NAC & a near death adventure!

So here's my update. For those of you in warm parts of the world MI had been having a good ol' blizzard lately---on clinic day none the less. I was heading into a one hour trip that would surely be closer to two hours thanks to the roads. I knew it was probably a bad idea since I hate to drive anyway but I am having alot of pain in my right lung (left side body) in an area that typically causes me problems when I have inflammation going on.

I had every NAC and inflammatory study in hand and was ready for a 'fight' of scientific will LOL with my doctor. My plan being to ask for mucomyst instead of buying bioadvantix thereby saving myself $3+/day but making it clear that I WOULD be doing it either way he he he. Before I left I prayed to allow the Lord to lead my hands and sharpen my eyes because of the bad weather which I had no idea HOW bad it was when I left since right around work we hadnt been 'hit' too bad yet. Well, I almost slid off a ramp, fishtailing, on the junciton of two major HIGHWAYS thank the Lord noone else was coming which is a rarity and I had the time and skil to finally getting it back under control. This was only 15 minutes into my drive so I turned around feeling it a sign. When I got back to work I found out they had closed the road I would have been on within 5 minutes if I hadnt turned around due to multiple accidents including a semi, a bus full of kids and a bunch of cars. I was disapointed knowing I would only be able to get into clinic in February now but thankful that I decided to turn around.


I decided to leave a message saying why I wasnt coming and asking the doctor to please call me since I have a 'clinic gatekeeper' style of a nurse and I think we have a case of 'mutual dislike' ever since I told her thanks but I preffered a doctors opinion ha. Thankfully my doctor called me and I talked to him and he already has two patients taking mucomyst for YEARS orally that swear by it so my way was paved! He agreed to test my neutrophils, eosinophils, and c-reactive protein (which all play a role in measuring inflammation) before I get started and then I will test them after 3 weeks.

This was all spurred by pain in my lung that left while I was on the higher dose of steroids and has gradually come back and this week seems to be rearing its head with a vengence. We talked about the fact that I dont have a collapsed portion of lung thats already been checked, I dont have an infection, and how this pain is either my 'new normal' due to some scar tissue we know is at the periphery of that lung or there is something inflammatory going on. If its inflammatory it will either even out over time since my lungs have been through alot lately and it is my 'bad time' of year or it will get worse because it is some inflamatory process going on which usually for me means I will cough up blood.

I am also getting my magnesium level checked since I just got done with IV's and I think I have had ringing in my ears a couple times. I am interested to see if I should get a higher quality Mg supplement or if my levels are adequate on the plan I have been using post antibiotics. I am also going to an ENT with an audiologist because I need both a sinus check and hearing check so it should kill two birds with one stone.

One other thing we talked about is how zosyn works so well for me but the last time I had these crazy mad inflammatory issues was after taking zosyn. I am talking ZERO mucous for 3 weeks now and my lungs are super clear so I dont think its stuck this time like it was a couple years back. Last time this happened we did a ton of blood tests and then a bronch to make sure it wasnt a bacteria thing which it wasnt before starting steroids. Last time it worked miraculously. This time after the IV's we went to steroids based on the pain I was having and my history. One thing he metnioned was that last time I was on steroids for 3 weeks, this time for 10 days. Last time I was supposed to be on them for 2 weeks and called saying I had just finally started opening up after the 9th or so day so maybe I wasnt on them long enough. He said we could wait and see or try more steroids depending on how much pain I was in. That is when I brought up the NAC idea so we decided to wait and see with my NAC plan below in place.

NAC plan is to take 800mg mucomyst Lord help me because I only drink water and I hear the stuff is awful. Anyway. I will do this three times a day. In addition for the rest of the month I am giving up all rpocessed foods, chemicals of any kind, sugar, alcohol, caffeine, meat, and dairy. So yes I am limiting myself to vegetables/fruits/unrefined grains such as oatmeal, rice, barley/oils/spices including salt of course but nothing mixed with a chemical/nuts/seeds. Before you worry I am an overweight cf'er who has lost 10lbs the past couple months and is looking to loose 15more I have eased into this plan over the past week by giving up something each day and nursing headaches from withdrawl with tiny bits natural sugar here and there and onc excedrin this week. I will also keep working out. So between eliminating all inflammatory factors, taking the NAC, and working out I am STOKED to see what sort of results I can get. I am also adding some essential fatty acid supplements to my vitamin regimen and of course still taking all my medications and doing my therapies. The full blown 100% detox hard core starts tomorrow--pray for me or wish me luck!

One additional thing to note is that my good old 'aunt flow' is going ot be here tonight or tomorrow. In the past I have noted a worsening of lungs and higher chance of hemoptysis around this time of the month thus by exaserbathing anything pre-existing. Last night the pain in my side (after talking to the doctor OF COURSE) got much much worse. I didnt get home until 10pm because I had a ladies craft night. By the time I got home I couldnt take a deep breath and I was in ALOT of pain. Walking up the stairs to the house and then upstairs to get my husbands attention was very hard and caused alot of pain. I went straight to bed, doing breathing treatments were out of the question. When I get pain bad like this I feel it radiate down and up my entire right lung from teh central point where the pain is when it is more mild I also get this feeling like there is a string tied to the muscle that runs along top of your shoulder from your arm to your neck and whenever I breathe I feel the pain plus the 'pulling' sensation. This morning my voice is intermittent and I think I might have caught a small cold to boot which also always gives me inflammation issues even when I dont have something else going on.

So my hope is that once my aunt leaves town and this cold decides I'm not worth its time *knocks on wood* that those portions of inflammation will go down. Then hopefully by tuesday or wednesday I can get started on the NAC and I have already started the above mentioned dietary components. I am hoping and praying that will put me in a good spot a week from now!

Rocking in '10

After a rough start to my morning things are shaping up:

My first day off prednisone----hoorah

Lungs are feeling good post IV's (ended on Christmas---hoorah)

I got in a 5K on my elliptical---alright

hubby pulled some college kids out of a ditch - good karma

and.......I'm off to see Avatar with the hubby! After not being out to do anything social during IV/steroid time I'm giddy. PLUS we have a 'real' date day planned for tomorrow. What a lucky gal I am.

2010 Game Plan

Well without further ado here are my 2010 goals. I plan to do a groundhog day approach checking in on 1/1, 2/2, 3/3 etc......hopefully I will do a bit better than last year at checking in as I was only at about 50%.

General Goals

Co-found group at church for people dealing with or supporting someone with a chronic illness

become debt free

better job of my wife/mom/work balancing act

read ~ a book a month

make it through the old testament & incorporate morning devotional time

go on a VACATION

do a random act of kindness at least once a month (I might blog about some of these so feel free to join me)

plan a date night with hubby once a month (sorry LOL these are top secret)

almost forgot...get BACK on the Great Strides walk bandwagon (had to miss due to surgery last year and shamefully did not do a letter writing campaign)

Health Goals

make a PPHR (portable personal health record)

get in better shape

have a respirtech rep come out and check how my vest is fitting and help me make another custom program

loose 20 lbs (I know I know but for me it will help with diabetes risk and lung function)

maintain my lung function

consult with ENT, it has been about 8 years and I have more sinus issues now

revisit dermatologist

more regular sinus rinses

start using NAC

do some research on prednisone usage

do a better job at staying 'up' on research

look up info on supplements

2009 the good, the bad, and the ugly

So it's almost time to say goodbye to another year, I would say 'long year' but in actuality it has flown by. Usually I am pretty much ready to say goodbye to the year but despite some trying times I am just happy to reflect and get ready for another year. Maybe its my overall attempt at changing my spirit or having a softer outlook or maybe it's just being more grateful for what I have. Not to say that the year has all been a 'bed of roses' and lately it's been a bit prickly but.....that is life right? As my grandmother says "this too shall pass".

So let's get on with it then shall we.........

There was the GOOD

my salvation.....being baptized in conjunction with my grandmother has to go on the top list of all time

finding an interactive and uplifting church home that welcomes everyone as they are

working on my marriage and reaping the benefits

moving significantly closer to being debt free

meeting new friends at work and church

improving my lung functions

The BAD

a horrid allergy year including 3 allergic reactions resulting in steroids & serious 'not fun' times

a new lung bug (who's relevance is yet a mystery) that I'm totally not jiving

having a cold/flu/lung infection for pretty much the past 3 months with few breaks in between

fertility treatments back to back and the oh so not enjoyable side effects

and the UGLY

Loosing Grandpa Keith, Grandma H, and watching so many loose their battle waiting for lungs

Loosing our baby early on after trying so hard to have 'him'

2009 Year In Review

Overall I am very pleased with myself, this is probably the best I have ever done. For me not just having 'a' resolution but a plan for the direction I want and goals are better. Checking in regularly helped too via my 'groundhog resolution' plan of checking in each month on 1/1, 2/2 etc

2009 Overall Goals:
Maintain my lungs - Improved actually *clapping*
get in better shape - so so, some parts yes, some parts no
Loose 20ish lbs - nope, not even close, thank you fertility treatments, prednisone, and laziness
Read more - I completed 16 non-fiction books
Be a better wife - Have definately come a long way
Find a church - Joined, baptized & fully involved
Read at least some of my new bible - Read New testament & portions of Old


2009 Health Specific Goals:
Up my workout routine to 5 days - not there yet

Start jogging again (with my Knees permission) - tons of problems they declined permission

Be evaluated for Tiger-2 - done (decided it was a no-go)

HTS routine - done

More huffing throughout the day - done

Start doing a BS monitoring 2x month - pretty good

FLUSH MY PORT ON SCHEDULE - better but needing improvement

More efficient & compliant way to wash/sanitize my nebs - done

Determine peak flow range - done (need to redo)

buy masks for cleaning, dusting, etc - done (need to use them ALL the time though)

buy allergen bedding and pillows - done (need new covers dont like the old ones)

start eliminating alot scented products - done (well with what is reasonable)

Bosu Training

I wanted to tell everyone about my newest mucous relief workout. I have previously went to a gym and there was a bosu class that I loved but due to scheduling could only take about once per month. It always seemed on those days I got great clearance. I had a hunch it had to do with the type of workout it was but wasnt sure. Now we have decided to make a small home gym so its more convenient for us both to work out and I can avoid the germy gym and feel free to cough. I decided to invest in a bosu for toning since we couldn't afford nor had the room for a big bowflex or something.

I have confirmed my theory that it is the type of workout and not just a given day so I wanted to let everyone know about it. First let me say this is not a little pansy work out you can do hard core strength training on here, with the aid of some resistance bands, hand weights, and perhaps a small weighted soft ball you can do a TON. These classes @ the gym are considered very hard and when a guy comes in expecting to 'have fun' they leave crying (which is hilarious). Anyway the instability of the surface leads to core training no matter what you are doing. Then during the workout you are breathing hard and laying on your stomach, back, sides, walking up and down, bouncing, you name it on the ball. With all the different positions during the hard breathing it seems to really help dislodge mucous for me.

What's nice is you can do this at your own pace at any level and the book they send shows the excercises using the bar (easier) or not, there are all sorts things you can do to varying levels of intensity. There is also another set of 3 videos you can buy which I will eventually get too.

If anyone decides to try one out let me know what you think. Oh and it fits easily into a side area of a room and you just need to be able to step one step to the side and back to work out.

The bosu below is the dome, its basically 1/2 of a really strong ball mounted to a heavy non-skid platform. I bought the one that comes with a docking station below for $80 from and ebay store that sells refurbished ones (regularly $150) and so far so good.

The trainer helps because having the bar there you can do some additional excercises you cant otherwise do and you have the clips at the base thats hard to see here where you can attach resistance bands. It also comes with a workout video and brochure to show you how to do all the excercises.

Here is a short video just showing a couple things.

http://www.youtube.com/watch?v=M8mcHyfFvQI&feature=related

Sicko Routine

I try not to waste a bad experience (getting sick) and not gain some good insight from it. Whether its examining my routine, addressing my own laziness/compliance gaps, or investigating a new item. This time I have looked more heavily into NAC and a humidifer......subjects to be broached with the hubby since the humidifier will run about $200 and the NAC almost $3/day.

I am going aggressive with my schedule to try and make sure I get my lungs cleaned out effectively. I saw FEV1 of 108% earlier this year and I sure would like to see that again come spring.

The biggest part of my routine is committing to working out at least 15 minutes each day, part of that is tricking myself because I know once I do 15 I will do more because I'll start feeling better. Today I KICKED BUTT and did 55 minutes---I also took a 2 hour nap but who's counting!

6am Zosyn
6am xopenex hypertonic saline vest
9am zofran
10am xopenex pulmozyme vest
2pm Zosyn
2pm xopenex hypertonic vest
5pm tobramycin
8pm xopenex hypertonic vest
9pm zofran
10pm zosyn