Mavis

Let me tell you about this little guy.

His name is Mavis.

He is ours! We got a dog! 

This blog is over 2 month old, but as you know, life around here as been a little preoccupied. But after 10 years of hoping and asking and down right begging, Jeremy finally said yes to a dog.

He was owned by a couple in Michigan, and after the wife passed away from cancer the husband was looking for someone to take care of him. I don't personally know this couple, but they did such a great job on this dog. He is amazing...really I say aMAVing and Jeremy just rolls his eyes.

He is 1.5 years old, knows tricks, walks like a champ, and loves his new family. Jeremy is his person, and has been since day one. Which, of course, makes me smile since out of the 3 of us he wants the dog the least. I say this, but will also say he is great with the dog.

When I was in the hospital and still to this day Jeremy walks the dog when I can't, plays with him, lets him out, feeds him...etc. Thanks Jeremy for taking care of the guy when I can't.

Laila loves this dog so much, he sleeps in her bed every night. All we have to say is "go to bed" and he walks to her room, jumps up, and doesn't get up until we wake her up. And even still he doesn't want to get up. 

He loves walks, playing, fetching, tummy rubs, did I say walk yet, his family, anyone who comes in the door, squirrels, and ummm walks. 

We love him too! I am so excited to finally have my Mavis.

Crossing off another one! 85. Own a pet named Mavis

Acute Lung Injury

This has been very tough.

It started Saturday September 10th, and has been a whirlwind since then. I woke up fine, walked the dog fine (yeap, just wait for this blog) and then boom. I was on the couch and not feeling too great, so I decided to go lay down in bed. I made it half way down my hallway when I started to get dizzy and warm and black started filling my eyes. So I hit the wall, slid down and laid there until I felt I could get back up. It didn't take too long. So I slowly got back up, went to the kitchen and then found the next wall to slide down...it happened again. A quick text to Jeremy and he was right over with juice, toast, and a helping hand. I managed to fell well enough to make it to bed for a 2 hour nap. I got up feeling OK but it got better during the day. I ended up making dinner, doing the dishes...normal things.

I woke up around 2 on Sunday with a fever, did my tests around 6 and knew I needed to call the doctors. But still not too bad I stubbornly argued just getting some antibiotics at home. Well, a then-hidden blessing, they told me I needed to come in and just make sure. Seeing as it was Sunday I had to go through the ER, and it was cramped...the Iron Man was the same day in Madison and there were plenty of people who needed attention. 

They did all the normal tests, X-ray, Blood work, check heart rate, blood pressure, oxygen level. They poked and prodded three times to get an IV (I guessed it would be three pokes before and I was right...its like I have done stuff like this before!) As soon as they checked my oxygen and it as 91% I landed myself a nasal cannula of the good stuff. It helped, a lot. I had yet to see my X-ray but the 2 doctors I saw told me it looked like I had a bad case of pneumonia. Ok,I thought...lets get IV meds started...I need to feel better before the week is up, I have a talk and gala to go to!

From there Jeremy and I were escorted to a room where I would be staying for a few days. Monday morning they would be a bronc to see what type of pneumonia they were dealing with. No biggie, really in the grand scheme of things...they can fix this. 

And then that fear was thrown in face, and out my mouth. I coughed up bubbly blood. "Do you guys see blood with pneumonia?!" The answer wasn't really what I had wanted. I start to get a little nervous. They hav me do PFTs and my beautiful 120% was now down to 74%. WHERE IS ALL MY GLITTER!? They took me down for my bronc and I saw my X-Ray, wow. It actually had me hold my breath and my heart started to pound, my glitter was stuck down low, covered in a cloudy white mess. This couldn't be my X-Ray, could it? And then I started to  for get sleepy from the meds. I woke up thinking the worse was over.

But it wasn't.

I started to not be able to do the little things anymore. They started bump up y oxygen more and more. What is going on? I can't breathe. They bump my oxygen. They say I have to wear a face mask, ok, now I have to do high flow oxygen because regular flow isn't enough. I can't eat without my oxygen dipping down into the 80's. I can't walk myself to the bathroom and then back without the same results. And then I lay down to catch my breath, but there is nothing there. Not enough air and I get scared. I keep telling them I need more help, my oxygen isn't going above 80% now. I need to be put on Bi-Pap. They need to force the air in my lungs. They need to take me to ICU. They are in talks about putting me under, putting me on a vent and letting my lungs heal. No.

Dear Lord, of please wrap me in your arms. I mange to tell everyone that will listen that they can't let me die. I don't know how to say goodbye to everyone. I only gave Laila a quick hug and kiss...I can't die, I can't leave her. Jeremy was by my side, but how can I leave him too. My parents were on their way from MI, they can't watch their daughter die. I haven't seen my sister in awhile, I can't leave her. So much is up in the air, so much isn't finished. Please, Lord, don't let me die. 

My bi-pap would beep when I would stop breathing for awhile, the nurses would come in and remind me to breathe. I had to be reminded to use my lungs. I could no longer walk. I could no longer eat. What is going on?! 

Every test they performed came up negative. It showed nothing. Nothing for virus, nothing for bacteria, nothing for fungus, nothing for rejection. They can't find out what is wrong with me. How do you fight something that doesn't have a name? With everything. I was on 3 antibiotics which didn't help. So I was placed on steroids. I was put on 3 days of 500 mg/day dose and then tapper for the next 6 weeks. Praying that this would work, and now praising the Lord that it did. 2 days of being in ICU and I was able to move from bi-pap to high flow oxygen. I could stand up and take 2 steps to use the bathroom. I could eat pureed soup and drink milk. I could now talk to my family and friends when they came in my room. I was slowly healing. I wasn't begging everyone to make sure I didn't die.

I was done with two ivs that blew and a midline was placed in, only to have to not return blood when the nurse tried to hard to draw from it. why the haste you ask? Well, that nurse poked herself with my needle and needed blood from me to make sure I had no other disease she could catch. She wasn't happy and took it out on me. I was moved out of ICU at 3 am that night. Through scared, drugged, hazed eyes I shed some tears. I just needed to sleep, so I could heal. But was happy to be back in the land of all my good nurses who took care of me way too well. 

The gala came and went, and my family all said they had a great time. They sent me pictures all night so it was like I was there. Jeremy and Laila took over and gave one of the best speeches I have ever heard. Yes, my 7 year old got up in front of hundreds of people and read the speech she wrote. Check it out on Facebook if you can. They did an amazing job.

The next few days were filled with tests upon tests, pokes upon upon pokes trying to figure out what was wrong. Maybe I was aspirating all my food, so I did a swallow study...and gagged through the whole things. I don't aspirate my food, that would be such a waste anyways right. Still nothing was culturing a positive. Ct scan, xrays, tests and tests and tests. But I was still getting stronger little by little, and was able to now get up and at least sit up, move to my chair, maybe even walk to the bathroom once in awhile (10 feet away)...but to me all those were victories. A few days later I put my big girl pants on and told them I was going to walk the hallway (with the only RT I really trusted...she even washed my hair, changed my shirt, and got socks for me. I was more than a patient, I was a person she cared about!) and I did. And everytime I walked farther, and a little faster. My oxygen staying at about 92% while on 70% high flow rate. But I didn't care, I was walking. And to keep my energy up I was starting to eat more (which was exhausting...like running a marathon type breathing and sweating) and for extra intake I was drinking a protein shake on top. I was determined, I was getting some fight back,

My anxiety was high, and not much would really calm me down. Poor Sunday doctors got the brunt of it when they wanted to do more tests, poke more. My potassium was high, my EKG had changed. I was done and they all knew it. So much knew it that my nurses came in just to talk. Nate just sat next to me and listened to me cry and talk. Sue came in and brought ice water. Joey came in and just talked football with me. These are good nurses. These are the ones that deserve more. I told the doctors they couldn't come in anymore. That was I was ready to go home and that everything they said was didn't make sense...I asked over and over if the extra protein shake I was drinking had anything to do with my levels being off. Instead they treated me a few times and then put me on a renal diet...with boast which I refused to drink. They didn't listen until the 4 time...I was right. Sometimes you have to be very fully aware with whats going on, and its hard. 

The good news is in that small amount of time, I had gone from highflow, to face mask to now a cannula with 2 ml of oxygen flowing through. Thank you Lord! My lungs were still healing.

I didn't sleep that night, again. I made a list for 8 am when I would see my team and argue the fact that I needed to go in. 2 weeks was too long. Jeremy came as soon as he could because he knew my anxiety sent me through the roof. I told him and Laila not to come Sunday because I didn't want Laila to see me like that. I wasn't confident, I was scared and not handling anything well. My team, who had been warned, walked in and asked how I was. Followed by a you can come home...I didn't have to argue my points. But I told them I had some really good ones HA!

So we packed up, waited for paper work, waited to make sure I had enough oxygen to get us home, that a at home system would follow shortly so I wouldn't have to worry about tanks. I had to get my midline pulled, get dressed and we were out. 

I cried most of the way home, just thankful that the Lords will was that I was living and going home. Laila and I were reunited again and there was tears on both ends. we didn't leave eachothers side all night, she even slept on the other couch so she wouldn't be far away from me. I had her hand and I wasn't letting go.

Jeremy's parents came a few days later to help cook and run errands, take care of Laila. It was nice to be able to still not worry about using energy. Just relearning how to breathe again. I couldn't cook or do much so we needed a little mending. 2 days after they left my Mom came to help us too, she worked her buns off PLUS made some of the best chicken! I just dropped her off today and wasn't ready to say goodbye. I didn't realize I could hate those words so much. Thanks for the help guys!

Yesterday I had a follow up appointment and all my labs looked really well! My PFTs were still at 74%, but we will never know how bad they had been in the ICU so my doctor said he was good with that, to keep doing what I was doing and see if this is my new base or if things still improve. I walked my 6 minute walk WITHOUT oxygen and now am able to do things without it. I wasn't allowed to leave the house for more than an hour at a time...now I can start doing things again. I drove today for the first time in a month. I walked the dog I wore makeup. I looked like a girl again...a human again. I have lost about 15 pounds, and am trying to work on gaining that back. Its hard because right now I am diabetic due to the medicine, so I'm trying to figure this out right now.

Praising the Lord for everything he has done for me and my family once again. This was a lesson for me in letting it be His will, not mine. A hard lesson when faced with, but once I was reminded over and over and over again to give it to Him, my brain and lungs and heart would relax. Thank goodness He is in control.

It is still a long road and I have to rest just as much as I have to be active. Tomorrow I plan on vegging out on the couch and watching marathons of Project Runway. My work literally has to be breathing...I have to remember and expand! I am still on higher dose of prednisone which means I am a crazy person, so if you see me and I kind of shy away...please don't take offense its just for everyones own good HAHA!! Thanks to everyone who have helped us this past month, we all appreciate it more than any words can say.

Enjoy this week and don't let things bother you when they are little, because those little things are just that...LITTLE. That cold will pass, the boss yelling at you will be fine, the bad grade is just a bad grade, to start a fight over something so little isn't worth it. You never know when the last moment could really be that last moment, I can tell you that I will never just give Laila a quick hug and peck goodbye anymore...even if it means we are a few minutes late!

The Sky!?

Yikes, it has been months. I actually missed writing a ton, so I am back and ready to catch everyone up.

We have been pretty busy this summer, and its been pretty fun. Plus we have so much more in the next few months to come.

Our Family Feud episode aired. Did you all see it? If not try and find it, it was such a fun time. And I still think the Sky can be black and white! Ask me about it, I can have you convinced!

We went to Kansas City for a Tigers game and to visit some life long friends. The trip was filled with crummy gas stations, flat lands, and Iowa. But well worth it, always great to go back down nostalgia lane with the Freys (we have known Dan separately since about 2nd grade! Here is where I could slip in some funny stories or inside jokes, I have more than 42...but I will spare you all!) While we were down there Laila knocked one tooth out and the other one almost out. It was pushed out by Daddy 2 later. The dentist said everything looked ok, and she has an appointment in a few weeks so I will be interested to see if he still think it looks ok. The girl split her gum from the tooth to the top, and it still has a split. Praying that everything will still heal well.

We celebrated our 10 year anniversary July 2nd. Wow, 10 whole years. Making it 18 years total we have been together, passing the mark that we have been together longer than we haven't in our short lives. We were just babies, a sophomore and junior in high school. Again, babies! It blows my mind. We have grown up together. Had a great time, and waiting for the bigger celebration later this year. Hopefully!

Jeremy's oldest brother Ben, his wife Leigh and our 3 nieces and 1 very cute nephew came over the 4th to celebrate with us, and again it was a fun filled, non stop, on the go weekend. And once again I wouldn't change a thing. This past weekend Jeremy's youngest brother, Nick, and his wife Theresa came and again, we had so much fun. We ate, ate, and ate...its what we do. We haven't seen them all since Christmas so you can imagine the catch up, laughs, talks, and fun we had.

My health:

Its been good. My lungs are still great, but a little sluggish with the missed sleep and all. But nothing some extra TLC won't fix. I good mixture of exercise, sleep, and good eating. But, no, its nothing to worry about. My numbers still rock!! I have often thought this year of all the things I probably wouldn't have been here for. I wonder how much would have been different, how some people would be different. Its hard to think about, but once in awhile my mind goes there, and the emotions catch the best of me. Then I get a hug and eat a caramello and everything goes back to the back of my mind again.

I finally found out that YES, I do have a slight hearing problem. But YAY for me not being crazy and imagining the problem. I have a toning issue, making it hard for my tears to not jumble sounds basically. So, I need to do some exercises to help train my ear. Its hard, and I find myself getting frustrated with it. So if you are talking to me and there are others noises around and I ignore you, its most likely that I can't hear what you are saying or that you are saying it to me. It was caused from some antibiotics that I was on for some years, but in the long run I do understand that the issue I have now is better than what could have been without that medicine, without that bandaid that helped me last as long as I have.

I hope you are all having a great summer, enjoying the sunshine, warm weather and the outside. We sure are trying around here! Soaking it all up before the weathers changes for the fall in a few months! 

A 2 for...

My surgery. Ugh. Groan. My surgery.

I will blow off some steam and then let it go.

I was blessed enough that my mom came to help. She helped a ton, and thanked the Lord for her many times. The weight of Laila having a normal(ish) life was lifted as much as guilt allows it to. Also thanks to Jeremy who handled me well. And my other 2 visitors while I was in....great catching up with both of you!!

I knew going into this that I was spending a few night hooked up to an IV until the cultures showed what meds I needed. And even though I wasn't thrilled about that, I wasn't upset that they were taking care of my lungs. 

I packed my bags, full of comfy clothes and things to do during the long days. Every Team Cassie shirt, cute new socks, my fav pants, the game SET, coloring books, magazines....etc etc, and Jeremy and I headed off to Madison on Sunday night. I had to be at the hospital before 5:30 am. 

We go to Madison and I did what I normally do before surgery. I eat as much as I can, drink some, take a bath, shave, wash my hair a good last time, pray all night, and just try and relax. I was ready for the next morning. Tired, but ready. 

I was ready for the headaches to be gone, the pressure in my sinuses, the infection gone, and just get to the next level of the process. I was so excited about the thought. After three pokes, they finally got a sort of good IV in and without warning gave me the relax juice. I just remember telling the anesthesiologist he was a trickster, going into the OR (and thinking it was so tiny compared to the transplant one....well duh) and moving unto the table. Then waking up in pain, Jeremy wasn't there, and I wasn't sitting up much. 

I was shortly moved to my room, given pain meds, and finally Jeremy was aloud to come in. Ahhh I was starting to feel ok, wake up more, talk to people and eat. Such is surgery, its over and on the mend.

But that would just be too easy, right? I ended up being semi allergic to one of the antibiotics they put me on. My arm burned, turned red, and blew up in little itchies. So I was like, yeah, just stop that one then and lets move on. So they did, but of course they still needed to pull my IV out. And put another in. But this time it was a midline in my upper arm with the IV team. So another poke, more tape, and a sore arm later...I was doing more meds. And it was over, and I could heal.

I would call home often, and Laila would call me when I didn't call her. The call was full of tears, almost each time. A little girl just wanting her mommy to be back home, and her mommy wanting to be back home just as much.

I was excited that Thursday looked like the day that I would be going home. I was feeling good, my packing was coming out, I could go for a real walk, and I just ordered my pancakes...I was a happy girl. So lets go! The packing first.

ENT came around 9 to do it in my room, even better. I knew from previous times that the packing hurts for about 5 seconds and then a rush or relief. But this rush of relief was a huge rush....a rush of bright red blood. Non stop. So they spray it to help stop. Didn't help. Pinch and head on knees for 30 minutes. Didn't stop. I was spitting and wiping blood out of my mouth. I went through over a book of gauze. So they had to put the packing back in. Didn't stop it. The blood was all over my shirt, down my neck and cheeks, my mouth was crusted with dark red dried blood. All day I sat with blood spilling over my packing. I knew what this meant, I was warned.

Another surgery. They had to stop the bleeding. So as my pulm dr was ready to send me home or oral antibiotics. I was stuck with a midline and getting ready for another surgery. But I was suppose to go home!

So with kleenex in my bed, I was wheeled down for pre-op. Put under in hopes that cauterizing the vessel would work. Just praying so hard.

I woke up, and there was no blood on me, there was no bandage under my nose trying to stop it. It worked. Phew. I could hopefully go home on Friday if all went well over night. And praise the Lord, it did.

I walked away with a swollen nose, and with a fat and numb lip, burns from the tape on my face, 4 bruises from IVs...but I got to walk away. I got to walk away with no blood, with no Iv, and holding my daughters hand. Again, praise the Lord.

I had a pre-op appointment this past Monday, a little nervous for what all was going to be done. Ha...nothing like walking in and the announce "Our problem child here." 

Pppshhh....

All I could think was maybe I was THIS doctors problem child...but I am tranplants golden one. 

They didn't do anything to my nose that day, they treated it like a brand new baby...a brand new baby that they didn't want to bleed all over the place. So they told me to rinse 8 cups of salt/steroid meds through my nose a day to help it heal. But did also say everything looked good considering what they all had done, And the best news...all the infection was cleared out and it had only cultured staph. No ultra nasty bug. 

So I am sitting at home, healing, fixing meds to make sure all levels are normal, eating as healthy and my prednisone will let me HaHa!

And so it goes, I can let it go!

Here we go

This past month has been pretty busy. 

On February 15th Laila had her tonsils out. She did really well, didn't cry too much, expect when I first got to go into recovery with her. This was one of those moments I thanked the Lord for a healthy child. It was so hard to watch her do that.

She ended up having to spend the night because she threw up blood, but in reality we are pretty sure it was her red medicine she took 10 minutes before that. Come to find out, her body reacts much like her Moms. Whenever something happens that it doesn't like, it turns into a high fever...but only for the first part of the day. So for a few days we sat and cuddled and took pain meds (well one of us did) and slept. And slept. But she is all healed and doing now praying bugs stay away from that child.

I have also been very busy with doctors. I had a skin check for abnormalities, and they found nothing. So all the years of sunblock, umbrellas, hats and every other form of shade has worked in my favor. She said I have done everything right, and to keep it up. So my skinny white legs will stay so porcelain this summer, again. And knowing the numbers I have vs. the numbers others have that don't follow some rules....I will take my legs.

My sinuses have also been a beast lately. Like I can't get them to act straight. So after a few years of trying to struggle with sinuses that pretty much are  my least favorite thing...its time to go in and fix them. 

I have tried to rinse often, but my ear started to hurt so my doctor told me I was doing it too much. I had a CT scan and my sinuses are full of infection, more than what they can probably see. I am in pain often, my face ends up swelling and being tender, and I get headaches. Ok, so, I am hoping that this will help all of those. 

They are going to get all the infections out, mostly in the sinuses in your cheek. and then scrape some bone away to open it enough that gravity will help it flow down where it all should be. 

Sigh, another surgery. More proof that I just don't think I can do anything normal. But I am alive, I am breathing, and I am ok. So in the next few days I will have a date set for that.

Work is going very well. The kids are starting to get to know me, and the girls I work with a nice too. They have been awesome about the time I have needed for Laila, and my health so far. Very blessed.

Jeremy has been super busy, especially this week with Holy Week and the church getting the finishing touches on the remodel. He has been busy dealing with sick girls, and I am sure excited to get us all fixed again!

The next few weeks are packed full of fun things, I am looking forward to it! I will try and get on the computer next week to write more! Now I need to go make more lists, and try not to fall asleep too early!!

PFTs, Duckmasks, and Donors

I had a doctors appointment yesterday, on a cold winters day. It wasn't really a "planned"visit, at least not a planned for more than 4 days type. With all the germs flying around and this nasty whatever I have in my sinuses that hasn't gone away with 4 weeks of antibiotics, my doc wanted to check me out.

I admit I was a tad nervous. I had to fess up that I was around more than your average germs, I had to fess up to having a job, and had to fess up to being sick. But once again, the Lord has me in his protective arms. My xrays must have been clear of crud or infection because nothing was ever said about them, I walked 1920 steps in 6 minutes and my oxygen stayed pretty normal around 97% (although I liked seeing that 100% I had for over 1.5 years....I'm wondering if my body is just so use to O2 now that its getting lazy with it. Expand those lungs and get back to that 100%! But here is the kicker. The levels in my lungs went up even more. Yes, thats right, they are even higher. They are now at 119%. Can we all just pause and look at the number for a moment.

...119%...

I mean we are talking about the little CFer right? The 1% less than 120. Thats like more than 500x better than I was pre transplant. I was in tears yesterday after I saw this. Happy happy tears. I am living pretty close to how an average normal person lives. My mind can't comprehend this. 

The next 2 weeks I will be going into Madison 2 more times for 2 more appointments. And praying those turn out much like yesterdays. This crazy doubly-blessed life of mine.

On a sad side note. One of my nurses is retiring and yesterday was the last time I will see her...at least in that setting. She was a blessing. The first face you saw going into clinic, and even when you were sick she would smile and get a smile out of you. She made me feel so loved, always did. She told me how happy she was that I was there, living. That she remembers everything about my journey since I started at UW. I will miss her so very much.

The little bit of me inside (Ok I say little but really its HUGE...more than I will ever lead on) is still wanting to know anything and everything about my donor and family. Its hard for me to know that their lungs are inside of me, keeping me alive, and so unbelievably emotionally undesirable to me; and I don't know anything about the person they were born into. Like these lungs, think about it, had a good home for who knows how long and now they are mine. The ones I was born with are in a garbage (and some pieces used in research!) and the ones I breathe with now don't belong to me. 

And thats how I treat them, they aren't mine. They were a priceless gift, given to me blindly and I need to take care of them better than I take care of any other things on or in my body. OK, but to get back to what I was going to say...

I asked if anyone knew anything about my donor...basically age and sex but nobody knew. But....BUT...I found out so much about my potential first donor. My dry run donor from back on the July day. Like I know their story. I know it. Crazy emotions right now. Even though those lungs couldn't survive in me, I now know who that person was. I know about them. 

I know the name. The age. The sex. What they look like.

I know.

I KNOW.

Right now I feel like I can't say much on my blog for probably dumb reasons, but at the moment don't feel comfortable. This helps some sort of mental state of limbo a tad. One of the donors I know, even if its not the person who lives inside of me, its the person who still signed their donor card and therefore was giving me a chance at life. I still am so thankful for that. And of course thankful for the surgeon who know that those lungs were too damaged from the cause of death. I can't even tell you the feelings, in full, of how and what I am feeling. I don't even know if any of the things I just wrote really make sense.

But hug your loved ones right now. Laugh just because you are here to do so. Eat that extra piece of cake (I know I ate about half of it!) And sign your donor cards!!

Shortribs, Wine, and the CFF

Lastnight I got to do one of my favorite things, help raise money for the Cystic Fibrosis Foundation. And the food and drinks were out of this world!

It was the Milwaukee Wineopener and I was asked to be the speaker. There really isn't too many things that humble me more. I open up about my story of CF patient turned transplant survivor. To this day all the emotions run high when I talk about it, and at events were everyone there is her to support people like you...wow, tears and smiles both flow pretty steadily. 

The feelings of pre-transplant come flooding back. The getting ready to die feeling that my brain pushes back are now brought up to the foreground and I need to take to minute to remember that, yes, I am breathing. Yes, that is cool air coming in and out of my lungs. Yes, dying has been put on hold. Deep breathing, expand those beauties and show everyone what donations can do. 

I said it lastnight, and I will say it again and again. Without people like those who were there lastnight, and people like you who have supported, donated, and helped out...I wouldn't be here as long as I have. I wouldn't have been a sister, daughter, wive, and mom as long as I have. Isn't that crazy!? Thank you all and give yourself a hug from me (and my family.)

Bid for a cure set a new record for the event, and that money and donations from other events help make a cure something that could happen. The cure for CF may be too late for this girl, but if it means that there are little girls and boys out there right not don't have to worry about what CF will rob them off, of hurting them, then I will forever speak (or volunteer) and the Foundation. I will forever do my part and make CF stand for Cure Found. 

I meet incredible people with some incredible stories at events. I get to catch up with so many I have met in the past. I hear from parents how well their own children are doing. All from putting skis out and going in the snow, to moving on to the next big chapter in ones lives....and the best part if these things are huge for CFers, for their families. I talk to parents about how they feel about their child, about the accomplishments. I really have no words for the feelings I get when I have conversations with them. No words. I not only understand a little more the thoughts  and feelings of my parents when I was young, but can understand the scared hope in their eyes. 

Keep on fighting CF warrior and caregivers, keep on fighting!!!

I did another Random 25

25 things you may not know about me. Its been awhile and sometimes stuff like this is just interesting. 

1. I eat a bowl of cereal every night before I go to sleep.

2. I sing and dance like a crazy person whenever I get the chance.

3. ...even as I type this I am singing in my head.

4. If we are driving anywhere for more than 30 minutes I am fast asleep.

5. I was on homecoming court my Junior year of highschool.

6. Jeremy and I worked in the same place at the same time, but when he went back to school I stole his job so I could get a raise. And honestly, I was better at it than him.

7. When I was drugged up after transplant, I was mad at my computer so I popped the "S" and "W" off the keyboard. I realize that didn't fix my problem.

8. I named my cell phone after the PA who pulled most chest tubes out.

9. I am painfully shy.

10. I wear a necklace with my transplant date on it.

11. I had a few miscarriages before we had Laila. And named each child.

12. I use to play the piano, and when i say "play" I mean I can do alto/soprano line once in awhile. But have a thing for the cello...swoon.

13. One of my favorite things to do with Laila is sit on the couch and read to her.

14. I look forward to going to bed every night.

15. I love to cook. And eat. And cook to eat.

16. I spell for crud (I am sure you have gathered that!)

17. School supplies items are a weakness of mine, especially pens, pencils, and notebooks. I am sure its so I can make all those lists.

18. I have always wanted to smell like peppermint. My soap is peppermint. My lip gloss. I want more peppermint.

19. "Son of a Preacher Man" was always ad-libbed as "DAUGHTER of a Preacher Man" while sung by the Zell girls.

20. I hate unloading the dishwasher. Like loathe it. Its the worst household chore.

21. I can speak the Lords Prayer in German, but thats about if after 1 1/2 years of German (don't ask about that other half I didn't do!!)

22. I have broken my medical ID 2 times...and its currently broken and I need to fix it so I can wear it.

23. I was friends with Jeremys best friend before he was. Well, I knew him..."friends" is a loose term. (FREY!)

24. My eyes are all sorts of messed up. One is Atonic and the other is Neutonic. Because I can't have anything quite normal HA! (Although I just tired to google the second and found nothing...I'm super intrigued now!)

25. Jeremy bought our wedding rings from a pirate...at a bar...in WI. (And I pass this place whenever I go to work)

The Rundown

Can we avoid the fact that I haven't written in 3 months? NO?...well, just consider it all as "no news is good news." I do have the guilt of not keeping up on it, not for the sake of thinking everyone is so interested in my life. But the fact that this is all suppose to be for something Laila can go back on in years to come and read about the journey we went through. (HI, LAILA!)

Ok lets go back to in a nutshell: 



We all dressed up to spoil Laila (surprise, surprise!) for Halloween. But to be honest I think we all had more fun than she did! I mean, I got to dress as the MAD HATTER!! 

I celebrated two years since my transplant! Two whole years and things are going so well. So well! I feel so blessed with my story, a Cinderella story...true fairy-tale. 

This year I wanted to celebrate as a family, the 3 of us. And because I love watching, more than most things, my child smile ad get excited we went and watched the Peanuts movie in 3D (and super fun because we had the entire theater to ourselves so we could just talk and giggle the whole time! Followed by an awesome dinner to a nice restaurant. We got all dressed up, Laila in high heels and everything. We talked to our girl out how this is the place that you use every manner you know and oh my goodness was she cute! And I think Jeremy smiled pretty much all day, and I cried all my emotions all day. I wonder if those two things will ever change. 

SIDE NOTE: I once again had Jeremy write something to post about that day. I have it still and I will post it in a separate blog in a few days!

Jeremy's oldest brother and his wife had a son (oh my word people this boy is so sweet!) and we were blessed to be his Godparents. And Jeremy preformed the baptism, such a wonderful thing! I love that our families are continuing to grow!



We went back for Thanksgiving and Christmas this years as well. Both holidays were filled with family, food, and the Lord. We were beyond spoiled again this year. Some of my favorite gifts were: my makeup (girl can never have too much), my 2 necklaces, my purse, trash can (long story here folks, but go with my excitement here!!) Jeremy's Avett brother CD.



I also celebrated another year I beat CF, and rocking new lungs while I did it. I was till home in Michigan and this birthday was so much fun! Started out with church and family brunch, then ice skating, and dinner out. I don't think my family have laughed as hard as we did that afternoon and evening. Even dinner was well done (get it Mom, Dad, Jer and Ang...GET IT!!) I got a new coat and comfy scarf, star wars shirt, planner for lists...just to name a few. I also got a carrot cake because its my dads favorite and the next day pork roast. Ever since we were little we got to pick a birthday meal that mom and dad would cook us...might be one of my fav traditions!

The beginning of January I started a job. I am very excited because this means I am feeling healthy enough to do so, and I can help my family out for awhile. I do miss being a stay at home wife and mother, but seeing as Laila is at school I get the chance to work while she is there. I have been enjoying the days that I have been able to go! With that said, germs have hit our house. Sunday and Monday the stomach bug grabbed a hold of the littlest one. And as of Tuesday I have strep and who knows what else, I have been on meds and can't seem to quite shake whatever this is. But hoping to go back to work next week.

That brings us up to speed, up to right now where I am sitting at my computer drinking my morning cream and sugar with coffee, out of my Choose Happy coffee mug wondering if its too late to eat the Chinese food in the fridge or if I should go for the normal cereal. Prepping myself to get in the shower and maybe do something before the day starts. Laila is at a sleepover. Jeremy is of course all ready getting his day started. 

I hope you all had a great few months. That you are keeping warm in this weather. Staying away from the nasty bugs going around. And have a good Saturday, no matter how you spend it. 

Numbers

I had a doctors appointment last week and I am still blown away with this whole breathing thing.

Every single number on all my tests went up. Although my oxygen "was only" at 98% on my walk, not the 100% I love to see. But Dr. Sonetti wasn't worried, especially because I walked an extra 100 steps from last time. I gained 2 pounds, my lung function went up 1% (for a total of 117%) and my chest Xray was clear. I learned I didn't need a bronc anytime soon, don't have to go to clinic for another 6 months, and am still a star transplant recipient. Such beautiful glitter.

I did have to gain two more doctors to the already long existing list. One is a skin doctor, just to check over everything since skin cancer is more prominent in transplanted people, and the longer I am out the more likely it can be. So, yes, I am a pale person all year round and when I do sit in the sun, I SPF up...and often. Its OK, pale is beautiful. A porcelain princess. 

The other doctor, unfortunately, isn't for preventative reasons. My hearing has been pretty bad lately. I have to ask what about a million times, and ask the same question over again because I don't hear that a person responds. I can imagine thats pretty annoying, if you want that answer for sure...just ask Jeremy. There is always a low tone in my ears and a full feeling. I am hoping it can all be fixed. Plus its odd because I am not on any meds that should give alarm for this. But hopefully in a few months that will all be answered. So, in the mean time, just talk loudly around me HA HA!

On Sunday, September 27, Jeremy got a divine call to in Sun Prairie, WI. This is also where Jeremy served as Vicar. So many emotions have gone into the last few weeks. Please pray for Jeremy as he deliberates where best he can serve his Lord.

I am coming up on my second lungiversary and trying to figure out how to exactly celebrate. I feel it will be pretty low key this year, which is fine. Maybe we will finally go out to eat, like we were going to that night we got that call or eat the steak that we left thawing in the fridge. Its always fun to just be able to be normal, and do all those things healthy people do...so maybe I will celebrate by drinking coffee and running errands. Oh the normal life!!

Not sure of a good title...

Its September and it seems like time is flying. 

Laila started school as a first grader, and I wish I could time freeze everything. She is just a funny, artistic, energetic, dramatic, stubborn, beautiful, too smart for her own good, little girl. She gives me reasons to laugh ALL the time. Her sense of humor in not missing. Her patience maybe, but not her sense of humor. She is in piano and ballet this year, and loving both. It goes with her artistic and dramatic side. She loves dresses, glitter, hair pretties, riding her bike (which she just learned to do before school started), horses, crayons, singing, cooking, Yahtzee, baseball, and just being a free spirit.

Jeremy is working hard, whether it be at his office and church, or his temporary office on our new patio. He also started the fall routine, of teaching classes, and classes, and meetings, with a side of meetings. He has been enjoying listening to the Tigers, having people over on the weekend, sweating this summer since it will be chilly out soon, getting caught up on Dr. Who (which he and Laila both really like, I just think it looks like Power Rangers for adults. Those 2 are just crazy) and peace and quiet while Laila is at school! Right now he is working on the service for Christ the King...and singing hymns while he does it (and getting a tad upset because his computer just closed his program!)

I have been feeling very good lately! My lungs feel great, and all tests I do at home are high...good lung function. My energy comes and goes, as well as my shakes, but I have been pretty good about just listening to what my body tells me. Hence the 8 hours of bing watching Greys Anatomy on the couch yesterday. But other days, I don't stop until I hit the pillow. I actually have really been enjoying this normal life. I have been meal planning, cleaning (TONS), sitting on the new patio reading, cooking, enjoying the company we have, and always trying to plan the next month out. 

I am still learning that my body is different. YAY, I can breathe! But, man, it was a long road to get here. I am often reminded of that road when I see my scars, hear the stories, or when my hand rubs against the wire in my chest.  YAY, I can breathe! But man, again, that road was hard. I was close to death. And even though, like I have said before, I didn't see it at the time, but yes...I was in fact dying. 

I just said to Jeremy the other day, its weird to think if I would not have been blessed with those lungs at that time, I wouldn't be here right now. And I know what you are thinking..."you don't know that, Cassie!"...but let me tell you I do know that. I understand that everything is/was in God's hands, so if he wanted me to live on 18% lung function for years, that I could have. But I remember that feeling of not breathing. I remember the feeling of dying. 

The transplant, the dry run, the almost dying. They have all changed every part of who I am. And I am not just talking about physically changing which lungs I had. I am talking about mentally too. I can say that all of it is behind me, I can. I can say I think more about living now, than dying. And I am. I can say that all that doesn't matter now, and I guess it doesn't. But it all shaped me into the Cassie I am today. The one sitting here writing this blog. 

She is so different than who I was. And I think that's ok, right? Sometimes I wonder. I wonder who I was, and if I ever liked that person. Or if I like this person. They are honestly so different. he strange thing is, I am not sure when it all changed, it was so gradually fast, that I blinked and missed it. 

But I will save all that for another time, another blog. 

Last bit of summer vacation

Its August and that weird empty feeling hits yet again. Summer ends, school begins. I just don't like August and really never have.

Laila starts school in a week and again this mother is not ready. I'm enjoying the late nights, lazy mornings, and just the freedom that summer always brings. This week, the last week, is full of all the last minute things. Home visit from Lailas teacher, ballet try-outs, Lailas doctor appointment, last bit of school supplies, trying to finish as much as our summer list as possible. Oh, I want to start all over again.

We just got back from our almost 2 week vacation, and like everybody else our vacation was anything but relaxing. Cramming everything we could in, and still not getting everything in due to lack of time. 

We hit up a Tigers games at Comerica (Lailas first home game), birthdayparty for our niece, meeting the newest member of the family (gah Benji...so cute! Just look at the pic), deck party, and FAMILY FEUD.



The Zell Family flew down to Atlanta and taped the show! Oh my word! Steve Harvey had me rolling, I had tear in my eyes. The whole experience was crazy and awesome and exhausting..so many emotions in so little days. We will air sometime in May or June...so stay tuned! 



My health has been so amazing, I have no complaints. My lungs are working better than ever and I say a thankful prayer at least 2 times a day. I am so blessed to have this blinged out gift. I really hope one day I can thank my donor as best as I can. I hope that one day I will hear from them. This part is hard. I always imagined I would hear from them, that I would meet my family. Get to hear stories of my donor. Still praying that they find comfort, and that one day they will want to hear from me and know how grateful I really am...words honestly will never be enough, never give justice to how grateful we all are!

The rest of my family is doing great too. Mom and I are both trying to tweak a few things in order to feel the best possible, but we will get there. My dad is enjoying having a semi healthy family. My sister is having a ball with her new condo and growing her own veggies...her cucumbers are tasty! Jeremy is starting to get ready for the school year and planning the next few months, he loved Atlanta and has some funny stories! Laila is, well, Laila. She is growing like a weed and has some pretty good lines...not sure where she comes from (ok, I know, I know, she acts just like me!)

I hope you are all doing as well as I am. Keeping my chin up, nails polished, and house semi-clean. I finally after months got my medical id bracelet fixed...big news for me. Also excited that I have been grabbing my camera and clicking away, and still have some more "appointments" to come...

Enjoy the last bit of summer!

Summer, Summer Time

Happy Summer everyone.

Has it really been 2 months since I blogged?

Anyway, I hope you all are having a good summer, full of nice weather, fun times, and lots of relaxing. Ours has been so crazy.

We made a list of thirty things to do before summer, and we are more than half way through. Hoping to do a few more this week. Summer is flying by so I am trying to make sure everything gets done, without a rushed "must do" feeling. Tomorrow: a simple picnic.

We have had a lot of people visit this summer. Its such a fun thing. And I am excited to say my mom and DAD are coming over later this month. I am excited to have them here and just be with them.

Laila and I have made it back to Michigan for 2 baby showers and some fun. Crossed off KAYAK from out r summer list while we were there. And we are headed back in the begging of next month. BECAUSE...

We are headed to Atlanta for Family Feud! Hoping the Zell family makes it on, and then keeps making it on! We have been practicing our "Good Answers" a ton, so much so that Laila even says it to just about everyone. The whole experience seems like a dream, its crazy and everyday we seem to get more information on the next step. Once in a lifetime thing right here, and very excited to help Mom cross something off her cancer list.

The last few months have been a little tough for me. My lungs are doing awesome! But my body just hates everything I do. My lungs love my medicine, the rest of my body could leave it. I feel like I am abusing every other organ I have. I am tired all the time, my self image has been low and keeps getting lower...I hate what I see in the mirror (and NO I dont want you all to say Im pretty, so please don't.) I cant get motivated to do too much around the house, so putting shoes on during the day helps me get moving, until I crash on the bed. My body seems to not want to do anything, including my body. I am anemic now, so I had to add iron to my pill box. I had a little scare so they biopsied my uterus...thank God it all came back normal.

 I found out I do have Polycystic Ovarian Syndrome. This hit me hard. Just another thing that I can't control. I am not aloud to take hormones with the rest of my medicine, so to get any relief or "cure" would be to have more organs taken out. I can't even think about this.

I keep telling myself this is all mind over matter. Just as I did when I was recovering from transplant. Set my mind to it and I can make it all better. Its scary. 

But with it all said, I am still trying to make sure we have a good summer. I don't want school to start without that list complete!! So here is to the rest of summer with a smile on!

Battle Wounds

This one was is pure selfishness. It was for me to try to be OK with myself and everything imperfectly perfect about my body. I crossed this one off with a little bit of excitement and a whole lot of nervousness. 

My scars. I had pictures of all my scars taken.

First, thank you to Twig and Olive for being as wonderful as ever and once again capturing a moment in our families lives. Courtney made me feel so beautiful. I am telling you, if you live in WI you should check them out, some of the most beautiful photography I am ever seen.

There isn't a part of my body that doesn't have a scar on it. I wear most of them with pride. A sacrifice made in order to keep beating Cystic Fibrosis. Looking at them, they are far from beautiful; yet the story behind them blows me away. I am a survivor, they tell the most detailed story of my war. 

I am going to post a few pictures below. But as you can guess, the position of my transplant scar is going to hold me from putting that scar on the blog. I don't want to offend anyone by what they feel they would see. But I will put a few of my other scars. 

This is, ummm, very scary for me to do. I have lived my life trying to cover up my battle wounds from the world. The reason? The world isn't ready for it, its human nature to stare and wonder. If I could stop everyone I see and explain it all to them and the reason I have each one, I would feel better, I could do it confidently. So I suppose I am not ready either, I am not ready  to not care what people think when they see them. So I beg of you to understand my shyness in doing this, in unveiling yet another ugly result of this killer disease.

Lets start with my transplant scar. Its big, its about 20 inches long. It starts from 6 inches below my armpit, makes a clamshell shape through my ribcage, and ends 6 inches below my other armpit. I had 58 staples to close that bad boy up. It now looks pretty amazing, it healed very well. The interesting part is on my right side of my sternum, you can feel where they cracked me open. I am a little lopsided HAHA! 

The chest tube scars. I had five chest tubes after transplant, each about the the size of your finger. I still am amazed that my body handled that many...honestly my body gets little woozy and sore when I talk about all this. I have 3 scars on my left side and 2 scars on my right. Each tube ran through a space in between my ribs and they were stiff, and I could feel it rub against my ribs. Those scars, although necessary, were a pain in my everything...

You all watched as I got my port, and now have it removed. Laila plays with this scar weekly. She likes talking about it, she remembers Mom having the "ball" in her chest and now its just a reminder that she can squeeze mom extra hard without having to worry about it.

My Gtube scar. I had a feeding tube when I was younger. I still remember my first week of high school basketball not sure how to address the thing coming out of my stomach. I could just quickly change with my back towards everyone. I could ignore it and just change in a stall. But it was my first step in just trying to be normal with battle wounds. So, I just got everyones attention and showed them, because I didn't want to have to worry about hiding. In college I had it removed and then as an adult got another one placed, and you were all with me as I got to get that removed too!

The battle wounds that make me the most anxious. I don't wear shorts, rarely wear shorter skirts, and goodness if you can get me into a bathing suit I will most likely have something covering me up! In my early 20s I was placed on an extremely high dose of prednisone and for way too long, and even though my lungs healed, my skin never could. It still is having problems (especially since I am on prednisone for life.)

You will see a few under my arms, and on my elbows, but the worst is my legs. I have stretch marks covering my entire thigh area, and now slowly going past my knees. A Zebra would be jealous of the markings. My skin is weak, and it hurts. I didn't wear jeans for years, and honestly, don't wear them too often now. I've tried to look at them as beautiful, but can never see anything but a disaster. Me telling you all this won't change my mind set although I pray that it would. Yes, I do hope it will help me with the worry of wearing shorts and skirts...I made a promise to myself after I wrote this I would start to do those things!

So this is me. This is my imperfectly perfect scared up warrior body.

Stretch marks on my legs, many still hidden under the shorts

My legs

My GTube scar and if you look just toward the right of that you can see some of my chest tube scars

Crossing off number 24. Get pictures of my transplant scars

Its only been about 1 week...

This house has had one crazy week. 

We were able to spend a good chunk of time in Destin, FL for a family friends wedding. These are the type of family friends that you call "Aunt" and "Uncle" you the kids care share the same found memories of Shoneys with. 

My sister, Angie, and our daughter, Laila, we both asked to be in the wedding. They all looked beautiful with the white sand and blue ways.  It was so awesome to watch it all happen. One of those times you watch the father/daughter dance and tears come because you remember when you were 6 and vacationing with them, now we are all grown up.

The Tuesday before we left, Jeremy got a call (if you aren't sure this means, think of it, I guess, as a job offer) to a church in Norfolk, NE! Unreal. Exciting. Nerve raking. Plus many more emotions. The way he told we was actually kind of funny, the poor guy was getting so frustrating cause I was being my ditzy self. We have learned a ton about Norfolk, about Nebraska, and talk a ton about it during our 36 hours in the car. Please keep Jeremy and our family in your prayers while he deliberates. And thank you to everyone who has given us advice so far. 

The last few days have caught up to me and I have been running a fever as high as 102. Thank goodness Jeremy could drive the entire way home because I kept falling asleep in the middle of a sentence. Today, I took a warm bath, medicated myself up, called the doctor, got on antibiotics, and the fever is down. Please pray that this will just take 10 days of pills, and I don't end up in the hospital again. 

People may think I complain all the time, but I'm not. I'm just letting you know that even though I am blessed with a miracle in miracle with this gift. Transplant life is still very scary. One wrong cold, or pills not swallowed could mean a life...my life, and I fought too hard to be here. I can be fine today and in the hospital with pneumonia the next.  I'm telling my story so that people can understand the real life behind it. The cold that Jer has, is a fever of 102 for me. There is no immune system, we transplant patients kill our in order to keep our organ happy where it is at. I'm not even that good of a patient, I try to live too much of a normal life. 

Keep and eye out for a post tomorrow. I crossed off an awesome thing on my bucket list and have been thinking how to share it. But I am just going to do it! YAY!!

And I ask again to keep Jeremy in your prayers!

He is Risen

I hope that everybody had a great Easter. We had a relaxing one filled with jammies, steak, and peeps in our yard. Yeap, we got peeped. Ha, its actually pretty funny...Laila loved it! Church services where very nice, and it was great to sing in choir. Jeremy had sunrise service so during festival I was up and down the stairs so I could sit with the family.

I had a doctors appointment yesterday and it was probably the best yet. I once again blew all numbers out of the water. Jeremy actually laughed as I dusted my shoulder off on the way back from PFTs. 116%...so as I brag once again, my lungs are probably better than yours. My oxygen was 100% my entire 6 minute walk, which I managed to step over 2,000 steps. My XRay was clear. My weight could probably get better, but nothing was said. The only thing is that my BP is still a little high so they bumped up my meds again, and may need to add another "agent" to help lower it if this doesn't work. The Dr. pretty much said I was one of the best cases...blush.

My team is finally realizing that even though I am a great case, that I never do things easily...like weird blood in my throat, or asking for a dog, or getting sick on holidays. But, this has pretty much been me since I was a child, just ask my mom, dad or sister. I have great timing. So after a few more questions yesterday Dr. Sonetti smiled and said, "Anything else? You want to travel to a third world country? Live in a dirt house underground?" HA, no...I think I am pretty much done asking to break the rules.

It is April of 2015 and its the first time I have been feeling "healthy" this year. Praise the Lord for giving me all the necessary therapies, meds, team, loved ones to help me fight CF and become a transplant patient. But of course, also for my hero I will never know...my donor. For his/her family for giving my a more than awesome gift.

Transplant isn't easy, the road is difficult, both physically and mentally. I've fought all my life and now, today, I get to breathe a little easier. Relax my stressed out mind and body. I am doing well, very well. I get to clean, run errands, do laundry, pack, bath Laila, and get ready to catch a train to Michigan. And I won't run out of breath, I can do it all and still have energy to entertain my child on the train.

Praise the Lord, for wrapping me in his arms. That tiny prayer I said over and over before transplant, is still being answered.

Short but sweet

After a little visit and a one night stay they finally told me what they thought was wrong...they weren't sure. 

I stayed overnight in order to run tests through the night and figure out what was going on. Nothing showed up in all the tests they did. All they knew was that the antibiotics were working, so they sent some orals home with me and said call if it doesn't get better. It did get better. I am just glad that I am healed up and my lungs never took a huge hit. Praise the Lord!

So, yes, I am doing better but not without getting side affects from the meds. I am so dryed out...like I had blisters on my hand because I was so dry. This winter just wasn't my winter. But again Praise the Lord that I survived it and warmer weather is coming. Windows are opened in our house and the germs are flying out.

This Saturday, Jeremy and I are talking to WELS nurses about our experience and how nurses made those times easier. I am looking forward to this one so much, not just because Jeremy will be there doing most of the talking (we all know I like to talk but I do get nervous) but because I love talking about my nurses. Heck, I named my lungs after 2 of them. Nurses work hard, next time you see one you should just thank them for all the work they do. 

These next few months are so busy...so busy. And I am so excited for every part of them. Next week my Mom flys in to help with Laila's birthday party. Thats right everyone, my little turns the big 6 in a few weeks. Oh she is as sweet as ever but she is growing way too fast. But more about that later.

I am working on my 100 list but these things are taking time. I love that I can accomplish things. Where do you all think my sister and I should fly this summer to knock a number off my list?! My goal is to cross off about 10 by the end of the summer, so I guess I should be hitting it harder than I am. One of the easiest ones has really become a hard one...I can not cook Country Fried Steak. For real, it turns out nasty!! But I am still working on it, I have tried it about 6 times now and am so gun shy. 

Hope everyone has enjoyed the last few days of nice weather. And I have convinced myself it isn't getting cold anymore...ha!