Friday, February 27, 2009


For as long as I can remember it was always jammed into my brain that we as "CFers" needed to have a high fat and high calorie diet. I was told to eat whatever I wanted and that I should eat a certain amount of calories a day to just maintain my weight...and thats not counting the make up eating I had to do if god for bid I got sick and lost 10 pounds!

It was SUCH a chore as a kid/teenager with the weight and eating battle. They always tried to push supplements on me (this was the DR before the DR I have now) Scandishake to be exact. I swear that stuff was going to be the end of me...I hated it! I bet you never in your life met a kid who was as creative as I was on how to get rid of a shake quickly before your parents or anyone else saw you dispose of it. The funniest part about all those years of arguing over me drinking my shakes or not is that when they finally left me alone about it all, I put the weight on by myself.

Then 2 years ago I was diagnosed with the CFRD and because I still need to keep my weight up I should continue the high fat and high calorie food and that I could continue to eat whatever I wanted and that if I needed insulin I would just cover myself with a shot.

Now that I have met all you wonderful bloggers I have become kind of confused on everything I thought I knew on having CF and eating because I know most of you eat a lot if not all of your food organic and don't eat a lot of crap and I wonder how you still keep your weight on.

I don't know I have just been really trying to get into a healthier way of thinking plus I know my blood sugars would be better if my diet was different. I am just not sure how to start so any advice would be great.

I feel silly even writing this but I know you all could help! :)

Thursday, February 26, 2009

5 days down...

I have only been in the joint 5 days and I am already becoming stir crazy! Part of that might be the Solu-Medrol but who knows??

Normally my DR tries to avoid steroids because of my CFRD. My chest was just SO tight when I was admitted PLUS the "episode" I had Sunday morning really gave him no other choice but to use them.

Whatever the reasons of not wanting to use them there is no denying that they help. Plus I have been eating EVERYTHING in sight!

Today was a good day though. I felt well enough to work which is good...a girl still needs to get paid! :) I also started the ball rolling in the right direction for me to get some sort of exercise while I am in here I CAN'T just sit here I will go crazy!! They don't have a pulmonary rehab at this hospital which I find strange but I think they are going to let me use the equipment in the cardiac rehab room. I really don't care what they call it as long as I can do something.

Danny and I did a few laps around the atrium tonight when he got here after work. So I think that's what I will do on the days I can't use the least its movement.

I also have a sleep study scheduled for Monday night. I told my doctor if he wanted me to give it a good college try with the bipap it needed to be on a home model (I hear they are WAY better than the hospitals) because I already know I hate the hospitals machine. To get this approved the sleep study is needed.

I am not to thrilled about the sleep study. I have had one done before and I honestly don't know how they expect anybody to sleep with all that CRAP attached to there entire body!

OK enough hospital talk.....on to American Idol!

Did everyone else like the next 3 added to the top 12?

I have to admit I like the guy who sang MJ's "Man in the Mirror" but then again I am a sucker for old school Michael Jackson!

The guy who sang last with the weird black hair, I know everyone thinks he is great there is just something about him I don't like and I haven't figured out what it is yet.

Did anybody else kind of feel bad for Norman Gentle?? lol

I know he really wanted to make it tonight but I feel they were basically making a joke of him the whole time. I mean they put him up last with weird hair cut dude...did you actually think he was going to be picked? NO...and I know he knew it too.

You could tell on his face as they were dragging it out telling him how horrific he was he knew he was going home. I guess its his own fault he should have come out and sang serious the funny was only going to get him so far.

Wednesday, February 25, 2009

My "CF" Info

I have been reading so many amazing CF stories the last couple of days and lets be honest I have nothing but time right now so I thought I would tell you mine!
  • My name is Jennifer
  • I just turned 27 on Feb. 3rd
  • I was diagnosed at 2 months old for failure to thrive
  • When I was a baby my mom would mix my digestive enzymes in banana baby food before I could this day I can't stand the sight or smell of a banana! Eventually, I just learned at a VERY young age how to swallow a pill.
  • At around the age of 8 or 9 I started doing daily breathing treatments and my mom did my CPT.
  • When I was in 3rd grade I had a make a wish. My wish was to meet Michael E. Knight who plays Tad Martin on "All My Children." It was a WONDERFUL experience and he is an amazing man who I kept in touch with for years after. (This kind of puts my love for soaps into started at an early age!) :)
  • My first hospitalization wasn't until I was in middle school. Other than that I had a completely "normal" childhood. Once I hit high school my hospital stays became once a year.
  • Other than the occasional sinus headache/pressure I have never had any serious issues with my sinuses that require surgery or any maintenance on them (knock on wood)
  • When I was younger not only did I take horseback riding lessons but I also took voice lessons for years and was an opening act for a dance troop performing at many places around FL.
  • When I was 20, I had to have my appendix removed. Because the doctor was worried about putting me under I was awake for the whole thing and was given an epidural for the procedure. It was NOT fun.
  • In 1999 I was told I should start thinking about tx. Back then the list was based on seniority not need and since my blood type is O negative, the idea was for me to go early and get on the list so by the time I would need it I would have moved up the list.
  • In my early 20's I started going for my "tune-ups" about every 6 months. It was around this time I warmed up to the idea of a medi-port and when I was 21 I finally had one put in. Its not in the usual spot, mine is on my left side under wear my bra strap is. When I am not accessed you would never know its there....I wouldn't have it any other way!
  • I have my AA in Accounting an have worked at a bank for 5 1/2 yrs. I plan on going back to school once I am healthy again! Oh yeah....I also went to school for phlebotomy before I went to school for accounting. I LOVED it but soon realized that if I wanted to work post-tx being around sick people wasn't necessarily a good idea.
  • I was diagnosed with CFRD 2 years ago. When I am not in the hospital all I need is 1 shot of Lantus a day (a 24hr insulin.) When I am sick and in the hospital/on steroids I need novolog to cover my meals too.
  • It was also 2 years ago when I started sleeping with oxygen at home.
  • When I was 20 my mom lobbied to change the law in FL. Because of her hard work and determination Medicaid in FL now pays for adult double lung transplants. Before her they did every other organ BUT lungs....oh yeah and did I mention the law is named after me! :)
  • I have 2 little brothers and a little sister. Nobody in my family (to our knowledge) has had CF but me.
  • In June 2007 I married the BEST man in the world. It was an awesome day and it just keeps getting better. He always makes me laugh even when I am trying to be mad at him! :)
  • With my health not getting any better and my FEV1 declining I was once again sent to Shands at the University of Florida. I re-did all my tx test to get a score and in May 2008 I was "activated" on the list. Since then I have been working from home and twice a week attend pulmonary rehab classes to get prepared for surgery.
There is SO much more but my brain is hurting just trying to remember all the dates/facts! I have had such a great life I could be here ALL night writing about it, but don't worry I won't. I have a wonderful support group of family and friends and can't wait till I can add to this list all my great tx milestones. Goodnight!!

More on bipap

Just to clarify a couple of things about the bipap. My doctor is suggesting I use the bipap machine ONLY to sleep with like people who have sleep apnea or snoring problems do. It in no way is because I can't breath on my own or because its being used instead of venting because I am absolutely NOT there! (Thank God)

To answer Sara's question: He says that sleeping with the bipap at night will be beneficial to me because I won't be working as hard to breath while asleep, which in turn will give me a better nights rest and I will wake up more rested and with more energy. I would also be burning less calories to breath. Oh yeah, and I asked him about the drying out part and not being able to cough things up and he said that it "could happen" but that its different with everyone.

There was a couple other things he said but honestly I can't remember because I am just trying to get past the mask part! I am probably not going to try it until either the weekend or next week once I am feeling better so I will keep you posted.

On a lighter weight is up and the liters of O2 I am on is down so I am headed in the right direction!! :)

Tuesday, February 24, 2009

I need some thoughts on a few things...

Have any of you ever used a bi-pap machine to sleep at night? If so, what did you think?

My doctor thinks that I will benefit from using one. The only BIG problem is I can't stand anything that covers my face. I feel claustrophobic and like I am suffocating (even if I know im not.) I have never liked this feeling, so much so that I can't even have covers over my face. I don't know how to get over it.

My sats are fine when I am wearing my O2 at night but my dr lists off like 6 other things that would improve by using the bi-pap. My uncle has one because he has sleep apnea and he hates it and doesn't wear it.

They already brought in just the mask part so they could find one that might fit me (and so I could try it myself to see if I can get used to it) and as soon as they placed it on my face I start tearing up and getting upset.

I don't know I really need to hear some suggestions. Thanks.

Monday, February 23, 2009

My doctors back!!

Well, my wonderful doctor was in this morning and after looking at my x-ray we have figured out why I couldn't breath yesterday morning.

I have not one but TWO mucous plugs in my left lung along with a crap load of mucous in the base of both lungs. He thinks that one of the plugs must have been moving yesterday morning and that's what was causing my shortness of breath.

Now usually when I am admitted to the hospital and I get my x-ray done it comes back unchanged. Meaning that even though I was sick and needing IV's not much had changed on the x-ray from previous ones.

But this x-ray came back with 2 plugs and a crap load of mucous and that's a little discouraging for me. I have been working SO hard at pulmonary rehab and really trying to move around more and be active even though I need my O2 because I know its beneficial and even with all that I get sick....and not just sick WORSE than I was before. I hate that.

Why am I even trying the pulmonary rehab if its not gonna help?? Anyway...that's just my little rant. I have a lot of work to do getting this crap out of my lungs. Wish me luck, I will need it.

Sunday, February 22, 2009

I need help!!

My doctor is not on call this weekend and I did not have a good morning. The nurses have certain "guidelines" they have to follow so they can only call the doctor who is covering for him.

I REALLY feel it is in my best interest that my doctor know what is going on. Am I stepping over the line if I call him myself??

Let me know what you would do....

Saturday, February 21, 2009

Guess where I am??

I didn't make it till Monday :(

I woke up this morning and it was just down hill from there. I was tight all day and I just couldn't get comfortable. Nothing I did made me feel better including my breathing treatments.

Around 1:00pm I started to call Danny who was working and he wasn't answering his phone (he was working on a roof today so its understandable he couldn't answer) but I was home alone and I started to get upset wondering what I was going to do...which didn't help the breathing any.

Then by some miracle my parents pull in my driveway. They were driving home from my brothers wrestling match and decided to stop in to say hello (remember they live an hour away from me.) I just started to cry when I saw my mom because I was SO happy to see her. I knew she would help me feel better.

So she called my docs answering service and paged the dr on call and told him I needed to be admitted today. She then she called Danny's brother (who he was working with) and told Danny I wasn't feeling good so he came home. While we were waiting for Danny my mom packed my bag for me so it was ready.

Needless to say, I am in the hospital. I hadn't ate or drank anything all day (when you can't breath you don't really have an appetite) but once I got settled here I felt hungry almost right away so I had a grilled cheese and some french fries.

I won't get to see my doctor till Monday but at least I am able to relax and breath a little easier. Its crazy how I can go from yesterday were I felt a little crappy to today feeling completely horrible. It really makes you thankful for the days where you feel even a little ok.

Friday, February 20, 2009


I didn't go to the doctors. Just getting up to get ready for the doctors was taking ALL of my energy and I didn't want to go to the doctors alone in case he wanted to admit me.

So I called the office and explained all my symptoms (tired, shortness of breath, low temp) and asked if it was ok to not come in and that I felt it might be time for IV's.

Originally I didn't think it was time to be admitted but when I got up to get ready to go to my appointment today and had ZERO energy to do anything I had to be honest and say to myself that it might be time for abx and I wanted to be pro-active and nip it in the bud before I get really sick instead of trying to prolong the inevitable (which sometimes I tend to do.)

So I called the office and spoke to his wonderful nurse Lucy and asked her if he was on call this weekend and of course he's not. So I asked if he would allow me to be admitted on Monday and he said yes so that's the plan. He want's me to wear my O2 all weekend and up my breathing treatments to every 4 hours until then.

I will make sure to let you all know how I feel through out the weekend and when I finally get settled at the hospital. I am just hoping this admission isn't as hectic as my last!!

I don't feel good,

The last few days I have not been feeling that great. Nothing to really pin point that is bothering me I just feel more tired and run down and an overwhelming feeling of just...blah.

Last night I even had a temp of 99.1 which I know isn't that big a deal but I don't usually get fevers unless I am in the hospital so even a low grade temp isn't good.

Luckily, I already had a doctors appt. scheduled for today for a check-up/port flush so I will tell Dr. Faverio what's going on and see what he recommends. I don't feel like I need to be admitted right now but I would hate to not go in now, get really sick and have to be admitted later and risk not being able to go see Wicked on March 28th!! I bought tickets back in December for this show and I am NOT going to miss it!! :)

When I went to pulmonary rehab yesterday it was A LOT harder than usual with my sats dropping quickly while on the treadmill which is usually the machine I do well on so I know something is up.

On a lighter note, does anybody like the new way American Idol is picking the top 12? I don't. Last year they grouped the guys and girls seperately and then we voted for the top 12 that way.

This year they are taking the 36 contestants and breaking them up into groups of 12, then each week the top 3 from each group of 12 (which makes 9) is in the final top 12 of the show. Then they bring back certain "wild card" contestants that got sent home and we pick 3 from that group (9+3) to get our final 12......whew, did anybody follow that?? :)

Anyway...last week I saw some people go home that I thought should have stayed so I am just hoping they get a wild card spot. Tatiana on the other hand I hope is being shipped back to Puerto Rico as we speak.....

Sunday, February 15, 2009

Valentines Day....Part Deux

Today we celebrated Valentine's Day, which thank goodness we were already planning on doing with the whole ER thing and my brother last night!

Danny got me some really pretty flowers and 2 really sweet cards (1 funny and 1 serious...he ALWAYS does that!) Tulips are my favorite flower so there was some of those along with roses and calla lilies.

Dinner at the Melting Pot was very good and I was so STUFFED it wasn't even funny! The only thing that wasn't so great was that by the end of the meal it was so warm in there from cooking the food I was getting a little over-heated. It was nice to get back in the car with the A/C on full blast!

The dessert was SO yummy....

It was a really goodnight and we had a lot of fun...I think the last couple years I have been in the hospital during Valentines day so it was nice to be able to go out and celebrate it instead of Danny bringing the dinner to me! :)

Saturday, February 14, 2009

Valentine's Day in the ER....

Don't worry for once it wasn't me!!! :)

Danny and I were out running some errands and around 3:30pm (est) my mom calls to tell me that my little brother Jordan (he is in 11th grade) had been hurt in a wrestling match and that his back/neck were hurt and his legs felt numb so they were taking him by ambulance to the hospital near by.

Now my parents live about an hour away from Danny and I and Jordan was at a high school about 30 minutes north of us. So we did a quick U-turn since we were already in the car and high tailed it to the hospital so he wasn't waiting with just his coach until my parents showed up.

When we got there he was worried about his back and in a lot of pain but he loosened up a little when I was cracking jokes to make him smile! I told him if he wanted to hang out with me all he had to do was call he didn't have to go and cause a scene. Plus he had on O2 so I told him he was trying to match me! :)

Once my parents got there they took him back for a x-ray and cat scan. It took FOREVER for them to come back to tell us the results and the crappy part was that they wouldn't take him of the board or take the neck brace off until they got the results back so they had him laying like that for hours! He was a trooper though and didn't really complain until the end when the neck brace started to bother him.

Luckily the test all came back fine for his back and neck they will just be sore for a week or so. Unfortunately he did break his nose so he will have 2 nice black eyes soon!

On a high note...he did win the match so he is going to the state championship which he may or may not be able to compete in depending on what the ENT dr says about his nose.

It's a real good thing we didn't have reservations for dinner until tomorrow night!! I would have been kind of disappointed because I am REALLY excited about the Melting Pot.

I hope everyone had a good day and is spending time with their Valentine....mine's playing video games as we speak!! :(


Tonight Danny and Curt wanted to see Friday the 13th. Karen and I both dislike scary movies so we did NOT want to go with them and instead went to see Confessions of a Shopaholic!

I have been waiting for this movie to come out ever since I first saw the previews.....I loved all the books and was so excited to see it.

All shopaholic fans I must warn you that they changed quite a bit from the book which is a little disappointing (because they are so good) but if you ignore that it isn't exactly like the book...then you will find that it is still a cute movie.

Check it out for yourself and then let me know what you think!! :)

Friday, February 13, 2009

Just Because...

Because I was bored last night and because my dog was being cute playing with his toy I tried to record him. He will play for HOURS just chasing the toy around the house and it is very amusing to watch! When we first got him he was scared of everything and didn't even know what playing with a toy was so I am so glad that he has come out of his little shell and is happy now! Enjoy....hopefully it works!! :)

Thursday, February 12, 2009

So Tired!!

I am SUPER tired today. Last night, I could not sleep for anything! I laid there tossing and turning and right when I think I might be falling a asleep...I get a charlie horse in my foot! This hardly ever happens to me usually my head hits the pillow and I am out for the whole night I just don't know what the deal was.

Of course I eventually did fall asleep but it seemed like it was 30 minutes before my alarm went off at 7 to get up and start getting ready for pulmonary rehab. I was sitting there like a zombie doing my morning meds I got dressed then laid back down for like 15 minutes and then finally I made myself get up and leave early just so I wouldn't try to go back to bed!

Its a good thing I did because when I got there the lady told me I had to go to registration in the front part of the hospital because there was a problem with my insurance. Since I was already tired I was NOT thrilled about having to get in my car again and drive to another building of the hospital but I did and it ended up not even being a problem it was actually a waste of 1/2 an hour!

Pulmonary rehab was kind of difficult for me today and I think its just because I had zero energy going into the class because I have been doing well. When I finished I came right home had lunch and then crashed on the bed for an hour. I felt better but I am still not 100% a good nights sleep tonight will help im sure.

I have sleeping pills but I usually only need help sleeping when I am in the hospital I don't usually like to take anything at by the time its so late that I think I need a sleeping pill its almost to late to take it because then I am afraid I won't wake up on time in the morning! Oh Well.

So does anybody have special plans for the weekend? I am not sure what all we are doing on Saturday, but I did make reservations for us at the Melting Pot for dinner Sunday night. We have never been there before so we are both looking forward to it! I am sure I will post some pictures. Till then~~TTYL :)

Sunday, February 8, 2009

Quiet Weekend

This weekend has been pretty relaxing. Its the first time in a long time we just hung out at home mostly and it was nice.

Friday morning I had my ultrasound, I called my doctors office Friday afternoon to see if they had the results and they didn't so I am going to call them tomorrow to try and get some answers. I kind of have a feeling he is gonna say its nothing but we will see. I have had problems with the right side of my stomach for years and I think most of my problems are from scar tissue from when I had to get my appendix out and if that is the case I don't think there is anything they can do for that.

Friday night Danny and I just had left overs for dinner (gotta love leftovers!) and rented Nick and Nora's Infinite Playlist. I wasn't sure if we would like it or not but it has Michael Cera in it who was in the movie Super Bad (we love this movie) and he is really funny so I took a chance and it ended up being a pretty good movie with some real funny parts.

Saturday, we spent most of the day at home. Danny spent most of the morning trying to figure out why we have a switch in our bedroom that makes NOTHING turn on or off. I told him to wait until my dad comes to fix it (he's an electrician and wired our whole house when we remodeled it, but I think my little brother who just started working with my dad was the one doing those particular switches) but he insisted he could figure it out....needless to say we still have a switch that doesn't work!! Husbands just don't listen! :)

Saturday late afternoon we went to some friends house for a BBQ. It was also Curt's birthday so we had an ice cream cake over there for him too. We were gonna come home and build a bon fire since it was chilly outside last night but by ten we were all already yawning so we decided to pop in a movie and relax on the couch!

This morning I woke up to breakfast in bed (I know he's a keeper) and then pretty much that is it. I kind of feel like I should be doing something else, like I am wasting my weekend, but at the same time its REALLY nice especially since I am having horrible PMS!! :)

Thursday, February 5, 2009

Last few days...

So Tuesday was my birthday and it was great. I went to pulmonary rehab in the morning, went to lunch and a movie with Karen in the afternoon (got a gift card to get a pedicure, thanks Karen!) and went to dinner at PF Changs that night.

Bride Wars was AWESOME....I laughed so hard and yes cried too. I cry a lot during movies...but Karen was crying too so I know it wasn't just me! :) That is definitely a movie I will want to buy and add to our collection when it comes out.

Yesterday during the day all I did was work! I used to work a few hours everyday but with pulmonary rehab taking up a big chunk of my mornings on Tuesdays and Thursdays I am finding myself working only on M,W and F so I have to work almost all day to get in all my hours. Oh well. At least I work for an awesome company that allows me to be flexible like that!

Last night while we ate dinner we watched Taken, yes I know its still in theaters but my brother-in-law had it somehow so we borrowed it...let me tell you it was GOOD. I was on the edge of my couch the entire time! I don't want to give away any of the movie explaining it so just take my word and see it, I know you will like it.

BTW....does anybody watch American Idol? Is there anybody anyone has noticed in particular that you think will do well this season? I am just thankful they got rid of bikini girl last night, I wasn't sure if I could take anymore of her! :)

Oh yeah, I have my ultrasound tomorrow morning at 8. I am still having stomach pains so lets hope it has nothing to do with my gallbladder! I will let you know as soon as I know.....later gator.

Tuesday, February 3, 2009

Happy Birthday to Me!!

Today is my 27th birthday!

Unfortunately, I still have to go to pulmonary rehab today...but that's ok. I hope everyone has a great day, I know I will! :)

Monday, February 2, 2009

Happy Groundhogs Day!!

Well I guess Punksatony Phil saw his shadow this morning so that means 6 more weeks of winter! Not that that means to much to me here in FL but I thought I would tell you anyway! :)

Also, tomorrow is my birthday! Karen and I are going to the movies to see Bride Wars (we knew the hubby's wouldn't mind missing it) and then Danny and I along with Curt and Karen will probably go to PF Changs for dinner since its my favorite restaurant.

I already celebrated my birthday with my parents and the rest of my family this past weekend. It was a lot of fun , my best friend and her boyfriend and there children came over and my mom made a really yummy ham and all the sides that go with it (I love ham and wanted Christmas dinner again so that's what she did!) and best of all, my ALL time favorite ice cream cake from Dairy Queen!!! It was really nice and I got some cute stuff for the house from my mom. Here are a couple of pictures from the other night and I am sure I will have more when we go to dinner tomorrow.

There were ALOT of candles...27 to be exact! :)

I LOVE ice cream cake!!