twenty twenty twenty four hours to go... I wanna be sedated

I've been meaning to write my "story" about getting sick and all that went down at the beginning of the month but I have just been lazy. No, that's not entirely true, I have been on oxygen and IVs and doing ALL THE TREATMENTS and just pretty worn out at the end of the day with not much incentive to write.

So...I have to go back to the end of March to really begin. Maybe all the way back to November. In November I had this crazy pain in my right lung. It was almost intolerable though I did tolerate it for about 10 days because I knew I had a clinic visit coming up and I try not to do ANYTHING remotely CF related outside of my clinic because, for you non-CFers out there - the medical profession at large really knows very very little about CF and you wind up in a big cluster fuck of nonsense of you try to get anything accomplished without your CF team on board.

 Anyway, I had an x-ray which demonstrated a right middle lobe atelectasis (basically it's like a collapsed lobe) and I had my first bronchoscopy. I think this was in November...maybe it was in January? I was definitely in the hospital in November and January (and March and April/May), though my timing might be off here. Either way, I ended up admitted again in January for the SAME infection.
My normal routine is to go into the hospital where I am desensitized to the antibiotics I need because I am allergic to them and then I finish up the course of abx at home. During my Jan admission I desatted during my sleep and required supplemental oxygen - which isn't weird for a sick CFer, but I didn't know it was going to be a thing.

Then it was March and I was sick, again. Once again, I put things off until I had my clinic appointment. I had my usual pulmonary function test and my FEV1 was 35%!! My baseline is about 55% so that's a significant dip. My doc ordered a CT, another bronch, and an admission for more IVs. The thing was, I had plans to go to CA the beginning of April that I wasn't willing to put off. Quality over quantity I rationalized. I did have the CT before I left.

CA wasn't that fun, simply because I felt like SHIT. I was so damn tired the entire time. I was almost relieved to be going to the hospital and I actually stayed for 4 days instead of my usual 24 hours. It was at this time that my need for continuous O2 was discovered. My oxygen sats actually went down to 77% at one point before I was put on 3L of O2. I was not taken off the O2 upon being released from the hospital and was told the only way I was going home was to go home with oxygen.
Wearing O2 and carrying a tank with you everywhere you go SUCKS. And it's pretty hard to convince your family that your OK when you have an oxygen cannula stuck to your face. So once I was realeased, I found myself resisting going places more and more. Which was OK because I really wasn't feeling well still. at.all.

My doc put me on an IV med called Meropenem, an inhaled med called Cayston, and an oral antibiotic called Zyvox. Zyvox is a nasty drug. It gave me terrible lethargy and the worst diarrhea of my life. I chalked feeling so poorly up to that medicine. As well, I found that if I wore the O2 at home and in the car, I really didn't feel THAT BAD if I took it off to run into the grocery store or the kids' schools. haha. little did I know.

So on Thursday, April 25th (I think), Miss M had a "Muffins for Moms" event at her school. I was there for about an hour and I left the O2 in the car.

I am going to back up a tiny bit to complain for a minute. My family were kind of dicks to me during this time. I asked for help a few times and mentioned more than once that I just wasn't feeling well and I was told to "step it up" and "quit complaining" by two of my family members. In their defense, I have spent the last 35 years pretending everything is fine, even when it hasn't been, so they really didn't know. But I mention that because 1) it comes into play about how I feel regarding fam later and 2) I was pushing myself really hard to feel that I accomplished something during the daytime rather than having to face everyone and say NO, I didn't do the laundry, NO I didn't make dinner, NO I haven't swept the floors. Retrospectively, who gives a fuck, right? But I felt guilty about doing nothing all day.

So, anyway, after "Muffins for Moms" I went home, stuck on the O2 and proceeded to watch a bunch of "Arrested Development" episodes. About 1 that afternoon a friend stopped by. This friend was a boy but not a romantic boy. Still, when the doorbell rang my vanity kicked in, and I locked up the dog, hung the O2 cannula on the doorknob and answered the door.
My friend knew I was on O2 and even said that he could see the indentations from the cannula and asked why I took it off. I shrugged and said, "No big deal, you will only be here for a few minutes anyway." We both noted how out of breath I was. I could not seem to catch my breath and I lamented how weird that was, as I had been wearing the oxygen all day and had only gotten up to answer the door.
I decided I needed the O2 after all and went into the other room to get the cannula. By the time I sat back down my dexterity seemed to be impeded and I could not get the cannula over my ears. Then I noticed my friend seemed to be going in slow motion. I said something was wrong. Then I started to pass out. It was like I was the drunkest I have ever been. I could not keep my head up or eyes open and I was trying to hold the O2 to my nose because I still could not get it on. I told him he needed to call for help. I could hear and think just fine, but I could not react. It was like I was a little bit asleep and could not control my body. When we heard the ambulance, my friend tucked me into my table so that I would not fall and went to open the door. The problem was he caught my accessed port between me and the table and it hurt, so I tried to push away and ended up falling out of the table and onto the floor which is where the paramedics found me.

They gave me some oxygen via a c-pap (I think) and an Albuteral breathing treatment. After those two things I was alert and actually felt for a bit that I need not even bother with the hospital (ha! that is SOO me!) Nevertheless, I was taken to the ER. When I got there, luckily, the BEST RT was called and being familiar with CF, she had everything in motion: I received another breathing treatment, she called my CF doc (who heads the ICU at the hospital), I had an arterial blood gas drawn and was told fairly quickly that my CO2 levels were quite high (62.5) and so I got to wear the bi-pap Darth Vader mask from hell. This ended up causing a lot of my problems. So anyway.

Now my mom and dad and husband and kids had made it to the hospital. My parents were very worried, and while I understand why, they caused me a great deal of anxiety with how they reacted to the situation and new boundries MUST be drawn before anything like this ever happens again. I am a bit irritated still about how the situation was handled in the beginning. I want to reiterate that I have a HUGE loving and supportive family, but it was spearheaded by two people who have had very little interaction with my disease over the years, and thus were a little bit misinformed, and were too blinded by their own worry to think rationally. I don't blame them for this, but I'm lying if I don't admit to some resentment about how they acted when I needed them to be calm and cool.

Ok. so I was admitted to the ICU on the bi-pap and I was miserable. My RT wanted my bi-pap settings very high in order to eliminate some of the CO2 in my system but this was extremely uncomfortable for me. If you don't breathe with the bi-pap it feels like you cannot breathe at all. Occasionally I felt that the machine was making me hyperventilate and then my family was trying to come in and talk to me - which at times was fine, but occasionally I got so irate with them that I would start to panic. I'm also clausterphobic and the bi-pap mask was giving me a great deal of anxiety.

My mom called my entire family. I mean ENTIRE. My brother flew in from California, that's what I mean. And my step-mom called the minister from her and my dad's church. Can you imagine seeing this from my point of view? What exactly were they doing? What were the thinking? DId they know something I did not know? I was angry that they were all coming to say goodbye. No matter what they say ("we were just there to support you" - um no. Because if you wanted to support me you would not have made me a circus freak that you all stared at from the hallway), they were there in case I died. That was fucked up and it makes me mad. These words might be enough to make my family very upset with me, but the fact of the matter is my doctor never said anything remotely like, "She has 24 hours to live." It was all reactionary. and it did not calm me in any way. So, sorry guys. I love you, but next time, please wait for the death proclamation before rushing to my bedside in droves. Yes, I am a bitch. Sorry. I don't think my family reads my blog, so maybe they will remain oblivious to this? If not, all I'm saying is PLEASE LISTEN TO HOW I FEEL. Thank you.

So at this point everything gets hazy. I know that my abdomen became painful and distended and some of that was the bi-pap forcing so much air into me. I was miserable. I know I was given a shot of morphine at some point in the night with the hopes it would make me sleep. and I know my nurse that first night and I did not get along very well. I give her credit that she probably did all for me that she was allowed to do, but she just could not do enough to fix my misery and I was super annoyed with her. She did express her irritation with me unkindly though and I won't forget that trauma.

My sense of time is skewed, but at some point Friday afternoon I requested to be vented. I could not take the pain and anxiety any longer and I wanted to be sedated and oblivious. I think that this request came at the relief of much of the staff as I had initially been very against a vent. You know your sick and exhausted when things like a ventilator start to sound good.
The last thing I really remember was my doc saying, "So you want to be intubated?" and nurses pulling supplies out all over the place.

I'm told that I was then heavily sedated and put on the vent at 100% vent dependent. I remember nothing from that point until maybe Monday or Tuesday when they began turning down the vent and the sedative. then I was able to read some FB, write notes to people about what I wanted/needed, etc. Still, the notes that I was writing at that time, some are pretty funny and I have no idea what I was talking about.

Actually, I do remember on Sunday that my Infectious Disease doc changed my antibiotic...so I guess maybe I was a little bit aware. Anyway, by this time only my mom, dad, step-mom, and close friends were coming up to see me as well as my husband and the kids so though I sometimes found these visits exhausting, I wasn't irritated as I had been that first 24 hours. I do think and will probably always maintain that having visitors in the hospital sucks and your forced to give attention and energy to people who often don't give you a choice if you want to see them, they just show up. My friend Laura texted before she came, which was nice, and my kids wanted to see their mom, so I couldn't be upset about that, though they did tire me a bit. Still, I am lucky and loved and I have not lost sight of that. It would have been far worse to have no one come rather than to have too many people. My internet family really sustained me. The beauty of the internet is that you can deal with people when you want to, but there is no shortage of love and support either. I am so grateful for everyone who cared for me and prayed or sent intentions or whatever people do during these times. This was far harder, and will continue to be so, on my family than it was on me. Hell, I spent a good portion of the thing in propofol land with Michael Jackson.

My family, not completely understanding transplant, got it into their heads that TX is the logical next step. I'm pretty sure I am still too healthy for TX and I am certainly sure that I am NOT certain about TX. I KNOW I am not ready for TX yet, even if I was deemed worthy. No way. But I have been listening to a lot of TX and religious propaganda from my fam and it's hard not to be annoyed. I saw something I wrote on FB when my mom put a call out for prayers that I wrote that it "is their belief in the occult that is helping" and I know at one point I got mad at my dad and drew a 6 pointed star, lol, so feistiness never quite left the building and I haven't changed my ideas about any of that, no matter how much whispering they did in my sedated ears.

So, that's pretty much it. On Wednesday of the next week they significantly turned the vent down and on Thursday it was at only 5% and after my 150,000th ABG draw the tube was pulled (disgusting and horrifying) and then it was just a matter of hanging out. I was sent up to a regular floor Friday morning and was discharged Monday afternoon, 12 days after I went in.

I have been doing much much better. Today I went a few hours without O2 with no desatting and I have my follow up appointment next Thursday, the same day I start work on a new tattoo, a mermaid with the word "adapt" worked into the piece as an homage to life with CF and being a mom and wife and all these different hats I wear every day. I make them each work in whatever way I can.

doctor said he's comin' but you gotta pay him cash

Part of this was written about a month ago, the rest edited and added upon today.

La clinica.

Today was a strange visit. It was like a test, only they didn't know it. But after my hospital fiasco last month, I sorta wanted to know where I stand in the we-really-do-care-about-you line. To me, I want a doc who actually gives a fuck about me. I know there is a line that a lot of docs try not to cross so that they can see their patients in a mecial and treatbale way without letting personal opinion get in the way. But I think new medicine is hopefully trying to get past that and really see the patient as a person. So I have trouble going to docs who don't seem to give a shit. My rheumatolgist doesn't remember my name when she walks into the room whereas my ENT personally calls me to see how I'm doing. Who do I trust more? Sure, the rheum might be a genious, but she doesn't act like she cares. I guess I am a sucker for heart over brains.

anyway, so I've FINALLY met my out-of-pocket for the year (please pay for the hospital, thanks). So I switched my visit to today from Jan. That gives me, barring illness (~fingers crossed~), until March when I need to be seen again. We are literally drowning in medical bills, so the longer I can push things off, the better.

Anyhoo

(I don't say anyhoo ever in real life, but for some reason I seem to like to use it in writing. I wonder is this means that underneath, I really am the kind of person who would say anyhoo? I imagine that kind of person to be like Marty McFly. So I'm an inner Marty McFly),

my purpose today was to talk about my bowels (FUN!) and ask about what actually happens in my clinic when I go in for a tune up. I have managed - somehow - to avoid the 'traditional' CF tune up for 33 years. I was pondering today just how I managed to do that and I think I was a master avoider and liar. This makes it hard now that I am actually coming clean with how I truly feel. I feel like such a complainer and that people think I've deleoped hypochndria, but the truth is I've almost always felt this way, I just denied it and kept quiet.

Onward ho

So, there was a nursing student with my intake nurse and I totally crawled out of my shell and asked her, while my blood pressure was being taken (155/80 and then 135 over something - WTF is up with that? - I wonder if I was that out of breath coming up from outside that my heart was still racing?? oy) if she had any questions for me. and she did! and we talked about CF for a good 15 minutes (which is a lot in a med office, dontcha think?). She asked about the severity of my disease. I explained to her that while I am relatively healthy for my age, that my genetic make up is really no different than most the other patients she'd seen. I told her that as far as my version of CF and being "mild" goes that I think there is just a line from birth to death that a Cf patient takes (or anyone, hell) and we just all plot at different points on that line at different times.

Comparing my disease at 33 to someones elses at the same age is like apples and oranges. Instead, compare where we are - no matter our age - in the progression of the disease. It seems Cf can be sneaky, holding one person at bay with 25% lung function for years while another winds up vented and dead with a higher lung function in a quicker time.

She asked me what one thing I would want people to know in the medical field and I told her that I wanted people to hear what I was saying and to believe that I know my body. Also, the point of my visit was to establish that I truly need a good doctor/nurse - patient relationshsip established. With everyone farming people out to specialists for every ailment, you see a doc maybe for 10 minutes a year depending on the problem (like my dermatologist).

This is why I push my CF clinic to care for everything they can and will, be it my joints, intenstines - whatever. It's all related to that damn gene anyway, right? I mean, I don't want a pap from my CF doc, that would be awful, but I would like to be able to talk sex or birth control or incontinence without an immediate "let's get you into a specialist!"

It was a fruitful conversation and I felt good not just nodding pleasantly and wishing she'd move on, as is my tendency.

As for my doc. I'm working on him, but after being back in town for about 13 years and seeing him for that entire time, I have come to decide I like him. I hope we can carry our reltaionship out for the duration of my care, be that ending in death or TX (this does assume that he works as long as I live and I don't outlive his retirment. But that's not something to dwell on now, is it?).

But I was peeved that I didn' get much (any) hospital attention. I find myself becoming sort of a medical diva. Well, maybe I'm totally not a diva, but I am willing to be a lot more demanding than I ever was before. I can't let myself get swept under the rug. I don't think docs purposefully do this, there's just too many patients and too little time.

A doc here in town was thinking of opening a naturalist kind of medical center, incorporating herbal remedies, nutrition, acupuncture, yoga etc. with Western medicine. It was going to be a women's clinic. Of course all those natural extras would be out-of-pocket except for those lucky ones whose insurance covered something like that. That in turn greatly reduced the type of patient who would be able to afford such services. I was invited to a forum to discuss what this new women's center would look like, what services it might offer, and what wasimportant to the patient.

I kept lamenting insurance woes and how I fel they needed to fight insurances to try to cover some of these services such as acupuncture because otherwise it creates the inability for such a clinic to truly offer that kind of care to the masses. The concept presented by the staff was that this would be something new and exciting and the patient would be top dog. Without making it available to any who needs it, it just seemed to me like any other money making venture. It becomes elitist. This isn't necessarily bad save for the fact that none of the women present were overly wealthy or could outright afford for these services with any regularity.

The biggest suggestion all the women had on this panel was that they wanted a personal connection to their doctor. Many of them were there because they were patients of the doctor who wanted to open the clinic and were quite fond of him. The thing that irked me was if he was as great as they all put on, why wasn't be present at his own community panel? 'Cause the only person there was the manager or PR person, or whoever she was, hired to help get this thing up off the ground.

Where the hell was this great doctor everyone loved and who was so concerned with our opinions on his new medical spa or whatever? To me that stuck out like a sore thumb.

My goal for 2011 was to write more and be happier. This post may not adequately reflect my happy demeanor.

because blogs with photos are more fun:


Mi hijo last summer


Miss M in the hat I crocheted for her for the winter


proof that I'm happy. really.

take me to your leader

So. So. Um....

Clinic was last Friday. They did not have my bone density results (of course) and I had a massive fail on getting lab work done before, so not the most productive visit. I did feel very cared about though, something I have complained about with them before. They were quite concerned that I am not back to my old self post miss piggy. My doc ran something by me about viral myopathy which my google-fu fails me in finding good answers to that. I did get my labwork (blood, includng all vitamin levels and cholesterol (have not had that checked in YEARS)) and sputum done friday. had my bone density sent to them again and my last xray results as well, so if anyting is amiss, hopefully we will find it.

I am down to 118. I was 136.9 in March, so this is good, though of course everyone freaks out that I have been losing weight for 6 months. I am TRYING to people, even CFers can get big and can be vain. Anyway, I am Ok with 118, though I would not be sad if another 5 lbs or so slipped off - though I gotta say, I was glad I had some to spare during the big INFLUENZA debacle.

My PFTs were at 71, which is actually down from 74 and is also a week post IVS, which tells ME that something is still off, that or, as I suspected, H1N1 ate part of my lungs when it visited.

Last night when I nebbed and vested I had my first post IV welcome back mucoid PA moment, and today I swear fo' gawd I can feel it. I am tired and achey and just off. boo.

But I thik my 'tude is fixed, mostly. I am not in quite such a hole as I was, so that is good. I just want to "fix" whatever is wrong. I guess that prolly won't happen, not unless little green guys kidnap me and take me to their planet...or wait...I think I just spit a few of those guys out earlier. yum.

she's like a rainbow

We are in the midst of moving. boo. I don't mind unpaking - that is kinda fun, but packing and hauling heavy shit around - yuk.

I had clinic today. Mostly I just want to record what happened for my own records. So, according to them I have lost 11 lbs - yeah! according to me it is 14 - either way I am definitely down a pant size, in fact my pants have a big pooch in the belly of empty fabric - yea for success. I would still be OK if I lost 10 more lbs, but I won't complain if I can lost about 7 more.

My PFTS were down to 69 (74 at last visit, I think) and I was sooo congested and rattley I had not really noticed until I tried to do PFTS. So the gal (a different PT than usual) had me do an albuterol treatment, something I have never done at clinic (serioulsy) and I was back to 74. So I guess that is OK, but I sounded pretty bad and could barley make it to the end or take that last deep breath in.

I asked for a bone density test, cholesterol. and all my vitamin panels (my D has been low for like a year) - look at me being proactive.

I also requested to go on IVs at some point before the year is over since I have met my deductible and my insurance is paying all my bills now. I want a good clean out, especially since - though my labs two two weeks ago again showed susceptibility to cipro - we seem to be wavering on the availability of orals. So, I am guesing end of OCtober, early November we'll do them unless I get sick before that.

Anyway, that is about the gist of it. Nothing too exciting. I will take some house pics when we get settled - we're going from not quite 1000 sq feet to nealry 3000 so I am pretty excited, but busy busy busy!

if I didn't have these veins poppin' out all over my legs

Clinic today. Uneventful. PFTS hold steady at 72 (34 for 25/75). Weight is up. bah. And when I asked the dietician about losing, she laughed. Why can't people see that Cf or not, I am still a human with human worries and emotions. As of yet I still have a life that doesn't fully encompass CF or rather that is not fully encompassed by CF, so if I'm still a bit vain, I'll hold onto that because it means I am still winning. As smart as it may be to be glad I'm lugging around and extra 35lbs in case I get sick, I'm NOT glad and I don't like anticipating illness in this way: might as well hold onto it cuz I know I'm gonna need it. Yes, I'm sure this is true, at some point, but it isn't now and I want my goddman flat stomach back.

Anyway, besides that, nothing.

I've been lax, a lax blogger, lax blog reader. I'm sorry. I do love you all, especially the people who actually come here and read my drivel.

I've been writing poems lately to tell the truth. I probably won't post them, though one is being published in an online journal, so when it comes out, I'll link. It's keeping me busier and more fulfilled than writing about myself and dumb Cf right now, but I'll be back. It all cycles through.

everybody rolls with their fingers crossed

I ate a hotdog, potato chips and a half a cookie today without enzymes. Lordamighty.

It was my kid's filed day, so all the paretns had a picnic with the kids. The babe and I rode our bike there which was my measly exercize for the day. I have been suhc a slacker in that department.

My son's first baseball game tomorrow and he is a pitcher! Make momma nervous. I get more worked up than he does, I'm sure, but that's my boy out there!

My Cf clinic is actually make a change (cue the drums). They are now having peds and adult clinics on two different days. This is great news. No crowded waiting room, no snotty kids. I go next Thursday. This has been the first quarter I have not been in between 3 month visitis in quite a while. Seems a lifetime ago that I only went once a year. I don't even remember that girl.

AND, by some unknown fluke of my wierd ass insurance, it ~looks~ lilke tehy might be covering my sinus surgery 100% Why? Dunno. What loophole this falls under, dunno that eihter, but praise Jah, I think it might be true.

corn bread and ice tea's took the place of pills and 90 proof

Clinic yesterday resulted in noe much progress with regards to my aching head problem. I don't think I am too cool about my pain being dismissed.

PFTS were 70, down a tad form last time, but I can't complain.
Sats were 97, so clearly not a problem there

Doc said there was some edema in my nose, something i never heard before, but might explain some of my pain.

All he really told me to do is take more advil.

Yeah, thanks pal, cuz the advil is working like a real charm.

I think MOnday I am going to request a CAT scan - I have not had an x-ray in years so this won't be a bad idea overlall to get a chest/sinus scan.

I am going to try TOBI again though. I mentioned to the doc that I just can't keep using Cipro and levaquin over and over, I can feel it in my joints, so he thought using the zithro and TOBI might be the next logical step. I'll try it.

Meanwhile, I continue to be in a lot of pain and i have a whole new outlook on pian and pain management and how awful it is not to have yor pain taken serioulsy, which I don't think I had.

argh.

this, my friends, has given me the utmost validity in self-medicating.

did you think I come to talk am I a fool or what?

o
Well, I'm not healed, but I'm certainly no worse. My breathing ability has returned to normal but my sinuses are KILLING me. I'm not sure why, it's wierd. I wonder if it might be a bit allergy related, we've had a bit of a thaw here so maybe that stirs up the gunk? Maybe just some sort of headache from being on loads of drugs for three weeks? Who knows. Adding the zithro in seems to have made a big difference in how I feel for some reaosn though (maybe just timing?) so I am definitely going to ride this out for a while.

I go to clinic on Friday and I am demanding some answers.

I often think I need to switch to a bigger clinic. Mine seems rather inefficient and it's run by a very overworked NP. You can't really get to the doc, the waiting room is too small, and sometimes I feel like I'm the boss when I want someone else to be the boss, if that makes sense? But at the same time, I am a creature of comfort and I am comfortable with these people, I have developed a relationship with them and I'm lazy. I don't want to have to drive 2-3 hours to go to the clinic when I have one I can ride my bike to. I think, sadly, I'll have to get sicker or recieve sub par care for something serious before I really get motivated to make the change. I know that seems ridiculous, but it's the honest truth.

My fingers look incredibly clubbed these days. It doesn't seem like that should happen so quickly after an illness like i had - something acute rather than prolonged, but they are definitely clubby. I am not all that fond of my hands anyway, so ugh.

I'm back in the pool though. My energy was a bit down, but I can still do my usual 1/2 mile routine. My shoulders were really really sore though, and I can't help wonder if that isn't the levaquin at work - I was almost in tears last night because of it (plus I walked into a closet door the other night resulting in a nice bluish bruise on the side of my face which has been throbbing as well. Wah wah, poor me).

I think I need to say something positive here before the pity party comes to an end...but when all else fails, I go to the music, because, as is my motto, life is a medley. yo.

Here is the song of the day - M.I.A. "Paper Planes"
I've been a quasi-M.I.A. fan for a bit, but this song has been on my rotation for a few days. It is in the movie "Slumdog Millionaire" as well. Enjoy.

just take those old records off the shelf

Clinic today. PFTs were 74% - woot! That's the highest in years. Weight was 131.9 though - WTF. I am getting my thyroid checked first off. I was 116 in June! And I have been swimming religioulsy since September. Depressing.

Anyway, I am going to list my PFTs as I got some copies of old labs. I find them very interesting.

agePFT (FEV1)
31 74 (Dec. 2008)
31 72
30 64
30 54
30 50 (Nov. 2007)
29 57
29 61
29 64 (Nov. 2006)
28 61
28 64
27 54
27 58
26 63
26 57 (25-75 18%)
25 60
25 54 (Nov. 2002)
24 53
24 53 (Nov. 2001)
23 61
22 52
22 60 (7 months pregnant/ Sats 93 on room air)
21 54
18 75
16 96 (25-75 130%)
What concerns me here is this big drop between 16 and 21 (hello marijuana, how are you?) - but watch, it gets wierder
15 91
14 70 (what was behind the big jump up to 96???)
12 81 (big drop,again)
12 82
11 81
11 43
WTF happened here?? Was I sick? sats were 89 - I must have been sick...perhaps IVs would have been a nice touch here?
11 70
10 65
10 58

I am not sure what to think of all this. Look at all the years I spent in the 50s and not aware of it. Makes my 74% today all the sweeter.

A few interesting Doc notes I thought I'd share:

"Over time it is my goal to educate her as best as possible to take more ocntrol of her disease and look at modalities to help her. She is certainly a very bright young woman and in time she will begin to understand this better."

That was in 1996, I was 19. Took me another 10 years to figure it out.

and this from 1994 "I did suggest that she have a screening chest x-ray and chem profile, CBC and PT/PTT anually to screen for liver disease, diabetes and occult lung disease which may not be apparent clinically ot her. They'll consider this, although she's somewhat resistant and even with the minimal linitations that she has she seems to resent her disease a great deal."

doctor doctor give me the news I got a bad case of lovin' you

Apparently Albuterol is a magic elixer of sorts. I used it before I swam yesterday morning and actually pushed myself pretty hard without any extreme coughing despite the massive quantities of yellow fingerpaint I am able to ejaculate during Vest time. And Vesting seems to be the bane of my existence (which I do with HTS). I didn't use the Albuterol again yesterday since before my morning swim and during my evening Vest I thought I was going to die. I was coughing anc coughing and coughing to the point of gagging and puking and it felt like I wasn't going to get anything more up even though I could feel it rattling around in there and it HURT. So after that I used the Albuterol again and lo and behold...I felt fine. It is my expert opinion that I have a nasty case of bronchitis. But I could not get my doc nor the NP on the horn yesterday; clinic isn't again until the 14th of November and I just feel annoyed. This clinic of mine sucks. I really do like my doc as a person, but I just don't feel they are in this to be proactive, it feels more like a charity thing. I dunno.

while you're at it why don't you sign me up to sell me out

So get this. Clinic today. I went in actually preparing myself for maybe needing IVs. I've been kinda junky and tired lately. I figured maybe August's orals had done their job and it was time to bring in the big boys.

So you can imagine my surprize when I was satting 99% - last visit I was 96. And you can further imagine my surprize when my PFTS were a steady 2.08L - up from 1.94 ~2.08~ that is like the highest I have had in YEARS. And I did it three times in a row, no fluke here. Go figure.

So I did bring up the idea of Colistin, but doc felt that with PFTs at their highest that my junkiness was probably weather/allergy related and to let it lie for a minute. No argument here, I am not one to add anything into my regime that isn't necessary.

My weight was up another 10 pounds since June. TEN POUNDS PEOPLE. Doc thinks my pfts are related to the weight gain and wants me to keep it on. I still feel like a lard ass (125.9), but I can't look a gift horse in the mouth, and with PFTs up, I gotta go with it. So size 8 I am (still not happy, but I am reaching acceptance). We did change my enzymes though to hopefully help with my bloating and gas - so I am now on 4 creon 20 and 2 pancreacarb m12 with meals versus 6 creon 20. We'll see. If this baby belly goes down maybe I won't be as upset about the actually scale numbers.

I also got an rx for some anxiety issues. I felt kinda wierd asking, as I got a little paranoid he'd see my little green eyed monkey peering over my shoulder, but my issues are legit and so we're in like flynn.

Finally - there was a respirtech rep there peddling the new vest. We had a nice talk in the waiting room. I declined to try on the vest and explained to him that for me, vesting is still a pretty private experience. And no, I know for a fact my insurance is not about to buy a new vest, mine isn't even paid off yet. But later, when I was back in my exam room, I could hear him telling someone else to go to cf.com and how he had info there, etc. and I was all prepared to tell him exactly what I thought about those fools. But, he was chatting up some med students when I was leaving and I felt silly waiting my turn just to bad mouth cfuck.com. I have his card and debated emaling him. I know it won't make a difference, but I feel almost like it is my duty to educate people on why they need to promote themselves elsewhere.

That's it. Oh, and I drank a cup of coffee today and I have been talking to everyone a mile a minute, which means i could easily keep typing away here. but I won't.

Riders on the Storm

I called my clinic this morning about the labs I had drawn three weeks ago and of course they haven't seen them. The girl that answered the phone was a real dumbass too. This is why I hate the whole thing. You can't just get your doc on the phone, you have to jump through rings of fire just to leave a fricking message, and honestly, receptionists will have their own level of hell, just you wait and see. In fact, my doc isn't even in that office - it's just a satelite office that he frequents twice a month I guess when his bleeding heart strings make him take on the lungers clinic. That's mean, I gues he is a nice guy - the real problem is that it is a specialty clinic, which sees all kinds of kids (oh yes, and a few lone adults) with sad little illnesses and it is run by a NP who has to do all the work for the whole thing.

I asked if I could just email the NP instead of trying to play phone tag. I know other people in other clinics are on email with their docs, but the girl on the phone acted like I was asking about coming in for assisted sucide. EMAILOMFGNOWENEVERLETPATIENTSEMAILUSTHATWOULDBELIKETHESINOFALLSINS. stoopid bitch. I might need to switch clinics, this is too much for me.

And then, the lady from the CF chapter still hasn't called back. I think she tried once but then never responsded to my second call. Here is the thing, that is the kind of shit I cannot put up with. So I left her a salty little message as well. I know what I want to do. I definitely want to start an adult email chain to find out if other people are as frustrated with the clinic as I am. Before networking online, I never knew how other clincs were run, but now that I have some inkling, I know enough to know that mine is a disorganized germ infested maze of annoyance.

I am not an outright go-getter, I know this. I prefer to sit back and let other people run stuff - I don't care for the headaches; but I have no problem taking over when I learn that, in fact, things are being run by monkeys, and I think this may have to be the case here. That or I switch clinics and start driving 2.5 hours everytime i need to be seen. Which will it be? First, I try to man the ship. If we go down, I bail out and head for dry land.

Looks like we're going to have a killer storm here in a minute. sweet.