Hi! My name is Jen, I am a 30 year old who has Cystic Fibrosis. I originally started this blog to keep track of my time on the double lung transplant list. Well after 2 LONG years and a lot of bumps in the road I finally received my transplant on December 2nd, 2010. Now I write about life post-tx and all that goes along with it! :)
Yesterday I had a check-up with my CF doctor. I went in feeling great thinking I was going to have a great check-up and then I had to do PFTs and I hate doing PFTs!!
I know PFTs are just one aspect of how well I am doing and that I shouldn't dwell on the numbers but I can't help it....it's what I do. My doctor did tell me that my right upper airway has a few more crackles than usual and that is probably why my FEV1 went down a little. So he wants me to do an extra breathing treatment everyday and also concentrate a little extra time pounding on my upper lobes when I am done with the vest.
On a good note from my appointment my weight is still really good. I think its the highest its ever been at 115.5!! WOO HOO! They keep asking me at my appts what I am doing different to keep the weight on and honestly I have know idea...all I know is I have had to buy several pairs of new jeans! :)
Well I hope everyone has a wonderful Christmas Eve and Christmas! I have to go to the grocery store soon to get all the ingredients to make a Red Velvet cake to take to my moms tomorrow! YUM!
Well its Sunday and its the end of a great weekend! The prednisone I got from my doctor did the trick and within a few days the pain was gone and I was able to enjoy the weekend and all the stuff we had to do!
Friday night, was my dads birthday but it was also my moms holiday party for her co-workers so they kind of combined the two parties and Danny and I went down to Naples and had a great time hanging out with everyone at my parents house. I made a yummy German Chocolate Cake (my dads favorite) and surprised him since he didn't know we were coming! :)
Danny and I in front of my mom's Christmas tree!
Saturday, Danny and I did a little last minute errands. I went and spent a butt load of money mailing Danny's grandma her Christmas presents out to Arizona. I kept waiting to send it because Danny's brother was going to get her something and throw it in our box and then he kept not doing it so finally I had to tell him he was on his own....hopefully the box gets to her by Christmas. If it doesn't I guess it wouldn't be the end of the world....but if it was up to me I would have had it shipped a week ago.
Saturday night some friends of ours had a Christmas party. I couldn't go to there party last year because I was sick so it was nice to be out and feeling great last night! The weather was beautiful...it was like 50 degrees last night. LOVE IT! Its not often I get to bust out the jacket. The only problem is I was wearing black flats so my feet were freezing by the time I finally pulled my crazy husband from the party at 2am!! :)
Danny and I and his awesome tuxedo shirt! :)
Me, my cousin Jm and Danny's brother Tony
Me and the hubby...
Today, I was up by 9 (that's right not getting home till 2:30am and then I had to do my vest too and I was still up early!) and then Danny and I went and met up with a childhood friend that I recently re-connected with on facebook. It just so happens that her mom lives in the same town as I do now (45min from where we grew up) and she comes up here to visit her all the time. So we met her over at her mom's house and we had lunch and a TON of christmas cookies! Its such a small world sometimes but it was nice seeing her and boy was it funny when she started pulling out the pictures from when we were like 10!! LOL
Anyway...I had a fabulous weekend and I hope everyone else did too. I am getting a little hungry though so I should try and figure out what is for dinner that is going to require the LEAST amount of energy cause honestly I am running on empty! :)
I woke up this morning at 6am...which never happens unless I have to get up to do something or go somewhere!
Anyway, so I woke up because I was in extreme pain (my joint pain is usually worse after I have been sleeping all night) short of breath and running a temperature. I got up to use the restroom and thats when I saw my reflection in the bathroom mirror and I noticed the red spots on my arms which where only a few last night when I went to bed had now multiplied to many all over from my elbow up on BOTH arms!
So after I used the bathroom, did a breathing treatment and took an Ibuprofen I laid back down shivering under the covers until I fell back asleep until about 9am.
Once I woke back up I called my doctors office and told them that I wasn't any better than last week and that my symptoms had even gotten worse and now I was getting SOB too. So the nurse called me back after she talked to the DR and they ended up calling me in 7 days of prednisone.
I have never used prednisone for my joint pain before but Piper had wrote a comment on my last post saying that is what she usually gets when she has similar pain/syptoms so I am hopeful that it will help.
**On a side note Piper had asked a question about my red spots so to answer her...no the spots are not tender to touch and dont really hurt at all. Some almost resemble bug bites (some are flat and some are bumpy like bites) but they are never itchy and if I accidently scratch my arm where they are thats when they hurt a little. Other than that they come and go with the joint pain and they are just there.**
Danny just pulled up so I will probably go downstairs and explain to him how to cook the pork tenderloin for dinner since I am still not able to move that well! Hopefully the prednisone that I just took will kick in soon and make me start feeling better. :)
The last few days I have had my "arthritis" type pain again. There isn't any rhyme or reason why I get it, I just wake up one day and im in pain.
It usually starts with my wrist, its a little achy like I might have slept on my arm wrong. Then it gradually gets worse moving up my arm to my shoulders and it almost always is accompanied with red spots on my arm and a low grade temp. Sometimes it even effects my knees.
I called my doctor a couple days ago when it first started to hurt more hoping that he could give me something better for the pain because my trusty 600mg Ibuprofen wasn't even touching it.
Danny was gonna pick the prescription up for me at his office if need be but instead my doctor decided to call in Toradol and its not helping. NOW im stuck at home on a Saturday in excruciating pain and I can't even do anything about it until Monday because even IF my doctor is on-call he wouldn't be able to call anything in over the phone.
IM miserable and all I want to do is feel better and not hurt anymore! :(
So my case manager tells me that they found "one more" pulse regulator but that it was in there Orlando office and was going to take a few days to get here. Fine whatever...
In the mean time my awesome mom made a few calls and her friend Heidi got me a loaner regulator until my company can get there acts together.
The problem now though is that the loaner one will NOT stop pulsing!! All it does is pulse even if I am not breathing in...and I thought the whole point of the pulse was to conserve the O2 when not inhaling!!?? Its very annoying and almost unbearable to wear.
Hopefully my permanent replacement will come soon.
So everyone knows I am on O2 all the time. When I am at home I have a concentrator that I use and then for going up and down the stairs or to leave my house I have little "D" tanks with a pulse regulator on them to make them last longer.
Well....last night I went down stairs at 5:00pm like usual to start dinner for when Danny got home from work and I set my tank on the kitchen counter like I always do. I was just getting things out of the fridge when the phone rang so I went to reach for it and it was just out of my reach so I stretched my arm a little to get it and when I did my tank went crashing to the floor and now my regulator is broken!! :(
I called the oxygen company right away because I was so upset and the guy who is my case manager called me back and basically said I had the ONLY pulse regulator in the whole company and he doesn't know if he can get another one. WTH....how can I have the only one?? and even if I did have the only one isn't it his job to order me a new one if the one I have breaks? I mean he is my oxygen supply company!!
For now I have a regular regulator on my tank so at least I can still go down stairs to eat and take Brodie out but it wastes so much oxygen using that kind I hate it.
The guy is supposed to be calling me back today....hopefully with good news.
I hope everyone had a great Thanksgiving...I know I did! I made 3 pies apple, pumpkin and english toffee pecan! YUM! I also made a green bean casserole. My family came up and we all went to our good friends Curt and Karen's house. It was such a nice day with lots of food and fun games (the girls kicked butt in pictionary!!)
Here are a few photos of our day!
my pretty pecan and apple pie!
my pumpkin pie
me, my "little" brothers Jordan and Josh and my little sister Jessica
me and my dad
me and Danny! :)
me and Jessie
my mom and Jessie
It was SO nice to be home for Thanksgiving and to feel good enough to participate in the cooking. My mom and I also went out shopping on Black Friday (not 5 am) and got some nice things.
Danny had his birthday party Saturday night so I will post some pictures from that later. I had a full weekend but it was great! :)