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.