Not #'s we were hoping for

Well I guess we expected a big jump in Shawn's FEV1% because he feels so much better since having his dilatation on Monday.

His FEV1% increased by 5% to a whopping 37% or 1.66L

His FVC did increase another 17% to an all time high of 77% or 4.31L so that was very encouraging.

Shawn is pretty bummed out over it, he was quiet all the way home. Yeah suddenly I missed the smart ass ball buster that he has been over the last few days.

Up and down, up and down, up and down. I could go for a little predictability right now.

I didn't feel like it was the right time to lecture him on using his incentive spirometer but I wanted to.

We got home and he headed off to the gym, I guess that's a good sign right? He keeps trying.
He has to go back next Wed for D&D again. Well slow and steady wins the race.

We actually ran into a guy @ clinic who had a single lung tx about a month before Shawn and he has had so many misc complications in addition to stenosis that I really felt like we couldn't complain at all. Plus he lives like two hours away from the hospital so what a bitch that has got to be.
I can't imagine what we would do if we were so far away. At least I know that if Shawn has to be inpt it's only a 20 min drive for me to see him.

So once again in perspective things are going really well, he is having a very nice recovery and our lives are certainly more stable than they have ever really been.

It will be nice though when those #'s look good.

Oh yeah I've forgiven him for the tires.

New Tires

Ugh Shaw has this thing about new tires.
Every truck he has always desperately needs new tires. I don't think they really need new tires I think he just likes new tires.
A month ago he was going on and on about how the Jeep desperately needed new tires and he couldn't buy three new tires to match the never used spare tire on the back, he wanted to buy four new tires and would then need to buy a fifth tire for a spare since the new ones were going to be bigger than the originals for some reason. So he was very busy on-line looking up tires and of course new wheels because the new tires would be too big for the old wheels. Mind you this Jeep is a real beat up truck, putting fancy tires and rims would be like putting a silk hat on a pig.

Well now he has a new truck. A big Dodge Ram. He got it from a friend of his, some deal was made (he didn't pay for it)I'm not sure of the details but he's thrilled because losing his pick-up and having to drive around in the Jeep was a big blow to his manhood or pride or whatever.

He said it needed some work on the exhaust and something in the front end. He had the exhaust fixed and then I thought he was dropping it off today to have the clunking in the front end fixed.
This afternoon we go to pick it up, he comes out to tell me I can go that he's all set, I asked him if they fixed it and he says yes....it needed new tires! He fucking kills me. New tires! My stupid Jeep barely stops I drive with my tippy toe, the starter grinds, you get dripped on when it rains, and the muffler is swinging and he needed new tires.

Him and his frigging new tires. So I'm a little aggravated.

I asked him what happened to my Jeep desperately needing new tires....he says that he mostly just wanted new tires to make it look better. That is a perfect example of the sneaky Shawn. Fucker.


Oh well I guess it's not a huge deal, but aggravating none-the-less.

He can breathe again....whew

Shawn getting cranky waiting in pre-op

Here he finally Konked out

This is The Fabulous Dr.Camp, the surgeon who played a HUGE role in saving my husbands life.
He is Shawn's Transplant Surgeon and we love him.


Shawn did great today and he looks, sounds and feels so much better. It really is amazing. We got home from the hospital and Shawn walked up all the steps to our place @ a good clip and was not even slightly winded.

His surgeon (Camp)said that the R side was a pin hole....my poor baby. The L side had shrunk up too but not so bad.
So he was stretched open and now feels like a million bucks.
Camp said that the lungs looked great, no plugging, no nastiness going on and no further debridement needed he's very well healed.
Shawn will have to go back in next week to have that R side stretched a bit more.

But really who could complain, not me and certainly not Shawn. A very small price to pay.

He'll be doing PFT's on Wednesday and I'm dying to see how they look.



( I hate how I can not arrange the fucking pictures on this damn thing! )


Oh P.S.
An update on Mr. Kuckoo pants my beach weirdo....So Thursday I was out all day with Shawn, we picked up Sara Lou from drama @ 5:30 and get home at 6'ish and guess what? Yup...a gift left for me on my doorstep. A very nice plank, painted, distressed and then carefully stenciled with.... 'Swampscott est.1629'. to hang on the side of my house I guess. There was a note written on the back:
" I'll be alone at Rosa's Barbershop 6:30-9:30 cleaning. Why don't you come a knockin and cheer me up. Your Friend, Craig"

Yeah, I know. I have a problem.

Kicking himself...so I don't have to.

So Shawn is totally regretting his decision to wait until Monday for his D&D surgery. He can't breathe for shit and it's pretty sad.
He actually started admitting this on Friday but he felt it was too late to do anything about it and he's probably right. I don't know maybe not but anyway it's scheduled for tomorrow and tomorrow can't get here soon enough.

Funny it's only been a few months that Shawn has been breathing normally but wow the difference is crazy. I forgot how awful it is. I'm sure he has to.

I think he is especially pissed because I'm having this "problem" with the seaglass guy and he is not in any shape to do anything about it. Not that he should be messing around but he would pretty easily intimidate this guy physically. Shawn has a really mean face that says "Don't Fuck With Me"
and that is pretty much all it has ever taken. He prides himself on scaring off guys. He's fresh like that.

Well anyhoo it's one more night and then whew easy breathing again.

Shocked

I was shocked by today's clinic appt.

I'm just going to put it out there first and then the details.

Shawn's FEV1% was fucking 35%. I almost shit. He brought the copy into the exam room where Sara Lou and I were waiting while he did his PFT's and the first thing he said was "That's probably not right, right?"

It's a 47% decrease since Feb 3rd. He was @ 65% then. I asked him how many times he took them and he said three times. I told him that it was most likely accurate. I was so shocked by it. I told Sara to go hang in the waiting room because when the doctor came in she was going to check his hernia. I wasn't lying but he certainly wasn't going to be naked.
I was afraid. I was coming unglued and I didn't want to freak her out.

I was afraid that the doctor was going to see those numbers and then come in and deliver some harsh news.

As we sat there and I looked at the numbers, I kept thinking, 'Don't freak him out Tina, Don't you dare freak him out !'

My logical mind had immediately checked out and I was running on fear and disbelief. What the hell? This isn't supposed to happen. Not to Shawn. Not to Shawn because he is a superman, my superman. My Super Transplant Man.
I thought what the fuck it's April Fools Day, of course another pseudo holiday like Valentines Day, New Years, Christmas Eve ugh.
What is with him and these special days? Every frigging one starting with transplant has been eventful.
I tried to make my head work properly...I tried to switch into logical nurse mode but I was really having a hard time. I'm sure it was only a few minutes but it felt like an eternity. I wanted so badly to soothe myself and Shawn too.

Shawn is the one who actually snapped me out of it and got my brain moving in a more productive direction. He said something to the effect of "Babe, I told you I feel like shit when I need to be opened up again, I can't breathe, this just says it on paper, but I knew I guess."

He took on the "I told you so" look and probably was thankful for the validation. He had a damn good reason for feeling short of breathe. That poor bastard.

So all his labs are excellent, his chest x-ray is clear.

The doctor comes in and they weren't shocked by his PFT's, they said it was to be expected based on the narrowing and obstruction of his airways due to the tissue sloughing off. I guess it shrinks up when they go in and debride with electricity and that is why they also dilate to help offset some of that.

He has been needing the procedure roughly every two weeks and tomorrow will be two weeks. He is scheduled to go in on Monday, the doctor offered to do it sooner but Shawn said no. She said this is not the first time they have dealt with this and that it can take many months before it is completely healed up but it's not anything to be worried about. They feel it's maneagable I guess. Probably small fries compared to some of the complications tranplant patients often experience. He is going to have PFT's done next Wed per our request. Shawn says that he feels wide open after the D&D so he wants to see his numbers. Me too.

She told him not to gain anymore weight (187lbs), no more than one beer on an occasion, wear sunblock and was otherwise very pleased with him overall. He is going to the gym on a daily basis, she was happy with that as well. He's down to 7.5mg of Prednisone and has been @ a therapeutic level with 2mg a.m. and 1mg p.m. Prograf. His WBC was a lovely 7.2 and all other labs within normal limits. So YAY for all of that good news.

So o.k. now that it's all out there, I feel better.

But man it did freak me out.

Ugly weather out there

Ugh the weather is really gross today. The sky is gray, it's drizzling out and feels raw. Yuck. My plan is to go out, hit the tanning booth, then head to the craft store to pick up some supplies. I have sorted through quite a bit of my glass and realized that ALOT of it is not jewelery quality. Lucky for me you can do a million other things with it. I happen to love the look of stained glass panels, and you can use seaglass for this as well.

Plus it's really free-form so if I don't over analyze it I should be able to create some very nice panels. The over analyzing is what gets me every time.

I'll spend hours sorting and laying them out and then feel like it's not quite right and just dump them all out. ARGH!

I have to keep reminding myself that my work does not need to be like anybody else's work. It does not have to live up to anyone elses standards. Unfortunately I can not get over that hurdle. Why? Who the hell knows but today maybe a little closer to getting something done.

What a bitch session.

Oh and I have a guy from the beach who is turning into a bit of a problem for me. I met him while collecting seaglass, he makes small talk and I practically see him everytime I'm down there. He seemed very nice, always had little tid-bits of infromation about the glass, history, etc. He is the one who reccomended I go to the Swampscott historical society meeting which I did. The first one he wasn't at. When I saw him next and he found out I went he said he was going to the next one (they are once a month). Everytime I went down to the beach, which was MY quiet time, he is there and always comes right over to me and starts chatting away, personal shit that really makes me uncomfortable.
I asked Shawn to come to the next historical meeting to "meet" him. Shawn did, introduced himself, growled and peed on my leg and then left.
The guy frigging walked home with me. When I got to the corner of my street I said I was going in to make lunch and see you later...he went down to the beach and stayed there for hours. When I thought he was gone, I went down and he was there but sitting close to the wall so I couldn't see him from my house or the street. I nearly had a heart attck.
He says all these cheesy things in a laughing manner like"Where have you been my whole life" and crap like "I wish my wife was more like you". I always try and laugh it off I don't know what to do. I don't engage in the conversations but he keeps going, I usually end up just leaving and it pisses me off.
So a few weeks ago before I went to Florida, he comes down to the beach and leaves a little gift bag on my pile, and takes off. It had some shells and pieces of pottery and shit from the beach, things I know were part of his "treasure collection". Shawn was none too pleased and wanted to confront him in some way but I didn't think it was a good idea, the guy is not 'all there' if you know what I mean.
I go to Florida, forget a bout the whole thing and when I came home, the weather was too crappy for me to go down to the beach very often. So last week, wed or thur, I'm home alone and the fucking doorbell rings, I go down and he's standing on my frigging stoop. I almost shit. I opened the door, he said he hadn't seen me and was worried about me, brought me a gardening book he thought I would like blah blah blah. I was polite but quickly said I was cooking and had to run. He said he would see me on the beach and that he had missed me. Super Creepy.

I called Shawn, he was super pissed. The weather was bad so I didn't go down to the beach and then on Friday morning while the tide was still out I went down for a little while and he fucking shows up like ten minutes later and starts following me around the beach blathering on and on about his wife and how he is having a yard sale and wants me to come by, tells me where he lives. Mind you this is on a Friday, middle of the day and crappy weather. I tell him I'm busy and leave the beach. I go home tell Shawn and he's even more aggravated. Later that day in the early evening around 6, the tide is out I go back down and he fucking shows up five minutes later with pastries and is trying to give them to me. I called Shawn on my cell, Shawn goes out onto the porch calls me into the house. Craig gives me a bunch of coins from the Middle East with oil rigs and Alladin lamps on them, tells me to give them to Shawn so he doesn't get mad at him.

I took off. What the hell am I supposed to do? Shawn's solution is to go punch him in the face. Yeah not such a good idea but I'm not sure what I should do. I really don't want him bothering me anymore, he really crossed the line when he came to my house. Now I don't know how to handle it. I'm thinking of asking the Police for advice, not filing a report or anything but just asking what the hell I should do.

Any advice?

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.