Sore...tired of being sore.

Ugh...ever feel like you'll never not be sore again? Yeah, startin to feel that way over here.

Past week I've been tryin to cut back on the amount of pain meds I've been taking. Well, I'm beginning to think that may have been slightly premature. As these muscles and nerves that were sliced and diced grow back together and heal, a lot of the numbness around my chest and back has gone away. Great right? I've been wanting it to go away for weeks now -- its a gross, weird feeling to be numb around your body...just Ughhhh -- but now in its place is a lot of discomfort. Not so much PAIN, but discomfort. It makes for very uncomfortable sleep and puts me in a less than stellar mood to say the least. Also the last 4-5 days, I have been experiencing quite a bit of pain in my right shoulder. Like significant pain. The kind that catches your breath and makes you holler in pain for about 2-3 straight minutes. It feels like a muscle is getting "caught" or something and then this searing pain follows until I can sorta "work it out." I was at rehab this morning and told them about it. Another rehaber (I guess thats what you can call us) spoke up and she was having the exact same pain in one of her shoulders. I asked her what she was doing about it and it turns out she a rotary cuff tear that she got during her transplant surgery!! They had done an MRI and found it last week and shes meeting a doctor tomorrow to figure out what they are going to do about it.

Seriously? I swear, if through all this I end up having a rotary cuff tear...heads will roll.

So needless to say my physical therapist is very concerned and all upper body work outs have been suspended until I can meet with my doctors to figure out if I also have a rotary cuff tear. Ugh. Luckily I meet with him tomorrow, so HOPEFULLY we'll figure out what's up and HOPEFULLY it will NOT be a rotary cuff tear. I have no idea what they do for something like that, but it sounds like surgery to me, and quite honestly I've had all the surgery I'd like to have for a while!! So fingers crossed and prayers goin up that its something small and manageable.

Rotary tear. Bless it. **SIGH**

Other than the soreness, things are going pretty good down here. I have blood work and chest xrays and stuff tomorrow and its gonna be a loooong day I have a feeling. No bronch till next week though. Honestly, waiting that long between bronchs (it'll be two weeks) makes me a little nervous. I feel like thats too long and that something is going to happen that won't be caught until its too late. I know that if there was any cause for concern I would probably feel it, but I can't seem to shake the nervousness and the dread of waiting for two weeks to possibly have them tell me I'm in full blown rejection or something. I trust these doctors completely to know what they are doing, and trusting God that everything is going to work out, but its still hard. And giving myself peptalks everyday is frustrating, and honestly I don't even believe myself. So sorta useless sometimes. I don't handle stress well to say the least and this is SERIOSULY creating an increase in Xanax usage. I think I'll feel better once my next bronch is here - atleast if it gets here and everything is good. Otherwise I might have a nervous breakdown. Just thinking about it right now has started making me sweat.

MOVING ON.

Tomorrow is Chris' 30TH BIRTHDAY! We are planning to just have a few people over to hang out by the pool and grill out. I say a few people cause its a weekday and we only know about 3 other people here in Jax. I wish I could do more to make it a bigger deal, but Chris isn't exactly thrilled with the prospect of turning thirty so maybe its for the better. He's been findin some gray hairs lately - all I am sure cause by me. (Sorry babe!) We have plans to go to a concert on Thursday just the two of us at the Jacksonville Theater. A family friend of ours works with the artist and has gotten us free tickets to go so I am excited about that. I've never really heard Chris Isaak before and am not familiar with his music, but I hear he puts on a great show and itll be fun just to have a date night and do something a little different. And its even better cause its FREE which is pretty much the only way we are doin anything these days!! So big thanks to Kristin Sauter for the chance to have a great night out!! :)

I've been approached by a few people who are putting on fundraisers for Chris and I in the next few weeks and I just wanted to say that Chris and I are so overwhelmed by the support we continue to get from our friends, family - even people we have never met. Going through something like ths is so stressful and demanding on your emotions, your mind and especially your wallet. I can't thank these people enough for putting together these events, and thank each and every one of you who have committed to participating. Having so many people offer their time and resources has meant so much to us. I honestly wish this wasn't something that needed to be done. But please know that we don't take the sacrifice and generosity you all have made on our behalf lightly.

This entire experience has been an eye-opening one for me. I am not one to usually TAKE things. I'm very independent. Don't like to ask for help. I guess its a pride thing, also a control thing (read back through the posts if you missed my rant about my control issues..they are real and extreme). From the get go, I've been forced to take and recieve...my new lungs for starters. My survival hinged (and still does) on these donor lungs. Without this young man I might not be here right now. If nothing else, I'd still be circling the drain. Without the love and support from so many friends and family we would not have been able to make it through the last few weeks. I've been told numerous times that I need to accept help more graciously and easily. So, I'm working on that. I've sorta been forced into it really. But please know that while I may not be thrilled with the IDEA of having to accept so much help, it has meant more to me than you will ever know. I still wish I could refuse it all, take care of it all myself and just go about my day...but I'm learning to recieve with an open heart. And it has been such a blessing. Being able to take some of those things off my shoulders has been so important to my recovery. My stress level is SO high as I go through this, and knowing that I have such an INCREDIBLE support system has kept me able to heal and focus on taking care of myself. Without so much love I know that I would not be at the level of health and success that I am currently at in my recovery. Thanks will never be enough to everyone...

Well...thats all for now I think. Maybe next time I'll have something a little more entertaining to post. Until then...take care :)

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

It was NOT a drill.. Erin's GOT LUNGS!

It was NOT a drill. Erin received her new lungs on Tuesday July 31^st at the Mayo Clinic in Jacksonville, FL. In Erin’s place, I am blogging to keep all her adoring fans updated on her journey. Don’t worry, she will take back over soon enough!

Erin arrived at the Mayo Clinic and was in her room waiting for her scheduled surgery, by about 9:00 am on Tuesday. Family began to arrive at the hospital around 9:30 am excited and nervous for the final “Go” from the surgical team. As Erin and the family waited, the surgery time moved from noon to 2:00 PM while the harvesting division of the transplant surgical team went to get Erin’s new lungs from Miami.

Erin went down to the OR with a smile and a wave at 1:50 PM and went into surgery at approximately 3:00 pm, when the all-clear was received from the harvesting team. The Mayo OR gave the family calls a number of times throughout the surgery to update on how Erin was handling everything and where they were in the process. Finally, at 8:25 PM, the large group of Erin’s supporters got the exciting call that they were closing her up.

Erin returned to her ICU recovery room at around 9:00 PM sound asleep with her team of transplant specialists. The family was allowed to go in about an hour later to see her and say a quick prayer. Dr. Keller was there when I arrived and I got to ask plenty of questions, which he was thankfully willing to answer. At that time he explained that there was some bleeding around the left lung which could potentially cause some setbacks.

See, the left lung has been Erin’s nemesis over the years. With little, if any, true function left (due to a number of embolizations and bleeds) the lung had attached itself to her already inflamed pulmonary wall. When it was time to transplant this lung, there was quite a bit of bleeding that took place from its removal and continued into the night on Tuesday.

By midnight, and after approximately 35 minutes of sleep at the hotel, Chris gave us a call to let us know that Erin was heading back into surgery to control the bleeding that was coming from the left lung area. Back to the hospital we trekked. She was in surgery for about 2 hours and they were able to control the bleeding and remove two clots which had formed over her time in recovery. These clots had to be removed through surgery since they would not drain and could subsequently cause increased pulmonary pressure and collapse of the new lung.

By the time the family arrived back at the hospital in the morning, Erin was stirring. Being that I was one of the first in the room, I was concerned when I saw her lifting her hands (especially since the Dr. had explained to me that they might have her unconscious and on a ventilator for 24-48 hours after surgery). Chris quickly explained that they were waking her up and they were ready to get her up and moving. Things had obviously improved drastically since her latest surgery.

Erin awoke with a little confusion and fight against her ventilator but quickly calmed and focused to understand what was taking place. She was on narcotic medication at that point so was pain free but was lucid enough to spell things on her hand and show us that amazing sense of humor that is unique to Erin and, as we have seen, never failing.

Over the past two days the doctors have been working diligently to control pain and move her forward in her recovery. Let me please tell you, she is SUPER WOMAN. I have been saying it on Facebook since I started updating everyone, based on her incredible courage and strength before the surgery, but she has truly earned the name throughout this process. Yesterday and Today she has been weaned off many of the extra machines that go along with a transplant and has pushed herself to get better and better.

Erin is doing PT for her lungs and she is incredible! It’s just amazing how she is so competitive with herself and is working so hard in increase her PT numbers despite the fact that she has been told that most transplant patients don’t even EXPAND THE LUNGS ON THE FIRST DAY! Well, Erin didn’t get that memo, and neither did her husband! So, the funny part is, Chris thought she was supposed to be doing that every hour on the hour so he set his alarm and woke her up all night to do her PT. Well, yesterday morning, the nurse explained that she was only supposed to do PT during waking hours…. SOOO she earned a little extra credit.

She is awesome.

Yesterday was her birthday. She turned 28 and got the most amazing gift anyone could get. Life. Thank you Jesus for this gift, and we pray that the gift that this donor gave to Erin and our family will be a comfort to the family who lost their son/father/uncle/friend. He was able to provide a precious gift, and I can guarantee that Erin will take full advantage of the opportunity that has been given her. I only hope in my life and death I can provide such a gift to someone, I can tell you that Erin has and will continue to.

Yesterday Erin had machines removed, had a complete meal and took a motivating and awe inspiring walk. She walked around the entire ICU floor and wasn’t winded or tired. She was amazed and so were all the folks on her floor. Less than 24 hours after her surgery, she was walking… Wow.

Today she has continued to improve. More machines are gone and plans are being made to remove the chest tubes which are draining fluid from her pulmonary cavity tomorrow and the next day. The infectious disease doctor stated that would make her feel like a whole new person, especially since that is one of the most painful areas of Erin’s body right now. Great things are continuing thanks to the diligent prayers of Erin’s many friends and Prayer Warriors.

Erin’s husband has been her rock throughout this entire process and we all are so very thankful for him. He encourages Erin and knows just when and how to push her to get the very best out of her. Throughout their years of dating, and now years of marriage, I don’t know that Chris ever anticipated what his role would be in this stage of Erin’s life. I can now easily tell you, we would all not be where we are today without him, and we are so thankful!

I would like to thank you all for your many prayers and messages, Likes, texts and calls. It has meant so much to our family to feel the love and support that has been given to us all. Erin has always been a miracle but this has proven just how great His power is beyond a shadow of a doubt.

I know this is long winded but so much has happened and I didn’t want to leave anything out. Erin will be back soon. She looks forward to updating you all as she improves and feels better. Keep following, her posts to come will surely be entertaining!

Well, I'm back

That is, back in the hospital.

Yes, dear friends, your's truly has gone from new port procedure on Monday, home, and back to Winter Park Memorial in five short days.

What a way to ring in the one week anniversary of being listed for transplant.

Long story short (or I guess short story, made even shorter) I was discharged from the hospital on Wednesday, had my usual day of feeling crappy the day after, and by Friday night was headed back across town to the hospital after an evening/night of coughing up more blood. Its safe to say these 'ol lungs of mine are wearin out quickly.

So here I sit, watching WPMH's version of cable, which features about 10 channels all about the hospital and its hospital network, Florida Hospital, 6 channels featuring the 2012 Olympics and about 5 other channels that never have anything decent playing. Luckily the Food Network is one of those few so all isn't a total loss. Well, unless you're scouring the hospital food menu while Giada cooks up one of her amazing italian dishes and all you're left with that comes close to it is the hospital spaghetti. Which in all fairness isn't half bad but still - you know you'd rather eat Giada's version.

But I digress.

Last night ended with Chris driving me, kicking and screamin as usual, to Winter Park Memorial Hospital around 3ish this morning. After we managed to get past a terribly unpleasant woman - Vicki, RN - at triage, we settled down to await the usual assesment, xrays, breathing treatments, etc in our quartered off section of the ER. It always amazes me how they insist on me doin a breathing treatment first thing. Like they assume thats not going to be my first go-to treatment when flare ups like this come along. Its CF, people, not IBS. I head straight for the Albuterol, not the Imodium.

At any rate, we proceeded to be entertained (and equally grossed out) by the neighbor sharing the other side of the thread bare curtain separating our pen from the one next to us. For hours, the 70 year old man next to us requested (very loudly) a "pee jar," explaining, to no one in particular as the nurses were doing a fine job ignoring him most of the evening, that he was on Lasix (a diuretic) and when he had to go, he had to GO and that he prolly wouldn't make it to the bathroom. I can't tell you how excited I was to have a chance to maybe experience THAT. I was tempted to start helping the man out after the first hour, holding on to all the restraint I had in the world just to keep myself from yelling out "for the love of all that's holy, please, someone get the man a pee jar!" Finally a pee jar was mercifully delivered, at which time the requests for tissues began. Apparently at some point during the begging for the pee jar, this man had developed quite a bit of mucus, mucus which was seemingly coming out of this man at an alarming rate which if a tissue didn't appear soon, he would be forced to spit it on the floor. Thankfully, one of the nurses responded to this request quicker than they had the previous, I suspect in an effort just to shut him up rather than the fear of him hockin a lugy on the ER floor. Welcome to hell.

By 7am I had to send Chris home since he had to be at work at 8:30am without having slept a minute the last 24 hours (at the time this is being written, he is officially running on 36 hours of no sleep). God bless that man. Honestly, he is way to good for me. At this point, I'm shuttin down. I'm tired, in pain, and just over it. I laid curled up quietly holding back tears for the better part of an hour. Its at that point my mom's sister Patti showed up and the flood gates opened. After a good cry, a phone call to the parents followed by another cry, and a total of 9 hours in the ER, I was FINALLY told they had a bed ready for me. Just in time for lunch.

For the next few hours I settled in - ate lunch, talked with doctors, couple more blood draws and caught up on the IV meds I missed during my stint in Orlando's version of Alcatraz. Our current treatment plan is some modifications to some medicines that seem to be thinning my blood too much, upping my Vit K and ordering a consult from the hematologist for tomorrow since latest blood work has come back showing a low platelet count. Not something that is unusual for me, but something we're hopeful will slow down or stop these bleeds. We're hoping that all these small changes in my treatment will give my lungs a break for a while so I can focus on regaining my strength and packing on some of those ellusive pounds I'm always chasing after. If this doesn't work, the next step is another bronchial artery embolization, which Dr. Layish really doesn't want to do right now.

And thats where we're at. Im tired, sore, and need a nap.

So now, I'm going to ask for what we always ask for. Your thoughts and your prayers. I'd like to ask for you to specifically pray for my husband Chris. He is amazing. His strength, patience and positivity is amazing. I truly know that without him, I wouldn't be here today. He needs your prayers for strength as he travels back and forth from the hospital, work and our house surviving on just a few hours of sleep at a time. He saves my life everyday, in one way or another and I am so thankful he's mine. Please pray that he knows everyday how much he means to me and my family and that even though I may not say it everyday, that he means more to me than anyone ever could and that his sacrifice, his dedication to me and to us never goes unnoticed.

Thank you for all the love you have shown to me, Chris and my family. Its holding us up and carrying us through this journey. We appreciate every text, call, email, and post that shows us that we are not going through this alone. Please know that each one does not go on noticed. And please keep them coming...this journey has - God willing - just begun.

Much love...E