i found the cure for diabetes....

I have found the cure for diabetes while living out here on the west coast....the cure requires you to leave your apt at 8am and don't come back till 5:30pm...what are you doing in all this time? Walking, walking, walking everywhere. I did have errands to run, dr's to see until 11am, so really it was only like 4 or 5 hours of walking, but ask me how much insulin I took yesterday, while I ate my ice cream, my hot chocolate, my pizza for lunch, my bagel for breakfast, and my sweet potato for dinner (all carbs and all usually requiring insulin) I took NOTHING all day. It was one of the nicest days ever not to get poked with every meal I had. My sugars all day long were 7.6 and 7.8mmol.
Take that diabetes, up your ziggy with a wa wa brush.

I went to the vancouver transplant clinic. They are really nice. Much smaller then Toronto, which I am enjoying since I'm impatient to get outside and do things, rather then sit in a blood lab, sit in a waiting room to see the dr. all this sitting around. I'm glad it's in an out. They see 6 patients a day in the morning. Super fast, compared to what I'm used to in Toronto.

In BC they've started practising putting all their patients on azithromax. I liked this idea immediately, since before transplant I was on azithromax for inflammation.
I have rejection...which essentially is inflammation. Why not go on azithromax to help stave off rejection? Hey if it was him, the dr. out here, he said he would want to go on it if he had a lung transplant. Why not try everything you can to keep these babies perfect, happy, healthy and pink?
So the acute rejection, coupled with this annoying nagging cough and little bit of sputum I've had, we decided to start me on azithromax. Perfect. Lovely.

My lung function yesterday was back up to 2.01liters. My WBC was back down to 8.5. My haemoglobin was at 105...the only thing I can complain about is my creatine, kidney function was running at 110. A smidge high for my liking.
Also for all you other cystics out here, my tac the last two weeks, they keep trying to raise it, but it's still staying at 4.7. Could it be the domperidone they started me on? flushing the tac out of me before it can get absorbed? Any thoughts, suggestions?

If you want to check out what we've been up to while being in Vancouver, head over to my non medical blog hattitude-hattitude.blogspot.com

Quick Update

Hey everyone,

I'm just going to do a quick little update here since I know people get worried when they haven't heard anything!

Hattie has been showing small improvements over the weekend. She was able to reads some messages on her blackberry and look at some photo from Saturday CFforCF carwash. Earlier today she was even able to go for a short walk with the physio (still attached to the vent).

Everything is a bigger challenge now because she has lost so much muscle in the week she was bedridden, but her mom says her determined, fighting spirit is back in action.

In more good news, they were removing the vent today at 2 pm--and hopefully she is DONE with that now!

There is still some fluid on the lungs, which they are dealing with, and the CT scan results showed nothing significant (infection wise)--a good sign. Her white blood cell count (WBC) is also coming down.

The next big hurtle will come next week when they try to sort out her anti rejection drugs (which were causing her a lot of trouble in the first place). Right now she on a 'temporary' drug, meaning she can only stay on it for two weeks. The docs have a good week to figure it out though, and it seems that Hattie is slowly coming back.

Cautiously optimistic, but baby steps in the right direction!

This was a hurried update, but I thought I'd let you all know. Keep sending those positive vibes!!

- Lindsay

The Secret World of Status 3

Hey everyone, this is Hattie's "cystic cyster" L.

No, Hattie has not got the call yet--we are still anxiously waiting on that--but our girl was simply too emotionally and physically drained today to update the blog herself, so I will be her hands and relay the messages she text me this afternoon.

Yesterday was very hard for Hattie and it wasn't any easier today. Clinic was surprisingly not busy and she was pleased to see the head honcho, Dr. T. And there it was confirmed: the new med combo is not working. Her pfts have continued to decrease and are now sitting at 15% and her WBC has risen to 20, from 17 last week. The doctors decided (and Hattie even messaged me this in anticipation of it happening) that she is 'rapidly deteriorating' and will be moved up to the 'secret' third status list.

Unfortunately, for now she must also stay in the hospital again, at least until they try a new drug combo and confirm it is working (they are trying piptazo and colistin). Following her last, er, memorable hospital stay, she was not too enthused but she also accepted that--realistically--it's not wise for her to go home at this point in time. On the upside, she is staying in my old room with the giant fridge and freakishly huge washroom and her Mom will be staying with her tonight. The entire fam jam will also be coming down for her Mom's birthday tonight too.

It's all very scary for Hattie and her family now, so they are asking for all your super-charged-positive-vibes! Let's start visualizing those new lungs!

- Lindsay