December 26th (as in tomorrow).

The procedure is a test procedure of sorts.  In about 6 weeks we should know if the procedure will work on a more permanent basis or not.  If it looks like it will work, this could be a good step in curbing Cliff's itchiness for a while.  If it doesn't work the next step is either to try to wait it out or opt to do a liver transplant.  Oddly enough, many Alagille patients have a dramatic drop in itchiness at around their 4th birthday.  Of course, that is still more than 2 years away if it happens at all.  So we'll see.

At the end of the day we're just grateful to have our fun little Cliff with us!  He's awesome.

We promise to post more pictures soon!


Post a Comment


Huge Thanks

We are so grateful for all the wonderful people who have helped us, are are helping us through this experience.

Our families have been great support systems for us and have given so much of their time and their talents to benefit Cliff.

We also have so many good friends who have given way more than we could have possibly imagined, sometimes a moment's notice.

To everyone we offer a heartfelt thanks! We really, truly could not do this without you.

An Inspiring Thought

Here's one quote that inspires us.
"There is no growth in the comfort zone; there is no comfort in the growth zone."
If I could figure out who to attribute this to I would, but the Internet isn't quite sure who said it.

Contact us

Need to get a hold of us? Have a question? Want to talk about how the Tottenham Hotspurs are doing? No Problem!

Just email us at