Sunday, January 31, 2010

Microlife Peak Flow Meter

I was looking around at the pico and the microlife spirometer as I am considering getting one. I found this bundle kit that included the software so that I can download it to my computer. I would like to be able to see trends over time and insert notes for when I am sick etc. I have in the past used an excel sheet for my clinic FEV's and I thought this might be even handier. I am interested in trackings maller changes and seeing if I can correlate them to things in my life instead of just when I am sick. I am on the fence right now, still doing some research.

Measures peak flow and FEV1 to indicate early warning signs for impending asthmatic incidents or conditions

Automatically stores 240 readings, Automatic traffic light indicator

Doctor recommended, Meets American Thoracic Society (ATS) accuracy standards

Software Included: User-friendly and Customizable Settings, Easily chart progress and print graphs

Make personal notes of activities

Saturday, January 30, 2010

Hmmm Headhunting Cyber style?

Not sure what to think. I have had two CF websites approach me recently asking me to be involved in their site in a larger way and/or to link my blog up with their site. I do not fully agree with either site so I have a conflict there. However, being able to do something useful for other CF'ers is appealing to me. I did make it a goal to read, blog, and be more involved in health research stuff so I guess I have alot to think about. There are, of course, Pro's and Con's to each.

Opinions welcome

Oh and I STILL need to redo this blog with tags and such, if anyone knows how to get my tags to show up as a way to view posts please let me know.

One other think is how do you make those mini links to show up here?

Oh and is there an easy way to post articles here, I have some I want to post and dont know how to go about it.


Consult with Dr. Moss

I will be flying to sunny California the second week of March to have a consult with none other than Dr. Moss! I am super duper excited. They are going to work on getting my appointment set up and checking with my insurance next week but I dont anticipate any problems. Now I am off to read up on everything related to his research and anything else inflammatory related I can get my hands on!

Also cool is since I am flying literally across the country hubby says I might as well stay a couple days and enjoy the sights. I have never been away from Lillian before so that will be hard but I am sure I can find something to occupy my time.

I'll keep updating as things reveal themselves and if you have anythign for me to read let me know!

Thursday, January 28, 2010

Plugging Along

Last night I was going to write a brief blog commenting about getting up some more 'plug like' material. I wouldnt consider them a full plug but since I am almost completely non-productive right now and what I do get up is light yellow (yeah) and thin (double yeah) this is definately some older stuff I have dislodged and is somewhat 'pellet-like'. So hopefully the steroids, aspirin at night, ibuprofen during the day, anti-inflammatory diet, and NAC throughout the day are all helping.

Not too much to my surprise I got a call today saying that the doctor believes my X-ray from the ER this past weekend is showing plugging whcih is what would cause the pain I was having. So most likely the inflammation started, I chose to hold off on steroids, the inflammation continued holding in the mucous, then where that mucous was drying out and hanging out I started to get more and more pain and inflammation. That would make sense because the pain started in a localized area, I felt liek something was stuck after being 'beat' I could huff and dislodge some but not what it felt I needed too, then I got the intense pain. By the next day that pain went away (painkiller was needed at night) then the pain continued over the course of a week and spread out and was no longer isolated to one location. A week later to the day is when I went to the ER for a chest X-ray to make sure nothing was seriously going on since the pain got so much worse so fast and was accompanied by chest tightness (happens when I have something 'stuck' or right before a bleed).

Anyway thats my story and hopefully I will be chugging along soon instead of plugging along. I have been doing everythign right except for the excercise. The past two weeks I havent done alot from not feeling well. When on steroids I am up late, tired in the morning, cant get up early to excercise and repeat. I got a RX for ambien CR today so hopefully I can sleep and get up on time. I made a deal with hubby to kick me out of bed no matter what when my alarm goes off. An extra hour of sleep isnt worth keeping those plugs in for!

Wednesday, January 27, 2010


One of my goals for the new year was to do a random act of kindness per month. I said some would be small, some may be big, some I would share and some I would not. I feel that you dilute the full benefits of your RAOK by 'telling' about it if you are doing it in a way to show off which I am not and is why I am not going to tell everythign all the time. I do think it is so fun to help others and hope that by blogging about it others may want to join me in doing some RAOK and starting a ripple effect.

I will always try to post one that doesnt cost money because usually those are the best ones. Maybe I will do one of each per month.


Tonight I did a really fun RAOK. It was our first night of a growth group for church called Looking Up that another lady and I started it is for people dealing with chronic illnesses or supporting others who are. It was a small group and one guy came in looking to be in so much pain and he was talking softly and said he apologized but at the next group he would be a 180degree different and more up to talking. He said he had been without his neurontin for his epilepsy and his lyrica for his fibromyalgia for almost two days and would be out until saturday because of some insurance snafu's. They have no money at all, living with friends, disabled, older, etc. After the group I offered to drive to the pharmacy with him and buy him two days worth of medication. So I am going to rest easy tonight knowing that he wont have a seizure and can hopefully get a bit of sleep.


I paid for the couple behind me's sandwich and soup at subway......they were so cute how could I not? 

I saw my neighbors garage door was up and went to put it down for her and check on her since all her lights were on and found her (100 years old) wrestling with her back door. She could not get it open because of the weather it was sort of 'stuck' and her son was coming in to town at midnight, her plan if she couldnt get the door open was to stay up waiting for him. She was so worried she would be a mess the next day or fall asleep and have him locked out. I was so happy I decided to go over there.

Prednisone Documentary

never finished this post, will publish as is for now....since i'm on steroids AGAIN

Prednisone oh prednisone....where do I begin? Well you'll have to excuse my rambling because mine is coursing through my bloodstream at this very moment as well! I have also been thinking about prednisone, my use of it, and its affects alot so I greatly appreciate this post!Sandy-guess what I am doing this week besides staying away from people? ORGANIZING. Super crazy organizing, I have a project a day and I have even been blogging it because one of my friends wants me to organize her house LOL. I never put 2&2 together until I read what you wrote .My negative side effects:Well I pretty much get extremely wound up, over-react, get tense, and in a summary PMSx100. I have a very hard time sleeping, and by the 2nd day I am starving. My positive side effects:I LOVE LOVE LOVE the effect it has on my neck and back, I have alot problems with my neck, I am a very tense person and also hyper-mobile so my chiropractor has a hard time working on my neck. I regularly get massages and adjustments but I never feel as good as when I am on steroids. I once went to get an adjusment while on steroids hoping it would be easier to get things in line. She was in awe and kept commenting on how 'easy' it was and there wasnt even much she needed to do. Finally she looked at me and said "its like you have a new body, WHAT did you do" and I told her. Having been on steroids herself for MS she said AHA! Anyway that is the ONLY thing positive but it is something I like. My regiment: I have a plan set up with my PCP that whenever I am on steroids I call her and she prescribes xanax for me, otherwise I am just way way too wound up and make everyone aroune me miserable. It makes it better. Recently I started taking lexapro as a short term situation so I called my PCP and asked to double my dose. Using 20mg lexapro and then I have been taking 2-3 xanax a day actually make me feel semi alright. I am home with my daughter this week and am able to enjoy myself and I am not a complete over-reactive loon. I think this will be my new gig and will keep lexapro on hand for when I take prednisone. Additionally, next time I see my PCP I will ask for a RX for a sleep-aid that will work short term because the advil PM probably really isnt a good idea and I have been needing two every night in conjunction with sleepy time herbal tea to get to sleep. As for my usage/experience I dont know if it is unique since i have been using prednisone frequently despite having PFT's around 100%. 2 years ago after being on 5 weeks (2 separate almost back to back courses) I kept feeling inflammed and like something was 'stuck' and my PFT's were varying by 20% and I would feel something 'moving'. I was also having intermittent pleural pain. That doctor waid my PFT's were "too good" to need steroids. I dont care how good they are if they are varying by 20% given my other symptoms something else was going on. I have a new clinic and now my new regiment is sometimes antibiotics, sometimes steroids, sometimes both depending on what is going on. Right now I just finished a two week course of IV's which worked wonderfully for the infection. However, just like the last time I took zosyn I felt inflammed afterward which again resulted in the pleural pain on one side (which is not my norm). So now I am in 20mg range of the following burst: 60mgx2, 40mgx4, 20mgx4. My doctor does not feel being on steroids like this a couple times a year is going to be damaging to me. I am however looking into taking NAC because I want to look at other ways to reduce inflammation pro-actively.

Tuesday, January 26, 2010

NAC Mucomyst Acetylcysteine

Well whatever you want to call it I started taking it friday night, January 22nd. Unfortunately I wont be able to truly tell the difference because I ended up in the ER with my inflammation being so bad on saturday. It was too little too late. I had been trying to avoid steroids and see what the inflammation would do on its own. I also eliminated all inflammatory foods from my diet and planne to do the NAC but my body wasnt patient enough. We did chest x-ray to make sure nothing seriously problematic was going on and then I started 60m steroids. I can say that on sunday I got up a small little plug....I wouldnt exactly call it a plug but considering I have been getting no mucous up and it was dark green and thick mucous it was almost there.

My doctor RX 600mg 3x/day on the phone I said I really wanted at least 800mg and he said ok but it didnt come thorugh that way.....of course the nurse forgot for 3 days so I dont imagine he even remembered that convo so I will talk to him next time. I have  been doing 1000mg 2x/day because of transporting it to work seeming like not a good idea with the stink factor and the spill factor and needing ot be refrigerated. Once I get a higher dose rx maybe I will.

I also have to get used to the taste. It is horrible, really really horrible. I dont do juice or pop but I tried taking frozen juice concentrate making it really strong and drinking it after and it didnt help. The one thing I found that worked was taking a shot of NAC followed by a shot of vinegar/water mixed which did fix it and alot times following up with a clemenetine or some other food. This however is too much acid for me because my belly is not pleased. I definately dont want to be gagging at work in canteen until I figure out how to tolerate this stuff!

Is fizzy nac this nasty? I thought about buying that for convenience and taking it to work.

Saturday, January 23, 2010

GSK Study #2110399 in 2010 (Study Drug: SB-656933)

With all my recent problems this sounded right up my alley. I contacted them immediately. Since once again chest x-ray looks great, lungs are perfectly clear, no sputum production but this intense pleural pain won't leave.

The pain traveled from its isolated location in my right lung last weekend to the whole lung after the acute flair I had. It has maintained a lower level pain in the whole lung with more pain in my 'bad spot'. Yesterday I felt some pains in my left lung and today was a bad day and it consumed the entirety of both lungs making it painful but not debilitating. I stopped off to the ER for a wet read chest x-ray which confirmed there was nothing 'exceptional' a couple nodular changes around my bad spot may prove interesting but most likely stuck mucous from not being able to cough well.

Study drug info

Study Drug, SB-656933, is a selective CXCR2 antagonist in development as a novel, once-daily oral anti-inflammatory agent for the maintenance treatment of Cystic Fibrosis (CF) and Chronic Obstructive Pulmonary Disease (COPD). We want to find out if this experimental drug will help decrease inflammation and slow the progression of lung disease. This study compares how well different doses of the experimental study drug (SB-656933) control inflammation in patients with CF. Two doses of the study drug will be assessed against placebo to see which dose works best.

I sent them the below email tonight. I hope they contact me. I am also considering leaving my center that I have only been at a year. The doctors are both great but the center is set up terribly as far as servicing a patient goes. I woudl have to travel even further so I may consider south of my house in Indiana.

I live in Michigan but would consider travel in order to participate in this study. I am a 30 year old female, diagnosed at 21 years of age, mutations P67L and E60X, borderline sweat test, pancreatic sufficient. Last FEV1 100% and FEV25-75 99% and I culture pseudomonas aeruginosa, achromobacter xylosoxidans, and recently suspected ralstonia paucula.

That being said my problems seem to revolve around inflammation more than infection. I finished a round of IV’s on Christmas day, the first in almost two years and it was after having H1N1. The past two times I have taken zosyn for IV’s I have gotten a horrible inflammatory response afterward. I am currently on a second round of steroids for a more extended period of time, probably 3 weeks since the 10 days I just completed did not work. I started xolair injections almost three years ago and have not had problems since although an IGE level is not possible right now, at least in the US. I also generally get inflammation and/or small amounts of hemoptysis as a flare as opposed to an exacerbation. Two years ago I went to a new physician who did extensive work to confirm my inflammation theories and we have since treated me with steroids when I feel it getting exacerbated and my FEV1 has improved markedly. The above mentioned FEV1 was when I was ill, the one before that was an FEV1 of 108%. Despite my good FEV1’s I had to start steroids today because of intense pleural pain that has lasted a long time.

I have currently eliminated all processed foods, meats, and dairy from my diet in addition to adding flax seed oil, fish oil, and 600mg acetylcysteine orally 3 times per day (my doctor would not write for the 1000mg Dr. Moss used). I have been diagnosed with ABPA years ago with an IGE of 1200 after steroid therapy got it down to the 500 range I tapered, for about 3 years after that it remained in the 3-400 range.

I realize the steroid is an exclusionary marker however I would meet the criteria after being off of it I believe. I am very interested in hearing from you. If I came to Stanford I would want to do a CF consult with Dr. Moss. I realize the travel costs would be my own.

Sunday, January 10, 2010

Day 1

I am hoping that this dietary experiment will yield some insight into my inflammation keys. If it doesnt than at worst I tried something, eliminated it and moved on. I think in general we eat way too much junk and even alot of the 'healty' foods have so much STUFF added to them.

I am going to be doing some research on elimination diets so that I can look into what order and how to add things back in and see the effect, if any, that they have. I will see which portions I can keep for good and which things I want to add back, others like sweets, I hope to find I can add back in moderation ;-)

Today is full blown day 1:

only water and lots of it

NO: sugar, caffeine, alcohol, chemicals/preservatives, meat, dairy,

Big On: fruits, veggies, grains in their natural state, nuts/seeds, oils, pure spices, beans/legumes, and salt of course

I have made exceptions for CaCl calcium chloride which is basically salt and citric acid i.e. fruit family.

The only other exception I made is in the sake of love and that is for my daughter, its my 30th birthday on the 20th and she is already talking about what kind of cake she is getting me so I may have a very small piece of cake that day because I dont want her getting a 'diet' mentaily and she wont understand at 3 years old what I am doing.

Saturday, January 9, 2010

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!

Friday, January 1, 2010

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.