Showing posts with label bronch. Show all posts
Showing posts with label bronch. Show all posts

Tuesday, September 25, 2012

10 years, amazing people...one lucky girl.

This past weekend was my ten year high school reunion. Ten years. When I think back of what my life was like, what I was like....I can hardly believe it. So much has changed. The usual things have changed for all of us - big moves, marriages, babies, jobs - but my life, well its been a little cray cray. Going from completely healthy and normal, to spiraling towards death quicker than I think any of us actually realized at the time, to getting a second chance at a normal life after this transplant...well its been quite the roller coaster. Unfortunately, since I am still going through rehab and recovery here in Jacksonville I wasn't able to attend the reunion, which seriously bummed me out. I don't think lots of people really look forward to reunions, but I truly loved the Albemarle High School class of 2002. We had some awesome memories from those years and I was able to experience it all with some seriously awesome people. I really hate I missed it. But, if I had to miss it for anything, I guess a double lung transplant is a good enough reason! And hey...hopefully this transplant will get me to our 20th reunion!




AHS Class of 2002 10 year reunion - only about 1/3 of the class, but some awesome people turned out. And thanks to my girls for bringin my picture so I could make an appearance in the photo! LOL!!


While thinkin about all I was missing out on this weekend, I started thinkin about all the incredible people in my life. Ones who have been in my life since I was a child, to the ones who have been more recent additions. I realized that even though things haven't exactly gone perfectly over the last ten years, I have gotten through it and have been showed grace and blessings from God more times than I can count. And those blessing start with the incredible support system I have developed over the years. From family, to friends, to medical professionals - I have acquired an amazing group of people around me that, without every one, I wouldn't be here blogging about how incredible my life has become right now.




Me the week before my transplant - skinny, weak, on oxygen almost 24hours a day, and in a lot of pain. Very sick. Couldn't hardly stay awake to eat.




Nearly 7 weeks post double lung transplant - lots of color in my face (no more sickly gray), no more oxygen, gaining weight (20lbs and counting!), more energy than Ive had in years! Feelin Awesome!


I decided that this post should be less about me and more about a few incredible people in my life. People who have gone above and beyond these last few months to show me and my family an incredible amount of love and support. Way more than I deserve I can tell you that. There are many more than just the few I'll mention here today but trust me - before this is all over you'll hear about them all! In order to express our gratitude to everyone, it will def take more than one post.

The first group are my amazing girlfriends from Albemarle. Ive know these girls since I was very young. We have pretty much grown up together and been through A LOT to say the least. Our lives have changed so much the last few years - moving away to different towns (and in my case states!), weddings, babies, deaths of loved ones (we have seriously experienced the entire dang circle of life together). We are all spread around so getting together isn't very easy and only happens every so often. So you can imagine my surprise when I walked down to the lobby of our hotel the night I was discharged from the hospital after my transplant to see the sweet, beautiful faces of my best friends in the world - Janna Brown, Lisa Wray, Katie Adams, Adrienne Averette, and Sallie Spencer (we were minus one that night until later when Brittani Edwards arrived to further surprise me the next day!). I quickly dissolved into tears, something not very characteristic of me, and remained in complete shock for the rest of the night. Their presence right after the most life changing and stressful and amazing surgery of my life was EXACTLY what I needed. They will never, ever know what it meant to me that they had road tripped it down to see me, at the time not even knowing that I was out of the hospital yet. Ive loved these girls practically my entire life, but at that moment I honestly had never loved them more. And to keep the surprises coming, they had ordered these awesome bracelets and were all wearing one when they arrived. The bracelet they gave me is one of my favorite things in the world and I wear it EVERY DAY. It seriously hasn't left my wrist since I put it on that night. The bracelets are silver with the words Hope - Love - Breathe engraved on the outside and my initials engraved on the inside. They had actually ordered them from someone who was selling them to raise money for a family friend whos child has cystic fibrosis as well. So it not only meant as a symbol of support and love for me and what I was going through, it also helped another child with CF and that is so awesome. Did I mention that I love these girls? I do. A lot! We were able to spend most of the rest of the weekend together which was so much fun (albeit exhausting). It was the best possible to spend my first weekend post transplant and out of the hospital. I will never ever forget that time.




The awesome bracelets my sweet girls had made to show their support for me. I absolutely LOVE them - both the bracelets AND my girls LOL!





Dinner at Taverna in the San Marco district in downtown Jacksonville...super yummy and fantastic company! Couldn't have been a better day!


Another group of people I want to say a special thank you to is a group I am not going to name names specifically. Im not sure if that would make them uncomfortable or not, so to these people - and you know who you are - please forgive me for not naming names. These wonderful people have sent cards, gifts, gift cards, and financial donations to us in the last few months and we cannot begin to tell you how incredibly thankful we are to have each and every one of you in our lives. The contributions and kindness you have shown us has made these past two months so much easier to get through. Almost daily, a card or letter shows up in my mailbox with such incredible words of love and encouragement. I have saved each and every one of them and will keep them forever. They have carried all of us through this and we covet the love and prayers that have so generously been bestowed on us. Please know that we will never forget your generosity and we keep you all in our heart and prayers daily. You'll be hearing from me directly soon enough, but I wanted to be sure you all knew what an impact your support has made in our lives.

Also, right now are a few groups of people who are organizing fundraisers on our behalf. I am going to be honest, this actually makes me slightly uncomfortable. Having so many people coming out to support us - while absolutely amazing and overwhelming - is still embarrassing for me. I just keep wishing that it wasn't something that was necessary. But at the same time I am SO unbelievably humbled and grateful to everyone who is organizing and participating in each. We will never ever be able to express our overwhelming amazement at the generosity of so many. It is absolutely amazing the hearts of people. God continues to bless us, through all of you, and it is my fervent prayer that the blessings you all have given to us are returned to you in a huge way.

Thanks for indulging me a little tonight. I have tons more people to thank, but I want to make sure I can do it right and by trying to fit too many in on one post seems like it would get watered down a little. And the thanks we have for all of you is NOT something that should be watered down. Annnnd Ive got another day full of blood work, PFTS, xrays, and the ever exciting bronchoscopy tomorrow. I hafta be up and at em and a terribly ungodly hour, so its time for me to get some much needed sleep. My sleep patterns are still very crazy, so please send up a few prayers for them to regulate a little more, and of course, for positive results from the bronch tomorrow. I haven't had one in three weeks, and I am super nervous about what they will show. Ive been feeling great, and the fact that they feel Im doing good enough to move them from once a week to once every three weeks is a good sign, but still....going that long makes me super anxious. I feel a shaky, sweaty Erin comin on as I wait for my results LOL! So fingers, eyes, toes and anything else that be crossed for luck - please! I'll post more hopefully tomorrow, depending on how I'm feelin post bronch. You never really can tell. Last time I was OUT for like 6 hours. Time before that it was only an hour. So, we'll be playin this one by ear! So till then, I hope all is well for everyone! Nite all! :)




My good friend THE BRONCH...ahh we shall meet again soon my friend....


Much love...



Erin

Monday, September 10, 2012

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