ohhh what a day it has been. i had no idea when i woke up this morning what a day it was going to be or i might have just stayed home. to begin mom and i left the house this morning promptly at 7. right on time. we were told to be in line before 8 because they were starting to give them at 8. mom dropped me off at the door and i was in there at 10 till...there were a few people sitting around in the hall and i walked to the pharmacy door and it said Hours of Operation- 8:30-5:00...huh? i was told 8!! i turned around and the few people sitting there said "yeah we were told 8 also...but apparently it's 8:30"...so we sat in the hall and talked until 8:30...the doors were open, but the nurse wasn't set up yet because they wouldn't let her in until they opened. so we didnt even get our shots until a little after 9!!! while we sat and waited though we talked to dannette who talked to the Drs and they decided to start me on IVs yet again. however, this time they are doing a new antibiotic that i've never used before. they explained to mom that instead of the normal small "balls" of drugs, it will be in an IV bag that will need to be hung from an IV pole {OH lucky for us we already have one of those!} these IV bags aren't premixed either, so mom will have to mix the drugs before each infusion. talk about stressful. so, after that mom and i picked dad up and drove to get our hair done. by this time, im feeling awful. im weak, cant breathe, and am just plain tired. while mom is getting her hair cut my blood sugar drops. perfect timing. well, luckily we get our hair done at the sweetest ladies house and she had something for me to drink. it was so nice to be able to lay down at her house since i wasn't feeling well. {and she has the sweetest puppy} getting my hair done made me feel a little bit better- and it certainly felt great! we got home and mom had to drive back down town to pick up my oxygen tanks because they couldn't deliver it on such late notice. mom got home from that and started the new antibiotic. since it was a new system that we weren't used to getting started on it was kinda stressful, and on top of that it wasn't running fast enough and my port-a-cath clotted off. talk about 2 stressed out, irritable, not happy, girls. since it was 5 we couldn't go to the clinic to get the clot busted and i certainly couldn't go to the ER. so we did a lot of praying {and a little bickering} and she changed out my cath and the clot was removed with the first needle! praise the Lord, we didn't have to go downtown, again. at last, things have seemed to slow down and we are both resting on the couches. hopefully the drama is over.
today was stressful. and i am tired. i cannot wait to go to bed tonight.
we still haven't heard from transplant. i imagine it will be tomorrow or wednesday.
on another note. please keep janie's aunt's father-in-law {and his wife of three weeks} in your prayers. they were involved in a car crash saturday, and are in the hospital in chattanooga. he is in very critical, but stable condition. she is recovering and doing a little better.
tomorrow i plan to sit around the house and get better! and wait on the phone call.
until then,
leigh allyn
Prayers:
~this new antibiotic does the trick and i can get a head of the game.
~insurance approves transplant
~aaron and his family and his job search
~tammys father-in-law, and family
~stellan
4 years ago
Hi Leigh,
ReplyDeleteI am new to reading your blog. I am 29 and have CF, also waiting to get listed. I am not sure what new abx you are on but they should still be able to give you the "balls" and you can add the medicine to that. I had to push my home health company to do it, but it does not have to come in a gravity bag just because it cannot be premixed. They just can give you the balls with just saline and then you put some saline in the abx vial, mix it up, draw that out and put it into the ball. I refuse to do gravity bags since I do IV's during my lunchtime at work. Just a thought so you don't have to be stuck at home!