Since my last round of IVs I have been short of breath and needing 3-4 neb treatments a day. Usually after IVs I have 2 weeks after where I am worse but then I get better. Unfortunately I didn't get better. So the week before the wedding I was praying I would make it through till we got back from the honeymoon and I could call my doctor and see what was up.
As you can see from the title I didn't make it through. What pushed me over the edge was the plane ride. I wore my O2 the whole time. However, as we were boarding the plane I was super tight and checked my sats and I was at 84% with a HR of 157! We boarded close to first so I sat down cranked on the O2 to 2L and sat back to relax. Once I was more stable and had normal numbers I turned it down to the 1L I was told to wear. About halfway through the plane ride I had to up it to 1.5L. I was checking every so often to make sure I was OK so when I saw I was hanging around 88-89% I knew I needed to up it. When we landed I took the O2 off and we deplaned. Walking off the plane set me back so far. I barely made it off when we had to stop. I checked my O2 again and it was 85% with my HR at 163! I needed O2! So I hooked up, we hung out at the terminal for a few minutes then off we went, me wearing O2 amid stares etc. Not a fun way to start the honeymoon.
Once we got to the hotel, we unpacked and settled in. I could feel a fever starting and I was at 100.1. So I took some Motrin and hoped it would go away. It did, but it took a while. I emailed my doctor during this time to see if she could get rx me some prednisone. But she wanted me to go to the ER to make sure I didn't have a pneumothorax or pulmonary embolism. So Monday we did our running around and headed to the ER around 3pm. I caused quite the stir! My O2 was obviously low - only 89% though - but enough for them to be surprised. I explained what was going on and they got me in as soon as they could - 3 hours waiting. Can't complain really.
They finally take me back and hook me up to heart monitors and blood pressure cuffs and O2 monitors. My blood pressure was through the roof! 136/85 which is super high for me. I usually run 105/65! RT comes in and gives me a neb treatment (finally it had been like 8 hours!), the doctor came in to talk to me and I gave him my CF docs info. So he got in touch with her and they came up with a game plan to treat me. X ray came in and I got a CT scan with contrast. My O2 was good until the CT scan. Resting I was at 99% since I was sucking down the nebs with O2. But once they did the CT scan, my numbers plummeted. I think the dye irritated my lungs. My blood pressure finally started to come down too, to 118/73 last time they checked.
this was right after they brought me back from CT scan. I had no O2 and hadn't moved in like 5 minutes. So basically resting. That's not normal for me. And you can see the resp rate at 30.
Nurse came in and hooked me up to 2L of O2 and this was 15 minutes later. Still not great but better. And the RR came down to 17. By the time I left I was at 94% thankfully. Hr hasn't gone down much yet either.
I wish I had gotten my PFTs done! I am curious what they were. I feel like I do when I take inhaled antibiotics and I know they knock me into the low 20s. And that was when my FEV1 was up in the high 40s so who knows what it would be being in the high 30s, low 40s to begin with!
I was given a bag of IV Cipro, an rx for 500mgs twice a day, and 20mgs prednisone twice a day. We picked them up today since we didn't get out until after 10pm and all pharmacies (hospital and CVS) were closed already. I was told to rest and take the meds. They knew it was my honeymoon so they said relax as much as I can. They suggested a wheelchair for Disney and we agree!
Today....well today I am feeling better. The tightness isn't as bad and my O2 is slightly better. I am hanging around 91% but my HR is still high. I have had one prednisone dose so far so hopefully by tomorrow they will kick in. We didn't do Disney today but plan on it tomorrow. We just relaxed by the pool
So that has been the start of our honeymoon! We think all the bad stuff has happened so the rest will be fabulous!!!