2012- 11 months till I escape transplant?

Dec 21st, 2012 eh.. That'd be a cool day to get your call. Not knowing whether not just you, but your entire surgical team, family, world was waking up from that one. Maybe I should write a book about that. Hmmm... short story contest I've been contemplating here I come.

Since my last post I've been back to the transplant hospital for my one year followup since assessment. Hubby was fighting off some sort of sinus thing during that time and I felt worse for the wear myself, though I never actually caught it. All excuses aside, my numbers were "similar" but ever so slightly down enough to be mentioned. The doctor they assigned me a year and a half ago kept up his emotionless support of me continuing to wait to list, with a side mention that my other clinic tends to rush people through the process. I'm not really comfortable with the underlying tension that apparently is there between the hospitals, but I digress. I also found out that this doctor, the one I've tried so hard to know and bond with, is retiring before my next scheduled visit to him. That was a strange feeling. Being basically wished "good luck with this big journey you've hardly dipped your toes into". Next visit, should it remain 6 months away, should be very interesting...

(((((( This post was written several months ago and not posted)))))))

Empty Transplant List

Not literally, but it feels so empty now. Beckoning me. The monster that ate all my friends.

Early early this morning my good buddy LB got her call and later her surgery. She did so well so far, despite some tricky antibody shiz that had to be overcome (her donor was the perfect match for her uniqueness, and we expect and hope that means she's likely to continue her smooth sail into recovery). LB was the last of my friends on the transplant list. Also the last to be anywhere near transplant in my opinion... minus me of course. We are talking 3, almost 4 straight years of having someone to cheer for. Someone to hope for their call, to excitedly await what they "will be like" with a "normal" body...

This feels on purpose. Fateful. I dunno... maybe I subscribe a little too heavily to the 'everything happens for a reason' publication, but I always feel like things line up on purpose in my life. I think I'm meant to travel that transplant road without CF co-travellers, but I really can't imagine why.

People like LB inspire me to get on that list now. She listed at a perfectly appropriate time (we've matched lung functions for over a year- yikes.. I'm behind... ) and got, knock on big fat wood, the reward. The way it should be. Sometimes this inspires me to do the right thing. Othertimes I irrationally imagine that for every good transplant my friends get, the more likely mine will go crappy. Someone's has to afterall? Too much thinking. Not enough doing. Thoughts are poison.

ANYWAYS, life is still good. I had my clinic that came 3 months after the previous one. A small victory of staying away from SMH for that long without a hitch. I did well considering. Gained weight, pfts about the same, transplant non-listed status accepted by head honcho doc. Blah blah rah rah. I'm glad, but not proud. I will feel scared, but incredibly proud when I take my leap. Of that, I'm certain.

Monday I got to try out the other side of the fence. Another meant-to-be. Mom had emergency appendix surgery. Thankfully we google-diagnosed her relatively early but it was awful watching her in pain, and hard to wait the short 45 minutes through the surgery, and the long 8 hours leading up to it.. despite its routine-ness. The kind of thing that hurts knowing you're going to do this to your family again x 8 hours x major surgery. Youch.

LB, since you're better.. I guess we wont' be seeing much blogging anymore since thats your M.O.

Couldn't be happier for you.

Bike Bike Bike

Miracles still happen, don't they?

My lungs sure think so. Somethings more 'right' than usual. I'm half trying to analyze it to death so that I can cling to it, and half trying to play the "if you truly love something you let it go" card and just enjoy it... haha.

I'm taking this opportunity to do more, not less physio. More, not less-----er, no---bike (I've been awful at it, with the excuse being summer weather doesn't warrant stationary bike use). When I used to come fresh out of i.v.'s I tried this too.. hoping to hold onto the good. It never seemed to work but that's no reason to stop trying, right? Right.

I've wondered about a few things causing my downswing in.. I think?.. Inflammation symptoms. One hypothesis is being out of azithromycin for 6 weeks turned into a discovery that I'm better off than on it? Another could be new nephew Elijah's magical baby cuteness cures lung problems? I like to credit the baby, especially when he decided to allow his first laugh-a-thon to be hosted at Auntie M's house the other week. Super early for his age, I might add.

Just when you think you know your health pattern, it changes. And for once I'm grateful. No hospital admission for me this October.... she proclaims on the 5th, nervously laughing...

When every day is a lifechanger

Being absent in the blog world for a month or two doesn't sound like something that would require a long list of catching up. I'm learning more and more that CF is a window through which we can see that life actually DOES change very often, sometimes for the happier, sometimes not, but always to be respected and appreciated.

I wish I could recall my entire time since the last entry, but recent events shine louder and therefore thats what I can think of. This week I lost both my grandmother and a close CF friend. Mere days apart. In their own way they were both shocking, as I have never lost a grandparent, and because this particular CF friend radiated life even at her sickest. I have never felt so robotic after deaths as I have this week. I'm not sure of the cause, but I know that "growing up" can vaguely cover it. Theres something about losing people who you've actually spoke of death with (CF friend, and the CF friends I lost since 2008 did not have this talk with me, so this is new) and theres something else about losing people that are closer and closer to yourself and are immediate family who have always been there (Gramma). Both things seem to bring an eerily deep truth with them.. that we are all going to die. No one is exempt. Being 29 when this is being driven home is odd.. and yet I feel like most people are actually older, not younger than me when they come to this realization...

I'm spending today, my first with no "busy" thoughts or stuff to do this week, organizing my thoughts. Because of this, I don't have much more to say right now.. but its funny how things pop out just during the moments you think you are having a mental break from it all. I was cleaning my fish today.. I always run his new water a few days before I switch him because I know the chlorine and chemicals in tap water need this time to dissipate, also it helps with having the correct temperature ready for him. As I fought him into his little net from his very grungy bowl (due to the events of this week) I said aloud, "dont fight it, just trust that you're going to a better place" and there it was.. another metaphor for life and death. I swear I wasn't trying to think of one either, but as I lifted him in the net, forcing him to lay in pure air for a few seconds as I moved him, I felt for that little fish, and how often I force him to do the thing we have to do when we leave this world.. have a little faith and get through the transition to a better place.

New Year

August feels so different. There's this new baby nephew of mine, who I'm loving. There's more babies and plans on the way this month.. showers, birthdays, busy busy. I'm starting my new agenda/journal thing.. I remember starting them every September in school and pledging to write neater and be more organized. Then there's the ever-present transplant.

The reality-check of CF oddly enough hits me (us?) over and over, but right now it hits harder. Seeing my baby sister get to move ahead of me with her gorgeous child, while wonderful, is hard. Don't get me wrong, I most certainly don't mind that she's first to have this. In fact, I love it. She's always second, as most second-children are (to reach milestones, and in our case, to marry) and I think its cool for once she gets to have something first. BUT... because she's younger, I can't just shrug off the symbolism.. I can't tell myself "its her time now, and mine later" and move on... because I am older, because Mike and I wouldve wanted kids fairly fast if things were different (because we want to be young with them, and because I'm like every other woman with a ticking biological clock). For these reasons her mommyhood symbolizes for the first time in my entire life, that I'm different and broken.

CF is fantastic for that, really though.. I mean we are lucky that for the most part and thanks to research we CAN live normal lives. I'm thrilled to have gotten to go to school, to date and marry, to work.. I am forever grateful and wouldn't change my life. I know I got a lot more than so many others get. And when I get sad, I've been remembering something lately. My sister was born to be a mom. I wasn't. It's very true. She had dolls and loved children and babies ALWAYS. Me? Not so much. I always pictured myself with kids, like most people do, but I didn't long for them like she did. I longed for love. A fairytale one. And as I find life goes, you get what you need, not what you "want". It was when I fell in love that wanting children began. I wanted to bring our love to life. Sorry, want, present-tense.

I'm not 100% done with hope. I'm really not. I'm just the type who likes to be okay with life, no matter what it gives me. And that's what I'm working through right now. Because I know I'm lucky, no matter what the future holds. I'm lucky and I'm happy. There's still surrogacy, and adoption, if things for me go well. Which brings me to transplant... I have officially met my goal of seeing my nephew born before listing. I'm very proud of that and he is worth the moments I've had already. It doesn't make big choices any easier. Somedays I long to list and move on and have my chance to breathe and feel free. Other days I want to wait as long as I possibly can, knowing the uncertain future that transplant provides. I can promise you one thing, I doubt I'll blog about this again. I have no more reason to wait except following my gut and the guidance of the doctor's. No more reason to research, to plan. I'm "ready". I know what is ahead, its just gonna come when it comes, and that's how it has to be.

Happy 29th birthday today to my fabulously supportive husband who is always willing to ride this rollercoaster with me, who gets stronger everyday, makes me prouder every day, and makes me believe that we have a purpose, together, that hopefully isn't fulfilled for a long, long time.

Baby Love

July is here

Hi folks.

Nothing much new here. I'm the same, which is more than I can say for a boatload of my friends. PErhaps why the urge to blog comes ever-so-slightly, I write half of one, then don't post (also blame firefox for being the only browser that WILL post.. and I'm an IE fan.. you do the math).

This past month has been busy-er-ish. Lots to do. Birthday's, showers (baby for 2011, not bridal), golf for hubby (more time alone for me: totally fine), nicer weather/invites for BBQ's (I'll admit, going out in general no longer thrills me... bad Michelle).. etc.

This month saw two clinic appts, one at my regular clinic which produced magical fake higher lung function results. I still don't believe it was any more than a machine glitch, but it sure was nice to stay iv-free for longer. Total fate, I swear. I keep saying that I'm confident that I am health-safe till after my sister has her baby. I believe its fate for me to be completely stable until then.. and here we are in July, now, at last.

I also revisited my transplant hospital since it has been 6 whole months since my transplant assessment. I saw doctor quiet-voice for the first time since a year ago when he turned me away saying I was too early for transplant. Ironic, since I've gone from angry at him, to almost being super grateful for him as I implore the universe to let me see my bloodrelated neice/nephew come into this world before re-entering hell. He told me this week that he will "see me in 6 months" and that he is completely content with me waiting to list (even though I was told in Feb that it was time). Dr quiet-voice doesn't really have my confidence.. I think those of us who decline the slowest are the most in danger of missing the boat for transplant, even though that may sound counter-intuitive.

23 days until my sister is due with her baby and I can revel in possibly the only child I will ever know to have genes of my own. Of course, I look forward to more than that. I am eager to see my whole family excited. For my sister and her husband to experience the wonder of parenthood.. the blessing of it.. and for my parents to be the excited/fun-loving/spoiling/etc grandparents they were destined to be. If I could only also see my husband be the father he is destined to be, I am pretty sure not getting to be a mom would almost be okay in my life. I will have 3 gorgeous children to watch grow and who's lives I can impact, and I feel blessed for even that.

Here's to July, and focusing on the crazy-exciting and letting the scary decisions rest for just a little bit longer.