Taking You to Transplant School 9/25

Friday, September 25, 2009

Two weeks ago today, Bethany went to the doctor because she thought she might be getting the
flu. The events since that day all still seem so unreal! I hope today's update doesn't sound too
much like a Transplant 101 lesson, but I have a lot of information to share tonight.
This morning, our new buddy, Cindy Goat (her real last name is Cassidy) came in to tell Bethany
that they have "listed her", which means she is now active on the list for those looking for a new
heart. There are 3 levels on the transplant list. A 1A listing is for the patients with the MOST
critical need. They are probably in the Cardiac intensive care, have cath line in the heart for
continuos monitoring of pressures, or require 2 different IV drips to maintain the cardiac
function. A level 1B means that a continuous IV drip is required to maintain cardiac function.
These patients can wait at home, with an IV drip infusing via a portable pump, and perhaps
other oral meds, as well. There is an additional requirement that the patient have a implanted
defibrillation device, called an ICD, to "shock" them out of any lethal rhythm that might kick in.
The last level is a level 2. These patients are able to function at home, with activity and diet
restrictions, with only oral medications to maintain cardiac function. Bethany was listed as a 1B.
The plan is to treat her this weekend with the exact meds they would like to send her
home with, that being the primacor IV drip, the digitoxin, and the captopril. Dr. Mandras is off
until Tuesday. If Bethany does well over the next 4 days, the physician team, Bethany and Zac
will make a decision about whether or not they are all comfortable with the idea of her going
home to Irvington to wait for her new heart. If she goes home, they will place a PICC
(Peripherally inserted central catheter) line, and implant the defibrillator, then send her home in
about 24-48 hours. Kind of scary for all of us, but, this is a very common practice in these
situations. So...all that being said, since Dr. Mandras is off this weekend, another MD will be
covering. That will be Dr. Ventura, who happens to be the head of the department. He amy
have a whole new approach, once he reviews her case. Don't be surprised if all this goes out the
window tomorrow. I have learned over the past 14 days not to count on anything remaining the
same for very long.

How is a heart matched to a patient? In most cases, matches are made based on blood type,
and physical size of the heart itself... In Bethany's case, there will be one more step taken.
When she was a newborn, she had to have a blood transfusion, which means she has some
antibodies circulating in her blood that could make rejection of the new heart more likely. So,
when notified of a possible heart, staff will draw blood samples from both the donor and from
Bethany. These two samples will be mixed in the lab, to see if Bethany's immune system will
accept the donor heart. The bottom line here is that it may take longer than normal to find an
acceptable heart for her. If her condition starts to deteriorate, she can be bumped up to a 1A,
but, they would rather leave her as a 1B as long as possible, for several reasons. First, you can
only be on the 1A list for 30 days. We are not sure whether that means 30 consecutive days,
then drop down, and be listed later as a 1A, or if that means 30 days total. We do know that
doctors can petition for additional A list time.. Second, every day on the transplant list earns a
point. The more points you have, the higher on the list you become. So, if she can stay on the
B list for a period of time, and needs to be bumped up to the A list, she will be a higher priority
than she would be if listed as an A now. I hope that makes sense...

Finn was worn out after the party day. He slept nearly 12 hours straight, with only a 30 minute
wake time to take a bottle. He has certainly enjoyed the Happy Birthday and Get Well balloons.
He even seems to have figured that if he waves his arms just right, he can make those balloons
dance:-) OK...never mind. He is now holding the ribbon on the balloons in his fist, and really
making them dance. Not bad for a 9 week old! Kim got here around noon today, and Kylee is
going back to Texas tomorrow. Some of Cheryl's co-workers are coming tomorrow to visit.
Kim, Zac, Finn and I plan to go back to Mobile on Sunday. Finn needs his 2 month check up,
and some immunizations. Zac needs to go to work, so he does not use all his sick time. Zac is
not at all happy to be going home and leaving Bethany here, but he is trying to do the right
thing, difficult as it may for both of them. Zac has a lot of little things to check into as far as
disability for Bethany, insurance issues, and so on. Kim will go back to work, and my plans are
to help Zac with the baby at night, then work as much as can, during the days and evenings, as
this is going to be a long, hard road. As wonderful as my employer has been, I want to carry my
load as much as I can, when I can.

With my usual thanks for the prayers and well wishes...and believe me, I do not write these
words lightly; the gratitude I feel for the multitudes of prayers is boundless, I want to thank
everyone for all the Birthday cards, flowers, emails, and happy wishes Bethany received. That
incredible young woman told me that this was one of the the best birthdays ever. Even being in
this unimaginable situation, she felt so much love and hope that she feels more blessed than
ever. What an attitude! She is an angel!

One more brief thing, and I promise to stop typing. Last night, I commented that I had noticed
that phone calls tend to wear on Bethany, and I suggested using Facebook and email to
communicate with her. Today, her physician caught me in the hall and suggested that I ask
everyone to refrain from calling, and use email, etc to communicate with her. She stated that
way, Bethany could communicate when she feels like it, not use any energy trying to talk on the
phone, when she needs to rest. I think we all noticed how tired Bethany was last night. I also
guess Dr. Mandras decided I don't mind being the bad guy, when it comes to doing anything
needed to help Bethany maintain! Wonder if I have something to that affect tattooed on my

God Bless!