what the pft?

As most of you know, I have had a terrible year plus. My pft's hit their all time low about 8 weeks ago at an fev1 of 51%. I was sick. It took some time, but the root cause of my systemic infections and inability to fight infections was finally identified and treated.

I went today to blow pft's and THIS is what happened:

That is an FEV1 of 134%.  What???? I was whooping and hollering and happy.. because I've spent, of the last 24 months, at least 18 of them with my port accessed and some cocktail of 2 or 3 antibiotics going into my system.  For the grace of god...

We also drew liver labs and did a sputum.

This topped off a really wonderful weekend.

About 5 miles from our home is a cute little lake and it happens to be ale's favorite summer spot... we spend most weekends there as a family or with friends... this weekend we spent saturday at the lake with some friends:

Ale looking out at the water

Cuddling into his monkey towel

Nitza drinks gatorade

He's the muddy king of the lake!!

... and much to Nitza's dismay.. a tadpole.

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On Sunday we went to MA to celebrate my sister's graduation with a picnic.

Erin's Backyard

Erin and her diploma

Erin's card

Mom and Oscar

Kelly and Oscar

Oscar

Tom and Oscar

Brother Mike and his girlfriend and son

Me

Mom, Nitza and Ale

I am truly grateful for the abundance of my life.

saturday (almost) sunrise

I'm up again. This time, however, it had very little to do with sadness and a racy mind, and much more to do with the great idea I had that we have a family slumber party... we got ale a full sized loft bed to go over his bed for a few reasons... the whole "nook" effect under, having a place for grandma and grandpa to sleep, and keeping his room updated to his age.

SO, i wanted to be sure nitza or i slept in that upper bed for comfort, safety etc before ale slept there alone, so why not call it a slumber party...

and so i am awake. the five year old sundial is skinny with bony elbows and knees, but the bed was fine :)

ale rode his bike for the first time this season yesterday. it was adorable. he is a very very cautious little guy. he has always approached life that way. last year on his bike he peddled, but stayed close to me. this year, i put his helmet on him and did the whole bike safety check thing and helped him on the bike and turned to close the garage door and the boy was gone... like lightening bolt. so he gave me his "taggie" to hold and I ran roadside next to him while he peddled away in flip-flops and crazy looking hair and we were a sight to behold and it was the most beautiful 40 minutes of my day.

you don't always get what you want. you get what you need

Another day another day. I am still in the hospital with no official discharge date. It is likely to be tomorrow, but we'll see how it goes.  I was upset yesterday. I ranted and raved and cried and pretty much had a big ole temper tantrum. Today I read, rested, facebooked, texted, wrote some and behaved liked the 36 year old adult that I am. Much needed for all those around me and even those not around me.

I WAS SUPER CRAZY.


At any rate, usually each day there is something, be it lyrics to a song, a look from a person, something I witness, a comment from a friend that opens my eyes and today, dear Ronnie made a comment on one of my facebook posts that said  with regard to my lack of discharge "I know it stinks, but if you are not getting discharged, you need to be there. If you need to be there, you need to be there :)"

HELLO-- and that was it. He is right and it made a ton of sense and then I paused and asked God to help me with the battle of letting go of my will.  It's his, but sometimes (well a lot of times) I take mine back.

I have had a very relaxing afternoon -- I am okay and exactly where I need to be at this moment in time... and that's ok because it is what is supposed to be.

I'm looking forward to running a lot when I get home and getting back into my real groove and putting a marathon schedule together for the hartford marathon that will take place in October, and spending time with my family and friends, going to church, playing with puppies and loving my Nitza and Ale and Mom and Tom. I am very fortunate and grateful, though slightly stir crazy... but that's really okay.

Happier today... 

Thankful Thursday and Little Boy Haircuts

After I picked Ale up from school yesterday we went to pick up some prescriptions for me (a common occurrence... Ale and the pharmacist George, are great pals) at Target. Going to Target, as most people who know me know well, is bliss. I can never go for one thing. I have to do a full Target "walkaround" in the same order each time. So, all that being said, we got my meds and headed over to the new grocery section (which I now love but didn't at first because it was change and I really like routine --No Change). Ale and I debated the pros and cons of Welch's fruit chewies vs the Target brand... He won, as I had no solid defense for the Target brand (which I usually buy) and Alejandro is a boy that loves facts. We went to books so he could look at a lego book and a Chuggington book. I folded (I usually do) and we bought a Chuggington video. It's our first. We own every Thomas video (and engine for that matter) so Ale wanted to try Chuggington. We went by clothing and then digressed and went and bought a clipper set for his hair. The boy's hair is like velcro and for the sake of his preference I decided I would give him a cut.

We popped Chuggington into my Mac and I cut his hair. 

This is the after picture which I took today:

Pretty adorable. (I'm very biased)

These are the curls before:

We had fun and tomorrow is picture day. 

I'm feeling grateful for my family.. my Nitza and Alejandro, my mom and Tom, Kelly, Nate and Oscar, Erin, Mike and Gram...

My life is full of abundance and looking into the eyes of this boy remind me of that every day...

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...

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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. 

Back In the Hospital

I was re-admitted to Hartford Hospital today. I say re-admitted because I left here 32 days ago. Dr P-- my super fantastic Cf Doc was here to meet me along with his PA S. I'm in good hands and am confident that things will look up from here. I'm on 2 liters of O2 which has given me pink cheeks!! N and A brought me, played legos and had dinner... I am so fortunate for my family. They took a lot of blood and are testing a number of things... more to come. Today, this evening, now... I feel hope.

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.

Methylprednisolone Mornings

I've been awake for an hour. I went to bed 3 hours before that. To what do I owe the delights of such sleep you ask, a methylprednisolone burst.

9 days. I am on day 2.5. There are ants running under my skin....

I'm not normally a very willing steroid taker... I resist. I do what's best in the end, but I'll admit that I resist along the way...however, when I talked to my favorite dr p on Friday after the appointment with the immunologist and he said that we are doing a medrol burst (at least its oral as opposed to IV solumedrol)-- I said when do we start-- he paused... for more than a beat...

resistance is futile.

my pft's are in the tank.  stairs are beginning to be slightly more daunting... and i want to avoid a re-admission at all costs... so we're taking the ride... and though I'm not thrilled to be on it, I have the at-least-the-steroids-will-reduce-all-inflammation attitude.... which is good stuff...

in other news...
today, sunday, which is different than 4 hours ago, which was still saturday.... our trio (plus puppies) is headed an hour north to my mom's for the day. It's the infamous Holyoke, MA St. Patrick's Day weekend celebration (and my birthday tomorrow)--- so i will see my sister and her partner, my other sister, my brother in law (also has a birthday) and my nephew (another birthday)---- A will get to bask in the glory of my mom and Tom, who is adores and who equally adore him and we'll laugh... and the world knows that we all need that bottom of the belly rising up over the top kind of laughter sometimes to really just make it all okay...

I'll be eating carrot cake.. (it was my birthday request.. and yeah I'm turning 36, but I still like to have a cake)---

I picked up Franny and Zooey for old times sake yesterday.. and I'm happy I did.. thanks JD

Being Known

I like what Ronnie and Mandi have done with Thursdays... it gives me no excuse not to sit back and be grateful...Thanks guys...

I am grateful for words... they are oftentimes my only vehicle out of me-- my facial expressions tend to me, "Hey yeah, things are fantastic!!" .. but when the house quiets and the little boy sleeps and the dog submits to a turquoise pillow on a cozy chair across the room, I talk.

I've always been the phoenix... rising up from that proverbial ash...the survivor... the surpasser... the "life can hand her anything and she will take it and run" kind of girl...  but honestly, sometimes it's too hard to carry it, so I talk.

I turn to N and she sees it... and she doesn't say anything, but she looks at me-- she lets the silence beat past until I start talking... and she listens..  and sometimes she tries to fix it... sometimes she doesn't... she doesn't need to, but she loves me.

I am thankful for for N... for her truly unconditional love and support, for her honesty and boy is she honest. I am grateful for the little 5 year old boy with his new haircut that makes him look like an 8 year old boy, but I swear he's still 5!!

 I am grateful for my mother... who I can call one of my best friends... after years of trials---we've come out on top. I'm grateful for Tom... the only father I have known...whose intelligence and heart continue to warm us, (my trio) who he loves so dearly...

I'm grateful for E-- by beautiful sister who can laugh hard and mean it... after life had given her some tough stuff...

I'm grateful for K and N and little baby (he's almost 2) O.... I mean cute.. baby O is off the charts and his life is full of the things that mean something... raising chickens to provide eggs, working with his daddy, singing with his mommy...


I'm grateful to Mami L and Papi C... they have souls and hearts that I swear to you god put there himself...

and I'm grateful for Bella... my 8 month old Yorkie that keeps me going... and going and going and going...

I have people... close people.. people that recognize the tones of my voice and the pentameter of my speech...

It's amazing to be known.