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Laila caught some kind of nasty bug last week with a nasty nose, cough, sore throat and fever (it got up to 103.6, and I was a little worried.) We took her in to see her Doctor, who luckily knows a ton about my situation so does everything she can not only to make Laila E. healthy, but to make sure the bug stays away from me. YUCK, it didn't. I am pretty sure I am sitting on this couch right now with a cold, and know I should call the doctor....just do it Cassie. Ok hold on.
There done and done. I guess when I write things down, like in a blog, I realize how stupid I sound when I don't do things like pick up a phone and make a simple call. My coordinator isn't concerned because my FEV1 (volume I breathe out) hasn't gone down, I don't have a fever and I have been able to keep my diet and pills up. So maybe just a nose spray to keep things moving, and make sure to drink tons of liquid to flush those lovely kidneys. PHEW glad I called though.
Laila is now on the mend as well, just a cough and since she has seen her mom as a CF patient coughing things up all the time. I was able to easily coach her on how to cough and spit nasty stuff out to feel better. She is such a good learner. (This is pretty much the most disgusting thing I have ever been proud of...totally puts in in the category of "you know your mom has CF when...")
The CFF Great Strides fundraiser was this past Saturday so Laila (antibiotics and all) and I made the trip over to Michigan so we could walk with out team. It was a great year. I don't even know where to start. We had the coolest Tshirts ever, so many people walked with me, my friend Jon surprised me and flew in from California to walk with me, Ryan actually broke all the rules and hugged me...plus I got to meet his and Sues kids, my Dads softball team was playing across the street so I got to watch some of that, and to top this all off: I WALKED (easily) THE ENTIRE THING!! Yes, me, little ol' CF patient/5 months post transplant survivor, was kicking some butt and showing CF who is boss.
This was an amazing feeling. This weekend I could prove to myself that I can do things normal people can do. I was normal. Count your blessings when you are able to walk and carry things at the same time, I now do. Count your blessings when you can shop and cook, I now do. Count your blessings that you can walk and talk at the same time, I now do. Count your blessings that you can walk a distance and end with a smile instead of a feeling a suffocation, I now do. I count my blessings probably more than people actually know. The simple things in life and becoming my simple things now.
Breathing and walking...it will never ever get old.
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
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!
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.
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.
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.
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.
