Friday, October 31, 2008

Clinic appt.

Wednesday I had a check up appointment at Akron.The PFT showed FEV1 at 43% and 1.02 liters.Not a big improvement,but I will take it.Also,my culture showed a bit of aspergillus and another fungus (I forget what it was called).She said it's very common with CF ...I just wonder how I get this stuff!!So now I'm on an antifungal med.They did another culture yesterday.She also thought that my laryngitis was caused by the TOBI,although I did have a bit of a sore throat too,which probably made it worse.I was still squeaking yesterday,but today,I'm finally able to talk again,still not quite back to usual,but close!I go back next Wed.when they will decide if the picc will be pulled or if I'll need to keep doing the IV's for a third week.The tobra IV is now changed to every 36 hours instead of 24.I have to keep closer track of that schedule.I can practically do the IV thing while I'm asleep,I'm so used to it.At 5:55 in the morning or midnight,I AM practically doing it in my sleep!

My dad is coming home from the hospital today(I think).He had a partial knee replacement on Tuesday.He seems to be doing pretty well.My sister will stay overnight to help him for 3-4 days.I wish I could help more...Please pray for him to heal well and for my lung function to improve!Thanks.

1 comment:

Aspiemom said...

I'm so glad you found my site, so that I could find yours!

I hated using Tobi. I would lose my voice entirely for about 10 days and would feel awful, like I had bronchitis. I finally convinced the CF dr at Vanderbilt to let me stop taking it. Yeah! Also, I stopped the Pulmozyme. Johns Hopkins had said it wasn't helping me, but Vandy had persisted until recently.

I hope you get your PICC out soon. What meds are you doing? I always get merem and tobramycin. You don't get much sleep with having to keep up the IV schedule.

I need meds right now - I haven't been on IV's for a year and I can really tell I need them. I can feel the pseudomonis just filling up my body. You know how you can just feel when things are wrong? I have to wait until my husband's new ins. kicks in in 2 mos. We're still paying off last Fall's infusion bill!

My PFT's fluctuate between 33%-45%, mostly in the 30's. I'm on O2 at night and when walking much because I desatted to 87 after a couple min. of walking.

Do you have CFRD?