Thursday, August 18, 2011

3 months ...

No ... I am not three months pregnant! Today marks the third month of being listed. I know that 3 months is typically early to receive a call, but of course deep down I was hoping I'd be on of the lucky ones! Unfortunately, it seems that there has been a lack of suitable donors. My friend had her appointment at the TRX center and they said they have been getting calls, just nothing worth while.

I feel like this waiting game has me on a roller coaster of emotions. One day I'm pretty optimistic and can't wait for the surgery and other days I guess I'm the exact opposite, wondering what will happen if the perfect pair of lungs doesn't come for me in time? I'm pretty sure these are all natural feelings, but nonetheless they are kind of stressful to deal with! I mean we are literally talking about life or death matters.

I just started a book tonight called "Joy for Beginners", it's a story about a woman who has a new lease on life after beating cancer. Her and her friends start coming up with ideas that have always frightened them and are going to try to succumb to those fears. I'm hoping it will be an uplifting book because I just finished "A Stolen Life" by Jaycee Dugard and that was pretty heavy, although equally amazing at the same time that she could share her ordeal with such truth and honesty.

Saturday, August 13, 2011

Twitter ...

I am still not completely sure how I feel about the whole twitter thing, BUT since I have succumbed to facebook and now blogging, I feel it was the logical next step!

So please feel free to find me on Twitter, and follow me! I can't promise how often I'm going to use it or what I'm even going to post that isn't already on facebook or here, but WHO KNOWS!

My name on Twitter is: katyCFsurvivor

I'm also kind of obsessed with keeping up with celebrities, so while I am waiting on the transplant list - what's one more thing to add to my daily schedule!

I don't mean to brag but ...

My boyfriend is pretty much the best guy there is. I always knew that Joey was an amazing person inside and out. It wasn't until I started dating him and I got sicker and sicker and I realized that he didn't care. He loves me whether I can run along side him on the treadmill or if the only thing he can do to comfort me is come over and watch TV with me.

I honestly feel like I hit the boyfriend jackpot. I would do anything for him and right now it's so hard because I would love to do little things here and there to show him that I love him as much as he loves me, but my health really limits me. He's studying to become a nurse, and he works almost every free minute at Erin's Isle (the restaurant that we both worked at and where we met about 10 years ago!). When I was studying for my nursing boards he would bring me random Starbucks coffee. I wish that I had energy and stamina where I could just do little things for him like that.

We started dating in April of 2008 while I was still relatively healthy, except for the IV antibiotics 2-3 times a year. We went away to a wedding in Aruba in July of 2008 and ever since then my health has gotten progressively worse. We only had a good 3 months where I was feeling good to do fun things all the time. I jokingly told him that he's not going to know what to do with me post-transplant when I am feeling good and have energy again!

This post is not directly to Joey or anyone in particular, but for those of you with CF who think that there are no good guys out there who will stick by you when things get tough, this is to prove that there are! When Joey and I started talking I wasn't exactly looking for anything. We had always been friends, and I always thought he was really cute and the nicest guy ever and that if he was just a LITTLE bit older he'd be my perfect match. Well a few years later, you realize a few years don't matter in the great scheme of things.

I can honestly say that since I have gotten sicker, besides my family and friends support, Joey has been and continues to be my rock. I cannot wait for the day that I feel well enough to make him see that sticking by me, even when sometimes I sleep for days, will eventually be worth it!

Friday, August 12, 2011

CF DR update

So I had my usual every other week appointment with my CF doctor (now that I'm on IV's and the transplant list, they like to keep a really good tab on me!). Nothing really new except that I am finally going to be set up with an insulin pump, something that has been talked about for a few months now, until the whole getting on the transplant list took precedence. I'm still on 6L of oxygen, except this past week I feel like at certain times I need even MORE than that to feel comfortable, especially if I start coughing and can't catch my breath. I've been having really bad pain sporadically in my chest, I think it's more pleuritic, but nonetheless it HURTS and its kills when I have a coughing attack. I was prescribed Lidocaine patches, which so far are doing nothing! Percocet helps, but I think with the impending transplant they don't want my body to be used to a certain amount so that post-surgery I'll need even higher doses of pain meds. I didn't even do a PFT at the office. I have my transplant appointment next week where I need to do another PFT, EKG and 6 min walk test, so I think that's good enough. My entire body has been aching lately. I don't know why. It's my chest (obviously) and my lower back (I think that's from carrying the 6lb liquid oxygen backpack around whenever I am out). I've been having random feelings lately about what if I don't make it to transplant. I've mentioned it to my mom, but everyone tells me I'm crazy and that it's coming. However, it's a REAL possibility. There are so many people who die waiting on the list. I know that I need to be positive, but some days it's just REALLY hard.

Wednesday, August 10, 2011

Post Transplant Goals

While I am waiting for the call to come I thought it would be fun to start thinking about some of the things that I would like to do when I am recovered and feeling great. I want to challenge myself and do things, whether they scare the living shit out of me or not. I truly want to live life to the fullest and experience as much as life as I can. My sister Christine said that if I decided to do such things as sky-diving, surfing etc. (which by the way are most likely going to be on the list), that she would like to do it too. I'm excited to experience things I have never experienced before, but more than that I can't wait to do the things that I used to enjoy and no longer can. I can't wait to be able to go skiing with my whole family. Now my niece and nephews are old enough to ski, so our family vacation will be so exciting. I can't wait to just work out and push the limits. One thing I have definitely regretted is not being more active with exercise. I would always get started and get in a routine, but as soon as I started feeling crappy, I let that be an excuse to stop, when in reality I should have just pushed harder. I guess that's one of the biggest life lessons I've learned. And for anyone with CF now, who's health and PFT's are still at a pretty good spot - PLEASE, take my advice and exercise your ass off. It can do wonders. Just check out amazing fellow CF'ers like Ronnie Sharpe and Jerry Cahill. A CF friend of mine from clinic has even run the NYC marathon a few times (and not with new lungs, with his original yucky CF lungs). I can't wait to take a deep breath and not have a huge coughing fit afterwards. I can't wait to travel around backpack free (my liquid oxygen backpack - my friends have ever so graciously named me Dora). I can't wait to wake up every morning and be able to stick to my plans because I KNOW I'll feel good. Today I was really looking forward to hanging out with one of my best friends Sara and our friend Aurora who we haven't really seen from HS, but I had a crappy night sleeping, my lungs felt super tight and I just could not get out of bed. I HATE that feeling. I also want to give back to the CF community in someway. Whether it's fundraisers, or volunteering for some of their functions, giving speeches. I just feel like If I get this second chance at life, I want to make the most of it and I want to be someone that people can look up to!

Monday, August 8, 2011

insomnia strikes again

Being that for the last few weeks it seems like I can never sleep through the night, I don't know why I haven't been catching up more on my blogs. I guess that's also because I don't feel like much is going on in my life right now. I don't work. I wake up, I take my pills, do my morning therapy and IV medications, rest for a little, then some more meds in the afternoon, and then the same routine at bedtime with the therapy, IV meds and bed time pills. On monday, wednesday and fridays, when I feel well enough I go to Pulmonary Rehab for an hour and a half, in hopes of gaining some muscle to make my body as strong as it possibly can be for transplant. My good friend with CF Kristy is also in my Rehab class, and I have to seriously thank god that she is. We are the only young people in the program, everyone else pretty much is old and has lung problems due to smoking their entire lives, it's a blast let me tell you!
Next week it will be three months that I have actually been on the list. I know that's not long in comparison to some people and I have no right to complain but for some reason I just thought that my new lungs would be here by now. I have to say my spirits are in a much better place. For a while I was kind of freaked out, not knowing if this was really the right step for me. Now, I am 100% sure that transplant is the thing I need next. I am constantly on 6L of oxygen now at all times, and if I am actually doing something strenuous could use more. I've been putting on some weight, but I am still fitting in my abercrombie kids size 12 shorts haha. My friends, both new and old have all been pretty amazing about keeping in touch with me and trying to get together, which has really helped! I feel like I sometimes have a busier schedule now than when I worked full time! I do have to take it easy at times though because after a day or two of fun, sometimes I need two or three days in bed to recover fully.
I guess all in all, I've realized lately that life could have been easier, but I truly believe that it is the struggles that one person must overcome which makes them the person they are today.
I'm just REALLY looking forward to the day where I can take a deep breath in, not feel pain and start a long, happy future with my amazing boyfriend and give back to my family who has turned their worlds upside down during this whole transplant process!