Last week I had an appointment with Stanford in which case I had to leave the hospital in order to go. Something that I quickly learned I shouldn't have done. The appointment itself went really well, which is a first! And I met a new CF friend while I was there her name is Caleigh! :) The day I left the hospital (Monday) I felt great, I was ready to tackle Stanford and to see my best friend!!! And of course I went home on IVs. But the day we flew down there (Tuesday) was a completely different story. I was nauseous, cranky, had a bad headache and just overall feeling like crap. And this lasted both days I was down in california, each day worse than the next. Have you ever had to fly while being sick? Pretty much the worst thing in the world. I typically really enjoy flying but this was such a horrible experience. I sat and cried in the airport, on the plane, pretty much anywhere and everywhere I was. Since I was so incredibly nauseous I couldn't even tolerate my antibiotics and decided not to even bother doing them while I was gone, which was only over night. I hadn't gotten any sleep the previous two nights so that wasn't helping my cause any. It was just a miserable, miserable time. Even the doctors down at Stanford asked me why I was there seeing them since I was still clearly pretty sick. My answer; well my Kaiser doctors told I had to come. Come to find out, I didn't have to go... Thank you Kaiser doctors.
Sitting in the airport waiting for our flight home I had my mom call my doctors at Kaiser to ask them to just readmit me since I was still feeling so shitty. And they said I had a few options; 1. Be seen the next day at clinic. 2. Go to the ER when I land. Or 3. just stop IV altogether. In the past, after I'm on IVs for a certain period of time my body starts to kind of reject them and they actually start making me even more sick. So I decided that I would just go into clinic the next day to see my doctor. After all, I had already start to feel better since not doing my IVs for a day and a half. When I went in to see my doctor I did, we decided that what we would do would be based on what my PFTs (pulmonary function test) were. And surprisingly they were 21%!!!!! Which is the highest they've been since August!! So I came off IVs but we decided that a bag of fluids to maybe help filter out the antibiotics would be helpful before they took out my IV, so we did. And I honestly think it did help somewhat. And she wanted a urine sample to see if I had any ketones in it. Which appears when you haven't been eating for a few days and your body starts to eat the reserve your body stores and your muscles. It came back negative! But on the not so good side my weight is down quite a bit, I'm at 97 pounds :( now that I'm feeling better and not so nauseous I'm eating better and doing my night feeds! Hopefully I'll be able to put that weight back on!!!!
Just our typical "reunited with my best friend" picture <3
Two very important girls in my life!
My lovely seeeester!!!!
The last couple days I have felt 100x better than I had been! Which is SOOOO nice to be able to function like an actually human being! I'm sure there's more to tell but that's all I have for now. I'll update again in a little bit :) Thanks for reading, please like, share, and follow my blog :)
Good thoughts and prayers are always welcomed and appreciated!!!! <3
- Amanda :)