Ha ha!!! Sleepless in NY

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Okay, I am in a rare sense of humor mode LOL!! It is nearly 2 am ET...I should be sleeping, I know I should but I sometimes suffer from insomnia despite being very tired. My eyes are even reddened and dry, I have also taken a hefty dose of Benedryl to help me drift off but alas, no visit from sand man yet. So what is a woman to do during times like this? Yep...scour the world wide web for things to entertain me. It seems that just about anything is making me laugh....things that I find hysterical on YouTube right now will probably elicit a "huh? what was I thinking?" after a good, solid sleep. So...until my brain decides to shut down, I will add a bit more to my blog which I have sadly neglected for a few weeks.

I left off writing about my first encounter with the big, bad cepacia. To be more fancy and to give it its proper name: Burkholderia cepacia. It exists everywhere...in dirt, in water but it is one tough bug as I described in my earlier blog. No amount of IV's ever gets rid of it....there is a false sense of elation when the repeat culture "looks" clean, but to my dismay, it invariably multiplies even in the most hostile and harsh conditions thus knocking me down a few pegs. "Normal" people do not get infected with this bacteria, the right conditions have to exist for it to flourish and thrive.

This bacteria absolutely loves me for a few reasons. One...I live on a ventilator that has warmed, humidified air in its circuit. Of course, having a tracheotomy also makes it very easy for any bacteria, not just cepacia, to make their way into my lungs. The human body is amazing in that it has some really cool built in defenses against pathogens. Breathing through the mouth or nose not only serves as a natural humidifier and warmer, bacteria and other cooties are trapped in the mucous as well. This makes it harder for pathogens to make it directly to the lungs I would think. Another reason that cepacia is particularly fond of me is because of my innately thick mucous. I have atypical CF (cystic fibrosis) which explains the viscous mucous. Pathogens easily get enveloped, add darkness and a moist and warm environment to boot and you have a petri dish. I not only grow cepacia, I also grow out Pseudomonas aeruginosa, staph aureus as well as Stenotrophomonas maltophilia or steno for short.

I do many things to try and minimize infections or exacerbations that typically land me in the hospital. For the pseudo, I nebulize TOBI, or tobramycin every other month on 28 day cycles twice a day. I also take Zithromax 500 mg on Mon, Wed and Fridays. This helps the inflammatory process mostly, but it certainly does help keep some of those buggers at bay I have found. I am also very conscientious about doing daily chest physiotherapy using a machine called the Vest. It essentially "pounds" the secretions loose in my chest so that I can bring them up easier. I do this twice a day on varying settings. Some days it is tougher to endure the higher settings as my cartilage between my ribs as well as the muscles themselves are tender, when it gets to the point where I am tensing up I turn the frequency down. Some days I have to cut the session short because of the discomfort. This is very frustrating, chronic pain is frustrating. Some days it is easier to manage, but on others, it sometimes seems that no matter what I do, what position change I attempt, the pain persists or even becomes greater. Because of my chronic pain issues, I am on Fentanyl patches along with Percocet for breakthrough pain. This has helped me tremendously....ahh I digress. I will blog about chronic pain in another entry, definitely blogworthy if you ask me. Now...back to the regularly scheduled program on maintenance...

Hmm..let's see. I also nebulize pulmozyme which acts on the DNA of the mucous and actually breaks it down, liquifying it so that I can cough it up easier. I will honestly tell you that this is the draino of all mucolytics.....After nebbing that stuf, I gurgle for hours bringing up goo left and right (I know..a bit graphic, but hey, how does one describe horking?) The way I look at it , the less sticky stuff in my lungs, the better because bacteria don't have a chance to latch on and make a home as easily. I take other inhalers to help keep my airways open ( I also have asthma, wheezing is my life!) and decrease the inflammation as well (steroid based inhaler such as Flovent). Last but of course not the very least, Singulair tablets.

All of this, just for my lungs...I don't even want to get into what my entire system entails. It seems that there is a drug for just about every bodily system...One med opens this, another med closes that...a third med is added to reduce the side effects from med one and med two and so forth...I am officially up to over 20 pills a day and that does not include my digestive enzymes that I take with each meal and snack. People are always amazed that I can gulp down my entire bucket of pills in just one swallow. My sister cringes the most...she is the type who would probably choke on a teeny pill like baby aspirin. An attempt to swallow my mother lode would probably earn her the Heimlich maneuver!

Okay...so now I am getting a bit slap happy and should quit now. I promise to add more soon! GB hugs, Jenn :)