I'm Outta Here!!....kind of

Good news people!

Yesterday, as many of you know, was my full work up day at Mayo. Blood work, xray, PFT and bronch. Blood work and Xray were great as usual. My Prograf (immunosuppressant med) levels were a little high, so we lowered that a bit but otherwise everything was good. Xray looked the same as it did from a month ago, which is super. All that is great, but sorta the more boring of the results. Bronch results came back and, again, no infection and no rejection!! Whoo hoo! Thanks for all the continued prayers for that - they are def workin!

Now for the coolest results -- my PFTs. As you know, they have been steadily climbing each week. Last time I did a PFT, my FEV1 (the score that gives you the best idea of your lung function) was up to 88%, and my Dr said they wouldn't be surprised if I hit 100% before I left. Well, my FEV1 was NOT 100% -- it was 103%!!!!

Yep, you read that right -- 103%. I am officially breathing better than I ever had in my ENTIRE LIFE. Heck, Im prolly breathin better than some of you! LOL!! Sorry, don't mean to be ugly, but this is so stinkin incredible I sorta wanna gloat for a minute, haha! So... who wants to race?? :)

Went back over today to go over all my results with Dr Mallea as usual. And the best part of the last two days was during this meeting. I was given the OFFICIAL OK to head home!!! I won't be able to leave just yet though, not for another almost two weeks. I have a few more appointments next week (luckily nothing that should keep me from leaving) that I have to go to, but as soon as those are over we can start packin up! Unfortunately we only brought the bare minimum here to Jax so we really can't start packin up till we're right about to leave. But since we only brought a few things, hopefully it won't take long (and it won't cause me to down a bottle of Xanax that day LOL). So as of right now, we don't have an EXACT move out date. Probably lookin like sometime during the middle of the week of Nov 5 (at the earliest). They might be adding one more appointment with my infectious disease Dr but Im not sure when that's gonna be. It might end up holding me up just a bit longer. Mom will be coming back to Orlando for a while to help me get settled and unpacked and to help me with gettin to a few appointments when I get home. Hopefully it won't take any more than a week or so once we get back to Orlando, and she can FINALLY get back home to NC for good!

Another great thing about having the "go ahead" -- I can finally drive again! I haven't driven in close to 4 months (remember, I was in the hospital for about two weeks right before my transplant, so its been even longer than just this surgery/recovery). Im gonna need to practice in the parkin lot or somethin before gettin back on the road LOL! Mom says she'll let me drive sometime tomorrow. Just be glad yall don't live here in Jax - this could get interesting!

Can you believe this? This entire thing is almost over. I can't believe that not even four months have gone by since I was evaluated, listed, transplanted - and now Im almost going home. This has been such a whirlwind it still doesn't seem totally real. I don't think it will be completely real until I get back home and get back to work and school (yup, going back to school in the Spring! That's a whole other thing for yall to pray for, lol!!) I honestly thought this entire process was gonna be much longer. The wait list part I was SURE was gonna be MONTHS, not TEN DAYS! That still blows me a way. The fact that (unless crap hits the fan) I'll be able to be HOME for Thanksgiving (something that hasn't been possible for the last two Thanksgivings --been in the hospital with infections previously)!! Same thing for Christmas. I haven't been in the hospital for Christmas yet, but I was sick the last time - on IV meds - and had just gotten out of the hospital the year before so I was still feelin like crap. I'm actually gonna be able to ENJOY the holidays this year! CRAZY -- and so awesome!! :)

So all in all a great morning. Except for the GI testing I did this morning. Ughhhhh. Terrible. First test was to make sure the muscles in my throat were acting normally and things weren't getting "caught up" and not going down properly. Which honestly I thought was kinda stupid. I mean if I was having problems swallowing I THINK I would have found that out by now. I don't think I would have put on TWENTY FIVE POUNDS in three months if I wasn't gettin things down. I would think that would be something they would do right after surgery if anything. (When you get intubated the tube they insert can make complications to your throat and vocal chords, so I guess thats the point of that one) They inserted this HUGE tube up my nose and down my throat which was AWFUL and then kept messin with it tryin to get it in just the right place. I swear that thing was in for like 20 minutes and it HURT. And since they were testing my swallowing there was NO sedation and no numbing to make it even remotely pleasant. I sat there visibly shaking, hurting, and gagging for what felt like for-freakin-ever. The other test I am STILL doin. Its just as awful. They took out the large tube and entered a much smaller one (one good thing). Its attached to a monitor that is recording the PH levels in my gut. Basically testing to make sure the meds I'm taking are controlling my acid reflux. The LAST thing you want to happen with transplanted lungs is something coming back up and get into my new lungs. It could cause lots of problems, mainly infection. I have to keep this wretched tube in my dang face until tomorrow morning. I hafta say, its very uncomfortable and is DRIVING ME BONKERS. It makes it hard to eat and every time I swallow it tugs like crazy. Every time I lay down I hafta hit this button, when I sit back up I gotta hit another button. When I start eating I gotta hit a button, when I'm done I gotta hit ANOTHER button. When I cough I gotta hit a button, if I have any reflux, another button, when I take meds, another button....its absolutely OBSURD. Im 30 seconds away from ripping this crap right outta my face. *sigh*....I just gotta make till 7am...just 7am. Pray for me people, I might go completely outta my head before then. I hafta keep tellin myself Ive been through worse. But quite honestly Id sign up for another transplant just to get this dang thing outta my nose lol.



Pretty nice huh? Needless to say, we came straight home after Mayo. And it was a drive-thru situation for dinner. And now I've posted this mess on my blog, so I guess all that was for nothin, LOL.

So that's where I'm at. Uncomfortable, irritated, and completely thrilled! Hello Dr. Jekyll/Mr. Hyde! Thanks, as always, for all the prayers and support through these last few months. Its becuase of yall that this has been such an incredible journey for me and my family. I hope by following along these last few months God's grace and power has been a big of a blessing to you as it has been to us. Prayers work people! And GOD IS GOOOOOOD! :)

Much love...xoxoxo

Erin

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