INR

Let me preface this blog entry by saying every patient is different. So what I'm typing here is just my side of it.  I'm in no way a nurse or doctor so what you're reading is purely from my experience or what I've been taught from our medication management training, dietitian, and VAD team. Again, every patient is different.

INR is kind of a big deal if you're living with an LVAD. I'm sure my LVAD friends know what I'm talking about here. Let me try and explain this so that our family & friends understand. And the nurses in my family will probably be proud of my INR knowledge. That's right...I'm talking to you Rete, Marie, Tina, Sharon, Cassie, and last but not least Golden Boy.

INR (International Normalized Ratio) - this is a lab test which measures the time it takes for blood to clot and compares it to an average. A patient's INR level is an important step in managing their health, especially if you're taking medicines such as coumadin. The higher the INR, the longer it takes for the blood to clot (risking uncontrolled bleeding). The lower the INR, well then the patient in most cases doesn't have adequate protection from clotting.

For us, Kevin's doctors prefer that his INR level is between 2.5 - 3.0.

INR can sometimes be the one thing that holds an LVAD patient from being discharged. I know a certain LVAD'er and his caregiver who are presently waiting to be discharged...INR is the last thing they're waiting on to be discharged.  To say they've been through a lot is an understatement.. so maybe if you're reading this, you can send them some positive vibes.  From my own personal experience with waiting to be discharged...  the god damn INR results have haunted both Kevin & I. Waiting for that magic number to be where the doctors want it...playing with the coumadin dosage...5mg one day...6mg the next.... well, you can really pull your freaking hair out waiting. And this also pertains to being home and you get a result that's too high or too low...automatically the questions begin "what's he been eating? what are his readings?" Too low for the VAD team's liking and they just might admit you. None of us want that.

I remember when Kevin first got discharged we had to go to the lab twice a week (sometimes three times) just to have his INR checked. Once he was therapeutic, where they wanted his INR... it was once a week, then once every two weeks.... after the LVAD explant didn't happen, we had to get his INR checked once a week and it's been that way ever since February. Do the doctors still play with his coumadin dosage? Over the past month...not really... just minor changes here & there.

So if you're taking coumadin I'm sure you were told by your doctors about "vitamin K?" About how it's a natural blood clotting factor that can alter your INR. I had issues with this because we're a green eating kind of family. Kevin & I have always eaten very good because heart disease runs on both sides of our families. How ironic that he of all people has heart failure, huh? Not from a blockage.... from a virus..but I'd rather not talk about that now. Back to Vitamin K... what we were told is that if you eat a consistent amount each week of greens, then to keep on doing it. They (doctors) apparently work around what you consistently eat to prescribe the right dosage of coumadin. So even though we have this knowledge...LOL...listen to this one: The night before our last clinic visit I made fried tofu with brussel sprouts, onions & mushrooms over a bed of brown rice. We hadn't had this particular dish in ages. We eat the entire thing...two helpings each. We go to clinic, the guy comes in, sticks Kevin's finger to check his INR... it was 1.8... the brussel sprouts clearly made his INR drop. "Whoops" is what we replied with... sure, it's funny now... but not really when living with an LVAD(don't want any blood clots causing the LVAD not to work properly). His INR went back up to where the doctors wanted it but I'm clearly not making any "green" dish we haven't had in a long time until after transplant.

My guess is there is a learning curve with being discharged home with an LVAD. Also the same for the caregiver... most times if a number is off or something has gone wrong...or if I forgot to do the daily test on the PBU.....or if it's 11pm & I still have to do his sterile dressing change on his drive-line....being Kevin's caregiver...well, I take it personally. Like it's my fault. Tail between my legs. I probably shouldn't because we are a team. But I do. With every clinic visit I feel as if I'm being tested. Sort of like the same feeling when our boys were infants and we had monthly pediatrician appts...you know different shots every month...I felt as if I was being tested as a mother. Like if my littler one of the twinset didn't gain enough weight....well then I'd feel responsible because I wasn't producing enough milk for him. I was obviously wrong - I was a homerun hitter in that department, he's healthy, just on the smaller side.  Maybe that's a mother thing?

I guess what I'm saying is that even though I don't have the actual LVAD implanted... I feel as if I do because I take every step with him. Then there are times when I look at him and think "holy crap. how is he doing this? how is he carrying around all the extra weight? how does he push every day to get through it?" And then I remember back to those two weeks in October...he's a fighter, he pulled through, and he defeated all odds. And then I look at our boys.... it's really quite simple. Three answers every time for all of my questions. Coincidentally they're the same three answers that get me through the every day.

Do me a favor if you're reading this...... give life everything you've got. You only get one chance at it. And if you're lucky......well, then the best doctors in the world give you a second chance. From the bottom of my beating heart, thank you to those doctors at Cedars Sinai that gave Kevin a second chance.

Donate Life Hollywood Inspire Awards

You know the other night Kevin and I had the opportunity to attend the Donate Life Hollywood Inspire Awards. (Thank you Cedars Sinai for the invite) This was an evening of celebrating the Writers & Producers that have portrayed organ transplantation/donation in a positive light. They were the ones receiving the "Inspire Award." The list of Writers & Producers from this year's Donate Life Hollywood Inspire Award winners were:

Boston Med	Season finale featuring Joseph Helfgot
Desperate Housewives	Susan's kidney storyline
Entourage	“Buzzed”
ESPN's E:60	“The Gift”
Family Guy	“New Kidney in Town”
General Hospital	Jake's organ donation
Glee	“Special Education”
Grey's Anatomy	“These Arms of Mine”
The Ellen DeGeneres Show	Tara Storch Interview
The Nate Berkus Show	The Ogbuji Family
The NFL Today	Chris Henry Feature
The 5th Quarter	Independent Film

Maybe looking at that list you've probably seen one of the episodes or if we're friends on Facebook, you may have seen the one I shared from The Ellen DeGeneres Show's Tara Storch Interview. Either way, all are, in my opinion, stories of hope.

Now, Kevin and I decided to go because naturally we support Donate Life and we've got twin 4 yr olds... a sitter was available so we jumped on the chance to have an evening out. We didn't really have any idea of what was going to happen during the evening other than people getting these awards. Upon walking towards the Avalon Theater we notice lots of people, cameras, and a red carpet. How exciting! We had the option to walk the red carpet but we chose not. (I'm thinking maybe he wants to walk a red carpet when he's nominated for an Emmy, Golden Globe, or Oscar) We go inside and settle into our surroundings, get a drink, mingle a bit, talked with a few people, we sit down, and the awards ceremony begins...

In the back of my head I was wondering why there were tissues on every table.... within ten minutes I would soon learn why....

me & my LVAD'er...on the red carpet afterwards.
 no lights, no camera, no action. just us.

The people presenting the awards were the actual people the storyline was based on, the donor recipients..... or they were the actual donor family.  Every story was touching.... inspiring.... we saw clips from the films, the television shows, & slide shows of the donor that was able to give life to someone else. I absolutely recommend you visit the www.donatelifehollywood.org and watch the films, the clips..... and while you're there why not register to be an organ donor?

You know if you're reading this and you're living with an LVAD, whether you're the caregiver or the LVAD'er, take a few minutes and visit the website or don't visit the website. BUT know that my spirits were lifted. To be there that night was for sure powerful... just being in the presence of so many inspiring families & people. I'm hoping it'll lift your spirits by watching or reading about the stories.

You should also know that it gave me more hope. It reminded me that our current situation is indeed temporary. That call for a new heart will come when the time is right......and when it does, you'll know because I'll be jumping for joy at the same time crying out of thanks to our donor family.

It's called hope people. It's called believing it will happen.

Where there is a will, there is a way.

Celebrate life. DONATE BLOOD. Rock on.

Alright so if you're friends with me on Facebook OR a part of my every day life... then you must know by now that I'm hosting a blood drive in honor of Kevin. Is this the right time to be hosting a blood drive what with Kevin as status 1A on the transplant list? Absolutely it's the right time. I've been wanting to do this for awhile but never had the time.

The blood drive I'm hosting is not just your ordinary blood drive. This is a Cedars Sinai blood drive.  You remember them, right? Cedars Sinai is home to all the wonderful doctors & nurses that saved Kevin's life. Up to speed now?

Anyway, all the blood donated at this particular blood drive will go directly to Cedars Sinai blood bank. It helps to replenish their blood supply. Remember back in October when Kevin was in surgery and bleeding out of control? ... he needed 50 + units of blood during that one surgery. The surgery following where things spiraled even more out of control, he indeed required more units of blood. I can only imagine that during his future transplant...or any transplant surgery for that matter.. that one would require more blood. I could be wrong because I'm in no way a nurse or a doctor ..... but I don't think I'm wrong in this case.

What I'm trying to say is .... by hosting a Cedars Sinai blood drive it's just another way of saying thank you to a wonderful facility by replenishing their blood supply. I have a personal goal of getting 50 donors (appointments are preferred) at this blood drive. As I type this I've already got 32 donors committed with a scheduled appointment. Of these 32 people... more than  half are donating for the first time in Kevin's honor. They are our friends who are displaying courage by donating their blood... they're doing it because they love my little family of four (that's what they told me) but also because they want to say thank you to Cedars Sinai. They all were a part of this living with an LVAD journey from the very beginning and we're lucky to have them all in our life.

Please feel free to share this blog entry on your Facebook page, tweet about it, hang the flyer up at your place of work... by doing so, it would mean you want to say thank you to Cedars Sinai as well. If you can't donate blood for whatever reason, try to get someone to donate for you. If you donate blood at this blood drive, you will receive a coupon for a  pint of ice-cream at Baskin Robbins. Pint for a pint! Cute, huh? I love it!  So, think about it. It may sound scary or you might be squeamish at the thought of needles.... but think about living with an LVAD and then if that doesn't do it for you, think about getting a heart transplant.  Hopefully you decide to join me donating blood, in honor of Kevin, the love of my life.

From the bottom of my beating heart, thank you.

Here are the details of the blood drive...

Thursday July 7, 2011
2pm - 7:30pm
20946 Devonshire Street, Chatsworth CA 91311
(just west of DeSoto inside the building)
To schedule an appointment, please email Tracy (me): donate4kevin@gmail.com
Blood donor guidelines are noted below but can be emailed as well.

Happy Father's Day...

This Father's Day is absolutely special for me. I get to celebrate my husband, who in my opinion, is the best dad ever to our little twin monkeys. Sure I'm biased but he really is.

When our twins were born, hell, even before our twins were born, he stepped up to the plate. I was on bed rest at 19 weeks due to pre-term labor. Our boys were born just 10 days shy of my due date thanks to Kevin being my caregiver. After they born he was my biggest fan, for sure. Up in the middle of the night with me. Changing just as many diapers as me. Sleep training. Stopped in the middle of his work day more than a dozen times to save me from a triple crying crisis.... the boys & me. He always has time for his boys. Even away on business trips he had time for a phone call or video chat. Playing music with them. The New York Yankees.  Introducing Star Wars (episodes 1,2, & 3 ruin it, right?). Enough said.

Almost four years goes by and heart failure happened. Insert LVAD here. It shook their world...our world.  Our boys would go to sleep at night with his pillow, his tshirts (the star wars one mommy), his jacket...just to smell him. It was indeed heartbreaking because at one point the three of us were in "mommy & daddy's bed" all sleeping together, each with something of daddy's close to our hearts. Kevin IS the glue that keeps this little family of four together. He has all three of our hearts...if only our love could repair his heart...

Remember I said I was biased? You're about to agree with me. After discharge from the hospital in November...we began our new life at home, living with an LVAD. We were determined to make it work, determined to see past the LVAD... determined to keep his spirits up so that he wouldn't give up because we NEVER gave up on him (and we never will). Kevin pushed through all the emotions...we all did... the kinks... the cranks... the ups & downs of our new LVAD ride.....and even though he is living with an LVAD, he is still & will always be the best father ever. He helps out with our boys every day. You try reading two books at bedtime & laying down on a toddler bed with an LVAD...it's not easy for me but he does it with an LVAD. Or how about putting together two big wheels on Christmas Eve with an LVAD & one arm connected to a wound vac. No matter how tired, no matter what is between him and our boys... he ALWAYS finds the time, because he is that amazing folks.

Kevin, I can't say enough about how wonderful of a father I think you are. There are so many good qualities about you but the one that shines the most is your love for your children.... you are an absolute fantastic father, more than I ever dreamed of. Our boys look up to you like no other. They need you. I need you. Thank you for fighting through the tough times.... thank you for not giving up. We just have one more hurdle to jump and we're ready to jump it with you....ready to carry you if need be....the three of us are here for you and we always will be.

So I'm just going to put this next phrase out into the universe, OK? Let's get this new heart and be on our merry way, huh?

Happy Father's Day lover....we wouldn't have it any other way......may the force be with you....

Weight/Wait

Now that Kevin is officially on the heart transplant list, I've been getting the same question from everyone "Are you going crazy waiting? Not knowing when you'll get the call?"

My answer is simple. No, I'm not.

Am I attached to my cell phone? Yes, but then again who isn't these days?

Am I anxious about waiting for the call that a heart is available for him? No.

Honestly I couldn't be more relaxed at this point. I come from a place of thanks. Upon hearing they were listing Kevin I felt this HUGE weight lifted off of my shoulders. I'm lighter. I've got more pep to my step. It might sound strange to anyone reading this but if you really think about it, you'd be relaxed too. I'll try to explain...

For those that don't know... when Kevin was discharged back in November, we were on the "LVAD explant" path. It was believed that Kevin's heart had indeed recovered. In early February when he went in for the supposed explant surgery, only about two hours of him being in the OR did our lives change yet again. We were transplant bound. His heart hadn't recovered.

We wrapped our heads around the whole being transplant bound. Went through transplant education and as most of you know, Mr. Insurance got in our way. A catch 22 so to speak was put on the table. Something was standing in our way of getting Kevin listed. It seemed rather simple in the beginning but this "something" consumed my life and became my crusade, my battle, my war. It was my job to fight to get the love of my life on that heart transplant list. I can't even begin to tell you how heavy I felt. It's almost like eating two very big plates of fettucini alfredo & an entire loaf of garlic bread. That heavy feeling in your stomach you get.....gross, right? Well that feeling was in my stomach from February until June. Four months of fettucini alfredo just sitting in my stomach. Most times I wanted to just vomit but doing that would be giving up. And well, I don't give up....I just can't... not in me...wasn't raised that way and neither was my husband.

So, when the news came that he was being listed.... it was as if all that weight had disappeared. And rightfully so, because we won. Since then, I am, as a few have told me, overly prepared for the actual moment when we get that call. Everything is in place. Even our boys are prepared. So, do you now understand how I can be so relaxed about this whole waiting part?

Like I said earlier, I come from a place of thanks. And when we get that call, when that time comes, I will still come from a place of thanks. Think about it. Someone will have had to make the decision to donate their loved ones organs in order for us to get that call. I will come from that place of thanks. I will be forever grateful.

Celebrate life. Rock on.

Simple things: part TWO

A prior blog entry of mine talks about enjoying the simple things in life. You know.. learn from yesterday. Live for today. Hope for tomorrow. Stop and smell the roses kind of simple things in life.

Last night I was given a gift. It was a set of glasses with a matching pitcher. Immediately I thought "sangria! summertime!" My evening goes on and when I get home I look at the glasses and matching pitcher. No, I didn't look at them in detail earlier in the evening because I was having too much fun. I was enjoying my company and living in the moment. Anyway, there are little writings...sayings of sorts on the actual glasses & pitcher itself. I'd like to share some of the writings with you:

    Let your spirits soar.

    Settle for more.

    Delight your friends.

    Eat outdoors.

    Cherish family.

    Feel the sun.

    Go barefoot.

    MAKE EVERY MOMENT COUNT.

    Have adventures.

    Sleep under the stars.

    Breathe deeply.

    Indulge your senses.

    ENJOY LIFE.

    Build sandcastles.

    Laugh often.

   APPRECIATE THE LITTLE THINGS.

I am fortunate enough to have my boys who remind me every day how important it is to appreciate the little things... to make every moment count... to go barefoot... to laugh often.

Recently we took a much needed "family day off" from Los Angeles. We took the boys to Legoland. It was fantastic. Not because Legoland has a new Star Wars exhibit but because we were all together. Why were we all together? Because we took the time to stop and ENJOY LIFE ....... throughout the entire day we LAUGHED and had ridiculous amounts of fun. And in our every day life we DO appreciate the little things. I absolutely encourage you to do the same. 

ROCK ON....  

"our horses vomit blood"

I have fantastic friends. If you saw us from the outside looking in, you would absolutely want to know us. I  always knew my friends were fantastic but when heart failure hit back in October.... well, each & every one of my friends, I'm talking my "core" group of friends.... they ALL stepped up to the plate for me and my family. Aww hell, who am I kidding... my friends out here in Cali are my family.

I've blogged about how grateful I was for everything they've done for me. I've talked a bit here & there about what they did for me but I've never really given details. For some reason it always manages to get me choked up. Makes me realize how lucky I really am that our paths crossed....how we were all magically pregnant either at the same time or within a few months of each other.

My friends sat with me. They held my hand. They let me put my head on their lap like a child because there was nowhere else to lay down. They cried with me. Brought me endless amounts of food/meals to the hospital AND at home. They've donated blood in honor of my husband. All the grocery shopping. They've watched our boys when I needed to be bedside at the hospital hoping Kevin would open his eyes & wake up. Preschool pick up & drop off. Distractions, my friends are great at helping keep me distracted when I would be in that waiting room climbing the walls. "Operation Gratitude." They volunteered with me, on my birthday, at "Operation Gratitude" and made tshirts as a surprise for me. Somehow they managed to get 600 "Operation Gratitude" volunteers to sing Happy Birthday to me.

My friends are all moms like me. All moms of twins or have been made an honorary mom of twins,  HM! They all gave up time with their families to be with me. To make sure me and my boys were ok. To drive me to the hospital. To come with me to the hospital & watch me put on a happy face full knowing I was falling apart on the inside.

My favorite thing about my friends are their smiles. The never-ending smiles. In a sea of unknown and sad faces everywhere I turned, I was always guaranteed a smile whenever one of them was around. A smile was all I needed to get through the day....they get me. They understand me. I am forever grateful for each & every one of your smiles.

The friends I speak of rescued me when I was drowning. If they weren't available to rescue me, they'd send their husbands...who coincidentally have also stepped up to the plate. You all know who you are. You were there that very first night and continue to be here for me now.

Did I mention that all of my friends are a part of our emergency transplant plan? I have a very long list of moms I can rely on for when we "get the call"that a heart is a match for Kevin...they have all said they'd be here for us. All of these friends, upon hearing Kevin was listed this week.... every one of them reminded me that their "ready to go" or that "my cell phone will be on when I go to bed."

To that one special friend who went back to our local hospital to make sure Kevin's helicopter took off and that there were no complications. You manage to always reassure me and guide me in the right direction.



To the friends when I tell them I'm on my way home from the hospital or VAD clinic... you tell me to relax. Take my time. The boys are fine. Get here when you get here. I am in debt to you forever for not only being my friend but for making me not worry how my boys are doing when they're with you.

To the friend who reminds me that living with an LVAD is indeed "temporary." I absolutely cherish our friendship and I am grateful for everything you do for me, Kevin, and the boys.

To the two friends that stayed overnight when I was alone. Rethinking that night, our conversation, my crying, the not knowing.......your love & support that night overwhelms me when I think about it. Still waiting for that porn :-)

The giving tree....to anyone that "gave" to our tree and continue to give to our tree...WE are forever grateful for your kindness. Each of you helped make a tough time easy.

And finally, to the one friend that spooned me when I was a complete mess....you are a part of this entire blog entry. Thinking about what to say brings tears to my eyes. You had something to do with every single thing I mentioned above. Your face always showed up at the  right time. I could not be more thankful to have you in my corner, to have you as a friend.

To all my friends, I love you.  From the bottom of my beating heart, I thank you. This blog entry is for you. For those that truly "get me" when I look at you and say "werd." And for the few friends that understand when I say.. "our horses vomit blood."

we're LISTED!!!!

As of June 2, 2011 Kevin was officially "listed."

I would absolutely categorize this moment as a "high" on our roller-coaster ride.

Yesterday afternoon I received a phone call from one of the transplant coordinators at the hospital. She told me that everything with insurance has worked itself out. We were a "go." That she would go ahead and activate Kevin on the heart transplant list. In the blink of an eye. It was that easy for her to list him. Our battle with insurance was won. 

Elated. Excited. Happy. Joyous. Scared. Nervous. Lighter. Relieved. Thrilled. All are words to describe how I was feeling at that very moment upon hearing Kevin was listed. I am beyond grateful to everyone that contributed to our battle with insurance. I will never know how to repay these people for their efforts, their time, their loyalty, their love, and their support. 

As I was laying in bed last night the only thing I could think about was love. The love that fills my body and flows through my every day. The love that gives me the strength to keep my chin up, stay positive, and to fight the fight. It's the love I have for Kevin and it's the love we share for our boys.

Kevin and I have been married for 8 years. We've been together for 14 years. Throughout these years, life has definitely thrown us some curve balls, challenges if you will. From moving cross country to family illnesses, unemployment to infertility issues, and now this. We were absolutely the underdog in each situation, but having said that, we prevailed over every challenge. Each time that curve ball got thrown our way, we always hit it out of the park.

Kevin's future heart transplant....well, I'd like to think it's nothing but a mere curve ball. The pitcher just threw it from the mound and we're standing at home plate waiting eagerly to swing the bat. For those fans in the stands, be prepared to get out of your seats. When we swing that bat, we WILL hit it out of the park and this time it'll be a walk off home-run.