We still don't have an answer about whether our friend is a match. 8 days after he was evaluated, we get word that the MRI images regarding the bile ducts are unclear and additional imaging is needed regarding the arteries. We were told that our friend would need to undergo an MR-A and a CT angiogram. Huh? What? Both of those tests would be looking at arteries. So, I politely ask if they really need an MR-A and the CT angiogram. I get a curt response confirming the tests. I ask again and get an even more irritable response.
It'd been a long week at work, so I tell the nurse coordinator to excuse my stupidity, but let's start from scratch. Why would they need to do an MR of the arteries if they were going to need to do a CT anyway? The nurse coordinator then says that they will be doing an MR-C, to look at the bile ducts, and the CT to look at the arteries. Okay, that makes sense, but it would have been nice if you'd said that THE FIRST TWO TIMES I ASKED! (Yup, I'm a little irritable with these folks after they unnecessarily cut Kirk open and their stupidity, poor personal skills, and extremely slow response time is not helping my mood towards them in the least.)
To make matters worse, the geniuses at NMH waited until after the end of the business to share this information with us and were unable to give us any additional details about when the follow-up imaging studies can be performed.
There were a few more frustrating parts of the conversation, and a lot more condescension from the nurse, but the relevant information is that we still don't have a living donor candidate for Jaisal. With the Thanksgiving holiday looming, even if we find out next week that our friend is a match, we've been told that surgery would not get scheduled until after the holiday.
This is sadly reminiscent of last year, where Jaisal spent a significant portion of the time between Thanksgiving and Christmas in the hospital with an episode of cholangitis. We were able to break free of the hospital just in time for Christmas last year. I'm hoping we have similar luck this year.
1 comment:
My husband also did those exams, they told us it was part of the protocole. Maybe this time your team wants to make sure they are doing everything first, before opening someone else? I hope it´s just that and Jaisal will be getting his new and pink liver soon.
The waiting it´s very hard, Martim´s transplant was postponed 3 times, I was going crazy! I mean, we had a donnor, we had a date, that´s just what we need, right? Wrong. they need to make sure they have beds available in the operating room, in the PICU, ICCU and in the ward, for both of them, they need to have 2 surgical teams, two medical teams ( onde for the baby, one for the donnor), it all takes alot of resources... But for us it´s very hard to wait!
Praying for the perfect liver to became available soon so that Jaisal could live a healthy life!
Alice
( Martim´s mum)
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