Thursday, July 30, 2015

On Top of The World

My Big Doc Appointment:

Okay, there is a lot to tell. So let's start with my working out & calorie counting. I know that sounds weird, but I forget to eat sometimes and like low calorie food. I don't care for greasy foods, sweets, or eating out. I'd rather have pickles, grapefruit, baked fish, and veggies at home.. Hence my problem. Low cal foods. So I count my calories. I have an app on my phone that helps me keep track and it subtracts what I have eaten from my goal. I set a goal at 3,000 a day. While I don't always make it to my goal, it sure beats the typical 800 calorie days I used to typically have...

I also have been walking (with some jogging bits here and there) every single day my legs permit me. So since the 22nd I have done this for all except 2 days (where my legs were too sore). Those were my resting days. The last 3 days I have done a whole mile and I keep shaving time off. Today's mile was 15 minutes!!!

Picture: As soon as we got home from Doc's I went out walking and just got back. Perfect! Shower, meds while blogging, eat dinner, and bed! 

AND GUESS WHAT! My work has paid off. My last doc appointment was one month ago. Since then I have gained 5 lbs. and now can proudly say I'm back to 103 lbs (from 98) and my lung function went up a couple points too, going from 50% to 52% - so whoohoo! I'm on the right track! Talk about feeling the difference. I knew I was headed the right way, since I stated working out and calorie counting, I have been coughing less, had more energy, and have been able to breathe deeper.

If you don't exercise.. please do it. It really does help. I started off just around the block. You don't have to be a marathoner, just getting around really helps. Small steps! You can do it!

SO MORE NEWS:  Doc said my liver is in a good range again. I'm at the high end of normal, but nothing to worry about. I was up high off and on during IVs and prednisone... Which can put strain on the liver and considering all my past liver problems as a baby/child, I'm soooo beyond happy to hear that. I had really started to freak out somewhat. But whew.

So lungs up, weight up, liver good, what about Orkambi you may be wondering.

Here's where is may be more complicated:

 Orkambi is amazing, it's the first step towards really curing CF. Its a great advancement as far as learning and research. It's helped CFers regain 2- 4% of their lung function back, and better than that... it's helped lower the rate of infections and hospitalizations. Of course, this is always a good thing as we grow resistant to some antibiotics from accumulated use over the years. It's quite a med! I'm sooo happy for those taking it.

Picture: Andrew and I chilling at Docs :-)

But I'm not going to start just yet. I know it sounds crazy, it could really help me right? Well, here's the thing. It has shown some problems with liver and eyesight from use (in people with those problems to begin with)...I have both, liver issues and eye issues... So is that worth it for me? Personally, no I don't think so... I've been discussing this with Andrew & my mom a lot. I've read a lot of the details about the results of the trials. This isn't some new antibiotic, a no big deal pill. It's like Spiderman type crazy stuff. Since I already have a crappy liver and right eye... why test it if I'm pretty healthy & stable?

If I didn't have pre-existing problems with my liver and my eyes, I'd be on board. But, my lung function is going up, I haven't been sick in a few months and on average don't usually need lots of antibiotics a year. I work really hard at my health and so far have been pretty lucky. Not everyone is as lucky with lung function. I have GI problems, arthritis problems, but overall I have been stable between 50-60% lung function.  I proved at this clinic that I still have the option of bettering my lung function, weight, and overall health on my own by working out and eating right.

So I want to exhaust those options first. If I drop in function, if I feel I need orkambi, or more data is gathered about my specific concerns, then I'll certainty jump on board. I understand why people are taking it and I'm sooo happy for them! But I'm not quite there and I want to wait for a year and see what else comes to market. Kalydeco had a much higher lung function improvement & lower side effects, so I'd probably would have started it right away. But considering I'm unlucky in liver and eye probles... ehhhh...

I'm no expert by any means and overall I'm very happy about Orkambi, I'm just not sure its the next step for me yet. Besides if I or Doc change our minds, we have it available to us as an option. And yes, Doc agreed with all my concerns and agrees 100%.  I love my Doc!

Feel free to rejoice in my numbers, appointment, and agree or disagree with my orkambi choice. But I feel it was right for me and I feel on top of the world that I went up in everything AND that I'm doing so well I even HAVE the OPTION to say I don't need Orkambi yet. How lucky am I!!! I will keep you posted on Facebook HERE!

Oh and I have more big news to announce soon too...stay tuned!


  1. way to go! I'm holding off of orkambi for similar reasons.... and this is just the tip of the iceberg. just imagine what will be coming down the line in the next few years!

    1. Yeah, It's such an exciting time for research for CF. Orkambi is the start of something big and I can't wait to see what the next few years bring! and thanks, hope you are doing well!