Leaky valve and heart transplant talk
The leaky valve is manageable, improved even. Maybe just the slightest bit, but that ever-present leaky (AV canal) valve is a little better now than it was 6 months ago.
A little better is better than a little worse. So, how much it has improved doesn’t really matter to me. The severity of its leakage is subjective to the observer, anyway. But, if you must know, Justin’s cardiologist labeled it as mild to moderate.
This was the highlight of our routine visit to see Dr. Rebolledo, yesterday, knowing that Justin’s heart is checking out “stable.” Even if it’s not perfect, but it could be stable forever and ever and ever…that would be perfect!
The remainder of our discussions revolved around heart transplants and seeing other specialists for Justin’s “other” heterotaxy issues (i.e.; asplenia, GI tract malformations).
As always, the recommendation stands that living with his own heart for as long as possible is more favorable than receiving a heart transplant. But, this is my cardiologists’ recommendation (though he is not alone on this).
If I were to ask Dr. Leonard Bailey at Loma Linda University, he might say otherwise. Check out this article dated back to 1990 that includes an interview with Dr. Bailey on the issue of infant heart transplant.
I realize heart transplanted children have their risks, especially with having to be on immuno-supressent medications. I found an article that gave me a better view into the life of a heart transplant receipient, also dating back to 1990.
However, my Googling has failed to find me any recent articles on Dr. Bailey and his views on heart transplants. The latest info I found on him was in a back issue of Glamour dating May 2007. There was a feature article on a young woman named Leilah Dowsari who was the second infant at Loma Linda University to successfully receive a heart transplant, but the first female infant ever to survive it. She was 21 when the article was published. She received not only 1, but 3 donor hearts. The first lasted for 14 years, the second only 3 years, and the third is still keeping her alive.
I’ve also read about Nicholas “Eddie” Anguiano, then called Baby Moses, who underwent a heart transplant at Loma Linda University. He was the first male infant to receive a human heart transplant and is, now, also 22.
Remember, these young people underwent a procedure that was incredibly new at the time, back in the 1980’s. And, think, how much technology has changed to better the lives of those who must undergo transplant, now.
These are, of course, not medical reports that I’ve read, but, insight into the world of heart transplantation.
One reason I think Dr. Bailey may not seem so vocal about his views on heart transplantation anymore is 1) he’s getting older, thus having less motivation to put his family and his personal life in jeopardy when presenting this possibly controversial view about transplant 2) the three stage procedure and it’s survival rates has improved dramatically in the past 15 or so years that it may benefit the patient to just live with his own heart (as noted in this medical article about heterotaxy and the Fontan), 3) heart transplantation is such a “norm” now that it does not create enough “buzz” in the media.
Justin’s cardiologist is optimistic that Justin has a survival rate of 15-20 years before we will discuss transplant. That’s a long time. Too long for me to even think about. I’m still trying to hang on to him by the day. And, in 20 years, will his body qualify for a heart transplant with all the blood products he received, scar tissue, being an asplenic…But, hey, 20 years is more than 1, or 2, or 5, or 10…
Anyway, I should know by now that life cannot be planned, predicted, premeditated. Sure, we’ll live our lives each day, making plans on how to live it. But, ultimately, what lies ahead is something we cannot conquer until we get there first (as said with such confidence by a person who’s not there, yet. Ha!)
We’ve come this far, baby, and we’ll keep going.
Justin at his first birthday, um, banquet. Mama really outdid herself.
September 4th, 2008 at 12:46 pm
That is all heavy stuff to process. It’s hard not to want to look ahead because we all want to spend a lifetime with these special little babies. 20 years from now, let’s hope there’s an even better option and Justin can live 100 more years!
That cake is adorable. Elijah would love the lion! Looks like Justin is ready to dig in.
xoxoxo
September 4th, 2008 at 12:47 pm
Our son Billy was born on Jan 22, 2008 with heterotaxy. He had multiple heart defects and received a heart transplant in Atlanta on Feb 21, 2008. He is doing great. You can read our story and see pictures at http://caringbridge.org/visit/babyjohnson1. Billy has many of the same heterotaxy issues Justin has: asplenia (Billy has polysplenia with functional asplenia - he has many small spleens that do not work), possible malrotation of the bowels, no gall bladder, bronchomalacia. The heart tranplant is probably the best thing that happened to him - we were headed down the Fontan path also but Billy also had complete heart block and a birth heartrate of 50 bpms so we had to transplant.
September 16th, 2008 at 6:57 pm
Jen,
I just did my rotation at the Duke Adult Congenital Cardiology Clinic. I have met middle aged men and women who had survived BT shunts (even 1 who had it done by Blalock himself!) and Fontans, and now are living normal adult lives, walking 3 miles a day, with families and healthy children of their own. I know that there is more to Justin than just his heart, however I can’t help but think of you and Justin when I am in this clinic.
Love,
Lisa