My Moments to Breathe

Wednesday, December 17, 2014

I got this one too!

Has it really been that long? Guess I need to sneak in a blog post in December, so here I am. The picture you may ask? Thats "The Zell family from Ann Abor, MI!" most of you know my family tried out for Family Feud, and should know soon if we got on the actual show! Helping Mom work on her Cancer Sucks bucket list!

First I will say thanks for everything everyone did for my Lungiversary. It was a good week of spoiling the crud out of my lungs, whatever they wanted they got. I am alive because of my donor, and even though I know nothing about them, they are a person close to my heart. I am still hoping one day that the family will want to read our letters and that they will want to write us back. I pray often about that.

Thanksgiving was nice. After much mulling we decided to hop in the car for a crazy 36 hour trip to the Mitten so we could see family and be thankful with all of them. Good food, good laughs, good company! I brought a sled back that I fell in love with, its outside our house right now with a wreath. So cute, if you drive by check it out. I hunted for that!

Added a neurologist to my list of Doctors to see. He said there is no reason I should be having migraines and wanted me to make sure I don't have a tumor. Well, as most patients who are on tons of meds get side effects and I just happen to get the "migraine side" one. So, right now, I am not going to get the MRI. He gave me some medicine and it has been working so, well, literally haven't had a migraine in 7 days. Since the day I started this medicine. Only down fall...its suppose to make you sleepy but since I have been taking it...I don't fall asleep until about 4. The insomnia was getting better but...WIDE EYED right now. Naps about 8 am come in handy for that!

 Shannon and Francesca are still doing great! I had my "one year out" appointment earlier this month. I once again broke my own records and my Doc said I had the highest numbers so far. All I need to do is drink more water and exercise a bit more. And, yes, after the Christmas season, I do plan on getting my body is better shape and using my treadmill more than I do. I want to keep this girls around.

The best news that I smiled and started tearing up about was....drum roll...(ok it may not sound like a big deal to most people who read this, but honestly its huge!)...I don't have to go back to the doctors for 6 months (unless something comes up and I need help with it!) 6 MONTHS!! I have never gone that long since...since forever. I have never done that, I have always had my normal appointments every 3 months since I can remember...and now they say I'm "healthy" enough for the time to double. 6 months. Count them...6!

Now for the not so cool news. The following day I had my bronch and psh it kicked the crud out of me this time. While I was still sleeping they had informed Jeremy that I had infection but everything looked good for a negative rejection. BOO and infection. This was coming off the cusp of a cold I was trying to kick without help, as was doing it well. So my doctor just said I can try to kick this infection off by myself too. Well, that lasted all of 6 hours. SIGH, that evening I started to run a fever over 100 and chills...which are two big NO NOs in transplant land. So I took some Tylenol to relax my body around 4 am so I could sleep. Called the doctor bright and early in the morning to inform them and they gave me the sad news of admission. So, yes, I cried. This was my first December in 4 years I could do everything with my daughter and make it magical for her. I didn't want to spend anytime in the hospital let alone Christmas. So after talking to Jeremy, I convinced them to try oral antibiotics on me first. After awhile Kelly called back and gave me the deal, but would have to call back in 2 days if I was better.

 Praise the Lord, it worked. I coughed up all the blood that was left over in my lungs from the bronch and started to feel even better. There was more blood than I feel there should have been for a little longer, but the girls fought hard. I am going to talk to them about the way my body handles bronchs and what to do about that...I need the bronchs. My lips got cut and swollen from it, a fever, blood, and just felt yucky (that is the scientific wording I am sure...haha.) But it is working out so far and am resting, a lot, and listening to my body while trying to get everything done for Christmas (not complaining because I love the hustled and bustle.)

Not much else to report, and, as always, no news is good news!

Tuesday, November 18, 2014


Today is the day! I am 1 year from this very day that this wonderful gift was given to me. A shiny, blinged out, only blows glitter, pair of lungs. I will not even begin to count the number of times I have cried today. I started to count but have already stopped because all the texts, messages, phone calls, cards, posts, well they all make me cry. A wonderful, crazy, mixed emotion sort of cry.

But in honor I thought instead of hearing me write on about how excited I am (that can wait until tomorrow and the week of celebrating) and things that I sort of maybe remember...I decided to hand over my blog for the day. I gave it to the person who was with me from the moment the phone rang to, well, the person who is still by my side. I thought this person needed to write how it all went for him, his feelings. So here we go. Presenting...Jeremy Jon...

I was groggy.  We had taken a family nap. 

We took a lot of family naps.  Cassie was tired all the time.  When she wasn’t sleeping, she was on her oxygen more and more—and when she wasn’t, I was telling her that she should be.  Even dropping her off at the door for things like Wal*Mart and church (yes, we live across the street) wasn’t working anymore.  Those “exciting” outings took too much out of her and she would have to relax, use her oxygen, and, eventually, fall asleep.
A few months earlier we got together with the Husbys at a condo in South Haven.  Cassie spent 90 percent of the time in the room, sucking down air.  My mom told me afterwards that when the MI Husbys got back to the east side (the RIGHT side) of Michigan, the prayer chains started.  They saw what I was seeing every day.  Cassie was dying.  She was not breathing.  She could not keep this up.

So, yeah, Laila and I got to do a lot of things together.  And, no, I wouldn’t trade it.  I’m positive that having that daddy/daughter time while mommy napped or relaxed is why Laila still has her days where she follows me around and completely ignores anything Cassie does or says.  I love it.  But, still, there were times, particularly on Sunday afternoons (I know I only work one day every three weeks J, but when I do, preaching takes a lot out of me!), where I needed my rest, too.  So, Cassie in bed, Laila with her, me on the couch, we took a nap.

We were trying to figure out what to have for dinner.  It was snowing.  I didn’t want to trudge through the snow to start the grill, even though we had steaks thawed in the fridge.  That meant a tiring trip to the grocery store.  That meant me cooking.  That meant me washing the pots and pans and the dishes right away afterwards because I’d have a busy Monday and wouldn’t be able to get to them for a couple days…plus I was out of underwear and undershirts.  We decided we’d go out to eat instead.  And then it happened.  Cassie’s phone rang.  She looked. Lungs.

It’s gonna be ok, Cass.  Step one, I’ll call Marquardts to see if they can take Laila.  I remember trying to explain like 6 or 7 different things to Mike and then realizing I wasn’t making any sense.  Can I bring Laila over now?  Look back at Laila and Cass.  Laila is running around and jumping all over the place.  She’s singing about how her mommy is going to be able to run with her.  God, I hope so.  Don’t cry.  Be strong. Go hug your wife.  She’s gotta be going crazy.

Ok, Cass has her transplant bags ready.  I need to figure out what I am going to wear, knowing that it is cold outside, but I’ll probably be inside for the next three weeks.  I just need something comfortable to wear that won’t make me sweat, that I can wear for about the next 36 hours.  Stop focusing on this silly problem.  Go hug your wife.  She’s gotta be going crazy.  It’s gonna be ok, Cass.  I promise.  Jesus promises.  It’s gonna be ok.  I love you.

Remember your wallet.  Remember your phone and your charger.  Grab your laptop.
We got in the car.  It was snowy.  I called my mom.  Don’t cry.  I called my brothers.  Don’t cry.  I called my fellow pastors. Don’t forget to drive carefully…

We arrived about 90-100 minutes after we got the call.  It usually takes about 90 minutes…but somehow we got packed, took Laila next door, and still got there in the same amount of time.

We got there around 6 pm.  They said surgery was planned for 9 pm.  Yeah, right.  Ok, surgery is now planned for 10:30.  Yeah, right.  Ok,midnight at the latest.  Yeah, right.  They poked and prodded Cassie.  Hug her.  Tell her everything’s gonna be ok. 3am.  Time to go to surgery prep.  We went down.  Everywhere we went, there was NO ONE around.  It looked almost like a Walking Dead hospital.  Lights in hallways were only halfway on, if on at all.  Went to a prep/waiting room.  And boy, did we wait.  Alone.  No nurses checking in.  No Dr. DeOlivera saying everything was ready.  No nothing.  Just me and Cass.  Talking.  Silence.  Tears.  Talking. Tell her everything’s gonna be ok.  Smile.

We took silly pictures.  We looked at the clock…a lot.  Then, finally, around 6:30—a nurse!  We said good morning and she about jumped out of her crocs!  She was just there to weigh herself while no one was watching.  She didn’t know anybody was down here.  She’d check in to see what was going on.
7 am came.  They took Cassie.  Don’t cry.  Smile.  Make her think you’re confident.  Make her think you are unafraid.  If this is the last time you see her, make sure that she knows that you love her or you’ll regret it every. single. day. for the rest of your life.

I made sure they had my cell number.  I’ve given them that cell number 20 times.  I give it again.  To three people.  I go get another coffee.  And another. 

Last time, it was about an hour and a half in when Dr. Maloney came and told me the surgery didn’t happen. I looked around.  8:30.  Nobody.  8:45. Nobody.  9am.  My phone rang.  Surgery started about 20 minutes ago.  What?!  It’s actually happening!!  Call your parents.  Call your inlaws.

Facebook, Twitter, and Email.  7 hours of updating TONS of people (NOT complaining.  I was overwhelmed with how many people cared).  I counted 70 emails—just from the kids at school.   About every 90 minutes I’d get a call.  One lung in.  One lung in?! They took one lung out and put another one in.  How does that work?! More coffee.  Second lung in.  I cried.  I was walking to get an energy drink and I could no longer see where I was going.  They put new lungs in my wife.  I updated.  Constance texted me back.  I sat down.  I texted back.  I was overwhelmed.  I couldn’t function.  I couldn’t see anything.

Around 3 they called again.  They were closing her up.  It was successful.  I was going to meet with the surgeon and talk about how it went.  So I updated and then I went to the waiting room.  And then I waited.  About 4:30, Cassie’s dad said he arrived at the hospital.  I met him and we walked together toward the waiting room and, on the way, ran into Dr. D.  He smiled.  That’s a good sign, right?!  The three of us went into the waiting room.  He talked.  I listened.  I tried to process.  I tried to think of good questions.  Over and over Dr. D said that everything went really, really well, but, we can’t get excited yet.  Things WILL go wrong.  Be prepared.  Stuff WILL happen that is unexpected…expect it anyway.  One thing in particular (make a mental note of this, this is gonna be important) that Dr. D is not worried about, but will keep a close eye on, is that she is draining a LOT of dark red thick sticky blood.  They’d like it to be a little more translucent…a little more watery and pink.  But not worried.  Again, set backs WILL happen. My father in law and I, both at about the same time asked the important question…CAN WE SEE HER NOW?

We saw her.  We wore gowns and gloves and masks.  I told her I loved her.  I told her the surgery happened.  I told her everything went well.  I watched as 4 different nurses were checking 40 different things and realized that the best thing for Cassie right now was for me and Cassie’s dad to be out of the room.  We exited.

“You ready for a beer?”  What?! Am I ready to drink?  My wife just had major surgery and you want me to drink?! And then it made a little more sense.  It was time to celebrate.  It happened and it went well.  Not to mention that, amid all of the coffee and energy drinks, I forgot to get food in my belly too.  My tummy started to rumble.  I excitedly agreed.  We gave my cell number…again…and we left.  In the car, we went over everything that Dr. D said with a fine toothed comb.  We couldn’t find anything in what he said to worry over…except that she was draining too much dark red thick sticky blood.

I ate.  I drank two big beers.  My nerves calmed.  My adrenaline went back to normal.  It was time to, finally, sleep.  I got gowned, gloved, and facemasked.  I told Cassie I loved her again.  I told the nurses my cell number…again…and told them where I would be sleeping.  It was9:30.  I fell asleep.
At 1am the light in the room turned on.  “Jeremy?”  Check my phone.  1 am.  No phone calls.  30 emails.  I asked the nurse what was up.  They had called.  They needed to take Cassie back into surgery.  There was too much dark red thick sticky blood draining.  As we walked back to Cassie’s room, I tried to process what she was saying.  They were going to give her a “wash.”  They had to open her back up and “wash” through the area to make sure that it would drain the way they wanted it to drain.  I was confused, to say the least.  They were going to take her in 15 minutes.  God, NO! She made it through.  Do NOT let her die NOW!!  How serious is this procedure?  How long will it take?  Explain the process again? That didn’t help. This very kind, pretty nurse, for the third time, explained what was going to happen.   I still don’t get it!

“Listen, I know you are doing your job, and you’re doing a great job.  I just need you to tell me, should I be calling my inlaws to get back here?  They are in Lake Mills.  Sleeping.  Should they be here for this?”
“Well, Jeremy, really that’s up to you.”
“Listen again…uh..well…ok fine….Is my wife going down there to die!?”

So I went back to the room.  I chose to let Zells sleep.  I opened my bible.  I laughed.  Someday, picture yourself waiting while your spouse is in major surgery and read the first 90 psalms.  It is insane how much of it had a direct correlation to the feelings I was experiencing.  I laughed.  God knew what he was doing.  He is in charge.  We should fear, love, and trust in God above ALL things.  Never in my life did Luther’s explanation to the 1st Commandment mean so much to me.  Trust in him above all my feelings.  Trust in him above all the medical jargon.  Trust in him above the days and weeks and months of Cassie dying.  Trust in him above all things.  Recognize his almighty power…power he promises to use for your good.  Love him.  Love his care and concern.  Love his providence.  Love him for the fact that no matter what happens in the next 4 hours, you and Cassie (and Laila) will eventually be together forever.

They knocked again around 6.  Procedure done.  It went so well.  Cassie is resting.
I wish you could have seen the difference that I saw between post surgery Cassie and post wash Cassie. 
They put a 5th (!!!!!) chest tube in her tiny torso, but out of each one of those tubes was trickling tiny drops of watery, pink drainage.

My wife had an excellent surgeon.  She had a superb group of assistants (other docs and nurses).  She had a donor family that made a loving, kind, and selfless decision and gave my wife the best present that she could ever receive in a time when their hearts sank in sadness and grief. 

Today, November 18th, 2014, my wife woke up and got Laila ready for school.  As I’m writing this, she just got back from driving, out in this wonderful 9 degree weather, to get Laila’s favorite lunch from Panera.  She’s going to walk over to school and sit with her 5 year old and laugh.  And then she’s going to come back home.  She’s going to finish up some laundry.  She’s going to wash some dishes and tidy up the house a bit.  We are going to go out to eat tonight to celebrate.  And then, tomorrow, she’s gonna do much of the same…because she can.  Because she can breathe.
Psalm 30
1 I will exalt you, O Lord,
for you lifted me out of the depths
and did not let my enemies gloat over me.
2 Lord my God, I called to you for help
and you healed me.
3 Lord, you brought me up from the grave;
you spared me from going down into the pit.
4 Sing to the Lord, you saints of his;
praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime;
weeping may remain for a night,
but rejoicing comes in the morning.
6 When I felt secure, I said,
“I will never be shaken.”
7 Lord, when you favored me,
you made my mountain stand firm;
but when you hid your face,
I was dismayed.
8 To you, O Lord, I called;
to the Lord I cried for mercy:
9 “What gain is there in my destruction,
in my going down into the pit?
Will the dust praise you?
Will it proclaim your faithfulness?
10 Hear, O Lord, and be merciful to me;
Lord, be my help.”
11 You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
12 that my heart may sing to you and not be silent.
Lord my God, I will give you thanks forever. 

Tuesday, November 11, 2014

Its November!

Has it really been that long since I blogged? Well, you can all assume that no news is good news right now. I am still doing very well. I have been keeping myself pretty busy around here.

Cold season is here so I am trying keep it out of my house and out of my lungs. They are still doing blinged out and I am still blowing high numbers on my spiro. My weight is still up, my shakes are still on and off again, and my sleeping is still well, not there. My face still has aged about 20 years over this last year.

Yeap, its been almost a year since I was blessed with the gift of new lungs, oxygen, and new life. Jeremy and I still talk about it at least once a week. This week we talked about how tramatic of a thing we went through. I got to hear the parts that he personally were the worst. I got to tell him what the worst was for me. He wins this round, I slept through most of the scary parts HAHA!

But all month we have things lined up to celebrate, starting with the actual date (Next Tuesday...the 18th) and I am not sure how I am going to make it through everything without tearing up each time. I have said it a million times this month but I will say it a million times again...I am blessed. I got my miracle in a miracle. 

I am able to tell my story (was asked to do a talk in Lansing, MI a few weeks ago and now am lined up to talk to a group on Nurses in March) and not cough during it. I can go to Walmart and put the groceries away. I can wake up in middle of the night with Laila and not cough for 3 hours after. I can eat like a normal person and keep weight on easier. I can work. I can travel. I can walk across my house. I can carry Laila. I can laugh with Jeremy. I can keep up with my family. I can live. All those things I can do where as last year at this time I couldn't, I was dying and planning on how to get things accomplished before that time was here.

"I  still forget how sick I really am. I wonder if I need to give in more and just decide that this is the life I have right now, dying." This was part of my blog entry on Nov 10 from last year. I look at it now and wonder how I didn't see how sick I was. I was either just that naive/dumb or just that much of a stubborn German who kept up her can decide for yourself. But either way you decide, I was glad at the time that God made me what I was, because it got me through what I needed to get through.

Thank you again to all those who have so graciously helped me with whatever it was my family needed help with. Whether it was a meal, a good laugh, watching Laila even for that little hour so I could breathe, taking her on her "forever stay", cleaning, gardening, donating to Team Cassie, praying, writing encouraging words, or for even my little penny on a post-it-note. THANK YOU THANK YOU THANK YOU! 

Hope you all have a as much of a great month as I am about to have. LET THE CELEBRATING BEGIN!!

Monday, October 6, 2014

Getting normal

I am almost 11 months post transplant. Can you believe it? Yeah, me either. Its been on my mind a ton lately, and feel very blessed.

I had my 9 month post bronc (a little late because of an added bronc earlier this year) and everything came back rosie. I have no infection, no rejection. Praise the Lord, especially since I have Pseudonymous up in my sinuses. Oh, these lungs...I think I am in love.

Another sleepless night for me. Laila has already been up once for an extra cuddle and Jeremy is soundly. But me? I am up and writing this blog. I have a ton on my mind, my sinuses are stuffy, neck ache, and did I mention I have a ton on my mind? 

More good news: I am now (again) a member of the working society. Truly blessed with this one. I get to work out of my own house at my own pace doing something that I love. I get to be artsy/crafty and just watch things come to life. Plus, I have a very cool boss. If you can, check out SEW WHIMSEY. To die for.

It feels great to have a job again and be able to help my family out. Plus, it kind of just goes to show that I am doing so well. This makes me a little giddy, if you couldn't tell. It is a perfect job because the only "germs" I am around are mine and I can still put my health first.

I rejoined the church choir, and its weird. Not the choir, but the singing. I have to pretty much relearn how to sing the right notes, how to breathe (which my body is still very much trained on how to breathe like a CFer with cruddy lungs, so I have been working...trying to work...on breathing the right way. Even while I am just sitting here.) But am loving the opportunity to do it again. 

I have been able to pick up my camera more and more lately too. I am still giddy about this hobby as well. Practice makes perfect, so Laila has learned to be a little model....and really is becoming quite the diva in this category. 

She is still loving school, and I have been able to help out a few times to watch how she interacts and how her day goes (and I have walked her to and from school everyday.) Its nice too since Jeremy works at school everyday, he gets to pop his head in a see her and what she is doing. It doesn't hurt that she gets an extra Daddy hug too. Her teacher is great, and beams with love for all the kids! Just love getting the little story about Laila during her day. Makes me feel like I miss less that way.

I am slowly, very slowly, getting ready for the fall season and the busy few months that are coming up. Much to celebrate again the next few seasons. Still praying, my donor family has comfort and one day reads the letters we sent. I think about my donor daily and wonder what he/she was like. I still see so many odd differences in me after transplant and would like to know if that comes from my donor....they must have like tacos and peaches. They must not have liked leftovers as much!

It is 1:30ish in the morning and I am yawning up a storm, if only my body and brain could connect! Guess I will try some frosted mini wheats and at least relax so my body can get some relief. Hope you all have a nice Tuesday, mine will be full of laundry, working, and Walmart. And that still makes me smile. 

Friday, September 19, 2014

Another little battle

I went to the ENT (ears nose throat) on Wednesday to see what has been up with my sinuses and those pesky migraines. I was looking forward to it a little because I knew something was finally going to be done and I could go back to feeling 100% better. I do just want to throw it out there for all the people who say they are dying when they get sick....this feels nothing like dying. It stinks, it hurts, and its not comfortable....but its not dying! 

I saw a cat scan of my face and wow do those things look crazy. I learned that through multiple surgeries my sinuses have been opened up pretty wide. I relearned that I will always have a thick mucus wall. I learned that I have a massive deviated septum, so much so that when I get those headaches it makes my right side worse and can (and does) make both my ear and my jaw hurt. I learned that I have chronic infection as well as an acute infection (boo) so they took a swab so they could culture it and figure out what was going on in there. But the best thing I learned was that surgery most likely wasn't that answer since everything seemed pretty open, just sore.

As of today, I learned one more thing....

I learned that I have a case of Pseudomonas that can hopefully be taken care of with the antibiotic Cipro. Oh, and I also learned I cultured ANOTHER Pseudomonas that will NOT be taken care by that antibiotic. So they are also putting me on a nasal rise of an antibiotic and also a "topic"...UGH. They are going to watch me very carefully since I have already had the bug that is drug resistant. They want to knock this all out, fast and completely. So in 2 weeks if this doesn't work we go on to the next thing, and if that doesn't work we try to see what more doctors would do. This is life. 

Tears and frustration today. I know it hasn't even been a year and I have been doing amazing....but its just that I got a taste of that amazing, and I want it back. Now.

The good news is, last night I blew my best Spiro a 3.35. So thanks lungs for keeping your crud together and just being incredible. I have given them a few extra squeezes today. This meant that on Monday I do not have to go to my transplant clinic appointment (because it was not even a month ago I went to start the whole sinus stuff and was doing well then.) I just have to go in on Tuesday morning for my 9 month bronc (even though I am 10 months of yesterday!)

So lets hope for a fast and wonder recovery with little problems. The next 2 weeks are time to kick some CF junk again. A little battle to keep winning this war!

Side note: Next Saturday is Team Cassie's Beerfest in Ypsi, MI. I am traveling back and hope to see many of your pretty faces. Need info either let me know or check out the Team Cassie Facebook page!

Monday, September 8, 2014


My nights since transplant have been full of no sleep. It is really starting to wear on me. I have dark circles and bags-under-bags under my eyes. I am starting to feel and look pretty old. If I could just sleep, several straight hours of wonderful sleep. If you are ever up between 1-4 and are bored, shoot me a text and we can keep each other company. I wish I could figure out what it is that is standing in my way and causing me to get the rest I need at night...therefore needing to crash in middle of the day. Between that and my sinuses I heard myself, through tears, under the words, "It just feels like I did with CF...tired and in pain again."

I think it is just because I had such a wonderful taste of being wonderful, and know its silly things getting in my way, that make me feel and say those things. My lungs are still so great, and I can do so much still without getting out of breath...its just lack of sleep and migraines that stop me now. C'mon! Now I do know this is better than the alternative, and better than my old lungs, so I really don't mean to complain. I'm just tired and need sleep.

The good thing is that since I am used to having chronic discomfort and the such, I can still manage to do most daily tasks. Its just that I put them off as long as I can. Thats totally normal, right? No its pretty much just pure laziness. I just want to have all that energy again. Suck it up Zell!!

Now that I said it and wrote it, I won't again mention least not in the blog. But Jeremy will have to hear about it, bummer for him. 

I was asked and am signed up to talk at the Lansing, MI Wine Event for the CFF and am pretty excited to do so. Its not often at all that I get to talk in MI. And this will be my first talk post transplant! 

Hope you all are enjoying this little bit of summer left!

Friday, August 29, 2014

Last bit of Summer

Sorry I haven't blogged in awhile and left the good ol' blog in such a sad state. The last part of summer has been a little many good ways.

First, let me update you all on my mom. Praise the Lord! She is cancer free! It was stage 1 (meaning it was only in her uterus) and she is now home and doing the healing and healthy thing. She is doing great and the family is now back to what we wanted. HEALTHY. Pretty sure we all need to order some sort of Tshirts that read something sort of like this. 

Angies's: I survived Pulmonary Stenosis. 
Mine: I survived a double lung transplant. 
Mom's: I survived uterine  cancer.
Dad's: I survived these three. 

^^True Story!

Meanwhile this household caught strep. Thankfully, I am pretty sure that it is now gone and hoping that it won't come back again. I had a doctors appointment this week and everything is still glitzy! My weight is stable at a whopping 105. My blood pressure is ok for all the meds I am on. My chest xray was clear. Oxygen was at 100% and heart rate perfect during my 6 minute walk. My PFTS were at 112%. And that is all with chronic sinus infection and migraine! BOOM! (I am hopefully getting into the ENT soon and most likely schedule a clean out/surgery for those sinuses....which I am totally OK with as long as it works.)

Enough with all this medical/health mumbo-jumbo and unto the fun hectic stuff.

We took a vacation to South Haven, MI. Sun, sand, a fun town, and a beautiful lake. I love this little tradition that we have started. Plus many little trips around WI!

I was also fortunate enough to get the OK to fly and go to the other side of the states. I got to go to California. And got to go with Angie and take pictures (and be a bridesmaid) in our friend Katie (and Marks) wedding. Holy Buckets. It was so cool, SO COOL! I could be anyone I wanted to there. Its so different from the Midwest. Heck, I even wore lipstick (I know, right?! Crazy coming from a girl who pretty much loathes the stuff.) On a Cysters note...I could walk the whole time without running our of breath, there is no way I could have done that pre transplant. But with my glittery bling I was normal and didn't look at the hills like they were a spawn of Satan. I had no problem with the any of the 20 we walk. This new life!

Laila started school this past Monday. Kindergarten. Like full day, 8-3, five days a week kind of school. Another holy buckets moment. She was and still is super excited, granted she isn't so fond of waking up early every morning. But that takes five minutes of Mom snuggles and the grump face is gone. She has been such a trooper with her new schedule. I am hoping this continues and even get a tad better. She is growing up too fast, moms always warned me it goes by quickly...I never wanted to believe them! Looking forward to the long weekend with her, hopefully do something fun!

So that was the short story of the last month of summer. If I said everything I think this blog could have been super long. But all these things definitely kept me busy, some stressful, some fun, so nostalgic...but none the less everything to thank God for. Every minute of this past month I have been able to take a step back, breathe and thank the Lord that I was not only here to do it all. But pretty much everything turned out the best way it could have.

Bye summer, hello fall!

Tuesday, August 5, 2014

More prayers

The summer of celebrating and living life to the fullest found its road block in the Zell house. Maybe after this we can all just stop life for awhile, sit down, take a deep breath and think or do nothing.

As I was celebrating 8 months post transplant and we were all happy that everyone in the family was finally doing well, our little world came to a stop with one phone call. (Side note how one phone call can stop peoples life...good or bad.) Mom was diagnosed with Uterine Cancer. 


Here we go again.

The family has to be on point again. We got this. Moms got this. Thankfully, God has this.

Mom had surgery today to remove the cancer stricken organ. My prayer I have said over and over again came out all day, "Dear God, please wrap your arms around Mom. Wrap them tight." She put on her brave face once again, the one she has had for over 30 years, and did what she needed to do when she needed to do it. 

The surgery went well, Mom is doing pretty well. We pick her up and hopefully pick her up tomorrow to come back home. They will run a few tests and find out more about what is going on later this week/early next week. Many more prayers, please! 

Cancer sucks. But our family can get there again: healing and healthy.

Tuesday, July 29, 2014

2 Cities

By now most of you know the love I have for my home town...and really the whole state. But as I was driving around with my Dad today I really sort of missed it.

There was a ton of traffic, sirens blaring every hour, planes over head, a coffee shop or something convenient on every corner, and milk is about a $1 cheaper per gallon. It is full of life and great for people watching. It is where my most of my family is, the people who have cared for me my whole life. It is where my childhood bedroom is and where I can get the best night sleep. Ahhh, Ann Arbor. 

I grew up in an average size subdivision, Forestbrook. It has a pool, nice neighbors, and small cemetery which holds General Terhune from the Revolutionary War. I still drive into this neighborhood and just feel a bit of joy. I am back home and settle into a childhood state.

It is where most of my CF journey took place, they helped me stay as healthy as possible at the University of Michigan. That M mean on a lab coat is pretty awesome. My doctors, and even more so my nurses, were hard workers. The CF gene was discovered here in Ann Arbor, that's just huge. That hospital was like a second home, and I was fortunate enough to love only 15 minutes away from a place that helped me survive. 

I am proud to point to my hand and say Ann Arbor when people ask where I was from in Michigan. It is such a diverse city. All sorts of people live here. Heck, even the city itself goes from country land to huge city and everything in between. I have always felt like Ann Arbor was my own little world with everything I needed. 

I do like Hartford, and the longer I live there the longer it seems that I can fit in (besides my Maize and Blue shirts, Tigers gear, and my Amen in middle of the prayers....sorry you can take a girl out of Michigan but you can never take the Michigan out of the girl!) I enjoy trips to Walmart, the smaller city living, the walking to the local ice cream parlor, and wherever you go you run into at least one person you know. I remember telling Jeremy I always wanted to be in Cheers....where everyone knows your name, ba-da-da-da-da-da! Well, that was sure answered, and yes I do like it. 

I like being close to Milwaukee and Madison and the towns between. I love that we are so close to church and school. I love friends I have made and that I can hang out with them and act like myself, I am becoming more comfortable. I love that I am in the same state as the "Wisconsin Zells" now and since I am getting healthier I will be able to go up to the farm and laugh at all the funny stories and memories. I like that we are close to the SEM and Cedarburg. 

Wisconsin is where my life was saved through transplant. My two favorite doctors are from the University of Wisconsin, and I would not trade them for every one else. And really all my favorite (besides 2 from UM) are working in that hospital. They have a huge trust factor with me and y heath. And the plus if they are so patient as I learn how to be  transplant patient vs a CF patient. I know how to do CF and do it well, I am still growing in the whole transplant thing. 

I have been pretty blessed.

Two great cities I can call mine!

Monday, July 21, 2014

More 25 Things!

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 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

Its in the past

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

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%. 


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" much so that to do any of those things just to feel oxygen in my body again is nothing. I would do all that 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

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 even rubbed my sinuses, a miracle that if you have never had 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

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 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 will never ever get old.

Sunday, April 27, 2014

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

Wednesday, April 23, 2014

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!

Thursday, April 10, 2014

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 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.