Monthly Archives: November 2011
Well, we finally got out of the hospital last night, rushed to Walgreens before they closed at 6pm and went home to pack.
The night didn’t go very well, Dan was having a hard time breathing. Then we headed out for Seattle at about 8am. It was a very long drive. It rained most of the time in Washington too. Dan still wasn’t breathing and feeling well, so it was hard on him. We decided since he wasn’t doing very well, that we would go straight to the University of Washington emergency room. (The plan was to stay at his uncles house for the week and go to the transplant appointments like normal.) The ER visit was good, they got him right in and helped him feel better with some pain meds and a steroid shot for his breathing. The doctors admitted him and so tomorrow they will need to figure out how to continue all the pretransplant appointments.
Here is a picture of us in the ER room. Dan kept his oxygen on for the picture this time.
We are still waiting to get out of the hospital. The doctor hasn’t come in yet. It sounds like, from the nurse, that he basically wants to keep Dan here as long as he can today. Dan is ready to go home and relax before we head out in the morning though.
Here is a picture of Dan a couple days ago. He took his oxygen off for the picture. He doesn’t like me taking pictures off him much right now…. Well I guess he doesn’t normally like me taking pictures of him, but it’s a little more than normal. Which I understand who wants pictures taken of yourself when your sick. I tell him it’s so in a couple years from now, we can look back and be thankful for the new lungs he will get.
The plan is to go home tomorrow. Dan saw a pain management doctor today. The doctor had new ideas to try to manage his rib pain better at home. Hopefully they work well. One thing the doctor did was give him lidocaine numbing shots into the muscle where his ribs are sore. He also said to try physical therapy when we get back from Seattle. I’m happy and hopeful that a pain management doctor got involved.
It’s the night before Thanksgiving. Dan and I are hanging out in the hospital.
I brought Dan in Monday. He was having some increased shortness of breath and more pain in his right side. The doctors increased prednisone and gave IV pain meds to help control his pain. He is feeling a lot better today.
We are ready for Monday to hurry up and come, so we can be in Seattle talking to the transplant team. We are anxious to hear what they have to say and hopeful that it is good.
We are starting this blog to keep family and friends better updated about what is happening. Our hope is the blog will make it easy for everyone to know first hand what is going on. I also want to make it a journal for this current journey.
A little bit of our story…
Dan was born with cystic fibrosis (CF) and was first diagnosed with it as a baby. He didn’t have many complications with it growing up. He has to take enzymes with meals to help digest his food, but that was basically it. He had a normal childhood. Went to college and played rugby. Got a job as a firefighter/paramedic. We got married and started a family. He would have an occasional, typical CF lung infection and would need to take a short period of antibiotics and then bounce back fine. Other than that, you wouldn’t know he had CF.
We decided I would quit my job to stay at home with our son. Dan worked 2 days on and had 4 days off to spend with us. We had lots of fun and enjoyed being able to spend so much time together. Life was good.
Then the month of October 2010 wasn’t a good one. Dan’s brother, Jeff, got sick with a brain infection and died towards the end of the month. That was very difficult. Then in the middle of it, Dan got a lung infection. It was difficult to diagnose, so it took awhile to get the right antibiotics for him. This time he didn’t bounce back.
Since then, he quit his job and I went back to work. The doctors agree that Dan’s main problem is a bug called mycobacterium (MAC). The MAC has become resistant to the antibiotics Dan is taking, so it’s not going away completely. Because of that, it’s damaged his lungs pretty bad. His breathing capacity is very low. So, he is now going through preliminary tests for a double lung transplant.
The closest hospital that does lung transplants is a little over a 5 hour drive to Seattle Wa. The doctors up there have helped move the process along and we are going up there Nov 27th for 4 days of tests and appointments. Our hope is that after those 4 days, they will put him on the transplant list.