Here’s a little taste of my reality.

I finally broke my long standing record and have been hospitalized four times this year so far (once was for the sinus surgery which was totally successful, wish I did it a long time ago).  Each time I was stuck with a picc line for IV antibiotics (usually a cocktail of three drugs) which lasted three weeks each time.  Not to mention I am usually sick / down-and-out for the previous two to four weeks ahead of that.  Leaving not much well time. 

I don’t think that a lot of people understand what I go through when I am sick.  Illness leaves for a very hectic schedule with little sleep and no room for socializing, writing a blog, answering emails… you know… all the fun stuff?!    A few of my friends had a small realization of what I go through when they came to visit me in the hospital (thank you friends, you mean so much to meee!).  After for chatting for a few minutes, we would be interrupted by a nurse coming in to hang my IVs (3-4x a day), a CNA coming in to check my vitals, a respiratory therapist coming in to give me nebs and to beat on me (4x a day), someone to take me for an x-ray or some other test, “room service” bringing me more food and coming back for more when they screwed up what I ordered (EVERY single meal).  It is not a very restful or peaceful time.  I hardly get to do any work (I took my laptop with me in hopes I could get some work done so I wouldn’t have to owe MORE vacation time).  Nope, not even time for work!  LOL

Now all this gets harder when I take my IVs home with me. In the hospital I don’t have to wake up to hook up to the dose at 6am or I could fall asleep early and not have to worry about unhooking from my meds at 12pm. At home that leaves me with 5 hours of sleep a night (remember I am sick, trying to get better).  Between no sleep and the side affects of the drugs I am a miserable mess.  Not to mention I usually need to go back to work because I am always in debt with sick and “vacation” time.

This is far from a tiny portion of how crazy my life has been like over the past month…

Ok ok ok… enough complaining…

As for the good things this month?  I was contacted by a writer at Diabetes Forecast magazine (put out by the American Diabetes Association).  They are doing an article in November (I believe) on diabetes success stories and I will be one of the folks featured in the article!!! YEAAAA!!!  Just after I got out of the hospital, PICC line in place, I got pretty pretty pictures taken of me for the article. I have no idea how the article is going to turn out, hopefully better than the TV news story I did about 10 years ago, but I know at least the photo turned out good.  Unfortunately it didn’t show the true me, the spunky me, but it was a good commercial style photo so I am not complaining.   I’m planning on posting the pic after I watermark it… which may be a while.   hehe

Now I am working closer with CF, and also closer mile-wise to my clinic, I have become a happy little guinea pig once again for some CF research studies.  Two studies I did in the hospital and now I have three longer term studies lined up to begin as soon as my month of Tobi is over.  I am very excited about all the new research coming out for CF.  The one I am most excited about I blogged briefly about in my previous post.

My blood sugar is still a bit crazy since moving into my mom’s house, but that will be under control soon. Although my condo still has not sold, I found an apartment that I will be moving into in November.  I don’t know how I am going to swing a mortgage payment and rent, but since my health is in the balance, I pretty much have no choice.  It has been too stressful, a bit too much for my little body to handle.  Hopefully I can get everything back into control (including my sanity, haha when did I ever have that!) after this next move.

Hmmmm… today is my second favorite holiday!   Happy halloween everyone!!!  For work, all the girls dressed up as cowgirls (including your’s truely) so we could be the pulmonary posse. Oh my how cute we are!!  I even had the brilliant idea this morning as I was tangled in my oxygen tubing, to hook some to my belt as a lasso. Such a great idea!!

Tonight, if I go out, I have a sexy little referee costume.  Wish I could bring Brodie with me.  The cute little guy has a Bronco’s jersey.  Totally adorable!!  Hoping I can get some pictures before I get too anoyed with my costume and end up in jeans like I do every year.

I’m trying not to eat too much junk today, but it is oh so hard! Here’s a pic of one of the goodies that was passed around earlier. I think it is supposed to be a finger cookie.  Haha!

Hope you all had a great month!!!

Stuck mucus is the perfect breeding ground for bacteria. When bacteria takes over it causes an infection, similar to pneumonia, we call it a CF exacerbation (exacerbation means “to increase the severity, bitterness, or violence of (disease, ill feeling, etc.); aggravate”). For me it means 3 weeks of IV antibiotics to tame the evil bacteria. Continuously I have an infection since I can never clear out enough of the mucus that hangs out in my lungs despite taking hours a day doing breathing treatments which include inhaling medications, inhaling super-salty-saline, and doing physical therapy with my Vest, or having a family member or friend literally beat on my body. So my treatments vary to the degree my infection is on any given day. Infections cause permanent damage to the lungs, bronchiectasis, pneumothorax (collapsed lung), and some other really horrible things.

Any cold-virus I get, even allergies or any other irritant like cigarette smoke can cause enough excess mucus for an infection to kick into high gear. Less than a month ago I completed a “tune-up” which is what we cystics call it when we have to put most of our “regular” lives on hold and focus on maintaining our bodies. A tune-up consists of two to three weeks of IV antibiotics (sometimes in the hospital, sometimes at home), an oral antibiotic may be thrown in for an extra measure (all causing some wonderful side affects!), three to four physical respiratory treatments a day that last about an hour each, upping the number and doses of inhaled medications, among other stuff… all of this to help clean out the crud.

Over the past couple of years I have realized that my current method of airway clearance is not working for me. Having been fairly compliant with my care recently, I still had a steep decline in lung function caused by an infection taking over. I desperately need to find something that will help me get this thick sticky infected crud out of my little lungs. It has been less than a month since my last tune-up and I am already starting to feel overwhelmed with lung crud again. My “real” life is no where ready for another tune-up, I owe my work my first born (which will be difficult since I’m not having children) because of all of the “vacation” time they are letting me borrow, bills to pay, house to clean… I am not ready for another interruption.

For maybe 14-15 years I have been using “The ThAIRapy Vest” by Advanced Respiratory (company purchased by Hill/Rom in 2003). My machine is old, but still functions. The actual vest that I wear blows up with air and pulsates/vibrates my lungs by varying the air pressure within the vest, squeezing my chest. This Vest caused a financial pain in the patoot because when I first received the machine, it was supposed to be for a free 30 day trial. Unfortunately the company immediately charged my insurance, maxing out my lifetime maximum of durable medical equipment coverage. So even though I didn’t like the machine and it didn’t really help me, I was stuck with it. Without any insurance coverage left, I couldn’t get a different type of device.

Now that I am all grown up, I have my own horrible insurance coverage (that was my dad’s insurance that was maxed out, which is now my secondary since I am legally handicapped, but it still doesn’t cover much and has NO DME coverage left). I have a new lifetime max of $10k for durable medical equipment (DME) with my current policy. Now, my insulin pump and CGMS (IF, (big IF), the insurance agrees to pay their portion) will be going against the DME coverage. Leaving me not much coverage left to buy a new airway clearance device, which I need since the Vest is proving not to work for me and I am not getting any healthier. These devices cost between $10,000 and $16,000.

Recently I have tried out two different pieces of equipment, one costs $12k and the other I am still trying to find a price, but it is upwards of $10k. I really like both decives, and both have been effective forms of treatment for me, but there is no way I could ever afford both even with insurance. I am going to write up a review of my opinions of each piece for others, as I have promised over on the CF message board, in short time. I am trying to decide if another fight with my insurance company will be worth it. The stress that fighting causes me is something that really affects my health anyway, so I am trying to balance in my head if I can handle it.

I asked my case manager at the insurance company about getting a new Smart Vest and she said “we almost never approve those”. I know I will be in for another hard battle if I decide to go for it.

Oh yea, I forgot to mention I tried to get an upgrade to my current vest system, and insurance denied it. I think the newer machine would work better for me, but I haven’t tried it yet. That would have only cost $6,000.

I wanted to get you up to speed with my newest struggle before I posted my reviews of the airway clearing equipment. I will be posting my reviews of a Intrapulmonary Percussive Ventilator (IPV), The Frequencer and The Smart Vest very soon for your reading pleasure! The Frequencer is quite an interesting little device! Can’t wait to tell you about it!

Oh, while creating links in this post I came across the article on CF on Wikipedia. I think it is very honest and true to what CF is. Take a peek at it if you haven’t already. Cystic Fibrosis on Wikipedia. For some of you it may read like the worst case scenario of side affects you may read on the side of a medicine bottle. But in all honesty and actuality, every person with CF most likely will deal with all that is listed on the page at some point in their lives.

Last week I was on a short burst of Prednisone to help ease some of the inflammation in my lungs. What a number that did to my blood sugar levels (pun intended )! Can you say SKY high?!! I was on twice the regular amount of long-lasting insulin, and my insulin to carb ratio was 1gram:5units, which is also twice the amount of my usual. It took a while to figure that out so on average I was taking 6 shots a day, to cover everything. Apparently steroids, natural and medication-wise, have a huge affect on the body’s glucose levels. I am going to look more into it because my geeky mind is really curious. I’ll let you know more about it when I do.

I am not sure if it was the Prednisone, or if I was just feeling better, but my appetite was HUUUGE! I gained 11 pounds over the course of those 3 weeks, from 104lbs to 115lbs. Unfortunately stress really affects my appetite and when I went through that heartache, I dropped most of the weight. But I am doing better now and hoping that I can regain most of it back. I felt soooo healthy. I am one of those rare women who love to hear “you are looking fat!” Because to me, it means I am looking healthy! I REALLY do not want to look at my food bill from the past month… I bet it is as large as my appetite was!

Wish I could show you my happy dance! I do my happy dance every Friday while my co-workers laugh their arses off at me! Today get’s an extra little rump shake! YEAAA!!!

On another front, I am dealing with a lot of other personal relationship issues, it is sad. Which makes it a little hard to put my life out there in writing right now.

Let’s see…. where to start…. update… What I have been doing: 3 IV antibiotics 3x/day (takes about 1.5-2 hrs each time), occasional saline fluids in the evenings (takes 3-4 hrs) to rehydrate and physical chest therapy twice a day (should be doing it 4x, but since I have to work there is no time).

I now OWE my work sick time and am not looking forward to owing them even more when I get my sinus surgery in a few months. This just doesn’t make me comfortable.

Wednesday was my two week checkup. Breathing tests went from 54% to 57%, really not much improvement for the extent of my care over the past few weeks. So now I will be doing IVs for one more week. Having horrible side affects (a different drug cocktail than I am use to).

Added Prednisone (steroid) today to calm down inflammation. (lungs are really tight and wheezy). I hope this works and maybe it will help me get rid of some of the plugs on my right side, giving me back some more of my function, but this is only a guess. Prednisone is going to make my blood sugars go insane, which may cause MORE dehydration.

My current dehydration has caused another blocked intestine (oh such a lovely pain), which luckily I caught early, so things will be moving a little better with yet, more drugs.

I also have thrush in my mouth which is caused from a combo of diabetes, infection and antibiotics. Soooo… one more pill to take! ahaha. I never had this before and had no idea what was going on. It felt, and looked like, like I drank something that burnt my entire mouth inside. Had trouble eating & drinking anything. but all is almost better now.

The drugs are making me nauseous. My blood pressure has been crazy low 80/54 the other day, making me really woozy. I HAVE to have sinus surgery in the next month or two. My sinuses are still really messed up (moderate-severe sinusitis and severely deviated septum). I saw my CT-scan and it does look pretty wicked! My sinuses are really stuffy and causing my ear to fill with fluid. Causing more off balance stuff. I swear! I am a danger to myself! haha (one thing, I haven’t yet lost my sense of humor!)

Oh, one good thing, my blood oxygen levels are going up. I no longer need oxygen to exercise. Doc is ordering a night time test to see how I do on room air while sleeping, so maybe I won’t have to be on o2 at night anymore. (although it helps me sleep sooooo much better!)

I should have just made a bullet pointed list! LOL Sorry if this is TMI, but I have only talked to doctors and nurses (and my parents) for the past few weeks… they get all the gory details!

darn…. that’s a lot! Work has been okay, although I wish I took off the past week, then I probably wouldn’t have to do this third week of IVs. But I am super in the hole with vacation time. They say that it is not a problem…. but what that means, I am scared to find out since they can’t have my first born. the gas station already took that from me.

I am feeling super overwhelmed. I sit here with not enough time in the day to do all I need to do to take care of myself. I am no longer afraid to ask my friends and family for help, but I am having a hard time figuring out what they CAN help with. Any suggestions out there?

With all that is going on, I am at least starting to feel better FINALLY. Getting my oxygen levels up has helped tremendously. Hope all is well in your neck of the woods!

I am quite overwhelmed with all there is to do now I am back home. Bills to pay, laundry to do, meds to take… I am still on three IV antibiotics, one is in a large syringe that I slowly push in over 10 minutes (or slower when it makes me nauseous). The other two are in these fancy little baby bottle thingies called Intermates. I hook up to it and it slowly infuses over 30 or 45 minutes (longer if I just got them out of the fridge). Totally portable. Totally awesome! I am also trying to squeeze in 3 physical respiratory treatments a day. Sleep?! What’s that?! This taking care of myself thing is keeping me really busy!

Today I went to work because I now owe my company vacation time. I didn’t really feel up to it since I am completely exhausted from my IV schedule and the side affects from the medicine, but I felt like I had no choice. I get 88 hours per year and between doctors appointments and sick days, I blow through that very fast. Rarely do I get a REAL vacation day. When I get sick, even a simple cold, I get REALLY sick and that means I am out more than my average coworker. I always feel really guilty when I miss work. I wish I could be there, but sometime my health just won’t let me.

Also today my home nurse came to change my bandage on my PICC line and draw some blood. She took my blood pressure and her eyes about bugged out. 80/56. Very low. I have been feeling really woozy recently and now I know why! I assumed it was a side affect from all the drugs I am taking but maybe I am wrong. I hustled home right after work and hooked my line up to a bag of fluids. I’ll be stuck on the sofa for a few hours while it infuses old school drip style.

Did I mention that I am exhausted? Oh goodness. Between the low blood pressure, blood sugars going wacky, med side affects and the schedule, I never thought I would long to be back in the hospital where I would have a nurse come in and hook my meds up for me giving me a few extra precious hours of much needed sleep. Darn that desire for freedom! I take my IVs at 6am, 2pm and 10pm. It takes anywhere from an hour to two to infuse… I celebrate the days I get 7 hours of sleep!

Other than all that, I am feeling a bit better. Still having random coughing spams, but much less than I used to. Things are definitely on an upswing! I can’t wait to get these meds finished so I can get one good night sleep!

Right now lil Brodie is curled up on the sofa next to me along with the new addition to the house, my oxygen tubing. This is a first for me. After a short jaunt in the hospital around the elevators with my nurse pushing a pulse-ox machine (measures the level of oxygen saturation in my blood) we found my oxygen levels drop even with just a little exercise. Knowing that, we figure my oxygen levels most likely drop during sleep when my breathing is more relaxed and shallow. So this means I now have an oxygen condenser, along with 50 ft of tubing to get tangled in, in my little home. For times I will be exercising outside the house, I have some small bottles to take with me.

It sucks that I am now to the point of needing to use extra oxygen. It is always a little difficult to accept the changes my CF forces upon my life. Although I am, as always, very thankful for the technology that lets it happen.

They really topped that today! I have a severe allergy to melons, all kinds, watermelon, honeydew, cantaloupe… this is written allll over my charts and even printed on my menus in plain bold language. So, guess what they brought me for my morning snack?! Watermelon! How nice. Thank goodness I have the brains not to eat it. I told the resident doc and my nurse because I believe this is a huge mistake, they agree. But guess what dietary brought me for my afternoon snack? Honeydew! As much as I remember I love the stuff I was about to throw it at somebody. Oh well. Again I thank my lucky stars I am smart enough not to eat it.

They really chapped my hide this evening when my dinner tray arrived…..

soup, salad,spaghetti, apple pie, water for hot tea and…

At least I am finding humor in it! They have screwed up every meal so far. Usually not giving me as much as I have ordered regardless of the “High Calorie” notes all over the place from my doctors. I don’t have an ounce to loose, so I am pissed. Oh well… I should be out of here tomorrow! I’ll be stuck on IVs for a while after that, but at least I will have a little (okay, a LOT) more freedom.

It is quite a surprise to be back on IVs so soon. Usually I only do them once a year, but this is my second time in three months. I am a little disappointed as I have stepped up my care at home, yet I end up worse off than I started. Apparently it is common, I guess it is because I started stirring stuff up in my lungs, pissed it off, and now it is retaliating.

The food sucks, I miss the time I was admitted on the Research wing with the personal chef and unlimited kitchen. Ahhh the good ol’ days. I asked for a low/no dairy diet since it plugs me up in all directions, but the hospital nutritionist told me to drink some warm water and I will feel better. What a laugh! I wanted to kick her. I have been trying my best to choose items that are dairy free, which is hard given the few choices I am given.

My nurses have all been super awesome always checking in to make sure I am comfortable and am doing ok.

The entire reason I chose to come into the hospital was to get four respiratory therapy treatments a day, done by professionals. Well, I have yet to experience that. So far I received one treatment the first day and slowly have worked up to three treatments today. Apparently the respiratory staff here is too busy to help me. And YES, I have raised holy hell about it. Wish me luck in getting four treatments tomorrow.

Over all, I think I turned a corner today. I got a lot of crud out of my lungs with my afternoon treatment using an IPV (I’ll post about that soon). I am feeling a bit clearer, although I am still quite short of breath when I walk around my room, even on 2 liters of oxygen. My oxygen stats are up a little, from 88% (room air) when I first came in to 96% tonight (but on oxygen). My weight is stable, but I was hoping I could gain a few pounds.

The doc is changing up my antibiotics in hopes to really kick these lung bugs in the butt. Right now I am on three, tobramyacin, aztreonam, and cephtaz. Doc is going to look at which drug caused my penicillin allergy and may switch one of those for merrem.

My blood glucose levels were really high when I first came in. Doc increased my 24-hour insulin dose and it seemed to work well since this morning I had a fasting level of 104, which is in a normal range. I am really happy about that.

Guess that is all for tonight… hope everyone is doing well!