Tuesday, May 26, 2009

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.

Friday, May 22, 2009

Update

Shawn spoke with the doc this morning, they have scheduled his fundoplication for next Wed. so if all goes well with today's surgery they may discharge him sat and then readmit him on Wed. So what do they call that WE furlough.
I'll have to go to Virginia without him. Wah

Wednesday, May 20, 2009

Good News and video clip

Tina is celebrating Good News with Shawn and Sara at B&W!!! No rejection !!!!! No pneumonia !!!!! he is being treated with IV antibiotics for an infection @ hook-up site R side. No infection noted in L side. CT scan is scheduled, trip to OR on Friday to determine what is causing the restriction/decrease in FEV1%.



I was lazy and wanted to get this up quick so I just copied my FB status.

His FEV1% was 28%. So weird.
Oh this is pretty cool. Shawn bought me a new camera for my birthday and it takes video, I was goofing around and taped this. Hee hee it's funny. Note he is sucking in his gut because he thought I was taking a picture not video!!!!

video

Tuesday, May 19, 2009

He's in the clink

Crap. Long story and right now is probably not the best time for me to try and get it all down but here is the basics.

He went in for sched dilitation and biopsy, his R side had pus in it and was super restricted. They opened him up and cleaned him out but are keeping him for a few days of IV abx. The restriction kept him from clearing secretions and they pooled and festered yum.

Rule #1 Don't mess with your Transplant Team

Shawn got a good ass kicking from several members.

I felt like crawling under the bed. I should have insisted that he went in Friday night. It was just weird timing. He had pre-op on Friday, they did a chest x-ray, I kind of assumed that if there was anything on it they would have notified us but no. I'm not sure if there was anything there on the x-ray or not, I'll have to clarify that.

Man I am pooped out, I feel like shit. I hate leaving the hospital alone. I hate it. I know that Shawn is where he needs to be, believe me and I am grateful that he has such a great team but I miss him.
It's 4:30 and I just miss him. This is the shit that reminds me that he is not o.k.
When he feels good, even when he is going in every two weeks to be opened up it feels alright. Like he is going to have his braces tightened or something, it doesn't feel scary. In fact I am comforted by the fact that they are always peeking into those beautiful new lungs of his.

I want to live in the state of semi-denial. I like it there.

he

Tuesday, May 12, 2009

F'ing Beach nut-bag!

Grrrr. O.K. well I'll probably post more about this later because after catching up on everyone else's blog I realize that I am finally getting sleepy and it is 3:47 a.m. so that is a good thing.

So the moon is full and when that happens the tides are super high and super low and when that happens the seaglass is abundant and when that happens Tina is a happy camper!

Early this morning 7ish the tide was out and I could see a stupid guy down there with his stupid baggie and I wanted to throw a rock at him or at least hope that a seagull would poop on him, because I wanted to go down there. I knew that I couldn't because Shawn was going to be out all morning and I did not want to take the chance of running into "C". No spank you.

That guy stayed down there until the tide came in.....I knew it wasn't "C" (I have binoculars mwahahahaha)

(wow, side note...the birds just started singing...soooo loudly that I can hear them with all of the windows closed. No wonder I usually wake up every morning at this ungodly hour...time for a white noise machine 3:54 a.m.)

So anyway I didn't get to go down then but made Shawn promise me that later 6ish when the tide was out he would go down with me.

Shawn and Sara were out together when the tide went out this afternoon and MAN I wanted to go down in the worst way but I didn't. I didn't go because I was petrified that I was going to run into "C" (the fullmoon and corresponding tides really bring out the beachcombers).


I worked on a project most of the day and stared at the beach....ahhh imagining the treasures I might find and thanking God for our beautiful home.

Shawn comes home and I am chopping at the bit to go over. He's a doll and doesn't make me feel like I am being a pain in the ass even though I know he was headed for the couch. He collars Jake and away we go.

You know I didn't feel right from the moment we got there. The coast was clear so to speak, no sign of "C" but I couldn't get into my zone, my eyes couldn't focus on the glass, I was feeling frustrated and distracted. I never feel that way on the beach when I am with Shawn and of course never ever before the stalker crap started.

I look way down the beach ( WAY down, like easily 600yds away) and I see this guy ( my eyes are bad ) the clothing doesn't look like "C", but the way he moved looked like him. I scurried back toward my end where Shawn was talking to another guy with his dogs. I felt safer, so moved down toward the water but right below Shawn.

I am telling you I dropped my eyes down to the sand for what seemed like 5 seconds and when I picked my head up he was there.

He was maybe 15 ft away from me and moving very quickly, big grin in his face, saying something about me never getting enough and never being satisfied ( I'm assuming he was making reference to the seaglass but it sounded weird) I nearly had a heart attack. I totally froze. All of the scenarios that I had rehearsed in my head and all of the advice from my therapist, the police and my friends went right out the window.

Shawn was there in front of me, between "C" and I before I realized anyone else was moving.
"C" stopped short and said something like "How are you doing?"
Shawn said something to "C" and sort of put his arm out for me to move behind him because that mother fucker was actually circling my husband to get to me. I don't know what else was said I swear to God it was like I fell asleep or something. The next thing I knew we were already up the stairs and Shawn was yanking on my arm because I think I nearly walked into traffic.

I think Shawn called the police, I don't know we'll talk about it today I'm sure. I cooked dinner and went to bed. All of the air had been let out of me, I felt flat and I just wanted to go to sleep.

When Shawn came up to bed, I told him that I was thankful he was with me. He told me not to think about it right then and to go to sleep. He said so sweetly "You're safe, sleep Baby" and so I did until of course around 1 a.m.

I woke up pissed at myself for forgetting everything I had planned on doing and saying. I also realize that I really need to do something. Take a self defense class or shatever but I can not be afraid like this, it's awful.

Friday, May 8, 2009

Supplies have arrived!!!


I have been waiting for some supplies to arrive for my jewelery and yesterday there on my doorstep was the little box!
Drill bits which are soooo tiny, some leather cording, and my beautiful sterling silver wire at last.
Shawn also picked me up a bottle of my glue that I use for mandalas so I am good to go.



This piece which is a pottery shard is going to be used in a piece for a friend of mine. I love the color, which is pretty uncommon and the intricacy of the design. So delicate looking but clearly has withstood the test of time being tossed around in the ocean for God knows how long. I have not found a similar piece.

I think she will really like it, hopefully she'll love it!






So anyhoo it's a gorgeous day outside, and I'll be hitting the beach soon. I have not seen my "stalker, C" since my husband went to the Police so I'm hoping he won't be a problem. Plus now that the weather is warming up there is usually at least a couple of people on the beach, walking or playing with their dogs.
Honestly I feel best when Shawn is down there with me. I'm petrified of getting zoned out looking for seaglass and having 'C' catch me by surprise. I've gotten into the habit of keeping a lg rock in my seaglass bag ( which is a cotton drawstring sack), I figure it's easy to swing and control. Plus I wouldn't have to fumble around for it and it's not an additional thing to carry.
I always have my cell phone and whistle too.

Enjoy the Day!!!

Tuesday, May 5, 2009





So Here is Shawn pre-op, hanging out being a very patient patient, then post-op clearly aggravated with me for taking his picture and finally the monitor that reveals those beautiful numbers that make my heart soar. Heart Rate of 77 (norm is 60-90),
Oxygen saturation 98%, 98%, 98% !!!!!
I see those numbers and it always amazes me. 98%.
Pre-transplant, the first time I ever saw an O2 sat on him was back in Feb of 2000 when he was asymptomatic but first diagnosed and he was 92%.
At his worst, he would dip into the 70's with mild exertion.
Here he is with those wonderful new lungs and they are giving him an O2 sat of 98% and that is fresh out of anesthesia.

I spoke to Dr.C (or "Phillip" as he informed me he would like to be addressed as) post-op and the lungs look great. Apparently the R side needed to be dilated, the L was open there was no plugging, no signs of rejection.
He didn't biopsy for rejection, he feels that the FEV1 drop is most likely due to the restriction.
I can't lie I was a little surprised when he said he hadn't biopsied but I have to trust that he knows his shit and I do trust his judgment.

(Camp has a very special place in my heart, how can he not? But that's another post, because he is an exceptional man, unlike any other surgeon I have encountered.)

I go down the list of signs of rejection in my head pretty regularly and it's true Shawn has only the decrease in FEV1% which I know is a powerful number but I just don't feel like it is all that important anymore. Well in the capacity of clinical indicators for rejection. I think it makes perfect sense that Shawn can't get a good number with the restriction. Soooo perhaps the numbers will look better next time, but regardless of what they say I know my husband.

I know that when he comes out of the OR he can breathe freely. He goes up and down the stairs without any shortness of breath, he has no wheezing, no trapped secretions and he FEELS better.

Shawn is almost 23 weeks post-transplant.... I am so thrilled with him, with our donor, with Camp, with the whole Transplant Team, with the staff at B&W from the parking attendants and cafeteria cashiers to the schedulers and the techs. This is a wonderful and positive experience and every breathe he takes is another miracle. I'm so thankful he's better.

I'd like to show my appreciation to all of them but I'm not exactly sure how. Hmmmm?
I would be grateful for any ideas or suggestions.

We are living an amazing and Blessed life.

Sunday, May 3, 2009