Saturday, 13 December 2014

Hello from ICU!

Hello all! It's me!! I have a few quiet moments this morning so far so thought I would type slowly out on my phone. Amy has done a fantastic job keeping everyone updated as to what's been happening medically.

ICU is quite the place. I woke up after 5 days of being completely out. I know Amy and family says I gave hugs and whatnot earlier but I honestly remember zero of that. I woke up lucid for the first time at night very confused wondering if the surgery had happened and what was going on. Thankfully my night nurse explained it to me that I did have a surgery and then they had to go in a second time because of the bleeding in a lung but that things were good. I've never been so relieved in my life. Waking up alone and confused is not something I would recommend. I'm still coming to terms with the fact that I have new lungs. It's not something that sinks in over a few minutes.

Being in here, I've honestly never felt so helpless in my entire life. When I first woke up I needed help lifting my head or arm or leg. I felt tossed about like a rag doll when they repositioned me. I was and still am in mourning for all my muscle mass. It seems I have to learn how to redo everything.

I understand now why I worked so hard at physio, at least the muscles were there at one point and are waiting to be recalled. I can't imagine if they weren't there at all. I had childlike excitement the first time I was able to roll from side to side on the bed by myself  (a few days ago) and again last night when I managed to stand up from the chair on my own (this was with strong encouragement from the nurse). I still can't honestly believe how hard it was.

Every day I get a little physically stronger and can walk a bit more with physio. Yes, I've had the  setbacks like my GI bleeds and blood clots. Of course it's not going as fast as I would like but that's because I would like to run out of here right now. Only my body doesn't seem to be agreeing with me.

I will admit that I was in complete denial of how sick I actually was pre-transplant (as Amy says, they don't use the BiPap machine for fun), and then being split open twice, given new lungs, and then having all my blood plasma switched out with the crazy Ecmo machine, it's no wonder my body is slightly protesting for a rest. So much for the transplant book's encouraging words of "many people don't even remember ICU," my transplant book will say "I lived in ICU for weeks!"

Right now the thing that is mostly keeping me in ICU is my trach. I have developed a bit of anxiety around the switch over which is super annoying. They've given me something to help which worked today so hopefully will cut this off before it gets worse. The doctors are super on top of everything. As I'm sure you read, I did 10 hrs off the vent yesterday and then today they want longer and then soon they'll want 24/7.

That's basically all from ICU and all I can type on my phone. The GI dr won the battle over continuing the blood thinner drip so that has been stopped and replaced with a twice daily needle to the stomach or thigh. I would be on the side of the lung drs except that I've stopped pooping blood, so yay to that! Even if it does involved more needles.

Thank you all for your support and messages and thoughts. It's been easier knowing there is a cheering squad behind me.


Dave VanSlyke said...

So glad to hear from you again! I can only imagine how surreal it must be to have new lungs after all you've been through - before you know it I bet you'll be enjoying the experience! Best wishes in your continuing improvement - you GO!

Nadine said...

Oh, Alley - so delighted to have you back on here. Amy did a terrific job but super to get your prospective on things again. Hugs to you and so glad you have that much already behind you and, even though there will be set backs, things are looking up from here....some uphills for sure, but some real milestones too. Cheering you on from N. B. Nadine

christina mccully said...

It is nice to read your post and you are now typing them. I am so happy for you,

Heather McGrath said...

So glad you are back and feeling better each day! With all you've been through and continue to go through, I can still hear the humour in your writing! 😄

Scott said...

Yay! I guess it's about time to admit that your blog (including Amy's posts) are being read in Australia too - great to "hear" from you in person again. We are continuing to hope and pray for your healing, and the emotional health of your family and friends too.
Scott and Leanne Davis.

Diana B said...

10 hours off the vent! Awesome!

Anonymous said...


Michelle Matta

Anonymous said...

So happy to see you writing all this, keep on fighting your way back, can't wait to read your next book post transplant if you decide to do that Alison. Yay for you and healing to continue fast
Sending my best wishes
Kaye Birnie
Mom to cf cyster