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!


Friday, July 24, 2015

SummerTime

 Who Doesn't LOVE the Summer:

Summer is very much welcomed in our house! Andrew has more time off in the summer. I'm excited he graduates from college this December! Since the Fall of 2013 he has worked full-time while going to school full-time (35-45 hours at work & 12-15 credits per semester). This fall will be a little easier, he only has 2 classes & his Capstone Paper/project. However, he has been working on that this summer so he's ahead of the game. I've been enjoying spending more time with him this summer.


Last night we walked down to the lake and had a picnic dinner. Had to find a shady spot so I didn't get sunburnt, I burn fairly fast from daily antibiotics & fair skin. We got to use one of our wedding shower presents. My mom got us a lawn blanket that zips up, along with the shadowbox, and other items. We love to going to the band concerts & activities in the park. So the lawn blanket will get lots of use. We packed it all up in a picnic basket I got from an Aunt. We had slow roasted chicken (we had cooked all day), fresh sweet corn, tomatoes & cucumbers in vinegar, and some brownies.

Mom sent me home with the platter of brownies on Tuesday. She made them while I was visiting for my cousin's wedding. They are high calorie brownies. haha, as Andrew was plopping one in his mouth, I was like "heads up those are higher calorie." He was like "oh" haha. oh well, they are too good not to eat. Mom's Tip: Add Peanut Butter Powder to shakes & brownies for extra calories. Plus, it's tasty! I talked a lot about high calorie meals & tips in this post HERE!

Obviously, weight is an issue right now, since all those GI problems caused me to lose 10 lbs. My health isn't quite where it needs to be (as you may have read about in my last blog post). But, I'm on track to get it back.  Exercise is sooo important! I think I underestimated it in college. But I can see a BIG difference in my numbers & health when I work out. AND Summer is the perfect time to get involved outdoors, swimming, biking, jogging. I know my health always suffers slightly in the winter. I'm more of an outdoors person and really dislike working out in gyms.

That's one reason we choose to live where we do. We live in an apartment/Condo complex that has a pool and gym that we can use. This helps me out a lot. Its easy for me to use and not spend a lot of time driving to a local gym. We also live on the outskirts of our town, where there are trails that people can bike or walk.

I'm not super athletic, but I still enjoy walking, biking, etc. You don't need to be athletic to enjoy working out though. Its hard at first, but just take baby steps. I started out just walking around the block, now I'm doing 2 times that length and even added some bits of jogging throughout the walk. I shaved off a few minutes of my time.

Do what you need to in order to stay compliant with it. Working out with a friend always seemed to work for me. However, now that I live in a new town that is 1.5 hours away from everyone I know...I use an app on my phone to keep compliant. I have a work out app and a calorie counting app. I get soo busy sometimes I don't eat as much as I should. So now I keep track of my calories on this app and I make sure to hit 3,000 calories a day.

Whatever works for you, just stick with it! It may take time to see the results, so don't be discouraged. For example: in 2012 I went from walking 1 block to jog/walking a 5k. It took me from March- August to get there, so remember just keep trying!

 Enjoy this beautiful weather, look at that sky... anyone seen the Truman Show?? lol 

Keep you all posted on my CF appointment next Thursday, where Doc and I discuss Orkambi (check out the newest research and all about Orkambi here) :-)



Wednesday, July 22, 2015

2015 so far...

Gotta Keep Chugging:

2015 as year has been amazing, but also difficult at the same time. I love the achievements, happy memories, and celebrations that have or are happening. For example: I turned 30 years old in April. If you don't remember, check out the photo album from it on my CF Facebook page. We turned my birthday party into a Bowling CFF fundraisier, raising $400 for our Great Strides Walk! In June, I also hosted & organized Princeton's 2nd CF Walk (first official Great Strides Walk) and we raised over $22,000 for the CF Foundation. And of course, ANDREW & I ARE GETTING MARRIED in August!!!

As promised here are a few more photos from our wedding shower-


It was a beautiful shower, THANK YOU!

It has been an amazing year!!!!


But, it has its rough patches too. I've had lots of GastroIntestinal Issues, was on IV meds that I didn't respond too, was on steroids and over 11 nebulizers a day for a long time... And I only saw a slight increase in my health.. In fact, on top of that my arthritis has been flaring up, my liver enzyme levels have above normal levels for over 6 months straight... However, I've been off prednisone and the extra antibiotics for a few months... I'm hoping next week they will check my levels and they will be down.

I was super excited to start this year without a G-tube! After having it put in at 13 years old, I've been VERY grateful for it. But since 2013 I hadn't been using it, I didn't seem to need it anymore. On top of that I had other reasons I wanted it finally taken out. The area/ hole around it keep gettting raw, sore, and was bleeding. The surgeon said the hole was slowly getting bigger and my stomach acid would leak out.. It ruined a lot of clothes, but most of all was painful. Stomach acid getting into raw areas of skin. Owie. It would leak anything I drank, even food sometimes. So I was getting scared to drink or eat in public. So Doc understood it was time for it to go, espeically since I wasn't needing to use it. I took 9 months of not using it, but keeping it as a back up, to prove I didn't need it. Then on that Beautiful day, the surgeon took it out!

I had complications, it didn't heal up, I had developed a fistula. and long story short (read about my surgery & gtube HERE) I had a surgery in October to fix that. I got sick in November, then again in Jan -March off and on.. I lost a lot of weight when I was sick and worst of all I was having bad GI problems.

My GI doc put me on a very restrictive diet that did the trick, but then I dropped to 97 lbs and started basically feeling like I had no energy... So my CF doc said I had to slowly add things back. Well the problems came back slightly (but not nearly as bad). At this point I'm just trying to get my weight and lung function back up to where I want it.

I'm not sure if the GI problems, liver problems, and lower lung function are connected, but I'm sure they all affect each other. So as of now.... I'm not eating dairy, greasy, high fat, or buttery foods to help with GI. I'm trying not to take any Tylenol or extra over-the-counter meds and absolutely no alcohol (not a big deal to me, I don't really drink) to see if it helps my liver... I'm trying to eat over 3,000 calories a day (have a phone app for counting calories, I think people use it for weight loss, but eh it works...) to gain weight. I think it is a solid plan!!

AND I'm exercising more to bring up my lung function. You may remember me blogging about my lil rehab in this post HERE. I've been trying to keep up with it since April!!! Well here is an update...It's been a month, I still swim when Andrew has the day off and the pool is open, I do arm weights once a week at least , and I have been walking every day for almost a week.

Today I walked .67 of a mile in 9 mins. I'm not very fast, but I'm working up. The first walk I did was around the block and back... So eventually I hope to get back to where I was in 2012. Doing a 5K in 47 minutes. I took me 4 months to get to that point in 2012, so I'm hoping in can do it in 3 months this time!

I have to believe I was so healthy just 2.5 years ago.I refuse to let the negative thoughts cloud my mind. I'm 30 years old. I'm going to remain positive. I do not think I have the start of CF related liver disease (which happens when your liver ducts are blocked up with mucus). Yes, Lungs, liver, pancreas all over taken by mucus. yuck. . I will continue to believe its just from the meds I was on and my lower health currently.

It's going to take a while and it's going to be frustrating I'm sure. I can't expect to see results fast. Just gotta stay focused. next thursday is my next CF appointment!

Make sure to check out my facebook page: Cheriz: My Life with Cystic Fibrosis - I posted some CF Foundation news & an informative poster comparing CF lungs to other's lungs.