Sunday, November 17, 2013

Stanford trip 11.13


  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 :)

Monday, November 4, 2013

It's been way to long since I last posted!

 Heeeeyyyy everyone, 

 I know that I owe you all a big update and explanation for my lack of postings and I'm happy to say that I'm working on it! But for now just something short and sweet. 

  I just got readmitted to the hospital after being out for THREE very long weeks..yes that was sarcastic! I'm just sick again and not doing so well. But lately my pattern for coming in has been every two weeks for two weeks. This time however, I will only be here for about a week and then finishing at home because I have a trip to Stanford coming up on November 13th, that I leave for on the 12th. But since I'm not staying in california for a visit with my bestie like I normally do, I will be on IV when I go down. And as an added bonus my lovely little sister Ashley will be coming with my mom and I for this trip!! 

  Last time I was in here they found a hole in my heart. I'm told that it's fairly common in people with pulmonary issues and that I could have had it a year ago but they weren't aware until now seeing as how they didn't do the right test until now. There's nothing they can do about it right now, especially since it's not an issue right now. It's just something that they're gonna watch and it's something Stanford likes to know about. When I get my new lungs, I guess a lot of the time the new lungs will squish it closed. Or if the surgeon thinks it's a problem they will but a stitch or two in it to close it up. In my honest opinion, I think it's from a broken heart, so allow me to say thanks to my ex who broke my heart...literally. 

 Right now my pft's at best are 18% and I'm on 3 litters of oxygen 24/7. I can barely do anything, right now something as simple as talking is hard for me to do because I get so winded. I will try to post throughout my hospital stay about whats going on and everything. As well as working on my big update! Two dry runs (yes, two, I'll explain in my big update) and 7 months on the list and I'm still waiting for new lungs. 

  I hope and pray that my call comes soon. I am so ready for it. I'm ready to be done with this part of my life and to just move on. My goal is to be able to celebrate my 21st birthday (in march) with new lungs. 
Prayers and good thoughts are always welcome and VERY appreciated! Thank you for reading. 

P.S I have also created a Go-Fund-Me account. Please share and/or donate! Anything and everything is appreciated!

-Amanda :)