Friday, September 19, 2014
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 yet...at 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 post...as 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 it...at 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
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 hectic...in 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.
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
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
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
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!