Great Weekend

This weekend has been really really nice. Shawn was discharged home on Friday following his bronch. Everything looked great and he was still open, infection resolving and no signs of rejection.
So late Friday afternoon I took my husband home !!!

Friday night we went out for a ride, met up with some friends, and had dinner. When we got home, Shawn's surgeon called. I didn't get to speak to him after the bronch, it was the first time and it left me fairly unsettled. I was so relieved to hear from him. His voice is very soothing, my own personal valium.

Saturday was another great day, I felt creative and was productive. Shawn slept in until 2 in the afternoon, well deserved rest after a week in the hospital. In the afternoon I met my dear friends and neighbors for a walk on the beach.
Saturday night we went to a party and that was a really good time too. Just shooting the shit, laughing, trading stories, enjoying some good music, good drinks and good friends. The ride home was sweet and romantic.

Sunday I slept in and that afternoon we all went to a barbecue.

This morning we all got up and went out for breakfast. Went for a ride on the bike and then Shawn and Sara went out together. While they were out I completed another seaglass and seapottery piece, while sitting on my deck with the gorgeous sunshine beating down on me.

When they got home we sat together and had dinner.

Life is so good. This Wednesday is Shawn's official six month transplant anniversary. I am happily surprised everyday with the simplicity and the complexity of our lives.
I am so grateful for everyday. I am grateful to Shawn's Team and so very grateful to his donor.

He is Amazing

Shawn is now 17 wks post-op, here are the stats:

Pre-transplant wt.167...PFT's ?21%
Post-op on discharge wt. 163
2 1/2 wks post-op...... 12/17 ....PFT's 49%
3 1/2 wks post-op ..... 12/24....PFT's 61%
5 wks post-op.....Jan 2-4......3 day stay due to low-level rejection
11 wks post-op.....Feb 12....scheduled bronch led to 4 day inpatient stay for surgical debridement and dilation.
13 1/2 wks post-op....March 2....scheduled surgical debridement and dilation (day surgery)

16wks post-op......March 19th...surgical debridement and dilation

17wks out he is 190+ lbs

He has a clinic appointment April 1st so I'm anxious to see what his PFT's will be and his weight. Pre-op appt April 3rd and they have scheduled him for surgical debridement and dilation for the wk of March 6th.

I have to speak with the surgeon, I mean how often is he going to have to have this done? When will he be all healed up? The surgeon said it's not a big deal, just more of a maitenence job.

Really I can't complain at all, I know the ordeals that most transplant recipients go through and I consider Shawn to be extremely fortunate.

He is amazing.

Changes

So yesterday Shawn sort of complained in a very casual manner that he was feeling a bit SOB, but mostly with exertion such as climbing two flights of stairs but not at rest. His O2 sats would drop to 89 but quickly climb back into the high 90's w/ rest. He said he just felt tight, not his whole chest just inhaling he said he felt like he was trying to force the air in, his lungs were expanding without any discomfort but he felt like it was hard to get the air to them.

Now Shawn has twice been to the OR for what the surgeon refers to as debridement and dilation and we knew he would be going back in but with me having plans to be in Florida the surgeon said they could go three weeks instead of two UNLESS Shawn ran into any trouble. His surgeon explained that after applying the electrical current to the sloughing areas in the main bronchi/hook up it would shrink up as it healed and that is why they also dilated, an attempt to counteract the tightening.

Well two weeks would have been right on the money. He called his team this morning and the surgeon wants him in the OR tomorrow.

When Shawn called and told me I had a wide mix of emotions, I felt guilt immediately for being here and for having them delay it to three weeks to begin with. I felt helpless because I am here and he is there and there is no possible way for me to get back to Boston before tomorrow morning. I felt afraid...what if something happened? I felt mad at my Mother because she pushed for me to come down here when I knew he wasn't stable enough. I felt like I really let Shawn down.

Then I stopped myself, (not before crying a little with frustration) I have no control over this. I can't change it, no matter what and this is what is best for Shawn.

I read a book when I was going through alot and really fighting for my own sanity, by Ekhardt Tolland called "The Power of Now". I collected many little gems from that book and it has helped me through many hard times. One thing was that if you find yourself in circumstances that suck, think and act as if you had chosen it for yourself, not that it was thrust upon you.

So how about things were scheduled this way from beginning. Shawn is comfortable with the procedure and always feels better afterward. We have complete trust in his team and faith in God. Arrangements were made for Sara Lou to have a sleepover, my Brother Peter took the day off to drive Shawn and provide moral support. I am enjoying the last days of my vacation before driving back up to Boston on Friday and by the time I get back Shawn will be feeling great and all will be right with the world.

I've talked with Shawn and I'm proud of him for doing this, for taking responsibility for his care I'm proud that he is doing this even though he would have preferred to wait.
He's alright with the decision and the way things are right now. He knows he will feel better and he's glad he's having it done. His big thing was he didn't want me to worry or be upset. He is such an incredible guy.

So it's o.k. there is no emergency, Shawn is fine and his team is acting appropriately.
I'm at Peace with it. I really am.

A Good Day

I had a beautiful breakfast with Shawn at this little diner I think it's in Salem. Then Shawn dropped me off at the library to attend the Swampscott Historical Society meeting. Which I did and I enjoyed that. Then I walked home on this gorgeous sunny day, dropped my purse off at my house, and headed down to the beach.

Today I am so grateful to have this apartment, to live in this lovely community, to have nothing and everything all at once.
Maybe that doesn't make a lot of sense but a few years ago our lives were so different. Today we rent not own, we drive an 89 Jeep that my brother-in-law gave us instead of the two SUV's we used to have. Today we don't have all of that responsibility hanging over our heads anymore, the constant worry about the house and knowing the house was a huge source of misery for all of us but unable to sell it to break even in it's run-down state. It was just really a ton of money going right out the window, a fucking shame. We had two hefty truck payments and ins payments and so on. I know most people understand how expensive it is to live and when your income is cut by two thirds you can't live the same way.

So this really isn't a bitch session or poor me, it's a declaration of my freedom. my freedom to be happy again.

Our lives have improved in so many ways, I am so grateful.

Having Shawn back is incredible. Sometimes I really have to stop and think is this real? Were we all so stressed out and squashed just a few months ago? Was he really on the brink of death just 14 weeks ago? Were we up to our eyeballs in debt?
It really seems like it was just a long bad dream or sometimes it seems like it's all maybe just a book that I read and not our history, our reality.

Every morning I wake to the sun rising over the ocean and bouncing off of the water and into my room. It is glorious.

My husband is breathing deep and peaceful.

We go out and enjoy seeing our friends, a lot of whom we haven't spent time with in years because Shawn was so sick and I was so fucked up. We all sit at the dinner table together each night. We all talk and laugh and goof around because Shawn's not suffering anymore. He's fat and has color in his face and life in his eyes. He can breathe. He's better. It's the most wonderful thing in the world. I can't believe how Blessed we've really been.

Today we pay our bills ahead of schedule every month because we are living within our "new" means. We live in a state that although not perfect has healthcare coverage that is made affordable to just about everyone and we'd be lost without it. Shawn's Transplant Team is amazing.

Well i realize that this whole post has been a bunch of disjointed rambling but today that's where my mind is. All over the place but very happy
I am so happy.

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!

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.

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