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

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