Spoons - Revisited

I was talking to Cameron the other day about my blog and have come to realize that my favorite blog entry, the one I always get the most comments about, the one that was the most personal to me was the one where I referenced the spoon theory. I wrote it about a month before my lung transplant and I was re-reading it tonight. Wow, what a difference a new set of lungs makes!

I said that on average, I had 10 spoons a day. Now, I have an easy 20 on a bad day. A BAD day... I don't think I could even comprehend that when I wrote the original! A bad day for me is when I am not getting sleep because the meds have kept me awake, the meds have upset my stomach, exhausted because my EBV titers are high from the donor lungs, but all in all, I still can breathe, I can run up the stairs if I wanted to, and the amount of care that I need is next to none. The most help that I need to take care of myself now is the occasional preparring of meals or running upstairs for me to fetch something. And that really, is because I'm too lazy to do it myself, not because I can't do it.

It's an amazing feeling to take a look back and see how far I've come. I've come so far that I'm getting ready to move out on my own... something that I wasn't sure if it was possible pre-tx. I'm making plans to travel down to Knoxville to visit my college roommate, Stefanie. Plans that are WEEKS in the future, not DAYS. I was always so scarred to make plans before. I never knew how I would be feeling, if I'd be on IVs again, plus... having to lug all of that equipment around. Seesh! Even when I went to Cameron's family reunion, I only had a duffle back and another small extra bag for toiletries - leave it to being a girl to add bags to my packing :)

Anyway, for those who would like to know... a typical day for me:

I wake up at 8am and take my morning pills. Sometimes I fall back asleep, but most days I'm up for the day. I sit around, sometimes do some house work (or, atleast I did until my dad lost his job and took those over to keep himself busy).

Come lunch time, either Dad or I make lunch for the both of us. Right now we've been trying to sit outside with the dogs and eat it if it's not too hot.

Then I run my erronds or do some more sitting around or sometimes, exercise... depending on how the weather is.

Then comes dinner and hanging out with the family and Cameron. 8pm I take my evening pills. Then I hang out with everyone until it's time to go to bed.

Once a month I do an inhaled antibiotic in the afternoon, but that's the only extra medical thing I do.

That's it... that's my post-transplant living. You have to admmit, compared to all that I had to go through on a daily basis before, it's pretty sweet living :)

A whole lot of Normal

So my life has been busy and boring, all at the same time!

Not a lot going on since my last post. Just the basics, a few doctors appointments, hanging out with friends, having a good time, and then there's the trying to find a home for Cameron and I, as well as starting to freak out a little about school.

Cameron and I had found a house, and we both were head of heels in love with it. Then the mold inspection came back... oh boy... so now we're heart-broken and shopping again for houses. Unfortunately, all of the buffered time we had before I started school again is gone, so we're under a deadline to find a house now. The last thing in the world that I want to be doing is moving while trying to get use to going to school again. ick.

And while I'm talking about school, I am about as nervous as one can be about going back. I've been out of school for about, oh... 3 years now. And it's not like I was out of school and working during that time, well.. I was working, but in a completely different sense of the word. My job was taking care of myself and that was almost too much of a job for me to do by myself. Thank God for great families :) But anyway, I can already feel the anxiety building with school approaching. I have 2 months left before I start still... and my personality is to take the next 2 months and fret over it until the week before, and then I go into full panic mode. After I get through my first day, I know I'll be fine... but it's just getting through that first day. blah.

But that's all that's been going on. As soon as I have anything else going on, I'll be sure to post it, but until then.... <3

Just a normal update

I really am going to try and post more often. It helps keep me a little more sane :).
So since my last update post, I've been busy! Mid-April Cam and I went to Indianapolis for the midwest CF consortium for social workers and nutritionalist. I was part of the panel discussion and got to meet some really cool CFers. We were all post transplant and I am finding, the further out I get from transplant, that I am starting to crave talking to others who are in the transplant know. I also got to meet Tiffany Christenson who wrote the book "sick girl speaks!" Which is fabulous! The book is neither about CF nor transplant, but references them both throughout.

I also met Sam, a fellow Cincinnatian, and her parents. All were so nice, and I felt honored to be on the panel with each of them.

Next was the CF walk. My team wasn't as successful as years past, but I walked most of it this year, and that's what really mattered to me!! It was a beautiful day and Sam got to cut the ribbon. I was so excited for her. Her dad took a picture of the two of us, and I'm axiously waiting for them to put it on facebook :)

Finally, Cameron and I are house shopping, so I've been a little busy! It's a fine balance betweeen what we can afford and what we're willing to put into a house. A lot of the houses we've looked at have been "handyman specials" which is kind of frightening :).

Oh! And I saw Dr. Trapnell last week and my lung function is at 70% - the highest it's been post-transplant! I figure if I really start trying to work out, I can get it higher. Maybe this is the motivation I've needed all along, especially since dance is coming to an end this weekend. Come see me in the recital if you can! :).

Growing Up

Over the last year I've run into people that I haven't seen in months/years. It's almost always the same conversation.

"Wow, a double lung transplant?! I'm so glad you got that, you were so sick as a kid!"

Maybe it was just me, but I never felt sick as a kid. I played just as hard as the boys I grew up around (there just weren't many girls on my street) and I can remember occasionally having to stop and cough. That's it, just a cough here and there. In fact, now that I have my transplant, I constantly am comparing my life to when I was about 12. Health-wise that is. I hope I've at least matured a little since then ;) but to call myself sick while I was in grade school, still to this day, doesn't make sense to me.

For a CFer, I was healthy as a kid. I didn't know many other CFers growing up. The only other kid I knew was Danny, and that was strictly because our parents worked together. I knew he was typically sicker than I was, but I just figured that was because he had a more severe case or that he just didn't take care of himself like my parents had made me. But still, I never FELT sick. Mentally, emotionally, physically, I felt like a normal child. I KNEW I was different, only because how many 7 year olds have you seen grab a handful of pills and swallow them in one swallow? How many 10 year olds have you met that were voluntarily beaten by their parents each morning, sometimes twice a day (haha, CPTs, not thrown around)? Of course I complained about these things because I recognized them as "not normal" but never once did I ever sit down and think "it must be because I'm sick". I was raised to think "I do this to NOT get sick" and I think that made all the difference.

I know this now, but I think it made me push harder to do the physical things I loved to do, like dance. I seriously danced until I was about 16 years old, then I decided to get a job and there just wasn't enough time in the day to do dance, work, and keep up with school. It's one of my regrets. I can't help but think that if I continued to dance, if I kept exercising seriously, if I didn't hang around all of my friends who smoked (most of which have quit now and I'm glad I have them all in my life, regardless of their choices) that I could have postponed the transplant process. Maybe I could have gotten out of school during the 4 years, instead of taking so much time off because I just couldn't physically get to class. But these are all "what-if's" and don't matter.

Starting during the second half of my high school years, I began to get sick. I held on as tight as I could to a normal life... which is so common in the CF community, I'm now finding. We cling to normalcy, we crave it. We want it so bad and there isn't anything anyone can say to change our minds. It makes us fighters, warriors in life. Many of us experience things that most people will never come across. We're stubborn, but some of the most loyal and caring people you'll ever meet. Talk to a CF child and most of the time, you'll feel like you're talking to an adult. We grow up quick and we learn the medical field just as fast. Making decisions about feeding tubes, insulin, IV antibiotics/ports/PICC lines, GI surgeries, lung transplants, bronchoscopies, sinus surgeries, and whatever other problems arise all become second nature. Here's the problem, here's a couple of solutions, which one are you going to pick? Doubt constantly nags the back of your mind that you're making the right decision and that there won't be any further complications from the choice you made.

As a child, those were my parents problems. They tried to let me be a kid for as long as I could. As I grew older, the decisions fell more on me. I grew up quick, but never as quick as when they first brought the idea of transplantation to the table. I went into denial, through all the stages of grief during the waiting process, but am so happy I made the choice that I did. I'm alive today because of that choice and because my donor's family said "yes." I am almost certain I wouldn't be alive today if we both hadn't done what we did.

Wow, I need to post more!

SO I guess the old adage holds... no news is good news!

I went back up to Cleveland on March 15 and 16 to be rechecked for the acute rejection they found in February. Cameron and I went and made a little vacation out of it :) We went to the Science Center which was geared toward little kids, but we loved it all the same. Then we went to the Rock and Roll Hall of Fame. I'd been meaning to go there since I first went up to Cleveland almost 2 years ago, but I've been and it was awesome! That Friday I got the call from Cleveland saying that the rejection had cleared... so.... I'm done with biopsies!!! Well, unless something goes wrong, and I've decided that it's not, so I'm done :p

Kelly's had 2 dance competitions and done wonderfully at them. Cameron and I have done some running around, getting dinners with friends and such. We're really trying to find a place to live now since June is coming closer by the minute!

On April 2, I had my g-tube site stitched up and my port removed, so now I'm as normal as I'm going to get :) I got back to Dr. J next monday to have things looked at, but in my opinion, it looks great!

Oh, and on a little side note, I'm officially registered for classes at University of Cincinnati! My class for the summer starts in July and it's a literature class... we'll see... I have to take it to complete my gen.ed. requirements. Wish me Luck!!