Good Luck Charms

My good luck charms! In the background is the brown leather coinpurse that was my Grandma Coning's. Attached to the coinpurse is her lucky rabbit's foot. This is what my mom had brought home to me last year hoping they would bring me luck like they did my grandma. Tucked inside the coinpurse was a bright butterfly pin (in the center). This was before my "butterfly connection" with the lungs. On the far right is the butterfly necklace that was once my Grandma Neff's. This was my "first" butterfly given to me when I was 13 years old from my grandpa; something to remember my grandma by. I have kept her necklace with me always in a pocket of one of my purses since the day I received it. Lastly I have my necklace "Miracles Happen"...that I just had to have once I saw it (thanks, Lesli!) :) to tie together my "Warrior Grandmothers" and myself. Past, present, future kind of thing I guess. So all of these things, I tuck into the leather coinpurse and keep it with me at all times. I wonder if I can take it into surgery with me?!? ;)

If you happen to wonder what in the world I am talking about with my above photo, you may need read my blog entry from December 24, 2011. Or the link here: http://karadidier.blogspot.com/search?updated-min=2011-01-01T00:00:00-05:00&updated-max=2012-01-01T00:00:00-05:00&max-results=11. This will explain my love of butterflies and the connections I have with them and my grandmothers. I feel they are up there helping to put the finishing touches on my wings. I know they are my guardian angels! I feel like my time is coming soon...I hope that I am right...I know that with their help I will make it through everything with flying colors.

Doug and I will go back to Cleveland on Monday for a day full of tests and appointments. We're going up that morning (leaving really early...ugh!) and my last appointment is scheduled for 3:30. However, a "lung friend" of mine that also goes there and is also on the list just had a day full of appointments yesterday and said that she had to wait 2 hours for one of the same doctors I am seeing. Yuck! I hope this isn't the case or it will be an extremely long day!! Doug and I will look like quite the sight...him pushing me in a wheelchair with my oxygen and his right hand in a cast! :) I will update next week after my appointments and tests. (will have a few short posts on Facebook I'm sure...so check that out if you can!) May not be until mid-week here on my blog as I will probably have to recover a day or so from the days events. Have a great weekend everyone! <3

The Waiting Game

The waiting game is really no fun. I feel like I am pregnant all over again anxiously waiting the arrival of my "new bundle of joy"...yet this time I do not have a bun in the oven and am waiting on "my new wings" instead. Just like being pregnant though, you just don't know when it will "be time"....and I may have a "dry run" (or two, etc) just like there is false labor. I told Doug I'd rather be having a 4th child rather then waiting for lungs and going through surgery. The look he gave me told me he was glad I was having a transplant instead of a 4th child! (I secretly think he would rather it be the other way around too even though he won't admit it!)

Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12

I haven't really had a whole lot of time to think about getting "the call" over the last week and a half because a week ago Thursday Doug broke his right hand. Since I require 2 oxygen tanks on continuous flow when I leave the house; Doug's dad came to take him to the ER, to the orthopedic doctor appointment the next morning, and then to have surgery this last Tuesday. Even though I am very thankful that his dad was able to do all of this for him, I was a little bummed that I wasn't the one there by his side through it all. I mean, he got his very first IV and everything! :) I joked with him telling him that he broke it on purpose just so that he could get attention since I'm the one that everyone asks about. :) I also told him he was jealous about my surgery and had to hurry up and do something so that he could have a surgery before me. With a roll of his eyes, he was in agreement with me. :)

So Doug breaks his right hand making it so he cannot work for the next 6 weeks. Coincidence that he has this time off? I guess we will see over the course of the next 5 weeks! I do think that this was God's way of telling him to slow down some....take a load off...relax a little. Too bad we can't take a little vacation somewhere. He was in quite a bit of pain after his surgery and for close to 2 days after, but is feeling "better" now and has been out and about. Me on the other hand, I haven't left the house since my last doctor visit on May 28th. Yep. Almost a month. I'm going crazy I think. There's only so much TV you can watch...Internet you can look at...books you can read....

I go back to Cleveland July 2 (if I don't get "the call" beforehand!) for the regular round of tests and appointments. We'll see what my numbers are and if it will affect my place on "the list". Doug wanted to set up a bet where everyone guesses when I will get "the call". I told him since I got the call for listing on Austin's birthday (June 12) that I will get "the call" for my lungs on Alexa's birthday (July 19). He said he hopes it isn't that long. Doug said he thinks this Thursday or Friday (meaning yesterday or today)...there's not many more hours left of Friday, so I doubt he wins. Cameron said July 4, which may be more on because we go to Cleveland on July 2 and I told Doug that with our luck we will go on the 2nd, come home, be home for a day and then get the call to drive all the way back up there. Not that I would complain or anything. That would just be our luck though. To which we thought that when we go on the 2nd that we will take our overnight stuff with us at least just in case...who knows, maybe I will get the call while we are up there that day! Alexa said May 1....to which I gasped and said that I sure hope it's not a whole year almost...to which she said she didn't mean May and then she never really said a date.

I know He is still working on making my perfect wings and these things cannot be rushed. I do hope that He finishes soon though because there are so many days that I do not know how much more I can take. That's when I pray and I know that He is with me, taking care of me, reminding me to stay calm and know that He has it all taken care of. This calms me and helps me get through the extra hard times, and I envision what it will be like when I can finally breathe easy again.

I had a visit from my Grandma Coning last night. She and I rode bikes together down a long stretch of road. I was taking her to some special grocery store (not sure what we were going to get exactly) and talking to her along the way. I was "normal"...didn't have my O2 on, wasn't sick...and she was how I remembered her when I last saw her out in Arizona. Sweet, small, smiling, loving, quiet. I remember thinking in my dream that I couldn't believe grandma was riding a bike beside me in her condition! Along our way we spotted some cardinals and I smiled and pointed them out to her and asked her if she still liked cardinals now as much as she did then. She smiled and nodded yes. I told her that I missed her and that I was enjoying our bike ride together. She smiled and nodded again, and gave me a wink. Grandma would sometimes give a wink with her contagious smile...especially when it was something she also was enjoying. I asked her is she was still singing...something that she always loved to do here on Earth. She smiled and said, "Oh yes!". (the only words she actually spoke)We reached the end of the road and never found the store I was on the lookout for. We were going to turn around and look for it on the way back when I told her I needed to use the restroom before we started back the other way. Then for real, I woke up to need to use the restroom. Bummer. I tried to get back to sleep so I could "catch grandma" for the return bike trip but I was unsuccessful. In fact, I couldn't get back to sleep because my chest was hurting so bad. It was like I had been riding the bike. I pray that my new wings come soon!!

Officially Listed!!!!!!!!

Today at 1:25 pm EST I got the phone call from my transplant coordinator telling me that I am officially listed for my double lungs! I have officially left my caterpillar stage and am now in my cocoon waiting for God's perfect timing so I can emerge into my new life. A new life filled with my same hopes and dreams, but a new appreciation for everyone and everything in it. My life was forever changed when I was diagnosed in December 2010 and since my life has resembled that of the caterpillar making it's journey into becoming a butterfly.

If you remember too, both of my grandmothers who were near and dear to my heart left such an impact on me. I was given jewelry of theirs that were butterflies and realizing this at the beginning of my journey has given me the image that they are with me...and I feel their strength carrying me through the rough times. Not only is God with me, but I feel both of my grandmothers there as well. (and my Grandpa Coning...but I feel my Grandma Coning much stronger) :) I also have my Grandma Coning's lucky rabbit foot that she kept with her. She was always so lucky, and Doug tells me I am lucky too (and I am)...so I no doubt have my Grandma's blood running through my veins. I no doubt will make it through transplant and beyond with flying colors. I am going to emerge from this cocoon stronger then ever!! All in God's perfect timing. I know I have to wait, and wait I will. Hopefully it won't be too long, but I know he is creating the perfect wings for me and it can't be rushed. If it's rushed, the wings won't be perfect and things could go wrong and we don't want that!

This is me...I'm finally in my cocoon! :)

Which reminds me of a story of a man that found a cocoon of a butterfly. The story is this: A man found a cocoon of a butterfly and one day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to squeeze its body through the tiny hole. Then it stopped, as if it couldn't go further. So the man decided to help the butterfly. He took a pair of scissors and snipped off the remaining bits of cocoon. The butterfly emerged easily but it had a swollen body and shriveled wings. The man continued to watch it, expecting that any minute the wings would enlarge and expand enough to support the body, neither happened! In fact the butterfly spent the rest of its life crawling around. It was never able to fly. What the man in his kindness and haste did not understand: The restricting cocoon and the struggle required by the butterfly to get through the opening was a way of forcing the fluid from the body into the wings so that it would be ready for flight once that was achieved. Sometimes struggles are exactly what we need in our lives. Going through life with no obstacles would cripple us. We will not be as strong as we could have been and we would never fly.

So my coordinator told me that my score is 39.54 and that is a pretty high number for the first time. I am in the top 25%. A score of 48 and higher would be the top 10%. I do not know when I will get my transplant...there is no way of knowing. It could be later tonight (wishful thinking)...could be tomorrow...could be next week...could be next month. We could also have some "dry runs" where we will get a call, perhaps get to Cleveland and then find out the lungs aren't good for me or something else comes up. I do know that even though I am happy to move on to the next stage I am also sad because I realize that someone else will be losing a life. Another family will be losing a loved one. All in order for me to live my life and my dreams. This is such a great sacrifice that anyone can give and I will be forever thankful to my donor and their family should I be blessed with a new set of wings.

That's it for now folks...I've got a bag to pack and a list to make to have ready just in case I get "The Call"..... :) Love to you all from Kara the Caterpillar :)

Random Thoughts and my BO BFF Club :)

Lots of emotions over the past week. I'm feeling some what better from my latest hospital stay. My chest is still pretty tight and the nights are worse then the daytime for me. I'm also concerned now because I had to drop my prednisone pretty quickly. I've been on 20 mg for quite some time. When I drop to 15 I start to get achy and start feeling horrible and it seems that's when I end up getting sick. Well, my latest hospital stay I was given the IV steroids, which were mega doses...and was sent home on a taper. So I was to do 60 for 5 days, 40 for 5 days, 30 for 5 days, then 20 until told otherwise. This taper should've taken me until the end of June I believe. When my coordinator called me last week she told me I needed to drop sooner then that so I could be listed. I was almost on my last day of 40 but instead was told to go immediately to 20 for 5 days and then to 15. Today was my last day for 20 mg. So I am really dreading what is to come. I pray that it won't be as bad as I think it will be. :)

I feel cut off from the world most of the time and bound to the house with my 50 foot oxygen cord attached at all times. This weekend was our town's festival of Poultry Days and while most everyone was out and about enjoying themselves I was taking up residence on my couch. Not like I wanted to be in the heat and humidity over the nice AC...but the socialization is what I miss the most....and not like I can do a lot of that now because my immune system is so low and I don't want to catch anything that would land me in the hospital! So a little bit of depression here because my life as I knew it never was and never will be the same. Ever. Doug's sister and her family brought some steaks over last night and Doug grilled them and I even went outside to sit (under an awning and had a fan on me!) and eat. It was hot and stuffy, but I hadn't even stepped out of the house in almost 2 weeks! Can you imagine not leaving your house in that long? I couldn't go too far on the patio, but was able to sit outside for a little bit. I was amazed though that while my oxygen was pretty good sitting outside in the heat that my pulse was in the mid 130's just sitting there. When I did go back inside, my pulse did go down to the 110's which was much better for me. I ate too much for dinner; even though my portions are still pretty small. I can't eat a whole lot at one time. Anyway, I ate too much and felt sick for the rest of the night. I was able to get a good nights sleep for once though...probably the best in a long time really. I woke up later then usual and was still tired when I woke up but as the day wore on I felt pretty good.

I got online tonight after Doug left for work and started chatting with Brandi, whom I call my BO BFF. BO is short for my (our) lung diagnosis Bronchiolitis Obliterans. She is the same age as I am, and has the same diagnosis as I do. While I hate that anyone has to go through what I am going through and what she is going through, it is also nice to find someone else going through it to share it with. God blessed me with finding her so we can get through this process together. Someone had created a photo for her on Facebook to pray for her to get better...so I shared it on my wall too. She and I are chatting back and forth and along comes another "lung friend" from our Facebook lung transplant (pre and post) group whom also has BO! So chatting back and forth with her I have also gotten excited to have "found someone else". Although she has had her transplant and is 10 months out and thinks she is in rejection with BO. So this doesn't make me very happy. Especially for her...my heart goes out to her and I hope that things turn around for her and the doctors are wrong. One thing about after transplant is you can get BO as "rejection". That's usually how most people get BO...it's rejection from their lung transplant. There are some of us that have BO as our lung disease...and so there's the possibility of BO as rejection after transplant. This is what has possibly happened with Annette. (the"someone else" lol) In chatting back and forth with her, our stories are very similar. There's also Angela in the "BO BFF club" that I believe I may have started. haha. Angela is Brandi, Annette's and my shining star of hope. She is post transplant a few years and doing great! She's been there and done that and it's nice to be able to ask her questions on things I could possibly expect to happen or not to happen. These girls "get it" when no one else can quite possibly understand. We want so bad to live and we all have faith in God that He will take care of us and all will be as it should.

I was a little disappointed today though. I thought I was going to get an "official" call of being listed by today but I didn't. I can't say that I am depressed about it right at this moment because I don't feel that way at all. I know that I will be listed very soon here because they said I would be. I have no doubt about that. Just disappointed that there was no call. I told Doug I may try and call tomorrow just to check on things. But I don't know if I will. Maybe I will just wait it out. My coordinator said she would call, so I have no doubt that will happen. I did get my next set of appointments for Cleveland...I will go back July 2.

On a side note, Austin turns 15 tomorrow!!! I can't believe my oldest is going to be that old! I am so very proud of the young man that he has become. He does drive me up the wall quite a bit...what teenager doesn't, right?? But I couldn't ask for a better kid. He is loving and kind (when he wants to be) and a good brother to his sister and brother (again, when he wants to be, lol!) I have really missed out on his sports over the last 2 years because of my disease and I am just ready to be well again so I can go cheer him on with the rest of the parents. I hate not being there to support him. He is an awesome baseball player and found a new passion with wrestling in which he is excellent at! It's hard to believe he is going to be a sophomore next year and will be driving soon. Time sure flies. I am so very proud of him and love him to the moon and back.

Grandpa and Grandma Neff with

Austin, Alexa and Cameron May 2012

Just learning some more patience I guess until I hear I am "officially" listed. I do have a better inner peace about how things are and how things will be. I am still anxious about it all but am trying to get in a better state of mind and just trusting in God that everything will be ok and soon. I pray for my "BO BFF's" and that we will all be able to take a road trip and meet up when we all have our new wings and don't have to wear our oxygen or our masks!

Patience is a Virtue (Part II)

Wow! Amazing what trusting in God for patience can do for you! I admit on Monday I was feeling so down and wanting to call Cleveland because I had no patience. Why wasn't I the priority??? Why weren't they calling me???? Did they even present me like promised?? Well, it's not all about me. I do know that. The world does not revolve around me or anyone else for that matter. I learned a valuable lesson in patience on Monday and am so glad that I trusted in not just God but in myself as well. It was rough but I waited it out and everything turned out just like it should.

So I thought that I wouldn't hear anything more until Monday, because the coordinator that called me on the 4th said that my coordinator would call me on the 11th with more details. God must've been so pleased with my patience that I got a phone call today from my coordinator telling me that she was just waiting on 2 approvals and then I would be listed! She said it could be as early as today and if it was she would call me back. I didn't get a call back from her, but I was totally not expecting her to call me today, that's for sure!! So maybe I will hear from her tomorrow. Maybe I won't. I'm just taking it a day at a time and what happens, happens. I'm not in control anyway, so why try? I'm just the one fighting to be here and hope that is what God has planned for me. I trust He knows what he's doing and His plan for me. Funny though how I feel "rewarded" today for my "good patience behavior" from God. :)

I can say that I am happy to be at this next step because each day is getting harder. It will still not be an easy road by any means after transplant either. I know my emotions will be all over the place in the coming days/weeks/months not knowing when "The Call" will come. If it will be the real deal, or a false run. Not only that but knowing that someone else has to die in order for me to live also saddens me. I realize this is just life and how things are, but it doesn't make it any easier nonetheless. I am a donor too and so it could very well be me saving lives instead of the other way around! Who knows! Only God. It is my hope though that I am listed soon, I get my new wings soon and I can take hold of my new life and live every single day for me, my family, God and my donor family.

God Bless everyone in my life.....I feel so lucky to have been blessed with so many great people in my life. Doug had to laugh at me a few weeks ago when I was being transported from Good Sam to Cleveland. Well, not really laugh at me...but I had the nurses all giving me hugs before I left. He is always making the comment...what is it about you that wherever you go people get attached and hug you and like you so much? He wasn't being mean of course...he's witnessed countless times people just gravitate to me. I didn't really have an answer. I don't really have an answer now. I try to be positive. I try to always have a smile on my face which is hard to do most days....and I'm just a huggable person I guess! ;)

Patience wasn't really with me in Cleveland on Memorial Day though. I had enough and was ready to come home so I could see my family before they left. Crying helped to push things along. :) I got the chance to spend a little bit of time with them!!

May 29, 2012 My mom, dad and me!

Day after coming home from Cleveland.

Me and Theron, my big brother! :)

My face and neck is huge from the trapped air trying to

make its way out of my system. :(

Aunt Sue and me!

My most favorite aunt, miss her bunches! :)

Patience is a Virtue....and....The First Call!

It is amazing the mix of emotions in the big bag of the transplant world. Obviously no one wants to have a transplant; but obviously a lot of people need them. There's a fine line between being too sick, not sick enough, etc, it is so confusing and toys with your feelings and emotions quite a bit. It's not as simple as...yeah, your lungs are crap, you need new ones, let's schedule you for next Wednesday and we'll get you all fixed up good as new. I wish it was. Maybe some day it will be. But this won't happen in my lifetime.

Each time I am in the hospital and I come home it is really hard. It is hard when I am in the hospital because I have such anxiety about what is to come. I am getting better and it is a work in progress though. I have leaned on Doug a lot and I do not know what I would do without him. He is an amazing man that God has blessed me with and he has put up with so much over the last few years with my illness. My hospital stays in Cleveland are the worst because he goes so stir crazy and they are bad for me because my anxiety goes so high that there are times I do not even want him to leave to get a bite to eat for fear of something happening. Crazy, I know because I am in the best care...and I also think of some patients that don't have anyone staying with them at all. So I am so lucky and so blessed and he deserves a medal of honor when I am all better again. :) When I come home from the hospital it also takes me a good week before I feel somewhat "normal" again. It's hard because I don't feel like talking or conversing much and for those of you that know me well, that's what I LOVE to do! ;)

So this patience thing. It's always been a struggle for me. I believe it is a struggle for everyone really. Who wants to be patient in a world that you can usually get what you want when you want it? I have learned patience since being diagnosed in December 2010. I've had to. At first my disease was barely noticeable and for everyone that knows me and how I've always been on the go and fairly healthy was blown away at the insanity of a lung transplant. Believe me, I was more then blown away. I started out losing weight thinking it was stress only to find out that my immune system was attacking itself. I looked fine on the outside, besides losing quite a bit of weight at the time (can't say I can complain there) ;) but on the inside things just weren't good. I was in denial for quite some time. To be honest, I think I was still in denial up until my latest hospitalization at Cleveland when the surgeon came in to tell me I was a good candidate and started explaining things and I thought I was going to vomit all over him. That was the point for me that it was all real. All going to happen. This is it.

I've known I've been declining slowly...just was hoping for some miracle that I wouldn't have to have surgery. Transplant is really no cure. It's a fix. I hope the fix will let me live until I am way way old! But there's just no way to know. Everything about transplant is scary but if I don't have it I do not like the alternative. I would take 5 more good years of breathing easy with new lungs over the last 2 years of being scared just doing daily things that make me short of breath, raise my heart rate, lower my oxygen. I am very hopeful with my lung transplant group on facebook. There are so many wonderful people on there with a great amount of support. There are so many of them 10, 15 years post transplant and that makes my heart sing with hope that this will be my outcome too. God is creating the perfect new set of wings just for me. I just needed to be patient. When I first heard I needed a transplant I wanted to do it as soon as possible just to get it out of the way! :) But have since come to my senses (thanks Doug and others) that just because I want it right now doesn't mean it should happen right now. Course, I think everyone has this mentality...if you can fix it,do it already! ;)

So on the the patience part again. Like I said, I've always struggled with it. My case was discussed in Novemeber 2011 and "declined" at the time because I wasn't "sick enough". I was disappointed but told myself that God had a plan and it wasn't time yet. My local pulmonologist though has wanted me to be listed quite some time ago...so I feel torn between him and Cleveland. When I was hospitalized at Cleveland in January they said they were going to list me then. I got my hopes up. Waited. Nothing. They waited until my February visit to see how I was and said that they were not going to discuss me at the time because my numbers were still "ok". So waiting until my May 7 visit to the clinic to see how I'm doing. I actually thought I was doing better, but I had actually gotten worse. My numbers all went down and Dr. Lane told me that they would discuss me that month (May) because he thought it was time to get me listed. He told me I would likely be low on the list...but my numbers and declining health with more need of oxygen warranted me to be on the list. I was starting to see the light here....then I end up in the hospital about 2 weeks after my clinic visit and was told I would definitely be listed. So I got real excited...and nervous too...and all of you out there supporting us through this journey got excited too. So I jumped the gun in saying I would be listed. Yes, I was told this, but I didn't have it in writing, so I am learning that until I see it in black and white I am (or should) just keep my mouth shut! I wasn't really listed while in the hospital (like I was told I would be) because I ended up having RSV. I was told the infection would have to be gone before I could be listed. This could be days, or weeks, or even months. Regardless, I was told that I would be part of teleconference discussion about getting me listed  (due to the holiday) but that didn't happen because of the RSV. I had to have bloodwork Wednesday May 30 and also an RSV swab and dependent on those would determine if I would get listed. I found out that day the RSV was negative so I would be listed!!! Again, I assumed I would be discussed as soon as possible...which would be June 4 since they meet every Monday. I emailed my coordinator on Thursday about a few things and also about when I would be discussed and she said not the 4th but probably the 11th. I was so brokenhearted! There's the patience again...I pleaded with her and said my RSV was negative and didn't understand why I was being put off again. She emailed back on Friday saying she and Dr. Lane fought for me and that I would be discussed on the 4th and she would talk to me then.

Anytime I've been discussed I've gotten a phone call early in the day so I thought yesterday would be no exception. The doctors would meet in the morning, calls by the afternoon and all would be great and wonderful with the world. Ha! My mom sent me an email though that helped me through the day. I want to share a tidbit of it here.  (hopefully she doesn't care I am sharing. :))

Dear Kara,
As I was reading the Upper Room this morning one of the posts spoke to me for you too and I wanted to share. It is from a guy named Adam from Dublin, Ohio. His writing is like the Psalms and is always a tribute to God. He says:

     "Good morning God. A beautiful morning has arrived. The anticipation of my day with You is so fulfilling to me. Just to know that You are here with me and love me is where I draw strength to make it through the day. Living inside Your love today will give me the breath I need to take each moment and make it wonderful. So draw near and let me feel You touch my soul. Let me breathe You in and hold You inside me. Show Your glory. For I love You in Ways I am yet to know or understand. Thank you for loving me so completely".

    I hope that this brings you some comfort-I especially liked the parts about "living inside Your love today will give me the breath I need" and "Let me breathe You in and hold You inside me." God is with you and He loves you!  
 (Still crossing my fingers and saying prayers)! :-) <3 Mom xo's
So I started again with patience. When 5:00 rolled around I was sure I wasn't going to get a phone call. Another "lung friend" that also goes to Cleveland told me she didn't get a call for her listing until 6:30...so I still had "hope" I would get a call but had doubts too. 6:30 came and went and my mood was very bad. Normally, I would've emailed my coordinator or would've called her before the 5:00 time. But I kept praying for patience and wanted to trust that things would work out like they should. I had actually written out an email to my coordinator asking if I was even discussed that day. I really had my doubts that I was. I figured I was pushed off. But I didn't press send. I prayed again and asked for more patience. I did tell myself if I hadn't heard anything by Tuesday afternoon I would call or email! haha! A call on my cell phone made me jump but it was from a friend wanting to bring food by (thanks, Brenda!!!) that lifted my spirits some but I was still bummed...it was 7 pm and I had heard nothing. Then lo and behold the other phone we have rings and it was Cleveland! I couldn't believe it! It wasn't my coordinator, but another one making calls. She apologized for the late call and said that I was discussed today and that it was agreed by Dr. Lane and Dr. Budev and the others that I definitely be listed for transplant! She did say though they wanted to wait until next week to do the official listing to make sure that I am completely over the RSV. My coordinator will call me next Monday with more information as well as what my lung allocation score is. I will also go back to clinic in 3-4 weeks to meet with Dr. Budev.

So patience is a virtue after all! Imagine that! :) I learned a great and valuable lesson yesterday in patience and trusting God more. He is the one in control. We are not. Deep down I know that, as we all do...but it was so much more validating yesterday waiting it out and not jumping the gun. So now I have to make it until next Monday when I will be definitely listed. (hopefully....for real this time...)and then it will be the unknown of "The Call" for new lungs. That will be a whole other sort of patience!

God is pretty amazing and I know he will carry me through. I also feel so blessed to have so many wonderful family and friends supporting and loving us though all of this. Doug and I just cannot thank you all enough for everything that everyone has done for us. We love you all!!

Latest Hospital "Journey"

So I ended my last blog with my "craziness" being at Good Sam and not knowing that I was actually headed back up to Cleveland. A CT of my chest (at Good Sam the next day) showed that I had more air trapping then what was there in January. (Pneumomediastinum...air between my lungs). Good Sam was ready to do a chest tube to relieve the air but Cleveland disagreed and wanted me to be transported up there to be admitted and watched. So we waited and waited for a bed to open at Cleveland and I got there about 11 that night. No chest tubes were done. Once I got there to Cleveland they wanted to do an ABG (arterial blood gas) on room air to see where I was at O2 and pCO2 levels. I was taken off my 4L for I would say less then 5 minutes and blood was drawn. The woman drawing the blood grabbed me an air mask and put it to my face right away after the draw as I was starting to have a hard time breathing...which was reason because my O2 reading was 49! (Normal is 85-95) My pCO2 was 55, which is on the high side, normal is (34-46). When she had come back with the results they were afraid that they did just a venous blood draw and not arterial...but nope...it was arterial. So scare #1 right there, but I "recovered" and was able to get a little bit of rest that night despite everything going on around  me.

I was swabbed to see if I had RSV...which I did end up having...so that meant that the nurses and doctors had to gown and mask up before coming in. Doug did not have to because he wasn't seeing other patients on the floor. So that was a little annoying having to try to understand these doctors behind their masks. :) So I was told that I would be listed, but we first had to get rid of the RSV because I couldn't be on the list and have an infection. Once they found out that I just had RSV, Infectious Disease said that I would be able to take the antibiotic in pill form and we could stop the IV antibiotics. Yet it was the weekend...a holiday weekend to boot and no one at the Pharmacy could ok insurance approval for the pills. Each pill was $260 and I needed 30 of them! If I was in the hospital, the pills were covered, so they were the only reason holding me there. Doug did find a loophole, saying if a doctor talked to the insurance for the Pharmacy that it could get okayed faster and I could go home. (they were telling me 2 days which would be Tuesday after Memorial Day). Here it is Monday and it just stunk knowing all of my out of town family that I hadn't seen in a year or more was about ready to leave and I hadn't even seen them!

So one of the transplant doctors comes in Monday morning and tells me that it would be another day because they just couldn't get the insurance approval. So I had a mini breakdown. I hate to cry in front of people at all but I just couldn't help it. I told him I didn't understand...told him about my family (again) and how important it was that I try and leave that day, not on Tuesday. I think he was taken back a little and did say he would try but he had so many other patients, etc...but he came back later and said if we could swing a small amount for the pills I could be released. Yay! well, I didn't get too excited because I still felt like it wasn't going to happen...my heart rate was still pretty high. I kept lying down to rest hoping to get it to go down. He comes back in  to tell me they can't let me go after all because of my high heart rate. I got upset again because it had been high the entire stay, yet now this is going to keep me from getting to go home??? I told him this and asked if I could get it to go down if he would consider letting me leave later that day. He prescribed a pill for the heart rate to try and agreed to wait and see. Doug left to make some phone calls, I fell asleep and the nurse came in about an hour later telling me the doctor was discharging me! Whew!

Got home late Monday night and was able to see my parents, aunt, brother and sister-in-law for just a little bit and was so happy! I was able to get some rest that night...thought I was still in the hospital...but was able to spend some more time the next day with everyone before they left for town the next day. I was very bummed I missed out on my niece, Allison's graduation festivities. Such a special and fun time in life and I wasn't a part of it. :( I was there in spirit but that's just not the same. Everything "worked out" but I still would've liked more time with everyone. I overdid it a little with the talking, because my face and neck blew back up with the trapped air, but it was well worth it. :)

My last week has been recovering and I am feeling better then the previous week. I need to take it easy and stay in as much as possible so that I don't get sick. I also have to be very careful of those that may come see me..any trace of a cold or flu stay away! (No offense!) :) I'll be wearing a mask a lot more even in my house with visitors so don't take offense if I pull it on while you're here. :) I'm still stubborn in putting it on, but now that I am going to finally be listed I am going to be wearing the masks a lot more because I just can't take the chance in getting sick and being pulled off the list!

Butterfly wings, here I come!!!