Sunday, April 27, 2014
This is just to make it all "blog official" and all. I mean I really could write so many blogs about how happy I am to get that silly feeding tube out of my body, but I am sure you all know by now how wonderful that was.
I had said it before, but I will say it again. Getting that tube out was like the last physical reminder of how sick I was and how close to death I really was. I still can't believe how close I was. I don't think about it often, but I wonder if I would be here today if I had not been blessed with these wonderful lungs. Would mine have survived this long? I was at 18% 6 months ago and fighting to just walk across the house. I thank God I never REALLY knew often bad off I was, I am not sure I would have been able to handle it if I had.
I was coughing. I was coughing up blood. I was too skinny. I was weak. I was suffocating. I was spending my days just trying to breathe, let along live. I wasn't a full person. I was that healthy girl in a sick girls body.
But thats all gone. That is all in the past, and now I can look towards life. Breathing, walking, living. This Cyster is living. I am a survivor of a double lung transplant. This all just blows my mind. 6 months ago until today has been quite the journey, a very wonderfully eventful journey. My journey that I get to share with all of you, and gladly so. You all have known every step of this journey, from getting sicker, to coughing up blood, staying in the hospital, enlisting on the transplant list, hearing my slowly dying, to transplant, and now here I am..."healthy!"
I am not having trouble gaining weight. I don't feel or hear myself breathe. I easily walked 28 minutes on the treadmill with an incline and good speed, followed by a minute of jogging. A MINUTE OF JOGGING! And I still walked another minute for cool down, and wasn't out of breathe. The little bit I was wasn't because of my lungs, but because I am not in shape. CRAZY...CRAZY! A minute may not sound very long, but besides a little race with Laila, that was the first time I really used these lungs for more than chores, and walking. I JOGGED!!!! (Yeap I am in training mode for a little something coming up in the next few months...)
Getting that tube out, was like freedom. I am winning a huge battle, and still keeping my eye on the war! I can not even explain how great it feels to be able to say that even though I still have CF, CF doesn't have me. I am a survivor. I am a fighter. I am an accessory free woman!
Goodbye death. Hello life! 90. Get my G-Tube out
Wednesday, April 23, 2014
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
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.