the spirit of generosity

The spirit of generosity. You either have it or you don't. Lucky for my family of four it surrounds us.

The last nine months have been eye opening for all of us. Was it a nightmare? At times, yes it was. Will I ever forget it? I'd like to, but no. Did I ever scream out of frustration? Absolutely. Did I ever crawl up into a ball & cry in the corner? No, that's not my style - I wasn't raised that way. What made the last nine months so manageable? What made our living with an LVAD so tolerable? Strength, love, and the spirit of generosity.

This spirit of generosity I speak of stems from our family, our friends, and our family at Cedars Sinai. It comes from our people. I have said thank you so many times. I have sat at this very computer and typed away just exactly how grateful I was for everyone's generosity. I have cried many a happy tear because I was just so overwhelmed at our people's generosity. To this day it amazes me.

This time around I want our people to hear my thanks, to see my thanks. This time around I want to spread the word about the spirit of generosity. I want my boys to know they were the force behind my strength. That I did what I had to do because Kevin is the love of my life. And that the spirit of generosity not only comes from our people but from our donor family.

The video below is for our people. It's for my boys, for Kevin, and it's for our donor family. Please share this video on twitter, on facebook, and with anyone you know. Please get the message out there that donating life DOES make a difference and by registering to become an organ donor, you DO have the power to change someone's life. And if they still don't believe you, just tell them a story about a little family of four........

LVAD exit here....

In order for you to truly understand the story of the day we "got the call"... well, I've got to rewind a couple of days......

Sunday July 3
Kevin's turn to sleep in this morning. Me and the boys in our pajamas on the sofa watching tv... I actually posted a blog entry on the morning of July 3.  Kevin wasn't feeling well, not himself. I let him sleep until just before noon. He didn't look good to me and he said he was indeed in pain. I made the call to our VAD coordinator. An hour later we were enroute to Cedars emergency room so that the doctors could take a look at Kevin. We arrive and let me just say that if you ever want to get seen quickly in an ER...show up with an LVAD'er not feeling well. People were falling all over us to get us in the door. He progressively got worse, something that could be compared to a 12 hour flu of sorts. Considering he had the LVAD and was listed as 1A on the transplant list...they kept him overnight for observation.

Monday July 4
I get the call from Kevin that he's perfectly healthy again. Must have been a little 12 hour something that hit  him really hard, he was being discharged. I arrived at Cedars by 1:30pm. One of our favorite nurses, Jimmy, was discharging us... just chatting it up and then walks over another favorite nurse of ours, Lea. I can't remember who said it but it was joked that "ha ha how funny would it be if you guys went home & you got the call to come back?" Between you & me I was laughing on the outside and secretly anxious on the inside because in three days Kevin's 30 day priority would be up and he'd be moving down to status 1B. This was probably the only discharge from Cedars that went off without a hitch. No issues at discharge. Very smooth. We were home by 3:30pm. Just in time to have family dinner with our boys. Red, White & Blue iced cupcakes for the fourth of July. Relaxing evening at home. Around 9pm my friend Gina called me from her husband's cell phone. "Hey Tracy my cell phone is dead, gotta charge it. If you guys get the call tonight, call this number or my home line." Gina is so cute... she lives the closest to us and she has family that lives close by so that when we got the call she could be to us in a pinch. She has been calling for the past couple of weeks telling me what number to call because her cell phone was dead or was being charged. She makes me smile. We were in bed by 10pm.

11:52pm my cell phone rings. I didn't look at the caller ID because I was THAT exhausted from not sleeping the night before. Here's the conversation:

Hello?
"Hi, is this Tracy?"
Yes, this is Tracy. Who's this?
"This is Brian. I'm a Transplant Coordinator with Cedars Sinai and I'm calling to tell you that Dr. Trento just accepted an offer on a heart for your husband Kevin."
You're shitting me?!!!?????!!!!
Insert Brian laughing here
I'm sorry could you say that again? KEVIN WAKE UP!! They umm, they have a heart for you..

And I handed the phone to Kevin on speakerphone. We received our instructions, he hung up the phone, and I remember us looking at each other with blank faces... Kevin said "what the fuck do we now?" And then we snapped back into reality and started frantically getting dressed, he was switching from plug to battery, and I dialed Gina. No answer on her cell phone. Kevin reminded me to call Sean's phone. Nothing. I dial again. Both of the numbers. Then the home number and left a message. (Clearly she was just as exhausted as I was that night. She was at my house the entire day prior with our boys while Kevin & I were at Cedars.) I look at my phone and dialed Kristy. Third ring and Kristy picked up...she said hello, I said hello, and she asked "did you get the...?" I said "YES Cedars has a heart!!!" She replied with "I'm coming right over" and hung up on me. We woke up the boys, gave hugs & kisses...... Kevin had a private moment with each of them and we were on our way at 12:35am on Tuesday July 5....

12:38am Who the hell stops to put gas in their car when Cedars Sinai, the top transplant facility in the U.S., calls to tell you they have a heart for you!!!??? I'll tell you who... Tracy & Kevin do... it's how we roll. As hysterical as it sounds...we never would have made it to Cedars... the gas tank was on freaking empty and in the red.

This is a reflection in the 6th floor windows at Cedars of us..
I made him stop so we could remember it forever...
second to last picture of Kevin living with an LVAD..

1:15am we arrive at Cedars, get admitted, and the transplant process begins. It really was like a whirlwind. Nurses in and out, taking blood, hanging units of plasma to reverse his INR before the actual transplant, putting in needles for IV's, sign this, don't eat or drink, sign that, and then the morning nurse shift came in. I can't tell you what a relief it was to see all of our favorite nurses from 6th floor northeast taking care of us... how fantastic it felt to see their smiling faces, the hugs, the tears of happiness ... all from the nurses who really have become our "Cedars family" ... the people that have seen us through the worst and they were here taking care of us at such a pivotal moment in this journey.

1:30pm and they were coming to take Kevin to the OR. I was allowed to walk down the hallway with them towards the OR. They were kind enough to let me come inside the door, about 15 feet in. I was told at this point I could go no further and to say my goodbye. And at that, the OR team turned around to give us a private moment.... It was for sure the kiss of a lifetime, one I will never forget. As tears flowed down our faces, we said we loved each other. As I walked out of the door, I stared at him being wheeled further away... I was standing in the middle of the 6th floor hallway, my heart was racing and not knowing if he could even hear me I yelled "I LOVE YOU KEVIN!!!" He raised his hand up and yelled "I LOVE YOU".... he heard me.

Last picture of US, living with an LVAD

3:30pm my first update from the OR: Kevin's chest was open, the LVAD was turned off and he was on pulmonary bypass. His new heart was enroute .....

4:00pm his new heart was in the building...

5:30pm Melissa, the perfusionist in the OR with Kevin..whom by the way has been with Kevin in the OR before.... she came out to give me an update... Kevin's new heart was beating on its own. My friends Claire & Gina told me I must've asked her at least 25 times if she was sure that his heart was beating on its own .... her answer was yes every time. It had been nine very long months since that had happened and I can only tell you that for the next few minutes I cried in the arms of Claire & Gina. As the tears of happiness flowed I took great joy in telling both of Kevin's parents this fabulous news. After a few more phone calls, a swig of Scotch from a flask, and a happy dance in the 6th floor hallway...I ran to tell the  6th floor nurses, saw Jimmy, told him the good news, and he shared with everyone else.

7:15pm The doctor came out to tell me Kevin did wonderful, was on his way to the CSICU, and I said thank you and gave him a really BIG hug!

From start to finish, they were by my side.

About two hours later I saw Kevin in the CSICU, still sedated of course from surgery, and it was the first time he was without the LVAD. He had color in his face. He was doing wonderful. The surgery went really well. I walked into the waiting room to see all of my dear friends that have been on this journey with us... the ones that started this LVAD journey in the ICU waiting room back in October... how wonderful to end it with the exact same people. It was, without a doubt, a moment to remember. And from that moment on...my perspective of living with an LVAD ended.

Dolly Parton

Thank you to our donor family for re-gifting life to my husband in your time of mourning.  

At 11:52 pm July 4, 2011 we got "the call." 

On July 5, 2011 my husband Kevin received his new heart. 

I am still floating on a cloud of excitement and happiness. I really don't want to come down from it just yet but when I do I WILL blog about the entire experience. I WILL blog about everyone and everything that happened that magical day.  Until then I leave you with this quote from Dolly Parton:

"If you want the rainbow, you gotta put up with the rain."

We've had nine months of rain and our freaking rainbow looks pretty fantastic right about now. 

LVAD's and 4 yr-olds

Being an LVAD caregiver is tough enough but add a 4-yr old into that equation....wait, add twin 4 yr-olds and well that's our life. I would absolutely not have it any other way. Having said that, it is nice to commiserate with other people in the same situation. Thus far I have only met one other LVAD caregiver who has a young child as well. Hey Jamie, WHOOOOOP!!

I always wondered if I was doing the right thing for our boys when Kevin was first in the hospital. By telling our boys that "Daddy's heart was sick" because they needed to know where he was. That first morning after my inlaws, Kevin's sister, and my brother were in our house...I remember someone asking what or who was going to watch the boys. My first reaction was "they're going to preschool like they have been." And so that's what I did. Figuring that keeping their lives as consistent as possible, preschool & the teachers there became our boys' "constant."The teachers barely knew me or my family (it was only one month into the school year) but they pulled together to make Kaeden & Quinton's life as normal as possible. For this, I am forever grateful to them.

Before Kevin got discharged I remember buying this book to read to our boys. "My Body" by Angela Royston and Sally Hewitt. This book helped our boys understand more about their body. Their hearts, blood vessels, lungs, etc, etc, and even has childlike drawings to help them understand better. I somehow worked "Daddy's LVAD" into this equation so that they understood "Daddy's LVAD pumped the blood through his body for him." It's a great book. If you're a parent & are new to this LVAD roller-coaster ride, get the book.

Both our boys have always been gentle with Kevin around his LVAD.....they know not to pull wires, they're not allowed to touch the PBU or his system controller. They do help Kevin change out his batteries during the day. They help him take his temperature & blood pressure in the morning sometimes. One told me recently that "Daddy has a night light all the time".... LOL he was referring to the green light that's always glowing on the system controller. They know whenever they hear Daddy's iphone alarm go off that it's time for Daddy to take his medicine. They are like this because we've taught them from the very beginning. We've been honest with them and with the help of the nurses at the hospital (before discharge), we all educated our boys.

I'm hoping Kevin and I have prepared them enough to understand the next step, heart transplant. We haven't used the word "transplant" to them but I'm certain they've heard us say it around the house. We've told them that Daddy simply needs a new heart. Naturally you can imagine the questions that followed after this statement.....One asked why? And his brother told him because Daddy's heart is sick(he said this while throwing his hands in the air out of frustration with his brother because apparently to him this was a silly question). One asked who gets you a new heart and how? We told them that Daddy's doctors take out his old one, remove the LVAD, and put in a new one. They were thrilled to hear Daddy wouldn't have an LVAD anymore.....our one son immediately cheered in excitement saying Daddy can wrestle with us when the LVAD is gone! Yes, he will be able to do that again.  Another question where do you get a new heart? insert a long pause here as both Kevin & I were stumped for a bit. Our answer.....when someone is done with their heart, then they'll give it to Daddy, but it's got to be a perfect match.

Our boys have been rather strong during this whole living with an LVAD. Tough cookies yet delicate like china our boys. They've been exposed to more than the average 4 yr-old. I think the key is being honest with them. Being as consistent as possible. Explaining things in ways that they'll understand.

In the end I'm hoping our boys remember that this LVAD roller-coaster ride wasn't a nightmare....that it was a time when friends & family came together as one to support us, to surround us with positive energy, and that Mommy & Daddy love them more than they'll ever know.

I'll end this blog entry with a recent discussion between my son & a friend of his....

K: Hey, did you know my Daddy is getting a new heart?
T: yea?
K: Yup. His doctors are gonna take out his old heart (motioning a scissor like motion up his own chest while talking), put in a new one and then he won't need batteries anymore!
T: oh.

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.