Well I have been IV free for a few weeks now and have tried to take full advantage of it. I got a ton of outside activities in , even rode the lawn tractor around a few times to cut the grass (with a mask on) and of course drove the M around as much as I could. Denise and I took the opportunity to go out for some fine dinning a few times and I even shared in the grocery shopping duties for a change (smile). I was down to visit the CF team at Morristown Memorial last Tuesday, my weight was good at 158, but my lung functions were surprisingly unchanged at an FEV1 of 24%.
It was a really nice break, but now it's no more CF maintenance plan and back to the real active CF infection world.
Saturday morning I was coughing up some blood (only a few table spoons) and was short of breath, but it passed. Yesterday morning I woke up early and very achy and not moving much air, so I got up and took some Advil and relaxed on the couch. I kind of laid around most of the day other than going to Lowe's with Denise for a quick trip and then more rest, at about 5:00 we went to Callahan's for a cookout, but I was not feeling very well and came home. At about 8:00 I took a shower and then proceeded to alternate between chills and sweats for the rest of the evening my temp was 100.1 when I checked it. I slept in this morning till after 10:00 and no fevers so far today, but have a dull ache in my upper right lung. Being the astute student of CF I am, this obviously all leads to the need for antibiotics (35 years of CF knowledge not gone to waste :)..I was diagnosed at 5).
So I fired a message off to Paula and the word came back that Dr Fiel was thinking back on IVs again already. I called back to try and stave off the Picc for a little and we agreed to try some Oral Zyvox first. So day 1 of Zyvox begins today.
On a very sad note last Friday we had to put our cat Phoebe down after 15 years or so with the family, sad sad day...I miss her everyday, and really notice it at times especially like now at breakfast....she always liked to have a little milk after my cereal
Hi James,
ReplyDeleteYou want to stay on top of those lung infections. I had just finished IV antibiotics 1 1/2 weeks before my transplant. It was perfert timing because I normally felt the strongest 1-2 weeks after I finished IVs. Then I would go downhill again. I really felt like I was the strongest I could of been when I got my transplant. I want that for you. I want to give you some advice. Keep active. I don't know what you do now but it will make a ton of difference in your recovery. I had been really sick all of January and most of February so I had slowed down with my exercise. I had just started back up 2 1/2 weeks before my transplant. I am so glad I did. I would crank up my O2 and get on the treadmill until I just too tired to think about walking back up the stairs. I hope you take this one piece of advice to heart. My thoughts are with you tonight.
Stephanie
Sorry to hear about Phoebe you know my feeling on the Lord I am not conceited enough to think there is only a heaven for humans.
ReplyDeleteDo what you need to do to stay on top of the game so when you get the call you'll be ready. I just have a knowing feeling that the next time I see ya you'll be past all this and feeling great.
It was great seeing ya driving the M around with the top down; say hi to the best wife in the world for me.
Love yas,
Uncle John
Hey James, sorry to hear that you're dealing with yet another active infection. Believe me, I know the cycle all too well. Here's hoping the Zyvox helps kick its butt and you can get back to cruising in the Spring weather with your awesome car ;)
ReplyDeleteYou're going to be coming up to Col Pres in the next couple of weeks, right? Definitely keep me posted as to how it goes!
Thank you all for the replies.
ReplyDeletePiper I have my apt with Col Pres on the 23rd...I can't wait. I wonder how much it will take to be multilisted there, and what if any differences in treatments they will establish. With Penn it's like they don't exist, except for the call (dry run).