He's Amazing

( I have a site on caringbridge...shawnstickney...if you would like to see the exciting play by play of his transplant)

Well Shawn looks fantastic! Today they got him up he walked a 1/2 mile total today, they removed his nasogastric tube so YAY! His incision is gigantic, I expected it but still it seems weird. He's also on Dilaudid for pain so he's still a bit loopy, but only a bit. This afternoon I gave him a bedbath, he won't let the nurses do any of that he saves it all for me. I enjoy every second of it, he's so pink and healthy like a new baby.

So me....hmmmm. I'm doing great! I feel like the weight of the world has been lifted off of my shoulders. I guess I wasn't fully aware of how this was affecting me physically. I feel like ten years has come off of my face, my shoulders feel relaxed, my back doesn't hurt, the dull ache I've had in my head for so long is gone. I feel quiet.
All of this time waiting, waiting for the other shoe to fall. It's over.

Waiting... wondering if we were waiting too long before transplant and would the next infection be the one he won't recover from. As a CF patient you know that either an infection is going to take you out or you are going to cheat by having the transplant. The timing is the tough part I think, making the decision to have a lung transplant which I guess seems like it would be an easy is the most difficult. At least it was for Shawn.

You have this little window where your too sick to go on but you are well enough to withstand the trauma of a lung transplant. It seems like Shawn's timing was perfect. God's timing.

The surgeon told me that in his 15 years of performing lung transplants Shawn's were on the very top of the worst lungs he's ever seen and the most difficult to remove. Trapped in his body by adhesions. Now they're gone and the most beautiful set of fresh pink ones are in there now.

This has been the most amazing experience and the smoothest I could ever hope for.
Every little detail perfectly orchestrated.

Amen

He's made it !!!!! I woke to someone squeezing my toe, Dr.Camp, Shawn's surgeon. "He's done, he's stable, he's sick, he's sick like he just had a transplant."
They are going to settle him in and then come and get me.

The word sick confused me. He's not "sick", he's recovering. He's not sick, he's a fighter, a survivor, he's my Shawn.

This early morning my husband has finally emerged breathing with new lungs and new life.
Amen

UPDATE 12:40 am

Good News!!!! The OR just called Shawn's second lung is in he is off of the bypass and looks great, they are preparing to close him up, which takes some time, soooo he should be settled into the ICU in a couple of hours.
I'm so Thankful.
My Babe is alright, my Babe is getting a second chance. God bless our donor. How wonderful how perfectly selfless.

I was just saying to Mac (Shawn's friend from Florida, he is here with me) this whole day just seemed to fly by, it just went. Not agonizingly slow like I assumed it would, it just passed at a relaxed fluid pace. Thank God.

He's in !!!!

Shawn was offically listed yesterday morning...this morning the phone rang at just before 9 am and my husband stood still and leaned on the counter and man he didn't have to say a word. The energy coming from him was screaming "THIS IS IT THIS IS IT"
So 24 hrs after being listed here we are. I am typing from the thoracic ICU family waiting room. Shawn has been fully prepped he is waiting down in the OR for the doctor to return with the lungs. We said our "see you later" and our "I love you" and they swept him away from me.
I wanted so badly to burst into tears, to climb up with him, hold him, smell him and feel him just once more but I was good. We had a couple of rougue tears but other than that we were both troopers.

Right after they called we went back upstairs and made sweet monkey love. I'm thankful we did, we felt connected and at peace.

He looks great, he is in great shape and is at peace with this.

His best friend from Florida Mac just flew in yesterday and Shawn kept saying "I hope I don't get called while Mac is here, he'll have a crappy visit" Ha!!! Mac is thrilled to be here for this event and I am too. He is a great friend to Shawn and has been for many years. He is quiet and stable and keeps us all grounded. Just the kind of friend to have around.

I am very grateful that his wonderful wife, Kim is sharing him with us.

Wow my Babe is in having a double lung transplant...

....and the dragging continues....

Yikes it has been forever!! I don't have net set up at the new place yet, it's weird to be so out of touch. Anyhoo....

Our transplant "support team" meeting turned out to be a clinical appt and a meeting with the team in the exam room. It was actually pretty comical, there we were, Tom, Candy, Scott, Peter, my Mother, Shawn and I all crammed into this tiny room. The staff got a huge charge out of it and they were glad to see so many were willing to take time out for Shawn.

B&W called us that Thursday to tell us he would be listed. We were all about celebrating and spreading the word and waiting for the call, then we go this past Wed for our transplant support group meeting and the coordinator tells us that he is inactive until the insurance co clinical review is complete!!! Hello! Well it takes two days I guess so we should have heard Friday but we didn't. He will call on Monday.


So about me.... I'm enjoying our new place, it is beautiful. I take Jake "our pooch" to the beach twice a day. He poops there. Do you think it is environmentally sound to let his poop run out in to the ocean? They are very small poops.

I'm typing this from the lobby of the Marriott, my dgtr had a birthday sleepover with 6 of her friends. My MIL works for Marriott so the rooms were comp.

I had a whole room to myself. No offense to my ever loving husband but man...a night without the whoosh of oxygen, without the fear of being strangled with tubing while I sleep, without having to get up to make him tea or set-up a neb treatment in the middle of the night because of a coughing fit, a night without watching his chest rise and fall to make sure he's breathing....
A morning waking up on my own and being able to just lay in the bed, surrounded by giant soft fluffy pillows, waking up and tending to myself alone oh it was amazing.

What a bitch I must sound like but I don't care it was only one night and I thoroughly enjoyed it.
He was happy for me, genuinely happy for me. He bought me bubble bath and wished me a wonderful night.

My Babe is the most wonderful man and the world. I enjoyed this but I will be happy to return home with him.

Dragging it out

Well thanks for the comments guys it really make s a difference ! Just knowing someone is out there giving me a cyber pat on the back is very helpful.

Things are better or I'm better either way I'm dealing better.

I spoke with the transplant social worker on Monday, Wednesday my "support team" and the transplant team are meeting. Shawn's ph probe, his dental exam and our new apartment were the last obstacles to transplant so now that those things are settled the "Transplant Team" will present his case with this new info and the make their decision on Thursday.

I guess they met when Shawn was inpt and he was a go pending those three things and the support team. Now everything is in line so for the love of God on Thursday they will give make the decision to list him. So a couple of more days I suppose it won't kill us but man it's not fun either.

The SW was full of sunshine and reminded me that this is not nearly as bad as "waiting" once listed.
I'm sure that is very very true I just want to get things set in motion.

Shawn's birthday is November 18th, he'll be 35. Fuck man 35.


I love our new place, it's wonderful! My dog Jake and I walk the beach twice a day, we play some catch run around like nuts! It feels great. I wake up with the sunrise each morning. I refuse to get blinds, much to Shawn's chagrin.

In all of this I'm trying to remember me. I've been collecting sea glass and hope to use it in some way in my Christmas gifts. My little treasures.
A dear friend of mine KN mentioned making soaps today, I've always wanted to so now I have a partner in crime! Yee hoo!

She's great, we're very like minded so I'm very thankful for our blossoming friendship.

Any hoo thanks for keeping my spirits up! Here's to hanging in there!

Coming unwound....

So today I am really feeling the weight of everything going on in my life, I'm overwhelmed.

1) Shawn is end-stage. He is dying. I think that it is a true statement, without this transplant his lungs are going to kill him.
We have a meeting with the transplant team and our "support team". These are friends and family that agree to provide support to Shawn post-transplant. If Shawn needs to get to an appointment and I for some reason can't take him, someone would. He can't miss ANY appointments. I guess they provide moral support. We have great friends, there were so many willing to help us out it was hard to narrow it down.
They are taking time off from work to attend this meeting. It says a lot.

So that's the good part. This meeting I am assuming is when they will officially list him. I don't know. It's nerve wracking. I assume they are because why elsewould they have out team come in.

2) I'm still moving our crap into the new place. Not horrible just tiresome

3) I'm starting a part time position as school nurse at my daughters school. I'll work toward tuition.

3) I'm not sleeping.

4) My Father has cancer, he has mets to the brain, liver and "somewhere near my groin". They are beginning aggressive chemotherapy and radiation on Monday. He said he started a med to help keep the swelling in his brain down. What the fuck.

He is in Chicago at "The Cancer Treatment Centers of America". I want to be with him, he wants me to be with him. He's dying and I can't go see him because Shawn will be listed, hopefully Wednesday, and I can't leave him.
I feel horrible about that because we were estranged for many years and we only reconciled in February. He actually came up when Shawn went into the hospital for a month. He did the plumbing in my kitchen.

We wasted so many years being hurt and stubborn and angry. Now here we are and he is dying and I may not see him before he does.

I want to comfort him and I can't. I want to see him and smell him and laugh at the funny way he walks, always a sailor. I can't and it feels really shitty.



So today I'm trying to accept and balance a few things.

Pooping me out

Hate to bitch, but all of this moving is pooping me out. I hate to come back to this place everyday, very depressing.

We had so many dreams for this house. I loved it as soon as I saw it. It really is an adorable little house, white with green shutters perched on top of a hill.
He got so sick so fast, we never stood a chance. Hindsight is 20/20 right? I try not to but I sometimes think about how different Shawn's health might be if we had never set foot in here. I know this is part of the master plan and all that but I do wonder.

So now, my little house sits here void of life like it did for 20 years before we came along.

When we bought the place it was full with all of the previous owners belongings. All of her furniture, glassware, appliances and even all of the things that should have been special to her. Cards exchanged over the course of their marriage, Christmas decorations, everything.
She wanted to leave this house behind her and all of it's memories.

I never unpacked my precious things, I never felt welcome in this house. I know that sounds weird but it is most definitely true. I never felt like I could make this our home.

So now, I am moving all of my treasures that have been packed away since 2004, and decorating our new place. Our new home. A home that feels right in every way. I feel like we belong there and that it was waiting for us.


This also leaves me with a houseful of old furniture, beautiful things but I want nothing to do with them. So I hope to post everything on the net and sell them. Ethan Allen dining and kitchen sets, several pieces of late 1800's furniture, and wood working tools galore. I even have a fricken anchor in my basement!


Well, back to work!

a

Ixnay on the otorcyclemay

Yeah no more bike. The team frowns upon it. Nobody will come out and say it but apparently the deal is that is you are willing to risk your life on a bike you don't deserve to extend it with new lungs.
I understand. If some young guy with the same deal as Shawn needs those lungs and he doesn't ride a bike, he should have them. He'll value them more. I guess I understand it but I don't have to like it and I don't.

Shawn doesn't want to talk about it with me. He said he will do what ever the doctors tell him too.
I love that man.

Torn