SIX MONTHS....

So its been a while since my last post and I apologize. But I mean come on -- did you really think I was gonna be sitting around my computer when I can get out and LIVE now?

Unlikely.

Don't worry though peeps, I haven't forgotten you. With that in mind I invite you to celebrate with me

SIX MONTHS POST TRANSPLANT.

Yup, that's where I am at today. I honestly forgot about it. My six month anniversary was actually yesterday. But me being the incredibly busy and oh-so-important person that I am was too busy to think about it. Then when I remembered I felt like a total shmuck. *SIGH*

How in the WORLD did I not even think about that yesterday? I thought about it a few days ago. So why in the world that on the DAY that marked 6 months on a completely new life did I go the entire day without even mentioning it or anything?? Geez...

Oh well, nothing I can do about that now. Other than celebrate it today, and I think that'll work. I mean I was TECHNICALLY not breathing on my own until the first anyway...sooo yeah, we'll go with that.

But I digress.

So, you may have seen if you follow me on FB that 2 weeks ago I had my 6 month follow up appointment at Mayo. I was honestly terrified. It have been three months since my last bronch, xray, PFT, etc. But, luckily, after all the usual mess, plus an MRI of the abdomen (checkin on my liver), everything came back and I am HEALTHY AS A HORSE!! :) Blood work looked great, Xrays were clear, MRI of the liver showed no change, PFTs were up to 111% and my bronch showed NO INFECTION and NO REJECTION!!

Relief...sweet relief.

I mean, I do a lot of vital stat taking, monitoring of my spirometry levels and such everyday. Plus blood work once a month. So you'd think that if there was anything going on I would have a vague inclination right? Well, that's the idea with all that monitoring atleast, but I mean lets be honest - I'm freaking paranoid, and not exactly the most optimistic person in the world. In short -

I'm waitin on the hammer to fall. For the shit to hit the fan. For everything to go to hell in a hand bag....whatever little phrase you associate with everything falling swiftly and completely to crap.

I try not to. And usually I do a decent job. But atleast once a day I feel a little pain in my back or chest, have a tickle in my throat or just feel odd. Aparently these things are all normal and a part of the healing process. But still. I don't like it. It freaks me out and I immediately wanna go to the doctor and have them do a full work up to make sure I'm ok.

I am a basket case, I swear.

But that's just part of this I guess...and I knew it would be. And trust me, I wouldn't change it for anything in the world. Just something else to get used to I reckon.

Aside from all that though, things are going pretty smoothly. I am workin on getting ready for my very first 5K race in over 10 years. Yup that is happening like next week. Needless to say I will likely be WALKING most of that, but I mean hey - walking 3.1 miles is HUGE compared to what I was able to do...which was little more than a walk to the bathroom. So, I'll take it.

I am also planning on 2 more 5Ks this year (maybe more, who knows) -- one in April, one sometime in the fall. So I am hoping that by the last one of this year I will be running most if not all of it -- and not like a pathetic run. Like a semi-respectable run.We shall see I guess...

I'd like to take this opporutnity to send up a big THANK YOU to my donor. Thank you so much for taking such good care of these bad boys. They are amazing. My life is amazing. I am so glad you were my donor -- whoever you are...

So here's to a new year, new lungs, new health and new adventures..... I'm ready. BRING IT ON. :)


 

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

Three Weeks Post Transplant...

Well, its official.

I am three weeks post transplant. And so far - all is well.

That first week out of the hospital was pretty packed with meals out, trips to different stores to get things here at the apartment set up, and getting things I'll need for my rehab/recovery. This week was relatively quiet. A few short trips to different places, a few visitors - but mainly just a lot of time resting. I'm still fighting quite a bit of discomfort so there were a few days the pain got the better of me and I honestly didn't feel like doin much.

But then there were days like Saturday where we spent a few hours at the Riverside Arts Market near downtown.

Have I ever mentioned my slight obsession with farmers markets, flea markets, and just about all other kinds of "markets?" Well, lets just say its significant. It could be 100 degrees outside or hurricane force winds blowing and I'm goin.

I love goin to markets where there is a blend of produce, art, locally made cheeses and baked goods, jewelry - anything unique or hard to find outside of the market grounds. I love talking to the vendors. They are always so passionate about what they bring. One of my favorite vendors from Orlando, Argyle Gifts, was actually up here in Jacksonville this past weekend and I was so excited! I've purchased quite a few things from them over the years and I always love catching up with them to see their newest pieces. The specialize in creating jewelry, candleholders, wind chimes and other items from old silver serving peices. They frequent estate sales, thrift stores, garage sales, and buy online silver from all over the world, some new, some hundreds of years old. One of my favorite pieces if a baby spoon ring that I literally wear everyday. This past weekend my mom purchased a pair of earrings made from silverwear that had the most beautiful pattern on it. I can't remember exactly what he called it, but apparently it was the silver pattern of King Edward (?) before he abdicated the throne for some reason. (sorry I don't know my history LOL) Apparently, once he abdicated the throne they sold the pattern off and it began being reproduced, but not for royalty anymore. Or something like that. So, its got some cool history, even if my understanding of it is sorta iffy. Regardless, they are beautiful! And super unique - yay!








So after browsing the market, Mom and I buying some fantastic spoon jewelry, Chris loading up on locally made honey and a variety of locally made beef jerkey, we headed back to the apartment. Later that evening we had what my family affectionately refers to as a "Fam Jam" which basically is anytime more than about 3 of us get together at once. This evening, two of my cousins, my cousin's roommate, and my friend Amanda from Orlando came over for a spaghetti dinner. It was so much fun just to hang out, eat and relax for a while. Later that evening the boys left to head out for a few (much needed on Chris' part - bless him) beers, while Amanda stuck around the apartment and caught up.

Speaking of Chris, I want to take this opportunity to brag about my husband for a minute.

As most of you know, Chris and I have been together for going on 13 years  (5 years married this May). It wasn't long after we first got together that Chris found out about my cystic fibrosis. It wasn't something I kept a secret or anything, but it wasn't something we discussed a lot either - mainly cause I was so healthy it really never was on either of our minds much. It wasn't until college when I started getting sick that it became something we had to "deal" with. I'd be lying it I told you I wasn't sure how our marriage was gonna pan out early on. Not because I didn't love him, or doubted his love for me, but when your dealing with a chronic, terminal illness...well, it makes things difficult to say the least. Knowing that you or your spouse can/will die because of this illness at some point, and not knowing how soon/late that's going to be makes finding a balance tricky sometimes. It wasn't long after we got married that I could no longer work fulltime because of my constant illness. Going on disability at age 24 was humiliating for me. I felt like a huge drain on my family, my husband...everyone. I could work part time - at best - and my ability to be a great "housewife" was seriously lacking. For the last 4 years or so I have been plagued with guilt over the fact that our relationship felt SO one sided. Chris works 10-12 hour days almost everyday, rarely ever taking a day off. Anytime he takes a new position somewhere he goes through a process of making sure they offer wonderful insurance (for me mainly, since he hasn't been SICK in about 7 years), that he is guaranteed XX amount of pay to make sure that he is able to pay for ALL of our bills, and that he is withing XX miles of our house so that if he needs to get home to help me, he can get there quickly. When he comes home from his long days at work, he's the one that takes care of the dog, takes out the trash, vaccuums the house cause I physically can't, always helps me make sure I have my oxygen in whatever room I want to be camped out in, brings me drinks and food cause I am to short of breathe to make it to the kitchen to get it myself. He does most of the laundry and dishes. And hardly EVER complains. Don't get me wrong...he doesn't do it all with a smile, but I don't expect him to. Hell, I sometime WISH he'd be more upset about it. Cause let's be honest...I don't know if I'd be so nice about doing all that. I'm just not as selfless as he is, and thats just the truth.

Take the past three weeks. Chris has been absolutely AMAZING. He stayed all but ONE night at the hospital with me, and that was only because I insisted he go back to the hotel my parents were at just to get one good nights sleep. Nights at the hospital were not great. I was up, in incredible amounts of pain, every two hours. And everytime I woke up I would need him - to bring me something to drink, to help me move to a new position, to rub my back, shoulders, feet or whatever part of my body was in agony. And then there was the constant disruptions of any hospital - the IV alarms that go off when a med is done infusing or my pain med was almost out, the nurses coming in to take vitals every four hours, the xray techs that started rounds at 5am everyday, followed by the blood draws at 6am and the surgeon rounds at 7am. I don't know how he managed everyday. But he did. He was there, encouraging me, comforting me, helping me, and sometimes antagonizing me to work harder and walk further everyday. Its because of him that I am where I am in my recovery.

Its because of him that I am alive right now at all.

I know that when we got together he couldn't know the impact he would have on my life as this disease destroyed my body. I know that cause I didn't know either. I would have never expected someone to be there for me like he has been. I never thought that the thing that was literally destroying my body, would be the thing that would bring us and tie us together in such an unimaginable way. We've had a very tough last few years. But in these last three weeks....somehow all that makes sense now.
These years have forced me to learn to rely on someone other than myself. That was never something I was good at. I was always incredibly independent, never compromising on what I wanted, no matter what. It was my way or the highway. (And I mean that literally. I've actually kicked someone out of the car on the highway before because they refused to do as I said.) I am still not great at relying on help. Still not great at not having the final say, of the control over everything. Probably never will, which is why my relationship with a small anxiety medication will probably be for life. Ive took to it kicking and screaming, but honestly I didn't have a choice. I was dying, and I couldn't do it alone.

Enter Chris. My best friend and soul mate. May sound cheesy, but its true. We were meant for each other and its clearer to me now than its ever been. He was meant to help me through these last few years. I don't know why it had to be so difficult...probably because Im so stubborn it would take an absolute disaster to break through my thick head. But coming out the other side of this, my life seems to have a different perspective. I can finally become the wife I want to be. To have a marriage thats set on a more equal footing than it once was. I can get a job that actually pays a few bills. I can participate in household stuff (to some extent), maybe even have dinner ready when Chris comes home. I finally don't feel like a liability. You have no idea how excited I am for this new life. How excited I am to have a marriage that gives us both what we deserve.

Well, I think thats all for now. Tomorrow I head back to Mayo for my follow up visit after the labs and tests I had done today. I'll update you all on my current status tomorrow. Send up a prayer that the med adjustments we did last week have brought the mild rejection under control and that infection is still non-exisitent.
Have a great night...much love...
Erin