Catching Up, Part I

Wow! I can't believe it's been 7 months since I posted anything.  My apologies for that.  It certainly hasn't been for lack of information, but more just lack of discipline on my part.  I will start catching up in segments, since I'm sure no one wants to sit and read a 10 page blog all at once.

Let's go back to June 2012.  We made our big move to Houston in the middle of June and began to get settled in right away with the much appreciated help and support of my parents.  Kemarah was officially listed for cardiac transplantation on June 28, 2012 as a status 2 patient.  Status is important on the UNOS (United Network for Organ Sharing) listing as it can be a great indicator in how long you will actually be waiting.  There are 4 status categories used in UNOS:

Status 7 patients are inactive for some reason, meaning if they were to have an organ match, they would not be able to receive it at that time for some reason.

Status 1A patients must stay in the hospital on IV drugs, a heart assist device, a ventilator, or have a life expectancy of less than a week without transplant. For patients under 18 years of age, the indicators for 1A status may be slightly less severe.  1A patients have the highest priority on the transplant list.

Status 1B patients are not confined to the hospital, but require a heart assist device or some kind of continuous IV meds at home.  1B patients have the second highest priority on the transplant list.

Status 2 patients are basically any other active candidates that don't meet the criteria for 1A or 1B status.

We began our wait at the end of June in a status 2.  We were hopeful to stay that way for our entire wait, as it seemed like the criteria to have Kemarah's status upgraded would mean that she would be very ill.  We were perfectly content to keep our little girl at home, even if that meant we had to wait a little bit longer.

Kemarah's doctors agreed that they would see her once a month until we got "the call" or until her condition progressed to a point that they thought she needed to be seen more often.  So we went on our way--getting settled into our new apartment, learning the ropes of our new city, checking out things like the zoo, the aquarium, and of course, my favorite, the restaurants.

Kemarah went back to clinic the last week of July for her regular monthly appointment.  Everything looked "about the same" they said and sent us on our way with a 24 hour holter monitor that would record her heart rhythms for 24 hours.  We just had to return it the next day to be read and kept in her records.  We had done these holter monitors periodically in the past, so we really thought nothing of it.  We brought it back the next day, which happened to be a Friday, and went ahead and enjoyed our weekend.

It was the following Tuesday as we were sitting down to eat at one of Kemarah's favorite spaghetti joints that we got a call from our transplant coordinator, Kim.  She explained to me that Kemarah's holter report has shown some concerning rhythms and that we needed to bring her in to be admitted right away.  So we quickly gathered up our freshly served spaghetti and meatballs, went by the apartment so that I could throw some stuff together for an overnight stay, and headed to Texas Children's Hospital for the REAL beginning of our journey to a new heart.

The following link has lots of good info for transplant questions.  It's quite fascinating actually!

UNOS Info