7 months!

I am back! That was no fun being sick. But here I am 7 months to the day that I had this my miracle and I am back to my base line, PLUS!

I had a doctors appointment today and got to see how my bling is working in its new world. And they are just blowing out so much glitter (now when I think of this glitter I think of it as that super fine glitter that is so beautiful that you just can't stop staring at it!) Blowing out like glittery glitter! My lung function FEV1 is now at 114%. 

*RUBS EYES TO MAKE SURE I READ THAT NUMBER CORRECTLY*

Yes, I typed and read that right, 114%!!! Tears just thinking about this right now. 7 months ago I was praying to just make it as long as I could, hoping the transplant would come before my death did; and now my lung function is better than most of yours. And I know that was gloating a tad bit, and no, honestly, I am not too sorry about that. My lungs have always been so cruddy that I am going to take this feeling good, sucking in oxygen and blowing out glitter thing to the next level. I will gloat and not be ashamed. Proof that my miracle came with a side of miracle. First, I get lungs and its a success. But then to add the miracle of doing so well, so easily, and so soon. I fought to get to this point. I am here and I am proud.

I now get to go in every 3 months because I am doing so well. Its almost a normal thing! My appointments have been going so well, and I still am not used to seeing good numbers and hearing good news. I have a great team behind me in Madison, and am grateful for them over and over. 

My weight is up to a good solid 106. I have muscle instead of twigs. I have curves where I did know I could grow them. I am becoming a true survivor with such a sweet story, and one that I could and will tell over and over again. I love my story and journey, even the hard parts that made me who I am. I love it. I love lungs.

I am now able to do things like walk a few blocks away with my daughter and friends to get some ice cream, and walk back without having to stop, cough, or rest for the rest of the week because I did that. I don't have to pick a shower or Laila's bath for the day. I can do dishes every night. I can start to take pictures again, and even have a small job. I can write with pep in my type because I am not afraid to die and leave Laila motherless, Jeremy wifeless, or my family without their family member. I am "normal." 

I am not going to say this is all sunshine and roses. Because like I said over and over again...this is a journey. I know that my story is a fairytale type story. One that I prayed for just as often as I prayed for the lungs themselves. A way to be this "normal" for everyone including myself. But, I do get frustrated. I take hand fulls of pills that change often . I get poked like a pin cushion. I run to Madison or call Madison with every sniffle. I hear a person cough and I cringe with the thought I could catch what they have. I check my blood sugar 4 times a day, then count carbs with every bite and take insulin at least 4 or 5 times. I shake, and shake, and shake. I started to loose some hair. I am sterioded up, and even though I am able to control it a bit better, I feel that extra pulse of energy come out. I have some puffiness. Food and exercise are a sort of medicine. Life revolves around a pretty strict routine with every portion of it dedicated to make sure these lungs want to stay with this body....and this body wants to keep these lungs. And this is all just the tip of the iceberg. But thats just it, its all just an a beautiful iceberg. My miracle is worth all of these "bumps" or "hassles"....so much so that to do any of those things just to feel oxygen in my body again is nothing. I would do all that x10....no no no x100! 

Breathing is the most wonderful thing. Just sit and feel yourself breathe. That right there my friends, is a gift. 

D4/5 did you miss me?!

Oxygen is my drug. It has been 6 months now that I have been addicted to it, and I don't see that ending in the near (or far) future. My body got a taste of it after years of not getting it and it constantly wants more and does so well. Deep in my lungs.

Then I went and got sick. Yuck, what was I thinking.

I called the drs office four times in one week. SIGH. A trip to the emergency room on a Sunday morning reveled that I had strep throat. WHAT?! I know, right...a normal person bug. Now don't get me wrong, I was down and it hurt. And the worst part was this was all while my Mom and aunt were in from Michigan. It is never fun being sick when all you want to do is have good times with the girls. Luckily, they are wonderful women who let a sicky come along...mom even rubbed my sinuses, a miracle that if you have never had done...do it. That and some tylenol, best pain relief.

The girls left and the week went on, fevers, chills and a cough. I still went on with my daily everything, but knew I wasn't doing them as well or as happy, and my spiro was starting to dip (if it dips more than 10% it means CALL NOW.) Then came Memorial Day, it was a nice lazy day full of cribbage, sitting on the patio, and a long nap. My body was obviously trying to tell me something. But being the stubborn Cyster/transplant patient I am, I didn't listen and urge the drs more strongly until I woke up from my nap and an hour later, while sitting under a blanket with full sweat gear and the chills, I took my temp and BOOM a scary 104.1.  Ummmm, yes I think a trip to Madisons ER was in order. Long story short, I was without a doubt admitted into the hospital...even through Laila tears.

I saw many of the nurses that took care of me during the big blessed battle 6 months ago. So, this will be the first time I have made this public, but I have to tell you that I named my new lungs. One Francesca and the other Shannon, who were both the best nurses I could have asked for during that time. They did a ton for me, and I was fortunate enough to have Fran this time around too. I also got to see other nurses, RTs, both surgeons, a few drs and nps, and I also got to see Dean who I called my chest tube angel (and also through a long drugged up Cassie story I ended up naming my phone after him...long story....)

I got a little beat up these past few weeks. I ended up having a touch of Pneumonia, para influenza 3, staff, high kidney functions, low white blood cells, and a sad looking CT scan of my sinuses. But with all that said, I am now home with oral antibiotics. This is a little beyond crazy for me. It is the first time I went in sick and whatever they were doing for me wasn't just a band-aid to help me feel better to get through life a little longer, it was the first time I went in and was getting medicine to get better. And I was told that more than likely I would make a full recovery. Healing and healthy and able to look forward to getting better. I could look forward to enjoying the summer.

This gift of new lungs has helped me turn into a little bit more of me than I remember. Now I will never be the old me ever again, and I will never put the pressure to be that person on me, but at least I am seeing new life. My life. It is all still a journey and a process that I will have to go through all day everyday. I will still never get away from Cystic Fibrosis and the transplant. It is a frightening, exciting, odd journey. One that I am proud to say I have survived and am still battling. My week-o-meds container is getting more fuller and much brighter, its actually really pretty. And to tell you the truth its not just pretty because the only color it doesn't hold is purple, but because all those little pills have a purpose and work together to keep these lungs stable and my life going. Gorgeous!

My body is still beat up, my mind is still a little fragile...I am learning to accept everything, including myself. One day I will share more of this with all of you. Try to help you understand the thought process and the way my body now is. I am healthy and healing.

Great Strides

Laila caught some kind of nasty bug last week with a nasty nose, cough, sore throat and fever (it got up to 103.6, and I was a little worried.) We took her in to see her Doctor, who luckily knows a ton about my situation so does everything she can not only to make Laila E. healthy, but to make sure the bug stays away from me. YUCK, it didn't. I am pretty sure I am sitting on this couch right now with a cold, and know I should call the doctor....just do it Cassie. Ok hold on.

There done and done. I guess when I write things down, like in a blog, I realize how stupid I sound when I don't do things like pick up a phone and make a simple call. My coordinator isn't concerned because my FEV1 (volume I breathe out) hasn't gone down, I don't have a fever and I have been able to keep my diet and pills up. So maybe just a nose spray to keep things moving, and make sure to drink tons of liquid to flush those lovely kidneys. PHEW glad I called though.

Laila is now on the mend as well, just a cough and since she has seen her mom as a CF patient coughing things up all the time. I was able to easily coach her on how to cough and spit nasty stuff out to feel better. She is such a good learner. (This is pretty much the most disgusting thing I have ever been proud of...totally puts in in the category of "you know your mom has CF when...")

The CFF Great Strides fundraiser was this past Saturday so Laila (antibiotics and all) and I made the trip over to Michigan so we could walk with out team. It was a great year. I don't even know where to start. We had the coolest Tshirts ever, so many people walked with me, my friend Jon surprised me and flew in from California to walk with me, Ryan actually broke all the rules and hugged me...plus I got to meet his and Sues kids, my Dads softball team was playing across the street so I got to watch some of that, and to top this all off: I WALKED (easily) THE ENTIRE THING!! Yes, me, little ol' CF patient/5 months post transplant survivor, was kicking some butt and showing CF who is boss.

This was an amazing feeling. This weekend I could prove to myself that I can do things normal people can do. I was normal. Count your blessings when you are able to walk and carry things at the same time, I now do. Count your blessings when you can shop and cook, I now do. Count your blessings that you can walk and talk at the same time, I now do. Count your blessings that you can walk a distance and end with a smile instead of a feeling a suffocation, I now do. I count my blessings probably more than people actually know. The simple things in life and becoming my simple things now. 

Breathing and walking...it will never ever get old.

There is nothing in me!

This is just to make it all "blog official" and all. I mean I really could write so many blogs about how happy I am to get that silly feeding tube out of my body, but I am sure you all know by now how wonderful that was.

I had said it before, but I will say it again. Getting that tube out was like the last physical reminder of how sick I was and how close to death I really was. I still can't believe how close I was. I don't think about it often, but I wonder if I would be here today if I had not been blessed with these wonderful lungs. Would mine have survived this long? I was at 18% 6 months ago and fighting to just walk across the house. I thank God I never REALLY knew often bad off I was, I am not sure I would have been able to handle it if I had.

I was coughing. I was coughing up blood. I was too skinny. I was weak. I was suffocating. I was spending my days just trying to breathe, let along live. I wasn't a full person. I was that healthy girl in a sick girls body.

But thats all gone. That is all in the past, and now I can look towards life. Breathing, walking, living. This Cyster is living. I am a survivor of a double lung transplant. This all just blows my mind. 6 months ago until today has been quite the journey, a very wonderfully eventful journey. My journey that I get to share with all of you, and gladly so. You all have known every step of this journey, from getting sicker, to coughing up blood, staying in the hospital, enlisting on the transplant list, hearing my slowly dying, to transplant, and now here I am..."healthy!" 

I am not having trouble gaining weight. I don't feel or hear myself breathe. I easily walked 28 minutes on the treadmill with an incline and good speed, followed by a minute of jogging. A MINUTE OF JOGGING! And I still walked another minute for cool down, and wasn't out of breathe. The little bit I was wasn't because of my lungs, but because I am not in shape. CRAZY...CRAZY! A minute may not sound very long, but besides a little race with Laila, that was the first time I really used these lungs for more than chores, and walking. I JOGGED!!!! (Yeap I am in training mode for a little something coming up in the next few months...)

Getting that tube out, was like freedom. I am winning a huge battle, and still keeping my eye on the war! I can not even explain how great it feels to be able to say that even though I still have CF, CF doesn't have me. I am a survivor. I am a fighter. I am an accessory free woman!

Goodbye death. Hello life!  90. Get my G-Tube out

Still breathing easy

I am still doing very well. You know except allergies this time of season like most people. Aren't they awful? This year hasn't been too bad so far this year breathing wise, but my sinuses are still crazy bad. And celebrating that I am able to sleep at night again. It is crazy how now that I can sleep, my body is just trying to get as much as it can. I am pretty sure if it were possible I could lay in bed all day and sleep for about 17 hours of it. But luckily because I am feeling so well, I am able to get up and get going. But no worries, I for sure am still listening to my body and taking it easy when needed!! 

I am pretty excited because Great Strides is coming up on May 10th and this year I am going to be able to walk the entire thing. It will be my first year being able to do so. May not sound like a big deal, but really it is. I can walk and breathe at the same time. WOO HOO! 

These lungs are still fantastic and doing well in their new environment. I am working hard taking care of myself to keep it that way. I am pretty sure that my donor was a strong person, a fighter, and their lungs had that too. Thank goodness, because they need to keep up with this "healthy" girl no longer stuck in a sick girls body. I can do those things I have only been dreaming of doing. And in a few months I will be able to start all that traveling I have been wanting to do for a few years now. The question is..where to go first?! 

The hole were my tube was is pretty much all healed. Feels so crazy not to have it in. I can put my hand there and its not there. I can wear tighter shirts and there isn't a bulge. I can sleep on my stomach. I am eat without having to worry about what my tube would do. Its freedom. 

I sent our letters to our donor family and just hope that maybe someday they might write back...hopefully...I hope. It was very emotional to first write the letter, second write what other people wrote, and third but it together and mail it off. How do you write that letter? It is for sure not a "thank you that even though your loved one passed away I got to live." Its more of a thank you for making that selfless decision. Just thinking of all this makes me pause, take a few deep breathes, hug these lungs and thank the donor family and God for this gift. I think of my donor and their family every day....multiple times. An awesome side note: I sent the letter on national organ donation day, how fitting!!

Easter was nice. We weren't able to get back to spend it with family, and family was not able to come this way. But my bestie made the trip for a short 24 hours so that we could worship together and spend some good Easter time with each other. I had another girl to sing with at church, and get dressed in our Easter best, and eat a wonderful meal together. The Easter bunny stopped by with eggs (including melted chocolate) on the lawn, baskets galore,and a little special treat. We made a turkey with all the trimmings! I figured since I missed my favorite meal on Thanksgiving, what a wonderful day to celebrate life all over again. It tasted much better than the hospital turkey :)

Hope you all had a great Easter and enjoyed the beautiful weather that has started! Oh and by the way, the new Forward in Christ is out...check out page 30!

I love my lungs

Ahhhh! The last of the reminders of my death are now gone. Now its all about health and living. Yesterday I was able to get my feeding tube pulled! I can't even begin to tell  you how wonderful that felt. Absolutely wonderful. It may sound corny, or somewhat dramatic...but I don't mean it to. That tube was really the last reminder of how sick I had gotten, how close to death I was. It was one of the last steps I needed to be fully aware of where I am now. And how blessed I have been that the journey has been as smooth as it is.

These past 2 weeks things have been hitting me. I ran with Laila. I walked around running errands for 4 hours without getting tired. I was driving in the car singing at the top of my lungs and holding that huge note Elsa busts during "Let it Go" and was able to actually hold it plus some. I am able to have parties. I can keep up with five 5 year olds. I can get the groceries, cook, clean, give Lai a bath, and do laundry all in the same day...plus not pass out at 9 pm. What is all this?! IT IS LIVING. I am LIVING. I am breathing, my body is gaining weight and strength, I have more energy. It makes me a little giddy.

I know that Jeremy is happy to have a wife back. I know he is excited and relived that he doesn't have to constantly pull double or triple duty. He gets to be a husband, dad, and someone who can come home and try and relax. I am glad I can somewhat give him that back.

I also know how much happier Laila has been. She doesn't get placed infront of a tv whenever she is home. Now she gets to play, laugh, help cook, do chores...learn chores, make art, and just have a Mom. Really and truly if you think about it, I have been sick for about 2 or 3 years....she doesn't remember what its like to have a "normal" Mom. And now that she does, she is the happiest little girl. She is learning what a Mom is like as much as I am learning what its like to be a Mom (in a way.) She is my buddy!

My family gets to have their daughter, sister, niece, cousin back...I was told they missed her. I missed all of you too. Love that I can keep up with you all know. Still looking forward to my trip to the outlets and Cedarburg with my mom and Aunt. You girls owe me one :)

Thank you all so  much for everything you have done for us. It is still very humbling when people tell me how they have been praying so hard, or how happy they are for me, or that they read this blog, or that they follow me story, etc. It is crazy! I actually had another very humbling and exciting thing happen...I was asked to write an article for Forward in Christ and should be coming out in the May edition. That was nerve racking!

My spiro (measurement of my lungs) keeps climbing as well. I am sad if I get anything below a 3.0 and when I started I was excited to get above a 1.0! It is awesome to watch and feel these lungs expand and just love being lungs. I still love my old lungs, and respect them even more for all the work and crud they went through. They worked harder than any organ should have to work, and the did it as much as they could. CF just won over. CF sucks. But these lungs will never know CF. The rest of my body still does and the rest of my body still hates CF. But luckily since these lungs are so amazing, my body is able to fight that CF even better now. Kicking some CF butt and taking names. I am weighing at 104.4 with a BMI of 18%. Of that 18%....the goal I was trying to reach pre transplant. Well, I reached it and plan on passing it. Take that CF!

Hope you all are enjoying the warmer weather. I know we have been. Laila got her new bike for her birthday, and we have been teaching her how to throw a ball and how to grip a bat the correct way. Patience. I keep thinking in my head....we have a ballerina not a ball player. But I am determined to make sure she at least knows some softball. Its in the Zell blood. 

Short but Sweet

I got the results from my bronc and I have no infection and I got rid of the minor rejection I had! So exciting! The glitter in these lungs just keeps pouring out. 

Today has been a cold, rainy, lazy day around here. I did get some laundry done and Laila is bathes (because of Jeremy) but I am kind of listening to my shaky, tired, bags and circles under my eyes body today. Just staying in and watching some TV...getting caught up on the little things I should have done awhile ago. I am looking forward to bed so much, trying to fight a nap. Insomnia is a crazy thing. Hoping that if my medication gets to be lowered now, since the rejection is gone, the nights of sleeping soundly for more than 3 hours will come back. There was a very short 2 weeks that I got to sleep in the last year or so...I want it back.

The most exciting thing is that on Wednesday I get to get my G-Tube removed! Oh happy day...the last real physical reminder of that sick journey will be out of my body and my healing can continue. I will be able to sleep more comfortably on my tummy, I will have a shirt with out a bump in it, fluid won't ooze, I can eat more, I won't have to eye sore....you get it..I'm excited! Oh freedom!!

Mentally not checked in today. A mixture of medicine, weather, and things in my life changing. 

Til another blog.