Saturday, February 11, 2017

Happy 5th Birthday to my Blog

5 years ago I decided to start blogging about my life. I wanted to take a more active role in the CF community, share my story with others, hear others' stories, and fundraise more effectively.

I believe I have accomplished all this and more! I can't wait to see what more the future has in store.

There were many topics I could have blogged about today, but I decided for a such a big occasion that I should talk about one of the biggest decisions I ever made.

Getting my stomach tube!!! Also it (apparently FB says) is "Feeding Tube appreciation week"

Let me take you back to when I was in 6th grade. (time travel music insert here). I weighed 45 lbs around 4'8 ft tall and ran out of energy so often, I'd stay in during recess or breaks to eat extra food and drink ensure. I struggled keeping up with my friends on Halloween, didn't have enough energy to even play sports. I struggled a lot, but I kept on pushing. Thanks largely to my family, friends, and care center.  Doctor C ( LOVE him) told us about the option of getting a stomach tube in the summer of 1997 (just before 7th grade was about to start). He said it could really help me gain weight and reach my age/health goals. My parents thought it sounded like a great idea, but they always firmly believed in letting me have a say in my health ( I usually always obeyed anyway). Dr. C and parents told me how much it could help. They also told me it was a surgery and I would miss a good chunk of school. For the first few months I had to have a long tube (not the small mickey buttons you see usually). They explained how feedings worked, how I could keep it bandaged, etc. I didn't want to miss school and idea of a tube hanging out of my belly weirded me out. I told them I wanted to think about it. We drove from Clinic to home (1 hour away). Later that night I told mom I would do it, but I wanted it done fast. I didn't want to chicken out and the sooner it was done then the faster it would be over. She called Clinic and Dr. C had me scheduled for surgery the very next day.

I had some complications with the tube & also got sick that year, so I spent half the year home schooled. I will never forget a classmate of mine calling me over the phone to ask me questions to put in our school newspaper, they eventually gave me a column and I kept the school updated on my health. My principal understood and my parent's received amazing support during the whole time.  My Grammer & Grandpa A (and uncle Brian) would come over all the time and we would pass my reading book around the room and take turns reading The Adventures of Huckleberry Finn. (tearing p thinking about my Grammer). <3 I didn't complain about the tube and was motivated to get healthy to be like the other kids.

It was crazy! I went from 45 lbs to 90 lbs just that school year. I grew a few inches and had more energy than ever before! I got to change out the long tube for a Bard button (it didn't deflate) after a few months. Bard's had a solid piece of plastic that they shoved into my stomach hole after taking the tube out. A few months after getting the Bard placed the surgeon told me about a button that was new to market called the mic-key button. It inflated and deflated for replacement, to make it less
painful. I had the Bard taken out ( oh and I cussed big time when they took it out, no pain meds, they just ripped it out) but, LOVED the Mic-key a lot more.

The hardest part was being hooked up to a feeding machine/ IV pole for 8-10 hours a night, because I never can sit still. I was stubborn at first and didn't like flushing the tube (after it was done). So my mom used to do an awesome Lon Chaney impersonation, all hunched over saying " Masteeer, I want to fluuush your tuube." My mom's humor made anything possible.  (picture left: Mic-Key & right: Hooked up for the night feedings)

By the time 8th grade started I felt like a new person. I tried out for the pom squad (and made it) something I could never keep up with before. I spent 8th grade, excelling at dance, school, and mostly my health!!! In High school I only missed a few weeks here or there, whereas in elementary school/ middle school I missed months.

Once I went to college I had it down to a routine, it was hard going home instead of hanging out past 9pm with friends. But I had to be hooked up by 9pm to be done by 6am to get my vest, etc done before I had morning classes at 8-9am. My health struggled in college, trying to balance everything. But I had some amazing friends who were there for me. *Cough* Stacey *Cough*

Stacey was someone I met and two weeks later we were looking for apartments together for the next year. We became instant best friends. When we lived together she would get my breakfast packed or pack my bag will I finished meds, or when I was sick she would make & hook up my IVs or feedings. Basically, I was living with someone who became my partner from the moment I met her.

So while yes, I did accomplish great things with my feeding tube, I had lots of help. A person with CF needs support from those around them to tackle big decisions or get through sick or rough patches. This was KEY!

Fast forward to 2012. I met Andrew, my now husband. Instant connection. We met in August, He asked me on a date in October, we were pretty serious by December. He read my entire CF blog and was never afraid to ask questions when I met him. He immediately jumped in, like Stacey, and helped me. He'd carry heavy bags, keep me company during meds, make my meds, etc. He moved in with me after my surgery in 2013 and I decided to move with him to Chicago the following school year. I didn't want to let this sweet, selfless guy go and I knew I couldn't do long distance. By Dec 2013 we felt I didn't even need my feeding tube, plus it was starting to leak around the edges a lot ( it was old).

Doc wanted to be sure, so we made a plan. I had to go without using it and still gain weight (and not drop), then I could have it removed. It worked. In June 2014 I had it removed. But typically when they remove them, they don't sew them up. The stomach wall sort of collapses in on itself and repairs the hole itself and the skin should too. Well, I had my tube for 17+ year sand in that time, my skin grew inward around the hole. I had developed a fistula. So after 4 months of waiting to see if it healed, the surgeon agreed it wouldn't.  By that point I had dropped from my beautiful 107 lbs to the 90s again. Because once they removed the tube the hole was still there and leaking everything I drank and small foods. I had an enzyme come out of the hole once. I was scared to eat or drink in public for
fear it would leak all over, bandages didn't even contain it. It was a mess. I was glad in October 2014 when they went in and sewed my stomach shut and sewed the skin closed.

My stomach took a while to stretch out again and eat correctly. But slowly with Andrew's help I returned to my original weight. So while I'm glad it is out and I don't have to deal with the mess, tube leaks, feeding leeks, raw skin. I will always be thankful for the 17 years with it.

I whole-heartedly think it saved my life!!!!! It gave me my future.

So kudos to big decisions to work towards big goals and accomplishing them!





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