Saturday, July 31, 2010

Sweet 16

This past week my baby sister turned "Sweet 16." I can't believe she is 16 already, I remember just like it was yesterday when my parents told me I was going to have another little brother/sister. I also remember praying it was a little sister because I already had 2 little brothers and did NOT want another one! LOL I was there in the Dr's office when mom had the ultra sound and we found out together that I was gonna have a sister and we both were thrilled! So, I hope you had a great birthday my Messy Jessy...I love you! :)

Danny & I

Opening a little Blue Box from her Big Sis!

Me & Jess

On a side note I definitely think I will be going back in the hospital on Monday. I would rather go back in for a week and be good and healthy then stop my antibiotics and have to be re-admitted in a month anyway because I stopped to soon.

Also, I think part of my problem why I haven't felt better while being home is because my home nebulizer compressor hasn't been working properly so it wasn't smoking like it should have been! I just realized that yesterday...jeez! I am all good now with a new compressor but its like I have been doing no treatments for the last week and half. Ridiculous!

Tomorrow I am going shopping with my mom. Hope everyone has a great Sunday! :)

Wednesday, July 28, 2010


Today I had to go to the hospital as an outpatient to get my port re-accessed and the dressing changed (happens once a week.) I usually never have to do this because I have wonderful nurse friends who come to my house and do it for me but they were both busy today and I needed it done, so in I went!

I could have home health come to my house and do it...but believe me when I tell you that was a SCARY experience I never want to have again. The nurse new nothing about accessing a port, down to she touched the needle itself with her BARE HANDS!! Um...hello ever here of sterile precautions when dealing with a medi-port? Jeez...needless to say I don't deal with home health anymore I do everything myself. Maybe that's why I am so tired all the time?

Anyway, once I was done at the hospital I decided to pop into my Dr's office since it is right next to the hospital to see if he could just take a quick listen to me since I am still not feeling to great. It just so happened that it was my lucky day and there was no one in his office and it was a clinic day too! So he actually gave me a full check-up which was really cool since I just showed up.

He says that I have a little bit of wheezing in my right upper lobe and a few crackles in both my uppers which is where I usually have my congestion. He ended up giving me another inhaler to do twice a day like the Advair hoping that will help out without me having to go back on prednisone since today was my last day (thank god!)

We both agreed that if by Monday I am still not feeling up to par I need to be re-admitted to the hospital. I am kinda bummed about this so please think positive thoughts that the next 4 days these antibiotics preform some sort of miracle and I miraculously feel a million times better or its back into contact isolation I go....oh joy.

Monday, July 26, 2010

One more week...

Boy did I call it. One more week of abx for me!

My doctors office called me this morning and said that yes I was to continue with home IV's and oh btw I needed to get to a lab by 4:00 to get drug levels and a bmp done.

Well that's all fine and dandy except Danny took my car to work with him today because we thought I didn't need to go anywhere (my Honda gets WAY better gas mileage than his Ford Lightning SVT!) today and oh yeah he had his keys too!

So I had to call my super awesome SIL and she came and saved the day and took me to get my blood drawn. When it comes to SIL I have to tell ya I got lucky in that category! Stephanie is there every single time I have needed her and I don't think I will ever be able to "re-pay" or give back all that she has done for me, even though I will try! :)

Anyway...I hope this last week of abx does the trick. I need to start feeling better already!!!

Sunday, July 25, 2010

800 Days

Today my little counter on the side of my blog says that I have been listed for a double lung transplant for 800 DAYS!!!

I would never have guessed in a million years that I would be waiting this long. I have to believe that 2010 is my just has to be. If not I am likely to loose my mind!! No not really, but it sure feels that way sometimes.

I am just ready to FEEL better.

Last Night

Last night we went to dinner with a big group of friends. We ordered and ate WAY to much food. The restaurant is served family style so everybody has a little bit of everything. The waiter said the small order fed 2-3 people while the large order fed 5-6 people.

We had 2 tables sitting next to each other full of people, but our table had 8 people (4 couples) so we decided to order 4 large dishes...each couple picking a different dish. Figuring with what the waiter told us that was appropriate.

We ordered Lasagna, Chicken Carbonara, Spaghetti w/meatballs and Chicken stuffed with prosciutto and cheese with a pesto sauce underneath. All fabulously delicious but to much....the Lasagna and Chicken needed to be large and was all eaten, but both the Spaghetti and Chicken Carbonara came out in humungous bowls. They were so big that we all took some of each home and thats after all of us eating some of it too. We definitely know for next time we can order smalls for that stuff!

I was so full by the end I could barely breath or move and was on total carb overload I could have gone to sleep right there! LOL But it was another great night with great friends so it was worth the gluttony for one evening. :)

Here are a few pictures from last night:

The girls

Me and my fab SIL Stephanie

Me & Danny :)

Today, I think Danny and I are going to run a few errands but other than that just hang around and relax. Right now my awesome husband is downstairs making me breakfast while I sit here and do my treatments...I can smell the bacon...YUM!

Saturday, July 24, 2010


Well its Saturday and I am supposed to be done with my abx either Monday or Tuesday (can't remember) but I don't think that is going to happen...

I called my doctors office yesterday and of course my doctor wasn't in the office. I love my doctor and wouldn't trade him for anyone in the world but man does that man seem to take a lot of vacation days!!

Anyway I get side I called his office yesterday to tell him that I still don't feel 100% and that I think I need to continue my IV's at home for another week. So I am waiting to hear back from him on Monday to see what he is going to do.

I know he will keep me on abx if thats what I think (he is really good about listening to what I think) is necessary, I just don't know if he will keep me on the same abx or switch it up since after 2 1/2 weeks I am still not better...maybe I need another drug cocktail or something to kick this bugs butt!

I have one more day left of prednisone, hallelujah!! That day couldn't come soon enough I am about DONE with it. I am ready to stop being puffy/moody and I am sure Danny is too! :)

Tonight we are going to dinner with a big group of our friends. We are going to Buca di Beppo its an Italian restaurant served family style. Kind of like Carmine's in NYC if anyone has ever been there (I have its delish!!) So I am sure I will have pics to post later.

Have a good weekend everyone! :)

Wednesday, July 21, 2010


Look at my new cell Phone!! I guess the saying is true...once you go Mac you don't go back! :)

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

Im miserable...

I am so glad to be home but I am so PUFFY because of the prednisone I am miserable!!

Tomorrow is my last dose of 50mg and then I start to tapper down the dose and I will be completely off them by the end of the week. It can't come soon enough...I usually don't get all the weird side effects that come with being on Prednisone because I am never on it long enough (more than 10 days give or take) or on that high of a dose to really cause a problem. I have never had the mood swings or anything like that.

Until this time...I was on so much solumedrol in the hospital (I was getting it every 6 hrs) and now the prednisone at home, I am finding myself very irritable and annoyed very easily and snapping at my poor husband for no reason! As soon as crankiness comes out of my mouth I realize I am doing it but I can't stop!! :(

My face/eyes are really puffy first thing in the morning and then get a little better as the day goes on but my belly is puffy my hands feel puffy (my rings feel a little tight) just BLAH!!! gonna go now since I usually don't complain like this on my blog....sorry.

Friday, July 16, 2010

Im Home!

After all day of trying to get home health situated because of an apparent Amikacin shortage I was finally discharged at around 7:00pm to go home. Lets just say they are lucky I got to come home because I would have been one unhappy camper if I didn't!

Tomorrow is my mom's birthday so my whole family is gonna come up for dinner and cake! :)

On a little side note...the nurse who gave me the wrong insulin resigned today. I feel kind of bad that she is now out of a job, I didn't want anybody to lose there job but at the same time what she did was VERY serious...I am very lucky I woke up!!

Can you imagine after all these years of having CF, being compliant with all my meds and taking care of myself, waiting for a double lung transplant and the thing that finally does me in is a nurse who can't read a chart? I don't think so!!

Wednesday, July 14, 2010

8 days down!

Tonight marks the 8th day of me being on abx! The good news is my O2 is lowered and I am "good enough" to be discharged Friday afternoon to finish my IV's at home. WOO HOO!! :)

This works out perfectly since its my mom's birthday is Saturday and we had always planned on my whole family coming over to my house to hang out and have dinner. So I am glad I won't miss that!

Still don't know what if anything is going to happen with the nurse who gave me the wrong insulin (read my last post for this info)..but you should see how the nurses are double and triple checking everything they do now. Its kind of funny....but im sure it wont last long. They are all being careful now because something just happened but give it a few weeks and im sure it will become more lax again.

I am just gonna be glad to get out of here and try and shed this solumedrol weight. Sure I have gained weight because I can eat anything in sight...but instead of it being good calories for good weight I am eating because I am starving and ALOT so its going right to my belly! Not a very flattering thing! :(

Oh yeah, and I wanted to ask anyone who has a port or a you still do normal exercising while they are accessed? I usually wait until I am completely done with my meds before I start working out again and I was just wondering if I could go to my yoga class with my port accessed next week. That way I will have only lost 2 weeks of classes and not over a month. Let me know!


Sunday, July 11, 2010

its the weekend...

Well, its been an interesting week for me here in the hospital. The one thing I have been trying to get a hold of the most is my uncontrollable blood sugars due to the Solumedrol that I have been getting every 6 hrs. They have been crazy hi but I need the steroids so what can you do?

Last night I had a little "incident." I take 2 types of insulin Lantus which is the 24hr insulin and Novolog which is the fast acting insulin I take right before meals when needed.

Well last night at 10:00pm when I am getting my bedtime blood sugar checked and my nighttime dose of Lantus (my blood sugar was 117 which was really good for yesterday btw) my nurse says that I was to get an additional 10 units of novolog. I questioned her saying I thought that was wrong and what was my blood sugar from the night before (which it was 211 and I didn't require anything other than my Lantus.) She then tells me that my dr had changed the scale and thats why I was getting the extra coverage. So I said ok and that was that.

Fast forward to 2am when I wake up because I feel very hot and shaky. I grab my glucose meter and check my sugar real quick and was shocked when it came out to be 20! I hit the call light and quickly began to eat some oatmeal raisin cookies Danny had luckily brought me the night before and cracked open a Coke that I had sitting there from dinner.

The nurse came did whatever she had to do to follow protocol and then her and the charge nurse came in to tell me that she was really sorry but that she had read my chart wrong and that she wasn't supposed to have given me the 10 units of Novolog after all. Weird I was right....

Needless to say my Endocrinologist was NOT a happy camper this morning when he came in to see me and he also said that unless they say they have specifically talked to him I am only to get the Novolog at meals just like it said in my chart the whole time.

Do I have to ask the question again of why do the weird things always happen when I am admitted? I mean I guess we can just thank god that it happened to me and not some little kid who might not have woke up or recognized that they were feeling low and eat something. Its just scary sometimes....

Thursday, July 8, 2010

in the hospital

I was admitted Tuesday because I knew last week I was starting to feel crappy but I wanted to hold out till I got back from our 4th of July in Orlando.

Well needless to say I think I waited to long because I have felt like complete CRAP the last 2 days. My x-rays show that I have a few mucous plugs which I already figured I had anyway because I could feel little hard pieces when I coughed a few times (sorry about the tmi there.) So my first night here I was awakened every hour through out the night for breathing treatments so needless to say I was exhausted ALL day yesterday.

Then this morning I awoke thinking I felt a little better but soon after my first treatment/vest I started feeling really tight and my sats weren't staying above 90 and I was on like 8L of oxygen. So Dr. Faverio gave me 100mg of solumedrol IV and treatments every 2 hours and that did the trick to open me up and raise my sats and lower the oxygen. We both think that the plugs are moving up and out and that is what is causing my sob. So hopefully they come out with out anymore trouble and I can get cleared out!

My blood work also came back that I was a little dehydrated and that my electrolytes where low so that was a little weird I have never had that before. So I was on fluids for a little bit yesterday and then today he started me on some pill to help with the electrolytes. So we will see...

Anyway...that's all that is going on right now. I will let you know how I am doing in a few days. My goal is to be home by the 16th because my mom's birthday is the 17th so please think good thoughts that I can be home for that!