Thursday, December 23, 2010
Sunday, December 12, 2010
Saturday, December 4, 2010
Thursday, December 2, 2010
Tuesday, November 23, 2010
Thursday, November 4, 2010
Well its taken 2 weeks but the other day I FINALLY started to feel better thanks to some 3% saline treatments! Along time ago I used to do 7% hypertonic saline treatments but they would cause me to have horrible bronco-spasms and wheezing so I stopped doing them. With this admission I was finding that my left upper lobe was just not getting the junk out on its own no matter what I did so my doctor suggested I try the 3% to see how well I tolerated it. Luckily it went well and almost instantly I was feeling less sticky in my lobe and I was able to clear the mucous out easier! Have I mentioned that I love my doctor and am thankful he is back?? :)
Yesterday, I had another interview with the newspaper for Jen’s Kids. I think its gonna be a really good article I am just going to have to get used to the fact that they want to take pictures of me with my oxygen on to put in the paper. I know that thats really me but I just hate the fact that I even have to wear it all the time let alone be put in a paper that everyone in the town I grew up in is gonna see. I guess that’s just me being vain but I can’t help how I feel.
I got to go out on pass on Sunday. I went with my SIL and we got pedicures and I got my haircut. It was so nice getting out of the hospital for a little bit and the pedicure was complete bliss! Definitely what the doctor ordered.
I missed Oktoberfest this year which was a huge disappointment but hopefully this time next year I can go and not be on O2!! Let me rephrase that...next year I WILL be going without oxygen!!
Well, I guess that’s all I got for now. Monday is 3 weeks I have been in the hospital but I have strong feeling that I won’t be going home then. Especially since the whole first week I was here was basically a joke thanks to the Dr who shall remain nameless. But we shall see.
Have a good weekend everyone!!!
Thursday, October 28, 2010
Thursday, October 21, 2010
Well for those of you who don’t know. I was admitted on Monday like I predicted! I had a horrible night of no sleep Sunday night so first thing Monday morning I called my doctor.
Of course as my luck would have it, he was leaving the very next day to attend the CF Conference for a whole week! Ugh! Well I knew I couldn’t wait a whole week for him to return and I didn’t want to chance getting even sicker so I was admitted and will be seen by the Dr who is on-call. Which happens to be the Dr I have had issues with in the past and who isn’t my favorite person in the world to begin with. :(
So, I have been here 3 days and already I have some issues...so please let me know if I am being ridiculous....
Like I said I have been here 3 days and I have only seen the Dr once. The other two times I have been seen by a Physician Assistant STUDENTS. Now I have no problem letting a student come in and do there thing but I would still expect to be seen by the Dr.
Especially because today I was having a little bit of the SOB come back. My nurse told me that the Dr would be back in the afternoon so I could see him then and let him know how I was feeling.
Well around 7:30pm the nurse comes in and tells me that the Dr had ordered a chest x-ray for the morning and some PRN treatments if needed but that he wasn't coming in to see me. I mean WTF?? I felt like I wanted to cry.
I am here to get better but if he never actually comes in to see me what’s the point of being here? And its not like these are PA students who are like almost ready to graduate they still have like another 10 months to go out of a 2 year program!
I just don’t want to be here all week basically twiddling my thumbs waiting for my awesome, wonderful, caring super Dr to be back when I could be getting better instead!
Please tell me...am I being ridiculous? and if I am not being ridiculous what should I do? I don’t want to say something and then have him be rude to me the rest of the week cause god forbid I make him actually come in and do his job! Grr...he makes me so mad!
Sunday, October 17, 2010
Thursday, October 7, 2010
Friday, October 1, 2010
Sunday, September 26, 2010
Thursday, September 23, 2010
Sunday, September 19, 2010
Saturday, September 11, 2010
Friday, September 3, 2010
Sunday, August 29, 2010
Friday, August 27, 2010
Thursday, August 26, 2010
Tuesday, August 24, 2010
Wednesday, August 18, 2010
Friday, August 6, 2010
Thursday, August 5, 2010
Sunday, August 1, 2010
Saturday, July 31, 2010
Wednesday, July 28, 2010
Monday, July 26, 2010
Sunday, July 25, 2010
Saturday, July 24, 2010
Wednesday, July 21, 2010
Within the last month I have got my Macbook Pro (which is awesome!) my ipod touch, and now my new iphone (3GS....still to many problems with Iphone4!) Its to bad I had already had a Barnes & Nobles Nook before the Ipad was out! Oh well...On a side note, I am down to 25mg of prednisone today...woo hoo!!! LOL
Sunday, July 18, 2010
Friday, July 16, 2010
Wednesday, July 14, 2010
Sunday, July 11, 2010
Thursday, July 8, 2010
Tuesday, June 29, 2010
Friday, June 25, 2010
Monday, June 21, 2010
Then Saturday night, Danny and I went out to dinner at my one of my favorite restaurants for Father's Day with my family. I was STUFFED by the time we left I could barely move! I do that to myself every time I go there I just can't help myself! I must have eaten 3 loaves of bread alone not to mention my seared tuna appetizer and my dinner, I had no left overs to take home! I am SUCH a little piggy!! Oh well...hehe.
Sunday was Danny's dads day to see us. We went over for brunch and ended up staying over there most of the day. We swam in the pool a little bit and then proceeded to play a game of Phase 10 that NEVER seemed to end! All in all it was a good day though.
Here are a few pics from Sean's party and dinner with my parents:
Nothing really to report on my end. Still no call. More and more everyday I feel myself getting a little more discouraged with not getting my call. I mean I am doing EVERYTHING I am supposed to. I go to yoga, I try and take the best care of myself that I can, I try and live my life to the fullest everyday despite having to lug an O2 tank with me and I thought I was doing all this with a positive attitude knowing that my time is coming soon but after 2 WHOLE YEARS of waiting and seeing countless CFers be put on the list after me and receive there lungs before me its really hard to not get discouraged and feel like this is never going to happen.
Even though I am over the moon at how well my Cyster Piper is doing (which I had know doubt she would do so well she is a fighter) I can't help but be a tiny little bit jealous because I so badly want to be over that hurdle and also be working on my way to getting my life back! I feel horrible even putting it in writing that I feel this way but its true.
I know that when my perfect set comes I will get the call and I know it WILL happen its just hard waiting. OK enough of the poor me section of this post! I am going to go eat dinner now and watch some boob tube with the hubby....thanks for listening to me pout for a minute! :)
Wednesday, June 16, 2010
They had a great turn out with lots of family and friends coming to celebrate Jordan's milestone. The kid made out like a bandit too....to bad my mom is making him save all his money for when he goes to school! I know I know its the responsible thing to do....try telling that to an 18 yr old who just got a load of cash and gift cards!! :)
The rest of the week I haven't really done much. I was feeling kind of crappy yesterday and was hoping I wasn't getting a cold that has been going around. A few people I know haven't been feeling good. Even my dog Brodie was sick yesterday, he threw up twice and when he went #2 it was not his normal #2 (dont want to give tmi its kinda gross!) But he seems to be doing better so far today. If he still wasn't acting right today I was gonna call the vet.
Pool day tomorrow with my fab sister-in-law and some old girlfriends (love that I am finally getting some color!!) and then yoga on Friday!!
I also wanted to mention my Cyster Piper who after many dry runs and one "damp" run as she likes to call it FINALLY got her lungs and she is doing great just like I knew she would! She is a real champ and I can't wait till she is fully able to enjoy her lungs and let us all know how great it can be post-tx. Now if I could just get my stupid phone to ring we would be in business!! :)
Tuesday, June 15, 2010
We are extremely proud of Jordan and we are all a little sad to see him go off to college in August. We are a VERY close family and he is the first one to go to school in a completely different state. But he wanted to play football in college and had to go where the scholarships were being offered....so off to Ohio he goes. Oh yeah and did I mention we have lived in FL our whole lives and Jordan has never seen snow? This winter should be interesting for him!! LOL
I have already cried when he made the final decision to go to school in Ohio so I am sure once August roles around there will be more tears. But I plan on investing in a web cam so we can skype! I know I am such a nerd...you would think it was my own kid going to college!
Wednesday, June 9, 2010
It just doesn't seem fair that there is only one day a year to recognize the other 364 days of you putting up with me!! Thank you for being the best husband and best friend a girl could ask for. I Love You!!
Tuesday, June 1, 2010
Danny and I keep saying ok we need to get a bag packed so when we get the call we can just go. But I seriously have know idea what to pack! I am at a complete loss on what things I will need and what things I wont need till later on.
So I am asking all online friends out there who are post-transplant to please help. What items did you bring in your bag? What items did you not bring that you wish you had? What things will be most helpful for my time in the hospital and then when I go to the apt?
Anything else useful that I am forgetting please feel free to throw in there! Every little bit helps...I was up all night last night because every time I fell asleep I would dream that I got my call so its making me feel like I am not prepared (mentally yes, packing wise no!) at all.
Sunday, May 23, 2010
Friday night we went to one of my favorite restaurants for a friends B-Day dinner at PF Changs. I LOVE that place...Seared Tuna and Mongolian Beef...YUMMO! :)
Today, we just ran errands all day. Got my car an oil change, went to pick up Danny's ring from the jewelers, went to Barnes & Nobles to look at the FABULOUS Nook I am hoping to get for my Anniversary in a couple weeks (hint, hint) and then went food shopping. Now we are just relaxing and cooking some pizza at home. Gonna watch the finale of Celebrity Apprentice in like 20 min...hope Brett Michaels wins it all!! :)
Thursday, May 20, 2010
Yesterday, my appt time was at 11:30 and I no test scheduled so it was "supposed" to be and easy day. We left my house at 7:00am got breakfast then got on the road arriving in Gainesville a little ahead schedule. We go up in the elevator to the 3rd floor and walk into a waiting room FULL of people. Right there we had a bad feeling it was going to be a LONG day. With my tx center you are either in and out or you wait HOURS...its never in between!
So I sit down they call me back to do my vitals and then I went back to sit with my mom. Surprisingly enough we got called back rather quickly and put in a room. Within 10 minutes the tx coordinator came in and asked if I could do a six minute walk and PFT because if I didn't I would have had to come back in 3 weeks instead of 3 months because your test have to be updated in the system every 6 months or it automatically makes your score a 0 and since we can't have that I needless to say did the test even though I wasn't to thrilled about it.
So I did my six minute walk and did fine but when I did my PFT and I looked at my numbers after each time trying I knew I was a couple of points down from the last time I was there. Which isn't to big of deal because I have been in the same range of numbers for the past 2 years..it goes up a couple and down a couple but basically its been the same.
After all my test were done we went back into a room to wait for the Dr. So the short version of this story is when he came in he looked at my test scores and was like well we need to get you transplanted...and im like well DUH I have been waiting 2 years!! He then had me stand up to see how tall I was (5'4" btw) to see if maybe he could bump up my height which will open up then window a bit of what lungs I can receive.
I know I have said this before on my blog but I have never in my whole 2 years going to Shands knew what my LAS was because I was told back when we started this process that they don't tell you so don't even ask and I think it was Sara who told me...um no Jen you absolutely can know! So yesterday I asked if I could know what my score was and surprisingly he said sure and called the coordinator in right there to look it up. She opened my file and found out that I was at a 37.9. The Dr then questioned why my score was so low and right there in front of us they went into the computer and updated my name and bumped my score up to 41!! So hopefully with that bump in my score I will get some kind of action and actually get my call! How exciting would that be??!!
Once we were all done with the appt we got in the car and headed home. It felt like it took FOREVER but we pulled in the drive-way around 7:oopm and I was exhausted! I didn't even want to cook dinner last night I just wanted to go to bed and watch American Idol and General Hospital. LOL
Overall it was a good day...I don't have to go back till August but who knows maybe I will be there sooner! Keep thinking positive thoughts for me. I know there are a lot of people out there waiting right now but I am ready!! :)
Tuesday, May 18, 2010
I am feeling pretty good so I am sure they will say I am doing great and that they will see me in 3 months....story of my life! Oh well its better than being sick so I guess I will take it! :)
On the upside I have been going to the beach pretty regularly and am starting to get a nice base tan going on! I probably would have more color by now if I wasn't such a fanatic about not wanting to burn so I reapply my sunscreen seriously like every 30 minutes. But its better safe than sorry and I don't want to turn into a lobster...and then peel. ewww that's just NOT fun!
I have a full schedule of things planned this week. Dr appt tomorrow, beach or pool Thursday with an eye brow waxing appt at 5:45, hair cut and maybe a few highlights Friday, Friday night dinner at my fav PF Changs for a friends Bday, and then Saturday me, my mom, my little sister and my cousin are driving up to Tampa to see Mary Poppins the musical!! We are totally excited about this and I am sure I will have pictures to share once I get home!!
Well, I hope everyone has a great week!!
Sunday, May 16, 2010
I have to believe that my time is soon. Unlike so many of my transplant waiting-list friends, I "knock on wood" have never even had a dry-run.
I fully believe that there is a bigger picture plan out there for everyone and I guess my turn hasn't come yet because if it had I wouldn't have ever come up with the idea to start Jen's Kids and that is something that I am very proud of.
Hopefully (I say this every year) 2010 is my year. I am ready to move on to the next phase in my life and I can't do that until the flippin phone rings!!! :)
I guess whenever you are in the mood to say a little prayer or to throw some good vibes out to the universe, please think of me and that I get my call soon. I would very much appreciate it!