My Moments to Breathe

Tuesday, March 18, 2014

Four months and breathing

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 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 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. 

1 comment:

  1. I'm a 31 year old Mom and wife with CF waiting for a transplant. I've been following your story and am inspired by you.