Wednesday, December 31, 2008

Rejection rears it's head

I first posted this on Shawn's caringbridge site, so it's written for a general audience, layman.
I know many of you who understand CF and transplant will think it is simplistic, or maybe I am being unrealistic but hey it's the best I could manage. I didn't want to re-hash so I cheated and copied it from there.

Original Post:

Well tonight we got some disappointing news. Shawn had a biopsy yesterday, a tissue sample from Shawn's lungs was taken to evaluate the health of his new lungs.
The doctor called tonight, there was a low level of rejection detected.

Rejection is the word that evokes a plethora of emotions, fear being my personal one, my heavy hitter.

Shawn will be admitted on Friday and put on very high doses of steroids to knock down his immune system. His is working too well, it recognizes Shawns new lungs as a foreign object, despite his anti-rejection meds.
This will hopefully only be a three day stay, he will be discharged on a high dose prednisone taper.

The Doctor assured the two of us that this was very low-level rejection, very manageable and very common. Par for the course, so to speak.

We got the news while driving to a friends house, a friend who coincidentally is also a mother to a son, Dominic. Dominic has had three liver transplants. Needless to say she is an expert. L listened to me blubber and bawl, as I got my news across to her.
L was very reassuring, she talked me down. Early detection of very low level rejection is not total freakout stuff. It happens, it not unusual and due to the relaxed pace of admission, definitely acceptable, concern worthy, but o.k.
Roll with it.
It is so easy for me to have Faith in God when things are moving happily in a positive direction. When things are scary, I have to fall back and surrender my fear and worry to My Heavenly Father.
The Faith of a mustard seed. I have that, I have much more than that.
Tonight I am at peace.
Happy New Year to all of you !Happy New Year and God Bless You !
I am wishing you all peace for this wonderful season of new beginnings.
We have been so Blessed in 2008, I can't wait to see what excitement lies in store for us in
2009 !!!!

Monday, December 29, 2008

Walking with Shawn

It seems strange but it's real, we have been going out for real walks everyday. He's obviously still improving but it makes me feel like I'm in great shape, most of my walking partners kill me. I am 5 ft I have pretty short legs, but as a nurse I really learned to hustle.

It's great anyway, exploring the area, up and down the twisting hills through our new neighborhood is a lot of fun, keeps me entertained. There are some beautiful homes, great history.

Anyhoo...I'm still working with my sea glass, I have completed several pieces and I'm pretty proud of them. I'd wear them. I love the glass. The depth and history it has, where has it been?

I'm going to come up with a list...not sure what kind of list but goals of some sort. I need some purpose in my life. I need some structure.
I guess my options are unlimited so who knows what I'll come up with but I know there have been a billion times that I have said, "I have always wanted to do that...or go there or whatever."

My life keeps interfering with my living.

Not this time

Living 2009

Wednesday, December 24, 2008

Merry Christmas Eve !!!!!

I have to stop farting around and finish up about two hundred projects that are Christmas gifts. Since our finances are, shall we say sparce, we have what we need.
I decided to make gifts,
I decided to teach myself how to make jewelery with the sea glass that I've collected since we moved here. I love it. Sea glass is so magical.

So far I've made around a dozen little angels. I'm not sure what I want to call them....I feel like they represent my husbands transplant, the sea glass crafted into something giving it a new happy life. Our donor, his lungs giving my husband a beautiful new life. I don't know.

Anyhoo

But now I'm moving on to the serious and excitingly creative jewelery. My head is exploding with ideas. I've been drawing out designs for months. Tonight Adderral and caffeine will keep me focused and in the zone. Tina's workshop

Well that's the plan...

Shawn is sort of trying to stay out of my whirlwind. I love him.

Sara has been the big wrapper, she's a great wrapper.
I love her.

Merry Christmas guys!!! Enjoy each other,


Monday, December 22, 2008

This one is no for the faint of heart


My Hero My Babe HOME!!!!!!!! Doesn't he look incredible?

This is Shawn showing off his incision

Obviously I don't know how to do this

This is Post-op Day # 3 Sara was very excited to see her dad. All gowned and gloved and her sweetness shines right through
Post-op Day # Two

Here he was pretty fresh off of the vent, looking a little stoned.
He is smiling under there I swear!

The Big Day Thanksgiving Morning


This is Shawn the morning of looking very "lost in thought" about twenty minutes after the call.





Shawn Sara and I all packed and ready to go. I had to take these shots and I am glad I did.

Friday, December 19, 2008

It's been soooo long

Well what can I say....my life is very different today than it was just three weeks ago. Wow. Shawn is doing great, he looks fantastic, clinically he is surpassing all of the Team's expectations, attitude wise he is positive and upbeat, realistic and hopeful.

The first couple of days he was home were really awkward. I had become accustomed to Shawn getting up in the morning and moving from the bedroom to the couch. There I would bring him his treatments, breakfast, treatments, snack,treatments, lunch, treatments, snack, treatments, dinner, treatments snack, bedtime.
Not that he did nothing at all but I guess he did much less than I recognized.

I say that because now he is up and around all day, in my space, in my kitchen, taking care of himself and even taking care of Sara and I. Preparing meals, throwing on laundry, making the bed. Ohhhhh the humanity.

So many things changed in our relationship when he got sick, but they changed a little at a time so I guess I didn't notice. Plus they were being replaced with other tasks r/t his being sick. Little by little his lungs stole our "life" away from us.
Being in bed with him and chit chatting in the middle of the night

Yikes I had to stop typing on 12/19 and today is 12/22nd so I have to catch up. I'll start a new post

Wednesday, December 3, 2008

My Babe Can Breathe

It's amazing yesterday I could not come in to see Shawn, things had to be taken care of during the day and then my truck crapped out. Perfect timing because it got me to take it off of the road and get the Jeep reg/ins etc.

I missed Shawn, I talked to him several times but it wasn't the same. Especially when I knew he was really hurting. I couldn't comfort him. You know we both got through it and we're just fine.

I feel good, I feel tired but so relieved. I feel at peace, taken care of, and just trying to stay in the positive, in the light.
People often ask me what can we do and I never know what to say because I can't ever think of anything. Last night a good friend of mine and a fellow mother at my dgtrs school, called and delivered at least a weeks worth of dinners/lunches. I was so excited over it. Sara and I felt like we were feasting! It was wonderful, to not have to think about what to eat was great.
My girlfriend was almost as excited about it as I was. I'm so thankful.

These awful last four years are finally going to be behind us. The house, the bills but most of all his suffering, it is now in the past.
We're moving forward with our new life. Our healthy new positive peaceful life.
Amen

Monday, December 1, 2008

Monday and still amazing me

Shawn is doing so great. Today he has had his cardiac wires and two of his chest tubes removed. He is on a liquid diet, but is thankful for even that in his belly. He has been on 1L via NC and his sats are 99%, they are going to d/c that but gently for security issues. The trauma to the LLL is quickly resolving, his incision looks great. No complaints, no issues so far so good. I spoke at length with the surgeon he is clearly thrilled with Shawn's course thus far. They were going to transfer him out of ICU today but a bed wasn't going to be available until tomorrow, so the plan is tomorrow he'll be in the step down. Woo Hoo !

I still feel kind of dopey, sureal experience. I'm so thankful, so grateful. I love to just look at him, I can't believe it even though I know it. We're on the other side now. Our new life is starting and it is wonderful.

Sara Lou is doing great. Since nothing was rushed, frantic there was no anxiety. She came to see him once he was extubated. She is used to seeing him in the hospital so that's no big deal, but she was interested in seeing that incision. I like to see it too. Seeing it is very comforting, it makes me feel safe because I know it's real and I know he's living and breathing in peace, with us, together.

Sunday, November 30, 2008

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

Friday, November 28, 2008

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.

Thursday, November 27, 2008

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...

Sunday, November 23, 2008

....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.

Tuesday, November 11, 2008

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!


Saturday, November 8, 2008

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.

Friday, November 7, 2008

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

Wednesday, November 5, 2008

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.

Saturday, November 1, 2008

Thursday, October 30, 2008

The Concert

We had a good time but Sara did not really want to stand with me because I insisted on wearing some tiny Cindy Lou Who ponies on the top of my head. I mean what the hell if you can't wear ponies to a freaking "Panic at The Disco" concert when can you ? I held my ground and wore them and since the place was maybe 1/4 full they could stand on the floor @ the stage and I could sit in the 2nd row next to them.

Jordache bag

When I was a kid, you went shopping for clothing twice a year, plus you'd get clothing on almost every holiday. I used to get so pissed . At 13 I was really hoping for a cool Jordache bean shaped purse that was all of the rage at the time. I don't remember what they cost but I didn't have enough, so I was hoping for the purse or cash so I could get it myself.
No I got a dreaded hat mitten or glove and hat set. EEk. The ones that came in the box with the celophane windows so you could get a immediate peek at your knit and faux leather "Zayres" winter set.
I ended up shoplifting one. We got caught Oh my God but that's another story.

You got practical gifts. sweaters, socks, bathrobes,batteries. Then you got your biggies. the ones your were hoping for, we usually made list, our wish list. I might do that this year. Then we can pick something special and appreciated. I hate when I am just getting shit to get it. So I have something to reciprocate with.
Better yet all my gifts this year will be made by my own two little hands. Well i amy have some help but still not made in a far away land.
O.K I'm adding that I can purchase something really special if it is hand made. Craft fairs here i come, I might just cruise them for ideas.

Things are not cherished anymore

.......Remember when you had to earn your money, and you saved it up for something you really wanted and you couldn't wait until your birthday to get it.

I thought a lot about this over the last few years. I know parents whose children will never know how special it is when you save your pennies and nickles, birthday money, etc and buy your own "special thing"

These children want. They want everything that they see in the endless parade of commercials that break into the marathon sessions of television watching. They want everything their peers have, everything they see in a mall or magazine. They don't want just toys either, it's video games, dvd's, MP3 players, laptops, cell phones, clothing, it's crazy. They have everything. Everything.
They walk on it literally. The floors are littered with toys, costumes, piggy banks, train sets, GI Joes or something like him, dolls, the dolls clothes, the doll stroller, changing table, the dolls kitchen, it's crazy they litter the floor, I can hardly blame the kids , gigantic rooms overflow, stacking bins, book cases, chests, closets can't contain the vast amount of "stuff" there is.

A trip to any where that has any merchandise is a mandatory gift getting trip. Some parents buy something for their kids nearly everytime they leave and return, not from a trip mind you, I mean they ran to the grocery store for milk and come back with action figures, stickers, cheesy plastic toy guns or some crap. If the kid goes with them they tell the parent what they want and they get it. It's used and then the next gift negates the first.

I love little things maybe cause I'm short

I love the ocean, I love minitures , I was always in lice with "The Littles" as akid, they were little people with tails that lived in your walls, and were responsible for the things you just couldn't find. Hmmm "Where is that spool of thread and my wooden match box? y'know.
Anyhoo makbe miniture oceans, beaches, something like that. How about cure CF drawn into the sand on a miniture beach, maybe the ocean would be lapping at it, erasing it. Has that been done somewhere?

I see I went totally off of my original point some six million words ago.
I want to start one of those "Things I want to do" lists I've seen on some other blogs.
My head is always full of things I want to do and I do write them down but in misc notebooks, on corners of mail, on index cards, in journals, on calenders, covers of binders, schedulers. My house is full of my lists. My precious epiphanys. My river of thoughts and ideas and feelings that are constantly flowing through my mind. Sometimes it is quiet and comforting as a trickiling stream, and then sometimes it is a raging, roaring river filled with, rapids, head splitters, those crazy suck holes that crazy kyakers get caught in and nearly or maybe they do, they drown in them upside down, yikes no thanks. More and more my minds river has been somewhere in between, flowing quickly enough to be challenging but it is also still enough to be beautiful. I'm happy here. I'll enjoy it while I can.

I just looked back and my post was bout 4 or 5 different things so I chopped it up and posted it that way. I felt like it was very random'ish.

So I'm having a good Day.

I Hate Landscapers

Leaf blowers ! I read my friends blog and I went insane, she mentioned leaf blowers!

Hey those suckers produce higher decibels than a construction site. I hate them, they were trying to ban them in Wakefield or Lynnfield. Disturbing the peace!

But then all of the local landscaping companies wouldn't be able to scam the IRS, exploit the illegals and provide excessive noise and air pollution. Not to mention trying to navigate around the enormous trucks and trailers blocking the road, very dangerous. The delicious mold, mildew, pollen, animal waste etc that is ground up and blown up into the air, your air! Agggggg!

Also neighbors would have to actually come out of their houses, for more then running to the car. They might even smile, wave at each other. Get some exercise raking leaves, fresh air, interacting with your kids, jumping in piles, teaching about composting, the circle of life and all.
The wonderful smell of burning leaves wafting through the air.

I SAY BAN THE LANDSCAPERS!!!!!!!!

Hire the kids in the neighborhood, I made all my dough shoveling in the winter, raking leaves in the fall, cutting grass in the summer, clean ups in the spring! Remember when you had to earn your money, and you saved it up for something you really wanted and you couldn't wait until your birthday to get it.

I'm getting off subject so to be continued.....

Tuesday, October 28, 2008

Big Night Tomorrow

Wednesday is going to be a very special night. Sara Lou turns 13 in Nov. I am taking Sara and her best friend Amanda to see "Panic @ the Disco" in concert. It is a very cool band in the teen world, I guess. I have been force fed their music for the last 6 months, I actually like it. So I too am really looking forward to enjoying the whole experience.
I'm so excited to be making this kind of memory with Sara. Do you know what I mean? Her first concert, and a cool group too. She'll always look back on this, it will be one of those scattered events in your life that stick out. It's a good time in our lives right now.

We're moving, starting over, making so many healthy changes, Shawn's going to finally get better, we'll have our peace back. I am very grateful. I feel like we are walking into the light.

So here's to feeling good, making memories, and living life!

Monday, October 27, 2008

Another day enjoyed

First thing this morning I had an appt w/ my therapist, she's great. I respect and value her opinion. I have been feeling a little off balance, not terribly bad but just labile. I wanted to make sure that it was o.k. that I was o.k. that it was o.k. for me to be having a hard time . I'm good in general, I feel good, positive. But I keep getting the overwhelming feeling of being drunk, like things are not real, or they are in slow motion or something. Just for a few minutes at a time but it's a really strange and unsettling feeling. I just wanted to be sure it was o.k. , I'm not losing my mind or anything. Do people know when they are losing there minds, when they are going crazy. Is it possible to walk on a line and slip into it a bit, but then"snap out of it" or "pull yourself together".

Any hoo, she thinks I'm fine, that it's o.k. for me to be a bit flaky, to have mini-melt downs. She describes a pressure cooker that lets off small bursts of steam , it won't boilover if the heat is turned down.

So I am working on turning down the heat.
I feel so wonderful to be able to have the opportunity to start new.
This new place, Shawn's new lungs soon, the ocean we will have our lives back, but this time we won't have all the baggage we've been dragging around for so long.

A fresh start, our new peaceful life. Thank God

Sunday, October 26, 2008

Being Free

The last couple of days Shawn has been on an upswing.
Fri and Sat Shawn invites me up for a sleep over. Conjugal visits. Shawn's feeling good, his O2 sats are good, he looks better. We just came back from a ride on the bike, it was awesome. I'm so glad we have had this nice weekend. I love being with him on his bike. I feel good on it. I feel young and sexy, I feel carefree.

So right now it is a beautiful day, the leaves are changing, the sun is out, and I'm in love and at peace. right now

What the ?

I'm climbing out of the quicksand and someone throws me a boulder.

I don't understand. Is there a lesson that I am supposed to be learning that I'm not getting? What is so special about me that I need to be challenged constantly?

On Thur my Dad was diagnosed with cancer. I'm not sure of the primary site. He had a lump on his neck/shoulder, had it looked at, a large mass in his right upper lobe was found on x-ray. After having a PET scan the thoracic surgeon apparently told him there was cancer throughout his body. Not a lot of options. He has decided to seek treatment at "The Cancer Treatment Centers of America" in Chicago. He's 67 and healthy as a horse, Ha! Seriously he runs 3 miles with a 50lb pack on, is in Karate, rollerblades, bike rides a min of 5 miles per day. He is a certified forest firefighter with the National Park Service. I don't get it.

I don't get it. Maybe that's just it. Maybe there is no "getting it". Maybe there is no rhyme or reason to life. Maybe you should just live because it's all you really have.

On a side note....Thankfully God threw me a bone with getting the perfect place on Wed. My spirits were lifted.
Oh man.

I'm thankful for so many things though. My life is good. I have a supportive family. The most wonderful husband and daughter, a great little pooch. A gorgeous new place to move into, we'll see the sunrise every morning from our bed, a great little jeep. I have very few things to move, just our personal items. No furniture!

I'm going to be moving closer to someone very special to me.

So here's to looking up!

Friday, October 24, 2008

Boys of Summer

I love this song. Don Henley.
If you don't know this song I think you're missing something special.
As soon as I hear the opening, the seagulls, sounds of the ocean, I am immediately transported to a good place in my life. I think of standing in front of my house in Winthrop with the air whipping my hair around my face, getting in my eyes, the sounds of cars coming and going, the roar of the airplanes in the sky above me, and the steady lapping on the beach. Rising and falling waves. I hear the sound of a motor, accelerating, moaning around the bend, the music wafting out, not any motor, his motor, his truck. I would feel my heart swell in my chest, a flutter in my stomach, a hitching of my breath, a smile on my lips. I'd think ...He's coming. He's coming home to me.

That's one of my favorite memories.

Wednesday, October 22, 2008

WE GOT IT !!!!!!!!!!!!

Oh Man, We got it ! We got the most amazingly perfect apartment. !!!!!!!
I am so excited, I'm so thankful, grateful.
My Babe got the call and when he called me ( from his digs up the street), He tortured me a bit first. Just for a second.. but he is so fresh. He says in a real somber tone "Babe, are you sitting, sit down for a minute, I got a call......." so the hairs on the back of my neck stand up and my heart somehow becomes lodged in my throat and I squeak out "What happened ?" dramatic pause "Jennifer called...and...we...um...we....ah....WE GOT IT!"
Then of course lots of shrieks and howls and laughter from all of us.
Joyful noises. The Good Book says "Make a joyful noise.." well believe you me you could hear our joyful noises from both ends of the neighborhood!

Wow. Thank God, what timing.

Tuesday, October 21, 2008

I believe this is the ONE !

Oh my God, tonight we went to see what I really believe is going to be our new place.
It is gorgeous! Everything I dreamed of, everything on our "list", it is perfect.
Phenomenal location, directly across the street from my beloved ocean, "very" nice neighborhood/community, garage, beautiful craftsmanship, second and third floor, two bedrooms, all hardwood floors, state of the art washer and dryer ON THE SECOND FLOOR, closets, heated with gas, radiators ( no dusty hot air), woo hoo gorgeous kitchen, small deck off of kitchen (plenty of space for herb garden) large deck off of front with literally million dollar views, built in's everywhere.
The apartment/addition was designed by a local architect for the homeowner herself to live in, believe you me she spared no expense and you can see how much she loved her home. It is a warm loving space. Everything is new but she had the character of the main house infused in the addition, so it has all of the architectural details that I love. There is a gorgeous view of the ocean from every window except the bathroom.

Sooooo....we'll soon know for sure.

We have decided to sell our truck. We discussed it, either the motorcycle or the truck. He loves the bike, I knew he'd choose the bike, hee hee hee.
I am buying (cash, very short money) what I lovingly refer to as a hoopty. It is a jeep, just a jeep. A Sahara, hard top, soft top, bikini top that was rebuilt by my brother-in-law, it is a standard, has 4-wheel drive, and I love it!

So there frees up almost $5,500. per yr in the payments and another $1,400. in insurance!!!!!!

Almost $7,000 per year in one fell swoop, that doesn't even include the $75 per week in gas, and upkeep, tires etc.
So...better than $10,000. per year Oh hell yeah!

I'm on a roll !

P.S. Shawn is hanging in there. Fighting to stay positive, he has a very tough time with change.

Sunday, October 19, 2008

Just about me today

Well since I've received some positive reinforcement re: a "me" post, here goes nothing.

I'm tired. My mind is trying to drag me in a million different directions and I'm fighting it. We're broke, but I don't care. I'm not even broke by some standards, I'm filthy rich to someone, I'm sure.
So it's all perspective right? Half empty, half full.
I'm half full. Half full and that is just fine with me.
I'm making some big decisions here, I'm making them because someone I love very much is incapable of letting go. Letting go of "stuff".
I'm not a stuff person. Never have been. If I have clean clothes, food in my belly, a book or two, some classical music, maybe a plant, a shitbox to get from point A to point B, somewhere clean to lay my head at night I'm set. Everything else is free right? My husband, my daughter, the air we breathe, the pure beauty that nature is, the sounds of the ocean, the birds, laughter, free free free.
Maybe that is overly simplistic but it's the gist of it.

I have longed to live the simple life my whole life. I was able to do it...between husbands. Hahahahahahha. That's terrible to say but totally true. (my ex left when I was 6 mos preg, please no sympathy folks it was truly a Godsend! )
When I was just living for my daughter and I. My pregnancy was a huge awakening for me. I was truly on my own. I was determined to do it to the umpteenth degree. I wanted to start our new life with a totally clean slate, literally. My unborn child and myself were the center of my attention. I had never had that in my life. I was always living according to someone elses rules and ideals. When I spoke up I was the kooky one, I was nutty, I was way out there. But HA, finally I was at a point where I didn't care, I was going to make decisions with my own divine wisdom.

I did and you know what I made some really good ones. I chose to do things in a "pure" way. My pregnancy was natural ( no artificial ingredients), my dgtrs birth was natural, very slow (29hrs) and pretty painful but natural none the less, I nursed her, used cloth diapers, only organic cotton and usually second hand clothes, everything I did with her I tried to keep as "clean" as possible. I figured if I could keep her as natural as possible her body would do the rest. I also knew at some point she would make her own decisions and I wanted to teach her to make educated ones. She had a homeopathic/MD and to this day, she will be 13 in Nov, she has only been on abx twice. That was when I was in nursing school and bringing home loads of cooties.

So blah blah blah....the point is I am hoping to return to those roots. Back when I saved my money in a jar, when I walked everyday, and read and sang.
Back when a vehicle was just that, a vehicle.

Saturday, October 18, 2008

Time Flies

I can't believe a week has flown by. It has been busy as usual. Having Shawn "home" has been wonderful, i missed him so badly.
He is right up the street, I'm getting plenty of exercise running back and forth. It's really nice. Our friends are great.
I set up a site on Caringbridge for Shawn, trying to keep everyone up to speed is insane.
I'm going to try and dedicate some time maybe every other day where I can post, e-mail etc.
Things are extra busy right now. i'm hustling for a place since that is the ONLY obstacle to his transplant....just a little pressure.

So I have to get some sleep he has a 9 a.m. appt at B&W to have his Ph probe removed!!

I might even make this a "just about me" blog now that Shawn has his own, oh how very selfish of me!!

Friday, October 10, 2008

Feels like Forever

I feel like I haven't posted in forever. Time is kind of screwy right now for us.
Things are either in fast forward or painstakingly paused.
Hurrying or waiting, rushing or biding time.

Shawn is doing great. Dr.U has set a tentative discharge for next Monday. EEEK.
I am thrilled that he is well enough to be discharged, but I have no idea where the hell he is going to go.
He can't come here to the house. We haven't secured a new place yet so a bit anxiety provoking but we'll get through this. We always do.

That I hold onto. We always do and always better than ever! So here's to positive thinking!

Cheers!

Monday, October 6, 2008

A Good Day

Today was a good day for me, all around.
Shawn is still in the hospital, he looks really good, feels good and looking forward to getting out.
We are in a mad rush to find a new clean home for us. It has been a lot to handle on my own.

Shawn called me this morning he had actually taken it upon himself to go down to the hospital/family library get on the net and hunt down apartments. He found a great little townhouse right across from the beach, in a very nice community. He made all of the calls and made arrangements for us to take a look at it. He then surprised me by conning the doctor into letting him out to come see it with me. After all it's Shawn who has to breathe in it.

So it was such a great treat, tonight Sara, Jake and I drove into town and picked up Shawn and drove off into the night.
All of us together driving in the truck, out through the city and down along the ocean to check out the digs.
It was so nice just to be with him. Just to look over and see him sitting there, listening to him talk, smelling him, being able to reach over and touch him.
It was wonderful!

The place was very nice. Right across the street from the ocean! Duplex, no shared walls, private driveway, clean, just affordable. The location is wonderful, short distance to Sara's school and into Boston.

Anyhoo who cares I am high as a kite just from spending time with my man. He makes me so proud.

A good night

Wednesday, October 1, 2008

Transplant on Hold?

Today Shawn's doctor told him that he will not be listed Thursday.
It is because we have no place for him to go.
Our home is "sick" as some of you know. I am trying to find an apartment a.s.a.p. but trying to find new construction, no carpets, small dog friendly, in our area, and within our budget is a challenge.
I'm a bit confused and have to speak with the social worker tomorrow.
Suggestions have been pouring in which is a great help and I am going to run every lead into the ground until I find what I need.
I don't know that Shawn has time to fart around postponing transplant.

So here we are.

Today is a better day than yesterday and I'm hopeful for tomorrow.

Tattoo idea: Someone on my CF site said months ago "This too shall pass..." I liked that sentiment so much that I wrote it down on my computer desk with permanent marker. I look at it all the time and it helps to keep me grounded. I mentioned to Shawn that I might like that to be my first tattoo. Today (I think it was the same person) said it again to me. It seals the deal for me. "This too shall pass..." feels like the perfect tattoo for me.

Tuesday, September 30, 2008

A quiet day?

This morning I decided to take my daughter to school as usual and then just come back home climb back into bed and hide from the world. Temporarily escape the chaos that is my life.

Temporary being the operative word here.

Yup, I woke up and it was all still here waiting for me. I feel like I'm being devoured.

How can I possibly be able to do all of this? Finding a new place for us, a place that is CLEAN, a place that will accept a small dog and a place that we can afford is a huge challenge. I'm sure there are resources available but i'm not sure where they are and the thought of pouring my heart out to yet another person who doesn't really care is exhausting to me.

On top of all this I can't burden Shawn with my emotions.

I can't go crying to him.
I can't stress him out.
He has to believe that I am o.k. with all of this. He has to believe that I am not freaking out.
That I am not horrified of the thought of losing him.
He has to believe that I am o.k. with this big fucking mess.
I'm not.

What do I need? A drink, a pill, a smoke, should I learn to meditate, take yoga, pray more, cry more, cry less?
What is going to fix me?

I need my husband.

Somewhere in psychology you learn about an infants ability to self-soothe. They comfort themselves, put themselves at ease, go back to sleep.
Where is my ability to self-soothe? Did I ever have it? Did I lose it?

Well just a big wah wah session. I feel better already. Maybe I do have the ability to self-soothe after all.

In all my self pity I forgot to rejoice. Shawn is doing really well. He had his cath yesterday and everything looks good. He is doing PFT's this afternoon and he has a ph probe (sounds so naughty) tomorrow. For those of you who don't know PFT= pulmonary function test and a ph probe is when they stick a long catheter up your nose and down into your stomach to test the acidity of your stomach. I'm sure it's loads of fun.

So yay I'll end this on a positive note Shawn is doing well, I do have a wonderful Husband and Sara Lou has a wonderful Father!

Monday, September 29, 2008

Killing time

First thanks to everyone for helping the both of us through this mess. I take great comfort in it.



Now, here I am waiting.....with my resteraunt type pager, y'know the light up coaster type. Shawn is having his cath down in the cardiac lab.

He was relieved to find out that it was decided have his neck be the point of access since they are looking at the R side, I guess.

He was all prepared to be shaved, it's a good thing he didn't shave himself he would have been mighty itchy, Ha!



We met with his Doc and th ePA this morning, once again good vibes all around. They put me at ease.



When I got in this a.m. Shawn was quick to tell me that the night nurse drew his labs really F'ed up, and he was right.

She flushed and drew the waste syringe off of his picc and then flushed and drew a second syringe then hooked the vacutainer to the syringe to fill the lab tube rather than drawing from the line.

This is the same nurse that came into the room to check his IV alarm w/out washing her hands or gowning/gloves. Shawn stopped her before she touched anything, asking her why she wasn't gowned, she had the balls to say "yeah I saw the sign" Shawn booted her out!

I let the nurse know this a.m. about the labs, she redrew them. When the doc came in I told him about it, which he was very glad to hear because apparently Shawn 's Vanco and other labs were off. They were ready to increase his Vanco. That stupid ninny. I hope they reprimand her, that's the kind of sloppy work that can have a tremendous impact on patient plan of care. What if they had increased his Vanco and his renal function had tanked!!! Grrrr!

Anyhoo, I'm patiently waiting....Sure

Sunday, September 28, 2008

Shawn still Shawn

Shawn is looking good, he is breathing easy, eating well, seems to be in good spirits.
He is still Shawn and all of the shit that CF throws at him can't change that.

I stayed home today, my first day without seeing him and it was hard for me. I miss him, his smell, his voice, his noises.... the coughing, clearing the throat, sniffing, snorting and of course the spitting.
It's quiet here. His O2 concentrator sits quietly in the corner, air purifiers quiet, his vest perfectly still, nebulizer, inhalers and acapella all just hanging out. Waiting for Shawn. We're all waiting for Shawn.

God I miss him.

Tomorrow is his last test in the transplant evaluation. He is having a cardiac cath. This is the first really invasive thing Shawn has ever had done. He is really nervous. I'm a nurse, I see the clinical side of it and I know what it entails, not so horrible, risks of course but not so bad. He is really anxious about it. He's still cracking jokes, he just called to let me know he took a really good shower, " Cause if they're going to see my junk I want it to be clean and smelling fresh"
He's a nut.

God I miss him

Thursday, September 25, 2008

Out of the woods?

Mon I felt he was doing better. I posted he was on 8 Lpm, he was on 15 with a mask and getting his O2 sats up to high 80's. I thought that was good.
When I left him mon night I was o.k. with him, I felt he was in the right place, getting what he needed and not the end of the world, Shawn was back in the world of the living.

Tue morning I called him, he was still SOB, but better by my standards, he could actually talk on the phone. They had already placed his PICC. Our daughter, Sara Lou wanted to see him.
It is 3. for the toll and it was 17 to park on Mon, plus the gas. Shawn and I decided, I would sleep (sleep had eluded me mon night, too keyed up) , sleep, call our families and tell them he was "in", go to the bank etc then pick up Sara after school and bring her in with me. Going back and forth to the hosp twice in one day was exhausting and expensive. He would call me if anything went awry.

I talked to Shawn 3 or 4 times he seemed o.k. to me. He said he was.

Tue there was a Red Sox game, you pass Fenway on your way to B&W.
We get there around 5. I am literally in the elevator and the cell phone rings, It's Dr. U, he wants to know where I am.
I get up there introduce Sara, send her into the room.

Dr. U tells me that Shawn is doing poorly, that they could not keep his sats up and that if he didn't improve SOON, he would be trans to ICU and VENTED!!!!! Dr U was giving me the numbers on Shawn, CO2 was too high, and the rest of the facts, he wasn't exchanging. he couldn't nearly pass the 6 min/500 ft walk test. On 15 liters and mask he dropped into the 70's. Shawn was going to have a cardiac cath on wed among other things to wrap up his tx eval asap
I was so taken back with all of this I didn't retain much of what he said I guess.
All I could think of was Shawn being vented, how the hell did it get this bad.
I was told to be early wed because we had to meet with psyche, transplant, social work, etc

O.K. I'm sorry I'm tired this has been crazy I'm going to wrap this up with phenomenal news.
Shocking surprising miraculous, amazing, GOOD news.

Wed morning I get in there and Shawn looks great! Not just by my standards anyone would agree.
Overnight while sleeping like a baby he suddenly began satting 96-98% on the 15 lpm on high flow nasal can HR down to norm, 70's.
The doctor lowered his O2 to 10lpm via nasal can !!! Suddenly everything was not so dire.
I spent the day with him, he showered, still staying in the low 90's dipping to 88 here and there but still good. He ate, talked, dressed etc and still good.
He had CT scan of sinus, chest, 22 yes 22 tubes of blood drawn via PICC (phew). The cardiac cath was pushed to Thur.
Apparently the CT looked better than expected as well.

Everyone was excited about his turn around, we spoke to so many members of Shawn's CF team and everyone was very pleased, a little perplexed, but pleased. Shawn had coughed up all kinds of interesting and disgusting things. (no green, just cream)

Shawn had a very good day. By the time I left at 9:30 last night they had lowered his O2 to 8 Lpm !!!

Who knows what tomorrow/today will bring but maybe he is actually getting better.

Yayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy!

I have to mention that tue night when I got home and my mind was reeling, I went to my CF site to update.

There in chat in the middle of the night was a friend.
He talked me down so to speak. He made everything make sense to me, he helped me know what to do for Shawn. He gave me a peek of what might be going on in Shawn's head, why he was behaving the way he was, helped me understand. He helped me be a better wife to my husband. He prepared me for what might happen, what the tests were looking for, what Shawn's body was doing. Shared his own experiences, shared his wisdom. He comforted me. He talked to me for hours. His words gave me peace that night and I will be forever grateful. I'm not sure how I can thank him, but I'm going to try.

So to all of you who said your prayers, lit your candles, sent your good vibes and best intentions, he got them.
Thank You Thank You Thank You

Tomorrow, today? Thursday who knows what it will bring but tonight/this morning I feel lighthearted.

CF lovely, full of surprises.

Tuesday, September 23, 2008

Damn

I'm tired.
Shawn was admitted yesterday after a really hard weekend. He just tanked out. He was not able to keep his O2 sats in the 80's. I don't know, they say the pulse oximeter isn't accurate once you dip below 80, I don't know, I don't care either.
You don't need a machine to tell you your body is starving for air, that it's dying.
He was mottled at several times. Past the bluish tinge, and even the gray, you look like a corpse.
Even as a nurse I have never seen a living person look like that.

He suffered. I wanted so badly to be able to give some relief, but I couldn't. What the fuck could I do. He kept saying "Help me." and I kept saying "I'm trying."
I couldn't convince him that I had nothing left, that he needed more than me.

I feel so bad about this but I told him his daughter was going to watch him die a horrible tortuous death now, right now, right fucking now, right now, on his chair bent over with his mouth hanging open, trying to get some air. It was true but I still felt so mean saying it to him.
I also told him I couldn't take anymore. That's true too. I'm losing my mind.

I love him so much and it's not fair.

So I made the calls and I took him in and things are better.
Watching the color return to him, his respiration rate come down, see his O2 sats climb up out of the 70's and into high 80's. Yeah he was on 8 Lpm but who cares, his poor body must have been thrilled.

I feel so confident in the care he is receiving. Very happy with the doctors, nurses, PA etc. They are all part of an actual team, it was very comforting to the both of us.

Interesting no temps etc, doc things plugging may be a big culprit. He is on Amakacin, Vanco, and Ceftaz? I think Ceftaz can't remember.
His chest x-ray is so abnormal, I can't see how he is breathing at all.

We are meeting with a Dr. Gold something from transplant tomorrow.

I'm thankful he is where he is taken care of.

Man things turn on a dime.

Wednesday, September 17, 2008

Good vibes

Shawn and I just returned from a long ride on the bike. I love riding with him. No CF worries. I feel like we are "normal" again. Just Shawn and I. I have my arms wrapped around him, my thighs squeezing him just enjoying the ride. His respirations are unlabored and all you hear is the roar of the bike. Good times feeling free!!!!

Other good news...We have a treadmill !

Shawn actually borrowed it from a friend and it is very fancy shmancy.
It has those grips that will tell you your heartrate, which is great for him. well probably good for anyone.
Now I have no excuse not to exercise. I'm looking forward to getting back into shape, cardio/stamina wise.
When I was working as a Visiting Nurse I often had patients in highrise apt bldgs. Because the elevators were always slow and often stinky, I always took the stairs. Climbing 10-12 flights at a time and usually 2-3 times per day, while carrying my 20 lb bag. I didn't realize what good shape I was in.
Now even hustling through a big parking lot my legs are aching.

Another incentive, my 20th high school reunion is this November. I want to be able to go without being paralyzed w/ self doubt. I really don't want to spend the night fidgeting with my clothes, adjusting my position, and belittling myself.

Sara Lou is doing great her first couple of weeks of 7th grade behind her she is back in the groove again. She is an amazing child and I am so grateful that she is in such a great environment school wise. Pre-K through 8th grade their are a total of 182 students in the school. There are 23 kids in her class. She has been there since kindergarten and many of her classmates have been as well. They all grew up together, it's really nice.

Well just a quick post but I'm feeling positive and less stressed which is a very welcome break from my normal anxious state.

Woo Hoo

Friday, September 12, 2008

looking up

Things are looking up. How can they not?
Not sure if I shared this already but Shawn recently came into possession if a Vest, for non-Cf'ers, it is an inflatable vest that simulates tiny coughs that move the mucus that is deep in the small airways of the lungs up and into the larger airways where it can hopefully be coughed up and out. In short it can be very beneficial. We had no idea just how good it could be.
Shawn has been using it faithfully for the last six days, he has had incredible results. He brings up good amounts of crap. Crap that NEVER moves. He has chest PT each day and that does NOTHING for him, NOTHING. He has had CPT for the last six months and nothing.

He had used the vest a couple of times at Mass General, but it was basically dragged into the room, he donned and adjusted the vest, the tech or whoever put it on one setting, one pressure and left him for 15 minutes. It was too tight, he couldn't breathe and was ready to puke. Needless to say he was discouraged by the experience.

It was only when I read a blog "noexcuses" by a fellow CF'er did I learn that there were specific settings etc. Another CF'er gave us the vest, we followed the reccomendations on Dr.Warwick's site and waalah.. Shawn is happy as a pig in shit!
He actually sees "something" happen as a result of a treatment.

This I'm sure doesn't sound like huge news, but it is for us.

Anything that helps him is big news for us.
He is encouraged, motivated and feels like he has some control. Something that HE does is actually helping. Also the fact that this is a result of a fellow CF'er and not a doctor is also huge.
He has actually joined the CF2chat website, and started his own CF blog. It's amazing, i am so proud of him.

He is finally engaging. Finally taking initiative. Finally he has hope.
I couldn't be happier.

SO...THANKS TO CF2CHAT, KBN, NOEXCUSES, QUOOF !!!!!

Actually it has been all of the people on Cf2chat that have helped him get to where he is.

They have been our greatest support, and resource.

Maybe it is strange, although probably not too strange, but these people are my friends.
They are our friends and thank God for them.


So today is a good day!!!!!!!

Something interesting, I used to belong to another CF website, they were commercial, finacialy motivated and deleted the information that I preened from the NoExcuses blog.
Informational that has helped my husband.
Shame on them.

Tuesday, September 9, 2008

Trying

Shawn and I are pretty dysfunctional I guess.
When CF is concerned, so I guess that's pretty much all of the time

Tuesday, September 2, 2008

CF'ers read at your own risk: I'm blowing off steam

I feel like shit.
I feel like all the wind was taken out of my sails.
The punched in the stomach, heart sinking, air out of your balloon.
That feeling.
I feel it for Shawn.

That feeling you would get if the kids at school left you out, when you thought you were in.

I am quite certain that my reaction is an exaggerated response. I know in my logical mind that my visceral reaction is a poor match for the catalyst.

So, please with that being said... ("With all due respect...I said with all due respect" *a line from 'Taladega Nights' Ha Ha)

Oh Fuck you!

I know that when you have CF you have to protect your health as much as possible. Avoid picking up bugs to the best of your ability. It's your responsibility to yourself and those that love you to do your best.

I'm a nurse I know and understand that. But it sucks. It sucks when your on the icky end of it.

What provoked this rant?
Well there was going to be a meet-up of Cf'ers from the east coast, adult CF'ers. Shawn has been colonized w/ MRSA. A dangerous "superbug" that reeks havoc on Cf'ers. Soooo, it was decided that pt colonized w/ MRSA would not be able to attend the meet-up. I understand the rationale. I understand that it is the smart and respectful thing to do. I understand but it still sucks.


In the non-Cf world
where Shawn is stared at for wearing oxygen, where he can't participate in most things and people don't understand why, where he is different from everyone else, where he questions his own worth, because he can't support his family any longer, because he can't be the adventurous crazy Dad he was, because he isn't the same husband and lover. In the world where he feel "less than", being excluded from that world, the non-CF world, that sucks.

But in the CF world
he's one of many just like him, others who understand why he coughs that way, why he might talk in short bursts, why he's slim, why he has to walk slower than everyone else, why he can't breathe after pigging out, why he has clubbed fingers. In the CF world, I'm sure it is still somewhat disturbing to see a guy his age on O2, especially when other than the cannula he looks so good, but it doesn't freak you guys out. It's all par for the course.

I wanted Shawn to have that. I wanted him to feel normal and accepted.

So being excluded in that world, the CF world, that really sucks.

I feel for him and it breaks my heart.

Part V - Our introduction to the real CF world.

This past October Shawn was put on O2, in Dec he was in the hospital for 2 wks then home for 2 wks of IV meds. In January we met w/ Dr. S @ MGH. Our first CF doctor. In February Shawn was admitted to MGH w/ an FEV1 of 18%, and weighing 134lbs. Cf had finally caught up with him.
All of the things I had tried to do to help him had backfired. I feel largely responsible for his decline.


We have been led to believe that adult CF'ers were rare and the ones that were around were only around because of medical/pharmaceutical/surgical interventions.

I believe that is in part true but I believe it is the fact that CF'ers as adults can seek out information, question their doctors, make suggestion, ie: take an active part in their own plan of care, that truly is of benefit to them.

In March we signed up for Internet service. I suddenly have a plethora of information/research at my fingertips.
When I relay information to my husbands doctors,PT's, nutritionists etc that I have discovered through an adult CF'er I've met on the Internet the info is immediately dismissed. Quackery.

I often feel like it is us against them.

I finally feel that I am not the only one who questions the "authority".

Part IV My Plan

O.K. So sooner or later I believed his work would catch up to him.

I felt he needed to be protected, he needed to take it easy, he shouldn't over exert himself, he needed to limit his exposure to bacteria. He should work less, enjoy his time more.

I hatched a plan.
Things changed. For the Worse

Mistake #1.
Shawn became a plumber. His work was no longer as physically strenuous. His hours were decreased to a reg 40 hr wk. He was no longer exposed to the same bacteria, his body was not challenged in that way.
He was no longer working with a group of young, mostly married, very physical guys. The shop was not a fun place to be.

Mistake #2.
After nearly 4 yrs ( and his perfect health), we moved out of our beach house and into my mother's home, at her insistance to save money and to help her w/ the upkeep on her very large home. The stress of living there was unbelievable. My husband was always trying to keep the peace, and always trying to please my mother. We were always in the way. Our things were always in the way. We felt unwelcome and unwanted. We quickly saved up money to move out, we would rent. I was becoming depressed and Shawn was stressed.

Mistake #3
In May of 2004 while still looking for a new place, my husband "gifted" me Lasik for my birthday. He was always trying to fix things, to get me out of my funk.
Unfortunately the surgery did not go well. I was rendered blind for 4 wks due to undiagnosed infections and poor quality care. I was out of work from May through August. It was avery difficult time for us. My depression only worsened. Shawn was taking it bad as well. He felt guilty. In August I took on a new job.

Mistake #4
In the fall of 04 the opportunity to buy our own home came up . It was a friend of Shawn's grandmother. Her husband had died 18yrs earlier and at that time, she up and left the house. It remained in that exact state for nearly 20 years. Beds made, sugar in the sugar bowl, a calender from 1986 hung on the wall. A virtual time warp.
We knew it needed a major overhaul.
The house was appraised by the bank for 319,000. We offered her 225,000. She accepted.
We were both in great health. We assumed that we would continue working, making good money, update the house as we went along, no rush, no problem we were both handy, eager and neither of us shyed away from hard work.
We jumped in

This I believe was the biggest mistake we made and has been our undoing.


Shawn was healthy when we moved in.
Within weeks of moving in, Shawn was hospitalized for the first time in his life. Over the last almost 4 yrs Shawn has been plagued with worsening health. A few 24-48 hour inpt stays for resp infections, a few outpt courses of oral abx, random prednisone tapers, misc inhalers. A slow but steady decline in his health, his weight and ultimately his quality of life.

We have changed the heating, electrical and plumbing. Remodeled the bathroom. Stripped and painted all but one room. This past February while Shawn was hospitalized for 4 wks, our friends and I got together gutted and remodeled the kitchen. Of course there is the esthetic value of all this but more importantly these updates had to be made for his health. In the beginning he could help, but he has just gotten sicker and sicker. I have to do it myself. Money has gotten tighter and tighter.
The wallpaper was disintergrating off the walls, the heating ductwork was filled with 40+ years of dust and whatever else was in there, the kitchen ceiling had a squirrels nest above it, literally draining through the plaster into our kitchen. We thought it was a leak. The walls and ceilings are all made of horsehair plaster. The basement, has a painted floor, and concrete/cinderblock flaking/crumbling walls. I found a heavy leak under cabinetry where the washer was draining, the interior of the cabinet was covered in black mold. There is lead paint, aspestos wrapped heating ducts to second floor, a leaky roof and unfinished raw closets/crawlspaces that are forever producing a fine layer of brownish crap.

During all of this I am constantly trying to make this place livable for him. Constant cleaning, dusting, washing, air purifiers, de-humdifiers in basement, humidifiers upstairs because the forced hot air makes it too dry.

Selling it was our first instinct. We thought we would be able to remodel and sell. But one thing led to another, there was always more repairs to be made.

We were desperately trying to fix the house enough to make it healthy for Shawn to be here, while we try to sell it.

Now we are at the point that we are broke, there is not another penny to sink into this house. There is not enough money or time to make this house healthy for us.
Shawn is losing ground everyday and we have to get out.

Part III Life after diagnosis

Copacetic

After diagnosis Shawn continued to live life just as he always had. We continued to live just as we always had.

Shawn remained approx 180 lbs. Very well built.
He continued to work 40,50, and often 60 hrs a week all hours of the day and night in all the weather variables New England has to offer. He worked in the very strenuous and germy profession of drain cleaning. Dragging often 100+ lbs of equipment up stairs, down alleys and down holes.

Drain cleaners are the unfortunate bastards who come to your rescue at all hours of the day and night when raw sewage is dumping into your basement, or your main is blocked and water comes out everywhere above it, they're the guys who crawl under your homes through God knows what to find the broken pipe.

Did I mention it was a disgusting germy job?

He had to have been challenging his immune system every day. Yet he was never sick. Never. His various cuts and scrapes obtained on the job healed beautifully.

There was also a "brotherhood" of sorts @ the shop. It was a motley crue made up of young single guys and young married guys. The guys were always horsing around,there were pull-up or push-up challenges, vicious games of hackey-sack etc. They were very physical even in their "down-time".
He had an especially close relationship with the boss, who was a friend and mentor to Shawn. Shawn felt like a member of a family. We played together, traveled together, worked together.

We lived on the ocean, spent time in our boat, on the jet-ski, walking to the breakfast shop on weekends. In the fall we went apple picking, the winter we skied, went tubing, shoveled driveways. He was a normal healthy guy.
He had no limitations. My Shawn.

All the while in the back of my nurse's mind I kept thinking this job can't be "good" him. It can't be good for a person with CF. Surely it was only a matter of time before he got sick with some horrific bug picked up from the filth he worked with. It was only a matter of time before his luck ran out.

Tick-tock...tick-tock...tick-tock... What kind of a wife, what kind of a nurse would allow such clearly hazardous behavior. He was doing all the wrong things.

I had to
save him.
Save him from his certain death, his untimely demise if he continued living so hard and dangerously.
Working hard, exposing himself to oodles of germs, heavy lifting, rough housing in such close quarters, eeeek and with other guys who were usually covered in the same filth that he was!!!

I had to come up with a plan.
So I did.

Part II The Diagnosis

O.K. where were we?

Oh yes, late 1999, Shawn was working like a dog as usual, I was immerse in nursing school, still hellbent on getting a doctor to take me seriously. We were raising our 4 yr old dgtr, and oh yeah planning our wedding which was set for June 11th of 2000.

In January of 2000, we rented and moved into a beautiful single family home ON the ocean We were on a peninsula, the water came up to our back yard and the beach was across the street in front of the house. Ocean air rushed directly through our home, front to back. We could watch the sunrise and the sunset everyday. It was beautiful. Our lives felt perfect.

In January we also found a pulmonologist, Dr O. who had diagnosed a man over the age of 50 with CF.
I contacted him, he agreed to meet Shawn and then he simply sent Shawn to Children's Hospital for the "sweat test".

Our lives changed.

On February 14th of 2000 the results were in. While I was studying in my school library, Shawn called me, he said he had been called with results from the sweat test.

Shawn said "Babe, they said it was abnormal. Babe, what does that mean?"

It was horrible.

In that instant, it was unbearable.
I knew what the diagnosis of CF carried with it.
I never so badly wanted to take something back. Why had I been so stubborn, why did I push this, why couldn't I have dropped it. Why was it so important to me to be right.
I was handing him a death sentence.
I was responsible for causing him pain, I was hurting him. I was hurting this wonderful man, he was the ideal father, friend, and lover. He was soon to be my husband. I felt like a horrible person.

Over the next few weeks, they completed his genetic testing. He had a definitive diagnosis of Cystic Fibrosis.
After additional testing it was determined that his body was functioning very well. He had no need for additional treatment. We were cautioned to look out for s/s of respiratory infection, pancreatic insufficiency, etc. He was instructed to continue working, exercising, eating well etc. Normal things.
Shawn seemed to me, pretty oblivious to the implications of a CF diagnosis. He continued to live as he always had. To Shawn it was more like having a name for his allergies.

Interestingly, after our living on the ocean for a only a few months, I noticed Shawn didn't cough anymore. He never coughed and he had gained about 5-10lbs. Life was good. We were all happy and prospering. I felt like perhaps he had dodged a bullet. I was content to let this sleeping dog lie.

On June 11'th we were married. The happiest day of our lives.

Shawn's CF Story

Shawn did not "grow-up" with CF. Not knowingly.

Shawn remained undiagnosed until he was 27.

His childhood health was not far from the norm, health wise. Ear infections that ultimately led to tubes being placed, tonsils, and adenoids removed. Not uncommon in "normal" children. He had normal growth, wt gain, puberty etc. He played baseball, rode ATV's, led a normal active guys life. A persistent spasmodic cough he developed was explained away by the fact that his home was heated with a wood burning stove. At 15 he was diagnosed with asthma and allergies, given an inhaler and told to stay away from cut grass, pollen, dust, dander, etc.
Standard everyday common allergens.

Shawn never behaved any different from his friends.

From age 15-21 Shawn lived part of the time on The Gulf Coast in Naples Florida and part of his time in Boston. He always worked hard no matter where he lived, no desk jobs for this guy.

Shawn moved back up North in late 95 and our relationship began in early 1996, he was 22.
He coughed sometimes, mostly after a laughing fit, or after having water or saliva "go down the wrong way", but he told me he had asthma, I was satisfied with that. What the hell did I know.

Our relationship progressed. Shawn, Sara and I lived in an apartment together for the next 4 yrs. Most of that time spent in blissful ignorance of CF.
His cough always made me wonder though. Now that we were living together I realized that he woke up coughing at night, and that in the mornings he was always coughing and spitting. Gross!

I asked him to see his doctor. He did. His doctor said he had asthma. End of story.

I didn't believe that doctor. No tests were done, he had simply reiterated what was already a documented diagnosis for Shawn.

I became irritated that his symptoms were brushed off. That he was being brushed off.

I started going to librabries, book stores, anywhere that I could get my hands on info related to a wierd cough. After hours and hours of research and a major process of elimination I felt like I had narrowed down the possibilities to emphysema and CF.
Neither one fit perfectly.
The emphysema didn't fit because, I felt he was too young, he didn't smoke, no environmental hazards, he wasn't barrel chested, emaciated etc. But he did have that disgusting productive cough.

The CF didn't fit because he was "too" old, he wasn't sick enough, he didn't have digestive issues, he had developed physically normal, he seemed too healthy. But again, he had that disgusting productive cough.

Trying to get him diagnosed we went through two other pulmonologists, PFT's were done, the diagnosis was "mild obstructive asthma" . Both of these doctors flat out refused to test him for CF. The suggestion was ridiculous to them.

During this time I decided to go to school and become a nurse. I felt like I wasn't being taken seriously because I was without the proper credentials. I was frustrated that these Dr's had this much "power".

Disgusted by their inability to even entertain the idea that they might be wrong.

Monday, September 1, 2008

A Good Day

I am having a hard time with the daily fluctuations in Shawn's health. Everyday there are so many variables that play into how Shawn feels. The temp, humidity, barometric pressure, air quality/pollen/ozone etc, how he slept, what he eats, hydration, scents/perfumes/laundry detergents, animals, stress etc.
I can't see what's coming next. It's too unpredictable.

I feel like I have so many loose ends. I don't have a plan. I need some direction.


It's not just Shawn either, I'm too up and down, I don't know how much is me and how much is real.

I feel like I am drowning.


On a good note...This morning we got up and went for a ride on the bike. Met up with the usual suspects @ the coffee shop. Today I met a woman a few years older than myself who has battled with breast cancer for the last year, she is now "clean", but still on maintenance meds.
We also met a woman who organizes charity/benefit rides and generously offered her help to plan ours.

So Blah to me for being a downer.

I have my husband and my daughter and I need to focus on enjoying us and not taking every frickin thing to heart.

Good, I have talked myself out of a blue mood!!!!

Overwhelmed

Slept like crap last night, could not shut my mind down.
We met up with our friends for ice-cream last night, it was great.
Shawn got a ton of compliments on his bike, and not just from little boys "OOOOOO cool bike mister."
These were guys who new their stuff so I was happy for him. Happy that even with his oxygen cannula hanging off his face he could be one of the guys, and a cool one to boot.

So my mind is not focusing well. I have so many things to start or finish, so many cards to write, telephone calls to make, appointments to be scheduled, I don't ever feel like I get anything accomplished.
I need to make smart decisions for Shawn. I can't fuck this up. He's depending on me.

Trying to sort through research and decide on a plan for him, treatments, evals etc. I wish he was as interested in this as I am.
He just wants to breathe.

Sunday, August 31, 2008

Better Days

Well we had a great early weekend.
Shawn, Sara Lou and I spent a couple of nights @ our friend's place up on the lake. Some well deserved R&R spent with good friends and family.

Good friends + barbecue + hot-tub + 4-wheeling + boating + sunshine= perfect weekend

It was a stress free weekend once we left our driveway.

Now we're home, back to the grind. I'm going to try and carry those peaceful feelings into the week.
Sara Lou starts school on Tuesday, we still have to get supplies!!!!

Shawn looks great, he's been out riding since we got home. It makes him so happy.
I love him

Still frustrated with his apathy re CF.

Fun news: we're meeting up w/ our new friends, Joe and Kim, for ice cream tonight.

There's going to be a meet-up in NYC, I really want to go, seeing if we can work something out to make it happen. I feel like I need help from "them" with Shawn.
This is crazy sometimes.

Some days I just don't know what the hell I'm doing.

Monday, August 25, 2008

Why do I have to be really pissed?

Sometimes he makes me nuts.
Why do I have to be totally pissed, disgusted, beaten down or utterly exhausted before he will do something?

We had prescriptions to be picked up, we as in Shawn and I both had scripts that needed to be picked up. I have been asking him to pick them up.
Excuses, excuses, procrastinate, whine, ignore, and whine some more.
His main excuse is "It is such a huge effort for me, get my tanks, walk through the store, get out of breath etc, it's so much easier for you"
Tonight once I got good and pissed, logged out of chat, chg'd my clothes, threw on my shoes, grabbed my purse and headed for the door he sprung into action. Suddenly he was going to go all along.
AHHHHHHH!
So we went together.

What the hell is that? For the love of Pete! I do the lion's share of the work around here, there are not many things I ask of him, that is a task that he can complete. He is not going to drop dead from the effort. He HATES to get SOB. He avoids it at all costs. No wonder he is in the shitty shape that he is in. Exercise Ha!

I just hit him below the belt, almost literally.
This is going to be adult in nature so look away if you must.
Shawn and I have always had a very dynamic physical relationship, if you know what I mean, hubba hubba.
Tonight I told him that I was not ready for that to end. I don't want to know that we will never have that again. That the last big bang so to speak has already happened.

I think I saw a light bulb go off in his head or at least saw some sparks and some smoke.

Maybe that will give him some motivation.

All joking aside, it's true. I miss him in that way.
I love him of course regardless, but I'd be lying if I said it didn't matter at all.

Anyhoo, that's my rant for the night.

CF free day

Shawn declared Sunday to be a CF free day.
He was very good about it but on Saturday he made it very clear that on Sunday he did not want to discuss anything CF related. I could not mention any research that I had dug up, or doctors, treatments, transplant related issues, allergies, my obsessive cleaning, his dietary habits etc.

He needed a day off and I must say that ultimately it was a relief.

I guess I had not realized how our lives had been consumed by CF. My mind has been preoccupied with his health for so long that I initially had a type of withdrawal. Things kept popping in to my head and it took a concerted effort to push those thoughts away.

Don't get me wrong, he took his meds/nebs but the whole regime was completed in a very gentle manner.
Rather than laying all of his meds/supplements out on the table, I put them into a delicate crystal shot glass.
His HTS which he has been having a hard time with I diluted with normal saline, this resulted in an approx 5% mixture which he tolerated very well.
He was compliant without "discussion" which has not happened in a very long time.
That was really nice, for all of us.

So, on with our day.
Sara was off by 11 to a birthday party with our neighbors/friends/often lifesavers The J's.
Shawn and I set off on the bike. We went for a very long ride.
While the bike is in motion, Shawn does not need supplemental oxygen. My theory is that due to the CPAP ( continuous positive airway pressure) effect his body obtains the oxygen required.

We rode to our usual first stop, Honey Dew donuts @ the head of the lake. This is a very popular "watering hole" for a large group of bikers. Friends of Bill W's I believe.
We had our ice coffee's, actually Shawn had his I dumped mine accidentally and was mortified.

Any hoo off we went. Riding up long winding back roads all the way up through Topsfield, Newburyport up up into Salisbury Beach.
The hub bub of end of summer was in the air. It was beautiful just passing through.

Shawn took the highway back home. Now don't get me wrong I love being out on the highway, especially on that beast but man my ass was so numb I could not tell where it was on the seat after a while. I'm no wimp. My seat is only about an inch of cushion resting on top of the rear fender. Vibration is an issue.

We left around noon and got home just after 5, good day of riding.

It was a wonderful Sunday spent with my husband. Just Shawn. Not CF Shawn. Just Shawn, my Shawn.

The evening was just as lovely. Our Sara Lou arrived home shortly after Shawn and I. Sara Lou helped prepare dinner, a fresh salad made up of produce from the Farmer's Market, linguine, meatballs, sausages, and good Italian bread.
What a feast!

We ended the evening with Sara chit chatting away in bed with us before retiring to her own bed and her books. That is my favorite time. The three of us jumbled up on the bed, talking, giggling and yawning. I love that time.

A great ending to a great day

Friday, August 22, 2008

incompetence

First- Well I don't have to be struck down by lightning to get that we do not belong @ MGH.
In addition to the very long list of things we see as sub-standard care, today a new one and the final straw. the final step in the transplant eval process is his psyche eval.
The psyche Dr.P does not have a secretary so in order to make an appt there is a lot of phone tag. The initial appt which was made while he was inpt back in Feb/March for April Shawn had to cancel, I can't remember why exactly.
Then there was phone calls back and forth trying to reschedule, another appt was set for May which she had to cancel, then more phone tag and another appt which was made for July.
He ended up inpatient, she popped her head in the door introduced herself but said she could not see him d/t some emergency. She reassured him that this would not hold up his transplant eval. A new appt was scheduled for today.
When he arrived, no Dr.P. Apparently she was on vacation and several patients had shown up for appt's which she had failed to notify, cancel and reschedule.
Shawn proceded to medical records, picked up a hard copy of his entire record and came home.

One good thing was I got to spend the day reading and disecting his record. Amazing how many errors can be found and how dangerous some of those can be. Any hoo made for some great reading. I loved reading between the lines.

I also discovered that when he was at his best in 2/04 ie working 60-80 hrs per wk, 175 lbs, totally asymptomatic his FEV1% was only 56%/2.47 L. How the hell did he manage that? I never saw him SOB. How long did it take him to get there and how amazing that his body adapted. his O2 sats were always 90-92%.

Now 8/13 he was 24%/1.07L, FVC 36%/1.98 his O2 sats on 4L are 90-93% @ rest.

Crazy shit
This CF is crazy shit.


Second- Hi Kori thanks for the comment, makes me feel so official. Love my Boston..see the picture isn't he handsome?

Right now, there is a beautiful blue sky and Shawn is out happily riding his motorcycle having a good day. I love to see him happy and at peace.

Wednesday, August 20, 2008

Real life Cf'er

Oh very exciting day today!

My husband and I met w/ a fellow CF'er and her husband this afternoon. It was a very positive and encouraging meeting.
I have a ton to say but, I happen to be really pooped out now but I will post more regarding that grand event tomorrow. Hee hee

I also found out that some people from our chat, have checked out my blog. I felt validated in some weird way.
Making our way in this new CF world has been difficult for us, he was a late bloomer so to speak and especially since we have only had Internet since this past March, we have been very isolated.

Being able to communicate and share w/ others in the same boat has been huge for us.
I am very grateful for the acceptance and support

Feeling better

Well, I spent a lot of time cleaning my house a couple of days ago and I'd like to think it is responsible for an improvement in Shawn's health. I would like to believe all of that work is not in vain.

O.K. so I don't mean that my house is normally "dirty", it's just that with someone like Shawn, any amount of dust/dander/pollen in the house is too much. Soooo..dusting, vacuuming, and washing every surface including all linens, curtains, blinds and upholstered furniture is very time consuming and exhausting.

He feels better though. Yesterday he was out on that bike literally all day long w/ O2 but that's o.k. Today he went out on the bike without O2 and he looked great, when he stopped, he rested and recovered without O2.
Now of course if he was to get up and move around, I'm assuming he'd tank out but he was able to carry on a decent conversation.

Tonight we met w/ friends for dinner and I noticed that with all of the distractions and with all of his yapping and eating he never appeared to be SOB ( he had his O2 on but @ only 3 L) .

I don't know what to say or how to explain his ups and downs. Maybe it's common, I don't know.
If I didn't have copies of all his PFT's and I didn't live with him everyday I would wonder if he was exxagerating at times. EEKS sorry if he ever reads this.

How much is influenced by environment, diet, sleep, stress etc.?

There seems to be a direct correlation between his stress level and his well-being, more than normal. He's very psychosomatic.

Exciting news... Tomorrow we are going to meet our very first live CF'er and her husband! I am so excited, for Shawn and myself. I know for myself to communicate w/ others via the Internet who are dealing with CF ( which has only been since this past March) has been VERY helpful. I think for Shawn this is going to be beneficial. Might give him a kick in the ass too.
It will be good for him to see how hard CF'ers fight for their health and that it is cherished!

Off to bed but wanted to share my excitement!!

Sunday, August 17, 2008

SOB

Last night Shawn had a rough time. He couldn't keep his O2 sats out of the 80's. He was very SOB and his anxiety was through the roof. I hate to see him like that, fighting to breathe. I wanted him to have some relief.
It's horrible to watch him, I feel so helpless, useless.

During the day he went to the mall w/ Sara. He called me because he felt very SOB. Once he got into his truck he switched from the "stroller" to a tank and he immediately felt better.
Last night, he became convinced that his concentrator was not putting out O2. I hooked him up to a tank and once again he felt better, his O2 sats climbed into the 90's.
I hooked him up to the liquid O2 for the night and he slept soundly.

Shawn is very impressionable. When somebody tells him he is very sick, he declines. When I convince him that he is getting better or give him a vitamin and tell him it is a powerful bronchodilator, he breathes better and has better O2 sats.

There was a point in May where he was totally off of O2, maintaining sats in the 90's, out riding his motorcycle everyday, going into pulmonary rehab w/out his O2 on. His therapist would scold him each time. He used it during pulm rehab, but turned it off when he left. Shawn did this for almost two weeks. He felt great, looked great and had a great attitude.
He showed up for pulmonary rehab and his therapist hammered him. He told Shawn that he was doing damage to his heart and would cause heart failure. He was very serious and very menacing.
Shawn came home depressed. He told me what had happened and that he didn't realize how bad he was. He decided he was going to go back to wearing the oxygen because he was deathly afraid of causing heart failure.
The wind was taken out of his sails, he suddenly looked frail.
He has had the O2 on since. Except while he rides, the CPAP effect allows himto go w/out O2 an d he can stop for coffee etc for about 20 minutes before needing to get going again.

Now that the dr.s have made transplant so real to him, he is depressed and suddenly SOB constantly. He is even wearing it on his motorcycle. I feel so badly for him.

I admire him for his determination to ride that bike. Everybody stares of course, who wouldn't. Here comes this guy on a big loud bike and he has a nasal canula on his face.
I told him today, "Babe, you know that now you are that guy. You are the guy that people will say, "That's that guy who rides w/ oxygen" I think it's a compliment, he has some serious balls!

The feeling of freedom riding is unbelievable. I wouldn't trade that bike for anything.