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.

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

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.

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!!

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.

O.K. I have a few more minutes to myself.

Like I was saying, I don't feel like I am ready for this. I know he's sick, I know he can't breathe, I know his quality of life is in the toilet but still I feel like it's not time yet.
I am afraid. I feel scattered all over the place. There are so many things that I wanted to have done before the transplant.

I don't want him to come home to a "sick" house.
I wanted him to come home to a clean place. This isn't it.
We are drowning here. I can not do this by myself, but I have no choice.
I need to get rid of everything. All of the old furniture that was here when we bought the place, the tools, the misc crap.

You know what, none of these entries make any sense to me.
They feel disjointed, there is no flow to them.

I suppose my head probably looks much the same.

I'm going to cook dinner for my Babe.

Let's see.. where to begin. I have been walking around in a "detatched" sort of state for the last few days. I'm not sure how else to describe it.

This past wed we had our appt @ Childrens, w/ Dr.D. and I guess the reality is that Shawn is "end-stage" and he need a dbl lung transplant. Sooner rather than later. Given his "score" he will be high on the list and she estimates the transplant will happen in two weeks to four months.
I'm not ready for this.

I feel like I need to blog "the story" of Shawn's diagnosis. I have done this once before on CF.com, unfortunately it was deleted by the administration. I guess they found it objectionable on some level. I don't care anymore. I was outraged over this initally, I don't like somebody or some entity having that much power over me. I now realize it was my mistake. I should have known better.
So I have to dredge it up again. Not right now though but soon.

Booted

Here I am blogging on my new blog, how very exciting.

Some of you may know me from my previous blog site @ a CF website. Here is an explanation of why I am no longer there.

I became more and more disenchanted with that particular site due to the deletion and banning/booting of some very important and influential members.
Members that although I do not know personally or in a face to face traditional manner, I had grown quite fond of.
These are folks who had a lot to offer. They were outspoken, pro-active, articulate, frank, saucy, lively, and welcoming.
I felt an immediate kinship with them. I felt honored to know them
For all of these reasons they were banned from the site.

I was getting more and more distressed over the situation, it became clear to me that this site was not merely banning folks, they were harming the very population that the site was designed to help.
I made the choice to speak my mind about this situation. I discovered the next day that I too had been booted.

Everything that I had ever posted on that site was deleted. All of my blog posts were gone.

Everything.

Shame on them.

I have always advocated strongly for my own patients, for my husband, for my friends and I will continue to do so.
Knowledge is power. We are intelligent individuals who are capable of making decisions in our own best interests. I believe we know our bodies better than anyone. Better than anyone and that includes folks with fancy initials following thier names and folks with fancy titles.

So here I am creating this new safe blog. Here where I can say whatever I like.

This post may be boring to alot of people but for those of you who are familiar to the circumstances, I wanted to give an explanation.

So poop on them..............Ha Ha Ha Ha Ha !

See you in chat!