Well, I made it past the Thanksgiving holiday and am now officially hanging out at ClubMed—my room with a view of Denver. Thanks to the stupid cold I caught at the beginning of the month, I am back on IV’s again which is the third time in the past 5 months—it’s just wrong.
I made my CF clinic appointment for the Monday after Thanksgiving since I knew if something needed to be done, I only had a two+ week opportunity to do it in. I have my son’s college graduation on the 18th and I wanted to be better for that. Waking up several times in the night with coughing spells and then seeing a mountain of Kleenex next to the bed was my first clue. Then blood sugars rising despite prednisone reduction was my second clue. But the charming third clue, being short of breath, forcing me to up my O2 about a week ago was the hardest one to ignore.
Sunday night I had almost convinced myself to call and cancel my appointment the next morning. Maybe if I just waited it out a little longer, things would be okay since I wasn’t feeling as bad as I usually do before admitting defeat. But then the “what if’s” started. What if it gets worse before graduation and then I can’t go? What if I wait and the bleeding starts up? Yadda, yadda, yadda. Then there was the I’ve-already-met-my-deductible-for-the-year factor to consider. Even if I managed to suck it up for the entire holiday season, I would be needing help in January for sure and then be starting all over again on a new deductible.
Then clarity struck about 2:30 a.m. when a coughing spaz in the bathroom was making me feel light-headed but I couldn’t seem to breathe well enough to leave and get to the concentrator to turn it up. By the time I could breathe better (relatively speaking) and could get to the kitchen to check my sats and up the O2, I was at 81% with a heart rate of 168. Not so fun but it definitely pushed me off the fence.
My pft numbers at clinic were 26% down from 31 just a few weeks ago. Yep, I’m toast. I did think that maybe I could skip the admission but Dr. S convinced me that going in for a few days to at least get my levels stabilized would be a good idea. Also since I had so recently been on drugs, she wanted to mix up my “cocktail” a bit and add a med that I had been desensitized to. If I were hospitalized then they could administer it at low doses and work up to the therapeutic level. Well, it made sense to me so here I am. So far the Tobramycin, Ceftaz, and Vancomycin are playing well together and the prednisone boost is opening me up. I'm all for hoping this will be enough, at least for a longer while.
Well hope its a short stay. I am just like you but I fianlly broke down and called my clinic. Like you my blood sugars spiked a few times, I did cough up blood in my phlegm one morning and been getting short of breath. They are putting me on some oral meds to see how it goes and if that doesnt nip it then I guess it will be IV time. Just as long as it doesnt end up a hopsital stay in the city over Christmas. Although tonight I dont feel too bad, my chest not that tight or achy. I suppose to be getting the meds tomorrow. So I take it you are on o2 all the time? I have my concentrator downstairs and my room is upstairs so when im not feeling good I gotta take it easy going up the stairs cause im on my low o2 setting for sleep. The thing us cfers go thru lol. Are you listed?
ReplyDeleteWow Sherri, sounds like you are ready to be put on a transplant list. That sounds like me before my transplant. In the hospital more than being at home or on ivs for 2-3 months straight. It's crazy. It's a tough decision, but I know I made the right one. I hope you get out soon! At least you got to enjoy your Thanksgiving. Now get better for Christmas!
ReplyDeleteAfter being away for a spell, I'm catching up on your blog. I definitely know more about your life with CF now than I did back in SF.
ReplyDeleteYou continue to amaze me!
good luck with this stay Sherri! Seems like everyones at clubmed
ReplyDeleteSorry to see you admitted again, but hopefully this will get you well enough to enjoy Josh's graduation and Christmas. (((HUGS)))
ReplyDeleteLove you TONS Auntie! Hope you get up and about soon, we sure missed you for turkey day but your cake pop turkeys look awesome :) Love all of you - let us know more about Josh's graduation so we can show our support, so awesome!
ReplyDeleteRisa