Seaglass everywhere!

Arghhh

I have seaglass everywhere, it's making me crazy. I'm having such a hard time focusing on one thing.
It's the Spring coming, my poor little brain is starting to rev up, this is the hard part, the in-between.
Pretty soon mania will set in and watch out I'll be doing a million things at once and they'll all be awesome to me. My creativity goes through the roof, all of the ideas that are scattered in my head will suddenly become crystal clear, I will see the path and I will follow it.

But right now is the disjointed stage.

I'm going to take a shower.

An Amazing Night!

Woo hoo would you just check out that stud!

In all seriousness, this was one of the most incredible nights in my life! It was amazing, the energy in the place was just crazy. My Babe was on fire, just enjoying everyone.

I felt wonderful, my sister-in-law who works for MAC cosmetics did my make-up for me, I even had fake eyelashes on !!! Hee hee I felt like a movie star hahahhaa. Shawn bought me my top, I wore my hair in ringlets which is always a huge hit, Shawn loves it, I don't wear it that way very often because it takes like two hours with a skinny skinny curling iron.

I am normally selfconscious and somewhat awkward in a group but I'll tell you I didn't have a single twinge of freaking out. I think they were pumping something into the air, endorphins I bet!

I don't know but man it was wonderful, Shawn and I socialized with people we haven't seen in years. It was like getting out of prison or something.
I feel like we had been in such a hard place for sooo long, it was just so wonderful.
I have never been so proud.

I can't figure this out, I don't know how to get the pictures to be where I want them to be but I guess it doesn't matter!

You have my husband up on stage giving a little speech.... The tall girl with me in black is Shawn's little sister, Sarah.....The close up is me and my Candy Girl........The group shot is my girl Kim, her husband Joe and friends Brian and Mary...I swear Shawn wasn't drunk he was intoxicated with all the great energy in the place.

This was such an amazing night, I'm gonna do a separate post cause this is making me nuts!

Shawn's Big Night

Alright having a crazy time trying to get pictures from Shawn's benefit to here so bear with me

No Rejection

Me and Sara Lou Hoo









Our studly pooch Jake











Shawn and I goofing in the hospital, (he's our other stud)











Shawn's very young,28, and very sweet anesthesiologist


Yayyy Good news all around!
I picked up Shawn from the hospital yesterday afternoon, he looks wonderful and he is feeling really good too, still has a little cough but no "pneumonia"

His cultures came back showing MRSA which he has been colonized with for years but I assumed it wouldn't show up in the new lungs, but I thought wrong. They treated it pretty agressively with IV Vanco while inhouse and have sent hime home on PO Linezolid, crazy expensive, 9 pills get ready for this........$826.20 !!! Can you believe that? How is it possible? Thank God we live in Mass. He had to wait for a couple of hours for it to go through the insurance but it did, thankfully.

He got the call yesterday afternoon that his biposy came back with no signs of rejection. Phew.

I kind of expected or was at least prepared for rejection. It's crazy the last biopsy he was feeling perfectly fine and came back with rejection, this time he felt like shit and had crap going on in those lungs and no rejection. I'm not complaining but man you just can't tell.

I have to change the date on my dgtrs camera, darn

He's out of surgery

Shawn is out of surgery he did great ! The surgeon went in and cleaned up the seams, got rid of some necrotic tissue that was just sort of hanging out in there clogging up the works. According to the surgeon, everything looks good, no purulent secretions, the airways look fine. He said that there are "scabby" type areas from the original trauma, that just take time to slough off, sometimes months and months and months. They took biopsies and sent them off so I'll be waiting for those to come back.

He did have a slightly elevated white count, so the surgeon said the transplant doc might want to put in a PICC line and put him on a couple of weeks of IV abx but we'll see what she says. I'm wondering about the steroids, will he have to go on a higher dose for now? Hmmmm

Shawn looks great his throat is a little raw but it hasn't stopped him from ordering his food, he's starving!

Thanks for all of your well wishes, support and prayers!

Waiting

I'm down in the library, waiting for Shawn. They took him in right on time @ 11:15. He looked great going in. I brought my camera in today, got a shot of the totally adorable "28 yr old" anesthesiologist. Crap I have to go plug in the laptop.

Oh Damn these Holidays

My poorBabe, he was admitted. You know when the pager went off I knew it was too soon. They went in and sure enough something is going on at the seam. He knew there was something flopping around in there, he could feel it and you could hear it. They couldn't clean it up.

Thank God he kept bitching about it because he wasn't scheduled for this bronch until the 24th or 27th. There were a lot of secretions, could be pneumonia, could just be that they couldn't get past that "misjoint". They took cultures put him on IV abx for now and tomorrow he will go into the OR so they can put him under and his surgeon will hopefully go in and fix things up. I guess we'll know more after the surgery. They'll take biopsies then too and check for rejection. I guess it doesn't look like rejection whatever the hell that means.

I'm glad he went out for his ride yesterday.

It's alright, he is where he needs to be and we'll get through this.
Thanks for the support guys, I am going to bring Shawn in the laptop so he'll probably be in chat tonight. I hope so.

Bronch and Biopsy Today

So here I am waiting in the family area once again. I don't mind at all.
Shawn is having a bronchoscopy and biopsy upstairs. Today he is exactly 12 weeks out of transplant. They usually schedule a bronch/biopsy for three months anyway so this is really perfect as far as I'm concerned.
They had scheduled it for Feb 27th, but he has some weird coughing going on so they bumped it up to today.

I don't know what is normal and what isn't for transplanted lungs so it could be totally nothing. His new lungs sound different, than an original healthy set, like mine so I don't really have a clue.
He had this weird flapping sound like a valve opening and closing for a couple of days, which the doctor thought might be a "shaggy" airway. I guess where the new lungs meet the old body, there is an overlap of tissue that eventually sloughs off, so maybe it was a hanging piece of tissue. That sound is gone now and he just has a cough, not a bad one, not constant and not productive but it sounds irritated.

Shawn's transplant has a history with Holidays, as you know he was transplanted on Thanksgiving and we got the call that he was experiencing rejection on New Years Eve so Shawn is wary because tomorrow is Valentines Day, oh that would really be too much so lets hope the biopsy shows no rejection.
Well lets hope there is no rejection anyway.

I know that rejection is always a possibility and I know that it is not unusual in the first year, but I don't want him to have anymore. Thanks but no thanks.

Well it is in Gods hands and whatever the outcome it'll be o.k.

He is Super Bad

Oh Man he is soooooo bad! It's beautiful out right now, gorgeous day, light sweater weather. Well with warm weather around here it brings out the motorcycles that are just sitting in their garages waiting for the Spring.

Shawn was supposed to give up his bike for transplant, and like a puking teenager who swears they'll never drink again if they just get through the night, he has re-negged on the bike.

Guess who just had to ride around the block. Yup. He is such an ass. He's still on weight restrictions, up to 15lbs, and he's out riding his 600+ lb bike. So I'm sitting out here on our deck, with my laptop perched on my lap and listening to the roar of his bike from somewhere down the road. I'm somewhere between worried, irritated, and excited.

Oh he's back and in one piece and smiling from ear to ear.

I have accepted that Shawn is not going to behave. He's not going to do the "smart" thing.

I can't really bring myself to be mad about it. I think about our friends that have done the right and safe thing all of their lives and didn't stop them from getting cancer, dying in a car accident, or being stolen away by Cystic Fibrosis. So maybe the lesson in that is to enjoy life.

Don't be a fucking shithead, but take some chances, push yourself a little bit, pursue the things that bring you joy.

Maybe I am just trying to rationalize away the fact that my husband is a nut and doesn't listen to me, but maybe it's o.k.

If you could have seen the smile on his face as he throttled that bike up to our drive, the look of pure joy and freedom plastered across his face, you'd forgive him too.

This time last year my husband was dying and now he's living. Amen to that.

He's got Meds !

So after an hour and a half on the telephone, driving into Boston, chasing down the social worker, harassing his poor pregnant NP, and hanging out for four hours at the in-house pharmacy he has his meds! Thank God. Yes it was a pain in the ass and yes Shawn nearly blew his top, but he picked up around $1500 worth of meds for $35. How can we not be totally grateful? Phew...I'm glad that is over.

He has some weird thing going on in his lung, when he breathes in and out it sounds like a flap is opening and closing. His O2 sats are fine, no SOB, no pain, no increase in sputum, but a nagging non-productive cough and that weird sound. The doctor thought it might be a "shaggy" airway, I guess where the new and old meet there is a bit if overlap, and that tissue usually sloughs off and is coughed up I guess. So the bronch and biopsy that was scheduled for Feb 27th got bumped to this Thursday.


In other news Shawn's benefit is taking off, tickets are selling well and we're aiming for a sell out.
It's super exciting, a lot of people are working really hard and pulling this all together.
I can't wait!


I have to say I've been thinking alot about Jenn. Jenn is a friend of ours that we met through our online Cystic Fibrosis community. She passed away suddenly and it's just so unfair. She was trying to get ready for transplant, she needed a double lung and liver transplant, but she didn't make it. I'm sure she didn't see it coming, she had just finished making this beautiful pink afghan for a baby shower, she had plans.
Her funeral is this Friday. What a fucking shame.

Be grateful for everyday that you have the privalege of walking around on the face of this earth, sitting in traffic, worrying about bills, and all the bothersome stuff. You can see the sun shining and you can love.

Before and After Transplant Photo's

This was in February of 2008, one year ago. Shawn weighed in at 134lbs, was on oxygen 24/7, and basically spent his life in that chair. My poor Babe, he broke my heart.














Here is Shawn February 2009, 10 weeks after his transplant. Weighing in at 185lbs!

Check out the new and improved Shawn Stickney, doesn't he look amazing?
This was last night at a birthday party for a friend, our first social outing in a very looooooong time. I am so proud of him.

Check out the Flyers for Shawns Benefit

His friends Rob, Bill and their crew w/ my girlfriend, Melissa pulled this whole thing together and it's going to be an amazing night, I can't wait.
We are so blessed!
Just as Shawn was freaking out because his insurance was temporarily canceled and he was going to pay for some heavy hitters out of pocket, pennies from heaven. Amen

Health Insurance Nightmares

Poor Shawn, last week we got a notice that his health insurance was being canceled because he didn't fill out a review form, he had of course since there was no way we would jeopardize his coverage. So after making 4 calls and sitting on hold for up to 14 minutes, I e-mailed them. Well we got a call back right away, the rep assured us everything was fine, ignore the notice, they had received the forms back in Dec, don't worry about it. Shawn got her name and a reference number for the call. Thank Goodness.

So today he goes to Walgreens to pick up scripts and they deny him. Shawn is on prednisone which makes him a little on edge, well man he flipped out. I can't say that I blame him I mean these meds are serious shit, it's his life.

Now after calling and calling and getting no answer, he is in the jeep driving to the headquarters, and he is really pissed. Yikes.

I hope he doesn't freak out and get bucked down. I feel so bad for him, insurance is a bitch man.

I texted him he says he's fine but he could be full of shit

The New Old Shawn

So things are different here at the homestead, better in a ton of ways but definitely an adjustment.
I put my foot down on Saturday and stuck to my guns, I left, boycotted dinner, turned off my ringer and went for a 6 and 1/2 hour ride. Me in my shitbox Jeep, that I love, windows open, fresh cold air blasting in, and listening to Don Henley's "Boys of Summer" 1/2 of a dozen times.

It was great. I stopped along the way splurged and bought myself a Lg. Hot Cappuccino, no sugar, skim milk. What made the concoction even sweeter is that I paid for it with quarters I stole from Shawn's change jar !

When I got back we had a "talk", I told him that I need full disclosure, no bullshit, it's not fair. He agreed. I told him if he ever tried to make me doubt myself, if he tried to convince that what I was wrong about what I knew was right again, I would not be back in 6 1/2 hours. F'er. He's an Effer alright, but I find him totally irresistible.

Want to read something that will make you say "Awwww" seriously, I'll probably go to hell for sharing this but when I was out for my ride, Shawn had texted me a bunch of times, I didn't respond until 8 'ish, he asked me when I was coming home, I texted him back "Why?" and he texted me this: "Because I miss you and I love you and if your not here I can't make things better." He's a sweet talker alright.


So Shawn is back to his spunky old self, he's a challenge, he makes me work in this relationship. It's weird our dynamic is new I think. He couldn't breathe for so long he didn't participate in much anymore, he couldn't. I guess I didn't realize how much had changed, he was a ghost of himself.

That's exactly how I would describe it, like Shawn's light had been fading for the last four years, from November of 04 when we first moved into our house until November of 2008, until transplant.
We were talking about this and I told him that when he was transplanted, it was like he got new batteries. Like when you put new batteries in a flashlight and that dim light becomes super bright. That is what it's like, Shawn is back "on" again. He's funny and cocky, he moves very quickly, he eats like a pig, he cooks dinner, fixes snacks, delegates chores to Sara and insures they are completed, he goes grocery shopping and makes phone calls.
He is reconnecting with friends, reconnecting with life really. He makes me laugh and cry, and he frustrates me and he amazes me. He's arrogant and frightened. He is a super smart-ass, super fresh, super sweet.

Transplant is a funny and amazing and wonderful thing.