Monday, July 28, 2014

Welcome to the 60s, Oh, Oh, Oh, Ohhhhh...

Back to the 60s:

Nope, I'm not in Hairspray again (I was in it in 2012- it was the most amazing theatre experience I've ever had...).  I seriously owe a lot to that cast, been two years (3 productions later) and still no experience can compare. Don't get me wrong all the my theatre productions (and casts) have been amazing, but Hairspray Cast went above and beyond to not just to welcome me, but to help me out. Read the two blogs I wrote all about that show and what they did for me right Here and  Here, both blog entries describe the expereience and different aspects! Or you cand read all about theatre and the roller coaster it has been for me healthwise, by clicking the "theatre" label on the left hand side.

If I'm not performing Hairspray again, then why do I have the song "Welcome to the 60s" in my head then.... Well firstly, it's a fabulous song If you haven't heard it, you must listen :

But the real and even MORE EXCITING reason that the song is in my head is because:

My lung function is at 60% ( back to the 60s)... Let me explain a little more in detail.

I was at 64% lung function about a year ago (but at that time I was in an isolation room in the hospital and getting 2 antibiotics via IV and 1 steriod, plus on my regular antibiotic (via nebulizer) too. So it was no wonder with no outside germs, around the clock care, and extra meds I was in the 60s. But while not in the hospital I struggle to be above 48-53%

But now??? I'm at home, only doing my regular nebs and meds, not doing any antibiotic nebulizers (No Tobi for the last month ish) due to Insurance reasons... So what can account for this increase. My weight has gone down a bit (due to my stomach tube hole leaking/healing very very slowly)... So it can't be thanks to my weight increasing.... What else could help me jump 5% in a month (when I'm lucky to get 2% over a month or two)???.... This is big for me.. Maybe it was a fluke.. Who knows, crazier things have happened (especially to me). BUT...

I'm hoping it was due to the clinical trial I'm on... I'm thinking perhaps I'm getting the trial drug and not placebo. I had the first cyle/administration of the drug 30 days ago exactly.. It's the only new/different thing I can think of to help contribute to this increase in lung function. So fingers crossed that is it, because I still have 4 months left on the trial. So in theory, this may be able to bring it up even more. I dont want my hopes to get too high, but perhaps I can have a little hope. I know I can't expect those results every month, but I'm hoping with my increase in exercise I'm going to be able to contribute (after moving to my new place that has a gym!) that I can get it to the high 60s (like 68 if lucky) by November. Its hasn't been past 64% since I was a kid.  Oh and as far as packing goes...

Haha, well we are taking a lot of french fries with us. Around 30 boxes of fries. Haha, okay not really. We are just using french frie boxes that Andrew can get from work. It just looks funny with 30 some "french fries" boxes lying all around the apartment. We move on Friday, but will be gone for two days. So really we only have today and tomorrow to finish up packing. We still have a ways to go, but it should be done and ready to go by moving day. Which is FRIDAY MORNING! yay!

And Doc got my Tobi approved by the insurance, so they won't be refusing to pay for that anymore. Now to finish getting my new vest to go through. Which I don't think will be as hard! I can't believe all the good news!

Tobi approved, lung function up 5%, moving to better area (for me)- and my new place has a gym, pool, and walking path around a lake right outside my back door. So I can be more active and keep this positive trend going.

So I will keep you all updated. And keep Laura in your thoughts. Monday is the big day with her final tests for evaluation for lung transplant. It doesn't seem fair for me to get such great news, while my best friend struggles to beat this CF ( but hopefully I can share my good fortune- in spirit) and she will receive an acceptance to join the wait list in just a weeks! What a long a journey, so proud of her for continuing to fight.

Fight. Fight.Fight. It's what we do!

Monday, July 21, 2014

Healing and Fighting

My Life & All the Medical Drama:

So much has been happening, but with my packing for the big move to Dekalb Area I haven't really been able to blog. So first of all. The walk has received a few more checks.. Our total is above $13,300. But we are expecting to pull in around $13,500! I'm so proud of the community and support we received (read about the CF Walk in my hometown here!)

I can't wait to be done packing, for some reason when I'm packing up the apartment it just gets more messy box by box. Also I'm suprised we own over 300 movies! I had no idea, until I filled up 3 boxes with them. Guess it makes sense, Andrew and I are both movie fans. One reason why I really enjoyed working at Family Video.  Why is that past tense? Worked... well...

Oh let the fun begin... I'm still healing from my stomach tube being taken out! If you missed that read about the relationship I've had with my stomach tube here and then read about how doc surprised me when he took my tube out here! Which is why it is taking FOR-EV-ER (Sandlot style) for it to heal. I understand that putting me under is an unnecessary risk when it can heal on its own. It is healing on its own, but taking a really long time. I'm okay with being patient ( I guess, If I need to be), but ask anyone close to me...patience is what I struggle with the most. Well at least it isn't infected and I've had no serious side effects, so this is obviously the better option. Just it's trying my patience.. I can't work until it is healed (because it still leaks and I need gauze to be changed, plus it stings while healing..). I don't want to wait another month or two to go back to work and I'm starting to take classes this fall, so that will definetly make life a little more difficult. I think I just have to wait for it to heal more and stops leaking before I go back to work. Until then I will just focus on other projects and will take the two classes a week (starting next month) and WAIT... Oh, healing takes forever, but at least I didn't have surgery. I don't always have the easiest time waking up from surgery or even recovering. So whew...just tick tock tick tock.

Just gotta keep reminding myself how nice it will be when its healed and I can wear a bikini with no worries!  At least while its healing I can still go out and do stuff (with it covered). Saturday, Andrew and I got to go to a White Sox Game and spend the day together in Chicago. He works so much 50+ hours & full time student, we never get a chance to have a day together, so it was amazing! We had lunch at Viaggio's (had the best calamari EVER), then I put on my white sox shirt Andrew bought me a few yrs back (we've bought tickets twice and never have gone, due to me ending up in the hospital or having surgery...). SO this time we got to and I of course ate tons : hot dog, nachos, cotton candy.

Best yet: the Six won!

I didn't think I'd enjoy a baseball game that much, but I loved it and I can't wait to go again...Which of course thrills Andrews (since he is huge baseball fan).

Along with all the healing, I've had to fight a lot lately too...

No, not fight with Andrew, family or friends.

Fight with the same people I usuallly do... my insurance.

Lately, I've had ots of problems with my insurance covering my medications. Which is frustrating, because I never had problems in the past. Now, they are trying any excuse to get me to not fill them or refusing to pay for them. All my meds run out at different times and the insurance won't let me do auto-refill...Meaning I have to keep on top of it (which is okay, but annoying). It's tough to remember, when you take over 50 pills a days and 20 different scripts run out at different times.. The insurnace bascially is hoping I forget to refill them. sneaky, sneaky insurance...

Also, they keep switching what pharmacy to use. I'm up to using 4 pharmacies now (keeping track of 4, and having to battle with all of them for different meds is exhausting). I have to fight them and have doc appeal the insurance denials for any med that gets denied (which is any med that costs over $500 pretty much)...Although the insurance always has a "reason" : 1. The medication is cheaper somewhere else, new pharmacy is added 2. Why do you need TOBI, just take a cipro pill... hahaha (oh their substitutes are dumb) 3. There is no proof you need both CAYSTON and TOBI, pick one   I'm sure there have been
others, but those are their favorites! HAHA. Doc just repeals until the insurance breaks down, but in the mean time it sucks for me not to have them.

I'm fighting for TOBI right now, luckily I'm doing okay still. But this whole med tango needs to end now! Don't they realize by jeopardizing my health, I'll wind up in the hospital (costing them way more than the monthly price tag for tobi or cayston ($6,000). AND down the road if it keeps up, they are just setting themselves up for paying for a new set of lungs ($600,000) so they are really not doing the math right...

Speaking of lung transplants:
Here is an update on Laura! If you don't know about the fight my best friend is going through, read her story. All 4 blogs I have written about her are right here, just click to read all about her journey to get new lungs!) As you read being evaluated is a long process. I first found out Laura was going to need new lungs in 2012! At that point she wasn't low enough in lung function to be evaluated, but they knew that would be the result. Since then she has basically had to try to maintain her 35% lung function ( today is currently 24%) and hope when she dropped low enough, she'd be approved before she dropped too low (and are considered to ill for TX-transplant). She has been fighting ever since. In and out of the hospital, surgeries, infections, IVs, etc. But she continues to fight. She was told in late 2013 she could be evaluated finally. And if approved she'd be listed. Each center has their own reasons for accepting or denying. She went to a Center in Florida first, and was denied (due to a list of secondary CF problems she has...). Joe (her husband) and I encouraged her to try Duke in NC. They accept more severe patients and are one of the few centers in the whole nation to due transplants even when CF patients have Cepacia B. Laura doesn't have Cepacia B, but she has other issues. Still even with those, I believe Duke will see the fight in her to live! And I'm hoping when she has her follow-up and final evaluation tests on August 4th, she will recevie a acceptance shortly after. All this waiting is horrible. I can't imagine. If doc told me I'd need new lungs (I was on oxygen full time) and I had to wait for them to drop another 10% before I could even be tested for new lungs. Then after waiting a few months going through testing, I have to drive to a new center ( in a whole different state -about 8 hours away from home) for testing over the span of a couple months again... From the start of being told she needed lungs to the day she finds out if accepted it will have been 2.5 years!!!!  So keep thinking happy thoughts laura, soon you will hear your final news!!! And everyone else who is reading, please think about this. When she gets accepted (yep, when, I refuse to believe a denial will happen) she will need help! Laura's family lives in California and Illinois. Her and Joe got married summer of 2013 (live in FL), both have many medical bills! Laura's insurance will pay for the lungs, but she has to travel to and from doc appointments, will need extra food, rehab, meds, etc. Also, she will be living off her $700 monthly income from ssi, because that is the highest amount allowed. With her not able to work, they will need help to get through this!

I know if it were me, my entire family, friends, community would support me. I hope you think of her as you would me. She means as much to me, as I do to you. I will keep you all updated and let you know as soon as I do. She has the final appt on August 4th and then just wait a couple weeks for the answer. She is also updating people via her GoFund Me page (thank you to everyone who donated to it in the fall). I did notice that over $280 was raised among my family & friends on her page last fall! Please know Laura and I both thank all the family and friends that donated. We love you!

Just click the picture to the right to donate or check out her GoFundMe page!

Also, Below is the video I first made for her in 2012 when we realized she gonna have to fight through this journey! I'll keep you all posted on my stomach tube, insurance problems, and Laura's fight! Thanks for reading :-)

Saturday, July 12, 2014

Cheriz the Lab Rat & the Unpleasantries...

I'm a Lab Rat!

Yep, that's right I started a new clinical trial yesterday! I did one clinical trial from November of 2013 until last month and now I'm starting another one! I love everything about it (scroll down to read last weeks' post about why I do clinical trials). I was really excited to start this trial, its a new drug for me. My last trial consisted of me just doing meds/stuff I already do, this time I really felt more like a lab rat.

Now, don't get me wrong, we aren't quite lab rats, these meds have gone through previous testing. Not that it matters much to me, I'd do it anyway. I've always been a little obsessed with experiments. Let's face it I was a Psychology Major and the classes I excelled at most were Statistical Reserach and Research Method classes, so yes.... you may call me a nerd. But I loved proving the importance of research through statistical analysis. I actually enjoy being involved in the clinical trials and reading the published results.

So here I am chilling in the Doc's office.

After the appointment, I came home and chilled. I did meds, packed some for the big MOVE (read about it HERE). Then Andrew and I had some fried Cod for dinner. It was delicious, I really love fish. YUM!!!

However, here come the unpleasantries..

I had a coughing attack right after dinner and ended up throwing up my entire dinner. Ew, why am I telling you this? Its gross right... Well its a part of my life.  Laying down the wrong way can cause me to cough. Coughing leads to throwing up quite often. I stopped drinking milk, cause I found that made it worse. Since cutting milk out I've cut down how much I throw up. However, coughing attacks sometimes come out of nowhere... and I can't control it. Also, in the winter or when its cold out that can cause some issues too! I cough more when my lungs breathe in the cold air and if I have recently eaten, uh oh, it just happens. I throw up my meals, life is always exciting with me. But nobody wants to throw up all the time, so how do I try to avoid this...

1. I carry a bottle of water or gatorade with me (taking sips while coughing to try suppress it)

note: normally I would never suppress my cough. BUT, if it means keeping my high calorie meal down, then suppress

2. I don't go out in the cold until my food has settled for 20 minutes (similar to swimming after

and lastly...

3. I watch my breathing while I'm eating ( I noticed I'm sooo thristy I tend to forget to breathe while glugging down my whole drink). I also try not to drink a lot until after I have eaten anymore (just to make sure I don't fill up on my drink). This also helps me gain wight (I have lots of other weight gain tips & recipes Here!) and I love FOOD, but don't love having it come back up. So for the most part these three simple tricks have helped (along with cutting out a lot of dairy)!

I know lots of CFers have issues with food, lots of us are diagnosed with IBS, Gastroparesis, sometimes even Crohn's or just have lots of intestinal blockages and surgeries (like me). Our stomachs are sometimes more trouble than our lungs and this is overlooked a lot. Most people think this is a "lung disease" but really it affects much more than that! My intestinal operations were very serious and the scariest moments (those moments when your not sure if you will be okay or not...). My intestines scare me way more than my lungs! So please understand we have other issues besides lung problems. For example here is a pin I found that helps illustrate this point.

Hope this helps you understand a little bit more!

 * And remember never expect me to eat a quick dinner and walk to the car from the restuarant in the winter, or uh oh spaghettios... Just ask my Aunts... They can vouch it ain't pleasant!

OH, and some GREAT NEWS: Some more checks have been made out the CF Foundation on behalf of our walk, so our total is even a little higher. I'll keep updating the amount! Check back next week for a new total! And if you haven't read about the Walk--- check out the results Right Here!