5k Speed, almost

Wow. Been a crazy eight months. Yep you heard that right -- 8 months.
8 months since a young man in Miami passed away, and by his selfless gift he saved my life. It still is almost unbelievable some times. The idea that my lungs are not my lungs. That part of me is not ME. And that my body works better without ME in it. Weird. Does that make sense?

I dunno. Don't guess it really needs to.

More news on my bionic body :: she dragged her ever-growing ass across the finish line of her very first 5k post transplant this past weekend - The Gr8 to Don8 Organ Donation 8k/5k. Well, it was really the first in about 11 years, so lets just say it wasn't the most exciting run, nor the prettiest, but it was 3.1 miles and I ran (almost) all of it. I crossed the finish line with a mildly embarrassing 48min (pretty sure it was somewhere between 45-48, I didn't look until i had already crossed and remembered they had a big clock posted for time) 5k speed. A far cry from the 20min 5ks from high school, but what can you do.


Organ Recipient 5k run number - 64! (Square root? = 8!)


Official run tshirt!


Runnin the track during the last .1 of the race

I realized half way through the run why I felt so sluggish opposed to the memories of how it used to feel when I ran. Aside from the obvious lack of muscle tone (its a work in progress people), I am enormous. Yup, officially hit the 152lb mark. Through the run I was VIVIDLY aware of the constant jiggle coming from a mysterious place behind me, one that I have never been aware of before. It was my ass. Its finally happened. I have an ass. Don't get too excited, we aren't talkin about a JLo booty...just one that fills in the seat of my jeans. No more frog/old man butt for me! But it has been quite an adjustment. There is just so MUCH of me. I mean, Im not FAT - but it definitely feels that way! I am OVER 30lbs heavier than I was the day of my transplant, and I have NEVER been this heavy in all my life. Learning how to maneuver this weighty body has been a strange, but welcome sensation. Except when I learned that it was partly to blame for the slow go through the neighborhood during the race...

At any rate. I ran. And it was pretty stellar. My donor lungs and my body worked pretty well together. I wasn't breathless at all, so that was pretty fantastic...and thinkin about my donor during that run made me more thankful than ever that he decided to donate his organs and that I was the lucky one to receive them. These bad boys are the real deal!

April is organ donation awareness month. By choosing to donate your organs when you pass you can potentially save the lives of eight people, not to mention the healing of many more through tissue and tendon donation. Be someone's hero and sign up to donate your organs! Learn more at www.donatelife.net or by reading the organ donation/transplantation section of this blog. Even if you don't think your organs would be accepted for one reason or the other - sign up anyway! You never know what can be used. Id love to hear from those who are donors - new donors and previous donors!



8 months, 8 lives that can saved through one organ donor, race number 64 (8x8), today is April 8.... I like 8s. 8 is a good number.... :)

Thanks again for all the continuous support! Remember to recycle your parts! :)

Much love...
Erin

Lotta air in these lungs :)

Just another super quick update:

Most of you probably saw my FB post about today Dr visit. I went to see my CF pulmonologist for the first time since my Tx. Dr Layish is the one who kept me going the years leading up to the surgery. He def had a difficult job! If it weren't for him I wouldn't have made it to Tx, and wouldn't be doing as well now. I got to meet with my social worker, nutritionist, and Dr Layish and they are all super happy with my progress! Last time they saw me was back in March before I even went through transplant eval and my lung function was at 27%. Between that visit and my eval it dropped 6% in about 3.5 months! Today -- 107%! An 80% jump baby! And my weight is at 141 - holdin steady at "water buffalo" status. :)

Good stuff...




Me and Dr Layish - best CF dr ever :)




Today's PFT results! Woot!!



Much love...



Erin

It's good to be home...

What a week. Well, last TWO weeks I guess. We have officially been HOME for two weeks now. Sorry it's been a while since my last post, but its been a little crazy since the move back. Tryin to get my house back in order, tryin to get through the tons of thank you notes I'm writing, and loads of other stuff, has kept my time for blogging to a minimum!

My first day back was a little surreal. I kept walkin around the house as we moved our stuff in thinkin, "I can't believe I'm here. More than that, I'm here and I can breathe!" It's crazy to think that the last time I was in this house I was circling the drain. Sittin in my chair in the living room is weird. (Yes, I have a "my chair" - no, Chris does not LOL) Before, I had been camped out there for days. I was strapped to oxygen 24 hours a day and could barely get up to fix something to eat without struggling HARD. I was seriously miserable. I'd be posted up in the living room hurting, wheezing, coughing up blood and puffin on my breathing machine half a dozen (sometimes more) times a day like it was my job. I feel like I should be surrounded by a variety of medical equipment, but that's no longer necessary. Weird.

But awesome.

Kellyn, Ronnie and Mabree came over last weekend. Mabree had been given Sea World tickets last Christmas by mom and dad and since I was feelin AH-MAZING I got to tag a long! Do you have ANY idea how awesome it was to be able to walk around a park of that size and not be phased by it at all? To not hafta take constant breaks to catch my breath? It was so much fun and I was so glad I was able to go and see Mabree's reaction to all the whales and other animals, and to be able to ride the Journey to Atlantis log ride with her - her face in the picture is PRICELESS! I wasn't able to ride the awesome lookin roller coasters yet, just the non-jarring log ride that gets you SOAKED, but as soon as I'm cleared for that I'm goin back. Dad got me a Fun Card (pay for a day come back all year) soooo as soon as I'm done healin I will be ridin the Kraken.



Mabree is so stinking funny!


Still feelin pretty amazing - home spirometer reading the other day showed my FEV1 at an all time high for me - 107%. I have NEVER had lung function this high before EVER. Not even when I was at my healthiest and running miles a day during track/cross country or playin soccer or basketball. I didn't even KNOW your lung function could get that high. And if I had I would have NEVER believed I'd ever reach it!

Weight is maintaining right at 140. Next goal is to put on 10 more pounds of muscle weight. I also may have mentioned this before, but I gained an inch of height. Well not so much gained, just got back. Last few years I dropped from 5'11 to 5'10. I was in so much pain and had such a hard time breathing that I had started slouching and getting all hunched over. Well I'm standing and sittin straight now so the AMAZON IS BACK BABY! I've had to buy some new clothes because my pre transplant body was shorter and much skinnier than I now. Particularly my pants. I had gotten to literally havin to SHOVE my self into my jeans. (Never thought I'd EVER have THAT happen!) I'm talkin circulation issues here people. But my shirts aren't fitting great now either - my arms (and other things north of the belt line) have gotten larger as well. So unless the clothes were on the big side before its just not happening. I plan on goin through the closet and dressers this week and makin some serious donations!

I went to the Central Florida CF Support Group education day yesterday and spoke to the participants about my transplant and this blog. It's safe to say my public speaking skills are seriously lacking. The entire time Im tellin my story, all thats goin on in my head is "Don't cuss at these people. Don't say anything ridiculous or inappropriate. Seriously, don't." I don't RECALL any major slip ups, but with my prednisone/prograf brain I honestly can't really remember. So any of you reading this today that were in attendance yesterday I do apologize. Not only for the poor delivery, but for anything absurd that may have escaped my mouth - I did try. Being a motivational speaker is officially off the table as a possible career choice. I'll stick to the blog.

Tomorrow I'm starting back to work. Part time of course, but I'm ready to get back. I'm also gonna be goin back to school in the Spring, so I'll be workin on gettin all that stuff worked out this week. Pretty excited about it, but also a little nervous. It's been a while since I was last in college and well, I wasn't exactly success story (that's prolly putting it mildly). So pray for me people. This should be interesting.

Oh and for those who may have missed my FB post last night, we had people over to our house and I cooked a ton of food. It was super fun to finally get back to cooking. It's always something I love to do, but - like everything else - had become nearly impossible for me to do much of. I decided to try my hand at frying shrimp for the first time. Spent like an hour dredging these dang things, dippin them in this homemade beer batter and frying them up. My house REEKED. I am not a fan of ANY seafood and was not happy that my entire house freakin stunk. But they cooked up quick, looked like (what I thought) they were supposed to look like and honestly I was pretty excited that I got them done without some sort of grease fire or severely burning the shrimp. I set them out right before Chris came home and he beelined right for them once he walked in the door. It was at that point he informed me that, while they looked great, they had been battered and fired with the shell and claw/leg thingys still on. I was pissed. I don't eat shrimp, much less ever tried to cook them so I had no idea I needed to do that, especially after I asked the dude at the seafood counter for like ready to cook shrimp cause I didn't feel like deveining a bunch of nasty shrimp poop. Well apparently THAT didn't happen, and my ignorance of all things shrimp didn't put me in any position to notice any thing was wrong. So needless to say those shrimp found their way to the trash and I was furious. I have decided I am giving up on cookin all things seafood. I tried to cook Salmon for Chris and I last year and that was also a complete fail. So I'm done. I gave it the ol college try. I'm stickin to what I know from now on.

Seafood - 2 Erin - 0


So there you are - pretty much up to speed now. I'm goin to end here and go enjoy my Sunday Funday, which will consist of cleaning and other house stuff today. We really know how to take advantage of our day off together don't we? Hope you all are well, and as always, big thanks to everyone for continuing to pray for us and for stayin on this journey with us!

Enjoy the day folks! :)

Much love...



Erin

Life is dull...and Im lovin it.

I haven't had days like these in a long time.

Days where my husband and I wake up and have the opportunity to spend the entire day together. Where we can take our time gettin goin in the morning, then head out for breakfast together (our recent breakfast place of choice -- Waffle House). Days where I feel good enough to be up for anything! Days where we head to the beach, a mere fifteen minutes from our apartment, to get in my workout for the day.

You heard me. I'm working out. And I'm doin it on the beach.

To most of you this may not seem something worth making a big deal over. Definitely not something worth dedicating a blog post to. But for me? This is a huge deal.

Pathetic, isn't it?

My life pre-transplant was undoubtably pathetic. As I have mentioned before, getting up to walk to the bathroom was a workout and cause for a ten minute recovery session which consisted of a breathing treatment and suckin on oxygen, occasionally followed up with a thirty minute nap. I am not kidding. Needless to say, getting out and spending the day with Chris wasnt really in the cards.

Our life had been reduced to him working 10-12 hour days, while I laid around either in bed or on the couch strapped to O2, doing 4-6 breathing treatments throughout the day. On the random occasion I might scrape up enough energy to drive the 4 blocks to the grocery store, at which time I was reduced to scootin around on the motorized shopping carts (which, if Im honest WAS sorta fantastic...I can't help it. Feeling good or feeling bad - Im seriously the laziest person on Earth and up until I was forced to, it was always a dream of mine to use those motorized shopping carts at the store....my day had finally come. Yeah...pathetic remember?)

When Chris would get home I would be too exhausted to do much of anything. Which really just upped the pathetic quotient since I hadn't actually DONE any thing all dang day. How I was even remotely tired is beyond me, but I was exhausted 90% of the time, and in tremendous amounts of pain as well. Occasionally we would go out to dinner, but not often. Usually it would just be he and I laying around the living room watching tv, night after night. I was miserable so I can't even say we enjoyed each others company. We were just existing...it was pathetic.

But now - talk about a 180! Im fighting pain and discomfort while my body heals (and Im getting pretty impatient with it to be honest. How long does this crap really need to finish healing anyway, geez!). This past weekend I closed my foot in a car door of all things, so Im walking with a limp which is making other parts of my foot hurt. My sleeping patterns are all over the place thanks to the prednisone Im on for immune suppression/antirejection. And if youve had a chance to catch my latest Facebook posts, youve had the opportunity to see the face explosion I am currently fighting. And by face explosion, I mean the fattness of my face -- thanks again prednisone!

But still, a180! Did you know that its been over ten years since) I was able to walk on the beach? Oh Ive been to the beach plenty of times since then, but actually getting out and WALKING on it? No way. I could (barely) get myself onto the beach, just enough to get to the spot for us to set up, then I would plant myself in a chair under and umbrella for the rest of the time. Only time I even move would be to go to the ocean to cool off. But now, I can walk. Chris and I are enjoying our opportunity to just BE together, and we have taken that opportunity to the beach.

Now dont misunderstand - this isnt a relaxing, afternoon under the sun! Because of the meds I am on, I have to limit my exposure to the sun and canNOT get sunburned. Between the sensitivity it causes to the sun, which could mean I would burn much easier, the immunosuppression increases my chance of developing skin cancer SIGNIFICANTLY. So for now, while my med doss are so high, I hafta be super careful. Sunscreen, hat, fully clothed, etc. Usually we try to go earlier in the AM or later in the afternoon when the sun isnt as strong, or we choose a cloudy or rainy day. But being able to get outside, and WALK and not get tired AT ALL....its incredible. Every time I go out there I just keep repeating "I cant believe I can do this!" Im sure Chris is wishing I could think of something better to talk about, but for now I just cant. Its completely unbelievable to me. And a welcome change to the oh-so-boring walks I usually do on the treadmill.

We have a route we do every time - park at 16th street, then walk the beach all the way to the pier and back. Total distance - 3 miles. Time we take to walk it - 1hour. So I am officially walking a full HOUR at once, never getting winded or tired or anything! And THREE MILES! Last time I traveled on foot 3 miles was during cross country in high school. Craziness...

So between my working out and my weekly appointments at Mayo, I am really doing nothing else other than healing. So, like the title of this post says, life is pretty dull. Well, I guess to you all its dull. And I guess its dull to me in terms of the fact that things are actually going really well, and my life isn't in a complete state of disfunction and pain and misery. Just call me McDonalds, cause Im lovin it! ;)

My last visit to Mayo for PFTs showed they were UP again (whoo hoo!) to a whopping 86% of normal. EIGHTY SIX PERCENT PEOPLE. Less than two months ago I was circling the drain at 21%. That is a 65% increase! And I can feel it all the way to my toes when I breathe. Its incredible. I cant wait for next week for my next PFT. If it is any higher Im gonna freak out. I just can't imagine it being any better, but they keep telling me it will still go up, prolly for another few weeks and then it will level out. If I get to 100%...Im not sure what Im gonna do, but its gonna be drastic and I'll prolly get it on video. Oh and Im gaining weight finally! Today's weight was 135.5, the highest Ive been in years. Havent hit that high since prolly two or three years ago and then it was only 132, and very short lived, as I got sick and dropped 20 pounds almost immediately. Im ten pounds away from high school weight of 145, and Im hoping to put that on muscle-wise...my face is getting PRETTY round and Im sure most of it is the prednisone Im on, but apparently I ate 6000 calories of food yesterday (appetite stimulation is another side effect of the prednisone - finally a side effect I actually dont mind!) soooo the fat face could just be that - FAT. Who knew I was capable of fat? Not me! So stay tuned...fat girl walkin! (and hopefully soon, runnin!)

Here are a few pics for those not following me on FB...you can see the fat-face transformation pretty distinctly...its gettin quite ridiculous really.


Beach day pre-trans with Chris


REALLY enjoyin myself during the hospital stay the week prior to my transplant...had no idea my life would change so dramatically just a few days later!


A few days after being discharged from the hospital post-transplant...you can see the full face beginning to emerge...


Chris and I on the beach before one of my work-out walks...yup its fat face city over here...honestly I look like a chipmunk.


And finally, the latest and greatest. My cheeks have officially surpassed the boundaries of the rest of my head. They have a life of their own. Ridiculous is the only word to describe these things. They could blow at any second.

As my face and body continue to expand and my lung function continues to increase, I'll keep you updated...I'll have to cause if I dont you may not recognize me when I finally see you in person again. Lol!


Much love...
Erin

Today has been quite a day...

Last night around midnight I began coughin up a lot of blood. I do this from time to time, sometimes its next to nothing, other times its like something from a horror film. Well last night was somewhere in between, but since my lung function is down in the 20% range, we decided that it would be a good idea to head over to Winter Park Memorial Hospital where my CF specialist is and get on some IV meds and some pain meds. For those of you who have never coughed up blood, it is a terrible drowning feeling coupled with a terrible ripping pain in your chest everytime you cough...unpleasant doesn't even begin to describe it.

After close to NINE - yes you read that right - NINE HOURS in the ER I finally made it up to my room. Soon after the usual visits from my doctors to discuss the plan of action, my Aunt Patti shows up to check on me. After hanging out for about an hour, she gets up to leave. As she does my phone starts ringing. As I was saying goodbye, I decided that whoever it was could wait and I would call them right back. Once she left I checked my voicemail - a call from Mayo Clinic.

Assuming it had something to do with scheduling more appointments, I was in no hurry to listen to the voicemail. I decided to go a head and listen anyway just in case and was stunned by what I heard.

The voicemail was from my lung transplant coordinator, Kelly Norman. She was calling to inform me that they have recieved all my test results back from my recent liver evaluations. She went on to say that based on those results, they have determined that I am NOT A CANDIDATE FOR A LIVER TRANSPLANT!! Did you hear me?? NOT A CANDIDATE FOR LIVER TRANSPLANT!!! Finally, the first piece of good news in the last two weeks! :)

Kelly also mentioned that since I have completed the lung transplant eval and that I was determined to be a candidate for lung transplant, she will be completing the paperwork required today and that she will be giving me a call mid-morning tomorrow to let me know my allocation score and where I am on the list for my blood type.

Wow. I am in shock right now. The last few weeks have been so tiring and frustrating not knowing what is going on and when it will be happeneing. Now, all of the sudden I am less that 24 hours away from possibly being officially listed for new lungs. And who knows, I might be towards to top of the list! This could all happen in a matter of weeks! I means it could just as easily be two years, but the fact remains - I finally have a direction! Of course this means MORE waiting, but its a different kind of feeling with this waiting. This waiting feels like the kind of waiting that can save your life...not the kind of waiting you do to pass the time before you hear the next hideous procedure you hafta do before you can ever get any real answers.

I feel like such a weight has been lifted from my shoulders. Dont get me wrong. I was ready and willing to do whatever I needed to. But knowing that atleast ONE part of my body, even though it is scarred and not 100% on its game, is still doing what it needs to be well enough that I get to keep it! This also means a less invasive surgery, and much less impossing scar (not that im not used to THAT already)...but its just really nice to get some good news. Especially as I sit here alone in my hospital room hooked up to oxygen and IV meds, downing cup fulls of pills, and watchin bad tv reruns.


Thanks for all the thoughts, love, and prayers you all have sent up for me, my family, and for my little 'ol liver....we thank you! Keep it up - it works!! Thank you Lord!

Much much love...
Erin