Port-A-Cath Failure

Just on schedule for November I started feeling sick. For whatever reason, November seems to be the time of year for major medical issues to arise. After a week or so of increased coughing, shortness of breath, sleepless nights, and B telling me to go to the doctor's... I did. I recieved the news I always dread, IV antibiotics!

I hate IV's because they limit me. While I do have a port-a-cath which means I can do this all at home with the assistance of a home health care nurse, I still hate it. It's a reminder of my health status, it's a reminder that one day the IV antibiotics will no longer help, it's a reminder of all things Cystic Fibrosis.

So, I proceeded to start the IV antibiotics in the clinic (first doses must be done under supervisor to monitor any reactions), 6 hours later I was able to go home with a trunk full of supplies. Doing the treatment at home requires all the things being in the hospital requires. Strict sterilization, flushing the IV line with saline between medications, lots of alcohol pads (which starts to make my house smell like a hospital), sharpes containers, etc. I also have to strictly follow the medication timelines, every 6 hours for one drug and every 8 hours for the second. Yep... waking up during the night to "hook up" to the drug. This requires full attention so I have to fully wake up in order to ensure all procedures are being done.

Approximately the second day into doing the treatment routine, my port-a-cath site started to hurt when infusing the medication and saline flush. I called the home health care nurse, who then suggested that I be seen in clinic. After a frustrating appointment with a woman who clearly had no idea how to deal with a port-a-cath, I left the clinic. The next day I was seen by another woman, who was awesome. She knew exactly what to trouble shoot for. She got me scheduled for a dye test, which includes injecting dye into the IV line which then can be detected thru xray where the dye is going. The dye should stay within the port-a-cath and then flow directly into the vein. Well, it wasn't staying within my veins but rather filtrating under the tissue, causing the pain.

Long story short my port-a-cath failed. They must remove it! The alternative to a port-a-cath is a Picc Line. I had a Picc LIne place when I was 8 or 9 years old and it was suck a tramatic experience that I refused to ever have one again. After finding out that the port-a-cath had failed I knew I would need a Picc Line to carryout the IV treatment. Well, alot has changed in 15+ years making the Picc Line procedure less tramatic or maybe I am 27 years old not 8! I was still so nervous that I asked B to take the day off to be with me. He was great! He held my hand, he reassured thru the entire procedure and even made me laugh a time or two. After all that the 2 weeks of IV treatment when well and I ended up with a fully charged battery!

Good news is that my doctor feels that because I only generally needs the IV treatment about once a year that I don't need another port-a-cath. I will have to use the Picc Line method each time I need the IV's but that much better than a permanent piece of plastic in my chest. I will have to undergo a surgery to remove the broken/failed port-a-cath but on my watch, when I am ready!


(picture of a port-a-cath)

(Picture of a Picc Line)

(Picture of a Picc Line)

~Doodlin'

Quarter of a Century and counting...

October 12th is B's birthday and this year he turned 25! So I decided in June that I would make this a year to remember, just in case. Just in case I don't live to see him turn 50. I pondered over many idea's but one in particular stuck with me.

He love's the 1920-1930's gangster era. So I started doing lots of research and found myself getting a really good education about the Great Depression. This era in American history is revoluntionary is so many ways. Women began drinking, smoking and voting. Prohibition was in affect. The FBI was founded.....

So began the idea to throw a "1930's Gangster Party" all were encouraged to wear attire reminiscent of the era.

I also wanted to blow his socks off not with just a party but a gift that he would forever remember. B recently bought the truck of his dreams. He has always envisioned himself driving this truck in his late 30's but with proper financial management we were able accomplish this dream much sooner. Because of how much he wanted this truck I knew he will never sell it.

This truck will be one of those trucks that sits in a garage or shop with the hopes of running again. He will always view this truck as his baby, his first hard earned truck. So I started researching new wheels, tires and lift kit for his F-350.

On October 10th this is what he got........

Happy Birthday B! I love you and would do anything to see you smile :)
~Doodlin'

I know... I know...

I have been so busy lately that I have not had a moment to even think about writing. August thru December always seems like a huge blurr come January.

August we were wrapping up summer with last minute biking and hiking outings all while preparing for school to once again begin.

September is full of happenings; our Anniversary is on the 3rd, quickly followed by 4 birthdays along with B's parents anniversary and lastly school starts.

October rolls in with B's birthday followed by another slew of birthdays, school is now in full swing requiring us study, take tests, etc and of course Halloween.

November slaps me in face and as I slowly come to terms with the fact the year is ending in 8 short weeks. Thanksgiving and Christmas have been and will always be a wonderful time of family and friends.

B and I both are attempting a degree in Business. While he already has his contractors license he feels its necessary to compliment it with the business aspect. I on the other hand will be a student for life. I LOVE going to school. I love walking into a new class for the first time, mind clear and ready to absorb. Seriously, if all goes well (no absentance due to CF complications) I should be done in 2 years.

For our 3rd wedding anniversary our dear friend Nate, who was B's best man, sent us to McMenamin's Grand Lodge where we exchanged vows. It was a much needed escape with my beloved husband. We played disc golf and carelessly walked around the beautiful grounds while sipping a pint of our favorite beer. Later that evening we took a tub and had a wonderful dinner. Nate simply told us when and where to go, he truly took care of everything, he even stayed at our house to watch our dogs.

Its great to know we have such wonderful family and friends in our life. The last year was extremely challenging but B and I made it thus far and we are still smiling! We love all of you who have helped us with this difficult year.


~Doodlin'

To Tell or Not To Tell....

When I decided to blog I thought it would so amazing and easy to put not only my thoughts about living with CF but my experiences in a public format. While I still believe it would be amazing, I am finding the task of opening up whole-heartedly to be difficult. I have so much running through my head and when I start to compose a blog post I find myself being incredibly conservative. Do I write the nasty details, can I properly explain the experience without the details, etc....

Well I have come to a conclusion and that is to bare all! This is my life; it is not censored, so why start now?! My intensions are to allow my readers to know both sides of the CF coin. To know the joys and the sorrows that come from it. Let's face it, life is messy.


~Doodlin'

CF is a Cruel Thief

My lungs feel sick,
filled with rancid infections
channeling through my lungs
like mud as it wallows
through the trenches
that are my airways

It leaves them wrecked
and tired from the onslaught
of persistent rage
viscous obstruction and
pus, festering as it feeds
on the energy within my soul

Leaving the battle ground
war torn and filled with craters
where pockets of life once flowed
expanding with each breath
as the air of life rushed in.

I wish for emptiness
airways free of decay
and obstruction
instead I learn to accept
the thief that is CF

Mortar begins to set
up in my lungs
making them stiff
suffocating my tissues
my body, my soul, my mind
I feel trapped
in this prison of flesh

If I could rip CF from my body
and place it in front of me
I would see it slither and ooze
a heartless and unrelenting
demon of consumption
taking its time stealing bit by bit
immune to my defenses

I still fight on
clinging to life and hope
that one day I'll know
the beast has been slain
to breathe without labor
to live without pain

Hard to imagine now
my life without such limits
not gasping for air
my lungs without scars
breathing without a care
my hopes, my dreams

CF, is a cruel thief

By James Binegar


~Doodlin'

Every Day Heroes...

In life we have people who come into our lives for different reasons and different periods of time. Each person has a purpose in our lives whether to teach us a lesson or to help us thru a difficult time; the reasons are endless. Some people stay for a few days while others stay a lifetime.

I have had the pleasure of having many people come into my life. Some of those people have faded from my life and many are still walking side by side with me thru life. Each and every person has brought something to my life that I would not have had they not been present.

In the journey of meeting, learning, supporting, caring, etc for the different individuals in my life I have learned an incredible lesson. The people who walk side by side with those who have terminal illnesses are the heroes. Many people tell me... "Kari, your such a hero, your such a great resource for the rest of the world...." but the truth is I am not. I don't have a choice. I cannot wake up each day and make the decision to have CF or not to have CF. The people who walk with me do. They wake up each day and get to make the decision to stand by me. Sometimes standing by someone like my self results in grief, heartache, anger, and hatred. These people choose to watch me suffer thru life with CF. They are the heroes! They are the ones who are courageous enough to make that decision and allow their hearts to be open.

I used to think I would never find someone who would be willing to marry me and spend the rest of their life watching me go through what I do. But I did! He is a hero in my book. He picks me up and helps me hold my head when I am weak. He makes me feel beautiful during times of despair. He is a hero.

My dear mother, there are no words to describe her strength. She is a force to reckon with. She never gave up on me. She fought when others had no hope, including myself. She never felt sorry for me, but encouraged me. She loved me thru my darkest of days, she never held a grudge, only determination. She laid by my side when I felt like I was facing my last days on earth, all the while reassuring me. She is a hero! She put all her fears, hurt, anger aside to support me as I fell to pieces. She was the one that picked the pieces up to help put me together ever single time without question. She once wrote "I would go to the ends of the earth for you!"

To all the heroes in my life. THANK YOU! My life would not be as wonderful as it is without all of you. I love you all more than any word can say.


~Doodlin'

Why I Shop!

I am sure many women will relate to this post but today seems fitting to write about my habit of shopping because I am feeling frustrated. When things in my life seem out of control, to overwhelming, stressful or simply to hard to mentally deal with I SHOP! I can tell when I am starting to feel this way because I will go to my favorite stores online and fill up my virtual shopping bag, I will even fill in my billing information but at the last minute quickly close my internet browser. I seriously will spend hours shopping online only to close the site at the last second. So needless to say the last few days I have been doing just that.

Many times I will go to a store and buy a few things, only to return them two or three days later because I feel guilty for purchasing the items. I do this even if we have the money. I do this even if I was given a gift card or money specifically for me (birthday, christmas, etc) The one and only person who can ease my feeling of guilt is my husband. If he approves; I for whatever reason feel less guilty, regardless of whether or not we have the money.

Today I broke I purchased. Things in my life have been very hectic. On top of spending the normal outrageous amount in medical expenses I had to have my wisdom teeth pulled. I will now need to have a root canal as well which dental of all medical expenses can be incredibly expensive depending on your dental plan or if you have dental coverage. Our truck needs a new windshield and our cars rear windows won't roll down. This doesn't include what's happening my professional life, while all good things, it's still very busy.

Ok I know I whinning but there just seems to be no relief. I also know that shopping doesn't help but it sure makes me feel better :)


~Doodlin'