Retail Therapy

One perk of two hour treatments twice a day is lots of "me time". Another far superior perk is plenty of time to shop online! You all know that I tend to blog and treatment but during the holidays I knock out almost all of my gift list while on my nebulizer and vest. Glamorous, huh?

This month just happens to be a Tobi month. Usually I would whine and whine and whine about this but I'm actually secretly rejoicing in the fact that my treatments are significantly longer this December. No one can bug you or demand your attention when you're busy saving your own life, leaving me two solid hours of power searching, shopping, and shipping. Who can argue with that? I'll still whine about Tobi a little. Can't let that antibiotic think I welcome it's nastiness. I do appreciate it's effectiveness, though.

Happy holiday shopping to all of my sweet family and friends!

When Good Blogs Go Bad...

Things get moved around, apparently. There is supposed to be a column with the months and dates of all my little postings right over thataway -->. As you can see, it is not there; instead, said cutesy column with important stuff is down at the very bottom of this page. Why, you may ask, has it relocated to such a ridiculous place? To annoy me, or punish me for neglecting it these past few months. Either way, I can't figure out how to fix it and it's annoying the heck out of me. Really, I had nightmares about this stupid, stubborn column. This explanation had to be written for two reasons: 1) so you folks don't think I did this on purpose or just to annoy you as my blog did to me, and 2) just to vent because it's bugging me that much.

A word to the wise: don't neglect your blogs people, they get cranky.

Happy Birthday, Papa.

Today would have been my Papa's 94th birthday. Missing him so much. This world was lucky to have him for 93 incredible years.

La Vida Loca

Yeah, I went there; I just used a Ricky Martin song to describe the months since my last post. Desperate times folks, desperate times.

So, let's catch up. I've been avoiding this post because I know I'm going to cry, it's inevitable. I wrote my last entry late at night on September 15th. The very next morning, just before 8 A.M., I received a call from my Grandma Helen. Her shaky voice immediately told me what I had suspected as soon as I saw her name on my caller I.D. at such an early hour, my Papa had passed away during the night in his sleep. The weeks that followed were sad, hectic, and confusing. I knew my papa's time on this Earth was short, I'd even mentioned that here, but it didn't make his funeral any easier to attend. My papa was incredible, truly incredible. Words can hardly do him justice. I am so lucky, blessed and fortunate to have had him in my life. See, told ya I'd cry.

So hi. Hi to everyone I've been neglecting and hi to my awesome friends and family who read my sporadic posts. I have to say that my decision to warm the bench this semester and not attend classes was such a smart one. This void in my schedule has allowed me to spend time with my grandma now that she's on her own while still maintaining my health. Now that I mention it, my health has been good verging on great. The only issues I've had have been port-related. In fact, my port issues call for their very own paragraph.

Since I got my port in May I've only used it for IV antibiotics once. I still head to the hospital once a month to have it flushed and ensure that there aren't any issues when I do need the line. When I went for my flush this month the nurse was unable to get any blood return from the line. The medication was flushing properly but when they pulled back for blood nothing happened. This is usually a bad sign. After a few tests the following week, my doctor decided it was simply a clot at the end of the line. While this clot prevents any blood draws from the port, it doesn't affect anything going into the line. So my port works... kinda. I wish it was fully functional but I'm just thankful it works at all! My doctor's first thought was that it would have to be removed. Phew! Dodged that bullet.

Other than my port drama, I've been in relatively good health. I did have to take a trip to the emergency room this weekend for what turned out to be a kidney infection. Uncharted territory for this girl! Luckily the cure was as simple as Cipro and some pain pills. I have a clinic visit coming up in a few weeks that will really tell the tale as to my overall health. If my doctor wants to do what I think he wants to do (which he will) I will probably end up in the hospital for a couple weeks at the end of December. The purpose for such a stay is what CF docs like to call "maintenance"; fancy schmancy talk for getting ahead of any and all infection. I'm by no means jazzed about any time I have to spend in the hospital but I won't protest too much this time. If I'm being truthful I will admit that I feel myself teetering on the edge of health and sickness so a "maintenance" stay might be for the best. I'll let y'all know what happens.

I hope this post finds you all happy, healthy, and already started on your Christmas shopping... unlike me.
:)

Frolick. Play. Treatments.

Coffee chats with Grandma Inez, laughs with my sister, lunch dates with Allie, lazy days watching my favorite shows, quality time with Grandpa, and lots of treatments... that's what I've been up to the past few weeks. I have been so pleased to spend my time with such amazing folks. I truly am so very lucky. Tomorrow night the fun and frolicking continues! How could I possibly top the activities listed above, you may ask... with MAROON 5 tickets of course (insert appropriate shriek here)!!! I love them oh so much and may or may not know their entire CD backwards and forwards. I'm more than a little excited. My friend Kelly and I are dressing up fancy-schmancy and going to dinner then the concert. Woohoo! I know, it's almost too much fun and excitement for one little blog post.

On a little less exciting note, I've also been fighting an infection that seems determined to inhabit the dark and scary parts of my lungs. Don't fret, I seem to have fought it off for the most part. Still feeling crumby in the mornings and at night but I have a few prime hours in the middle of the day when I am able to breath easier. The times when I can't breathe easy really freak me out. I don't know if it's unique to CF or if everyone feels this way but I swear that each illness or bug makes me feel less and less resilient. Very frustrating, especially since I'm such a basket case already. I'm a bit of a control freak, type A personality, and ultra claustrophobic with a giant side of anxiety, so when I feel like I can't breathe (as such is the nature of CF) I freak out a little... okay, more than a little... a lot. Just this bug that's been threatening to invade my lungs has been wiping me out. I am thankful that I've had the time and opportunity for rest these past few days. Alright, no more whining in this post; you have my word.

I promise to post a completely bias and adoring review of the concert in the next few days! Like I said, I am SO EXCITED. If you are reading this and you're one of the people mentioned in the first sentence of this post, I love  every second of my time with you. Just saying. :]

Taking A Break

Today is Cierra's first official day as a senior. Aaah!! So exciting. While Ce and most of my friends will be starting classes today, I will not. After much careful consideration and seeking of advice from all the right people, I have decided to take a semester off.

As many of you know, my last semester took quite a toll on me and my health. While I love school and always enjoy my classes, I think it would be best to make sure my health is on solid footing before I run myself into the ground again. Three of my four college semesters have ended with me in the hospital and I'm not eager to go through that again. Hopefully a few months off will allow me to focus on my treatments, raise my lung function numbers, and get the bugs that keep causing these severe exacerbations under control. Fingers crossed!

There was another major factor in this decision: my 93 year old grandpa. His health is failing quickly and I'm afraid that he won't be around much longer, much less at the end of the semester. His wife, my 80 year old grandma, also needs help and support as she has decided to keep him at home during his final months despite her failing health as well. Taking some time off of school will allow me to spend precious time with my grandpa and help Grandma care for him and herself.

Come spring I plan to enter the EKG Technician Certification course at TMCC. This course would open up a wealth of career opportunities while allowing me to finish my degree when I feel healthier. I'm pretty excited about this plan.

I've spoken to a few people who have adamantly argued against this decision but I'm confident that this is the best option for me right now. So much of Cystic Fibrosis is about getting ahead of infections and taking preventative actions; this is my preventative action. Thank you to my Aunt Maria, my dad, Allie, Grandma Inez and Cierra for being so supportive and just plain amazing. I love them!

Obsessed

Currently, I can't get enough of the following things:

-Iced, soy, sugar free, vanilla lattes
-Marc Anthony's voice
-Jensen Ackles' face
-Those wickless candle wax-melter things... my house smells amazing!
-Things that are mint scented
-The King's Speech
-Purple and green
-Girls nights with my Cierra and my Allie!
-Sleep
-"Faster" by Matt Nathanson
-Supernatural (possibly because of Jensen Ackles' face)

Just in case you were curious... or extremely bored. Either way, you're awesome.

Summer Adventure #1: Salem Wedding!

Like I said in an earlier post, this summer was INSANE. We had two weddings to attend in two different states, one of which my dad was officiating. Our first summer adventure was wedding number one in Salem, OR (not officiated by my father).

We drove up on a Tuesday and returned home the following Tuesday. Cierra, my dad, and I had a truly amazing time! The Jenkins also came up for the wedding (bonus!). The word that comes to mind when thinking about this trip is "fulfilling". While the folks that I call my "Oregon Family" aren't actually blood, I feel at home whenever I'm near them. And Salem, I kid you not, is one of the most beautiful and wonderful places on Earth. If you haven't visited you're missing out.

Ce and I spent almost every day helping out with pre-wedding craziness and preparations. It was a busy week but so worth it. I already miss my favorite Oregonians so much! Here are a few pictures from the wedding reception courtesy of the lovely Terry Jenkins (since my summer aversion to responsibility and commitment obviously extended to picture-taking). The wedding was perfect and reflected just how amazing the bride and groom are.

Summer adventure #1 = SUCCESS!

Emily, me,  & Cierra in our purdy dresses.

This picture made my day. Hilarious!

We so dang cute.

Familia!

Show 'Em Your Scars

Yesterday, I read a Facebook post from one of my high school classmates. The post was, "If you want to get to know someone, show them your scars". I know that what she meant was all figurative and deep but my interpretation was a literal one. That little line of words really made me think, hence this post.

Just a few months ago I wouldn't have had any major scars to show. Sure, I have a few PICC scars and the faded marks on my abdomen where they stole my gallbladder but nothing that's ever drawn looks or questions, until now. Of course, I'm talking about my port scar. It ain't pretty. When I first realized that it was shaping up to be quite the scar I had to decide whether to cover it up or just let it be (cue The Beatles please). I say I had to "decide" but, truth be told, my mind was already made up; I wasn't going to let a scar change what I wore or how I acted. That didn't stop people from asking about it or noticing it though, one girl even asked if I'd had heart surgery! When curious folks question the cause for such a scar I usually tell them the truth (CF, IV antibiotics all the freakin' time, PICC's are bad, ports are good... the whole spiel). Pre-port I never would've told random strangers these details of my life, but post-port I acknowledge said details and discuss them quite frequently.

 Every once in a while I do get self conscious about my scar and the teensy bump underneath it where my port sits. When that happens I just repeat the words my CF friend Tabitha (Fun fact: in the CF community other CF friends are called "Cysters" and "Fibros"... cute, huh?) once told me, "I don't feel embarrassed about it. It's a battle scar". Truer words were never spoken, er, typed. Circling back around to the whole point of this post, thank you random ladies in my life for making me appreciate silly things like the ice-breaking qualities of funky scars. Maybe nowadays I'm a little closer to everyone I meet because I choose to show them my scar.

Summer Slacker

Hi there!

It's been awhile. Too long, if you ask me. These past couple months have been busy, crazy, joyous, relaxing, stressful, and refreshing all at once! My lack of blogging has less to do with my summer plans and more to do with my hopes to avoid commitment, responsibility, and CF as much as possible this summer. Those of you who know me well know that I tend to over commit just a bit; this summer I tried my best not to. In fact, I tried to slack as much as humanly possible... and let me tell you, it felt GOOD. I do apologize for being so darn unreliable.

Anywhoo, this next week before school starts up again I will blog at least 2-3 times and chronicle my summer slacking. I also have some new things to write about regarding my plans for this semester. Yay!

Below is a little sneak peek of the fun I had this summer: me revving a '68 Chevy Impala SS convertible!! I hope each and every one of you enjoyed your summer as much as I did! :)

-Haley

I Haven't Been Kidnapped

... But most of you knew that.

I apologize for my lack of posting over the past few weeks. I have been pretty burned out on anything CF related. Unfortunately, that included my poor, neglected blog. I'm finally feeling a little less reclusive.

I have so many things to write about! Where to start? How about where I left off in my last post. I had my port accessed and that was a pain, a painful pain in the butt. Dr. Hulka did a great job placing my port so that it wouldn't be totally obvious but that also has a downside when it comes to access. Apparently, placing it deeper and therefor making it less noticeable also makes access more difficult. Also, the scar is directly above the access point. This first week it took three stabs to get the line placed. The second week it only took one try. Woo! This last week (the third and final) took another three tries. Not the best experiences of my life.

Other than difficult accesses and itchy dressings, this port thing isn't too bad. I'm able to wear t-shirts that cover it up completely and if you didn't know I had an IV in you definitely wouldn't be able to tell. That's a huge plus over the PICC lines. Also, the nice people at Arlington Clinical were able to put my high doses of antibiotics in syringes instead of pumps. That way a full dose of both antibiotics only takes about 20 minutes instead of two hours with the pumps. Those darn antibiotics haven't been very nice to me though. The first week was really, really tough. I was sleeping about 18 hours every day and when I was awake I didn't have the energy to do anything. Nausea also visited me more than a few times during these past few weeks. No fun. My body seems to have adjusted now and I've had more energy the past few days. Here's the great news: I get my IV pulled on FRIDAY!! Yeah, I'm just a little excited. I also have a doctors appointment with Dr. Budhecha on Wednesday and I'll let you know how that goes.

So what have I been doing to help pass the time between IV treatments? Hanging out with my Cierra and Allie! Gosh, I love those two. Supernatural marathons with Ce and nights at Allie's playing Candyland and Apples to Apples. These two have been incredible distractions. :)

All in all it's been a good few weeks but I couldn't be happier to get this IV out of me. Thank you to all of you for being such awesome friends and family. I don't know what I would ever do without you. I'll try and check back in sooner rather than later!

A Few of My Favorite Things

Just finishing my last treatment of the night and I thought I'd give a little credit to the things that make my treatments a bit more bearable these days.

--My favorite TV shows: Grey's Anatomy, CSI: NY, Pretty Little Liars, Bones, and Frasier (just to name a few)

--Marathons of my favorite TV shows

--Wireless headphones to hear said favorite TV shows over my machines

--Orange Gatorade

--My NOOK 

--eBooks

--Real books
--Coffee Frappuccinos

--Facebook

--My dog Max

--Slurpees (my guilty pleasure)

--DVR

--Funny, sweet, or just plain pointless text messages

... And most recently? This blog!

It's About IV Time

I've finally been approved for home healthcare thanks to the hard work of my doctor and social worker! I'll head over to Arlington Clinical tomorrow at one and they'll access my port for the first time. Woo! After they access the port and secure the new line I will be free to go home and hook up my antibiotics.

While I'm both grateful and happy to have all these amazing people on my side and finally get this insurance fiasco behind me, a three week course of IV's doesn't excite me at all. Plus, it's a TOBI month starting tomorrow. Tobramycin, a bi-monthly antibiotic I inhale through my nebulizer, wipes me out on a normal day. The combination of 28 days of TOBI and 21 days of two different IV antibiotics is definitely going to take it's toll on me. So here's to my last carefree (sort of) night for a few weeks. I think I'll spend it watching reruns of my favorite TV shows!

The light at the end of this three week tunnel is a road trip to Salem, Oregon with my sister. A giant woo hoo for that!! We're headed Northwest for the wedding of two close friends and to spend some quality time with our favorite Oregonians. My dad and godparents will be flying up too. Saying I can't wait would be an understatement. We always have an awesome time in Salem!

Besides being a little nervous about tomorrow, I'm doing pretty good. I feel great aside from some exhaustion that just won't go away. I've been so blessed to spend a lot of time with Allie, DJ, Terry, and Dave throughout this whole process. They always know just how to brighten my day or take my mind off of things. Aunt Maria has also been a rockstar. Calling daily to check on me or just listen to me whine, she's been there. I love these people! And everyone who reads these ramblings. :)

Hoping that tomorrow will be an easy day and the access won't be too uncomfortable. I'll blog about it and let everyone know! Hope everyone has a wonderful Thursday night.

Because I'm a Nerd: CF Stats

At my clinic appointment at Renown last week, Dr. Budhecha and her Physician's Assistant Kathy brought me lots of new papers to sign. Usually this would be suspect behavior but on that particular day I had heard the excited whispers on my way into the clinic.

Our little CF clinic was officially accredited last year, which is a HUGE deal and means we are on the same level as Stanford and other respected CF centers. Yes! With this accreditation came the opportunity to be included in the CF Registry. The CF Registry is a list of all the CF patients at accredited CF centers and all of their information, including weight, age, BMI, treatments, specific gene mutations, medications, lung function results, sputum results, bacterias and more. All this information allows doctors and researchers to discover trends, increases in average life expectancies, and possible new and more specific treatments. Last Friday was my day to enroll in the Registry. Yay!

Although I wasn't included in the 2009 registry, I still found the information in the link below very interesting. There's still so much I don't know about this disease but I'm learning more and more every day. Especially with the help of organizations such as this one.

If you're curious about CF trends and statistics check out the 2009 CF Patient Registry Report below!

Patient Registry Report 2009

I'm a Liar... And Other Semi-Important Updates

Titling this blog "The Daily Haley" was extremely dishonest of me. This blog should really be called "The Biweekly Haley"... but that just doesn't roll off the tongue quite as well. I am pretty stinkin' excited to hear that my friends and family are reading my sporadic posts. And, apparently, they like them! I couldn't be happier to hear that.

I had my surgical follow-up appointment with Dr. Hulka today. She was very happy with my incision even though one end of it seems to be bothered by "skin separation" despite two rounds of stitches. It's nothing serious, just makes for a strange looking scar. There are worse things. Dr. Hulka is awesome. I know I've mentioned that before but I just have to say it again. I know what you're thinking, "This girl thinks ALL her doctors are awesome!"... yes, but no. Different levels of awesome, not quite the same level as Dr. Budhecha (hey, they can't all be saints).

Speaking of Dr. Budhecha, I ran into her at Renown on my way to Hulka's office this afternoon. I was reminded (as if I needed a reminder) why she is such a special doctor and I am seriously SO blessed to have her. We chatted in the hall for a few minutes, she looked at my incision and gave it a thumbs up, then we started talking about the insurance fiasco that is now stalling the commencement of my course of IV antibiotics. Not only is she trying extremely hard to work around my specific requests but as we were talking she knew who my insurance providers were, in the correct order, and how the systems should be working together. I have a lot of doctors and she is the only one who takes the time and cares to know and research that information. And remember it! Like I said, she's a saint. She also called me earlier this week after office hours and gave me a pep talk that nearly sent me into tears. I just can't say enough good things about her, as you can tell!

Now that I've mentioned the insurance fiasco I'd better devote a paragraph or two to it. I was approved for Medicare earlier this year and it took effect just last month. Before Medicare I had Tricare as my primary and only insurance. Tricare and I got along just fine, in fact, I hardly had any trouble with them ever. For some strange reason when Tricare and Medicare get together Medicare becomes the primary and Tricare becomes the secondary insurance. If it was any other insurance besides Tricare, Medicare would take the backseat as the secondary. Now the fun starts.

The whole point of IV antibiotics through the port is to keep me out of the hospital where I would be exposed to countless dangerous bacteria. As a rule, doctors want CF patients in the hospital as little as possible because of the high, high risk of contracting other infections. So to avoid all of that doom and gloom we get IV antibiotics at home delivered via a home healthcare provider and a home health nurse that visits once or twice a week. Unfortunately, Medicare doesn't cover home healthcare unless you are homebound, which I am not. The only other alternative are frequent visits to the infusion center to get my daily doses of antibiotics. Dr. Budhecha isn't too keen on that idea because it's still essentially a hospital. Luckily, we have Danielle the Social Worker as our secret CF weapon! She has been hard at work all week fighting with both insurances. I'm hoping Danielle is able to work some magic because home healthcare sounds so much more appealing than either of the other options.

Other exciting business going on this weekend:
-The Reed High Art Festival was tonight and Cierra had SEVEN pieces on display.
-Tomorrow night is Cierra's Junior Prom... which means a very busy day of running around for my dad and I.
-Sunday I will finally be well enough to go to lunch with my grandparents for the first time in over a month. Yay!

I think that's everything. You may now consider yourself officially caught up! Thanks for reading!!

A Very Im-PORT-ant Day

This post was started and intended to be posted from pre-op on Friday. Unfortunately I type too slowly and the pre-op nurses move too fast. I finally got around to finishing it today!

May 6, 2011

Hi there!
I'm sitting in pre-op feeling suspiciously calm. As you can see, they've dressed me in a lovely outfit for the occasion. The IV is started and I'm waiting for the doctor to come in and go over everything one last time. Perfect opportunity to blog about this morning's appointment at the CF clinic at Renown.

My FEV¹ (overall lung function meausurement) is up from 95% three weeks ago to 98% today. That was awesome news! My doctor and I also talked about the latest and greatest CF parafernalia on the market. These include the Vest 105 with programable treatment variations (I still have the 104!) and the Trio nebulizer that nebulizes medicine at the speed of light... maybe not that fast but you get the point.

Overall a VERY good appointment! The great thing about the CF clinic at Renown is the team I get to see. There's Heidi the nutritionist, Shelly the Respiratory Therapist, Kathy the Physician's Assistant, Danielle the Social Worker, and Dr. Budhecha. Talk about multi-faceted care! Since I had to medically withdraw from my classes this semester, Danielle the Social Worker contacted all my scholarships and made sure that I wouldn't lose any of them because of the withdrawal. HUGE help since I was super concerned about losing my Millennium Scholarship.

Like I said, awesome appointment and a great way to start a very big day. Dr. Hulka and the anesthesiologist just dropped in. I'm feeling very comfortable about everything! Plus everyone (and I do mean everyone) keeps complimenting me on my hair. Very cool!

Here we go. Wish me luck! :)

Haley is Now PORT-able!

Sorry for the tardy posting, I haven't felt up to typing yet.

The surgery went really well! The operation took about twenty minutes from start to finish and it took me another two hours to shake off the anesthesia. I did have some issues in the recovery room. When I first came to I couldn't breathe so I asked for an albueterol treatment through the nebulizer and that seemed to help a lot. Then I had to be put on oxygen because my pulse oxygen levels kept dipping into the 80's. Also, they weren't able to control my pain with Percocet. I've had that problem in the past but I always forget to mention it. Huge oops. Once I was released I was able to take the Vicodin Dr. Hulka prescribed for me and that seemed to do the trick. Yay for Vicodin!

I was able to sleep for a full eight hours last night thanks to the painkillers. YES! Today has been rough since I slept a little too long this morning and got behind the pain curve. A visit from the amazing Miss Allie and a coffee frappacino from Starbucks definitely brightened my day. Love her!

I have three incisions, two little ones about a half inch in length and one big one about two inches long. They're pretty black and blue and a bit swollen but already I can tell it won't be nearly as noticable as I feared. I actually like it... weird, I know. When I have a little more energy I'll post a picture and finish the entry about my clinic visit that I started while waiting in pre-op.

My family and friends have been incredible. Between the texts and phone calls and visits... they're just amazing!
So, so far so good. I'm excited to see how the port looks when I'm all healed up. I decided not to start my course of antibiotics in the hospital and I'm SO glad I didn't. I can't imagine tugging or adjusting a line from my incision right now. I'll probably start the two week course at the beginning of the week with the help of a home healthcare nurse. Hopefully I won't be as sore by then.

I'm now happily PORT-able! :)

Nerves

That past couple of days have been rough. I am a worrier by nature so all of this port a cath business has me worrying myself in circles. These are some of the conversations I've had with my family and close friends over the past few days:

- While the port a cath is the best option for me since I refuse to go through with another scary PICC line, I still don't like my options.
- This is my first real taste of "hey, you're actually sick" and I don't like it one bit. So yeah, I'm scared.
-What if I don't like it? What if it's so unsightly that I just can't stand it? That one is really freaking me out because right now I live a relatively normal life with little to no restrictions or obvious outward signs of CF. I know it's just vanity but I can't help it... I'm freaked out!
- I really wish I didn't have to make this choice. I wish it was a nonissue.
-But it is an issue so I have to deal with it and process it. The port works for so many CF patients and they love it.

Today was a better day than yesterday (at least I wasn't crying every 10 minutes). I'm hopeful that by Friday my nerves will have calmed and I will be able to hold it together. I know I will feel 95% better after I speak to Dr. Hulka (surgeon) and see the placement and talk about the size again. That will help... A lot. My dad and sister have been so great even though I haven't. As a family friend said when we had coffee yesterday, my "mental framework" is a little shaky and my moods are following suit. Sheesh, what a mess! Like I said, it's getting better but I'm still nervous, scared, freaked, and ready for all of this to be over.

I'm still not sure if I will be released after the port placement or if I will opt to stay for the night so they can start my IV antibiotic course in the hospital as opposed to at home by a home healthcare worker the following week. Decisions, decisions...

You'll know when I know! Though I'm not even sure anyone is reading this. How embarrassing would it be if I'm just talking to myself out here in cyberspace?

A very special thank you to Dad, Aunt Maria, Cierra, Allie, and Kim for being there for me in my various times of need. I don't what I would do without these wonderful people.

Sisterly Silliness

It's great to have a best friend for a sister. Things are always more interesting when we're together! The past week has been especially exciting with our birthday, the Cystic Fibrosis Foundation's Great Strides walk, my medical drama, Easter, and the annual Stempeck family Bunny Run. Below are some smile-worthy snapshots from our crazy week!

Easter Eve - Candy for the 2011 Bunny Run

Birthday time!

Yes, that cake is as good as it looks.

Everyone needs at least one awkward candid.

Laughter.

Sporting our Great Strides shirts!

Blow Away Cystic Fibrosis!

Port vs. PICC... Port Wins

Yesterday was a day for decisions, and not the pleasant kind. While deciding to get a semi-permanent port instead of a temporary PICC line (multiple PICC lines actually) was the right decision for me and my lifestyle, it still sucked. Try as I might there's just no other way to describe it.

I've known Dr. Hulka for a few years, ever since she took out my gallbladder (isn't that how all great friendships start?). She is awesome, just plain awesome at what she does. Friday rolled around and with it my appointment with Dr. Hulka to discuss port placement. She did everything she could to reassure that the they would use a "low profile port" so it wouldn't be as noticeable and it would be super easy to access whenever I needed it. Dr. Hulka also showed me where she thought it should be placed, about two inches below my left collar bone, and it was the same spot I had chosen. All signs pointed to yes so I booked my surgery for next Friday, May 6th at noon. I already had a CF clinic appointment that day at 8 A.M. so it will actually work out perfectly. I'll go to my clinic appointment as usual and then check in for my surgery at 10:30. I decided on Renown this time instead of St. Mary's, so we'll see if that's my new home hospital.

The surgery only takes about thirty minutes and is an outpatient procedure. When compared to the anxiety, discomfort, and consciousness of a PICC placement, the port is a clear winner. That doesn't mean I'm not nervous about it, I definitely am. That's the downside of making a choice between two unpleasant scenarios, I'll never be completely comfortable about it. Hopefully by this time next weekend I will have only good things to say about my new port (fingers crossed).

A friend of mine also played a huge part in this decision. Tabitha, a fellow CFer has a port and couldn't say enough great things about it. She also hates PICC's and suffered nerve damage from them. Not only did Tabitha reassure me that a port is less traumatic than a PICC, she also told me about everything she is able to use her port for. She has been a huge help and I've only known her for a week! My dad actually met her at a fundraiser in Winnemucca and she found me on Facebook. Gotta love Facebook!

The more I talk about the port the more at ease I feel about everything. This is going to be a good thing, I know it.

A Little Poking and Prodding

I had my first appointment with an allergist on Monday. My CF doctor, Dr. Budhecha, seems to think that some of my symptoms may be exacerbated by allergies. Since I'd never had any allergy testing before she decided now was as good a time as any. How convent is it that the allergist is in the same office as Dr. B?

Having made my appointment for Monday morning on Thursday afternoon, I had plenty of time to worry myself into a hot mess about what allergy testing would entail. Also, there were certain members of my family, whom shall remain unnamed, that spent the entire weekend telling me horror stories about needles and reactions. I was sufficiently freaked by Sunday night. Sheesh. When I go to my appointment on Monday I was relieved to discover that they don't use needles in their testing. Instead they scratch you 56 times. Yeah, doesn't sound too appealing but compared to the alternative... scratch away!

After some poking and scratching and 20 minutes to allow sufficient reactions or lack-thereof, the results were in. Drum roll please...

Not so fast. First I have to explain the stakes, cause they were high. The allergist was essentially convinced that I was allergic to my dogs, specifically the dog that sleeps in my bed every night. She strongly suggested that my pets become "outside dogs" before the test was even complete. Now that the stakes have been properly explained, back to the drum roll...

Allergens:
-Cockroaches
-House Flies
-Mold
-Cats
-Sagebrush
-Tumbleweed
-Native Nevada Grasses
-Native Trees

I really got a kick out of the cockroach and house fly allergy! So relieved I'm not allergic to Max, my mini-dachshund. My cousin asked me, "what kind of girl do they think you are that they're testing for cockroaches?!!"
It gave us a good laugh.

Finally Blogging

First of all, happy happy happy birthday to me and my little sister Cierra! Today I turn 20 years old and she turns 17! Yep, very exciting.

Second: Yes, I've finally decided to start blogging. This is the easiest way for me to keep my friends and family informed and up-to-date on all of my Cystic Fibrosis related news and developments. Plus, I couldn't let an adorable blog template like this one pass me by. No way Jose!

The past couple of weeks have been really, really crazy. I started getting sick about three weeks ago and I'm still not better yet. It's usually times like these, when I'm taking a while to bounce back or get better, that my CF doctor brings up a PICC line. Here comes the designated whining portion of this post: I hate PICC lines. I mean really, really loathe them. I've had three since I was diagnosed and I swear I get more and more anxious about them every time. My last PICC (August 2010) left me with some nerve damage in my left hand in the form of numbness and tingling in my fingertips and was a very traumatic experience overall. Okay, whining portion complete! 

In an effort to relieve some stress and decrease my anxiety my doctor discussed other IV antibiotic options. One of which was called a port -a-cath and is inserted under the skin below your collarbone. There are a couple of other options but I really took a liking to that one because it lasts for 2-3 years (that would mean six PICC lines) and can be accessed for blood draws, basic IV's, and IV antibiotics whenever needed. There is also a more temporary central line available. I have a consultation with a surgeon tomorrow and then I will make up my mind. Whatever I decide I will most likely be in the hospital for an IV at some point next week. I have an appointment at the CF clinic at Renown on Friday, May 6th for my basic check up too. 

Like I said, craziness! I also had an appointment at the allergist on Monday that I will post all about later. 

... Have I mentioned that today is my birthday? :)