Month: June 2014

Doctors Appointment update

Yesterday I had a Doctors appointment at the University of Michigan in Ann Arbor. I am kind of sad to report that it didn’t go as well as I had hoped it would. I have been feeling really good since I’ve gotten out of the hospital and i had really anticipated my PFT scores being higher, but all in all nothing really changed. The doctor did take me off IV antibiotics though after being not hem for four weeks he said if I was going to see an improvement it would be there. My weight hasn’t increased at all, and my lugs still have a lot of crackles but the doctor seemed optimistic that getting back into the mode of running would help both of those things out a lot. 

My PFT was at 32% and I am still pretty upset about it. I really thought it was going to be at least in the mid 30’s but it just didn’t work out. 
I have to be honest I am pretty upset and disappointed. I really did everything the doctor wanted me to and I’m just not seeing positive results anymore. I am just not sure what I can do now to get the improvements that I want, and I am beginning to think that they just won’t happen at all.

Cystic Fibrosis is degenerative so I know that it is only going to get worse and at some point I will stop getting better but it is pretty fooling when you feel better but the tests say you aren’t. I just can’t help but question how long it will be before I don’t feel better either. All I can do now is just try to keep a positive outlook.

Wish me luck!

There is no place like home!

After spending a week in the hospital I was finally able to go home yesterday afternoon. The best news that the doctors didn’t find and sign of outside infection. My doctor was really concerned after the symptoms I showed that I might have a blood infection, especially since I have a history of one, but all my blood work came back clean! They even got my med port drawing blood again. The doctors were also able to change my medications around and get my pain under control. I still have another two week of IV antibiotics, but I can finally see some results.
I was able to make it home yesterday around 5:30, but my mom and dad took me out to dinner in order to celebrate my return home and to give me a proper birthday dinner. My birthday was Tuesday and my family was really generous and came to visit me in the hospital and they brought me outback steak house for dinner! It was nice though to be able to go out to dinner with my family and enjoy some real food.
This morning we all packed up and headed towards Lake Michigan to our summer vacation trailer by the Silver Lake sand dunes in Mears MI. We will be here for another couple days enjoying kicking some sand and cooking out!
For the best news of all though. This evening I went on my first walk in nearly a month! I walked about a half a mile with my dad and his dog. It was so great, I didn’t have to stop to take a break or anything! I haven’t been able to walk like that in a long time! I am so excited to be able to get back on track in my training, and to keep progressing towards my marathon in a year.
Wish me luck!

I was getting restless in the hospital after a few days so I decided to create a video. I don’t make video’s very often, i get very nervous and shy trying to speak in front of a camera, but here we go! My own homemade hospital tag.

Finally on the mend

It has been a long three days for me. The bad reaction I had to the IV antibiotics got really severe wednesday night, so I contacted my doctor again and he called me in for a last minute appointment yesterday afternoon. After running another PFT and looking over my symptoms and sputum test results he found that there had been no increase in my PFT’s and that I hadn’t really gotten any better over the past week. My most recent sputum test also showed that I have cultured staph in my lungs and given my history or lack of history with Staph the doctor was concerned that there might be more underlying problems that the medications were covering up. The last time I had a staph infection it ended up being in my medical chest port and then went into my blood, which is very dangerous and deadly. It didn’t only make my doctor nervous it made me nervous, so I was admitted into the University of Michigan hospital last night around 8pm.

I may be in the hospital, but with the help of the physical therapists I am back in training mode for the runs in the coming fall. I’m not doing anything drastic though, just a few laps around the floor but that is still more then I have been able to do in weeks. One of my other focuses in the hospital is on gaining weight. I’m currently about 20 lbs underweight, which my doctor isn’t to concerned with saying I will get it back when my health improves.

I am just taking baby steps to get back to a healthy enough place that I can focus on my future goals and ambitions, extending beyond just the runs in the fall.

Wish me luck!

Lazy days ahead

Well my symptoms have only gotten worse as of today. I woke up at 5am to do my morning IV antibiotics and I could hardly make it up the stairs in my house. My mom insists that I should stop all medication until I can speak with my doctor, but I don’t want to hinder the recovery of my lungs and out of everything that right now is most important to me. I can suck up the pain and live with it for another couple days until my doctor can get back to me if I have too. The pain has gotten bad not only in my knee’s but also in my shoulders. I can’t lift anything over 5 pounds without my arms giving out. I am trying to take it easy so I don’t cause any tissue or joint damage, especially when I don’t know what is actually going on.

Now I mentioned that last week I was at Disney World so I have pictures and the story to share! I spent 5 days there with my Dad and my youngest sister Shelby (10). We had a pretty good time although I do feel like I missed out on doing a lot, the big reason for that was because I was just to tired.

If you’re interested in reading about my Disney journey including where we ate and what parks we visited check out the Disney blog I run with my friends! http:www.thedisneydolls.wordpress.com  Not only will you find my adventure but if you’re interested in the Disney life you can find travel tips and all sorts of good information on there!

Now for some pictures! I will post some of my favorites, if you’re interested in seeing more pictures let me know. I will try to find some digital source to share them with you. I took over 300 so I don’t think they will all fit right here!
I hope you enjoy them:

 

Cinderella's castle

Cinderella’s castle

Shelby, Dad and I

Shelby, Dad and I

 

Port Orleans Riverside Ferry Dock
Port Orleans Riverside

Port Orleans Riverside

Excited Anna

Excited Anna

Disney Quest

Disney Quest

Shelby and Pooh Bear

Shelby and Pooh Bear

Dad and Shelby on Dumbo

Dad and Shelby on Dumbo

dragon