Thursday, April 10, 2014
Ahhhh! The last of the reminders of my death are now gone. Now its all about health and living. Yesterday I was able to get my feeding tube pulled! I can't even begin to tell you how wonderful that felt. Absolutely wonderful. It may sound corny, or somewhat dramatic...but I don't mean it to. That tube was really the last reminder of how sick I had gotten, how close to death I was. It was one of the last steps I needed to be fully aware of where I am now. And how blessed I have been that the journey has been as smooth as it is.
These past 2 weeks things have been hitting me. I ran with Laila. I walked around running errands for 4 hours without getting tired. I was driving in the car singing at the top of my lungs and holding that huge note Elsa busts during "Let it Go" and was able to actually hold it plus some. I am able to have parties. I can keep up with five 5 year olds. I can get the groceries, cook, clean, give Lai a bath, and do laundry all in the same day...plus not pass out at 9 pm. What is all this?! IT IS LIVING. I am LIVING. I am breathing, my body is gaining weight and strength, I have more energy. It makes me a little giddy.
I know that Jeremy is happy to have a wife back. I know he is excited and relived that he doesn't have to constantly pull double or triple duty. He gets to be a husband, dad, and someone who can come home and try and relax. I am glad I can somewhat give him that back.
I also know how much happier Laila has been. She doesn't get placed infront of a tv whenever she is home. Now she gets to play, laugh, help cook, do chores...learn chores, make art, and just have a Mom. Really and truly if you think about it, I have been sick for about 2 or 3 years....she doesn't remember what its like to have a "normal" Mom. And now that she does, she is the happiest little girl. She is learning what a Mom is like as much as I am learning what its like to be a Mom (in a way.) She is my buddy!
My family gets to have their daughter, sister, niece, cousin back...I was told they missed her. I missed all of you too. Love that I can keep up with you all know. Still looking forward to my trip to the outlets and Cedarburg with my mom and Aunt. You girls owe me one :)
Thank you all so much for everything you have done for us. It is still very humbling when people tell me how they have been praying so hard, or how happy they are for me, or that they read this blog, or that they follow me story, etc. It is crazy! I actually had another very humbling and exciting thing happen...I was asked to write an article for Forward in Christ and should be coming out in the May edition. That was nerve racking!
My spiro (measurement of my lungs) keeps climbing as well. I am sad if I get anything below a 3.0 and when I started I was excited to get above a 1.0! It is awesome to watch and feel these lungs expand and just love being lungs. I still love my old lungs, and respect them even more for all the work and crud they went through. They worked harder than any organ should have to work, and the did it as much as they could. CF just won over. CF sucks. But these lungs will never know CF. The rest of my body still does and the rest of my body still hates CF. But luckily since these lungs are so amazing, my body is able to fight that CF even better now. Kicking some CF butt and taking names. I am weighing at 104.4 with a BMI of 18%. Of that 18%....the goal I was trying to reach pre transplant. Well, I reached it and plan on passing it. Take that CF!
Hope you all are enjoying the warmer weather. I know we have been. Laila got her new bike for her birthday, and we have been teaching her how to throw a ball and how to grip a bat the correct way. Patience. I keep thinking in my head....we have a ballerina not a ball player. But I am determined to make sure she at least knows some softball. Its in the Zell blood.
Thursday, April 3, 2014
I got the results from my bronc and I have no infection and I got rid of the minor rejection I had! So exciting! The glitter in these lungs just keeps pouring out.
Today has been a cold, rainy, lazy day around here. I did get some laundry done and Laila is bathes (because of Jeremy) but I am kind of listening to my shaky, tired, bags and circles under my eyes body today. Just staying in and watching some TV...getting caught up on the little things I should have done awhile ago. I am looking forward to bed so much, trying to fight a nap. Insomnia is a crazy thing. Hoping that if my medication gets to be lowered now, since the rejection is gone, the nights of sleeping soundly for more than 3 hours will come back. There was a very short 2 weeks that I got to sleep in the last year or so...I want it back.
The most exciting thing is that on Wednesday I get to get my G-Tube removed! Oh happy day...the last real physical reminder of that sick journey will be out of my body and my healing can continue. I will be able to sleep more comfortably on my tummy, I will have a shirt with out a bump in it, fluid won't ooze, I can eat more, I won't have to eye sore....you get it..I'm excited! Oh freedom!!
Mentally not checked in today. A mixture of medicine, weather, and things in my life changing.
Til another blog.
Wednesday, March 26, 2014
The last few days were spent in Madison as a follow up for the minor rejection that my bronc showed last month. Even though most of the first day is sitting walking from clinic to clinic, sitting in different rooms waiting, being the subject of many tests; and the second is being drugged up and having object shoved down into my new lungs...I am starting to really enjoy days in that city. I am looking forward to the warmer weather so that when we do stay there, we can walk around the city more and enjoy it even more.
I could not have asked for a better doctors appointment. I walked close to 2000 feet in my 6 minute walk all while staying at 100% oxygen. My chest X-Ray looked gorgeous. I gained 10 lbs (I have obviously been getting my chub on...don't stand between me and food because I just may mistake you for a taco with extra jalapenos and try to eat your fingers.) Which means they would reconsider taking my feeding tube out! Plus I blew my PFTS...any guesses what they were before I say it? I mean its no big deal...they were only 108%!!! Yeap folks, it means they are more than perfect. So not only are my lungs made out of glitter, sparkle and bling but they blow out glitter, sparkle and bling too. These lungs and I have an awesome relationship and I can't wait for my donor family to know that!
Does anyone else just get as excited as I do when I see that 108% for lung function and 100% for oxygen?! I NEVER remember seeing that high of a number. So this is what you all feel like and why you can go non-stop from morning until night (and then even past that...) I had every right to be a little jelly pot! This is awesome!!
I am done with pulmonary rehab as of a week ago, but luckily I have my treadmill to keep my going. Exercise to a CFer is much like food is....we consider it part medicine. Its just part of the everyday routine. The transplant coordinator said you could for sure tell I was working out, and it is contributing to my healthy lungs. HA as I type that I just have to giggle at those two words put together HEALTHY and LUNGS....they have never gone together when describing me. HEALTHY LUNGS.
My bronc went well, and am just waiting to hear the results. Crossing my fingers that everything turns out well, no infection, no rejection, and then I can lower some more meds for the time being. the steroids have wicked side effects and I personally would love to get back to 5 mg a day (I am at 10mg 2x/day) so that I can get some sleep, the puffy can be controlled more, my sugars can go back to a more normal level, etc.
I have to say that the icing on the cake came when Dr. S. walked in the room for my bronc and said he talk to the boss...my PA...and she agreed that my feeding tube can come out!! HOLY SMOKES...this girl was grinning from ear to ear. You know what that will mean? Nothing is in my body except all the organs that should be there. No IVS, no port, no tubes...I will be free from being tethered to anything....its been years since that was even an option. Now I just have to wait to hear when I can go back to get it removed. It is a simple procedure...they don't have to drug me up, keep me in the hospital, or even give me as IV. Just pull it and go basically! I will be sitting by my phone just waiting for them to call in the next few days!
Sigh. I love oxygen. Healthy. Lungs.
Tuesday, March 18, 2014
It has been 4 months since the day that changed me, the day that the hope of a longer life became a little more real. Boy, they sure are right when then say that the transplant is a journey, it doesn't end when you go home from the hospital.
I am proud of my story, my journey, and how well I am doing. I am a fighter, a determined little woman who is trying not to let anything get in my way of living a longer, healthier life. I am not going to let shakes, needles, people, the chubbies, a little hair lose, or a tiny rejection stand in my way from now being able to live. I am not going to let this rob me of everything I have accomplished during this journey (so far.)
I went back to Michigan for a short visit (and a Team Cassie fundraiser....the Great Strides is getting close so look for some notices about it soon!) and learned so much while I was home. I learned that many of my loved ones thought I was going to die this year, that I didn't have much life left in there. The fight was still there, but the life wasn't. I learned that it affected people more than I thought, that people were just watching me die and not being able to do much more than ask God for help. I thought I had so much life left with the fight that I didn't doubt that everyone who knew me so well, knew I was NEVER going to give it up. It was nice to prove you all wrong haha!! I did it, so far, and will continue to do what I need to do in order to get things done.
My journey has been a pretty smooth one. I watch and read and hear all sorts of stories (keep them up because I love learning your stories too) and realize how truly blessed I am. My surgery went smoothly, the lungs were more than a perfect match, I didn't get an infection, I was out of the hospital in 2 weeks, home in 3, broncs have gone well, lung function is 97% after 3 months...ok you get it, the list could go on. I am doing well.
This doesn't mean I don't have my struggles, that I don't break down and cry, that I don't pout about how rough it is. I do. I do all that. But then it all comes back to me how it going when I see another Cyster past away before a transplant, another case of chronic rejection taking over somebody new lungs, a Fibro still in the hospital fighting. Prayers sent to them; prayers sent of thanksgiving that I here and breathing. I am living.
I am still shaking like a polaroid picture. Its old and at the point I just may ask for some meds for it. My blood sugars are very high due to the meds getting pumped into me to knock out the rejection, thank goodness for that nasty insulin stuff. I am getting the prednisone chubbies, but this time around I am watching more of what I eat so I don't balloon too much. My hair is getting a tiny thinner. The dark circles are getting worse. My skin is breaking out. Sleep pattern is messed up. I am roided up so badly that I have what I call "bad steroid days", which means I need to be able to lock myself in my room and just breathe so I can calm down. This list could also go on....but all in all isn't it worth it?
I fully admit, I have changed. Not the core person who I am, but yes, there are changes. Some are silly ones...I LOVE JALAPENOS. Like as in I can't get enough of them. I crave them for every meal. What a minor change, but still a change. I have more energy, now I am able to not only shop for the food, but I can easily cook it, clean it, and do other things easily too...bath Laila and myself, play with her, and stay up and watch TV with Jeremy past 9:30 pm. This may not sound like a ton to you, or a big deal...but to me its huge. Just huge....I can have a little life even if its just a "normal" life.
I get to act like that healthy girl in a kind of healthy girl body. I am no longer stuck in a body that can't function...one that wants to do things so badly, but the thought alone of getting out of my pajamas just makes me exhausted. I work out for an hour straight now without getting too winded, and the little bit that I do isn't because I am not breathing, but because I am still out of shape. I am thinking about doing a run this summer, just because I can. I ran over to school and back with Laila the other day, it felt SO good. SO GOOD. I ran. I am healing and healthier.
My Cystic Fibrosis is doing alright too. I am still working on those 6 lbs so I can get my feeding tube pulled. I have a few doctors appointments next week so I am hoping I will hit my goal, or close to it by then. Even though I hate broncs because of the IV and the drugged up state I am in for the day, I am looking forward to seeing how my rejection in doing and maybe being able to lower my prednsione a bit more. And I am closer to getting off of my blood thinner....yeah which means I get to eat more of the veggies I love. Plus this past week they picked up all of my oxygen from my house....no tanks, no tubes, no at home machine, just no extra stuff needed. Again, its one of those moments you thank God for everything he has done for me, my family, and my new lungs.
My alarm is going off which means is routine time! Meds, meds, blood pressure, meds....lets get it done.
Tuesday, February 25, 2014
My Old Lungs, fresh out of my body! Thanks for working as hard and as long as you did, now your work is done and you can breathe easily!
I guess it is time to write down the little I remember from this huge experience. And seeing as I am going on night number 4 with no sleep I feel it is the perfect time. You will have to be warned now that there will be HUGE holes in this story. I lost a huge chunk of time and the things after surgery while on all the meds that I still am hearing new things I did every week.
It was about 4:30 On Sunday November 17th. I was pretty tired that , had just woke up from a nap and was on the computer, dreading the thought of getting ready to go get something to eat (I was feeling too sorry for myself to cook or clean...so it was such an easy option.) My phone lite up and I ignored it for a second, knowing Mom could wait another ring while I pinned this awesome thing on Pinterest. HAHA joke was on me, it wasn't Mom...my phone said that magic word, LUNGS!!! What came out of my mouth next was for sure not the nicest thing, out of excitement I got a little sailor like and then answered my phone (to be fair it was my only huge freak out moment for the next 24 hours.)
The voice on the other end was my coordinator, and she had some great news. Lungs that were a match were mine if everything went well. With a huge smile and a ton of excited fear, I said YES and got my instructions. We again needed to be there pretty quickly.
I called my family to let them all know that another set of lungs were potentially mine again. They were all excited and had that same fear in them as well. How could you not? They told me the plan was from Dad and my Aunt to leave early in the morning and come to Hartford first, make sure Laila was set, and Dad would come out to Madison to be there with me...ok so I wouldn't know he was there. Maybe it was for more him and Jeremy at that point! Mom and Angie would catch a flight later that day. You see, the night before Mom had a weird dizzy spell, fell and literally cracked her teeth out of her head. We were all very worried and she needed to make sure everything was ok with her before she could come. Thank goodness everything was ok (she is still bruised and working on the big fix 3 months later!)
Now the hard part, telling Laila and trying to explain it while saying "see you later"...I realize through all this that I don't say bye to anyone. I have never been good at byes, but this one was one I could fathom. It wouldn't be a bye but a see you later. She was excited, sad and not real sure how to feel until I told her that I could run around with her this summer and push her on the swings...she wanted me to hurry up and leave after that. So we called our loving neighbors who without a second thought took her, made sure she was happy, slept well and headed off the school the next day. Laila told everyone....yes everyone that Mom was getting new lungs. She told everyone at school with a fist pump, she told the cashier at that outlet store, she even told Santa Clause! Like I said, she was pretty excited!
I stayed very calm, and just kind of got ready. Packed a few more things, washed my face and brushed my teeth again, threw on a CF sweatshirt, and said a prayer (over and over again) while I was hooked up to my nightly antibiotic. Jeremy got home, we stood there for a minute, he packed the car, I sent out a few more texts, and we jumped in the car and headed off to get me some new lungs!
The car ride was much calmer this time, seeing as social media blew up we were very thrilled to see all the love and support from all of you. We were getting messages (100s of them), emails, texts, phone calls, Fb notifications...you name it we were getting it. It was very nice and overwhelming to see all the out-pour. Thanks!
We got there around 6:30 and there was no wait before prep. They were all looking at about 11-12 o'clock surgery! WOW, huh, that early? remembered from my dry run, meds, blood work, xray, shower, praying, all that. I thank the Lord I was so calm this time, I even got a nap in. Well, 11, 12, 1 passed by and there was still no word. They finally came back and said they were waiting for an operating room. They ended taking me down to the holding area where Jer and I were honestly the only 2 there with one dim light above us. We stayed there until about 7 am when they came to get me ready. November 18th, at about 7 am I said see you to Jeremy, texted my family 1 more I love you and I was off to the operating room.
This is where my story gets very fuzzy. Very fuzzy. My memory was so messed up that I couldn't remember the code to get into the house...and I am the only one who at the time knew it. (not smart by the way!)
The room was cold, and after I slowly made my way on the very thin table, they wrapped me in very warm blankets, I said hi to the surgeon, got juiced up, started cracking jokes again, watched the lights get blurry and then....
It was who knows how long. I don't remember waking up. I remember some people there, but I couldn't see a face my vision was that blurry. Its a good thing I knew voices. Much like last time I will write a few things I do remember:
Angies hair was in a bun.
Worried about my moms teeth.
Wanting the breathing tube out...and out NOW.
Sitting in a chair, passing out every 3 minutes.
Talking for the first time.
Wondering where Jeremy was sleeping.
Having to pee. (even though I was already...)
My dad wanting to go for a walk with my so badly, and then getting to.
How big my arm was getting and them telling me I needed my port out.
My mom spending the night and I drove her crazy. CRAZY! But she handled me well.
My Aunt Diane coming up and Angie staying in Hartford.
Saying see you to all of them and letting them know I was fine.
Seeing all the tubes coming out of my body, and being in a good amount of pain.
....That is the first 48 hours or so.
My vision started to slowly come back over the next week or so. And everytime I took a walk I would get stronger and didn't need assistance from anything other than someone putting all my chest tube boxes on my pole. It was a great day when Dean my PA came in a pulled that last one. He was a little angle and in my medicated state I told him so. Thanks Dean! I was learning all my new meds and learning what they were for, how and when to take them, etc. (Insert headache here!)
I had a few visitors while I was in in b4/5, one of my pastors and the principle from school came to have a devotion and the Lord's Supper with me. It was so awesome that they came, I just wish I could have remembered it more. I did my best!
A woman who had a double double-lung transplant (yes there are 2 doubles there) and her mom came to lend a supportive hand. I heard all about both of hers and the little things that went on. At the time I laughed at a few thinking it would never happen to me...not wanting your main support person to leave your side for a long period, being nervous to fall asleep thinking something could happen, hallucinations. Well, I ended up with all of them. Jeremy knew everything and I didn't he knew how to take care of me and what to do, I didn't, Luckily he got to work from home once we ended back her. The sleeping thing was very weird. Yeap, everytime I fell asleep I would be scared. I thought I was breathing while I was sleeping. I had nightmares of asthma attacks and even woke Jeremy up questioning if my lungs were working and panicking....you need lungs o work in order to live. I knew this by now. The hallucinations weren't so bad...funny really. I saw Disney princesses and characters wherever I looked, even in the wood grain on my hospital floor. I also thought I would see things scatter across the floor like someone throw something or dropped something. So what would Jeremy do?! Pretend to throw things. SIGH.
My in-laws came and helped us celebrate Thanksgiving. It may not have been everyone ideal Thanksgiving meal or attire or even venue...but it was right were I was supposed to be. The next 2 nights they would stay late and keep my insomnia brain occupied with cribbage and euchre! It was nice to have a little distraction now and then!
And then there was Tay, who spent a few days (all day) next to me doing nothing but really everything all at the same time. Just having her there was what I needed. As a matter of fact the surgeon was pretty sure she should have been his PA and asked her a few times to interview. Ummm...Tay work in Madison?! I may have pushed this a little too. But she is happy in Ann Arbor so I guess I can't complain! I love you Tay!
My legs blew up about 20 lbs and they hurt so badly I could barley walk let alone wear socks or shoes. As a matter of fact, the first week all I could put on my feet were mens extra large slippers...so whenever I would go out that it what I would wear. Shopping, church, doctors...you name it I wore them.
It took 2 weeks and a ton of work in the hospital, thats it, just 2 weeks after my life changing operation. I was out and starting to live a post transplant life. I am still in awe of this entire thing. It was painful. It took a ton out of me (and still does) physically and mentally. Transplants are such an amazing and awesome thing that turns your world completely around. You start new while trying to keep the old you together there too. I am grateful for what happened to me and that I was able to bounce back as well as I have. I do have a mild case of rejection right now and still have rsv...but the meds and prayers are both flowing. The doctor said it was pretty normal for this to happen in the first 6 months. Yes, I am still taking this beyond serious, but my nerves are trying to stay as calm as my brain will let them. I want to keep this bling!
I know that my story doesn't make much sense, and there are so many holes that need to be filled in. Heck, maybe Jeremy should write and entry so you can get his take. I do remember things more and more, and if Jer does ask me things then it all comes back to me. So if you want to know something from either of us about anything related to this, don't hesitate to ask. We love to share this story and hope that it may just get a few of you to sign that donor line on your drivers license. You really should consider it and talk to your family members too. Not everyone gets the chance to live long enough to get there organs, but you could save someone elses life!
This is my story...x2!
Tuesday, February 18, 2014
Wow! It is 3 months to the day that I had my transplant. And it took all 3 months to finally feel semi human again! My shakes are still bad, still working with my diabetes, blood thinner, and insomnia...but the rest is turning out better than I could ask for.
To celebrate three months out, I got to go to a clinic appointment. It was the first time in YEARS that I wasn't nervous at all to go. I trusted that I was going to do some amazing things. My chest XRAY turned out great. As a matter of fact you can see it up there on the left, the one on the right was right before transplant. Big difference?...I'd say so. I still have a small spot of the left side of the picture from the infection that I am fighting off (with the help of good ol' meds) but it shrank a huge amount in the last 2 weeks, no worries there. Just keeping an eye on it. You can also see my port in the picture on the right.
My 6 minute walk improved and again I stayed at 100% the whole time, isn't that an amazing number to see?! I think so. But speaking of numbers...I blew my pft and it was a 97%
Let me type that again because I can't believe it either...
I am so teary eyed just looking at that number, its amazing. If I could hug my lungs and my donor family right now I for sure would. My breathing is out of control good, and thats still with that little spot on my lung. Amazing. Just amazing. I honestly don't know the last time I felt this good. Maybe grade school? I am, for now, what I wanted to be...a healthy girl in a semi-healthy girls body. Happy tears.
Now to all the little things we talked to the doctor about:
One of my levels for an anti-rejection medicine is way off....way too low. So he upped my prednisone by quite a bit for the next 2 weeks, and said my sugars will be a little crazy again. BOO. I was really hoping my sugars were going to go back to semi normal, although I am getting used to weird sugars and just eating and covering (or correcting) it still isn't fun. But anyways...the level....they are going to work on that. Double check it tomorrow to make sure it wasnt the test that got messed up a bit (I have a bronc in the morning. Prayers again please.) But this is something we can fix.
I can now pick up Laila. So who is more excited, me or the little one?! I am pretty sure as excited as I am...Laila takes the cake. When the doctor gave me the ok today she gasped and ran over, "Lets practice!! Mom, stand up and pick me up!!" And then when I did pick her up she said while giving me a huge hug, "Mom, I missed you!" Pull on the heart strings for sure. I get my girl back all the way!!
Now for my challenge: I got the OK to get my GTube pulled in a few weeks until Dr. S talked to my PA and she said she didn't like that thought. SIGH. Then the discussion/argument (...a nice argument) started. (insert time laps of about 20 minutes for the discussion here) To which the results were what neither of us really wanted, but a good compromise. If, no I will re-phrase that, WHEN I gain 6 pounds she will give me the thumbs up and I can have it removed. And in the mean time I should be having a chocolate shake a day (not even kidding here.) CHALLENGE ACCEPTED!!
It was a great way to celebrate 3 months out. I thank the Lord for this wonderful gift every day. I can now start living again!!
Thursday, January 30, 2014
I still haven't been able to get a good night sleep and we are guessing most of it has to do with anxiety. I guess I need to get rid of things that cause anxiety...at least the things I can control. That will be my main goal this week.
I had a doctors appointment on Tuesday to follow up with my cold, just to make sure everything was OK and that it wasn't anything else. I still weigh only about 89 lbs, but slowly trying to learn how to eat and be OK with eating and correcting later. Medically induced things are crazy....def harder to control. But still gives me hope that once I figure it out more I can make it stable. Then with a good diet and exercise things will all work out.
My chest X-ray looked great and the bronch from the other week didn't show anything except that I had a cold. They knew I had a cold before I did.. Wish I had the warning HAHA!
My 6 minute walk went well, kept an 02 level of 97%, but once I took my mask off it jumped straight up to a 100% in literally 1 minute. Thats an awesome number to see and honestly it never gets old. The other number that rocked and made me pretty much cry (happy tears) was from my PFTS. My lungs are now functioning at 84%. You need me to say that again?! 84%.
And thats with a cold and only 2 months out. I just wanted to squeeze my lungs and donor family so badly. Thanks for this new look on life....well, really, just thanks for life.
Its crazy and I really just can't wrap my little anxiety ridden brain around that fully...not yet at least.
I did get an antibiotic just in case there was something in my sinus (they took a culture) and just to make sure whats in my chest doesn't settle and turn into anything else. To keep my shiny new lungs as shiny as when I first got them. So I have been doing my PEP, exercise, and just doing some deep breathes.
I am starting to feel pretty good and the chest area seems to be getting a bit better...all of it. I know that some of you have seen the site and how crazy it looks. Well, it is all healing very well and the nerves are growing back...which causes discomfort and my ability to wear certain shirts cringe worthingly impossible. So I have been pretty much living in the same few outfits, depending on what area the nerves are growing back in. But I can rock them with some good nail polish, hair style, and accessories.
I also am starting a desensitization to sulfa drugs this week. THIS. IS. WEIRD. All my life I have been told and only known to stick away from these drugs. And now I am going to willingly put them in my body slowly and hope that I don't react to them. Fingers crossed and prayers sent please. In this process I was also told that if it works I am not able to ever...let me type that again...EVER....miss a day or my immune system will freak out and never ever accept the drug again. I mean I know that I am already on a good routine of other meds that can't be skipped, but those are ones too that my body won't let me take is for some reason I skipped a dose for the day. Hmmm, doesn't that sound like a good reason to have stress therefore some anxiety? Add it to the list of musts...kick another anxiety out that I can control.
But even with all that I am so glad to be able to breathe easier and know in a year I will look back at this journey and my scar and know it is out of love that I did it all. The pain with numb. The memory of the pain will numb.