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. :)


 

Poster child of Lung transplant

Well folks, you're officially reading the blog of a 4 month post transplant patient. One who was referred to as "the poster child for lung transplant" (I tried not to be offended by the "child" part lol) by her Mayo docs yesterday. Went to mayo and they are super happy with my progress, which makes me super happy! They let me finally get a FLU SHOT which I was sorta freakin out about. They wouldn't let me get one at first because of the possible complications of introducing a virus into my newly suppressed immune system. But, since I am doing so well, they went ahead and allowed me to get one. So, THANK THE LORD for that! I was freakin about about rollin into flu season with new lungs, no immune system and sick people everywhere. But atleast I'm protected from the flu, and my pneumonia shot is still good (got it last year - lasts 5 years) so hopefully I'll avoid anything super cray cray. Oh, and lung function is the highest it's been, so in the words of my beloved Phil Robertson, I'm "happy, happy, happy."

Speaking of Mr. Robertson - does anyone out there LOVE Duck Dynasty the way I do? These people -- well, lets just say, these are my people. They have beards, they are funny and they kill birds. What's not to love?? And I promise, Ol Si is my Chris in 30 years. It's crazy the similarities between them. I'm serious, it's like looking into the future watch that crazy ol coot. You heard it here first people.

Not the greatest pic in the world, but there it is - my SIGNED poster :) Thanks to the great Boyce Adams - husband to my best friend Katie - for snaggin this for me. Prolly can't make it out, but its signed by Phil and says "Erin, Take a deep breath Rom 1:16 - Phil Robertson" Gotta love it :)


Been back to work for a little over a week and I am really enjoying getting back to "normal" - if that's what you can call it. Not sure if this can be considered normal - it waaaaay exceeds any normal I'm used to! Planning on heading back to school in the Spring, so ill be workin on that the next few weeks. I'm pretty excited, but - well lets be honest. My first attempt at college didn't exactly go as planned, so fingers crossed this one turns out better than the last.


Well, guess that's about it for now. Nothin super exciting happening right now. Sorta seems like this blog as served its purpose. Not sure where I'm gonna go from here with this thing, but I'm either gonna hafta stop writing or I'm gonna hafta start coming up with stuff more interesting than my day to day activities lol.

So, hope everyone is having a great and are gearin up for a great holiday season. I'll be heading up to North Carolina the weekend before Christmas and I CANNOT WAIT! The countdown begins - 22 days!

Have a good one everybody...



Much love...



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

Best appt yet, BIG THANKS, and a visit from the dad-in-law

Whew. The last week has been full of activity! Some I was involved with, some I wasn't, but all were awesome and left us feeling even more thankful and blessed than ever. God's grace continues to bless my family and I continue to be in awe of how incredible this journey has been. I know Ive said this over and over, but I am still so overwhelmed by all that has happened the last two months. As soon as I think Im getting used to this new life and all the incredible things that have come along with it - BAM! I get more news that just completely floors me! Thankfully, all this flooring news has been GOOD flooring news, so we'll just hope this trend continues!

As some of you may have seen on my FB post last week, I had my standard Mayo work up, which consists of blood work, chest X-ray, pulmonary function tests (PFT) and the lovely bronchoscopy and lung biopsy. Everything went well the day of testing, as it usually does. Everything at first glance looked great, but as usual, you never really know the full results until the next day. What I did know for sure though was that my PFTs were again improved from the previous week - up to 88%! This was the first PFT that resulted in completely NORMAL results! For the first time, the doctor reviewing my results looked at me and said, " Great news, you are officially showing NO red!" To which I replied, "Huh?" She explained that all the different measurements we took, when entered into the computer, either appears black or red. Red is below normal, black is normal. For the first time since I can't even tell you when, prolly high school or earlier, ALL MY NUMBERS WERE BLACK! I am officially breathing with a NORMAL lung function!!! And she says that for the next month they will continue to climb gradually, as opposed to the near 10% jumps Ive been seeing, but that she wouldn't be surprised if I hit 100% before I head home! Can you even believe that?? I can't! To think that exactly two months ago I was hardly breathing at a sad 21% and today I am breathing at 88%!--incredible. You cant imagine the prayers Ive been sending up lately! I cant thank God enough for the amazing gift He and my donor have given to me. I have always believed in organ donation and the importance of it, but until I went through this transplant the full magnitude of it was lost on me. I have a completely new understanding of the incredibly LIFE CHANGING gift this is and the amazing sacrifice my donor and his family have made. Without his decision to be an organ donor I may not be here today, and I absolutely wouldn't be breathing NORMALLY if I was! If you get a chance, please send up a prayer for my donor and his family. Losing a member of your family is possibly the hardest thing any family can go through especially when the person is young, healthy and taken from you suddenly. Also, if you'd like more information about transplant and becoming an organ donor, please check out the donation and transplantation page of my blog!


PFT HISTORY -- look at those numbers! :)


Where were we? Oh yeah - test results! So as you can imagine I was thrilled with the PFT news! But as the recent past has dictated, that doesn't mean everything is perfect. I still haven't completely figured that one out, but oh well. My past few biopsies has showed mild rejection. We have made modifications to my meds and continued my pulmonary rehab. Its been about three weeks since my last bronch, and as I have mentioned, I have been incredibly anxious about the length of time between biopsies. I know that if things were getting worse there would be indicators - fever, congestion, fatigue, pain, etc. Luckily Ive had none of that, but honestly I never did, and still had rejection. So needless to say (as most of you know from previous posts) my anxiety level going into my follow up appointments is always through the roof, and learning about the rejection never helps. This week tho, I walked in anxious, but walked out of there on cloud 9! My doctor told me that not only was he thrilled with my PFTs, but that my X-rays were perfect and that my biopsy came back showing no infection and NO REJECTION! Finally!! As of now, my recovery is going PERFECTLY. We adjusted some of my meds, reducing the amounts of meds I am taking, which is always the goal. Of course we have to keep an eye on my blood work and the PFTs, X-rays and bronchs to make sure everything stays going well, but for now everything looks great! My only issue was that my magnesium levels were low again ( a combination of medication side effects and my difficulty with absorption due to my cystic fibrosis ). So the next day I had to head back over to Mayo for FOUR HOURS of IV magnesium to jump my levels back up before we increased my daily dosage. So for now, Im doin really well and just continuing with my weekly appointments and rehab, presumably just for another month before it'll be time to head home!

Speaking of rehab, I officially hit the two month mark post transplant this weekend (whooo hooo!), which means my weight lifting restrictions have been lifted and I am officially done with supervised rehab. Now I can finally lift more than ten dang pounds and I can do my rehab workouts at Mayo alone (you have no idea how great this is gonna be) and at my own pace (which, again, is going to be so much better) . Up until now the last few weeks have been very frustrating with so many limitations on what I can do and how fast I can go. I mean don't get me wrong, I understand the reasoning. Apparently studies have shown that by overdoing it at rehab, i.e. lifting too much weight too soon can cause wounds to open or the sutures within the lung to fail and the patient survival rate drops to only 50%! So thats def not something I want to happen so I have been going along with it, but I haven't been happy about it. This happened just in time, as my patience with the snails pace has been dwindling down to a dangerously low level.

Also last week, three fundraisers were held to help Chris and I with our ever increasing medical bills resulting from this transplant. Id like to say a huge thank you to everyone who attended the Premier Jewelry party and to jewelry consultant, Ashleigh Hinson, who donated 50% of her sales to us. If anyone would like more information about Premier Jewelry or to order some really fantastic jewelry give me a shout and Id be happy to pass along her information to you.


Premier Jewelry consultant Ashleigh Hinson, and the party hosts - my sister Jillian Stallings and her mother-in-law Donna Stallings.

Another fundraiser was actually an annual golf tournament in Albemarle NC, Chris and I's hometown. The Green Gopher Invitational is held by a number of young professionals in Albemarle every year. Each year the proceeds from the tournament go to locals who are in need of assistance and/or local charities. This year Chris and I were humbled to be one of the recipients of the GGI gift, along with the William M Hudson Memorial Scholarship Fund. We are so grateful to Ben Lisk and the other organizers of the GGI and the generosity of everyone who sponsored or participated this year. We hope everyone had an amazing time at the Friday night kick off party and during the tournament on Saturday!

The final fundraiser was a cornhole tournament held Saturday at the bowling alley in Albemarle. Ashley Huneycutt and Jennifer Coble worked hard to put that one on and I am again, so grateful. We have been shown so much love from our hometown of Albemarle and it continues to overwhelm us. Thanks to all who participated in this event as well. That was one I truly hated to miss! ( yall may not know this but Im kind of amazing at cornhole...just sayin )

Speaking of Friday, Chris and I had a visitor! Chris' father Wayne was in Jacksonville for just one day due to work obligations and we were able to spend some time with him. It was great because we don't get a chance to see his family much because of work schedules. His mother and older sister came to Jacksonville right after my transplant but Wayne wasn't able to join them, so it was great to have the opportunity to have him here! We picked him up and went to Waffle House, then we headed to the beach to relax for most of the afternoon. I sat under our canopy in my clothes and took a nap, while the Taylor men relaxed and enjoyed a little QT together! Let me tell you..those are some entertaining men haha :). After that we headed back to the apartment where we grilled out and relaxed in front of the TV. A pretty low key visit, but it was great to catch up with him and I was glad Chris got the chance to see his dad. And I think Wayne enjoyed his time at Jacksonville Beach so I think we've sold him on a return trip! :)


Chris and his father Wayne enjoyin some father/son time at Jacksonville Beach.


Cut to today. Another appointment at Mayo. I met with Dr Rosser today, the liver transplant doctor. Some of you may remember that at the beginning of this whole transplant journey I was being evaluated for both a lung transplant and possible liver transplant. Because of my cystic fibrosis, my liver has some mild scarring and blocked bile ducts resulting in less than stellar liver function. One of the main concerns with that was the possibility of liver failure immediately after such an intense surgery like a lung transplant, which would be deadly because they would not have been able to go in and transplant the liver afterwards. Partly because of time limitations, partly because it would be too traumatic of a surgery to do right after the first was completed. So the possibility was that I would need both lungs and liver at the same time. I went through the evaluation process and it turns out that currently my liver is not bad enough yet to transplant. So we went ahead with the lung transplant, but will continue to monitor the liver function closely and reevaluate as needed. So meeting with Dr Rosser today was about how we will continue to monitor the liver once I go home and what issues we are currently facing. Right now my liver enzyme levels are a little elevated. Im not having any symptoms of liver failure though so he's not really concerned. Apparently three medications I am on cause this rise in enzyme level and if adjusted early enough liver failure can be avoided. So he is going to discuss my medications with my transplant team. The good thing is he says is that my liver is "consistently off" so even though the numbers are elevated, they are fluctuating within a 20 point range and not rising. He is going to continue to monitor my blood tests and has scheduled a follow up MRI at my return appointment once I have been home for three months. Then we will follow up with MRIs and ultrasounds every 6 months for the first two years and then will probably drop to once a year if everything remains stable. So as it stands, everything liver wise is pretty much where it has been which is great news. Sometimes the trauma from a surgery like that and the follow up medications can cause serious problems so we are glad that the decision to hold off on the liver has proven to be the right choice for now! He gave me a laundry list of symptoms to look for which could indicate deteriorating liver function and instructions to come straight to the hospital if any appear. So prayers that my liver function would remain stable, or hey if your really feelin frisky, prayer for IMPROVED liver function - that would be even better!

So thats pretty much it for now. This week is pretty low key, just working out and some X-rays and follow up appointments later this week. Thank you all again for continuing on this journey with us. The continued support and love is so important to us and we are eternally grateful.

Much love...
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

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

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

The moment this blog title took on a whole new meaning...

...was seriously instantaneous.

From the moment I opened my eyes I could feel it. Still on the vent, my left eye - for some reason - in excruciating pain, my arms tied down...but I could still feel it. Once they took me off the vent, barely 12 hours after coming out of surgery for the last time, I could REALLY feel it.

I could feel what I hadn't felt in years. Air - moving so quickly and deeply and effortlessly into my lungs at such a rate I wasn't actually sure I was breathing. I remember one of the first things I asked out loud was to my mother - "Am I still breathing?" It was such an amazing feeling, but a very unsettling one at the same time. For over ten years I have fought for every breath. Every time I took a breath in it was a constant battle to get enough oxygen into my lungs to sustain me. And the pain. Sometimes just a dull constant ache, other times sharp acute pain that left little spots in from of my eyes. And don't forget the ripping. For the last year I had been experiencing an almost debilitating pain in my left side. A pain that I could feel and HEAR as it felt like something was being ripped from my chest with every breath. I was never sure how that could be. How or what exactly could be ripping?! And my Lord, if it is ripping, that canNOT be good. Turns out though, I was right. There was in fact ripping going on. Remember the complication during the transplant? Where they had to literally cut my lung away from my chest wall? Well turns out that since my left lung had adhered itself to my chest wall, every time I took a deep (well, I guess DEEP is generous, but you know what I'm saying) breath my lung was literally being ripped away from my chest. Talk about pain.

But now - it was like I wasn't breathing. So much air all at once and I couldn't feel a thing. Being so in tune to my breathing and coughing for so long made this kind of breathing feel wrong. I strained to listen to my lungs as a put the words "Inhale. Exhale. Repeat." into practice. Over and over trying to wrap my mind around the fact that:

1. I was actually still breathing
2. I was in a horrific amount of pain - but not the pain I was used to. In fact, I decided almost instantly that if this was the trade off - searing pain shooting throughout my body every time I shifted my weight even the slightest - I would take it, and take it over and over, everyday, if I could breathe this deeply. My lungs were the only things that WEREN'T hurting.
3. I was breathing and not coughing. I was talking without getting winded.

And I never want it to ever go away.

For the next few days the concept of "Inhale. Exhale. Repeat." would consume nearly every coherent (and incoherent for that matter) thought I had. It didn't help that my nurses, Chris, mom, dad, my sisters, and my doctor's were all instructing me to do the same. I kept flying into a panic, sure that I wasn't breathing and insisting on knowing IMMEDIATELY what my blood oxygen stat was. I wasn't wearing oxygen so I felt that at any moment my stats would plummet and I wouldn't have my safety net to make sure I was OK. The thought of not breathing was petrifying. But there were the numbers: blood oxygen levels rarely dipping below 97% on room air. It was UNREAL. Its still unreal. Officially two weeks post transplant and the effortlessness of taking in a deep breath still catches me off guard. Walking around and not being out of breath - crazy. Walking and talking at the same time? That's been absolutely impossible for YEARS now. So much pain - but so much freedom.

Weeks ago, getting up from the living room and making it the bathroom required 2 minutes to get myself mentally ready. The walk to the bathroom usually required me to catch my breath over the course of about 10 minutes before I could get up the energy to make it back to the couch. Its been the last 6 months that I finally realized that there wasn't gonna be any more "getting better." That I was in fact dying, and that the day-to-day fight was only gonna keep me going for a short while longer. You might not have seen it on the outside, but I was finally understanding what was going on on the inside. They never came out and said it directly, but my pulmonologists all knew it. My suspicions were confirmed a few days after transplant. One of my doctors who had been in the OR mentioned getting a chance to take a look at one of my lungs once it had been removed during surgery. The look on his face said it all, but I made him tell me anyway. "This happened at just the right time."

You can say that again.

The way every aspect of this journey has fallen together so far is still overwhelming me on a daily basis. The timing of being listed, to getting my call, and then to be discharged after only 9 days is not the normal case for double lung transplants, that's for sure. The way the apartment I wanted for us to have whenever we did get to Jax was available exactly when we needed it, even though the complex managers had warned us that they have very little availability so it may be difficult to get it when the time came. The way it was THE perfect apartment - first floor, brand new carpet installed two days prior to our moving in, freshly painted walls, the perfect size for Chris, my mom and I to share for three months, the way our furniture was able to be moved up here and fit like puzzle pieces into the space so we didn't hafta rent anything. The way Chris and Mom's jobs are helping make their time off during my recovery as easy as possible. The way I was able to get home from the hospital, just in time for my best friends in the world to make a special trip down to Jacksonville to visit me, not knowing whether I'd still be in the hospital or not...

Only God makes these types of things so beautiful. It would be so easy for us to focus on all the negatives - the pain, the expense, the not knowing what will happen next, the inexplicable loss my donor's family is going through, and will continue to go through...but God has shined a light on this journey so bright, its made that almost impossible. Don't get me wrong, there have been, and WILL BE, days where it all feels like way too much. The pain, the discomfort, the frustration of finding a balance between the life I was living, the life I want to live and the life I will be able to live. Overwhelming doesn't even begin to describe it. But in those moments God always gives me something, something to remind me that this is His doing. And that the things He does, he does right.

Life immediately post transplant has been incredible. My favorite thing to do now is walk. Yes, you heard that right. Walk. And if that's not God's doing I don't know what is! Since day 2 after transplant they had me up and walking. By day 4, I was walking 1-2 MILES a day. MILES people. Do you have ANY, ANY, ANY idea how long its been since I have walked a mile in a full day? Much less at once, without getting winded, without hurting, or without needing oxygen?? If you do know, let ME know would you? Its been so long, I honestly couldn't tell you. I can honestly say I am hooked on walking. Anywhere and everywhere, I am up to move. You can't even imagine what it's like to not be able to just walk out to your car to go to the grocery store without it draining everything out of you. I went to Target for the first time post transplant the other day and you know what my mom said to me? "Slow down!" Holy crap...that's awesome.

As it is right now, I need to stop here for a while. I'm headed back out to Mayo for a few more doctor visits. Slow day, so nothing but really goin over meds, progress at the PFT yesterday and hopefully my biopsy results from yesterday. Like I said before there is much more to tell, so I'll be back to the blog maybe tonight, but def tomorrow.

Enjoy the day folks... :)

Much love...



Erin

Ouch.

So, guess who feels like they've had a close encounter with an 18-wheeler?

Yup, that would be me.

So as you know I was admited late last week cause I was coughin up blood and quickly learned that my port was all but done for. They performed an angiogram and found that a fibrin sheath had developed at the end of the catheter making it difficult to flush and nearly impossible to draw blood. For those of you unfamiliar with what a fibrin sheath is, it is a mass of scar tissue that developes at the end of long term use catheters which can harbour bacteria and can make using the catheter difficult.

Based on the results of the angiogram it was determined that I would need a new port inserted. Ports are usually good for 3-5 years and I had had mine a little over 3 years. Another negative about my port was that it was not a Power Port. A power port is important because it can be used to inject contrast and other fluids that a regular port cannot. Since I am officially moving forward with the lung transplant, I needed a port that was functioning properly and could be used with contrast if need be.

Yesterday that took me down to intravenous radiology and switched my old pic out for a new one. Beause my veins are weak and pathetic, they were unable to put the new port in a different location, which has made this procedure INCREDIBLY painful as they had to cut into and remove built up scar tissue and make a new area for a new port. All that tramaua to that area has left me barely able to move my left arm for the moment, and my chest is more sore than ever. Soooo, another day in the hospital for me, when I thought I was gonna be goin home today. But atleast I got a brand new port. Feels like Christmas.

Oh, AAANNNNDDDD I just coughed up more blood a little bit ago. Not much thankfully, but enough that its prolly not good for me to go yet. Pathology came back on the sputum culture I gave when I first got here and I cultured psuedomonas, not staph - which is what they had started me on, as it is my most common bacterial colonization. So we are switchin, or I guess ADDING Tobramycin to my Zosyn IVs.

Those new lungs can't come fast enough.

Fun stuff people. Seriously, i don't know what I will do with all my free time when I'm no lomger at the mercy of lung infections. So at any rate, thats where we are today. Im going to try to relax and get a nap for the moment. Hope all is well with everyone out there...

Mich love...Erin