Just this past year i have been in the hospital more then i have been out. I did my longest stay ever this year as well. i was here for 58 straight days from February thru April. I am becoming very antibiotic resistant from being in and out so much and on antibiotics for so long all the time. I was just here in the end of June for about a week, i went home the day after fourth of july and was on home IVs for 2 weeks. During that course i knew i wasnt getting any better but i wanted to be out and at home so bad i continued on and pushed it all off until my clinic appt. yesterday. I am having fevers, cough that is unproductive because everything is so thick and stuck, blood in the sputum, pain in the lungs, and every joint, muscle and bone in my body aches. My PFT's were down again. Got a chest x-ray and it looks horrible. Sputum culture shows that i have grown out not only 1 "bug" but 3. :-( MRSA, Pseudonomas and stenotrophomonas. So they have loaded me up on IV antibiotics once again. I am on Vancomycin, Tobramycin and Cefapeam. This will be a 2 week course and i am hoping at the end i will be back up to baseline and able to go home. The nurses here are amazing so that does help the days go by with some sort of ease. i just cant wait until its that time and i can finally start the process and get some new lungs. All i want is to laugh without a coughing fit after, breathe without it hurting and to just have a some what normal life. Im tired of the medicines controlling my life, the dr visits and hospital stays..
Jessica I am on the CF board and followed your link here. I just wanted to let you know you are in my thoughts and prayers as well as your daughter. What a strong fighter you are and so beautiful! If you ever need to talk I know we dont know each other but im a great listener :) hang in there!
ReplyDeleteI feel your pain Jessica. I am so sick of having to govern my entire social/school/work schedule around my clinic visits, hospital stays, and other arising factors of this delightful illness. I cannot gain weight despite adding ensure a week ago, I haven't GAINED anything, in fact I am still LOSING! Not good. I also want new lungs but am not sick enough to get them. I love you girl, stay strong...keeping you in my prayers and hoping to God that he finds us a cure soon!
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