Monthly Archives: February 2013
Dan got discharged from the hospital around 11:30 this morning. It’s like we were gone on vacation, there’s a bunch of laundry to do, our pets missed us and there’s no food in the fridge. 😊
The doctor told us his white blood cells and T cells are way low, so the medicine worked. Because his immunity is low, he shouldn’t be around anyone that is sick, so we will have to be super careful for awhile. If he got a cold, it has potential to be serious.
Dan is doing good. The only side effects from the horse ATG he noticed is fatigue, high blood pressure and high blood sugars. The last two are being treated with meds. All of these should settle back down now that he is not having the infusion anymore.
On Friday Dan got a call to check into the hospital at 4:30pm. They put him back in the IMCU (intermediate care unit) to get the extra attention that is required for this medicine. They started a trial/test dose and waited an hour to see if he had any reaction. The ATG medicine they tried is made from rabbit antibodies. Some people can have an anaphylaxis reaction (extreme allergic reaction) to the medicine. Dan didn’t have that, but he did have some severe back pain and spasms. They gave him some pain meds and muscle relaxant and that helped. The nurse and local doctor waited until Saturday to call UW to see what they wanted to do. UW recommended to try a similar ATG medicine that is made from horse antibodies. So Saturday afternoon they started that trial dose. The nurse was all ready for any kind of reaction, but Dan ended up not reacting at all. That evening, the nurse started the actual IV infusion of the medicine… finally.
The infusion takes 12 hours, with a 12 hour break. And they want to do three doses. It’s Sunday night and Dan just started his second infusion. They took blood today and will again tomorrow, that will tell them if its working. If it is, his white blood cell count will go way down, lowering his immunity so his body will stop fighting his lungs.
I’ve been balancing work, Jackson and visiting Dan. My work is only 10 minutes away, so that is nice. We decided I wouldn’t take time off unless he didn’t do well with the medication. I’m trying to be careful with my leave and trying to build it up in case I need it for the future.
Dan hung out in his room today and watched tv and read a little. Here is a shot of his room.
Well, Dan got discharged from the hospital tonight. The medication he was supposed to start is not normally in stock by the hospital. We believe that this wasn’t found out until after he was admitted. They have ordered it now and it should arrive Friday.
Saying we are frustrated right now is an understatement. Who wants to spend their days off in the IMCU?
So, Dan is at the hospital in Bend for a couple days. His UW doctor has been concerned that he might have chronic rejection. One of the numbers from the last few PFT’s (breathing tests) have been slowly declining. Dan has been noticing a slight shortness of breath on exertion lately too.
So, the Seattle UW doctor has been talking to his local pulmonologist about a medicine for Dan. They called yesterday to have him be admitted to the hospital for the treatment. He got the pic line in yesterday and the medicine is supposed to start today. Depending on how he does, he should be in here for 3-4 days.
The medicine they are doing is called ATG (anti-thymocyte globulin) and must be given in the hospital. It contains powerful antibodies and works by weakening his immune system (so it can’t reject the new lungs). Which will unfortunately cause him to be even more likely to develop infections for awhile. The medicine can cause side effects to make him feel crappy (during the first dose especially), such as fever, body aches and nausea. Hopefully he doesn’t get that too bad.
Jackson and I came this morning and had breakfast with Dan. Once they start the medicine we will have Jackson stay with Grandma.
We are still here, busy with regular everyday life.
I’m not quite sure what to do with this blog. I created it with the purpose of keeping family and friends updated with Dan’s health and to have as a journal for myself and Dan to remember what happened. Now that things are a little more stable, I don’t feel the need to blog every little thing any more.
So, I will still keep the blog active and post occasionally when I feel there is something of importance to journal/blog about.