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It Aint easy being wheezy

It Aint easy being wheezy

I'm still in the clinker, not much has changed. Normally I should be feeling better by now, maybe only now do I feel the slightest improvement, it's day eleven. Disappointment, frustration and discouragement are the feelings I have. It's beginning to be a trend that the antibiotics don't work well for me anymore, starting about a year ago. This week I repeated PFTs to see if there has been any improvement in my lung function. Sadly they actually went down a percent, so now my FEV1 is 18%. I had a feeling it wasn't going to improve from 19% because I still felt fairly crumby but I didn't think that I was going to be lower. Friday they decided to change up my antibiotic "cocktail" (sir, I would like a gin and tonic and then a moscow mule, k thanks). I was on Vanco, Tobra and Zosyn, and now they changed it to Colistin, and Aztreonam and keeping the Vanco. They'll still be giving me IV Benadryl before every vanco (sleepy sleeps). Actually I don't zombie out every time they inject me with it. Something else that they switched over earlier last week was from oral prednisone to IV prednisone called solu-medrol. It's used to help with inflammation as well as my wheezy tight lungs, it aint easy being wheezy. 

 PFTs

PFTs

Other than that fun stuff, my eleven days here have been a slight struggle. I've needed my Duonebs a lot sooner than every 4 hours. There have been several nights and early early mornings that I have urgently called for a respiratory therapist to come and bring me a neb, I hate that I can't just do nebs myself in here! I get very tight and short of breath, it creeps and then within a few minutes it's pretty aggressive. I've become a wheezy wheezer after most of my nebs, it eventually clears up. Good thing I'm not running around on public transportation sounding like that standing in close proximity to people, but then again that could be a benefit. Strangers would not want me standing/sitting near them, in the result I scare people away, which equals way more room for me!  I also can't last long without o2, like when I take it off to wash my face and such. Still on two liters, sometimes more. 

A few random things that have gone on while being here. First, are those lovely red splotches that I get with the Vanco. They were worse this time around, as well as two new areas that they popped up in. Usually it's on both of the lower end of my biceps (twinsie arms). Now there is a third on my right forearm and on the back of my left thigh. None of my docs or nurses have ever seen this before. They feel hot, raw and tender. Like a burn, I guess I've been describing them as burns. Especially since after it subsided the skin peels like a sunburn-ish, gross I know. So, these 'burns" have improved I believe because they slowed the rate way down. Instead of the infusion going on for 3 hours at a rate of 250ml I believe, they had it slowed down to about 40ml for about 6 hours or maybe longer.  Something that in the last few days that started to happen is that my IV line has become quite sluggish and becoming difficult to flush. They are saying that this could be because the Vanco is apparently thick like a syrupy consistency and so it's beginning to clog up the line because its been going in so slow.... gah! I cant win! So in order to possibly fix this they ordered a TPA cath flow, which is when they insert TPA(clot buster) into the line and let it sit there for about one to two hours and then is taken out. Doing this should help clear any obstructions. Well this did not work out too well today, had it done twice. Tomorrow they will discuss whether it would help to try more or get some imaging done to see if they can see what's causing the issue. Clogged lines are not fun and can lead to surgery. I've had a clogged line before and needed a new port put in...I was so bummed! happened right around my 21st birthday. 

 Burnin

Burnin

The third random thing happened on Tuesday last week. I got up from a slight nap and felt like a wheezy rumble gurgling feeling in my lungs. I've had this feeling several times before so I knew exactly what was going to happen. I coughed up straight blood, not phlegm mixed with blood, not streaky, but just blood. And then again I needed to get out what felt like fluid like substance. It wasn't really that I needed to cough but it was that blood just kept needing to come out and quite quickly. I usually don't worry too much when I cough up blood, but this time it felt different. It just kept coming out and in a matter of minutes a lot came out. I'm not a panicer but I felt the the need to call a nurse, especially because it had become difficult to breathe, so they bumped up my o2 to five liters, until I was okay and could come back down to two. The blood coming out eventually started to become mixed with my regular phlegm and then streaky phlegm, which has been normal for me since before I came to the hospital.

 Lovely just lovely

Lovely just lovely

A short while after that subsided, I started to get a sharp pain on the lower right side of my chest when I would inhale. Of course this would start while I am taping up my IV to take a damn shower! Did I stop to tell a nurse,  ha of course I didn't. Getting a shower in during the day can be tricky and I was NOT about to lose my chance because I was finally unhooked! The chest pain eventually got better later but I did inform my nurse, and then talked to the Docs. They wanted me to go down for a CT scan just to see if anything was going on. The CT scan did show that my right side had a lot more going on, they said it looked more inflamed and more full of mucus plugs and what nots.  Actually, they look pearly white in X-rays, as well as they sound crackly. I would have to describe the noises as pop rocks when I inhale and exhale. Yes, I stuff pop rocks in my lungs.... :-)  

Oh and to end on a floofy note! I finally met a therapy dog in here. They've asked me in the beginning of all my admissions whether I would like a visit from a therapy dog and obviously I said heck yes! This is the first time that I got to see one! Her name was Abby and she was such a soft floof! I wanted her to come canoodle but they aren't allowed to enter our rooms, I could only pet her at my door. This is because of germ control between all the CFers here. 

My hopes are to be able to go home this Wednesday, we shall see....

 

 

 

 Abby the floof

Abby the floof

 Misty mountain view

Misty mountain view

 Beautiful flowers mother and father dearest sent me last week! they smell amazing! :)

Beautiful flowers mother and father dearest sent me last week! they smell amazing! :)

The Maine event

The Maine event

Think clink

Think clink