Things are finally startin to wind down...

So the last couple weeks have been good overall. Same ol, same ol with Mayo - solid appointments, everything still looking good. Cardiopulmonary rehab is winding down...got the word last week that I am progressing wonderfully and that as soon as I complete one more education class (Oct 24) I will have completed my CPR requirements and will be able to get the go ahead when its time for me to head home. Spoke with my transplant coordinator and she assured me that assuming everything stays as good as its been, there shouldn't be any reason to keep me here past Nov 2 (the day of my last scheduled appointment)!

You can't even begin to understand how ready I am to get back home. I am ready to get back to a normal life -- whatever that is for me! I have some plans I wanna start putting into action, but I'll leave those ideas for another day. And I know my mom is ready to get home. Being away from my Dad and all hasnt been easy but she's been awesome through this and I can't even begin to thank her enough for being here with me through all this. I'm not gonna know what to do with myself when she leaves!

The moving back to Orlando bit is gonna be a PROCESS. We are having some professionals come in a do a clean of the air ducts and vents in our house as well as a DEEP clean before I can move back in. My cleaning capabilities are somewhat limited right now, and I need a super clean environment to move back to. I'm also thinking about the possibility of having a cleaning service come in once a month to do a deep clean on a regular basis. I can do some basic cleaning, but I can't breathe in the dust and chemicals I'd encounter while trying to thoroughly clean the house, so that's gonna be something I have to figure out in the next few weeks. It'll depend on the cost, and obviously funds are limited with Chris having been out of work for almost three full months. The donations and gifts we have recieved have seriously kept our bills paid up and we are SOOO grateful to everyone who has been so generous to us during this time. You have serious kept us from being stressed to the max and that is SO important for me right now. So, THANK YOU - THANK YOU - THANK YOU!!

So anyway, I am working on getting a duct cleaning service and a housekeeping services scheduled as soon as possible. I won't be able to do the cleaning until I get the ducts/vents done so we'll most likely be in Jax for a few extra days after I am "let go." And don't even get me started with packing this place up and moving it all back!! I HATE moving -- I truly HATE it. My OCD goes into severe overdrive. Everything has to be packed in plastic containers with lids that latch. This way I can see into every box, the are easier to carry because they aren't crazy shapes and they have handles to hang on to, and when loading them into the moving van they stack nicely because they are the same shape and size and they sit on top of each other nicely. I like things neat and organized and those liquor boxes and random packing boxes just don't cut it. I also have this thing with making schedules on moving day and get VVEEERRRRRYYY flustered when things get off schedule. Its crazy I know. I was so glad I didn't hafta be there for the move DOWN. But that didn't stop me from making a schedule for Chris, Kellyn and my cousin Joel. As well as multiple lists of the items I needed, broken down into what rooms they were in and a brief description if needed. If you think thats bad that was NOTHING compared to what I was GOING to do, had I had more time. I didn't get a chance to make my itemized list with picture references and descriptions, along with going through the house and marking each item with color coded post-it notes. Whew...even typing that wears me out!

Lord, I do like a tangent don't I?!

Back to things that matter...we have had a nice last couple weeks - sorry I haven't been better are posting. Ever since my workout restrictions have been listed I've been pretty sore and tired from workin out so hard. I'm tryin not to overdo it, but I can't help it. When you haven't been able to workout in ten years, you sorta feel like you gotta make up for lost time!

Other than working out, I had some fun times with Kellyn, Mom, Chris and Mabree the other weekend. Kellyn came to Jax with my sweet neice for the first time since my surgery. It was soooo great to see them! I had missed them both, but especially my girl Mabree. She is so funny and I have so much fun playing with her. I got a chance to really play and run around with her for the FIRST time that weekend. When she was young it was no big deal that I couldn't  run around and be active with her, well, because she was immobile. But as she's gotten older, she has proven to be a girl with no STOP button. She is wide open and I love that about her, but it was getting increasingly difficult for she and I to really play much. I honestly just couldn't keep up. And the more oxygen I was needing throughout the day just made it that much harder. But the weekend she was here in Jax, I seriously had a ball! I could finally keep up with a three year old....LOL how pathetic is that?

 

We went to TJ Maxx and looked around (its Mab's favorite store...love that we have a little Maxanista - momma's teachin her well!! LOL). We also took Kell and Mabs down to my favorite farmers market/art market here in Jax - the Riverside Arts Market (or RAM, as its referred to here). Its a great market right on the river and has tons of vendors selling hundreds of different craft and art, local farmers with fresh produce, homemade jerky, local honey, handmade spice blends and lots of other specialty food items; facepainting, a gymnastics course, balloon animal guy and a crafts tent for the kiddos, live music, dancers, and DOZENS of food vendors with lots of creative and tastey dishes from latin to southern to greek and italian to stuff I don't really recognize. Its a blasty blast and Mabs had herself a pretty good time (see the cute pink tiger below!)

The next weekend my dad came down for a visit. We headed out to Jax Beach on Saturday and hit the fishing pier. The day was BEAUTIFUL and there was an amazing breeze - what more could you ask for for a day at the beach! I love that here in FL, beach days continue well into Oct/Nov! We spent about an hour just hangin on the pier watchin all the fishermen (and women) haul up quite a variety of ocean life -- including a sting ray!! I wasn't able to react quick enough to get a pick, but it wasn't too big anyway so oh well. You all know what a sting ray is - remember the Croccodile Hunter? - so just google it if you wanna see a pic. After the pier we headed down to the sand to relax under my canopy. Because of the suppressed immune system and some of the meds I am on, my risk for skin cancer has risen CONSIDERABLY, so I hafta be super careful when out in the sun. For the first time since I was a little girl I am back to wearing sunscreen. Oh well...I can breathe. :) Chris and I took our usual three mile walk (we have a route established when we head to the beach for my workouts) and by the time we got back to mom and dad the sky had gotten pretty nasty so we rushed to pack it up and head in. All in all though - a pretty fab day!

 

 

 

 

Which brings us (finally) to this past weekend. Chris and I had every intention of making Saturday a lazy day. We were well on our way when mom called (she had headed out to run some errands, leaving us in bed late into the morning), letting us know that she had just found out that there was an airshow down at Jax Beach and that we should head out there cause, well it was on the beach, free, and who doesn't enjoy a good airshow! We got ourselves up and out to the beach in time for some really good times watching military and civilian planes alike flying past us, so close to wear we sat on the beach you could almost see what color eyes the pilots had! Some of the planes put on some awesome ariel acrobatic manuevers that I never thought a plane was possible of doin. It was awesome and a fantastic way to spend an afternoon.

 

 

 

 

Well, so thats about it. You're all caught up! Tomorrow is a long day over at Mayo. I'm in for the works - blood work, xrays, pfts, bronch, biopsy - so I'll prolly be out of comission most of the day. And starving. The blood and bronch requires fasting before, and my bronch isn't till the afternoon! By the time I finally get over the sedation itll be after 6 and I'll be good and famished by then! So, as I always do, I'll ask you for your prayers for tomorrow. Prayers for good results (increased pfts, clear xrays, and no rejection or infection!!) and that I am able to refrain from eating my hand or something. Also, I don't know if I have mentioned this before, but bronchs can be dangerous. I have a GREAT team of doctors here and I trust them completely. But they are human, and mistakes happen. Any time they go in and do a biopsy, there is a possiblity of a number of things going wrong. One thing is that when they cut the tissue for the biopsy they end up tearing a hole in the lung. Needless to say, thats not the GREATEST thing to happen to a recent lung transplant recipient. I really haven't thought much about the "risks" during all this, but this past week I was talking to the wife of another lung tx recipient who was actually just a few doors down from me while I was still in the hospital right after my surgery. She had told me that they had to go back to the hospital the week before because they punctured a hole in the guy's lung during his bronch!! UGH...I would be livid (assuming that the worst that happens). So please pray I leave tomorrow without a hole in my lungs! :)

Many thanks, as usual, goes out to all those who attended the Toss for Taylor cornhole tournament, the GGI Annual Golf Tournament, the Premier Jewelry party, and the Thirty One party, and a special thanks to those in charge of putting on each. The generosity of all of you continues to be a HUGE blessing to us. We could not be where we are with this recovery if it weren't for each one of you. We are continuously overwhelmed by all the love we are CONSTANTLY receiving. You all are in our prayers everyday. We hope you will be blessed by something or someone as much or more as we have been.

I'd also like to ask for your prayers for a few others who need them desperatley right now:

Leon Peel
Jane Lisk
and one unnamed request

Each of these people are fighting cancers of different kinds, at different stages. Please lift them all up in your prayers and the battle this TERRIBLE disease. Pray for healing and strength for them and their families. Please reach out to these families and express your love and support to them, as you have done to me and my family. The encouragement from friends, family - even strangers - means so much when battling something a disease that is so devasting in every way. Its truly what motivates you to fight.

Much love...xoxo

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