Wednesday, July 29, 2009


Hey, Dad. We just got home this afternoon from Tucson.
Sorry I didn’t call you to let you know how things were going. Angie said that she would write to update you, but she is a slacker, so I will do it.

So, we got to Tucson and met with the financial coordinator first. The main thing that I got from that meeting was that our insurance is going to pay for the transplant as in-network. Yay and praise God! I cried a little.

Then we met with the transplant coordinator Sue. We love her. Next Angie had her treadmill test and EKG. They said she did really well on the treadmill test. Next we met with a social worker. Angie described herself as “angry and easily irritated.” I said “You get that from my dad.” Ha, ha, ha. Then they had me meet with a psychologist.

I swear she kept falling asleep while I talked so I guess that means there weren’t any red flags that I’m crazy. (I would have bet the other way.)

Finally for Monday she had a chest x-ray, some dental x-rays and only 14 vials of blood drawn. Poor thing. We went to stay with a guy Eddie used to work with in Riverside and his family.
I was nervous about staying with people we don’t know, but they are the kindest family and we felt at home there.

On the way to their house, the truck started acting weird. It wasn’t drivable. Eddie called and got an appointment at Firestone for 7 am the next day. Aimee was bringing Katlyn, Evie and Trevor out to be with Angie during her cath the next day.
She got up and took her kids to our friend’s house at 3:30 am to go and get the truck so they could take it in. They were all so tired. Angie’s cath was a nightmare. She was supposed to be gone for 1 hour and she was in for 2 hours and 45 minutes.

When I got to see her, she was crying and said it was the scariest thing in her life. She kept waking up during the cath and could feel them sticking her. They had problems finding a vein because she is so small. They ended up calling in a pediatric cardiologist to do it. They tried to go into a vein in her neck. They said they gave her enough medicine to knock out a horse and she must have a very strong tolerance.

We thought they were going to knock her out, but I guess they don’t. We weren’t happy and we’ll leave that there. In the meantime, Eddie was calling to find out about the truck and Firestone didn’t touch it until noon.

We weren’t happy that Aimee and everyone else were so inconvenienced to get it there by 7 so it could sit. We’ll leave that there too. So, the cardiologist said that Angie’s pressures are really good.

She doesn’t have a whole lot that he could see that was wrong. There were a few things and he could see where her heart was thick, but she is in pretty good shape.

There is a pro and a con to that. Of course the pro is that she is doing well. The con is that if they feel that she doesn’t need a transplant immediately, they will not list her until she is really sick. They only list people who need a heart now. She WILL need a heart. It is just a matter of when they feel she is in immediate need. Doesn’t that suck?

Sue told us that they will meet on Friday to discuss Angie and make a decision as a team. Normally we would have to wait to see the team (August 13th) to find out the decision, but she said she would call us. See? We love Sue.

We went back to Jon and Jessie’s and Aimee got my kiddos home safe and sound.

Today we had an echo and we came home. It is Eddie and my 14th anniversary. OK I am going to give you a link to check out some pics of our vacation. Angie has a pretty stinkin good eye. We’re having a contest on Facebook to see who gets the most votes for best photo. She might win.

Love to all!

-Mel.
Vacation Photos

2 comments:

  1. That all sounds good and bad! WHY oh WHY didn't they knock her out for that cath! Poor girl!!!!!

    It's great to hear her pressures are good!! Does she have an enlarged atrium from the RCM? How big is it now?

    It is so hard and makes no sense WHY she should have to wait for a heart, because I know in our story it feels like the early diagnosis was a blessing- God protecting us from finding out in a more tragic series of events. But then again if she has some time to enjoy being herself with no meds or immunity issues, thats a blessing as well!

    ReplyDelete
  2. Kristi, I agree. I have been relieved that she seems to have been diagnosed early. It seems a waste to wait until she has deteriorated. It is understandable though that people who need it more should get them first. I worry about the possibility of a double transplant. My husband wants to put off the transplant as long as possible. He feels like she is better off with the heart God gave her and he knows it's a rough road after. I don't know about her atrium size. No one has said anything to me about it being large. She has some thickening of her heart muscle, her pressure when her heart is expanded it's fullest is high, and her blood ouput is low. We will see what happends on Friday. She sees the electric physiologist on Friday too to see about fixing her SVT. Anyway, God's will be done. ;)

    ReplyDelete