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! :)
We have lived in our house for a year now and since I am pretty much the WORST person on making any kind of decision on ANYTHING....I have not been able to pick out lamps for our bedroom, until today!
I didn't know what I wanted, all I knew was that I hadn't seen anything I liked yet. Today, Karen and I went to Home Goods just to window shop not really needing to buy anything and there they were on the shelves...MY LAMPS...let there be light!!!
The lamp shades are pretty cool, its kind of hard to capture it on the picture but it has kind of a raised pattern all over it.
This is the wall art I bought at Kohl's awhile back and I couldn't remember if I already posted a picture of it . If so here it is again just because its a great motto to live by!! :)
Last night we went out for our friend Karen's birthday. We went to a little Italian restaurant on Fort Myers Beach and after we were stuffed full of yummy food we went to the Lani Kai (a hotel on the beach) and had a few Rum Runners. It was so nice outside and we had a great time!
Curt (Karen's husband) was the best man in our wedding and has been friends with Danny since they were kids back in Minnesota were they are from. Last June, Curt married Karen (I couldn't go to the wedding cause I was in the hospital AND I was newly on the transplant list so Danny went without me because he was in it) and in July they moved here to Florida. I am so glad that they did because I have become really good friends with Karen and we always enjoy going out with them!
Well, today I had a scheduled appointment with my wonderful pulmonolgist Dr.Faverio. I needed my port flushed an just a "regular" check-up.
A couple of days ago I started having belly pains on my right abdomen again and was a little worried it might be the gallbladder sludge again so I was glad I already had the appointment made.
My check up went well, he said I was a little tight and he heard tiny wheezes but thinks it might be the cold air so he said just to do an extra breathing tx for a few days to help that. Other than that im doing good.
I have to get some blood work next week that Gainesville forgot to have me do last week when I was there (they are SO unorganized!!) and to just be on the safe side I am having an ultrasound on my gallbladder/liver to see about my pains...but my doc is 99% sure my pains are because I am ovulating....I felt so silly!!
Other than that not much is going on.....anybody have anything interesting planned this weekend??
So does anybody else watch the new 90210 on the CW?? I do and I LOVE it!! I loved the original and was skeptical when they talked about bringing it back but I am hooked. If you haven't already you should check it out...Tuesday nights at 8:00pm est. ;)
I am SO looking forward to Confessions of a Shopahloic coming out in theaters on Valentine's Day!! I have read all the books written by Sophie Kinsella and I think they are a riot...I just hope the movie does them justice.
Well, for us it's cold! I have been wearing a sweater all weekend and for me that is odd because I am ALWAYS hot!
It gets down to the 40's in the morning and night and then a high of like 60 something during the day. It was so cold in our house Friday night I had Danny put the heat on for a little bit just to warm up the house...and of course since our heat hasn't been on in forever it smelt like our house was on fire...yuck. Its ok though these cold spurts never last long and it will be in the 80's again before we know it and then I will be complaining that I am hot!! :)
Last night we had a lot of fun. Danny's brother and his wife and a few of our friends came over for a game night. We were going to play pictionary and then someone (im not sure who) suggested we make up our own game called...porno pictionary! OMG, it was the funniest/most disturbing 4 hours of my life that I can never get back! lol
When you have 3 of the 4 guys in the house dedicated Howard Stern listeners there is bound to be some off the wall things you are expected to draw! I didn't even know what more than half the stuff was! It was definitely funny though.....do you remember on the movie The Cable Guy when Jim Carey's character wanted to play "porno password" that's were I think the idea came from.
We rented a movie Friday night called Surfer Dude with Matthew McConaughey. It was HORRIBLE I fell asleep on the couch and I hardly ever fall asleep during movies so that is saying something! Luckily it was only a dollar at the redbox so its not that big of a deal.
Well, I hope everyone is having a great Sunday!! ~~Jen
So I completely forgot to mention that I had a Shands (my transplant center) check up coming up. It was yesterday and I have to say it went pretty well.
They are THRILLED that I have started my pulmonary rehab and say thats the best thing I could do for myself for after transplant~~which I already knew! :)
One thing that I was really worried about was doing my PFT's. I thought for sure they would have gone down. It's been awhile since I have had to do one and I have been in the hospital A LOT lately so I was a little concerned about what the results would say. To my surprise my FEV1 was actually the same as it was a year ago which I am SO thankful for.
They did tell me that when I am moving around I should be wearing my oxygen more...which I kind of knew already it just sucks them actually saying it. When I am sitting my oxygen stays ok but as soon as I move it drops which isn't good. I am hoping with me being more active now with the exercising and stuff that will improve a little but who knows.
Also, I know a few CFers who read my blog are/were on oxygen all the time and I was wondering what you did/do for when you went out. Did you use big "E" tanks or did you have something smaller to lug around??
At home I have a big concentrator which I use when I sleep and then I have a little concentrator that I bought a year or so ago to take with me to NY (its like 10pounds and it is portable and acceptable on airplanes and I needed to be able to have something with me to sleep at night) that I use when I am around the house but the battery life on that thing isn't that great so its plugged in a lot of the time.
Anyway...any feed back on this is appreciated. IF I have to start wearing oxygen when I am out the least noticeable kind is the better! Thanks in advance~Jen
So Saturday night my sister-in-law and I went out with a few friends for a "girls night out." We went to PF Changs for dinner (love it) and then a movie. Steph (my S-I-L) and I weren't sure if we were gonna go to the movie but were excited about dinner, especially Steph who has 2 kids and doesn't get much girl time! :)
We get to the restaurant and not surprising there was a 90 min wait! So Stephanie goes and gets me and herself a couple of drinks and we proceed to wait our time to get in. This whole time I am fine talking, drinking my cosmos whatever. Our little bell thing goes off, we get up go to the front desk then they take us to our table which of course is WAY in the back of the restaurant...lucky me.
So we sit down and for whatever reason I could not catch my breath. I don't know if it was the cosmos (I just had a couple its not like I was wasted) or the hike to the table but I was not feeling good. So I ordered a coke and everyone else ordered there appetizers and when they came to the table I couldn't even eat anything because all I could think about was not being able to catch my breath. So my SIL looks at me and says "are you ok, do you want me to go get your oxygen?" and of course I was like "no, I will be ok."
Well after all the appetizers were done and our food was about to come out and my SIL asking me like a MILLION times if I wanted my O2 ...even saying that if anybody looked at me funny or said anything she would throw her plate at them (which made me smile) I finally agreed to let her go get it because I was completely miserable and wanted so badly to enjoy my seared tuna (my favorite) so she did. I automatically started feeling better and I was able to be apart of the conversation and even though I felt like everyone must have been looking at me I don't really think they were. PF Changs is super dark inside so that kinda helped. ;)
I was super upset at the fact that this was the FIRST time I have ever used my O2 in a public place but in the end I was glad I did because I was able to have a good time and feel ok doing it. I might need a transplant but that doesn't mean I have to be couped up in my house from the rest of the world until that happens!!
My little guy did great during his "procedure" and has spent most of the afternoon/evening cuddled up next to me resting! The only minor problem he had was when we got home he threw up a little, but the sheet of paper that we were given said that could happen from the anesthesia.
Also, I got my new rim!! I am almost back to having my car back to normal....goodnight.
Tomorrow I have a FULL schedule starting with dropping Mr. Brodie off at 8:30 to be neutered!
I think he knows something is up...he can't even look at me!!
Poor guy can't eat or drink anything after midnight tonight. I was surprised though that we get to pick him up at 3:30, my sister-in-laws cat had to stay over night when he was fixed!
After dropping Brodie off I have to go to the bank, go to pulmonary rehab, hopefully pick up the new rim for my car, try to get a few hours of work in, and pick up Brodie's revolution all before its time to drive back into Fort Myers to pick him up again! Oy vey!
Today was another fantastic day at PR!! I feel a bit tired and probably will take a small nap later but it went well. I tried a new elliptical machine today and boy did it KILL my legs! :)
It was kind of funny, as I was sitting there after the elliptical machine trying to catch my breath before I moved on I saw this little old lady watching me. She then walked over and proceeds to tell me how she has COPD and has to sleep with oxygen and that she finds it very hard to breath normally with the oxygen tube in her nose and she was noticing how I was just breathing without any problems and I told her I have been sleeping with O2 for a year 1/2 and you eventually get used to it!
Also, this morning I bought a workout DVD and exercise ball online to use on the days that I am not at pulmonary rehab....thank you Sara for the suggestion on videos!!
Update on my car...I just put the order in today on a new rim :( and it should be here in a couple days, then I can get that stupid donut off my car. I swear that everyone and there brother is looking at me when I am driving down the road with that thing on!
So I forgot to mention in my last post that while I was on my way to pulmonary rehab last week I drove through a pot hole in the road (on accident) and blew my tire!
After hitting the pot hole I heard a strange noise so I pulled over right away and sure enough there was a huge gaping hole in the side wall of my tire! So I call my husband who wasn't working anywhere near where I was, so I then called my brother-in-law who was a few minutes up the street and he came and changed my tire for me so I could go to my pulm rehab class.
Then, come to find out later that evening not only did I blow my tire and now need a new one but i also bent my rim...which really stinks. I am taking it to a friends shop in a little bit (its an auto body shop) to see if anything can be done with it. Sometimes if it isn't that bad they can fix them so I am just praying that it can be fixed because I do NOT want to have to buy a new rim too!!