My Moments to Breathe

Tuesday, July 23, 2013

Healing is almost over

It took over a week but all the medicine they pumped into me started to wear off and I am starting to feel a little bit more myself. My throat is still sore and voice a little scratchy, but nothing in comparison to what it was. My wrist is still bruised up and tender, but that one will just take time since it got so beat up. I still am finding tape marks and poke holes over my body, and emotionally (for some reason) that always stinks to find. The nightmares have been less and the anxiety of the phone ringing is starting to calm down. It is called healing.

Thanks to everyone who has sent wonderful words, thoughts, prayers and love. For checking on me, for taking Laila for awhile, and for just a smile when you see me. It has helped a ton. As my FB friends know, everyday I have been doing something "in order to heal" and it has helped, and this weekend helped so much. This weekend I had my bestie here from Michigan to just listen to me and help me do all the normal things that we love to do: eat, shop, drink, giggle, patio, mongo, pics, mongo (yes, again!) I love Tay so much, she never complained that everything in my head came back to the transplant....most people would have been annoyed, but she just let me talk and talk and vent and talk. Thanks BFFF, I love you a million!!

I am very happy for Jeremy because while I had my bfff, he got to have some brother time. And this guy deserves time to relax just as much as I did. He worked so hard on that Friday, and has been working just as hard every day since. He did everything he should have done, never letting me see anything but excitement come out of him. And since then, he has made sure I have been full of water, tylenol, that the groceries have been bought, cooked, cleaned and that Laila is content while I nap.  He is going to a Tigers game in Chicago tonight with his bros and I am sure he will be good...haha. 

We are both looking forward to (hopefully) take a few days of "the list" and take a vacation next week. If the weather is nice, we will be sitting on a beach, feet in the sand and listening to family around us. Talk about exactly what we need. We are looking forward to it very much. Very much. And after that I am not giving myself an excuse to be damaged anymore.

I will have to be ready!

Wednesday, July 17, 2013

So this is my story

I was/am just glad that I got uncomfortable at 5:00 am and rolled over to see my phone light up. Groggily, I looked at my phone to see why it was on and the word I had been waiting for was on my phone: LUNGS!!!  (yeap thats exactly what it looks like in my phone...) I flew out of bed and ran to the couch where Jeremy had fallen asleep. All I could do was nod my head when he looked dazed and grabbed his phone.

What are the chances that we both had our phones on silent/vibrate that night. We never do! But it doesn't matter because the Lord knew I needed to wake up so He made me roll over. I got the call! I can not tell you everything Amanda said on the phone because I was too...insert some emotion I dont know here...but all I remember her telling me was that they were "high risk" and wanted to know if I wanted them. It took 2 seconds to look at Jer and we both knew, this is it. They had tried calling both phones for over 45 minutes and every message left had a little more urgency to it. Heck, she was even trying to google Jer to see if she could get another phone number. But it doesn't matter because I did answer. So we had to "drop everything and get here as soon as you can."

So what to do first? CALL YOUR FAMILY. I woke mom up with a cracked voice, "Mom, I'm getting lungs. I got the call. I did it, I am getting lungs."...I rambled something to that nature and waited to hear that she understood. I didn't take too long. My dad was away for a guys weekend (sorry again for ruing it dad!) but luckily Angie was home so they could figure out what was best. Mom grabbed the first flight over (thank you Lord, for letting Angie be a flight attendant with some cool benefits) and Angie was on the one shortly after. Dad would come back to Ann Arbor, pack the car, get my Aunt and they would drive over. 

I wasn't sure what to do, what to wear, what to bring. Luckily my bag was packed, I threw on a Team Cassie shirt and some pants, brushed my teeth and I was "ready." We woke Laila up and I said my goodbyes...hardest thing ever. This is a moment I for sure am not looking forward to again. She was a trooper and we made sure she was happy and smiling when she left. She was going to be ok and she was not going to see me be scared. She is amazing and knew what her mom needed too!

Jer was geeked the whole trip over, smiling and flying and making sure plans were set and people knew what they needed to know. He made sure I was ok. Me on the other hand: I cried about everything from the fact that my nails weren't painted, my messy house, to the fact that I was messing up plans for so many people. SIGH I will handle that better next time.

We got there and waited...waited...waited. We waited. They took me up to B4 to wait and get lots of tests run, to make sure there was a cross match, to make sure I had the right drugs, to make sure everything was set for when my lungs were set. The nice thing is, once I was in my room, everyone and everything came to me. I didn't leave. That was my new home for weeks. I did learn that the tests, even though not fun...are ones that I can do and will be fine and something not to worry about. I took a shower with special soap, and I have to tell you, that shower was filled with many tears, inward screams and many man prayers. Dear Lord, please take care of me. The mouthwash tastes bad and yes that medicine that makes you have to pee, will in fact MAKE YOU HAVE TO PEE.

The cross match came back negative and everything was a go. They said they were starting the procurement at 2 and it would take about an hour, so I knew around 3 I would HAVE to be ready. Then it came, the double doors were opened, a nurse walked in and said, :"They are coming for you in 15 minutes." Almost a panic, excited, nervous, anxious, miss mash of emotions flooded me...and I am sure everyone in that room. We entered the biggest elevator I have ever seen and were headed to the holding area, the spot where I would have to say my final goodbyes and get a good look at everyone...make sure they all knew it would be OK, even if I ended up not being ok. 

It is crazy how the Lord knows what to do or who to send just to make sure you know he is there. First it was the "co-pilot" who was from non other than ANN ARBOR! Yeap, raised in Ann Arbor and whose parents still live there. He knew what neighborhood I was talking about when he asked where I had lived. Secondly, was the 3 very tall anesthesiologists who were rubbing sanatizer into their hands and staring at me like I was the zebra to their lion.  It made me laugh!

They wheeled me back rather quickly into the operating room...this room was amazing. It got a gasp and a wow out of me before I made it over onto the table. Imagine 4 large banquet tables piled high with teal, tons of medical supplies, bandages, etc as far and wide and high as can meet the eye. It was amazing. I am still in awe of that room. And then the lights started to spin, "hey did you guys give me some juice already...good cause then I am not going crazy." Now Cassie under juice is very talkative and thinks she is very funny. So I told my team of guys that I was going to talk a ton (insert laughs because all 5 knew it wouldn't be long until I could talk) and when asked if they could talk about me later I laughed a drugged up, "you better!" and was asleep without remembering much else. 


I woke up and was excited. I DID IT! Only to find out that, "no, Cassie, you didn't get your lungs." I don't remember much, I don't. But I do remember 2 of the times I got my heart crushed...and that was out of the 30 times I woke up excited that I had done it. This is the point in my story that is choppy (you can ask a family member more, they remember it well) but can tell you a few things of what I remember:

I remember seeing what my dad was wearing, I don't remember his face or anything he said, just remember what he was wearing. I also remember I was happy he was there, one of my first notes I wrote before I could talk was to tell Jer I was "glad to see Dad" 

I remember wanting the breathing tube out and being adamant that it should come out. (But didn't know I was as bad as Jeremy tells me I am.) 

I remember trying to rub my eye and Jer wouldn't let me (in fear I was going to pull my own tube out) so I wrote down, "please rub my eye."

I remember Jeremy sitting down to eat something in a pretty bag (which I later found out was pulled pork and puppy chow from the Johnsons!) and I ruined that (with a story I wont mention!)

I remember it finally sinking in that I had my old lungs and asking why I did. And then crying.

I remember all the nurses coming in and saying they were sorry.

I remember the blood pressure cuff going off once in awhile and I remember thinking how I didn't even care.

I remember thinking I was way more with it than I was. And trying to prove it by telling Jeremy what time it was (it didn't work so well.)

I learned a lot from my dry run. Crud happens, and if my phone rang right now I could have the same thing happen. That my surgeon is going to take such good car of me, so much that he wouldn't let anything but perfect go into me. I can go into the operating room smiling. Everyone knows how to handle it now, and lessons on what they would do different if they could (totally including myself!) Don't cry over spilled milk(like your nails not being painted), because in the long run there are bigger battles to worry about. Things I should pack and make sure I have (a needle for my port and conditioner!) I learned that you never really know when things are going to happen, so if there is something you need to finish, DON'T DELAY! I relearned that the Lord knows what you need and what is best, even if its a dry run gone as far as being marked up just to let me know YOU ARE READY! 

I was ready, but like I said before...they just weren't perfect!

Monday, July 15, 2013

They just weren't perfect

So am I mad? Not one bit. Am I frustrated? Not the emotion I guess I would pick. The only emotion I can really name (even though I know there are still 100 of them rolling around) is disappointed. I had lungs, they just weren't perfect.

It was a roller-coaster from the second I saw my phone light up to this very minute...and it will continue until I fully heal. I hope soon. I have an amazing story filled with high points, and very low points. Heck, I had LUNGS, they just weren't perfect.

The first thing I want everyone to know is that NO these lungs weren't "wasted" because they picked ME to receive them. Nobody would have received these lungs the way they were. So please still trust in this wonderful system and the surgeons, they are amazing. My quality of life would have been switching old lung problems for new ones, and come on, if I am doing this they need to be perfect. I probably am not the one to explain this to you because still to this minute all the medicine they gave me is not out of my system. And when I was explained all this I was even foggier. But I have had Jer Jon explain it a few times so that I can get in into my brain the best I can. The cross match was perfect, the xrays were perfect, everything was lining up until the last minute when the lungs were in the surgeons hands and he deemed them TOO HEAVY! This could mean a few things, but over all it just means they weren't good. The lower back lobes had all the weight and therefore they could not manipulate them well enough to fit in my body without problems. That is 2 strikes against these lungs, and thanks to the donor family, but they just weren't perfect.

I have been thinking of the donor family, and the things I know about what was my potential donor. They were high risk lungs (that doesn't mean too much, and no it isn't what made them bad...they obviously won't give you damaged lungs) and they came from a "big guy" HAHA I guess I have very long lungs so a big guys lungs can fit in this little lady!! I found that to be funny, and you all know its laugh or cry with choosing to laugh at this. I wish I could tell them I appreciate the gift, even if I couldn't accept them.

I know for a fact that this was the right thing. Thats why I will never be mad. I would be mad if they would have given me lungs that were perfect. And these weren't perfect. It will take some time to recover. I am pretty beat up emotionally and physically, and just need some time to, well, I guess morn the loss of these lungs. I am sure I will get there. I have to. Just time and patience. 

I will blog about my story, because its quite the story and I feel it needs to be written someplace so I have it, so my family has it, so Laila has it.  But, I am not going to do it right now, like I said I am choosing to laugh, not cry and my emotions are still too odd to go back (not trying to sound dramatic here.) I just wanted you all to know I am here and doing ok.

I had a great support system while I was there. Not just in all the family who were by my side because I had some great support there. Even if we joked about puffins and taco bell all day. But my team of nurses/drs/etc were exactly something I will pray for again. I laid on that operating table and the last thing I remember doing was telling jokes and laughing. I went down happy and confident. I put all my trust in these 5 guys and I was taken care of very well. 

I am swollen, I am bruised, I am still marked up from where they were about to cut, I am emotionally someplace that I can't even tell where it is. But I will make it through this one too. You gotta do what you gotta do when you gotta do it. My time will be here and until I get the right donor I will still be sitting by my phone like I was a week ago. Nothing has changed except I had new lungs...

they just weren't perfect. 

Saturday, July 6, 2013

Oo-de-lally, Oo-de-lally

...Golly, what a day! Ok, really, what a WEEK! Had such a fun week, SUCH a fun week! Just a short little note to let everyone know whats up for now.

It started off with my sister coming into town to hang out and take some sister pictures. I always want a chance to grab my camera and click so it was fun to have Angie who is always willing to do ANYTHING to get a picture for me (even stand on a corner with a halo on her head while people drove by thinking like, "who is that weirdo in a random field with a halo on her head..." HAHA!!!) But it all worked out and I found another cool place to take pictures! Plus she watched Laila for the night because Jer Jon and my 7th anniversary was on Tuesday and we went to dinner and a movie. I picked the restaurant and he picked the deal ever. I picked MONGO and ate my weight in food. 

Then my brother-in-law, Ben, and sis-in-law, Leigh, with their girlie girls came out for a few days to help us celebrate the 4th of July! So much fun. We did everything from, splash park, brewery tour, parade, brewers game, fireworks, to just sitting down to an awesome dinner! It was non-stop and it was cool because moments of rest I just sat on  my o2 so I could be ready to go. Laila loved having her cousins around to play with 24/7 and do everything she wanted to do. Thanks guys for coming out and making us laugh (cry a little too...) and just have some good ol'!

I was hoping to get a call from Madison this weekend since it was a major summer holiday...ti's the season (as awful as that sounds!) I even packed my bag with my phone charger and everything. But I suppose I have another day before the holiday weekend is up. Prayers that I get a set of lungs of any become available! 

Hope you all had a fab 4th...I wish I could start it all over again!!