Time Flies:
I've been blogging about all these separate things I have going on in my life. My lung function drop, the hospital stay, my stomach/ GI issues, the surgery, the Princeton IL CF walk, my fight with insurance for my Cayston medication/machine, and soooo much more.
So here's a bit of a catch up for everyone!
Let me start at the very beginning: read my CF history in this brief post here. Now let's skip ahead to the last 6 months.
From September 2014 - Feb 2015 I lost 3 CF friends ( it was really tough). In September my best friend with CF (from childhood & on) passed away from CF. I wrote a post about her journey, love for life, and how she was (& is) my inspiration to fund raise (read about Laura's Journey here). Then in October I got my
G-tube taken out/ fistula fixed and removed. YAY YAY YAY! The abdominal surgery was my 15th surgery, so I recovered pretty quickly. I'm beyond thrilled to say after 15 YEARS with a G-tube and needing to use it daily that I FINALLY can keep my weight up without it! Whoohoo! And I did a lot of clinical trials in the last 2 years, but in the last 6-9 months I lost a chunk of lung function and started having more Gastroenterology problems.
<3 Meanwhile, I got engaged in Dec of 2014 and it was one of the best moments of my life, I'm sooo lucky to have Andrew in my life (read his adorable & perfect proposal here). <3
By mid January I was struggling with daily tasks and chores. I dropped down to 48% from my baseline of 58-60 (sometimes I get 64%). I could tell my breathing was worse and I couldn't stand to feel difference in my breathing. I was admitted into the Hospital for a week. Doc decided I could finish the rest of the 3 weeks at home. So then I came home with another round of 2 weeks worth of IVs and stayed on Prednisone. I was super busy at the time trying to get healthy, finish studying for my career Real Estate Exam, and planning my CF Walk & our wedding. Whew.
I couldn't wait for the IVs to be done. Then I was bummed I didn't see a change in my health. My GI/. stomach issues didn't get better and my lung function didn't really go up at all after IVs. so disappointed and defeated.
Doc said even though I didn't respond to IVs that I shouldn't be discouraged. I hadn't done my Cayston medication (an antibiotic nebulizer I need to keep my Pseudomonas bug at bay in my lungs). Doc had to keep me on Tobi constantly from October until I got my Cayston machine last week! WHOOHOO!
That's right last week I got the Cayston machine the insurance refused to pay for (even though they would pay for the more expensive med that goes into it). My Doc got the machine given to me at no cost from the Pharmacy Representative. Whew. It took sooo long though that my body had built up resistance to TOBI and desperately needed Cayston.
So now I've been on Cayston for lil over a week and I DO FEEL A DIFFERENCE! I'm hoping this is the start of a great journey to get my lungs back up in the 60s. However, I know to be my healthiest I need to address the colon/ GI pain and issues too.
So in my last blog entry I talked about my horrible experience at the GI doctors. He not only insulted me and my mom, but insulted my CF Doc. He was a jerk. But I'm not letting this upset me. I see my CF Doc (Doc. B) on Monday to re-check my lung function, weight, and talk about GI probs, even look at starting a new clinical trial!
So I'm going to keep up my hard work and not worry too much about the GI problems for now. The prednisone Doc has me on his helping with that anyway. In fact, I'm starting to do more working out and exercise in order to MAKE SURE my lung function has the best chance of increasing and I feel my best!
I did my arms last night, 3 machines and did some bicycling too. I did slow bicycling while reading. It's not a lot, but I have to start small or I get overwhelmed and exhausted. It's like a lil rehab, but so far so good!
This is extremely hard for me because my lungs, muscle weakness (Cerebral palsy), and joint pain (arthritis). I posted 2 entries ago about how I was inspired by some great conversations and I'm asking everyone to keep me accountable too! And I mean it, I want to be my healthiest!
I've really been pushing CF Fundraising (through my 30th Birthday party) and also through the CF Walk I started in Princeton, IL. Why? Because I can tell as I get older it's harder to simpler tasks. I can tell how my health affects every aspect of my life. How I have to work twice as hard as I did in College to even keep my health at my baseline. I want to raise awareness and be around for a long time. I have goals & plans for my life and want anyone else born with CF to be able to live a full life too!
I can't wait to marry Andrew, hopefully become a mother via surrogacy or adoption someday, do Real Estate (at home, while maintaining health) and live a really full life. Full of health, love, and happiness. I fund raise to inspire myself, because of Laura ( & passed CF friends), and everyone who has CF in the world.
It's important to me, so thank you to everyone who is following my journey on here, twitter and my facebook page!
I've been blogging about all these separate things I have going on in my life. My lung function drop, the hospital stay, my stomach/ GI issues, the surgery, the Princeton IL CF walk, my fight with insurance for my Cayston medication/machine, and soooo much more.
So here's a bit of a catch up for everyone!
Let me start at the very beginning: read my CF history in this brief post here. Now let's skip ahead to the last 6 months.
From September 2014 - Feb 2015 I lost 3 CF friends ( it was really tough). In September my best friend with CF (from childhood & on) passed away from CF. I wrote a post about her journey, love for life, and how she was (& is) my inspiration to fund raise (read about Laura's Journey here). Then in October I got my
G-tube taken out/ fistula fixed and removed. YAY YAY YAY! The abdominal surgery was my 15th surgery, so I recovered pretty quickly. I'm beyond thrilled to say after 15 YEARS with a G-tube and needing to use it daily that I FINALLY can keep my weight up without it! Whoohoo! And I did a lot of clinical trials in the last 2 years, but in the last 6-9 months I lost a chunk of lung function and started having more Gastroenterology problems.<3 Meanwhile, I got engaged in Dec of 2014 and it was one of the best moments of my life, I'm sooo lucky to have Andrew in my life (read his adorable & perfect proposal here). <3
By mid January I was struggling with daily tasks and chores. I dropped down to 48% from my baseline of 58-60 (sometimes I get 64%). I could tell my breathing was worse and I couldn't stand to feel difference in my breathing. I was admitted into the Hospital for a week. Doc decided I could finish the rest of the 3 weeks at home. So then I came home with another round of 2 weeks worth of IVs and stayed on Prednisone. I was super busy at the time trying to get healthy, finish studying for my career Real Estate Exam, and planning my CF Walk & our wedding. Whew.
Doc said even though I didn't respond to IVs that I shouldn't be discouraged. I hadn't done my Cayston medication (an antibiotic nebulizer I need to keep my Pseudomonas bug at bay in my lungs). Doc had to keep me on Tobi constantly from October until I got my Cayston machine last week! WHOOHOO!
That's right last week I got the Cayston machine the insurance refused to pay for (even though they would pay for the more expensive med that goes into it). My Doc got the machine given to me at no cost from the Pharmacy Representative. Whew. It took sooo long though that my body had built up resistance to TOBI and desperately needed Cayston.
So now I've been on Cayston for lil over a week and I DO FEEL A DIFFERENCE! I'm hoping this is the start of a great journey to get my lungs back up in the 60s. However, I know to be my healthiest I need to address the colon/ GI pain and issues too.
So in my last blog entry I talked about my horrible experience at the GI doctors. He not only insulted me and my mom, but insulted my CF Doc. He was a jerk. But I'm not letting this upset me. I see my CF Doc (Doc. B) on Monday to re-check my lung function, weight, and talk about GI probs, even look at starting a new clinical trial!
So I'm going to keep up my hard work and not worry too much about the GI problems for now. The prednisone Doc has me on his helping with that anyway. In fact, I'm starting to do more working out and exercise in order to MAKE SURE my lung function has the best chance of increasing and I feel my best! I did my arms last night, 3 machines and did some bicycling too. I did slow bicycling while reading. It's not a lot, but I have to start small or I get overwhelmed and exhausted. It's like a lil rehab, but so far so good!
This is extremely hard for me because my lungs, muscle weakness (Cerebral palsy), and joint pain (arthritis). I posted 2 entries ago about how I was inspired by some great conversations and I'm asking everyone to keep me accountable too! And I mean it, I want to be my healthiest!
I've really been pushing CF Fundraising (through my 30th Birthday party) and also through the CF Walk I started in Princeton, IL. Why? Because I can tell as I get older it's harder to simpler tasks. I can tell how my health affects every aspect of my life. How I have to work twice as hard as I did in College to even keep my health at my baseline. I want to raise awareness and be around for a long time. I have goals & plans for my life and want anyone else born with CF to be able to live a full life too!
I can't wait to marry Andrew, hopefully become a mother via surrogacy or adoption someday, do Real Estate (at home, while maintaining health) and live a really full life. Full of health, love, and happiness. I fund raise to inspire myself, because of Laura ( & passed CF friends), and everyone who has CF in the world.
It's important to me, so thank you to everyone who is following my journey on here, twitter and my facebook page!
LOVE YOU ALL!
Hi Cheriz - this may be too late, but my daughter no longer uses Cayston - she has been put on Tobi podhaler instead. Anyway, I have a machine that you are more than welcome to if you would like it. I can probably mail it out tomorrow morning. I took a picture of it and can send it to you just to be sure that it's the correct one, but I don't know (or not sure if it's possible) how to attach a pic to a comment on your blog. I can send the pic to you thru email if you would like. My email is rnlnan1@comcast.net if you would like to email me then I can respond and attach the pic. Again, I'm sorry I'm late in offering but just realized we have one laying around that is not being used. Thanks, Lisa (mom of Abby - 19 yr old w/cf)
ReplyDeleteWhoops (Lisa again) just caught up on your blog and now see that you just received a free one through your doc. Sorry - I really am mad at myself for not realizing sooner that we had one - I may have been able to save you alot of stress.
ReplyDeleteThat's okay, thanks anyway though! :-) I appreciate the thought. AND I'm sooo glad to have one now! Whew. How does your daughter like the Tobi Podhaler?
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