Monday, March 9, 2015

Truth in the Numbers (Understanding My Fears)

In My Future Will I Struggle to Breathe:

Doc always says feeling great is more important than numbers. However, he knows I tend to get hung up on them. I mean the numbers are measurements, well essentially of my life (quality & years). They hold more power than they should (in my mind). Those numbers determine whether we need supplemental oxygen at night or during the day. A lot of people with CF (who I still call CFers, even though it's not PC) need
oxygen full time until they are considered (or denied) for a Double Lung Transplant.

CFers: Sorry, but it's sooo much shorter than "people with CF" and I (personally) do identify mainly as a CFer. Its does affect almost every aspect of my life, but I don't let it solely define who I am, I promise.

Picture Right:  Me at Doc's today, before Doc came in.

I guess I've been a little freaked out lately. I have never NOT RESPONDED to IVs before. (Read about my 6 month struggle/ updated post HERE). My body usually rebounds so fast it is crazy, so when I wasn't getting better after the hospital  and 3 weeks of IVs... It was deflating and disappointing. Laura was denied 2 times for new lungs and I watched her struggle to breathe over two years until she passed in September. And that scared the Sh*t out of me (sorry for the cuss word).  Plus, I watched as Alyssa and Cloey both rejected their new lungs within a YEAR of receiving them. So scary to think I could be in those shoes someday, and so sad to watch people I love struggle with it.

I never want to HAVE TO HAVE a Transplant ( If do need one... down the road, I will accept it), BUT I'm going to work my hardest to not end up in that position. I want to be 60 yrs old, heck 70 with my own lungs. I also want to try my hardest not to end up on oxygen. I'm only 30, I want to start a family with Andrew someday (via surrogacy or adoption), so when my I wasn't responding to the meds, I started think over everything really hard. Its tough knowing we don't have all the control. We can work and work, but  in the end just ONE virus or infection can derail our health. Each time I get sick, it's like starting over to get back up to those high lung function numbers (a whopping 55%) and I have to hope the fact they are low isn't due to more permanent damage in my lungs (from scarring, etc).

Poor Andrew, I've been a bit of a mess the last few months, thanks to my health blip. But, I also want to say my health Blip is nothing compared to those waiting for lungs, being denied lungs, or on oxygen waiting to get sicker so they can even be listed in the first place... (thanks to the small time frame window we have). UGH.

So I don't mean to complain or scare anyone, more I want to explain what it's like to know this could one day be me struggling to breathe, like Laura did. And that's hard to swallow when you are currently about to get married, want to start a career, and a family. My life is so amazing right now and It terrifies my to think of what can happen. However, we can't live our lives in fear, so I don't let it overwhelm me (usually). But, when I get sick or when I don't respond medically like I should on steroids or IVs I turn into a bit of a worry wart.

Okay, enough making you wait to hear the news about my appointment. Overall, weight was the same (101 lbs) and I'm good with that. I mean, with all the GI issues I've been having, I'm glad to not have lost weight. Doc told me to stick with the referral GI he gave me (they have worked with CFers with Liver & Colon issues), I ended up getting stuck with a different doc in the same practice. Clearly, Doc isn't going to let that jerk of a GI be part of my future health. So I'm making a new appointment with the original GI that Doc suggested (read about the BAD GI DOC here). I'm still gonna work on gaining weight and muscle (by keeping to working out). Tomorrow, Andrew & I are going to go to the gym again too (yay, sticking to it). I'm ready to get training for those 5Ks I'm doing this summer.

I'll tell you more about the 5Ks in another post, let me explain my lung function and what all Doc had to say:

YAY! My numbers went up! In fact, I was shocked at how low they previously were. Doc didn't tell me my numbers last Clinic and I figured he had a good reason. He was right (and I didn't even ask). I would have flipped out. I was at 41% that's the lowest I have been in YEARS! BUT, today I was back up to 56% whoohoo! 55-58% is my normal range. And Doc said if I g keep gaining weight, working out and doing my meds 100% I could get up to 60%. Talk about motivation!

After my appointment we went to a restaurant down the street called YardHouse. I love it there, so delicious and everything is so fresh! I got chicken tortilla soup & half a turkey melt. My soup had whole pieces of chicken, bacon, and avocado slices in it. The sandwich had a thick carving of turkey with fontina and swiss cheese melted on top. Mom got a beautiful salad and I even ordered myself a small creme brulee with Bananas Foster on it. Oh my was it yummy. I'm counting down the days to my next appointment, just for that food!!!!!

 We stopped at Costco and got a big supply of my probiotics (which if you didn't know you get 20 extra pills for free at Costco compared to WalMart price), someone let me in on that tip! So now I have 2 months worth for so much cheaper! I found a  Costco brand ensure type drink for super cheap too. It 250 calories, non-lactose and gluten free. I'm hoping it tastes pretty good. You get 30 drinks for $23, so that will help me with high calorie snacking and pre-workout/ post workout calories.   One sec.... (drinking one) Yeah it tastes like an ensure type drink, not too bad. I can chug one for the calories. Score!

I'm just sooooo relieved my numbers went back up, It's scary having no clue if they will go up or down. Whether you're gonna fully recover or there is more permanent damage. I couldn't be anymore thrilled and excited to keep up with my compliance. I've been 100% since January, considering I do 11 nebulizers a day, I'd say that's pretty good!  Here is the chart I made with my numbers at each clinic back to 2010 when I was around 38%. I switched to Doctor B in late 2010, early 2011 (see the impact my doc had alone). Also you can see over the last year I just kept dropping, it was sooo discouraging, but look at the beautiful upward trend. REBOUND!




I'm hoping with my new found excitement and motivation to keep up this trend, it will just get better & better! Here's shooting for 110 lbs (I'm 101 lbs right now) AND 60% lung function down the road!

Thank you to my family & friends for making mid-day breaks at my apartment to do meds when we are shopping, etc. With everyone helping me be complaint, this will go sooo smoothly! So Hip Hip Hooray!

Oh and there may be more good news coming in my next blog! Thanks to everyone for following my struggles & journey on the my Facebook Page : Cheriz: My Life with Cystic Fibrosis - that's where I post all the blog entries, cool news, and keep everyone updated. Make sure to "like" it to follow along. Thanks and Much Love!



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