Monday, August 12, 2013

Us

I ran into a couple of people this past weekend who didn't even know that I was out of the hospital. So considering that I've been out of the hospital since Miles' birthday (June 28th) I thought we'd actually post an update on us on the blog and maybe a few more people can get a nice surprise. 
As I said I left the hospital on Miles' birthday at the end of June having had my kidneys fixed almost completely. The docs were pretty surprised by how well my kidneys rebounded, and Miles celebrated with a cupcake. The only problem with my kidneys doing so well meant that I was no longer on dialysis which kept me high on the liver transplant list. Now I am barely on the list, but am still listed and still not feeling even close to 50% of myself. So even though I am lower on the transplant list than I was when I was actually listed, I feel nowhere as good as I did when I was listed, if that makes sense? The listing system is a messed up system in a lot of ways, but we'll live with it and be grateful we have a system period that provides the opportunity to have a life saved. I feel good almost everyday now, but I have little or no energy (especially by the end of the day), I have no muscle mass at all, and my diet is a work in progress as I try to introduce new foods every day and see how my system tolerates each one of them. My staple is fish and rice, so that's good. 
It has been amazing to be home with Megan and Miles. It has come with its challenges since Miles is an amazing but also busy 2 year old, but the more time I am away from the hospital, the more I don't ever want to go back there, except for the actual liver transplant of course.  
In the meantime, we "wait" without really waiting for the phone call with a new liver to come, meaning we're not on the edge of our seats right now but are trying to live our lives as normally as possible, not knowing at all when I'm going to even get sick enough to qualify for a new liver. We keep pretty busy though. 
Megan has been doing a lot of biking, both road and mountain, of which I am super jealous, but it keeps her sane and happy, as do her projects around the house, like putting new flooring in our laundry room. 
We've spent good time with family




And we've done a whole lotta sitting and relaxing, since that's about the extent of my activity these days. 



And below is a photo of all that was left of Miles' waffle with strawberries and cream from Bruges. I had none. 
Well sir, that's us for now. Sorry to anybody who didn't know that I was out of the hospital but, I am! And it's been great! Keep the prayers coming our way if you can. They are definitely working and we need them!











2 comments:

  1. Alec, Megan
    So great to see this update. I have been wondering how things were going. When I was still working at IMC I was able to view from afar but now that I am in Seattle I am out of the loop. I would love to stay in touch with you both. My email is jesse.nehring@pacificu.edu. Megan I am happy to see you are out playing. Alec good to hear you are finding foods to keep down. And great that MIles is out running you both:)
    Sincerely,
    Jesse Nehring

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  2. Love this post!!! All the pictures are so great!! Love and miss you guys!!

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