Wednesday, June 18, 2014
I am back! That was no fun being sick. But here I am 7 months to the day that I had this my miracle and I am back to my base line, PLUS!
I had a doctors appointment today and got to see how my bling is working in its new world. And they are just blowing out so much glitter (now when I think of this glitter I think of it as that super fine glitter that is so beautiful that you just can't stop staring at it!) Blowing out like glittery glitter! My lung function FEV1 is now at 114%.
*RUBS EYES TO MAKE SURE I READ THAT NUMBER CORRECTLY*
Yes, I typed and read that right, 114%!!! Tears just thinking about this right now. 7 months ago I was praying to just make it as long as I could, hoping the transplant would come before my death did; and now my lung function is better than most of yours. And I know that was gloating a tad bit, and no, honestly, I am not too sorry about that. My lungs have always been so cruddy that I am going to take this feeling good, sucking in oxygen and blowing out glitter thing to the next level. I will gloat and not be ashamed. Proof that my miracle came with a side of miracle. First, I get lungs and its a success. But then to add the miracle of doing so well, so easily, and so soon. I fought to get to this point. I am here and I am proud.
I now get to go in every 3 months because I am doing so well. Its almost a normal thing! My appointments have been going so well, and I still am not used to seeing good numbers and hearing good news. I have a great team behind me in Madison, and am grateful for them over and over.
My weight is up to a good solid 106. I have muscle instead of twigs. I have curves where I did know I could grow them. I am becoming a true survivor with such a sweet story, and one that I could and will tell over and over again. I love my story and journey, even the hard parts that made me who I am. I love it. I love lungs.
I am now able to do things like walk a few blocks away with my daughter and friends to get some ice cream, and walk back without having to stop, cough, or rest for the rest of the week because I did that. I don't have to pick a shower or Laila's bath for the day. I can do dishes every night. I can start to take pictures again, and even have a small job. I can write with pep in my type because I am not afraid to die and leave Laila motherless, Jeremy wifeless, or my family without their family member. I am "normal."
I am not going to say this is all sunshine and roses. Because like I said over and over again...this is a journey. I know that my story is a fairytale type story. One that I prayed for just as often as I prayed for the lungs themselves. A way to be this "normal" for everyone including myself. But, I do get frustrated. I take hand fulls of pills that change often . I get poked like a pin cushion. I run to Madison or call Madison with every sniffle. I hear a person cough and I cringe with the thought I could catch what they have. I check my blood sugar 4 times a day, then count carbs with every bite and take insulin at least 4 or 5 times. I shake, and shake, and shake. I started to loose some hair. I am sterioded up, and even though I am able to control it a bit better, I feel that extra pulse of energy come out. I have some puffiness. Food and exercise are a sort of medicine. Life revolves around a pretty strict routine with every portion of it dedicated to make sure these lungs want to stay with this body....and this body wants to keep these lungs. And this is all just the tip of the iceberg. But thats just it, its all just an a beautiful iceberg. My miracle is worth all of these "bumps" or "hassles"....so much so that to do any of those things just to feel oxygen in my body again is nothing. I would do all that x10....no no no x100!
Breathing is the most wonderful thing. Just sit and feel yourself breathe. That right there my friends, is a gift.
Tuesday, June 3, 2014
Oxygen is my drug. It has been 6 months now that I have been addicted to it, and I don't see that ending in the near (or far) future. My body got a taste of it after years of not getting it and it constantly wants more and does so well. Deep in my lungs.
Then I went and got sick. Yuck, what was I thinking.
I called the drs office four times in one week. SIGH. A trip to the emergency room on a Sunday morning reveled that I had strep throat. WHAT?! I know, right...a normal person bug. Now don't get me wrong, I was down and it hurt. And the worst part was this was all while my Mom and aunt were in from Michigan. It is never fun being sick when all you want to do is have good times with the girls. Luckily, they are wonderful women who let a sicky come along...mom even rubbed my sinuses, a miracle that if you have never had done...do it. That and some tylenol, best pain relief.
The girls left and the week went on, fevers, chills and a cough. I still went on with my daily everything, but knew I wasn't doing them as well or as happy, and my spiro was starting to dip (if it dips more than 10% it means CALL NOW.) Then came Memorial Day, it was a nice lazy day full of cribbage, sitting on the patio, and a long nap. My body was obviously trying to tell me something. But being the stubborn Cyster/transplant patient I am, I didn't listen and urge the drs more strongly until I woke up from my nap and an hour later, while sitting under a blanket with full sweat gear and the chills, I took my temp and BOOM a scary 104.1. Ummmm, yes I think a trip to Madisons ER was in order. Long story short, I was without a doubt admitted into the hospital...even through Laila tears.
I saw many of the nurses that took care of me during the big blessed battle 6 months ago. So, this will be the first time I have made this public, but I have to tell you that I named my new lungs. One Francesca and the other Shannon, who were both the best nurses I could have asked for during that time. They did a ton for me, and I was fortunate enough to have Fran this time around too. I also got to see other nurses, RTs, both surgeons, a few drs and nps, and I also got to see Dean who I called my chest tube angel (and also through a long drugged up Cassie story I ended up naming my phone after him...long story....)
I got a little beat up these past few weeks. I ended up having a touch of Pneumonia, para influenza 3, staff, high kidney functions, low white blood cells, and a sad looking CT scan of my sinuses. But with all that said, I am now home with oral antibiotics. This is a little beyond crazy for me. It is the first time I went in sick and whatever they were doing for me wasn't just a band-aid to help me feel better to get through life a little longer, it was the first time I went in and was getting medicine to get better. And I was told that more than likely I would make a full recovery. Healing and healthy and able to look forward to getting better. I could look forward to enjoying the summer.
This gift of new lungs has helped me turn into a little bit more of me than I remember. Now I will never be the old me ever again, and I will never put the pressure to be that person on me, but at least I am seeing new life. My life. It is all still a journey and a process that I will have to go through all day everyday. I will still never get away from Cystic Fibrosis and the transplant. It is a frightening, exciting, odd journey. One that I am proud to say I have survived and am still battling. My week-o-meds container is getting more fuller and much brighter, its actually really pretty. And to tell you the truth its not just pretty because the only color it doesn't hold is purple, but because all those little pills have a purpose and work together to keep these lungs stable and my life going. Gorgeous!
My body is still beat up, my mind is still a little fragile...I am learning to accept everything, including myself. One day I will share more of this with all of you. Try to help you understand the thought process and the way my body now is. I am healthy and healing.