I am updating as Maddy takes a little nap following her heart catheterization. We are on the last day of the two day marathon work up. We had to be at the hospital by 6AM both days. Yesterday they did most everything on the list. Today we finish up with the heart cath and the last few consults. Here is the list... (photo on twitter)
Consent for transplant - simple signature.
HIV consent - another signature.
Labs - 12 tubes of blood, this included all her tissue typing, urin, and a sputum sample
ABG’s - Arterial Blood Gas, this is where they stick a long needle in the artery on your wrist and check the oxygen level of your blood.
EKG - heart test
CXR - not sure what this one was.
Stool sample - eeew!
Place PPD - this is the under skin TB test where they inject a bubble of liquid under the skin of your forearm and look at it three days later to see if you have a reaction.
Bone Density -scan her hip and a part of her spine to check the strength of her bones. Done with an X-ray type machine.
Abdominal Ultrasound - checking her liver and kidneys.
Echocardiogram - heart test
PFT’s - they did regular room air PFT’s and they put her in the chamber. The chamber gave her a little anxiety.
6 minute walk - they let her walk at her own pace for six minutes and see if she runs out of breath. (I hear the tortoise would have won)
VQ Scan - this is a lung scan. They injected her with a “slightly” radioactive material and watched it move through her lungs with a scanner. (photo on twitter)
Cardiac Cath - is the passing of a thin tube (catheter) into the right side of the heart and the arteries leading to the lungs to monitor the heart's function and blood flow. (photo on twitter)
Consults:
Thoracic Surgeon - need to meet today
Social Worker - met a few weeks ago
Dietician - need to meet today
Lung TX Pharmacist - met yesterday
Psychology - met a few weeks ago
Ansthesia - need to meet today
GYN - because she is a woman now
So that’s what we have been doing the last two days. I had to work yesterday so I was here with her until a little after noon then her mom came and hung with her the rest of the day. Maddy has been staying at my place because we have to be here at 6AM and it’s easier for me to get her here that early. I pre recorded my shift today so I could take the whole day to be with her today. I was not sure when they were going to do the heart cath and didn’t want to risk not being around for that.
After this her case will be presented to the lung transplant decision makers and we will get our answer. Her case goes in for review on April 14th and Kim, the lung transplant coordinator, said she will call Maddy that afternoon with the answer. We have three possibilities, No, Yes, or Later. Later would be the answer if something irregular comes back from one of these tests that they have to address before they can transplant. Of course we are hoping and praying for a YES!
Thats it for now. I’ll keep updating on twitter and FB as time permits.
