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

First minor setback...if you can really call it that

So yesterday was sort of an annoying day.

Most of you know that I had some tests and things done Monday. Blood work, chest xray, bronchoscopy and my first pulmonary function test post transplant. During that visit I got great feedback on my initial results: bronchoscopy looked clear and lungs were looking "better than they should be" at this point, O2 stats were 99% on room air, blood pressure was spot on and chest xrays looked "great." And while I felt that a 54% FEV1 score was LOW (well it was high compared to my 22% pre-transplant), they assured me that it was right where it needed to be for this stage in my recovery and that it will only be going up. I had them assure me of this about 10 times before I left the room, but they were all very positive and excited that my levels where were they were less than 2 full weeks post transplant.

All I heard =  that there was room to improve.

Honestly I can't imagine it feeling any better though. At only 54% FEV1 I feel like I'm at 100%. I think any more lung capacity and my entire body will just explode!


So Tuesday was supposed to be a slow day. Just a routine visit to go over my blood work and biopsy results from the bronch. And well I guess it was exactly that. Just not the results I was exactly hoping for.

Before I go on, you people hafta understand something about me:

I am completely mental. Its true...and for all of you thinkin I'm so strong and such an inspiration - well, lets just say I'll be prayin for you.

I am your typical overly competitive, ridiculous high expectations type who suffers the likings of a complete mental breakdown if things aren't progressing exactly the way I think they should or want them to. Some might call it stubborn, some call it determined...I call it mental.

I call it mental cause I allow it to utterly consume me sometimes. I am a complete control freak and knowing that you can do exactly what you are asked to do, maybe even more than asked to do, and this whole thing still might just go to crap overnight, causes me a level of anxiety few ever achieve in
life.

How I tricked that pysch guy into passin me for this surgery was a sure act of God. Now, I'm not one to question the will of God too much...I've seen too many times how things so inexplicable have turned into something so beautiful. Too many times. Now, just cause I don't question it, doesn't mean I understand it.

Now being a complete basket case when it comes to controlling my life and being someone who doesn't question the will of God has not, is not, and will never be an easy thing to do. I am in a constant battle of wills with these to aspects of my personality. If you've ever seen me in action you'd recognize a very distinguishable "Dr Jeykll/Mr Hyde" scenario happening. However, I am currently trying to master the controlling part of my personality and let God take this whole thing over completely. I've seen how He works and how I work. And as much as it pains me to admit...I suck. And after all I've been through, I can't afford to suck.

That all being said, back to yesterday.

One good thing (as uncomfortable as it was) that I wasn't anticipating to happen for another week happened. They went ahead and removed half the staples from my incisions and the sutures in my sides from the chest tubes. Not a very pleasant experience to say the least, but not the worst since all this started two weeks ago. And while today has been uncomfortable in those areas, I'm hoping that tomorrow I will be feelin the relief that comes with havin some of those out. So one good thing. But then there's always the bad thing right? (Well maybe not always, but generally enough that I feel comfortable following the "expect the worst, hope for the best" mentality when it regards my attitude) At the appointment with my transplant pulmonologist and coordinator, they informed me that based on the lung biopsy results from the bronch the day before, while we weren't culturing any infection (GREAT NEWS), they did show some signs of mild rejection.

They were quick to assure me that MOST transplant patients experience mild rejection within the first 30 days of transplant as your body is trying to reconcile what exactly is going on with this foreign THING they've just put inside you. Thus the reason for the super high doses of immunosuppressant/antirejection drugs they're pumping through me daily, and the reason they require patients to remain close to Mayo after transplant for atleast 3 months. They are able to constantly monitor my status and adjust my medications as immediately as possible to ward of infection and rejection that can be deadly. They assured me that mild rejection was something they don't even like to tell their patients about because in honesty, your body has been trying to reject those organs since they went in, and will always be trying to. They weren't made for my body. They're basically on loan. My job (and my doctor's job) is to make their stay as pleasant as possible so they'll want to stay as long as possible.

Well knowing all this is great in all, but remember what I said about being mental. Yup, knowing all that means little when you're me.

I, of course, fight it as much as I can, but its not long before I am up, pacing through my exam room muttering things to myself like, "ok lungs, don't screw me on this," while my pulmonologists decides what adjustments need to be made with my meds. Basically doubling my Cellcept and bumping my Prednisone up 10mg a day. Great. Cause my brain wasn't mush enough already. Bring on more Prednisone! He also prescribed a one time bolus dose of Solumedrol that I did by IV yesterday at Mayo.

So hopefully that will bring these bad boys back to happy, and quickly. One of the lucky things about catching this stuff early and making the necessary changes so quickly means I haven't felt any different. Again, keeping these lungs happy is my only goal until they decide they like where they are and will quit tryin to bug out on me on their own. I realize they could have gone into a more hospitible environment than I can generally provide, but I hope they just give me the chance to try!

Remember, lungs, I didn't pick you for me. God, did. Go with that.

So that's that for now. No appts today or tomorrow, but back to Mayo Friday for another chest xray. Today will, hopefully, be that slow day I was hopin for yesterday. May run a few errands with mom and Chris, but mostly just layin back and restin today. Like I said, I'm pretty uncomfortable today, so lots of activity prolly isn't happening. My cousin Joel and his roommate Mike are comin over tonight for dinner, so that'll give Chris an opportunity to grill, which he never passes up, and allow us to feed two poor college boys who's kitchen cabinets would put a homeless man to shame. I'll never understand Ramen Noodles...and one's willingness to buy them in bulk. Ugh.

So I'll do now what I do best - beg for your prayers! I've seen the power of prayer you people can generate, so I'll shamefully ask it of you again. Rejection and infection. I'd like none of either please. Thank you all again for your constant support...I'll never stop saying thank you for that.

Much love...



Erin