Merry Christmas Eve

Wishing you all a very Merry Christmas Eve and Christmas tomorrow.  May we all be reminded of just how lucky we are to have such amazing family and friends in our lives.  I am simply happy knowing I have this "breath within me" and the support of all my loved ones :)

Twenty Nine, going on...

"Nobody grows old merely by living a number of years.  We grow old by deserting our ideals.  Years may wrinkle the skin, but to give up enthusiasm wrinkles the soul. "

~Samuel Ullman 

"By the time you are thirty, you will need a lung transplant".  I will never forget those spoken words, words that I imagine only narrowly escaped the lips of a concerned doctor, but left a scar within my mind so deep it still bleeds.  As I celebrated another year of my life, I am so incredibly thankful to have my youth and my health, for all it is.  Birthdays were (and still are) a time of celebration for me, but that celebration has mutated over the past few years into something different than getting tipsy, dancing the night away and waking up with a raging headache and a trash can next to the bed.  It is about much more.  It's a celebration of another year of memories, laughter and experiences.  It's another year to be thankful to have had and a challenge to make the next year even better.  Over the past couple of years, I have had to come to terms with some incredibly challenging circumstances, but with that I have become even more appreciative of each year, each day I am given.  I've been given the opportunity to challenge myself in ways unimaginable both mentally and physically.  I know that the challenges will continue and likely become harder, but I am prepared to make my last year in my twenties better than ever and embrace my thirties with all I have.

Some people fear aging.  I welcome it with open arms.  Screw getting botox for those wrinkles you earned and a face lift that make you look like you are in chronic shock.  What once was, was and what is now, is. I can certainly appreciate the desire to keep a youthful appearance, but we all have to be accountable for some things and not depend on fillers and scalpels to do all the work.  A few fine lines and grey hairs only distinguish a person and give them that personal touch so many wish to have vanish.  I have a different opinion, after being told I might not live into my years of deep wrinkles, depends and dentures.  I say, BRING IT ON!  As each birthday passes, I'm one step closer to hanging with the old folks (which I love all too much by the way) ... "Bingo Babes"...I can see it now :)

In all seriousness, as I approach my last year in my twenties, I only hope that it can be as good as or better than years past.  I hope a year from now I am as healthy or healthier than I am today.  I hope this year is filled with experiences that enrich my soul and challenges that make me stronger.  I pray my body cooperates with me and that I can prove some people wrong in the medical industry.  "You say thirty, doc?"... "I say screw you and your insensitive comment, I'll come knock on your door with my own two hands, on my thirtieth birthday and we'll toast over a bottle of the finest champagne your lips have ever tasted".  Don't tell me my magic number, I run the show here dammit!

As you can see, I can a little rattled when thinking about some of the things I've been told by the drs. It's a numbers game with them, and rightfully so as they base their decisions on previous experiences, studies, etc.  But, I am an independent woman, with the determination and will to fight until the very end, don't they know that?  Don't they know I have been the Ultimate Fighter in this battle my entire life?  There are no limits to what I can or can't do.  I train every single day, multiple times a day against this beast raging inside my airbags. There is no backing down now, the fight is on and will remain on.

A great quote to finish this blog, written by someone who we all know has had his share of health problems, and has rallied back with admirable strength:

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell"

-Lance Armstrong

And to my biggest supporters.... I my friends, will Fight Like Hell, the "Rebs Way"!!

Another Tough Visit - Houston

As the title suggests, Bob and I had our first visit with a new lung specialist down here in Houston. She was really great, and I think she'll be a great resource for me down here.  I just can't let go of my Chicago doctor, as she has really been magnificent. So for the time being, I will be seeing both.

Anyhow, with this new doc, came some tough discussions, tough concepts and a lot of heartache.  Nothing new was said, in fact it was as though a year ago in October was played all over again, just in Houston with a new doc. Last October 2010, Bob and I had a huge dose of reality injected into our lives when my doc talked to me about transplants, children, my lifeline, my fate.

This past visit proved to be much the same, the doctor being different. Discussions were hard.  I don't know if I can describe how it feels to hear a medical professional, someone who has seen it a million and five times, say with regards to a lung transplant, "it's not a matter of if, but when".  With regards to children, I was told that if I were to become pregnant, it would be "life-threatening". She firmly nodded her head with agreement that this is the typical path as Bob told her how it seems like I need more treatments daily and how I can't do much in the morning until I have all my therapy done.  She advised me that if possible, I should not work and focus on taking care of myself and enjoy being as healthy as I am today, for one day there will come a time when I will have trouble taking care of myself.  How is a 28 year old, who longs for that storybook tale of being an old, wrinkly grandma beside her best friend, the old and wrinkly husband to deal with all of this?  So far, it's been a lot of tears, some anger, some resentment towards this ugly beast inside of me, and some feelings of rebellion.  Following these mix of emotions comes determination and the willing spirit to fight till the very end. The passion to share my story and help others along the way.  Then courage creeps in slowly and I begin to feel a little better, until I see that cute little family with the dogs, the little newborn and health, and I begin to feel all these emotions again and before I know it I am having to hide my tears.

To say it's hard is an understatement. I am an emotional wreck at times and a strong willed woman at other times.  Not once as a teenager playing competitive soccer, would I have ever imagined that only 10 years later I would be sitting in a cold, sterile doctors room hearing that my life will not be that fairly tale I imagined. There are some things one person can be diagnosed with and "win", unfortunately this is not the case for me.  Sure I can win in a different capacity, but ultimately, this disease is progressive and unforgiving.  I can win on a daily front, by being diligent with my treatments, working out, eating healthy and getting my rest.  I can win, by keeping a positive attitude in these negative, dark moments.  I can win by spending time with family and friends and simply enjoying the small pleasures in life.  Because in the end, that is what it is all about.

As each day comes I wake up thankful for everything I have.  Despite the grave seriousness of my condition, I get a much needed dose of laughter everyday just being with my husband, talking to my Mom and watching my silly little dogs.  I am constantly reminded of the love I have within my family, by simple calls to check in, or a quick email to say hi. I can't tell you how much those little things mean. So to those of you who show you care in those simplest ways, thank you.

As this holiday season is in full effect, I urge you all to be thankful for things that may seem ordinary to you.  Be thankful for your health, your friends and family.   Be thankful for your job and that you can push yourself at the gym, or cook for your family.  For it's these little things that some people aren't able to do, that long to. To you it may seem like a chore, to others it is a pure wish and dream.  Finally, be kind to others.  You never know what type of struggles they are enduring and how much a simple smile or "hello" will brighten their day.  As someone who simply struggles to breathe on a daily basis, I can say that a simple gesture of kindness goes a long way in my books :)

An unspoken connection

As I write this today, my mind is consumed with care, compassion, worry and hopeful thoughts for someone who although I have never physically met, we share a connection.  A beautiful young girl (who I met via cysticlife.org), got a second chance at life the other day. After about 7 months on the transplant list, she received "the call" that a set of lungs had been found for her.


After a grueling 8 1/2 hour surgery, she was back in the ICU, sedated and ventilated (all very common after this surgery).  Overnight her first night, they discovered that she had some internal bleeding and had to rush her back to the OR.  She was then extubated (taken off the ventilator) just one day after having a double lung transplant.  Because this is such a complicated surgery, there are bound to be ups and downs and I just got word today that she had to be placed back on the ventilator.  I learned through a friend of hers who has also had a lung transplant, that one basically has to re-learn how to breathe and often the first few days can be difficult.  Often times, nerves are severed and the patient can not actually "feel" their lungs.  So, this is hopefully just a minor bump in the road, and hopefully it will allow her to get some much needed rest as her body has been through an incredible process. 


I have an unspoken connection with her as we are both nurses, both dealing with the challenges of crappy lungs.  We shared many emails back and forth discussing the joy we get with being nurses and the challenges we face as we manage trying to take care of others, as well as ourselves.  We shared stories of going to work and infusing antibiotics into our patients PICC lines, and the same day (often minutes later) having to infuse ourselves, in our own PICC line which we ever so discretely managed to hide from everyone at work.  The guilt we felt over having to call in sick so many times, and the pure love we have for helping others.  


Then, all of a sudden she became really sick and her life took a turn.  She was now constantly on IV antibiotics, she was in a wheelchair and on oxygen 24/7.  Life changed that quick.  Now, she felt as though she was the "forever patient".

I relate really well to many with CF and other chronic illnesses, as we have struggled our entire lives to be "normal".  This silent bond between people who often have I never met, can sometimes be much stronger than I ever believed possible.  We share stories of laughter, memories of sadness and hope, times of great ups and those of depressing downs.  It is tonight that I ask when you read this blog, please say a little something for my friend and the donor family.  She has been given the blessing of another chance at life, while another family is grieving over the loss of a loved one.  


I also ask that you take a moment to become an organ donor.  It is important that you register in the state that you are living and NOT JUST ON YOUR LICENSE.  On your state's donation page you can sign up and it literally takes less than 5 minutes and will ensure that there is no confusion over your organ donation status.  Your short time registering, could save many lives.  Become an organ donor.

Howdy y'all ;)

Holy smokes have we had a lot of change the past few months!  We painfully sold our first home, which if you have ever sold a home you know how stressful that can be.  After one deal falling through completely unexpected, my stress level was through the roof on this second deal.  Considering we closed on the house and moved out of the house on the same day, it gives some indication as to how small of a time frame we had for when the deal was actually "sealed".  But after many sighs if relief and literally feeling the stress melting away, we made the 1,100 mile journey down to Houston.

I have an amazing hubby who both loves to drive and also gets bored easily, so he drove...the ENTIRE way!  The first leg of our trip was about 14 hours, which made for a very long day.  We made it from Chicago to Texarkana, Tx.  We arrived at our hotel and immediately felt very uneasy about our location and the surrounding occupants...eh, I felt like I was in the SOOOOUTH side of Chicago.  So, we went with our gut and found another pet friendly hotel nearby where we slept very well.  Our second day we had a much shorter drive (6hrs), and we made a pit stop at this local roadside Tamale truck.  YUM!!  Welcome to Texas where you can get half a dozen tamales and two sodas for $7!!  Our kind of deal :)

Tasty Tamales curbside in Texas

We arrived on Saturday, October 8th.  Bob was in Houston that following week (last week) and we enjoyed exploring our new neighborhood, working out and eating some tasty local food. We spent about 12 days camping out with an areobed, plasticware and the pups.  Needless to say, I could not wait for Tuesday of this week to come, when our movers arrived with the rest of our stuff!  Our "deluxe areobed accomodations" are now packed away, we have a real bed, a real couch, real cookware and after three long weeks without...we now have that thing called television!!  As our movers brought boxes upon boxes in our little apartment...space filled up quickly and that was without any of our furniture.  I literally had a tiny "walking pathway" from our bedroom to the kitchen , the rest of the floor space was covered in boxes. One hundred and forty eight boxes later, I am sloooowly making my way through the cardboard mess. 

This is a picture from the kitchen area. Not much room to move!

Bob is currently in route to the apartment from New York. We are looking forward to spending some time together this weekend, and maybe even watching some football!  We haven't watched but maybe two college games and one Bears game this whole season.  

I've been feeling pretty good overall.  The warmer weather is definitely easier on the lungs than the harsh cold air (at least now without the extreme humidity).  I finally finished my dose of roids yesterday and ironically I had the best workout since being here today, which felt so good.  Considering we had about a couple months before moving where we were on a very irregular workout schedule, we are easing our way back into shape, but it has felt so good to workout almost every day.  

The pups are enjoying our new area as well.  They have a full acre and a half dog park right outside our doorstep.  Tarver has been a little madman, tormenting all the other dogs and playing fetch.  Today, he was running so fast that he tripped over his own legs and slid on his belly about 5 ft!!  Poor little guys is so low he just tumbles over himself if he isn't careful ;)  Our princess Bella, is a little more reserved at the dog park, taking more to the people than she does the dogs.  Today there was another dog who desperately wanted to play with her and she just wasn't having it.  After much tormenting from this other dog, she finally gave in and began frapping like she used to as a puppy!  I haven't seen Bella run that much since she was a pup.  Needless to say, she is snuggled up, snoring on the couch after her eventful evening  (somehow she managed to position herself like this under the blanket)...she is so human-like, it's weird.

Hope y'all have a great weekend!  Love to all, from the Haskin's!!

Three steps forward, one small step back...grrr'.

"Where there is no struggle, there is no strength"

-Oprah Winfrey

Well as of Monday, September 24th I finished my two weeks of IV cocktail infusions!!! How great it felt to be done.  I had a check up with my Dr. on Thursday, October 20th and I was feeling good going into the appointment.  I had most of my energy back, breathing was under control and I couldn't even cough up any junk (which is UHHHmazing for me!).  I had a few days left of IV's and I was ready to rock! My PFT's remained the same at 33%, a number that seems to remain the same despite having a good day or a bad one, or being cranked up with steroids.  I'll take that though, as long as we don't see any decrease.

So, all was well up until this past week and I started feeling extremely tight and wheezy again.  Walking up A flight of stairs left me breathless with a rapid pounding ticker.   I would wake myself up in the middle of the night to the tunes coming from my airbags.  As soon as that started, I new something wasn't quite right.  So, with the advice of my Dr. I am back on the love/hate medication that always seems to help...Prednisone. :(  I guess, a girl has to do what a girl has to do...even if it makes me a walking zombie and an emotional mess!! At least I'll be a better breathing emotional zombie  :)

With two large doses down, I can tell they are kicking in....I started cleaning this morning and I couldn't stop!! If anyone needs any cleaning, I'm your girl.  Need your furniture rearranged??  I can do that too..or if you just need someone to chat with at 4am on a random Monday morning you can probably bet I will be up drinking tea, surfing the net...and quite possibly, cleaning.  In a way, this dose of roids comes at a good time as Bob and I are in the midst of a 1,000 mile move from Chicago to Houston this upcoming week. With to-do lists longer than a $400 grocery receipt, the added punch of these roids will give me the energy I need to make it through.

Bob at one of our Houston fav's, Luling City Market. Some of the best BBQ we have ever experienced!!

Tonight will be a bittersweet night as we say goodbye to some of our very best friends we have had here in Chicago.  As we move on to this next chapter in our lives, we welcome it with open arms, a clear mind and hopeful ambitions that it will be the right move personally and professionally.  One thing I do know, is that fall is creeping in and cooler temperatures have furthered my excitement for warmer weather, sunshine and no blizzards!!  Cheers to a wonderful three and a half great years in what Bob and I believe is one of the best cities in the country.  Chicago and our dear friends here will forever remind us of amazing memories.  Moving forward we can't wait to make new and lasting memories full of yeehaaw's, cowboy boots, rodeo's, BBQ and armadillo hunting!!!

Good-bye Chicago!!!

the TRIPLE THREAT ...

"Only rainbows after rain
The sun will always come again.
And its a circle, circling,
Around again, it comes around,

But you gotta keep your head up, oh,
And you can let your hair down, eh.
you gotta keep your head up, oh,
And you can let your hair down, eh.

I know it's hard, know its hard
To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh."

-Andy Grammer

Good news is I am finally starting to feel like I am on the upswing of this thing.  Besides being a bit worn out from the early mornings and late evening IV dosages, I do FEEL BETTER!  Currently on Day 9, IV #4, stick #7.  If someone took a look at my left arm, they would think I am a left arm junkie!  That is all fine by me though, it is my so called "battle wound" :)  This time around my Dr and I opted to avoid the PICC line, which was fantastic news to my ears.  The only downside is it means more pokes for me as they have to change my IV every 48-72 hrs and I have additional pokes with any labs draws.  This may sound crazy, but I would much rather have these little peripheral IV's in and get poked more, than deal with a PICC at this point.  After the last PICC line/blood clot fiasco, I will continue to push for peripheral IV's unless it is absolutely necessary to do otherwise.  At that point, a longer term option might come in to play...the dreaded port.  But, we shall cross that bridge when it is time and until then I am a happy camper with the current plan.  Thankfully I have a wonderful nurse who is very good at IV's, and only once did my little blood highways decide to take a few turns on him.

As I was getting set up this morning to start the routine, I realized with a good amount of humor what coordination it takes to get it ALL going at once.  Let me tell you, doing the nebulizer, while shaking AND hooking up an IV....there are lots of wires to get crossed!  I just had to take a picture and although it doesn't capture the mangled mess of tubes to it's entirety you can see what I like to call the "Triple Threat" (nebs, vest and IV...grrrrr!!).  I apologize for the crazy looking pic, but this was at 5am this morning, what do you expect??? :)

So, only about 6 more days to go and I am eagerly awaiting finishing this round of IV's.  I only hope that the time between now and the next tune up will be lengthened but more importantly I hope to feel healthy during that time.  While these things are an inconvenience and by all means I would chose not to do them if that were the case, I am glad I have this option.  I am thankful that I have these medical treatments available, and I can do them all from the comfort of home.  Thanks to those who have sent me emails, cards and calls...I feel so very loved :)

Day 5, update

Today is day #5 (of 14) of this IV tune-up shenanigan.  5 needle pokes and 3 IV's later, I can say things are looking better.  Monday morning before starting this, I was pretty uncomfortable; walking up a flight of stairs seemed a challenging feat and my back ached from the constant coughing.  I did have to start up on the roids again, due to some continued tightness and wheezing, and unfortunately I tried starting with a low dose, without much relief.  Usually, I have a very high level of energy on 60mg's of this white madness (prednisone), but combined with the antibiotics, I think my system is in a bit of "overload" and the fatigue is still looming.  I have been out of the house for short periods of time each day, which has been nice.  I tend to become a bit stir crazy and need a breathe of fresh air, otherwise "cranky Rebs" will emerge.  It's amazing what walking around the block can do for your mental clarity :)

IV # 2

Fortunately, I was accompanied by mama fish for a couple of days this week, which always makes me smile.  Something about a mother's love, comforts even the most uncomfortable.  Along with mama fish, I have had two companions who have not left my side.  I swear dogs have that "sense" where they know when something is different, they know when their owner's aren't feeling right.  We've had lots of movie and snuggle time the past five days and I must say I am so happy they are here with me.

My two little companions :)

I will continue with the roids and the antibiotics and hope that they continue working like they should.  I am grateful I have the love and support from all of my family and friends, it certainly makes things a little easier hearing your encouraging words.

On a completely different note, I had a bit of an challenging encounter the other day.  My cell phone stopped working so my mom and I took it to the Verizon store near our place.  They were doing construction on the road in front of the store, so we parked in the parking lot literally next door to Verizon.

(This is taken from my car, and you can see where we walked to Verizon)

About 30 minutes later, and this is what I return to...

(post Verizon visit >:(   grrrr...

Needless to say, I was not a happy camper (and neither was mama fish).  $115.00 later the boot was removed and we were on our way.  Apparently we parked in a "private parking lot" and even though we actually went into a store that was within that "private parking lot" this little spy saw us walk 15 feet to the Verizon store and back, and decided he would attach his little prey.  What a pain in the rear!!  This is one aspect of Chicago that I will not miss, the ticketer's/tickets are outrageous.  Oh well, that's life right??? 

Happy weekend everyone!!  

Baby, I was born this way!

"I'm beautiful in my way,

'Cause God makes no mistakes 

 I'm on the right track, 

baby I was born this way"

...

"I was born to be brave"

...

"I was born to survive"

-Lady Gaga

As I sit here tonight, writing this blog, I am being infused with a viscous cocktail of the pharmaceutical type.  Yes, after a clean streak of 17 months, my body has decided to rebel against my every wish and give in to those "tiny monsters" in my lungs.  I could tell I was mentally prepared for tune-up time, when my doctor suggested I do a course of IV's, and I was a bit thankful she volunteered it, rather than my asking for it. In the back of my mind I knew I probably needed it.   I was almost relieved that this was the course of action...for a split second.  But then, my brain switched into overdrive and I started doubting my ability to take care of all the things needed, before our hopeful move in about three weeks. Packing, coordinating movers, finding a place to live in Houston, selling/donating items, last minute doctors visits, repairs on the house, all while knowing I would feel pretty crummy for about a week...and then, I reminded myself to just breathe.  All will get done, one day at a time.

Thankful for no PICC, just peripheral IV's this time!

Currently I am approaching the finish line of Day 2, of 14 of this liquid concoction.  As history repeats itself, I am reminded of how powerful these medications really are.  Fatigue set in yesterday, when I felt like I had been in a street fight, followed by running a marathon and topped off by feeling like I hadn't slept in days.  It was a struggle (but a struggle I needed to overcome) to just get off the couch, make something to eat and walk the dogs.  Poor babies, probably thought I had forgotten about them and their tiny bladders.  I was also overwhelmed with body aches, and I felt as though I had a low grade fever.  All in all, yesterday was tough.  But when the going gets tough, the tough gets going.  I continue to push myself just enough each day, because I want to get better, faster, stronger.

   Not to happy to be feeling so crummy :(

Day 2, has been better.  The body aches aren't as bad and the feverish feelings have subsided. Unfortunately I am still extremely fatigued but if the trend continues as it has in the past, I will start gaining some much needed energy back within the next week.  Today I actually made it out of the house to grab a few groceries, rent a movie and take the pups for a longer walk.  I was reminded of my "low battery indicator" quickly after returning home, when all I managed to do was watch season one of Modern Family.  Why am I sharing all of this with those who are reading this blog?? I am because, I feel it is important to share the good, the bad and everything in between.  I am certainly not at the top of my game, but I will get there again and I want to share my journey along the way, with those who matter most to me. 

Yes, my NEW PINK VEST!!! 

(Can you tell it doesn't take much to make me smile) I do have to add, this is after traveling all the way to Houston with the Vest, only to realize it didn't work.  So, yesterday I was pretty excited to put on this pinka-liscious contraption and shake away!!

As much as I feel like this is a setback, it is a step in the right direction as well.  I wish I could say I was able to maintain for 24 months, rather than 17, but who's counting (besides me, of course)??  ;)  I wish I didn't have to feel my veins burning, my body cringing and my battery drain...but this is the path I have been given and I have to "rock" this path, for no one person knows when their path will come to an end.  I'm hopeful to update this blog with each day that passes, so I can "document" the progress.  It is pretty amazing how well I usually feel at the end of the 14 days and I fully intend to get the most out of this tune up!  Thanks for all of your continued support, I will continue to fight and I look forward to starting our new journey in Houston with clean lungs and a full battery!!

As Lady Gaga would sing, "I'm on the right track baby I was born this way!"

"Sometimes there's airplanes I can't jump out

Sometimes there's bullshit that don't work now,

We are God of stories but please tell me

What there is to complain about?

Oh, this has got to be a good life

This has got to be a good life,

This could really be a good life, good life"

-One Republic - "Good Life"

Living the "Good Life" in Chitown!

As I took Bob to work today on this sunny summer Chicago day, this wonderful song came on the radio and I was overwhelmed with a complete sense of happiness.  We turned up the volume and just took in the calmness of the morning and realized once again, what a wonderful city Chicago is.  It's the simple things in life that can make such an impact on our everyday life.  

This past weekend Bob and I (along with some amazing friends) celebrated Bob's 33rd birthday!  Friday night we had a wonderful dinner with Bob's long time friend and her new fiance at our favorite Italian restaurant near our house.  We have been "frequent fliers" to this restaurant for the past three years, and they are like family to us now.  We are always treated so well and they really go out of their way to make sure our dining experience is superb.  

(I just had to add this, as these two furballs bring  us such joy!)

Saturday I cooked breakfast for Bob which included some of his favorites. Of course we had to have biscuits and gravy!  We also had a relatively new favorite of Bob's, Baked Blueberry Cream Cheese French Toast.  What a great way to start the birthday!  We then explored the Field Museum and saw a Horse Exhibit explaining the relationship between humans and horses over the years.  And, did you know....a Zebra is a Horse???? Some of you may laugh at my naiveness, but this was a true revelation in my mind.  Who knew, a Zebra was actually a horse???  Let's just say, Bob had a field day with this one!! We also saw a Whale exhibit, which was amazing.  Did you know, the blue whales heart can weigh up to 600 pounds!!!  Yet one more crinkle in the brain, as I learned this fact.  We then enjoyed TRex in 3D and learned about the most intact skeletal TRex ever found.  The dinosaur was discovered by a lady named "Sue", and therefor they named this particular TRex, "Sue".  After being tourists in our own city, we had a pizza party at Bob's favorite pizza joint, Pizano's Pizza.  A little downpour couldn't ruin this day, as we were surrounded by some amazing friends.  Finally we wrapped up the big 33, with a few drinks with some more friends later in the evening.  All in all, a fabulous way to start the 33rd year of life, for my amazing hubby!

Happy Birthday to the best partner in life a gal could ask for, I love you babe!!

A quick update!

Last week was my routine 3 month check up with my lung doctor.  As I have stated before, I often get anxious about these visits, because what used to be a fairly routine and stress free visit, have slowly turned into somewhat uncertain visits for me.  I knew going into this visit that I was slightly more worn down than usual and I knew I was coughing a lot more.  So, it was not too much of a surprise when my Dr. listened to my airbags, she said they were "singing" to her.  Ahh, those high pitched wheezes sound so harmonious don't they??  If only those sounds were a good thing, I could make a record deal!  So, I have been in full "roid-rage since last Thursday and as always they have helped tremendously!  I usually don't have too bad of side effects from Prednisone, the worst being insomnia, which I have managed to keep under control this round with drinking lots of hot tea before bed, working out, winding down my day about an hour earlier than normal and occasionally taking an Ambien for the more restless nights.

I was a bit surprised to find out that on top of the Bronchiectasis, my Dr. along with others around the country who have reviewed my case, feel there might be something else going on.  Yes, I am being tested for PCD, which is an ongoing process.  I will be going to NIH at the end of September to be re-tested for this.  All signs and symptoms point to a high suspect of PCD, but we'll see.  This other looming condition is a very rare lung disease called Bronchiolitis Obliterans.  In a nutshell, it is a condition in which the smallest airways of the lungs are inflamed or scarred causing air trapping and severe shortness of breath.  It is often found in patients post-lung transplant and it has unique characteristics that are seen on a CT scan.  I reviewed my latest CT scan with Dr. McShane and could see where there was air trapping.  Unfortunately there is no easy way to test for this disease.  In order to confirm diagnosis, it would require a surgery involving an open lung biopsy, chest tubes and lots of pain...something I (along with my Dr) feel isn't necessary unless treatment would drastically change and result in improved breathing.  One option that was brought up, was to treat me like I had the confirmed diagnosis of BO, and see how I felt.  This would require extensive immuno-suppressant therapy to help control inflammation.  It's a fine line to walk because I am constantly battling infection and to lower my immune response could be risky.  However, I respond extremely well to steroids (immuno-suppressants) and for that reason, my Dr. believes it could be a potential good therapy to try.  For now though, we will continue the course as is, making no significant changes.  My labs came back with a slightly elevated white blood cell count (cells fighting infection) and higher than normal CRP levels (CRP levels measure inflammation in the body).  I also cultured "heavy" on the bacteria that is always present in my lungs, which could be why I wasn't feeling so great.  Good news, is that my FEV1 had not changed at all, despite all of this and my not breathing the greatest.  To remain stable at this point in the game is a very good thing, so I am extremely happy about that!

One final thing was that I have been battling losing my voice and my Dr. wanted me to get it checked out to make sure no damage was being done to my vocal chords.  Since I take so many inhaled medications, they can often have effects on one's voice box.  Yesterday I saw the ENT Dr. and had a scope done to view my sinuses, back of the throat and my vocal chords.  I always get queasy at the thought of someone sticking a camera up my nose (ICK!!), but surprisingly it wasn't as uncomfortable as I had envisioned it being.  After sneezing a couple times because it tickled and a a good view of my vocal chords it was over quickly.  Good news was that I don't have any apparent damage to my vocal chords, but he did say they were a bit inflamed and swollen.  This he believes is due to a combination of the meds, coughing and chronic sinus drainage.  I am just glad nothing serious is going on with those babies and in time they should heal (fingers crossed!).  

Overall, a fairly good visit with no big changes.  Thanks for all of the continued support and well wishes!! 

Breathe Easy!

Do you have the BEAT??

Some may wonder, the beat??? What is the beat?? No, I am not talking about having that coordinated hands to feet music rhythm beat we all so wish we had (or at least I do!).  In this case, the majority of people do have "the beat", which is referring to normal cilia beat frequency.  These little microscopic cilia are hairlike structures the cover many different areas of our bodies such as the nasal cavity, the esophagus, and the lungs...and the list goes on and on.  They move in rhythmic-like sequences to catch any particles inhaled such as dust and bacteria and expel them from the body.  They are basically like a furry protective broom sweeping away all the bad stuff.  In PCD, the cilia do not work properly or at all.  So what is the point of this you ask?? Well, a couple weekends ago, Bob and I traveled to "Hotlanta" (Atlanta, Georgia) where we attended the 9th annual Primary Ciliary Dyskinesia Family Day (our first to attend).

"In Atlanta!"

I am in the process of being tested for this extremely rare disease.  Like Cystic Fibrosis, PCD is a very rare disease affecting approximately 25,000 in the United States.  But unlike CF, PCD is often very hard to diagnose and therefore only 400 of those 25,000 who could potentially have the disease, have actually been diagnosed!  The first night there we attended a "meet'n'greet" reception where we spoke with lots of individuals and  families who have been through a lot of similar situations like we have.  From the wild toddler playing with Lego's who was recently diagnosed, to the 53yr old father with PCD, we were able to share stories and experiences with people who "just got it".  We heard many stories of how people struggled to get diagnosed, and in one case it took 5 long years.  Below is a picture of a respiratory therapist doing chest physiotherapy to exemplify correct technique.

The second day we had an all day conference where we listened to specialists from all over the US speak on topics ranging from what PCD actually was, to why it is so hard to diagnose, to what it means for the patients, to the research projects they have gathered information from.  We covered topics regarding infections and what treatments best suit certain bugs, as well as the almighty BRONCHIECTASIS.  We learned many interesting facts, some of which surprised me.  For example, they have found bronchiectasis in near newborns with PCD.  They were able to make very clear distinctions between Cystic Fibrosis and PCD patients.  As far as I knew, the two sort of mimicked each other, but that is not always true.  In patients with PCD, newborn respiratory complications occurred in 100% of the patients as opposed to a much lower percentage with CF(I had a collapsed lung at 10days of age and was on O2 briefly).  CF patients don't have ear infections and require tubes, like PCD (I had to have tubes placed for chronic ear infections).  Bronchiectasis is more prevelant in PCD vs. CF(Obviously we all know I have the big bad "B").  In 50% of cases of PCD, patients have what is called Situs Inversus which means there internal organs are reversed (heart would be on the right side, the stomach and spleen would be on the right side, while the liver and gallbladder would be on the left side).  For this particular distinction, I am "normal".  Below is a picture of what Situs Inversus looks like medically.

It was just surreal and comforting to be sitting in a room with people who sound like me, who cough like me, who have to do nebulizers and the VEST like me.  To listen to the doctors who have donated their time and knowledge to be at the conference was wonderful.  We will be traveling back to NIH in Bethesda, Maryland at the end of August to repeat the special testing for PCD.  We will have to wait yet another three-four months after the procedures to determine if they can make a definitive diagnosis, but we are eager to figure this out.  The more I learn about PCD, the less I will be surprised if I do have it. Having first been told, "no you don't have PCD", to then "yes it looks like you do have PCD", to ultimately getting results that said "we are not sure, we need to repeat the tests", I just want to get an answer.   In the meantime, we will enjoy the final month or two of warm weather here in Chicago and try to stay as healthy as possible!  I have a follow up appointment with my lung doctor on Thursday this week, so hopefully all will look good and sound good :)

Southern Surprises

The past few weeks have been very busy for us!  A couple weekends ago, Bob and I along with my brother and his wife, traveled to Austin, Texas for a surprise 60th birthday party for my mom.  To say she was surprised was an understatement!  In true Jeretta fashion, she had already planned meals, activities and prepared their new home to that comforting level, in which makes you never want to leave.  We enjoyed some days in the sun out at their new pool, relaxing, reading, playing volleyball and...swatting away the largest bees and wasps I have ever seen.  When they say everything is bigger in Texas, they are not lying.  Bob was the designated "bee-man", so armed with his "bug zapper", he was called to duty and served us well, so that we were bee-free while poolside.  

"Bob the Bee-Man"

We had a couple days "pre-surprise party", so we enjoyed some wonderfully cooked meals, made by the best chef in Georgetown, and in all towns for that matter (my mom).   Then the big day rolled around, and I have to give my father a LOT of credit for pulling this party off, without even ONE hitch.  The party planner (aka- David Fishcer), was working hard for many months gathering contact information, connecting with family and friends, deciding on other fun party supplies we would want.  And he did it all without my mom's knowledge.  Now, if you know my mother, she knows everything!  I think it must have been her training while I was in high school that got her to be such a good little investigator :)

Sharon and I worked out a plan to get my mom out of the house for a couple of hours on Saturday, July 9th.  So the gals got pampered at the nails salon and then we took my mom out shopping for a few hours (all while the boys and family friends were hard at work getting the house decorated, setting up the food and the margarita machine, cleaning).   My mom had grand plans of cooking a port tenderloin for dinner that night and she put Bob "in charge" of cooking it.  Little did she know that we had a Mexican feast being delivered and some of her very best friends and family were getting a tour of their new home.  Upon our return all the guests who had come from near and far, were waiting for her to walk in!  My mom's face was priceless as she slowly comprehended what was happening. 

"What are YOU doing here???"

We had "face on a sticks" made and all the guests were holding this when we walked in.   This was truly a wonderful surprise party filled with so many great people.  Even GranBetty made it all the way from New Mexico, which was so nice!  We enjoyed some wonderful Mexican food, some tasty margaritas, a pinata and lots of laughs.

What a monumental birthday this is, 60yrs!  I have to say Mom, you look wonderful and you are like the little energizer bunny!  You are such an amazing and inspiring woman, and I am so thankful that we have such a great relationship.  You deserve to celebrate in style and that you (and we all) did!  Well, the "bag-over-the-head" for the pinata, wasn't the most fashionable, but hey, it worked!  

In all seriousness, my mother has taught me the meaning of being a "fighter".  As she fought breast cancer many years ago, I remember thinking, "she is one tough cookie".  I'll never forget the day I walked in from the bus-stop to find my mother surrounded by a box of tissues and her eyes red.  I knew right then, what a fight she had in her as she comforted me, the scared daughter, while just learning she had been diagnosed with breast cancer.  Thank you Mom for fighting that fight, as I can't imagine a day without you in my life.   I love our daily chats, texts and laughs.  Even though at times we many be hundreds of miles apart, I feel like you are right next door.  I love you!!

Good job Dad for pulling off a great party!  It is a lot of work planning things unbeknownst to Miss Jeretta.  You were often working on this while she was at the house with you in Georgetown.  Who knew you could be such a party planner?? Hum, post-retirement hobbies will include, tending to the yard (and carrying off those snakes, eeek!!!), learning Spanish, traveling and "party planning".  I see a bright future there in Georgetown!

We have such a wonderful family and I am so thankful for that every day.  I love you guys!

That little piece of GUILT.....A Husband's Rebuttal

I’ve remained purposefully quiet since our “Reality Check” back on October 21, 2010. On that day, Rebecca and I were squarely confronted with the reality of the seriousness of her condition. That day was the toughest day of my life. I felt as though my heart was crushed while being simultaneously kicked in the gut, to only then feel hollow and bewildered by what was now our new reality. It was a moment that lasted only a few seconds and was quickly replaced by concern, compassion and an overwhelming sense of worry as I looked over at my wife and saw absolute heartbreak in her eyes. I’ve never felt more powerless and sunk than I did at that moment. Sitting in those dreaded plastic doctor’s office chairs, I made a promise to myself -- from that day forward, I would be her strength and her sanctuary; that I would lead by example; that I would show her that we’re going to persevere and make the most out of whatever life throws at us; and that I would always care for her the best that I could.

That day marked the beginning of our new journey towards redefining our priorities, refocusing the lens on what’s most important, and recommitting ourselves to steadfastly loving one another, each and every moment.

In the time since, my sole focus has been honoring that promise and doing all I can to provide my wife with unconditional love, support and the life she deserves. Now more than ever, I try to keep my “husband radar” up and remain in-tune with her, her thoughts and her feelings. On the whole, I believe I’ve done a good job of this, but yesterday I was caught with a sharp hook that caused me to take a step back and reevaluate. As many of you may have already read, Rebecca recently posted a blog entry titled “That little piece of GUILT”. Upon reading it, I had no idea she was harboring these thoughts and feelings. We’ve certainly talked about them in the past, but I was unaware of the extent and continuity of the feeling. That eye opening experience has served as my “call-to-blog” and to break my silence.

With that said, here goes Hubby Blog entry 1: That little piece of GUILT…..A Husband’s Rebuttal

To my wife:

That little piece of GUILT………my quick rebuttal and overall feeling of guilt can best be summarized by swapping out “GUILT” and replacing with a well known, four letter slang term referring to pooh (and I don’t mean Winnie the Pooh) -- That little piece of SH*T -- that pretty much sums up how I feel and think about guilt. Guilt is the little monster that lives in the dark corners and shadows of our minds and emotions. It lurks there, feeding itself on things we beat ourselves up over and eventually growing to the point where it changes the way we would otherwise think, feel and act. Guilt is corrosive. It is the equivalent of rust. If left untreated, it will eat away at the surface and become pervasive; working deeper into the inner layers and eventually, compromise the integrity of the inner stability and workings of the structure. (NOTE: Please do not read this as I’m comparing you to a building or piece of machinery!). When swiftly addressed, guilt can be removed just like rust, buffed out and made new again….even better than new….with little effort. This is how we need to look at and deal with guilt.

The only positive arising from guilt is that it is sign that your moral compass continues to point true North; that you recognize fair from the unfair; that you are appreciative of those around you; and that you’re a person who wants to pitch in and do things for others. In know this is where your guilt comes from and I understand.

Permit me to now change directions and provide an alternate rendition. It’s short and to the point:

DEVOTION [dih-voh-shuhn]
Noun
1. Profound dedication
2. Feelings of ardent love
3. Love, loyalty, or enthusiasm for a person, activity, or cause
4. Ardent, often selfless affection and dedication, as to a person or principle

Anytime you feel that little monster of guilt lurking in the pit of your stomach, always remember:
1. I am profoundly dedicated to you
2. I have feelings of ardent love for you
3. I have love, loyalty, or enthusiasm for you
4. I will always remain ardent, with selfless affection and dedication to you

You are my everything and my reason for all that I do. This is unconditional and unwavering. I do things freely for you, just as you do for me. We are a team. We each contribute in similar and different ways. Have you ever seen a puzzle that is made up of all the same shaped pieces? No, of course not - and that’s why we work and make a perfect union.

I love you…today, tomorrow and all the days to come.

Your hubby,
Bob

That little piece of GUILT.

Anyone who has dealt with some form of chronicity in their life, should be able to relate to this post. Even more so if that chronicity refers to an illness or injury.  Over time, it gets OLD.  Yup, old in the sense of I am tired of dealing with all this crap, old.  Not only for the person who is directly effected, but for their loved ones, family, caregivers, friends...it affects them all, albeit in different ways.

One thing that I struggle with sometimes, is feeling guilty for what I bring to the table, (in terms of my health) to my relationships.  Yeah, I know I bring a lot more to the table than just some crappy lungs, but these crappy lungs cause a lot of "inconveniences" that I would prefer them not to.  For instance, travel.  Nowadays, traveling for me is just "tougher".  It takes me longer to get going because I seem to have longer and longer treatments.  I can't skip them like I used to, and feel okay afterwards. Then, I have all the equipment that I use on a daily basis;  nebulizer, nebulizer cups, medicine, meds that have to kept cold so therefore a cooler, syringes, and of course the almighty VEST, which probably weighs a good 20-30 lbs.  Then, throw in the fact that I am a lady, and of course, I can't pack light on clothes, shoes, jewelry...you get the point.  When going somewhere for more than an overnight's stay, I always bring everything, including the Vest.  So, flying...besides the fact that it takes me longer to get going, too have to haul all that crap to the airport...is quite frankly a pain in the @$$.  I am always stopped at security despite my efforts to explain the them what this machine is for.  Not once, has any TSA agent ever seen this masterpiece.  But the guilt comes in here.  When my husband travels with me, he takes on a lot of the burden of carrying the heavy stuff, getting our bags up/down our stairs, helping lug everything through the airport/planes, etc. I feel bad for that, he has his own stuff to carry, and now he has double...he didn't ask for that.  GUILT.

The scenarios are many in which I feel guilty, including the above.  When I am not feeling well and don't feel up to doing what my husband or family does...GUILT.  When I have to cancel dinner plans with my best friend who is in town for a night b/c I almost coughed out my lung... GUILT.  When I forego seeing a patient because he/she has pneumonia and could possibly infect me...GUILT.  The fact that my husband and parents sacrifice so much, to help me..GUILT.  The fact that I might not be able to be a mother to some wonderful children my husband always wanted, BIG GUILT.   The fact that I can't work full-time to help support our financial situation better, BIG GUILT.  And finally, the fact that my healthcare costs are through the roof combined with the fact that I can't work full time, HUGE GUILT.

I can't help but feel this guilt, despite knowing that all of you understand, and you don't take offense to it.  I can't help but lay awake at night sometimes, feeling sorry that I brought all of this "junk" to the best relationship I have ever had.  I suppose this is all part of the process of living with a chronic condition, but sometimes it just stinks. I am reassured daily by the love my husband shows me, from the time I wake up, until he finishes rubbing my back at night, that it is okay.  That he loves me for who I am and nothing gets in the way of that.  There aren't enough words that can describe the amount of gratitude I have for my husband. He deals with a lot of things most men at the age of 32, will never have to, and he deals with it so gracefully.  And, for my parents who continue to support me, listen to my problems and push me to explore life's challenges, thank you...thank you...thank you.

Guilt comes and goes, but the feeling of loves lasts forever.

Bringing a new meaning to "relating to the patient" ...

“The bond that links your true family is not one of blood, but of respect and joy in each other's life.”

In my nursing education and career, I heard so many phrases about "relating to your patient".  Learning how to relate to my patients, has never been a challenging task for me.  From the patients who require medication monitoring, to those with more involved care such as wound care or ventilator care, one thing I am "proud" to say is that I can certainly empathize with them.  For obvious reasons, I can relate to their feelings of desperation, fear, uncertainty and need for a comforting hug and a smile.  Today, started out a normal day, rushing to get out of the house and eager to see my patients.  That normalcy, took a turn while visiting my second patient of the day...

This particular patient has a bit of a complex medical situation, but the obvious is that she requires oxygen 24/7 due to a rare lung condition called Idiopathic Pulmonary Fibrosis.  While performing my assessment, I noticed a few tears rolling down her cheeks.  Surprised, I asked her what was wrong.  That was when our relationship went from "caregiver/patient" to more of a "patient/patient" relationship.  She explained to me that just yesterday, her pulmonary doctor, told her that she would likely need a lung transplant within the next two years.  It was at that moment, my heart sank and I had an overwhelming sense of sadness.  I reached out hugged her, oxygen tubes and all, and said "I understand".

Before I could even hesitate to think twice about telling her why I understood, the words came tumbling out.  "I too, have been told I will likely need a lung transplant".  Her expression was of pure shock, she did not quite know how to respond.  Sure, I "look" healthy on the outside, but what she doesn't know is that there is a storm brewing in my lungs, waiting to erupt.  So, our usual talk about her family, food and her well-being, turned to how she felt about a lung transplant.  She was scared and felt helpless.  Two of the many emotions that rattled my brain just 9 months ago.  I remembered how lost I felt the day after my infamous appointment in October 2010, when reality hit hard.  So I did what my husband, mother and father did for me, and I was all ears and a tissue dispenser.  We talked through her fears, her options, her anxiety and helplessness.  We bounced emotions off each other life a tennis ball on the court.  And, I gave her the name and number of my wonderful doctor.

To say today was just another normal day, would be deceiving.  Instead, it was an emotional day where a bond was formed between two people who are many years apart in age, but very close together spirit.  I have met some truly amazing people working as a nurse, and I hope I never lose that touch "relating to my patients".

Mini Milestones

“Direction is more important than speed. We are so busy looking at our speedometers that we forget the milestone.” 

- Unknown

This past April and our current month of June, have significance that propel me into each day and encourage me to keep on fighting. A year ago in April of 2010, I received a call from my Doctor while I was at work.  At the time I was finishing up a close to 14 hr shift at the hospital.  When my cell phone rang, I stepped out of my patients room and answered.  It was then that I was told I needed to be admitted to the hospital, asap.  From my previous visit and lab work results, the beast was in full throttle and I again felt defeated.  In the past, I had always "known" it was about time...I felt bad enough to even suggest an admission.  This was different, I was not feeling bad, just a little more tired than usual but I attributed it to the extremely long hours at the hospital.  After a quick pity-party in the hallway of solitude, I gathered up my tears and emotions off the floor and put myself back together.  I'll never forgot those last couple of hours, where I had to focus on my patients, their pain, their discomfort ... all the while, trying to hide my own disappointment and fear, knowing that in just a few hours I would be in their shoes.  After finishing my shift, I drove home, gathered my "hospital bag", gave my kisses to my pups and my husband piled me in the car and took me to the hospital.  In a matter of a couple hours, I went from being a caretaker to becoming one of the "wounded" in the stale hospital bed. 

April was my last "tune-up", where I spent about a week in the hospital, and another two weeks confined at home with a PICC line.  Unfortunately this "tune-up" didn't go quite as smoothly as the others.  After a couple failed attempts at inserting the PICC line, "third times a charm" kicked in and they finally got a good vein.  I was sent home and soon developed severe pain which ultimately landed me in the ER.  This pain was the most excruciating pain I had ever felt, and I knew something wasn't right.  A couple hours and doses of morphine later, they determined I had a blood clot from the first PICC line (I had to ask the Dr to remove the initial PICC and place another one b/c I felt such discomfort.  So they removed that PICC against their wishes, which I later learned had caused the blood clot, and inserted a new one on the other arm).  I completed about 2 months of anti-coagulation therapy, where I gave myself shots in the stomach, took oral pills and had numerous ultrasounds to observe the size of the clot.  Over a year later, I still have sensations and visual residual from the clot.  Point being, trust your body and be your own advocate.  I had to basically beg the Dr who inserted the PICC line, to take it out.  I'll never forget when he said "we usually don't remove these just because they are painful".  I wasn't having any of that, and stated "remove the PICC line, please".  There is no telling what would have happened if I had listened to them and left the first PICC line in.

So, April was full of visits to the doctor and finally May came around and I started feeling better.  All was well, until the weekend of June 5-6th 2010.  We were in Ohio for a friends wedding and I started feeling crummy at the wedding.  We left early from the reception and headed back to our room to get some rest.  I woke up at 3am the next morning with extremely high fevers, horrible shortness of breath and breathtaking pain in my lungs.  I watched Bob sleep until I couldn't take it any more and woke him up.  We loaded the car early and I paged my doctor on the way home.  She immediately got me admitted to the hospital, and just 2 short months later I was back to being a patient.  Fortunately, I did not have to have long term therapy and they determined I had come down with a bad virus.  The first couple of days in the hospital are blurry to me, as I was in so much discomfort and on pain meds.  Bob had to travel that week I was in the hospital and my parents were out of the country.  This  was probably a blessing in disguise, because I was in such pain that I'm afraid it would have scared them to see me like that.  Icing on the cake, was when I met the "lung transplant specialist" and his entire team.  It all became very real to me, when sitting face to face with the people who might in the future help me have a second chance at life.  Discussing the possibility of having a lung transplant, when I was feeling extremely ill, made for a very emotional stay in the hospital.  

So, last year at this time I had been in and out of the hospital twice, taken a trip to the ER, developed a blood clot, battled a severe virus that took me by surprise and discussed the very real possibility of having a lung transplant.  I can't help but remember those days and on one hand feel extremely scared at how fragile this situation really is, but the other hand I am grateful that it has been a year and I am feeling relatively well. Sure, some days are good while others are more difficult.  But, I had a different mentality a year ago.  I felt invisible to this disease, like it wasn't really there or it would go away.  Since then, I have had to come to terms with my health, my lungs.  I have made a much greater effort at controlling those things that I can to help keep my health in top condition.  

Living with a chronic illness can be challenging, frustrating, debilitating and depressing.  It can also be life changing, liberating and powerful.  One can choose to take their most challenging situations and struggle, or become stronger from them.  I encourage you all in whatever challenges life throws your way, to learn from them and grow stronger because of them.  Big or small, life's hurdles and how we jump over them, make us who we are.  How high can you jump??