Monday, December 29, 2008
Reading back on these I realized how valuable I find it to track my health via a blog. At one point I had an excel sheet with all my PFT's in it, that file was lost a long time ago but I might start another one for tracking purposes. If I get in to tiger-2 then I will have alot numbers to manage!
After all that work I dont have much to say (rarity) but stay tuned.........
I am wokring on a year end review and a 2009 FYI plan similar to my 2007 work.
Journal of Medical Genetics, 1998, Vol 35, 122-125 --------------------------------------------------------------------
a cystic fibrosis allele with mild effects found at high frequency in the Scottish population A Gilfillan, JP Warner, JM Kirk, T Marshall, A Greening, LP Ho, T Hargreave, B Stack, D McIntyre, R Davidson, JC Dean, W Middleton and DJ Brock Human Genetics Unit, University of Edinburgh, Western General Hospital, UK. Only three mutant cystic fibrosis (CF) alleles have to date been established as conferring a dominant mild effect on affected subjects who are compound heterozygotes. We now add a fourth, P67L, which occurs on about 1.4% of Scottish CF chromosomes. Among 13 patients (12 unrelated) with this allele, the average age at diagnosis was 22.5 +/- 11.3 years. None of the cases had consistently raised sweat chloride concentrations, the average value being 57 +/- 9 mmol/l; 77% of the patients were pancreatic sufficient. When compared to three other established mild CF alleles, R117H, A455E, and 3849 + 10kb C-T, a compound heterozygote for P67L has minimal disease and clinical suspicions are unlikely to be confirmed other than by DNA typing.
Here is the abstract that will be presented at the big Anaheim conference this year about our website/forum. I am so excited abotu this and hope it will result in more people joining our forum. It is estimated based on it rarity that there are only 200 individuals worldwide (of course I believe that is due to alot of us 'CF oldtimers' not beign diagnosed yet).
TITLE: WWW.P67L.COM: PATIENT DRIVEN COMMUNITIES IN RARE CYSTIC FIBROSIS MUTATIONS ABSTRACT BODY: BACKGROUND: Continued developed in the detection of CF mutations combined with a rollout of newborn screening is leading to the detection of groups of patients who form a very small subset of the total number of CF cases. If a CF clinic has one of these patients they will generally have no baseline for comparison and in general published series are small. A group of patients with one of these rare mutations, P67L (0.2% incidence worldwide of CF patients), has self formed into a community which can share information about diagnosis, treatment and prognosis. The aim of the community is to allow these patients to share information in such a way that could potentially benefit themselves and their treating physicians through the sharing of knowledge that may be specific to their mutation. P67L is a mutation found in CF across the world, but more frequently found in patients with Scottish ancestry. METHODS: The internet provides the perfect medium for connecting a disparate group such as individuals with a rare mutation. In April of 2007 one parent created a website called www.p67L.com and using shareware was able to create a forum style website very quickly and at little cost. Word was spread by posting on several health related bulleten boards looking for other people with P67L and also the metatags on the website were adjusted to increase it's positioning in a google search.The forum was set up as a closed website meaning that it is password protected so that search engines cannot get 'inside'. Access to the forum has to be requested through the administrator who vets out applicants first to ensure they have a valid reason for wanting into the forum. RESULTS: Within three weeks of being created the forum had 7 patients or caregivers in active discussion ranging from ages 18 months up to 39 years and located in US, Canada, UK and Ireland. Although prognostic conclusions are difficult draw from relatively small patient numbers, there are some interesting information from those already in the group: Pancreatitis seems to have occured in a three patients, but only in their teens and two patients have had their gallbladder removed. DISCUSSION: The P67L.com community is already providing support to parents and patients with this rare mutation. It is hoped that the internet system will enable patients to better understand the symptoms they may experience. We would warmly welcome clinicians inviting their patients with P67L to join the community of patients and parents at P67L.com
Wow Wow Wow
I cannot convey how excited I am. In a nutshell I have had two poeple on this forum look me up as we share the same very rare P67L mutation. The second was a girls father, she had just been diagnosed. After speaking with me it gave him the idea that it woudl be nice if otehrs with this mutation could all chat because so far the 3 of us with teh mutation had so much in common and our cases are considered 'atypical'. He felt my experience thus far gave him a guide to look at when considering how his daughter might do.
To date there are just a couple tidbits published about P67L saying that it in 1998 it was confirmed to be the 4th mutation inferring a dominant mild affecft and the average age at dx was 22.5+/-11 years. That it occurs in 1.4% of scottish CF chromosomes, most patients are pancreatic sufficient and have sweat concentrations in the 57+/-9 range. Well the guy I have been talking about established a website www.P67L.com which we in just one month have gotten together 6 people with the mtuation and have a lead on a good few more. Now we have interest from a top UK doctor who will be presenting an abstract at the anaheim CF conference and perhaps later doign a study on us all.
The ambry website is: http://www.ambrygen.com/ The toll free number is 1-866-262-7943 (they are very helpful) You can download an 'insurance pre-verification request form'. Fill out your portion and fax back to them. They will contact your insurance to find out if it is covered and call/fax you back with the information, generally within 4 hours.
The ambry CF Amplified panel is, to my knowledge, the only one able to test for every mutation, do not settle for the others because if your child is 'borderline' they may have a rarer mutation that the basic panel will not pick up. The cost of the CF Amplified for insurance is $3,100 however, if they were to deny your claim you can work out a payment plan with Ambry for $1,300 total cost.
In addition I just recently found out (this was confirmed by Steve from Ambry genetics) that they can do a check for any specific mutation for $125. This would really only be useful in the event of siblings where one was previously diagnosed, since assuming they have the same parents you would know the two possibilities.
Additional Loophole: Your plan may say it is denied due to being out of network. I found a loophole to this for my insurance. As long as I had it drawn at an in network hospital that couldn't run the test (of course no one else can run it) and they had to send it out then it would be covered. The trick is you have to have proof that it was drawn in network and sent out of network because that is the only option and most hospitals if doing a draw for something they cant run will just do a 'courtesy draw' meaning they don't bill you. I had to find a hospital willing to bill for the draw and tell them I would gladly pay for the draw should it be denied (since it is not something normally billed to insurance) the cost was only $17. My regular large hospital was not willing to bill for a draw they said they could not since it is always a 'courtesy' so I called smaller hospitals until I found one willing to work with me.
Many pediatricians are just ignorant when it comes to borderline sweat tests. Anything in the borderline area should be followed by a genetic test (in my opinion and most doctors are starting to realize this slowly but surely). Under 40 is considered negative, 40-60 is borderline, and over 60 is positive for CF. I have had 6 test results over the course of my life before being diagnosed ranging from 36-56. If it were my child I would insist on a genetic test. Many times since they don't full understand the potential for 'borderline' individuals to have CF or for older or adult diagnosis they will tell you it is unnecessary. The pediatrician that I forced into ordering my daughter's test later when questioned by the insurance folded and said it was not needed because she 'wasn't showing signs' of the disease, I did not show signs for a long time so I had to educate her. This same thing happened with my sibling's doctor who proceeded to inform my mother there was no such thing as adult diagnosis.
I do not have the information for the temperature and duration of time that is needed to kill of most bacteria, especially those in question like B.Cepacia, MRSA, Pseudomonas. I Believe I have it soemwhere but if someone could post that it would be helpful, otherwise I can look it up perhaps later.
Wet Dry T1 T2 T1 T2
60 sec 139.9 145.0 115.2 122.8
5 min 166.7 174.5 164.5 172.5
10 min 170.3 178.1 171.3 179.5
15 min 172.0 180.1 171.8 179.9
20 min** 172.8 181.3 172.6 180.6
25 min 127.0 129.5 136.6 139.5
30 min 99.3 99.9 100.0 100.1
Notes: All readings were performed using a calibrated temperature mapping thermometer, accurate within +/- 0.1 deg, it has wire temperature probes so that I could fit them in through the holes in the top and adjust them to their desired locations. All readings were performed with the germ guardian loading basket containing the parts for three sprint neb cups. (since this is a pretty full load it simulates worst case compared to jsut throwing one cup in there--although I can jam 4 in there if I try) All readings are denoted in degrees Fahrenheit.
**You will notice the large drop in temperature between 20-25 minutes. On the second dry cycle I noted at what point this happened and it was at precisely 22minutes30seconds. Wet-denotes nebs put in after only shaking off excess water
Note: done as a comparison for worst case scenario, I know I many times throw them in there still damp. Dry-denotes the nebs were completely dry, this was the second run I did but I waited for the guardian and cups to return to room temperature.
Note: guardian is only intended to be used with dry items.
T1-This temperature probe was placed at the outer edge of the very bottom level. Meaning the lowest your nebs would be sitting at. It was not touching the grate below (metal) where heat source is, only as low as a neb would actually be (the bottom of the blue plastic) and towards the outer edge of the vessel since this temperature could be lower than a temperature monitored in the direct center of the loading basket.
T2-this probe was placed just inside the top of the loading basket (2.5cm) down and towards the center of one of the slits where air escapes.
About 2 months ago I started running 3 days a week and I have been feeling really well lung wise and think its much to the runnings credit. I get out hard things that are like little green pieces string that I can tell have been stuck somewhere for goodness knows how long. Anyway long story short with my peak flow down 50pts from where I have been blowing I got the following PFT report today (yeah *does a happy dance*). I couldn't be more thrilled all my numbers were way up from my most recent appt in december AND up from Jun 2007 (see below) which was when#1 I broke my personal best AND I got off IV's!!!! Yeah. I have NEVER EVER EVER been able to duplicate post IV PFT numbers, ever!
The other really great part was even though my 'best' blow was the one below and the one they recorded I did blow another one that showed my small airways 25-75% at 104.7% of predicted so I am not counting that but I see there is still possibility to improve and get it there for real! This is 8 months out (post IV's) and did I mention february is my worst month? Part of the reason this cold scared me so badly is that I ALWAYS get sick in feb, last year was the first one since dx I did not land in the hospital with hemoptysis. S
o even though my knee is giving me alot of trouble lately and I was doubting if I should push forward with tryign for a 10K I figure to heck with my knee, I will take my lungs over the knee any day! I had decided that before but seeing these sorts of results really reinforces that decision. I told my nurse I really would like to see what my numbers are healthy because if my peak flow is down that much I must be higher than this reading today.
21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
25Jun2007: FVC 105 FEV1 97 FEV25-75% 82
4Dec2007: FVC 99 FEV1 91 FEV25-75% 77
so yes, sorry if you made it to the end of this, it is all about me, I am journaling this to keep track of my PFT's for future reference. ta ta and rememebr you dont have to run, its whatever is challenging to YOU!
I have read some info here and there about heart rate training and done some basics, mainly just doing intervals of eliptical, jogging, stairs etc at different intensities but I have not been following a formal plan. It seems there is so much info out there since this is getting popular for all of us 'regular joe's' out there and not jsut world class athletes. I found a woman who has good credentials and targets her advice to everyone from the elderly to those just trying to be able to get up a few flights of stairs to world class athletes. I like her advice so far and think I am going to try it out. I have linked to her website but also copied some info here for further reference. http://www.sarkproducts.com/sally1.htm
Here are her credentials: SALLY EDWARDS BIOGRAPHY Sally Edwards is passionate about exercise and she practices what she preaches. She's a ranked "ultra" athlete who's finished fourteen Ironman triathlons and numerous other "extreme" races. In 1994, she set the woman's record for the Iditashoe, a 100 mile snowshoe event in Alaska. In 1995 and again in 1996 she participated in the 370-mile Eco Challenge adventure race. This past August her women's team finished first in the 3,200 mile cross country bicycle race, Race Across America in 7 days and 22 hours. To celebrate her 50th birthday the next month she captained a four-person team racing in China in seven sports including kayaking, off-road inline skating, mountain climbing and more. In October, she finished her fourteenth Ironman Triathlon in Hawaii which includes a 2.4 mile swim, 112 miles by bike, then a full 26.2 mile marathon. Edwards holds a graduate degree in exercise physiology from Berkeley and a master's degree in business. She has authored eleven books and is noted for her inspirational public speaking and support of charitable concerns , especially The Susan G. Komen Breast Cancer Foundation. A Sacramento, California resident, she served in Viet Nam with the Red Cross. Train For Change: Her Book & Theory Synopsis: You may think that training is just for athletes. I absolutely believe that with few exceptions everyone can train to create change which leads to a good health life. Exercise is as different for everyone as change is different. Whether you want to change by shedding a few pounds or you just want to feel good about yourself, then here's a way that, if you follow it, you may end up on the wellness road to a new life.
What's I'm talking about is Heart Zone Training, the best approach to all-around fitness I've found. This isn't a one-size-fits-all concept. It works for a 50-year-old athlete like me, a 60-year old with a family history of heart problems, a 70-year old wanting to improve strength, or an 80-year old who wants to climb to the third floor of a building without puffing. It works for a 20-year-old who wants to get fitter, a 30-year-old who has become more sedentary from too much time in front of a computer, and a 40-year-old who is preparing for a second wedding ceremony and wants to be their best.
Let's take it one part at a time and first look at those three words: Heart Zone Training.
HEART That's easy. Your heart's a muscle; you can strengthen it. It's a use-it-or-lose-it muscle so if you don't do cardiovascular exercise, you'll lose the hearts functional ability.
Determining Max HR:
Mathmatical Option (not as accurate)210 minus 1/2 your age minus 1% of your body weight + 4 (males) One Mile Walk Test Find a track, perhaps at a local school, and walk four continuous, evenly paced laps as fast as you can in your current condition. The first three laps put you on a heart-rate plateau where you hold steady for the fourth lap. Determine your average heart rate for this final lap. Then to predict your Max HR, add 40 bpm if you are in poor shape; for fair shape, add 50; and for good shape, add 60.
The Step TestUse an eight-inch step. Warm up appropriately. Then, use this four count step sequence: right foot up, left up, right down, left down. Counting "up, up, down, down" as one set and keep a steady pace of 20 sets per minute. Measure your average heart rate during the third minute, then predict your Max HR by adding 55 bpm if you are in poor shape, 65 for fair shape and 75 for good shape. That number is your predicted maximum heart rate. Heart Rate Zones: Zone Number Percentage Range Heart Zone Range 5 90%-100% - bpm 4 80%-90% - bpm 3 70%-80% - bpm 2 60%-70% - bpm 1 50%-60% - bpm Description Zones & Benefits: Zone 1
THE HEALTHY HEART ZONE: 50%-60% of your individual Max HR This is the safest, most comfortable zone, reached by walking briskly. Here you strengthen your heart and improve muscle mass while you reduce body fat, cholesterol, blood pressure, and your risk for degenerative disease. You get healthier in this zone, but not more fit -- that is, it won't increase your endurance or strength but it will increase your health. If you're out of shape, have heart problems, or simply want to safeguard your heart without working too hard, spend most of your training time here. It's also the zone for warming up and cooling down before and after more vigorous zones. Zone 2
THE TEMPERATE ZONE: 60% to 70% of your individual Max HR. starts training your body to increase the rate of fat release from the cells to the muscles for fuel. Zone 3
THE AEROBIC ZONE: 70%-80% or your individual Max HR The number and size of your blood vessels actually increase, you step up your lung capacity and respiratory rate, and your heart increases in size and strength so you can exercise longer before becoming fatigued. Zone 4
THE ANAEROBIC THRESHOLD ZONE: 80%-90% of your individual Max HR Here you get faster and fitter, increasing your heart rate as you cross from aerobic to anaerobic training. At this point, your heart cannot pump enough blood and oxygen to supply the exercising muscles fully so they respond by continuing to contract anaerobically. This is where you "feel the burn." You can stay in this zone for a limited amount of time, usually not more than an hour. That's because the muscle just cannot sustain working anaerobically (this means without sufficient oxygen) without fatiguing. The working muscles protect themselves from overwork by not being able to maintain the intensity level. Zone 5
THE REDLINE ZONE: 90% to 100% of your individual Max HR. exertion done only in short to intermediate length bursts. Even world-class athletes can stay n this zone for only a few minutes at a time. It's not a zone most people will select for exercise since working out here hurts and there is an increased potential for injury. More to follow later
After the first shot I was pretty sure that I was already noticing a difference, now after the 2nd I am positive!
There have been two very rainy days here which for me would always = severe migraine sinus headahce and wheezie tight chest. NOW I had NOTHING no effects, I could not even tell it was raining. Honestly this alone is miraculous and enough to keep me taking the shots.
Additionally, I dont know how to describe it but here is my best shot. You know when you take a hot steamy shower and blow your nose and it feels clear then you step into a not steamy room and take a big breath cool air and you feel clear and cool air in nose lungs? That is how it feels lately for me. I dont really know how else to describe it. I have gotten a few more green 'flecks' or hard pieces in my spit out which seems good.
BUT I have not been really congested and I wonder if that is a coincidence. I ddint think the XOLAIR would affect my level of congestion but I suppose if your lungs are more inflamed due to the high IGE levels then excess mucous production would be the result of the pro-inflammatory conditions right? I dont know what else could be making me less congested as this is the time of year I start to get worse with allergies and rain.
I will keep you all posted as a week after the first shot is when I started noticing a difference and I only just took the 2nd shot 5 days ago! This is looking promising
As far as Xolair I go in for my 2nd dosing shots on thursday but friday all I had to do was breath regular and I coudl feel 'goo' coming up my airways and I would cough and it would come right out. Also, I coughed first hting friday morning and stuff came out which is not normal for me, I normally have to 'coax' it out with treatments and coughing. I also coughed up two hard pellet like little dark green pieces about size small cous cous and I wonder if it is the xolair already working? If it is reducing the IGE levels already (which it should) then that is causing a reduction in my inflammation then it makes sense that things should be coming up easier and I may get some older stuff or even plugs up. This is my hope so we shall see! I say bring on the next $500 shot! Wow am I glad I live in the USA where I can say that, I figure if they billed $2,100 for a one month supply and I get 2 sets shots a month then that is about 1000 per dose and each does is divided into two shots so each syringe full is like liquid gold!
Now to bad part, confession time. Dear CF (& readers), I confess I have allowed you to get ahold in my lungs this week by failing to do my evening treatments 3 times! All the xolair and jogging in the world wont matter if I become a slacker again! Ok enough for the funny stuff. I am yelling at myself and so as a punishment I figured I would admit it to the world. I skipped my evening treatment on tuesday, tired, got home late and realized I was outside my 3 hour window for TOBI so I skipped. Then thursday and friday I fell asleep putting my daughter to sleep and never woek up! Bad bad. I dont get too down on myself if I flub one treatment a week but 3! No excuses. My punishment to myself? Well we are going to a party tomorrow and it will be from around 2pm unitl midnight and I am taking my respirtech and meds and missing out on some party tiem to do my treatments in evening, I woudl have much rather 'saved' my 1x a week flub for teh party but now that is not an option, I will also be taking my neb and flutter out on the town tonight when I take my husband out for his brithday.
Now wouldn tit have been much easier to just do them in first place then write out this long paragraph abotu scrwing up (the perfectionist in my is cringing just adimitting all this) yep, so maybe next time I wont do it! take care!
The 2nd test they take a tiny needle and inject just a bit of the same allergen just barely under skin on the side of the arm. So they tested 8 on my arm that they thought I hadnt reacted to on the back. Well the lady came in to 'read' my arm and she said "Oh my, I dont know how I will do this". All the dots on my arm had turned into one massively red area with white lumps at each injection spot. For the 'reading' they measure the size of the white raised areas as well as how large red area is. So they ended up just measuring the white raised areas and calling them all 'very positive' !
So now I am officially allergic, to everything! LOL So I will start on 3 shots a week next monday. The good thing is my work has a health clinic where I can receive the shots on a weekly basis after the initial one so i can do it on my lunch hour. The better news is I went to a really great allergist and he was asking about my history. He was very intrigued by my adult diagnosis and self diagnosis at that. He said I was an 'interesting case'.
He then asked me about my ABPA and IGE levels. My ABPA is considered in remission right now as my IGE has been stable for a couple years but it is still 300's which is way higher than the average persons woudl be. He asked if I had heard of xolair which I had read about on this site. I had then followed up with some research of my own and proposed taking it to my CF docs. Whom are very cautious and only go with what CFF endorses etc. They are great overall but two staunch old men stuck in their ways if you know what I mean. Anyway I told him why I wanted to be on it and what I had read about some CF'ers with ABPA getting very good results with taking xolair. He was informed on this topic (I didnt think he knew much about CF) and he also thought it was a great idea! Woohoo! I said that I was following with him for my allergies and it was an alllergy related issues so I woudl love if he woudl rx for me which he agreed to! He said I met criteria. He explained that if I reacted well to the medicine we could potentially see my IGE's decrease to minimal to nothing !!! That woudl be great!
So only kicker is I have to take shot 1-2x month at their office adn wait 2 hours after words to make sure I dont go into anaphylactic shock and then carry an epi pen for the next 48hours as 1/1000 people will react to it up to two days later. Small price to pay! He said they woudl monitor my IGE levels a couple times over 6 month period and I asked that when we got my first really low level that he fax it to my CF docs and I can tthen call and gloat and say ha ha! --because that's just how I am, when I know what I want I really want it and I usually always get it (it doesnt hurt I am usually right about these types things either) they just werent ready to try soemthing new but if I can get good results maybe they will let some of the others in their clinic. After 6 months treatment for allergies and Xolair I cant wait to see how my first fall will go. Change of seasons is killer and especially the fall so who knows maybe I wont even get sick this fall. I would highly recommend allergy testing to anyone!
I will be interestd to see what it shows I am allergic to this time. My last test was about 6 years ago and it showed dander dust pollen and an off the chart mold reaction--about a year later they figured out I had ABPA. Hopefully if i can start getting shots and reduce some of my allergy symptoms that remain even when on zyrtex singulair and nasacort it will be worht it but for now I am beign diligent in my treatments for fear I am going to end up sick from all my post nasal drip. If any of you even think you have allergies and are not on medications I woudl highly recommend it, I forgot what a difference it makes.
Sincerely, snuffalofagous (ok just how I feel)
Many of you know I am big into couponing to save money. I have found a new way to make my $ stretch even further! I am down to $100 week for total household consumables be it cleaners, vitamins, food, health beauty, dog food etc.
Last month I transferred 4 prescriptions to my local grocery store and earned $35 off my groceries. This month I transferred 2 of those 4 (the other two I no longer take) to target and earned $20 in gift cards.
Now this month rite aid is also having a transfer special but I belong to rite aid so I figured I wasnt eligible===very sad since it was for $30 GC up to 4x but I called and they said yes, I have 4 prescriptions through mail order pharmacy and rite aid said they could to 3 month RX, I would rather use them anyway I just didn tknow I could get the 3 month through them. Soooo you betcha I earned $120 rite aid GC for transferring prescriptions. Total for this month transferring RX = $140 !
As for the couponing todays retail price $348.04 total paid out of my pocket 87.36 (since around 60 was off a gift card) got back $35 gift cards/register rewards and will get back an additional $83.10 in rebates. I beleive that brings me to 'making' $35 for my purchases today---oh and dont forget the remaining prescription transfer balance gift cards!
Couponing has taken off at my work, I know hold a couon lunch once a month to share ideas with others and we have 3 coupon trains going at work, I even have manager/director level folks joining my coupon group! If you have any questions please let me know I am happy to help.
Anyway on to the update. We started Dave Ramsey's Financial Peace program on Feb1 just by listening to the CD's ourselves and I read his books. We start attending classes next weekend, they are 13 weeks of classes 1 night a week for 2 hours they are the same content as the CD's for the first hour and then activities in your workbooks and small group discussions etc led by a 'FPU leader'. We are very excited to refine our techniques.
NOW FOR THE EXCITEMENT! We payed off our first student loan today, YEAH! We still have one more student loan and our house left but we are doing excellentay! In 7 months and 19 days we have paid off just over $31,000!!!!! And almost as exciting two members of my group at work have gotten involved in FPU and had positive life changes and jsut today a third found out about my success and is talking his wife into joining and is VERY excited about it. This stuff just makes so much sense! If you are interested go to www.daveramsey.com, you can enter your zip and find the classes. or you can read any wealth of information on your own on his site for free OR if you want to start with a book read the Total Money Makeover its excellent and entertaining. I also have cool tools for debt snowball and an awesome excel spreadsheet budget template if you are interested PM me.
My husband is hourly so he is able to get overtime money and we have a side business that he works on computers so we get extra money from that so my way of contributing 'extra' money was to figure out how to cut our budget down. I have done so on groceries. I started out with who knows how much a week I was spending on groceries and everytrhign else for the house, then I went down to $150 week now I am down to $100 week and its EASY to stick to that for everything, food, cleaners, health and beauty aids, vitamins, dogfood, most of our diapers (we have a 'baby' fund but I usually just get them wtih grocery money) EVERYTHING!! I am saving the extra each week to buy our next 1/4 cow we will need in a couple months.
I now use www.hotcouponworld.com exclusively. it takes some organization and getting used to but I save ALOT. I routinely save about 90+% on all my health beauty aids cleaning products etc and probably around 60-70% on groceries. Last week at grocery store I saved 101 and paid 88 this week I saved 66 and paid 48 this week at walgreens I saved 84 and paid 24 12 of which I will get back in rebates. It has gotten so popular in the cirlce of ladies I know at work I know have a 'class' twice a month on lunch hour in a conference room and 'teach' others how to do it.
We have started 3 coupon trains and everyone puts in the coupons they dont want and takes out what they do want whcih is very helpful since everyone likes/needs different stuff. My pantry is full, my closets are full, I get all name brand, I buy stuff I always wanted but never indulged in before, we still eat healthy and I still buy alot produce! If you need any help let me know.
Two months ago at my grocery store I 'made' 90 dollars of a deal they were having that after coupons you ended up profiting so I did it many times, last month I 'made' 35 dollars for transferring my prescriptions, this month I 'made' 20 in target gift cards for transferring prescriptions and got 4 boxes cereal 4 boxes granola bars and a $5 gift card for $5 , I also just 'made' $6 just for taking 30 glade scented products and 5 cans of soup off of the stores hands LOL, whoever says you cant get something for nothing doesnt use enough coupons!
anyway I know some of you tried the couponing thing and some of you were thining of reading some Dave Ramsey books. I hope you will and I hope it will help you. We are to a point now where I am thinking of working part time in 2010 and there is alot instability in my company/field right now so the beauty of it is if I WERE to loose my job right now it would be OK, I cant believe we are at a point where I can say that!
By end of next year if somethien were to go wrong with either of us or our jobs it wouldnt matter! It is such ahuge relief to know that I am maintaining my health simply for my health and not because we couldnt afford to live if I wasnt working. I want to be able to make the decision to work or not based on how it affects my family and my health, NOT my finances. take care and drop me a line if you want to chat, I will send you my personal email so as not to suck up this site's bandwidth
In 3 months we have paid off 30.03% of our debt! We are no longer in any for cc debt and we have paid of almot half of our first student loan. Note when I read daves book Total Money Makeover I would read about people making rapidfire progress and I woudl say SURE but they are the exceptions blah blah blah. not so, anyone can do this, at any level, some progress will be faster, some will be slower but ti will be AMAZING compared to where you were in just 3 short months.
What do you have to loose? Get the book, read it, listen to it on tape, whatever you have to do. Anyway there is a part about focus and if you focus on things it will happen and I can say this is TRUE. Our income has went up just in 3 short months and our debt has went WAY down. We have made major spending changes in our life. We have sold everything we dont really love or need on ebay, craigslist, or in a garage sale. I no longer plan my meals then go to teh grocery store, I shop only sales and ONLY with coupons, yes of course I still get produce etc but there are deals on that too if you look around enough.
Dave Ramsey says women have a security gland that causes them anxiety when finances are not in order and even if we think we arent bothered by it we are, its always there, I never realized it except when we were having a problem and I say this is TRUE. Even though we could still hit catastrophe and loose every bit of ground we have made I think it is HIGHLY unlikely. We have just this week weathered one major storm and came through just fine.
For those of you thinking wow, that sounds boring. Not really. We still go out and do things, we still have our spending money to do with what we want. Occasionally we splurge on an entertainment fund. For instance we will still have a fun fourth of july but we wont blow a ton of money doing it, we will find other ways to have fun. Oddly planning what to do and then when we do go 'all out' it makes things seem SO SO much more fun and enjoyable kind of like if you eat brownies every day they are nto as good as a special treat! Our house and both of us are more peaceful, we are on the same page with a united goal and its wonderful.
Our storm this week was to find out that since we were idiots that thought we were being financially savvvy we have an ARM mortage that will reset next year (we were remodeling and then going to seel but with market and our new knowledge we decided to stay and pay off our house). Much to our surprise (joking) we have tried to refinance with 2 comanies and although we are approved our house is not. The appraiser loved our house and rightfully so we have redone it almost 100% BUT michigan market, especially around us with a huge # foreclosures is horrid he already told us we would get nailed. Our appraisals are coming in a whopping 40,000 less than 2.5 years ago (thank you michganistan) when we got the ARM which means according to them we owe more than its worth,,,,,ALOT more, like 20,000 more--ouch. So it is fine. We will hang with the arm because we have a PLAN. Before our lifestyle change this would be a major catastrophe but NOW we plan to finish paying of student loan #1 then throw every penny we can at the house and wihin a year of its resetting we should have it payed down enough to refinance and luckily it can only adjust a maximum of 4.0% that first year. Student loan #2 will have to hang out for a while longer but its at 4% so not a huge deal.
Note: just FYI my referral to michganistan is because my friend who goes to college for international relations with middleast focus of course goes to school wtih folks 'from a whole lot of coutnries ending in 'stan' and they read about and see michigans economy so they named it MICH-ganistan LOL indicating we are poor and in bad shape here, which we are. Thank you governor Granholm.
My favorite deal from yesterday was the bags of tilapia fish (yummo) are normally $6 a piece but they are on sale for buy 2 get 2 free and there is also an internet printable coupon out there for $2 off a bag so this comes out to $12 for 4 bags minus the $8 coupons=$4 for the fish, thats cheaper than hamburger! ---which is free this week with a new deal I learned by the way!
So I did 5 shopping trips yesterday, 1 lunch hour, 1 on way home (some deals you can only do x many per trip so to stock up you go more once), then I hit walgreens, meijer, and walmart after kiddo was in bed for my 'normal' shopping.
Tally for those 5 walgreens $75.29 real price I paid $14.11 (will get $9.35 back in rebates) $48.13 real price I paid $4.85 meijer $132.83 real price I paid $66.23 $88.98 real price I paid $18.44 walmart $23.59 real price I paid $1.16 Total full price 373.67 my price 104.79
TOTAL SAVINGS 72% ps I am still a rookie compared to the ladies at www.hotcouponworld.com what better do you have to do while vesting that figure out how to SAVE $$$!!!
To date we have paid over $10,000 off! Yahoo!!! We have over $45,000 in student loans to pay now but we will do it with gazelle intensity. Our next step however is to refinance our home, we are almost done with this. We are refinancing to a better term since interest rates are so low and doing a 15 year fixed.
FYI rule of thumb is that you should never take out more than a 15 year fixed you end up payign sooo much less interest--besides how many of us will be around to pay off a 30 year mortgage anyway? that aside if the payment for a 15 year fixed is more than 25% of your TAKE HOME/NET pay (not how much you actually make) then you are termed 'house poor' and it makes it nearly impossible to get out of debt and to a place of financial peace.
At the same time that we are refinancing our home we are working on looking for a reliable beater car to replace our 2000 ford explorer sport trac. There are soo many reasons why new cars are horrible for your finances I wont even go into it. They are wonderful luxuries WHEN you can afford them and 90% people with new cars cant they just do it because our nation is hell bent on holding it up as the ultimate status symbol. So even though we own our truck outright we are selling it after we find a mechanically sound gas friendly beater and hope to turn a nice profit and pay off a good chunk of student loans.
Other things we have done to make headway to financial peace: be weird, be very weird, because broke is normal in this country and I SURE dont want to be normal--why start now? bought a years worth Lillians clothes, books, toys including christmas at garage sales (do 2 years olds need to know things dont come in boxes? I think not)--she'll be 5 before she figures out 'new' toys come in boxes LOL.
became a pro at paying very little for groceries visit www.thegrocerygame.com
re-balanced my 401k portfolio at work to a good balance of mutual funds
set our bills on auto pay out of our checking account to ensure a balanced budget
advertised a bit more for our side business as every extra dollar counts
sold every CD, DVD, and other luxury laying aroudn our house on ebay (Still in progress) preparing for a garage sale for non-ebay friendly items
re-balanced our W-2 witholdings to ensure we dont get a refund next year (why loan the government money at 0% interest when you could be paying off YOUR bills?
found fun free things to do as a family
If you ever want to listen to his radio show you can go to the above website, click on the top box listen to dave, archives, pick a day, and it will give you streaming audio, I listen to them while doing treatments and it makes the time fly. If you ever want to hear a really cool day then listen to fridays shows because it is all folks who have worked really hard and payed off all their debt and they call in to tell about it and what was hard/worked for them but mostly just to revel in their success. I used to think it was kind of annoying but now that we can envision ourselves making the call it is very inspiring.
I am giving away a little more about our finances than I would like by journaling this but I think it is worht it if I know it was beneficial to just a few and when I journaled about my AI journey I found it did help some others. So let me just say this before revealing our results for the last two monts. We are a middle income household living in a reasonable (read 100,000 range) house. There is nothing special about us.
When I read Dave's Total Money Makeover book I read about some of the couples making massively fast progress and thought "Yeah but...." and filled in all the reasons why our success could nto be that fast. Not only that but when we did the numbers we thought we could do with our budget we would have made very very slow progress. However, as you will read (I hope) once you get 'gazelle intense' you focus all your energy on this budget and scrape away any excess you can, work extra etc etc things start to fall in line and they have for us, so with no further ado.........................................
Started Program Feb 1 As of March 31 (yesterday) we have paid of $7844 in debt and have an emergency savings account of $2650 Total money saved/paid in 2 months = 10494 Note: We put $650 in our small business account so we can quit muddying water in our personal account when we need to buy parts etc. Dave only recommends 1000 in savings account but given my health and volatility of my husbands current position we decided on a bit more. Also to be fair $2000 of that is tax return.
We will not always make this speedy of progress, like I said alot things fell in line for us but they are things that normally would have been diluted by any various number of things such as additional unneeded expenditures etc etc. We anticipate being able to pay off $20,000 by years end but are shooting for a bit more.
PS My #1 favorite way to save money is on groceries, you know those crazy women who pay a fraction of what something costs all the time with a million copuons and rebates and have a mini store via a pantry or basement? I am now one of them and proud of it! Ask me how many coupons I had the last time I went to walgreens? 28!! Its easy. Visit www.thegrocerygame.com to learn how and you can get a 30 day trial for $1 after that it is less than I save in one trip to the store for 8 weeks! If you join PLEASE put my name (I will give you in PM) and I can get money off my subscription. If you have any questions I'll be happy to help.
So far I have read the books the total money makeover which I highly recommend as the first book you read and secondly financial peace which I also highly recommend. My husband and I went to the live event Jan 24th and decided to start the program on February 1st. Since February 1st we have 1st saved $2000 then we paid of $3,300 in credit card debt. We are on a roll and doing great. There are SO many ways to save money and make extra money and we are working hard. Everyone can do that, we arent special, we are just determined. My #1 motivation is being able to decide when I should 'retire' based solely on my health and NOT on my need to work. We are GAZELLE INTENSE, you will get that when you read the book! We are only going to be able to do that by learning to live on less than we make. Sounds like a boring time? Actually we are so happy and very content and more in tune and relaxed. Its great. I highly encourage you to read the books if you have ANY debt. We have a plan to be debt free within 7 years--tops, we are talking everything, home included !
Step One of the 7 step program is to get a $1000 emergency fund. I know it sounds hard to many, harder yet to some but the main part of this program is you have to have a paper budget and you have to start living dand thinking differently. Seriously the thinking part is the hardest I think because we as a society have been ingrained with so many myths and absurd ideas. My parents had HORRID finances as did hubbies and I think that you if you go by what society teaches (subconsciously) unless you have seen another way that is what you go with. Many need to sell their vehicle, its the #1 mistake, see below. Some need to sell their house because they bought too much or a bad deal etc.
Hubby wants to do this program and we are going to do it 100% but also doesnt want to be miserable (i.e. read bologna sandwich lunch and no cable in his world ha ha ha) SO we each get to keep something frivilous, I chose my gym membership and he chose cable but agreed to a smaller package and one tivo. We are giving ourselves small budgets for clothing and entertainment in a month or so but for february we are on a strict no spending rule to see exactly what we can do if we reallly try.
I will list ideas that we have for saving money in hopes someone might get an idea or better yet leave me another idea, we are tapped otu of ideas! Another way to start getting that 1000 is to sell sell sell, it is recommended in Dave's words to "sell so much stuff the kids are worried they are next" LOL. We have went through our house and part of our basement and have a room chocked full of 'stuff' to sell, we also have a bit of stuff in storage at my sister in laws that we moved out in an attempt to declutter the house and get ready to sell our house, my thinknig is if its in storage it is almost certainly something I dont 'need' and most of that will be sold. You can buy more stuff later when you have MONEY!!
OK here is some myth busting Debt has been MARKETED to us in so many forms and so aggressively since the 1960's that to even imagine living without it requires a complete paradigm SHIFT.
Myth: Car payments are a way of life, youll always have one truth: staying away from car payments by driving reliable used cars is what the typical millionaire does. thas is HOW tehy became millionaires. Average car payment is $384/mo if you were to buy only what car you can afford and invest the $384 month instead you would have 6 MILLION dollars at age 65
Myth: you can get a good deal on a new car truth: a new car looses 60% of its value within 4 years. This is the largest purchase a consumer makes that goes down in value. Do the math: a new car selling for $28,000 on average will loose $16,800 of its value in 4 years. You are LOOSING $350 per month in value!!!! Some ideas we have: cancelled our movie rental memberships cancelled hubbies gym membership move to a credit union (no fees, higher % rate on savings and checking) carpool hubby pack lunch (I already do) no more organic foods and fu fu stuff--me! shop and plan menu according to sales not whims join coupon website and research ads at different stores not one stop shopping use more bleach vinegar baking soda, less cleaning agents kiddo remains in garage sale clothing (have to buy for whole year in spring!) turned down thermostat ok lots more but I'm on brain drain, give me yoru ideas
We are 'average' meaning we make enough to pay our bills, hubby pays bills as they come in, we do have times-moreso now that we have a child where we are cutting it close and then something happnes and we put it on a credit card (with every intention of paying it off) well we all know how that goes sometimes. We always try to have a savings account but its never very big, we both like to buy 'stuff' a little too much etc etc
ANyway neither of us is particularly good with finances, for example we know its important to save and have been putting TONS of money in 401k (mistakenly so, will explain later) but neither of us has ever learned to budget--we just pay as we go etc. Anyway we have already learned of alot mistakes we have made.
I figure being a CF'er being debt free and finanacially independant is SO SO SO important that I will talk abotu it here in the hopes someone will decide to try it as well. We are enrolling in the 13 week course as well, we are jsut waiting on our materials. Program consists of 6 baby steps, will discuss the first one soon..............
PS DID YOU KNOW??? Nearly 70% of all consumers live paycheck to paycheck? this year, more people will file for bankruptcy than graduate from college? in 1929 only 2$ of homes in america had a mortgage against them and by 1962 only 2% DID NOT??? (PS the income to home ratio was BETTER in 1962 meaning their homes cost them 'less' compared to how much they made than in 1929)
Basically new dr thinks its infectious in nature a new bug not showing in sputum culture etc and is nervous to give steroids and have something 'take hold'. So as a cautious path he is doing the cultures out of the wash and then we will examine the steroid path if nothing new shows up. I think its inflammatory in nature.
ANyway of course they retrieved lots blood and clots from my right lung but oddly enough the left has been hurting more often then the right. I felt fine for a few hours afterward then my temperature plummeted and I was freezing beyond belief, then it skyrocketed from its low (not sure how low it got) past my normal 96.8 (I run low anyway) to 102. I feel very tight chested, very achey, still low grade fever, all my joints hurt.
I guess I feel flu-like which I read can be 'normal'. But I was just wondering if its normal to be so short of breath, I cant even make it to the red zone on my peak flow without a treatment. I did call nurse and she said take albuterol Q4 but even after that I dont feel normal at all, I cant walk up a flight stiars wihtout my heart beating out of my chest. Do you think its irritation from the saline?
Any experiences you have would be greatly appreciated, I'm trying not to be a whimp. I probably should have taken today off but I went to work now I'm whooped. I have very important days at work thur/fri too so now I am torn on what to do. I already missed 5 weeks of work this year for 2 rounds IV's back to back, I'm in a new job and I have alot folks counting on me.
Yesterday showed an FEV1 of 92 after my post IV one a few weeks ago was 103%. The doctor said that although the FEV1 was not that bad that combined with my intermittent bleeding and lung pain over the past week and my extreme fatigue did = a problem. What is interestign is since they just did a culture agian last week it showed no PA, I ALWAYS culture PA and acrhomabacter. This time no PA, moderate normal flora with a few yeast, and moderate to many achrombacter. The instructions on achormabater are not very clear, generally it is believed that they do not cause a problem BUT since they are the only thing showing in the culture we will treat that. They are resistant little buggers so they are intermediate sensitive to merropenem which we did last time for the 3rd week and sensitive to Zosyn which we will try this time. I will also do tobra because my culture 2 weeks ago did show PA so to avoid possible resistance when treating with monotherapy we will do the tobra as well.
I am assuming they did a crap job on my clture and did not find the PA and its still there however if the benefit of 6 weeks of antibiotics and starting two more is that I do a good job killing down the PA then that will be a good side benefit. Sooo the plan is that I am getting an OGTT today since I have not had one since I was pregnant with my duaghter just to make sure as it could explain some of the fatigue. Then we will test IGE to make sure my ABPA is not flairing up although my xrays look good and lungs sound clear. I will start zosyn today and next week if I am not 'back' to snuff I will go for 1 week in hospital. I have never been in hospital more than 1.5 or so and I HATE IT. Doc feels I need to not be run down, rest etc and wanted me to go this week but I refused but had to make the deal for next week if no improvement.
So I am to REST while home etc so hubby and I had a serious tlak last night and I am not to lift a finger. I am also doing vest and HTS 4 times a day and going to try and jog each day with my huffing process as well to see what I can get up. Fun fun fun. Also we are probably going ot do a fecal fat as I have some indigestion issues they want to check out, they want me to start on enzymes but I really dont think I am PI. ah well I am rambling and about to get my last blood draw so I better close up shop so I can go EAT ugh I hate these tests, headache, nausea and lethargy I always fele horrid the rest of the day!
Pre diagnosis (birth-21yo) I had so many times where I 'knew' something was going on in my body but noone understood, took the time to listen, or if they did just couldn't figure it out and I HATED that feeling! To this day if someone acts in a manner in which I think they are treating me stupid or like they dont believe me I have a tendency to freak out. I absolutely hate feeling belittled or not believed. I dont have a PhD but I AM in tune with my body.
SO anyway after hemoptysis last night, not much, all bright red, tiny clots, ended within an hour I went to CF clinic today. They already did an xray last week which by sounds of it looked better than prior years and I couldnt blow PFT's since I had bled within 24 hours so we just did the chat. Dr. says we need to do some sort tretment, orals or IV's question is what. I told him I was 100% committed to doing anything that needed to get better but I felt uncomfortable doing a 'just because' I want to know what is going on and why we are doing it and I am a bit annoyed at this point.
He said he understood and wanted to check my cultures, they had done two recently and they showed the same as always with only notable things being mucoid PA sensitive to all IV's and cipro/ceftaz (never work for me though) and achromabacter x which is resistant to most everything.
PLAN: well he said with my recent bout of low grade off and on fevers coupled with occasional joint pain perhaps I have one of the rarer bugs causing pneumonia and that by the time they tested for it I could have treated it as the treatment would be 5 days zithromax so instead mwf I will do 5 days straight and see how that goes and check back in a week. In the mean time I asked him if they checked my cultures for myco bacteria and he said no but they should probably do that so we did another culture today.
I will check back in next week unless the bleeding restarts. fun fun fun I am still having pain in and around my left shoulder though they couldnt hear anything (they never can) my lungs always 'sound good' the doctor even went and got his 'good' stethoscope last time and disinfected it. so I guess it sounds reasonable, I am glad I dont have to miss owrk things are CRAZY right now and I submitted paperwork today to get a loaner laptop for a 3 month period so if things do go awry I can keep up on my work which will take a bit of stress off of me.
So what do you think? Does it sound reasonable? any ideas??
end jan-got cold Feb-doc visit #1 FEV best ever even with cold left doc turned down orals since they dont work and was convinced it'd be 'ok' feb-doc visit #2 PFT's down from prior weeks visit, more run down feeling (sick about 5 weeks by now), but doc said numbers were still looking good so option for orals or IV's I went with orals dumb dumb move.
end feb-->Mar-did 2 weeks cipro and did not feel better, waited a week to see hwo things went then went in for follow up numbers were lower and feeling abotu same, perhaps more productive cough. FEV1 down about 15% Mar-1 week IV TOBI/Ceftaz PFT's caught stomach flu followed promptly by head cold, week one showed I had recouped 5/15%. Felt slow progress due to flu bugs and stayed same course for week
2 Mar-week2-IV TOBI Ceftaz I knew it was not working thought maybe I was being a pessimist, down 2% from the first week. Believed that my achromabacter was source problem instead PA so switched from ceftaz to merropenem and added levaquin for week
3 Mar-->April-week 3 sick as a dog with nausea and diarhea will never do merropenem without IV zofran again. Numbers highest ever at FEV1 of 105.3 but I dont feel 'right' tell doc, ask steroids, tell them something is 'stuck' but to no avail I get the '#'s look too good routine' and sent on my way.
April-one week post anti's. Go back see doc #2 at clinci tell him my concern including the feeling from previous week and some intermittent light pain in my right lung/shoulder blade area (that I got a chiro adjustmetn and massage for to ensur eit was not muscle) he does a very thorough exam and chest x ray with the results of all of them looking good. I tell him I no longer feel soemthing is stuck and I did get some good stuff up after taking mucinex. My PFT's are showing 20% variability anywhere from 5 to 25% below prior week, we look at the prior week and it too showed high degree variability (unusual for me) and we accounted it to teh 'stuck' feeling I was having as after I felt something move I got the really high number. Doc #2 believes that I have some lingering bronchitis that seems to be improving since I am feeling less like soemthing is stuck and believes it will continue to resolve on its own. He asks if I accept this and I say yeah I'll buy it (thats on tue).
But, over the course week up until this past fri I just feel soemthing is not 'right'. Friday (3 days ago) I caught a throat bug where you sound hoarse but dont feel bad but then it progressed to me having a slight temp and feeling bad by the evening, I remained the same throughout the weekend. Sunday was better but I was pretty wiped out by the night time. Monday (today) I felt like every time I breathe there is a string tied to my shoulder area pulling on it, it hurts. It was that way in morning and I was so tired, I slept in and went to work late, I jogged for a couple miles before work trying to get some stuff up, I was very productive cough all morning of some really dark nasty stuff then this evening I BLEED I have not had hemoptysis since I was doing IVF in Mar2006. I was standing in bathroom, coughed and whammo, there it is, I didnt feel it building this time of course I missed some signs since it has been so long and my back etc is already sore like it was this morning. I absolutely hate coughing up blood but there it was, it was bright red and tiny little clots. There was not alot of it, a teaspoon or so, perhaps more later when it was mixed wiht mucous. I am so pissed off, I KNEW somethign was wrong, now of course they will believe me. I have waited a couple hours and it stopped so I am fine. I am thinking of pagin them anyway because they will tell me to go to hopsital and I will tell them NO I am not any more sick today then I was last week when I TOLD YOU something was wrong.
Anyway I am just pissed of at my body and I have NO idea what is going on. I knwo this is so minor compared to most folks but since it is the worst I have experienced (not rebounding) it is bad to me. I am taking over a very busy highly visible area right now and I already missed three weeks, there is so much I can do in that area and I can make big changes and I have already started and I just dont want to miss. My company overall is being idiots though and not issuing laptops so they did not get me a laptop, now maybe they will, otherwise they can keep paying me (since I am salary) to do nothing, they could have more than paid forrmy laptop many times over with the # they are paying me to do nothing. I really cannot afford to miss more time but I will be putting my health first----I have to keep reminding myself of that.
Anyway if you have any ideas suggestions thoughts let me know I culture PA and achromabacter x have ABPA which I dont think ahs flaired up due to being on xolair but I will get an IGE drawn tomorrow anyway, on allergy shots, advair, singulair, zyrtec, nasacort, multi, calium, magnesium, B vitamin, vitamin C, probiotic, TOBI, xopenex, hypertonic, 2 vials pulmozyme.
15Apr2008 (post IV's) FVC 108.2% (gain 2.9%) FEV1 103.1% (gain 3.8%) FEF 25-75% 95.4% (gain 6.3%)
Reference: 25Mar2008 (Pre-IV) FVC 91.0 FEV1 84.2 FEV25-75%69.6
21Feb2008 (Previous Best) FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
Now you see why I was looking so adoringly at them! Side note is that I am going to be a movie star! Our new respiratory therapist really is into educating patients and she commented many times that I huff very well (between PFT's etc) this time she was lamenting that she wished she could teach her kids my huffing specifically an 8 year old that is starting to face problems and she just cant find a good video and when she does it it doesnt sound the same since she is 'dry' huffing. So I told her if she wanted audio or video and though it would help someone out I would be glad to comply! So, next time I have to dress nice and we will be video taping me for her other patients. I told her it would be a good idea to get me as well as anotehr patient that perhaps has a more productive cough than I do since it would be good to see and hear different sorts huffing.
If anyone has audio or video of themselves huffing or autogenic breathing or coughing that you dont mind sharing that would be great too!
The not as happy part is I still have 'something' stuck my first PFT had a FVC much lower, I blew, felt something 'move' and then I was able to get better numbers BUT I havent gotten anything up. I told my docs I felt everything was dessicated in there due to 5 weeks meds (2oral/3IV) and that I wanted some prednisone to open things up in there so I coudl get it out. He disagreed. I told him not only do I have something I can feel is stuck but when I cough hard enough I can taste it and I get intermittent lung pain in the same area once in a while which I believe due to a plug. He stood his ground and refused and wanted me to 'keep doing what I am doing'. I am doing everythign correct, there is nothing he could add to my regimen I am not doing so what the heck is the harm in letting me try a burst, just a few days I dont want to go on them long term.
Anyway if it was just this one thing it would be no big deal but overall I dont feel they are aggressive enough. My PFT's are good so they alwasy think it's 'good enough' but they thought this when I was running mid 90's too so what if I am at 100+% if I can get something out and get higher what is the problem. Anyway maybe I am wrong on this thing and steroid burst isnt best idea but I am thinking of checking out another clinic at UofM, it would be a 2.5hour drive for me but its worht thinking about.
Soooo my plan is to do HTS in my portable on my lunch hour, and on my way home from work in addition to some extra vesting at night and of course my normal TOBI 2 pulmozyme and xopenex. I also am going to get out my acapella and try a bit of that, which to be fair that in addition to giving it a week or so to see what I can do with the above plan was my docs recommendation and it does sound reasonable *I guess*. Anyway I am in love with PFT's and goign to try and get them a bit higher yet with some running and clearance!
Self Notes for next time: sick Jan-Mar=auto IV's TOBI dose was 500mg did draw through port--next time do fresh draw Ceftaz dose was 850mg did not work Merropenem was 2g plus levaquin 750mg, did work but next time get IV zofran
So checkup today was interesting since I feel worse but my PFT's were slightly better htan last week, normally I shoot up immediately and they sometimes let me off with 10 days instead of 14, not this time . Now I have to kick some major bug butt this next week and NOT catch anything else!
On a side note my daughter (15mos) took my completed eclipse ball and held the tubing portion up to her chest (where my port is), and walked around with it, too cute/funny...kind of.
Today: 1 Apr2008 FVC 96.8 FEV1 90.2 FEV25-75% 73.5
Pre-IV:25Mar2008: FVC 91.0 FEV1 84.2 FEV25-75%69.6
21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
Well I caught a cold back in begining february and it was SO mild I would not have counted it even, but it felt 'different' then it either picked up or I caught another one and it was the one everyone around me has had where you hack and hack but its a dry cough that just DOESNT go away. So about day number 10 I went to CF clinic and had record breaking (good) PFT's so I declined the levaquin (which never works anyway) and went on my way determined to beat it, about a week and a half or so later and I knew I was in trouble and went back to clinic my pFT's were down and we decided to treat it now I always get sick end feb-beginning mar so this was the same but since it was 'so mild' we decided to try cipro (sometimes works) even though I KNEW better, I ALWAYS get IV's feb-mar so I did the two weeks of cipro and felt horrid levaquin is not bad for me but cipro or IV's do a # on me.
So 9 days later (yesterday) back and clinic and surprise surprise I am on IV's with FVC went from record breaking 105.3 at the first of the 3 'sick visits' to 91 yesterday, my FEV1 and small airways were worse but I forgot to get a copy. So of course not 'bad' numbers but not good for me.
My lesson learned is to be more proactive, I coudl have done IV's and been DONE and feeling great by now if I had just done them in the first darn place. This post is to remind me for me to look back on when I dont want to go in or want to try cipro again! ANY TIME I GET SICK JAN-MAR I WILL DO IV"S!!!!
The only thing I have accomplished is draggin this out over 2 months plus! ok self beratement rant over on the positive side I was very calm about the IV's this time, I recommended them, I went back to work sent out emails tying up loose ends, putting documents in share areas for others, turned on out of office communicator, gave a brief lesson to my new group about why I needed to miss when I seemed fine before lunch etc and bid my farewells until 4/10.
I have NEVER done this, I was a stress ball freak out mess about having to get them, tried to work thorugh them alot of times, didnt do all my therapies etc, the past two times I did IV's once I did stay home I did MUCH better. Now I made a spread sheet of all treatments meds excecise I need ot do every day and check them off as I go, so far so good.... oh except little on is home puking, GREAT, first day of meds when I feel like puking and I am cleaning up that and lots and lots of #2 yeah fun. It is kind of nice just to watch her and relax with her though, the house be *^*(# I dont care we are relaxing!
25Mar2008: FVC 91.0 FEV1 84.2 FEV25-75%69.6
Side Note: Lung age years (55)--ack, my lungs can go from 28-->55 in 4 weeks!
21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
I noticed big changes already in August when I posted about FYI plans (For Your Imrovement) plans but there is always room for improvement. So to hold myself accountable here was my plan: 8/25/07 And Now For the Record . . . Here is MY FYI plan started taking B complex & magnesium fought to get an e-flow (unsuccesfully) started HTS continued with allergy shots started xolair shots started jogging and completed a 5K checked out the book my Dr. Perricone about anti-inflammatory diet put a bottle of water in my fridge with a note to take my probiotic pill I completed all of the items in my plan--yeah!
I didnt however stay on task with taking the probiotic (I just started back up this week) and I have been out of the B-complex for a couple weeks but adding it to this week's grocery list. I did however complete not just one but TWO 5k's with respectable times !
So what did my lifestyle change and hard work get me? Well a fellow blogger's post just got me thinking about this. Generally I am in my CF clinic perhaps 5-6x a year. I generally get admitted for hemoptysis 1x a year and of course get IV's then I end up perhaps on IV's one more time during the year and take oral's perhaps 2-3x a year.
So, let's just say I end up 'sick' enough for treatment 4x a year (that's way conservative) on average. Looking back at this year I was not hospitalized for hemoptysis-yeah (crossing fingers for remainig 3 days of year LOL), I did get orals once but they werent working so I went to IV's so that counts as one bout since that happens with me alot.
I actually didnt believe it, I had to go back and look at my records and sure enough July was the only time I was at CF clinic for more than one visit (meaning I was being treated not just a checkup). So my hard work and dedication got me a 75% reducation (at LEAST) in sick times etc and I was not locked up once.
And for the record it is not because I am more willing to just not go in when sick (being a busy mom etc) because my PFT's are UP about 10%. Yee Haw! My goals for next year are to continue on my path but get in great shape (not just decent like now), loose a few pounds (extra weight can hinder your lungs not to mention increase risk of a host of other factors like diabetes etc), and continue on CF Forums and see what other good ideas I can come up with (errr, *borrow* from others)
LOL! I am documenting all this in the hopes that someone out there, perhaps a teen who is in the 'it doenst matter what I do' phase will see this and have proof that it compliance really CAN make a difference.
Last time my PFT's were at an all time high post IV's (I can never re-produce post IV PFT's when not just off IV's) anyway here it goes:
25Jun2007: FVC 105 FEV1 97 FEV25-75% 82
4Dec2007: FVC 99 FEV1 91 FEV25-75% 77
So all in all not bad since I am 'only' 6-7% lower and just coming off a really rough cold and its a rough time of year to start with. BUT I was really hoping to go in 2 weeks ago when I was scheduled to go and see my numbers pretty clsoe to the same which I am pretty sure they would have been. I am pretty confident I can get back up within a week or so, if I dont feel like I am back to baseline I will call and go back in just for a check. My husbands friend invited me to a 5K on thursday but I dont think I have it in me again just yet so hubby and I might take the little one and walk it with stroller since it is a 'stroll through the lights' for the holidays.