Monday, July 21, 2014
My brain has been a little foggy this past week, and seeing as I haven't done this in 2 years...I thought I would give everyone a tiny glimpse into Cassie. Not CF patient. Not transplant survivor. But me, Cassie.
So here is another random 25 things you may or may not know about me....
1) when my parents were picking my name my dad settled on Cassandra, but told my mom he would pretty much only call me Cassie. Even when he married Jeremy and I he used Cassie in the vows.
2) There are about 30 pictures of Laila hanging in my house. and I still feel I could hang about 30 more. (Yeah its 2 of my loves put together...my daughter and photography...)
3) I was not a good student in school. I mean behaved pretty well, never had detention and the one time I did it was taken away. But I wasn't a studier.
4) I have low self esteem and I am a huge fan of self deprecating humor.
5) I miss wearing shorts. (way to self conscious to wear them cause some meds messed my skin up)
6) One of my favorite movies is The Sandlot, and love to quote it.
7) I want to go back to school but am too scared to do it.
8) I was on the yearbook committee in high school.
9) A few clever hashtags crack me up. Too many annoy me. #ilikehashtags #hashtag #toomanyhashtags #annoyinghashtags #doihaveenoughhashtags #guesswhatanotherhashtag #hashtagjusttohaveanotherhashtag
10) Since I love to eat and love my family...Thanksgiving is naturally one of my favorite holidays.
11) Give me a coloring book and crayons and I can be pretty entertained for some time (this makes me feel and sound like a child...but I honestly do not care!)
12) When I was younger I always wanted to be good at something (i.e. sports, class, singing, etc.) but never was. My mom used to tell me good at being nice matters. I never believed her until this year. Hey everyone, my mom was right, being nice really does matter!!!!
13) I love to dance. But my favorite place to dance is in my parents kitchen while getting ready for a meal. (And I passed this one on to my daughter)
14) I love the game of cribbage.
15) I hate sprinkles.
16) A piece of artwork I did in college was in a gallery at a few colleges in the Ann Arbor/Ypsi, MI area. I normally don't tell people this.
17) I like to play video games and watch marathons on Netflix (hello Game of Thrones and The Walking Dead...)
18) Pink is my favorite color. Its the girlie side of me coming out (yeah yeah yeah, I know im like all girlie.)
19) I was offered to be an assistant coach to a JV team at Ypsi but declined it to go to school and help my dad and Eric coach HVL that year
20) Blackbird by the Beatles is my favorite song (and if you look you will see Blackbirds on the Team Cassie shirts this year!)
21) I don't have a sense of smell. So when I try to pick a candle, lotion, or anything like that...I need someone else to tell me if its good or not. And if I wanna know what its like you have to describe it in words like "fresh, warm, cool, sweet...etc."
22) I don't have to use an alarm clock (besides for medicine) because my body always knows when to wake up in order to have enough time in the morning. This used to be better in my high school and college days.
23) Nicknames: my mom calls me Babydoll, my dad calls my Cass-a-boo or Sport, my sis calls me Nitty, Laila calls me Mimi, Jer calls me Sandra, my bestie calls me Bestie...and I love them all
24) I was born in Oregon
25) My husband is a Pastor, my Dad is a pastor, my grandpa was a pastor, my Great Grandpa was a pastor, and a bunch of uncles/cousins/family are pastors too. Welcome to the WELS!
Friday, July 11, 2014
Tomorrow is 1 year "anniversary" of my dry run. Totally crazy, right?! I am feeling pretty blessed that a year from the date that was very dramatic in my life, I am sitting in a chair, breathing and watching TV with my little lady. BREATHING. AHHH!
I know I had told people that that day was hard on me. But I never really said how hard it was. It messed with me more mentally than physically, but the physical bruises, soreness and marks all over my body (including the marks were they were about to cut) just added to the mental mess up.
But, YAY, I can say that that is in the past and I can truly just move on from that day. They weren't perfect but now I have these gorgeous set of lungs that blow out all the beautiful glitter they can store. I lived long enough to get those lungs, even if the first set were not meant to be.
What a huge sigh of relief!
Thats it. That is all I am going to say about it. It doesn't matter much anymore.
Everything is still going very well. My lung function is high and now that my prednisone is lower I am finally able to sleep again (say goodbye to dark circles and a puffy face!) Plus my anti-rejection meds are getting lowered each week. Less pills is just always a good feeling, it gives my body a little bit of a break!
In order to celebrate my dryruniversary, I will spend all day running around doing errands and playing with my daughter, all while taking those deep breathes! Bring on the oxygen!
Wednesday, July 2, 2014
This is now how I look at life:
Before transplant, while I watched and felt myself fall farther into the end stage of cystic fibrosis, I was a sad and very exhausted person. I woke up everyday in order to take care of my family and fight for another day to live. I went to bed hoping the next day would be a little better and maybe I could squeeze in a few tasks that day. I was out of oxygen. I was tired. I fought hard and my job was to eat, take my meds, and breathe using only the 20% of my lungs that worked. I didn't take care of my house, husband or child very well. I held much of my thoughts and sickness close to me, not letting too many people really know how or what I was feeling both mentally and physically. Yes, I let people in to know some of it. Heck, pretty much this whole blog is all about it. But I didn't tell the whole truth. My lungs hurt. My body hurt. My emotions hurt.
I wasn't living.
I was dying.
I just didn't really get it...until now.
I am just grateful that at the time I didn't really know how bad I was. I am just so thankful that I didn't mull over it too much and just did what I had to do when I had to do it. I am glad I was stubborn and that didn't realize death was just a few steps away. I am glad my body was stubborn and wouldn't quit. It scares me when I think about it now. It scares me to know that in a very big reality, right now at this moment I would probably be dead. It smacks me in the face, hard. Dead. Leaving so many things undone. You all know that I was afraid to leave Laila motherless (and c'mon who would comb her hair, Jeremy would have just cut those beautiful curls.) Nobody would be here to fold Jeremys socks or flip his omelette. Not that I ever thought I, as in ME, was important in their lives, but the person I was was important.
But that was then and this is now.
I can live now. I can breathe and get oxygen now. Do you hear that sound?! Me either, I am breathing and don't hear all the crackles, wheezing, and gurgling in every breath. I don't hear the oxygen machine pumping air in the next room. I can sleep flat on my back or any side, or my stomach...whatever I want (although I still use two pillows most night because my body is so used to being in that position.) I can run around all day and not be exhausted. And when I am tired, its not because I am not getting oxygen, it is because I am out of shape. I can walk on the treadmill for a long time on a good speed and when I am finished I can walk off and continue on my day. I am enjoying exercise.
I don't have to constantly have to worry about dying. I play with Laila, do crafts with her, take her places, run with her, laugh, dance, be a jolly kid myself. I am healthy and healing and life is a miracle. I look at things different. Why fight with people or let the little things they do bother me so much? I am living. Stop and smell the flowers, enjoy the sunshine, make rolls with dinner, people watch, help and smile at people. I am thrilled to be here enjoying this rainy day in Hartford.
I wake up and the first thing I do is take sanitize my hands, check my temp and blood pressure, use my inhaler, check my lung function on my spiro, do my ONE neb, pop my pills and go do whatever it is until my cell phone alarms to take my next round of meds. 8, 12, 4, and 8 are my times to make sure Fran and Shannon stay happy in their new home. I don't count pills with every pop anymore. I smile when I have to chew my tums. I drink a glass of water to flush everything out of my body and keep it clean. Yes, this transplant will forever rule my life, as much as my CF does. The difference being that this transplant saved my life from this nasty disease which was killing me a little more everyday. CF consumed my life in a totally different way. I get lab work done at least once a month, I listen to my body (seeing as it has only been 7...almost 8...months since my life changed) and try to rest. Life is just better when you can live.
I am not dying.
I am living.
I get that now.
Wednesday, June 18, 2014
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.
Tuesday, June 3, 2014
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.
Wednesday, May 14, 2014
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.
Sunday, April 27, 2014
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