My Moments to Breathe

Wednesday, April 20, 2016

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!

Tuesday, March 22, 2016

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!!

Friday, February 12, 2016

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!!

Saturday, February 6, 2016

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!!!

Wednesday, January 27, 2016

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)

Saturday, January 16, 2016

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. 

Wednesday, October 14, 2015

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!!