Being Forthright & Too much Hospital

So it's been 11 days since I posted a blog update and most of that is due to the fact that I've been pretty sick and I often hide when I'm scared to death or fear that vulnerability that is really too uncomfortable to feel.

The medical:
I was in the hospital a week ( after already being in 5 weeks this year)... I had a tooth abscess that had apparently been there a long time and showed up on x-rays and was substantial enough to need to remove asap. I guess when you are immunocompromised and you have an active infection for a long time, the goal is to get it out. So i had oral surgery (6 stitches) and then a few days later another oral surgery to re-clean the bone (osteomylitis) and remove debris etc. They promised me that I'd be fine on oral anti-biotics. I'm not going to argue with Infectious diseases so we left on oral antibiotics. I went to the hospital that Friday for an IVIG infusion (6 hours) and a CT scan of my mouth. It showed cellulitis and more abscess. On Monday (7 days ago) I had a third oral surgery and the cleaning of that bone and sent home on pain meds with IV antibiotics to begin for a month. My home nurse came and we did the run through of Dorepenem (I am fine with merepenem) -- She did the infusion and stayed because it was my first time on dorepenem. The infusion ended at 9pm and I woke up projectile vomiting at 1130pm-7pm the next day, but I am lucky to have the best nurse in the world, so she came back at 730 Tuesday morning and talked to my doc. We soon understood I was very sick and needed admission. I had a bed at 330.
Nitza came with me and really took the bull by the horns there because I hadn't peed and had no tears etc from the dehydration. It was determined that my liver enzymes ALT (was 3700 (normal is 50) and my ALT was 2500 (normal is also 50)-- They got me on Zofran, pain meds (mouth) and 8lbs of fluid gain.
Good news is sed rate and enzymes have trended down down down. The ALT is 975 right now, buy I am home.  The Sed rate and pancreatic enzymes are also down... but this was the toughest hospitalization yet. They are attributing the liver enzymes to "sludge" and dehydration.

I am feeling extremely isolated. I really just want normalcy back.. running, working, liver functions near 50 etc. I feel sad and have been having panic attacks and insomnia... I guess this is a call for friends...

I'm hoping to get back to work by the beginning of July.. fingers crossed. I haven't even heard from anyone from my job and I email them regularly. It makes me sad... let's face it, everything is making me sad.

Life on the homefront is amazing. I am so lucky to have Nitza and Ale and my mom and a few friends have really stuck by me...they know who they are and I love them with my whole heart.

I go Tuesday and the following Monday for liver tests and doctor visits. I'm dreading this week a lot. Nitza will be at work all week, which is our normal... but I'm especially clingy.

I cannot wait for her parents to come on June 11, 2011... I will have company and I love them so much!!! It will be great.

I have a TON of positive things in my life... I know this is the pity train... I have a beautiful home, a beautiful spouse, who is also my best friend and someone who would do anything for me,  a lovely kiddo, 2 ridiculously troublemaking dogs, a garden and my health.. My lungs are AMAZING.. and I am really grateful for that... I'm scared about the rest, but doing what's best.

More to come this week. My little sister Erin's RN pinning is tomorrow and I am so thrilled.... I plan to get back to running this week.. but I'm going to run because Nitza does have today off and I want to be with her!!

the "e" key & and a thankful thursday

It started yesterday. my the's were th's and e was conspicuously absent from every word I typed... and you've probably gotten by now that I am a talker so that's a whole lot of e's. As a matter of fact,

The following information has been retrieved from wisegeek.com:

The most commonly used letter in the English language is the letter “e”. This is the case in the general language, in fiction and non-fiction writings, journalism, religious works like the Bible, and even in Morse code.

With “e” being so common in the English language, one would think that it would start the most words. Actually “t” begins the most words, followed by “o.” “E” is the letter which most commonly occurs third in a word, and is the third most common second letter in a word. The most common second letter in a word in the English language is h.

Actually, “e” is far down the list of English language word beginners, and comes in at the 15th place. The five most common letters beginning words are “t,” “o,” “a,” “w,” and “b.”


I miss my macbook. We are very attached. This whole macbook in the shop thing got me to think about how much I value routine and things that belong to me. I am on nitza's macbook air and all the favorites are hers, naturally because its her laptop, and I miss my favorites... all those kind of odd things.


At any rate, I'm thankful for my Macbook and that the apple store was happy I was forthright a about the incident of Ale and the Gatorade that they will try to fix my keyboard for free. No liquid got inside because I flipped it pretty darn quick.  I'm grateful for Nitza who knows me... like really really knows me  which includes the great things, the annoying things and the downright secret things I don't share... she is amazing to me and since we've been together I've never gone a day without feeling loved... or a moment for that matter... she may have put it on hold a few times when I have come home with Ale and great ideas that are really really noisy and she has a headache, but those are fewer and further between.
I'm so grateful and proud of my sister Erin who completed her last nursing school exam and she needs to be pinned and pass the boards and RN world you will welcome another wonderful loving giving nurse. I'm grateful that nitza's parents Dona Lydia and Don Carlos will be coming to visit us the second week of June... YEAH!!! I am grateful for my mom.. who I call a lot of times each day, and she answers a lot of times each day, and she talks to me a lot of times each day.--- I am grateful for S.Tom. If I were every destined for a dad, he is it. He got 4 kids when he married my mom a lot of years ago and we each have a ton of baggage and he loves us for who we are and I'm not sure he even knows we're not his blood children (shhh don't want to upset him!!)


I guess what I am getting at "e" key and all, is that I am incredibly blessed with new friends (DMM) and Old friends (KJ and HJ)... and I have an amazing family and an amazing community and the most precious nuclear family and 2 fluffy doggies. What's better?
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Not going to oral surgery today.. that's not better, but I have insurance and hell if they already went into the bone twice and need to again today, what's a third time right?


Pics will commence when I get my laptop back :(


Happy Thankful Thursday All... 

Potassium, Steroids, and Numb Faces

I have had to stop and be still so that I could remind myself that there are truly things in my life that are beautiful and that I am grateful for... these are the reasons I experience such gratitude:

and I am so very fortunate to have a great friend give me a bracelet that says "positivity". I have been looking at it A LOT today..

This hospital stay has been hard. Nitza hasn't been able to be here as often and for as long as she has in the past and I miss her to badly. But its been great in the sense that we've addressed my stomach issues with meds. My mind crushing headaches were referred pain from the horrendous mouth abscess. We found the abscess.  My lungs are rocking.. I will start running when I get out...

It's the mouth healing that is difficult and my Potassium is VERY high right now, which is dangerous for my kidneys. They are doing another draw to determine it the first draw was accurate. My kidney function had been off for most of the 2 weeks so far, but has normalized so I don't know. I am back on IV S O L U M E D R O L... i have 845 personalities on that stuff... and none of them are very nice.

Oral surgery is coming today to reassess. I am numb in my face and the swelling is going back up a little and my fever hovers near 101... but I'm no dentist so they'll have to figure it out. I do have osteomylitis  and I also have a severely compromised immune system so those two don't make for a great date.

So that is the end of my whining session. I know God is watching me. I have family and friends thinking about me and praying for me, but I'm just kind a scared.

The Cheeks Of A Chipmunk- WHAT?

This is me extremely unhappy about the the swelling in my right cheek, which is the left side of the photo for you all looking at it. I had oral surgery, as noted earlier and the pain is rough. Ice packs are my new best friend. I had a test to see if I had stones in the ole' bile ducts yesterday but I guess its like finding a needle in a haystack so they are going to wait until they are in my stomach tentatively tomorrow, pending the all important ability to open my mouth for the tube to go down.

It's been a rough time here so far. Kidney functions are too high to get vanco 2x/day. They had to take me off some meds for the kidney functions. I am a slurring drunk-sounding person when I talk with out the perks of even a sip of beer :) The pain in my back is still here when I breath, but no pneumonia on x-rays, just a lot of crackles. I've been sleeping a ton and when I'm not, I'm doing a lot of this:

which really makes me happy despite my weird outer space look.

My mom and Tom are coming today with I presume Grandma. Nitza will be around by 1 also. I cannot wait to have them all here together for the sheer hilarity of it all... plus we all love each other so much its great.

I really have nothing profound.... nothing even slightly profound... really nothing much at all, so I'll go. 

 I wish you all out there in blogworld a very beautiful Sunday.

Tara

My Shower-- Thankful Thursday

I love my home shower. It is large, walk in.. has a few seats in it. Tonight I took the longest most wonderful shower. I am anxious. I am having some difficulty breathing...I did my treatments...it is a horribly scary feeling to feel short of breath.

My heart is racing less now that I lay in my warm bed beside the love of my life with the little fluffies running around and the cutest boy asleep down the hall.

I live a life with a heart full of gratitude. I am not all better.. Dr P says my baseline will take 6 months to come back (and that's without complications.)-- I can get there.. Ask my mom, I'm stubborn as hell and incredibly impatient.

I was struck by a number of things today.. this afternoon... Ale told me that he was afraid his best buddy wasn't going to come home... he is so resilient and expressive that I never realized how much these last 2 hospital stays affected him...We're open to suggestions. He wants to visit and loves being there and flirts with Miss A and Miss M with his cute long eyelashes.. but he's still 5 and one of his parents is still ill.

I talked to my mom on the phone tonight and I was short of breath and with the most loving tone full of pause she asked me to please sit down... I thank god for my mother-- every moment.. every day.. she is my dearest friend... my trusted confidant.  I talk to her at least 6 times a day.. and sometimes that is not enough... She has been my strength..

Nitzita and I were able to openly talk about her fear.. her fright of me being sicker.. and I've been sicker and I pause and know that I spend every day and night with the love of my life...my best friend.. we laugh.. we shake our heads.. we were two fledgling souls that landed right beside one another and happened to look up at the same time... I have a life partner that I truly truly enjoy and am every day grateful for....

and so tonight, we unloaded a week's worth of Hartford Hospital bags into our freshly smelling clean home and got the boy ready for bed and read together like we do each night and as I stepped into my shower I had a moment of pause and really understood that the gift of stepping into that shower is truly what life is about.

Family Friday

I'm very fortunate. As I sit here at 4:20pm Eastern Time I am as excited as I possibly be to see my family. A and N will make their appearance in the next 1.5 hours or so...They light up my life.

She has worked a long day after a long night alone at home with a 5 year old boy and 2 dog, but she comes and she doesn't complain and she really wants to be here near me

and this boy will bombard his way into this room with such joy to look out the windows at the city that looks just like "Christmas"when it is lit up in early evening.

He'll most probably tell me about a magnificent lego creation and who brought what for show and tell at school today.. the letter was "Q"

I love them with my entire being. This weekend we are going to watch Misty Island Rescue (a Thomas movie)-- and my mom is coming to see me tomorrow and I am so lucky to have a mom that is my closest friend...

*********

I have a PFT of 51%. I have never had a PFT that low. It scares me, but what scares me more is that I am doing all the right things.  Today I started solumedrol. We'll see where that brings the PFT's... 

I am also dedicated to using this time to assessing my own happiness... am I where I want to be (not family and personal life wise) in all aspects of my life. What can I do differently... what do i want to do differently... where do I go from here... 

Until the next update folks... Thank you for reading. 

I Outrun CF- My Story.

Today is my 36th birthday.
Today I decided to check on the median age of survival of a person with CF.

The info below is directly from the cff.org

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is in the mid-30s.

I was diagnosed with CF on 9/1/2009.  I was 34.  My brother was diagnosed with CF on 9/19/1980 at the age of 14 weeks. 

What does this have to do with anything you ask?   It has everything to do with everything..  I was an elite runner. I ran 3:15 marathons. Won Olympic distance triathlon's, sprints and placed really well in 1/2 Ironman Distance triathlons... I played soccer from the age of 5 or 6 and played sports all year round. I became a runner 15 years ago or so and fell in love with it. I had chronic lung infections, upward of 5 a year. I had chronic sinusitis and a few surgeries to clear out the sinuses. 

I kept running.

In 2005, while training for Ironman Wisconsin I was clipped by a car on a training bike ride. My front brake punctured the structure of my right kidney.  I had 18 surgical procedures and eventually lost the kidney. You ask, what does this have to do with CF... I tell you-- Everything. For the first time in my life I was inactive. Between surgeries I'd get up to run again, only  to be sidelined from another surgery. After each procedure I got a lung infection. I had my kidney removed in November of 2008. I had 11 bacterial lung infections in the 9 months that followed. My nephrologist's partner sent me to a pulmonologist.

I saw Dr.C.  He asked me a lot of routine questions.. Do you smoke? NO.. Drink. Occasionally... etc etc. He went on to ask if anyone in my family had CF.. I thought it an out of the blue kind of odd question and old him my brother did, but I was CERTAIN I did not have it. He nodded his head and ordered a sweat test and labs. 

I went to UCONN for a sweat test and wrote it off as another routine test I'd have to go through after all this time and really-- I was so sick of doctors with the kidney charades... I walked out of UCONN, talked to N and my mom and said wondered what they'd do next when the CF test came back negative.

On 9/1/2009 Dr C called me and asked me to come to his office for a quick visit. I thought nothing of it. (DENIAL) I mentioned to N that Dr C called and she asked if I wanted her to come with me... I said no, she had meetings and I was sure it would be a quick visit to discuss my sputum or something.

I walked in and they were a lot nicer to me than they had been.. maybe nicer is not the right term.. they are and were always nice.. but perhaps more attentive.. did I want water or coffee... Dr C came in with 2 nurses and a pile of results. 

"I'm very sorry to tell you Tara that your Sweat Test was positive for CF, confirmed by your Ambry Genetics blood work." 

Stomach drops.. WHAT??? 

I can't have CF. Michael has CF. I do not have CF... but I do have CF.

Dr C brought Dr P (my current CF doc and ultra amazing best ever pulmonologist) in to meet me. They would start following me in the clinic and he would be my primary doc.

He went on to tell me that his theory on my specific late diagnosis is that I had spent 29 years doing my own CPT. At my peak (of at least  years) I was running 60+ miles a week. He told me that I was clearing my own lungs and that when I got in the accident all the mucus settled and I became more symptomatic.

Here we are, the 4 of us. I am the tall one with the white hat. I have CF.

I kept myself alive and healthy by outrunning cf every day. I keep myself alive and struggling to stay healthy by outrunning cf.

Every day I step on my treadmill. Yesterday was no different.

Yesterday I outran CF. N and I outran CF. We did our three miles (mine walk/run)... but it wasn't that moment (though I specifically logged my CF mileage yesterday morning for I Outrun CF)  that I realized what outrunning CF was truly about.

It was this one:

My beautiful sister and beautiful boy outrunning CF with laughter on my mother's front lawn.

It was this one:

Because I outrun CF, I can sit and enjoy my family.

And because I outrun CF, I can blow out birthday candles

with the help of this guy:

and I wake every morning to them:

and these folks

and I am blessed...and I have CF... and I outrun cf each day... which gives me another.

a photobooth saturday and working the lungs

I woke up just before four this morning struggling a little bit with my cough and the morning headache hit early today..

The pups and I spent three hours downstairs before N and A woke. It was reflective and good actually. Sometimes I just let silence hold me with no expectation.. no give, no take...just the slight reverberation of silence on my soul... which really needed it.

A came down first... he always comes down first and we played a little photobooth...

A little uncertain

Having a lot of fun

Look at my Lego Guy

Funny Faces

Kissy

Silly

Monkey

Love

Best Buddies

Where do i look?

He Told me I look like "james goes buzz buzz"

Beautiful Boy

Still a little sleepy

5 Year old A

Raspberries

7 am family Picture

and again

Today was good. I exercised, and struggled, but followed through. The puppies are home from the puppy tylenol scare so there is pure pandemonium throughout.. and their little noises make me so happy.

A and I washed and cleaned the inside of both cars, because we promised we would and we are really the root cause of the mess.

We got N her new (#5857676) dining room rug.

We played in the back yard (T ball) for a little while and interspersed in that I rested, did treatments, A played with legos and N rushed around cleaning and getting the patio furniture ready -- I know, it's early... but she's happy...

So despite my lingering infection, cough and back pain when I breathe... it was a a simple and perfect day... A said, "One of my best stay at home days ever." (That's what he calls weekends)

So I am full of a lovely god, a lovely boy, a lovely spouse, a lovely home and a hope (thank your Sara Dun for pointing that out)--- and I am going to hold on to those things and the rest always falls into place.

happy photobooth saturday morning