Thursday, October 28, 2010

Finally Feeling Better!

I spent a week with the Dr who shall remain name-less not getting better at all. When in swoops my wonderful Dr on Tuesday tweaked a few things and had me on the path to feeling better almost instantly. Its amazing how having a Dr who knows you and cares to listen what you have to say can have such an impact on how you feel! I truly am blessed to have the CF Dr that I do!

So I am on 3 different abx, 3 days of VERY high steroids, breathing treatments every 4 hours and I just started taking Zen Pep instead of Pancreacarb Ms-8 while in here too. Anyone else on those? I had an overstock of Pancreacarb at my house so I was trying to use all those up before I have to buy the new med but in the hospital they only have the new stuff so we have been trying to get my dosage right. Apparently I am on a "lower" dose than most CFers, I use to take 4 Pancrecarb Ms-8 with meals (or 24,000 units) so thats what's new with me.

I have a newspaper interview that I am doing on Monday from the hospital for Jen's Kids. The 2nd and 3rd rooms are almost complete! Very exciting stuff!!

Well that's all I got for now...sorry that's what a week and a half of the hospital does! Have a great Halloween weekend and everyone stay safe!

Thursday, October 21, 2010

Am I being ridiculous?

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 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 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

I think its almost that time...

Yesterday and today I have been feeling a little more SOB than usual. Its almost at the 2 month mark of me being off abx so its not unusual that this is how I am feeling. It just sucks that its like clock work...

I have been feeling so good lately too. I have been going to yoga, I have been out almost everyday with my SIL "window shopping" (wink, wink) cooking dinner every night, doing all my treatments like usual so why oh why do I have to wake up and feel this way? and why can't I stay out of the hospital for more than 2 months??!!

I had planned on going into the hospital Nov. 1st that way I was for sure out by Thanksgiving and Danny's birthday and I would be well through Christmas. Plus I have plans the next couple weekends that I really don't want to miss so me not feeling good is totally cramping my style!!

I know, I know...if I don't feel good I shouldn't push to stay out because that never goes well so I will see how I do today and tomorrow and if I have to call the doctor I will. Just know that I won't be happy about it! :(

Anyway..other than that I am totally loving the cooler weather (when I say cooler I mean its 78! lol) and the lower humidity we are having here in SWFL! I can't wait till we can bust out the sweaters and have some bon fires!! :)

Thursday, October 7, 2010

Lung Transplant Center Party

Its already almost been a week but at least my post is better late than never!

Last Friday my mom and I went back up to Gainesville (after being there Wed for a clinic appointment) for my transplant centers 16th anniversary celebration. We drove up for the party that was from 2pm-6pm stayed the night in a hotel (its a 4hour drive from my house) and then woke up the next morning to come home. Needless to say I was pretty much exhausted all weekend from the trip!

I was a little apprehensive about going and im not sure really why. I mean I love all the wonderful people I have met and talk to through my blog and you guys have been tons of help to me in any of the questions or concerns I have brought your way but still I wasn't to excited about going. But my mother thought it would be good for us so up we went!

When we first got there they had guest speakers talking about all the different experimental things they have in the pipeline as far as lung transplants go and its all very exciting stuff! I will have to see about getting some of the pamphlets from my mom and maybe doing a couple post on them.

After all the speeches were done they had food and drinks and everyone kind of mingled around and talked. I met some really nice people who all have had there transplants at Shands. All of them gave me some "pointers" on what they thought the hardest part of surgery was, what to expect etc. This one gentleman in particular I was really impressed with looked like he just stepped off a golf corse (you know polo shirt, khaki pants, shinny silver hair, sun-kissed skin) he looked FABULOUS and he was 10yrs post-tx!!

I also met a girl there who is around my age with CF and she just had her tx like a week or two before. The crazy thing about her story is after we were talking for a bit we found out that she not only lives like literally 2 minutes away from me we also have the same hair dresser! Small world, right?

In the end I am super glad my mom pushed for us to go. It was really nice. Oh yeah...and I won a necklace and earrings in a raffle and I never win anything!! :)

This week has been ok health wise. I finished my 14 days of Cipro. My cough is better but I am still slightly more SOB than usual. I just started for the first time in years Tobi so maybe that will help!

OK..have a few more good days of the week and a great weekend!!

Friday, October 1, 2010

Food Do's and Don'ts!

Wednesday was my clinic day at Shands. My PFT scores were down a little bit but pretty much stayed the same. My Dr says my name has come up since my last call several times but nothing ever good enough to give me a ring. So I still wait....

While I was there I asked the coordinator if I could have a booklet of do's and don'ts for post tx. I got one when I first came to the center back in 1999 so I figured they had new/updated material since then and I was correct!

Just the other day or week or something I was reading one of Piper's FB statuses and it was all about her tx center not wanting her to use the subway (she lives in NYC) for the first year post tx so I wanted to know what my centers rules were.....especially for food!

I know no sushi (raw sushi) and I know no buffets/salad bars, for good reason...I mean I love me a good buffet but have you seen some of the people who go to buffets? Yeah THATS why I can't eat at buffets post tx! LOL

But does that mean if I go to say Outback for dinner and the waiter asks me soup or salad I forever and always have to choose soup? Cause that's what my center says! I mean part of the reason I love Olive Garden is because the salad is the bomb and Danny LOVES to eat at Jason's Deli (salads, sandwiches etc.) can I never go there with him again?

I mean I know if it came down to it and I had to choose living/breathing or a salad I would rather breath every time and something as stupid as eating a salad isnt that big of a deal but its not the only thing....

I like my meat cooked medium rare. My center says at least Medium...which I think I should be grateful for because I think I saw on another centers website they say well done and I would HATE that! The one thing I will miss the most is seared tuna....they say that is a definite no no. I think I should start eating it every week until I get my tx! :)

The booklet I have is kind of general too so I guess I am just worried about not doing everything exactly perfect.I know at first everyone is really strict and over time you learn more of what you can and can't do I just don't want to mess anything up and if that means no more seared tuna than thats what I gotta do!

On a side note, my mom and I are heading back to Gainesville today. They are having their 16th Anniversary of the lung transplant program. Shands also just received a MILLION dollars from the state of FL for lung tx research so there will be a Senator and State Rep there giving speeches about that.

Well, I need to pack my crap mom will be here in a couple hours! Have a great weekend everyone!