Monday, November 24, 2014

Doc Appointment Today

Clincal Trial Appt Outcome:

As you may have read on my Facebook or My Twitter I was a little nervous that I'd end up on IVs today. I was also very nervous about driving in this CrAzy weather. Luckily, Andrew was able to drive and after the appointment we stopped for Subway real quick. I mean $2 subs who can say no?!  And a subway cookie- heck yeah!

The appointment today was my final appointment for the KB001-A Trial I was doing, if you want to read the basics about the trial (posted on CFF) then click HERE! I didn't mind have the 2 hour IV once a month (for roughly 6 months), I'm just excited to read the results and that I got to be 1 of the 180 particpants in the nation that got to be involved!

Right before that psuedomonas antibody trial I did a trial that helped proved the effectiveness of switching Cayston (inhaled aztreonam) & Tobi every other month. That trial was super easy in the sense that I have already been doing that for years. If you want to read the details on that study it is right HERE!Of course, insurance & other reasons need data to back up the reasons that Docs are rotating these drugs. That trial had an electronic diary I had to fill out every night between 6pm and midnight. I had to keep all the used/empty vials too. That was the hardest part. Remembering the journal (I only missed one night in the 6 months) and I'm so used to throwing the empty vials in the recycling that half the time we'd have to dig throgh the whole bag and pick them back out.

So the KB001-A Trial I finished today started 3 weeks after my Cayston/Tobi (Gillead Trial) ended. So pretty much I've been doing trials since November 2013 non-stop. AND the most exciting part is I'm enrolling in another study and start the screening process next Wednesday! This tiral is 6 months. So November 2013- May 2015 I will have done three trials back to back. This study is to looking to a new med/ way to thin the mucus & help it break up! Around 400 particpants will be entered into this study & my Doc's office is accepting 5- 10 people. So I'm super excited to be invovled. The basic info on the trial for Inhaled Mannitol is right HERE for you to read!

Picture: Us waiting for our Appt!

So I'm excited to get that study started! AND now for what you may be wondering about... my numbers!

Well, my first breathing test wasn't so great, but I have to do at least 3 for the trial. And each time it got better and my numbers got higher. Finally, I got around 50% 3 times in a row. So I'm only down 1% from last clinic. That nots too bad and my weight is 100.7 lbs. Its increasing super slowly, but at least it is increasing. I hope this holiday season helps that continue to increase. I explained to Doc about my wheezing, extra coughing, and tightness in my lungs. He listened to my lungs and with my test being almost the same as last time, he said we'd keep an eye on it. It probably is the weather irritating my lungs, I also have really bad asthma component to my CF and my rescue inhaler has been out for over 2 weeks. The pharmacy was having some issues, but Doc is getting that resolved. And since I go back next week for the Screening for the trial (and I go for Clinic every month), He'll be able to keep an eye on me.

I love that he allows me to try to increase the number on my own, instead of always jumping to IVs or oral pills like my old Doc. This might sound crazy, but it is smart for my case. I'm allergic to Bactrum, Keflex, Levoquin, and Ciprofloxacin. This means every single antibiotic that targets psuedomonas aeruginosa (which I have cultured every sputum test since I was a child ) I can't have. The Cipro allergy developed over the years and got bad in 2013-2014. So, Doc thinks my body is becoming resistant/fighting them and we don't want to exhaust all options. Plus, my body bounces back fast (luckily) So I use other methods first. Sometimes a low dose of prednisone or extra therapies. Ususally it works, but his rule of thumb is under 49% usually means 2 weeks on IVs for a tune up to jump the number back up. For example, in 2013, I  went from 48% to 64% in one week on IVs. So as much as I'd love to just have that 64% again. It would slowly decrease again, and constantly going on IVs isn't going to be the best option. So make those numbers last and stay up as long as possible to put off IVS until I have bad infection or big drop in numbers. He's very smart and thinks long term. I loved hearing him tell me about his 70 year old patients (he enver breaks hippa and says personal stuff) etc. Just that basically how old some are getting and how well I can continue to do if I work at it. I love how much he loves that we (his patients) are succeeding.

So my weight is slightly up, lungs 1% down, Asthma issues, but overall my lungs are still okay and Doc thinks I can get my numbers up without Antibiotics! So what I thought would be a bad clinic, its was overall pretty decent! Whew... you just never know.

Besides all those antibiotics I'm allergic to...Did you know I have life-threatening allergy? Besides my immediate family how many people know what it is? I've been looking into medical alert bracelets and for a good reason too. But, I'll save that story for next time!

Friday, November 21, 2014

The Way Weight Works

Phantom Limb, I Mean Phantom Tube:

Well, you heard right... I'm back to having trouble gaining weight. It's because the amount I need to gain is 8 lbs. Which can take me a couple months. It's a slow process, but as long as Doc. B sees progress he will be happy. And happy Doc is what I'm aiming for, considering I promised him I'd put a tube down my nose/throat into my stomach every night if I have weight troubles again in the future.

I'm at a really funny & ironic point in my life with weight. The truth is I finally figured out how to keep my weight up without using the G-tube (stomach tube) I had. I didn't use the tube for over a year to prove I didn't need it. I had many reasons I wanted it out.

Here is my list I gave the doc:
1. It leaks around the tube & Surgeon said I'd have to just put a bigger tube in.
2. The leaking causes the stomach acid to eat my skin, leaving in sore and raw.
3. I have to wear gauze and bandaids everyday & it hurts to have them on my raw skin
4. It's expensive to keep replacing medical tape, bandaids, gauze & I have a limited salary
5. The amount of stomach aches has increased due to air gettting in through the gap around the tube
6. I don't use it & I don't want to have to deal with it EVERYDAY just to have it as a back up.
7. I have Andrew now, who makes me high cal meals, drinks, and keeps me on track weight wise
8. I don't want it when I'm married and have kids, it's hard to pick kids up, etc.

Here was Doc's Response:
1. If Andrew signs a paper stating he'll stay with me for forever & do his part.. (he was kidding though)
2. He understood I already had it for 15 years and wanted to have one less thing to deal with
3. I don't use it and have kept me weight up, proved my point
4. I had to promise to put a tube down my nose in if I need to get weight up
5. I agreed to his conditions.


With the Tube (ready for Feeding)                                  Post Tube- look & my scar looks great!



    I'll discuss my scars you see here in a future post!

So the ironic part is I got it out because it was really leaking, making my skin very raw, was stinging constantly, and I couldn't deal with it. The surgeon said there was no way to fix it, due to scar tissue. So Doc & I both were pleased with the agreement I made & thought it would be this amazing "Happy Ending" to my life with a G-tube!

However... that wasn't how it turned out. Read my post about my Stomach Tube removal/ Journey to fully understand what happened. Overall, I find it a lil ironic and funny that because of all the complications after having it removed I am back down in weight and working really hard to get it back up to 108 lbs. But 8 lbs is a way to go & will take time. I was high in weight when it first came out and was hoping it would heal how it should & I'd get to enjoy my high weight, without the stress of gaining weight.

But now, I just want my weight back. Part of me is like "dang it, I wish I had my tube". I could put this weight on in no time at all with it. But, I realize it was causing too many issues  & I would be miserable with it. But I can't help but sort of miss it. It is EXCITING to feel (for lack of a better word) "more normal" though.

And I completely stand behind my decision & understand why I needed to take it out. However, I can't help but sometimes wonder if what I did was right? I mean, I'm under weight again. Sure, I'd have raw, bleeding, stinging skin around the tube... But I could suck it up, right?  I mean I did for little over a year. I had those issues the whole year I was proving to Doc I didn't need it. He was right to make sure & test me, but even now I still wonder if I should have waited, or gained even more. But, I can't go back in the past & I don't really want to change my decision.

It's weird not having it too sometimes. Have you ever heard of Phantom Limb? Well, I have Phantom Tube. That's right when getting dressed sometimes I still reach for gauze or band-aids. I still sit with my hand resting over my "tube" spot (Sarah noticed that the other day). But the worst is when I'm eating and I feel the food leaking out of my tube hole, freak out and put a napkin under my shirt. Then I realize it was all in my mind. So yep, even though the hole is sewn shut & looks beautiful (for a 2 inch scar)! Thanks Doc. C (my surgeon) you rock! However, even though I still can feel it and forget it is gone, it makes sense. My G-tube has been a part of me since I was 13 years old. That's 16 years!!!!! It's been part of my life more than not and honestly I can't remember what it was like not having it. I guess my brain sort of thinks it was a part of me, like a limb. It makes sense my brain needs time to figure out its gone, I mean its a huge change. Everything changes, from what I eat, to how much I eat, to what I can wear, to how I get ready in the morning, to how I sit, or sleep, or dance, work-out, hug, anything & everything. It's just weird and I need time to adjust.

That all being said, I'm so proud that I accomplished this! I never truely believed I would ever get my tube out. As my friend, Dan said " I kinda thought that was a for life thing" and I honestly always thought so too! But as I got older, didn't have as much to worry about. After my undergrad years were done my schooling got easier, etc. Plus, add in that I have amazing partner here to help, I did it! I can't wait to wear a bikini next year! Or not worry about my tube leaking on my clothes and ruinning them! I love hugging people without fear, I love being able to pick up and rest my babysitting kids on my hips/stomach area!!! It's sooo amazing! The small things in life really make a difference.

I have a plan to gain weight. I'm eating a certain amount of calories (3,000) everyday & trying to drink high cal coffees & hot chocolates (with ensure powder, protein powder, etc). One trick I do in the mornings if I'm not hungry enough for a breakfast is that I'll make a high cal Orange smoothie (that reminds me of an Orange Julius). I use Whole milk, Ice cream, Orange juice, Vanilla Ensure powder, and a lil Heavy Cream usually. If you want some other tips or recipes check out this post: Weight Gain Tips & Recipies. I'm also lifting weights (a lil), just to add a lil muscle too! I'm not going to be able to get all 8 lbs back by Monday (which is my next doc appt). But my goal is New Years!

Wish me Luck & if you don't know what to get me for Christmas? How about a High Calories snacks, brownies or my favorite cookies  (chewy Scotchies) ;-)








Saturday, November 15, 2014

Career Found

A Flexible Job That Helps Me Maintain My Health:

A few weeks ago I wrote a blog post all about why I pursued Real Estate and why going back to Grad School isn't an option for me anymore. If you don't remember reading about my blue print sidewalk chalk drawings or my childhood design portfolio, make sure you Read It RIGHT HERE! 

After reading that & understanding why I'm pursuing Real Estate and how it will help my Cystic Fibrosis as well. I'd like to announce my GOOD NEWS! I got an A on my Real Estate Final!!!! 

Finally, I feel like I'm turning my life long hobby into a career: see pic right.  That doesn't include my magazines and yep, I have the fallingwater Lego set (but its not finished yet).

Got an A on the final...that sounds good right, well let me explain. I'm not done yet. I have another 5 week real estate class (where its more hands on & case studies). Then after passing that smaller final exam, I can register & pay to take the state licensing exam! Of course once (or if) I pass the state licensing exam I will be ready to ACTUALLY start my career, but first I will have to figure out which agency or which broker I want to sponsor me.

It will be difficult for me to find clients (since Real Estate careers are largely built on references & referrals), since I live in an area where I don't know a single person. However, I'm sure once I start working with people, it will get easier. I'm eventually hoping to create my own agency and work completely out of my house. So I have two more years of classes to take (for managing broker), etc. So there is still a long way to go and much more work ahead of me. But, I finally feel like I'm on the right track!

The good thing about these future classes are it's only one class per semester two evenings a week! I can keep up with those, doing real estate, and my health.

I'm beyond relieved that not only will I LOVE my career, hopefully (fingers crossed) will be good at my career, but that my career will allow me the time and flexibility I need to succeed healthwise!

By working out of my house I can still eat whenever I want or need to (keep my weight up), and do all my therapies (9  a day)! Imagine never coming home late from working and having to skip a med or stay up til 2am doing therapies. I used to end up doing that when I worked for Family Video. I loved all my past jobs, but this future career will be exactly what I need.

I'm almost 30 years old and it takes more work to keep my health up now! I know plenty of CFers keep their health up and work out of the house. But with my 3 sets of therapies I find it hard. Each case of CF is different. Plus, I can't work (or barely move) whenver my arthritis is flared up, I have really bad intestine issues (which happen all the time). And I really feel a difference if I don't sleep enough, miss a nebulizer treatment (therapy), or forget to take my morning meds! And that happens when I'm on-the-go all the time. Being at home will make it a little easier to keep my lung function and weight up! Since I'm 30, not gonna lie it takes more effort. I mean the life expectancy for us is 37...And I plan on being around a lot more than 7 years! Working from my home is something I also enjoy. I love blogging, doing PR, advertising, etc. So I enjoy working off the computer and being at my house. I can do laundry or dishes while thinking about my projects I'm currently working on. This will definetly be how I run my house, Family (I hope), & career in the future!

I just can't wait to finish the 5 week course and take the state licensing exam! Thank you to everyone who has supported this decision and pushed me to reach my goals! Especially, my family, boyfriend, friends (especially samantha), and everyone else! I'm so excited! My goal is to be licensed by New Years, so I can start working right away in 2015!

Does your work fit your lifestyle (for me my CF)???  Do you work at home and do you like it?