The latest in the Lovely Link for Lianna's Lungs

Okayyyyyyy so anyway...I added these pictures so you all could get a good look at what I see all the time. LOL Recently...wearing the oxygen has been quite a bit MORE helpful in the "fight against suffocation". A lot of things are improving as far as which assists are actually assisting, and not just mearly POSING as assistants...Okay, moving on...
So the Sputum culture I submitted this past week ended up being not that big of a deal. Initially, I was afraid of a couple if Gram positive bacteria...but ultimately it ended up being a few stray bugs that didn't amount to much. SO......There have been a few good things that have happened (imagine that...something GOOD...keep reading...it gets better)
1) I talked with my Pulmonologist. She is really great at resolving my concerns. I mean it helps that I am in the field of respiratory therapy, and know what I am dealing with, but she has that added element of informed comfort that is SUCH a relief. For any of you who knew my brain surgeon Candace Carlton, and what an amazing person she was, Dr. Carveth (my pulmonologist) is very much that same type of person. She says that although I have an atypical case with my lungs and the whole Kartagener's Syndrome, she thinks I would be a good candidate to be seen at her Cystic Fibrosis clinic. I have a lot of the same issues as the CF patients (ie, digestive, pulmonary, sinus, etc), and she thinks it would be helpful to be under the care of the "Team" at the CF clinic. This team consists of Nutritionists, Physical Therapists, Pharmacists, as well as other Physicians besides just MY Pulmonologist, so there are a lot of people contributing to a better maintenance solution. I am kind of scared about it, just because there are so many issues that have never been very closely addressed, and I am afraid they will unearth a bunch of stuff that I have just put off to the side as I try to get through my life...However, it has to be taken care of sometime. I am VERY glad for this opportunity. My first appointment with them is around May 19th. I will try to update as much as I can.
SO....this means, I am OFF the 3600mg. of antibiotic I have been on for the last FOREVER. I will be doing another sputum culture in 2 weeks to see what bugs have grown, if there are any. I am still doing all the breathing treaments and airway clearance stuff....I can't live without it doing that. I am just happy someone can help finally.
2) I had a weird little ultrasound of my eyes yesterday morning...My eyes always hurt...for various and assorted reasons. The most obvious being the brain surgeries, the hemmorhages, and the optic nerve damage...This, was to find out if I had swelling in the blood vessels behind my eyes. The information the doctor told me was that he didn't see anything very suspicious except for my sinuses....ohhhhhhhhhhhhh the dreaded sinuses...geez that is a bugger! I'm tellin' ya...this Kartagener's Syndrome has been the bane of my existence....and will continue to be as much until the great day of the resurrection I suppose. Anyway, I'm sure a full follow-up on that will be promptly expidited if the eye thing is anything more than just a sinus issue. So this case is going to be busted wide open....Let the detective work BEGIN! Details to follow....
3) In other, more uplifting news.....I was able to play the piano for a surprising length of time yesterday. For those of you who aren't aware, this "chronic curse" of illness leaves me feeling like what I can only describe as the worst part of the flu....all the time. You know, that part where you hurt all over, and you feel like you are about to puke at any given moment....you can't go outside because the sun BLINDS you, and the headache is just that....an ACHE. So...you can imagine, playing the piano is fingernails down the chalkboard of fun....HOWEVER...I sometimes HAVE to play...even if it hurts...What can I say...it is my sanctuary.
SOOOOOOOOOOOOOOO........That is the update...I will try to keep these posts current, as they are going to be the info epicenter for those who want to know what is going on.
As always, thanks for all the support, the love and concern, and all the prayers...Trust me, they do not go unnoticed, or unfelt. I appreciate it very very much.