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.


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


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.


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


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


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!!!!


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.