Thursday, December 27, 2012

Sunday, December 9, 2012

an observation

Yesterday my little family of four had a terribly normal day. I'm in no way complaining about it, just merely making an observation. We've been living the very normal life lately and just yesterday I realized how much this makes me happy and how much our kids deserve normal.

People have always said to me that our kids won't remember a thing and boy let me tell you.... they couldn't have been more wrong. Now having said that, I hope when they get older  the painful memories of this journey are outweighed by memories of everyone that surrounded us. The family and friends that carried us, the triumphs, and the quality family time (no matter how short or long in the hospital) we insisted upon, the goodnight facetime moments, the hugs, and the life lesson that "giving up is never an option."

Back to yesterday....Kevin hung the Christmas lights up on our house. I took the boys to a birthday party at the park. We all went to Travel Town to visit the "real"Santa Claus and ride the Travel Town train. We finished the night at home with hot cocoa, marshmallows and a bedtime story of "Llama llama red pajama." You see what I'm talking about? Normal.

Looking at the picture below makes me smile inside and out. It also reminded me  about the generosity of another family. Whoever you are, wherever you are.....thank you for saying yes to organ donation. And thank you for my husband's new heart.

Register to be an organ donor today. Donate Life

Wednesday, November 28, 2012

a mother's love


On my 39th birthday, I can't help but be grateful for the woman that gave birth to me. Thank you Mom for being who you are, for loving me no matter what, for being by my side, and most of all for believing in me. Thank you for always reminding me that with a little hope and a lot of love...well, anything is possible.

You are truly the best mom ever.

Love,
Tracy






Friday, November 23, 2012

time

Time certainly goes by fast. This is becoming more apparent to me now that our boys are 5 1/2 years old. When did that happen? Just yesterday they were babies, right? Today they want to help save the ocean and their baby teeth are falling out. Kevin asked one of them last week "when did you become so grown up? Slow down a bit." My son's reply was that he couldn't because food helps him grow.

You know Thanksgiving has always been a special day. One of my favorite holidays. It feels like a fresh start is approaching. In our house two years ago, Kevin was discharged from Cedars, his first tour.  While our lives had dramatically changed and new challenges were upon us, we never lost sight of those simple things.....which brings me to yesterday's day of gratitude. A very happy Thanksgiving indeed. Sleeping in later than usual because the boys were playing quietly together. A hot cup of coffee soon followed by a hot shower with no rush to hurry up and go somewhere. The smell of my juniper brined turkey in the oven. The chance to sit and enjoy the company of good friends. Edible napkin rings. Sweet potato pie. Being together under one roof.

I hope that everyone I know and those I don't know had a Happy Thanksgiving and also had the chance to enjoy the simple things. Whatever your simple thing is, enjoy it and be grateful for that moment in time.

my little family of four

Tuesday, November 20, 2012

these guys....

It really is all about the simple things in life. He's such a wonderful father, no matter what he always takes time out of his day for them. This picture makes my heart smile. ♥ Today, I'm thankful for all three of 'em.



Monday, November 19, 2012

southern California

Is it weird that I'm thankful for southern California? Sure, I've had a love/hate relationship with where we live BUT on days like today I'm reminded why I love living in southern California. 

Presently I'm sitting outside on our patio, sun is shining, drinking French press coffee, all while watching my kids play football in the backyard. And winter is supposedly approaching? Bring it on.

Our boys were born here and southern California is the only home they know. My little native Californians, my beach lovers, actually want to learn how to surf. I love it. 

Yes, both our families might live 3000 miles away but we've been here so long that we've made friendships with people who we also consider family. Do we miss our families back east? Yes, but they understand our place is here. Besides, Apple has made it easier with iChat and Facetime to visit with our families whenever we want. 

Southern California is also home to Cedars Sinai Medical Center. It's where everyone that had a hand in saving Kevin's life works. It's where he was given a second chance at life, where so many triumphs along this heart journey were had. I am ever grateful for Cedars Sinai Medical Center. Their staff is the best of the best. 

So for today, I am indeed grateful for the choice Kevin and I made to live in southern California. 

Wednesday, November 14, 2012

two thankful turkeys

Such little kids yet so mature. They've seen so much in only a short time yet never losing sight of what was and will always be the most important in life. Family and love. Without it, none of us would have survived. Period. These two turkeys have more strength than most adults. I am so grateful that I get to see their smiling faces every day. And these smiles are thanks to a very generous family that said "yes" to organ donation. Whoever you are, wherever you are, thank you.


Tuesday, November 13, 2012

letter writing

If you're a reader of mine, you know I'm a believer in paying it forward.  For two years now a bunch of my friends and I have been volunteering at Operation Gratitude. It's a non-profit organization that sends care packages to U.S. troops deployed in hostile regions all over the world. It's a great way to say thank you to our troops. 

Here's a picture of me this past weekend. I decided to take part in the "letter writing" aspect of Operation Gratitude. You know telling the U.S. troops in each letter how grateful I was for the sacrifice they've made. Going on in my letters about how I'm able to live safely here in the states while they're serving and protecting our great nation. 

Thank you to all of our U.S. troops and Veterans. 

Friday, November 9, 2012

work

I'm probably one of the few people that can say they truly love their job. I'm grateful that I have a job. I'm grateful for the company I work for and the people attached to it locally and all over the world. 

I guess it holds true that the people you work with eventually become close to you...well, it holds true for me. I admire and respect Joanna, the woman I work for, as well as the people I get to visit on my weekly sales calls. These people, all of them, have seen me go through so many stages of my life. Milestones. From being engaged to getting married, being pregnant, watching my kids grow up, and of recent...the challenges my family has gone through the past two years. 

Once again, I'm extremely grateful for everyone related to my job. The past two years, for me going to work was an outlet. It was a welcome distraction. Were clients and friends concerned about what was going on in my life? Yes, but not once did I get a sad face. I always received a warm welcome, the if you need anything you let us know, the hugs, and by them letting me do my job, they were helping me get through it all. 

So for today and the past few days, my thanks is for everyone I get to work with, the people I get to visit on a weekly basis, the hotels and companies all over the world...because without them I wouldn't have a job. 

Tuesday, November 6, 2012

this

My son's homework was to write 1 - 2 sentences about something he was grateful for. After he showed me I instantly smiled. He told me "I'm grateful for the world cause we can travel anywhere we want. If we lived in space we couldn't go to New York, New Jersey, or Africa. And mom, I'm grateful for my family cause Daddy's new heart keeped us together."

So, today my gratitude is for this moment shared with my son. ♥


Monday, November 5, 2012

power

Do you have power yet? This is a question I asked several friends and family members back east for over a week. Actually, some of them are going on day seven without power. In the off chance my readers have been under a rock the past week, Hurricane Sandy ripped through most of the east coast and tried to knock the good people of New Jersey down. Newsflash: the strong survive and the rest get eaten. 

Power. Electricity. It's just one of those things where it usually gets taken for granted. Come home from a long day of work, walk in the house and what do you do? Switch. Turn on the lights. Then you cook dinner or maybe turn on the TV (to watch The Walking Dead), do some laundry, use the dishwasher... you get the idea. 

This is why days four and five of November are dedicated to my being grateful for power. Grateful for having power and even more grateful most of my family has it again. Electricity is indeed an amazing thing. To those in New Jersey still without it, I'm sending positive energy your way that it gets turned back on and soon. 

Saturday, November 3, 2012

modern medicine and science

Is it coincidental that on day three of November I'm grateful for modern medicine and science? Because without it, the three men in my life wouldn't be here. I'm referring to the love of my life, Kevin, and our twin boys whom I often refer to as "the monks."

Modern medicine and science has not only given me a family but it also saved my family.

can't imagine life without him.
this pic taken post heart
transplant
Let's start with Kevin. After he had heart failure his doctors implanted an LVAD, left ventricular assist device, into him. This piece of equipment, regardless of how challenging our lives were, gave Kevin that bridge to transplant. The LVAD gave Kevin nine extra months until a new heart was available for him. Of course I'm thankful for it. The LVAD is implanted in not only hundreds of others, but thousands. It's designed to basically give your heart a rest and in some cases if your heart heals, it gets taken out. In Kevin's case, it was used as a bridge to transplant. In others it's used as destination therapy, meaning people live with it for the rest of their lives. I'm not only grateful for this because it had a big hand in saving Kevin's life, but there are so many more out there still living with an LVAD.....and some of which I care very much about.

3 months pregnant with
the monks. Yes, I was huge.
Now moving on to my next point about modern medicine and science. Without it, the monks would not exist. Period. For me, I've always wanted a family. Kevin too. Naturally after we got married we started to "try." After a year of no luck and fed up with multiple idiot doctors who told me to just keep trying....we saw a fertility specialist. First doctor to give us some sort of hope introduced us to IVF, in vitro fertilization. Was it a fun process? No. Were we willing to go through it? Absolutely. Modern medicine and science is amazing. IVF not only helped us get pregnant, but pregnant x TWO. That's right, my little monks are twins. I couldn't be more grateful for IVF and our doctor who never gave up hope on us.

Back to Kevin. You all know he had a heart transplant (extremely grateful but that's another blog entry). And then that giant tumor joined our party, you know the one that caused his heart failure. Well, let me tell you that because of modern medicine and science we now know that said tumor was genetic. Modern medicine and science has given us the knowledge about this genetic tumor to protect the monks and any other family members that might possibly carry the gene.

my family of four living post transplant
Modern medicine and science folks. My little family of four is living proof  that modern medicine and science is alive and well. That moving forward is the wave of the future. That without it, the three most important men in my life, the three reasons for who I am today, well, they wouldn't exist. For modern medicine and science, I am truly grateful.


It's still there, day two

Days two of November has to do with the roof over my head. (and yes I'm aware I'm a day late on this entry but only because I started watching the very popular "Walking Dead" with Kevin recently and yes, we're addicted.)

It's very easy to take for granted the roof over your head. I'll be the first to admit that I've been there, done that. It protects me and my little family from the elements and if you think about it, the roof on your house is always there. It might leak or need a repair once and awhile but it's still there.  Having said this and after viewing the devastation that our friends and family have lived through from Hurricane Sandy... well, the roof over my head is not being taken for granted these days.

Our friends and family that lived through Hurricane Sandy still have a roof over their head. For that, I am thankful. They might not have power yet, but the roof over their head, it's still there.

For the people I know and the ones I don't know that have lost their houses because of Hurricane Sandy.... I can't imagine what you must be going through and my heart aches for you. You're all in my thoughts with hopes that your family is together and safe.  I'm hoping relief of some sort is headed your way to help you rebuild a new home.

Thursday, November 1, 2012

30 days of November

November has got to be hands down my favorite month of the year. Sure, it's the month I was born and every four years my birthday falls on Thanksgiving BUT ever since I was a little kid, I've always looked forward to November. That crisp air in the early morning, when you can see your breath in the air. It also has Thanksgiving which brings me to this blog entry, 30 days of November. 

A blog entry for each of November's 30 days, choosing only one thing to be grateful for that day. Maybe I'll elaborate, maybe not. Living post transplant is really about living

Those simple things in life really do sit in the forefront of my mind. Some days I do lose sight of the simple things because let's face it I'm not perfect and neither are you. Usually though there is something that will remind me to slow down, take a deep breath, because I can. So, for today, November 1, I'm grateful for the air I breathe freely into my lungs every day. 

Wednesday, October 17, 2012

the day I choose to remember

Two years ago today is one I'll never forget.

It was the day Lisa brought over chicken marsala casserole to our house.

The day when I clicked the button for my headset to answer my cell phone and I heard "Tracy, someone wants to say hi." A few seconds later he told me "I love you."

The only day that I actually found a parking space in P1. Elevators from P1 to Plaza Level, running across the plaza level to the Saperstein building, elevators up to the sixth floor, pressing the buzzer over and over for someone to open those double doors.

It was the day when I entered into the CSICU and I can remember all the faces. The doctors, surgeons, nurses, interns...all smiling at me. My excitement level was so high that it was deafening. I literally could not hear a thing until I turned that corner....

I walked in and there he was ........ awake.

He reached out his hand for mine and I leaned in for a kiss... it was real. I wasn't dreaming. Eleven days of the unknown were over.

He was so confused as to why I was grinning ear to ear but with tears running down my face. Speechless and in awe, I was unable to speak in those first few moments..only able to get out  "I love you."

Two years ago today on October 17 was the day I fell in love with Kevin all over again. This day is the day I choose to remember. 

Kevin, I love you with all my heart. You are and always will be the love of my life. I am forever yours.  Love really does conquer all. Together we are a force to be reckoned with. I wouldn't change a thing. And yes, we do ROCK. 

Tuesday, October 16, 2012

just a thought

You ever hear this saying: "what doesn't kill you makes you stronger"

It's taken me two years to realize there might be some truth behind this.

Monday, October 1, 2012

an honor..

Most of you that know me personally have already heard the good news. Cedars selected Kevin to be a float rider on the Donate Life float featured in the Rose Bowl Parade. Talk about honored. A great way to show anyone watching the parade that organ donation really does save lives. Click here  Donate Life Rose Parade for more details on the actual Donate Life parade float and the other 31 float riders.

Last year I helped decorate the Donate Life float for the Rose Bowl Parade. I can only imagine what it will be like to sit in the stands with our boys and watch the float go by with him on it....I'm already proud of my husband but it'll be magnified that day of the parade I'm sure. And it'll be a reminder of just exactly how lucky we were that our donor family chose to Donate Life.

Wherever you are, whoever you are, thank you.


Tuesday, September 11, 2012

can you see it?


 A fellow twin mom, Maureen, came over my house last year in June, only days after Kevin was placed on the transplant list. She congratulated us and very laughingly said that we'd probably see hearts everywhere because we were waiting for one.  I could curse her but I won't because I adore Maureen. It's really quite funny and if I hadn't taken pictures of it all, you might not have believed me....



The first instance I was making sushi at home because once Kevin was transplanted there would be no more sushi for him. Anyway, I looked down at the tuna on my cutting board and giggled. It was in the shape of a heart.


The boys came home from preschool, before Kevin was transplanted, and they drew airplanes in class that day. Quinton points out in a very excited fashion "Kaeden, the window in the airplane looks like a heart!" I gotta tell ya, I had to agree with him. Can you see it? It still hangs in my kitchen to this day. I don't have the "heart" to take it down.


I had a salt craving one night, was in the process of eating an entire bag of Lay's potato chips when I went to eat one.... yes, in the shape of a heart.

October 2011, Kevin's Heartful of Love Walk. My friend Gina finds a leaf.... yes, in the shape of a heart.

Last week, Quinton is drinking milk out of a coffee mug and yells to his brother "Look! The handle on my cup is half of a heart!" Kaeden very excitedly yells back "mine too! We go together!" And if you just started following my blog, this is extra cute because they do go together. They're twins.

Two nights ago. I was annoyed that whoever used the last of the toilet paper in the bathroom didn't refill it. I grab a new roll of toilet paper and you'll never believe it..... I saw a heart. First person I told was Maureen. She laughed and told me I should start a heart blog. Is she crazy? No but I'm not starting another blog. I'll just occasionally post my pictures of hearts here.

Can you see the hearts like we did? I guess if you can't, then, it's really all about perspective. Can you blame us for seeing hearts everywhere? Our lives have revolved around hearts for nearly two years now, both pre and post transplant. And when it all comes down to it, hearts remind me of love. Call me what you will but I believe in following my heart. I believe in love.


Tuesday, September 4, 2012

Project Thank You

It occurred to me a couple of months after Kevin was transplanted that we never finished writing our letters to our donor family. The reason? A giant tumor showed up for the party and we got sidetracked once again. Right after I volunteered at the Donate Life Rose Bowl Parade float, was when I came up with an idea. The thought that a letter just wasn't enough for our donor family.  I had to do something else.  And so Project Thank You was born.

I sent out an email to over 200 of our closest friends and family members asking them to be a part of Project Thank You. I prefaced the email with "do whatever your heart tells you to do. No one asked us to do this - we came up with the idea on our own." I told them that having recently met other donor families who never heard from the recipients of their loves ones organs, well, it saddened me. If the tables were turned I would want to know that my loved ones organs were with a wonderful family. I asked everyone to either write a thank you letter, draw a picture of a heart, draw any picture saying thank you and to only sign their first name to it. This was purely voluntary. Not all 200 people sent us something  but what we did get was indeed nothing short of amazing.

The letters started pouring into our mailbox. The pictures drawn by nieces, nephews, and even our tiniest of cousins too. It brought tears to my eyes every time I opened an envelope and there was a picture drawn in crayon that read "thank you for saving my Uncle Kevin." Or the very kind words written by a family member telling our donor family things about my little family of four.

Time went by and I'll be honest, the box filled with thank yous is still sitting in our house. I just finished my letter to our donor family and Kevin is still working on his. It was extremely hard, from my perspective, writing this letter. Our donor family choosing to donate life mixed with our new found knowledge of genetic results, well it puts a whole new spin on my gratitude. It's as if my gratitude is magnified even more. You see, our donor family not only saved the love of my life but they've potentially saved the lives of others in our family, our boys included. Having said all of this, I cannot even imagine how my husband will find the words to express his gratitude. If it was this hard for me, I cannot even imagine what it will be like for him. In time I know he will find the right words and this Project Thank You box will be on its way to our donor family.

Below is a picture that Kevin and I did with the boys. It's for our donor family. All of our hand prints....can you see the heart in each one?










Friday, August 24, 2012

The 5th Quarter

So I finally watched the film "The 5th Quarter" last night. It's been on my list of movies to watch. It's based on a true and very inspirational story that, yes, has to do with organ donation. I had no idea it was from the donor family perspective though.

I have to admit I think I really needed to see this movie. The movie was only about ten minutes in when I found myself in tears.  I won't go into detail but a tragic accident happens. And when the family was approached about donating their sons organs, the reaction was a negative one...you're not going to rip my son apart, how rude, no way......you, the viewer of this film, can only imagine what this family was going through. But in time, the mother recalls a conversation with her son when they were at the DMV getting his drivers permit. The little box regarding organ donation was staring her son in the face, he asked what it meant and the mother explained and then the decision was his to make. In the end the son, Luke, said "yes" to donating life. And with that, the family decides to donate their sons organs because it's what he decided....... and automatically that decision saved the lives (and the families attached to them) of five different people.

The movie goes on and yes I was in tears watching it because I could only imagine what our donor family experienced. The circumstances. Was it tragic? Was it sudden? Was the decision to donate life their decision to make or had their loved one already checked off "yes" to donate life. It's mind boggling and from time to time I struggle with this need to know, the want to know who our donor family is....the chance to say thank you in person.... and then there are times when I don't want to know because it truly scares me. I wonder if our donor family feels the same way?

The movie, again based on a true story, is a positive message about organ donation as well as the struggles and challenges this donor family had to overcome by losing a loved one. It shows in the end they were triumphant. Their loved ones spirit lives on not only within them but within the five people they saved by donating life. 

The Abbate Family, who "The 5th Quarter" story is about, has since started The Luke Abbate 5th Quarter Foundation. It's sole purpose is to raise awareness among teenagers & parents about the life and death consequences of teenage driving AND to raise awareness among teenagers & parents about the life saving gift of organ donation. http://www.Lukeabbate5thquarter.org/

Hopefully this post will reach someone in the younger generation, maybe they'll watch the movie, and they'll decide to check "yes" to organ donation. Maybe they already know my little family of four and are already a registered organ donor? I don't know. The point is to help spread awareness about donate life to get more registered organ donors. 20 million in 2012. Register today if you haven't already.  

Tuesday, August 14, 2012

TYDF



As I was being wheeled out of the labor & delivery department with a stressed out husband, diaper bags, twin infant carriers filled with our little bundle of joys, and a breast pump...I was shit scared. I must've looked like it too. I recall the nurse telling me to "relax, you'll be fine, go with your gut and before you know it they'll be heading off into kindergarten."

Well, that day has come and I was everything that nurse said and more. Today was the first day of kindergarten for Kaeden and Quinton. All the worry, the angst, the organizing, the how the hell am I going to do this x two.....we were fine just like that nurse told me. Our nerves may have been shot but no tears were shed from any of us. Only beaming with joy.

As I watched them walk away into separate classes I had a few thoughts running through my head...

1. Go learn. Expand your craniums.
2. I'm such a proud mama.
3. I really am the luckiest girl in the world to have them.

And my last thought was to our donor family. Wherever you are, whoever you are, thank you for donating life. Thank you for making it possible for me and Kevin to share in the joy of today's milestone, together.  ♥

TYDF: thank you donor family

Tuesday, July 31, 2012

Legoland, two visits, 14 months apart.

May 2011 visit to Legoland



The picture to the right is my family of four at Legoland in southern California.  It was taken May 2011 before Kevin was even put on the transplant list. A time that literally feels like we were in a galaxy far far away.....





July 2012 visit to Legoland

The picture to the left is us once again at Legoland but taken just a couple weeks ago. 

In looking at this picture compared to the one taken last year, I think to myself how much the four of us have grown, both physically and emotionally. The challenges we overcame and the triumphs that brought us to tears.



In a geeky Star Wars kind of way of thinking though.... In 2011 we were posed in front of the "A New Hope" Lego exhibit. Clearly hope is what we were living on. In 2012 we were posed in front of the "Empire Strikes Back" Lego exhibit, the Battle of Hoth to be exact. Yes, we battled and won with the help of our donor family....then struck back because if a failing heart couldn't stop us then a tumor wasn't going to either. 

The force is strong with my family.

Wednesday, July 4, 2012

heartbeat

In July 2006 I was about eight or nine weeks pregnant with our boys. Kevin and I went to the doctor for a routine ultrasound to make sure everything was alright and going as planned. Much to our surprise it was the day we heard both of their heartbeats. We were in awe of the little thump thump thump thumps. As I'm sure every parent reading this can absolutely relate with me when I say that the second I heard those hearts beating, I fell instantly in love twice over. 

For those that are LVAD patients or caregivers you know what the sound is when you put your head to an LVAD'ers chest. Sometimes if you're lucky you can hear the heart beating with the LVAD pumping. At night I was always able to hear the LVAD while he was sleeping. I could hear the high pitch spinning of it when Kevin entered certain rooms in our house. Our boys would always ask to listen to Daddy's LVAD and then proclaim "I hear it working. You're good Daddy."

Fast forward to July 2011, only two weeks post heart transplant. One of our boys walks into our bedroom and asks Kevin "Daddy can I listen to your new heart beating?" After the initial tears in my eyes I was lucky enough to catch it on camera. He lay there listening for about five minutes and afterwards our son was grinning from ear to ear. One of the sweetest moments post transplant. 

From time to time, our boys will ask to listen to "Daddy's heart" and Kevin's answer is always yes. I have to admit I enjoy listening to Kevin's heart beating. It actually distracts me if we're on the sofa watching TV and I'm leaning up against him...I lose sight of what we're watching and focus on the beats...thump thump thump thump.

What am I trying to say here? I think our son fell in love with Daddy's new heart just like we did when we heard his heart beating only five years earlier. 

 


Tuesday, July 3, 2012

the healing process

"Learning to live post transplant, in most ways is like healing. It all takes time."

Today is July 3, 2012.  In just two days my husband will be one year post heart transplant. While I am absolutely elated that we’ve made it to this monumental point in living post transplant, I feel like blogging about my own healing process as a caregiver this past year. 

It’s definitely been an interesting year for sure. Quick recap - One new heart. One rare tumor. One challenging arm surgery. Thirteen right heart catheterizations and heart biopsies with even more clinic visits. One patient. One caregiver. Husband and wife. Me and Kev. And the two that keep us going, our boys.

I can honestly say at most times survival mode kicked in and I became comfortably numb so to speak. No, I did not take Valium, xanax, anti-depressants, or any medications for that matter. Yes, at times I did drown my worries in the bottom of a wine bottle. Don’t  judge me. I’ve discussed this before in my blog: http://livingposttransplant.blogspot.com/2011/11/letting-go-finding-me.html Please be patient with me, I'm trying my best to elaborate.

About three months post transplant, I had to face it all. The nightmares started. Flashbacks. Everything that was ever used by a visitor in my house was thrown in the garbage. Most of my clothes started to smell like the hospital to me. Shoes brought back bad memories. All of it, garbage. Kevin thought I was crazy but my friends reassured me it was very normal to be experiencing these feelings. I didn’t know what to do with myself, with all the free time I suddenly had once again. I started working out four and five times a week, which I now know was just a distraction to facing it all head on. 

About eight months post transplant, Kevin had his arm surgery. You know, the surgery I promised would happen way back when he had his LVAD. It was a success. I mean, talk about relief, right? Well, two weeks after this surgery my boss sends me on a trip to Italy. Yes, travelling is a part of my job. I hadn’t been away for nearly 17 months. My friend Gina drove me to the airport. If you live in Los Angeles you’ll know how far it is from our house to the Balboa Blvd exit on the 101. I cried uncontrollably and hyperventilated for that long. Leaving Kevin, our boys, it was something I needed to do but was so very afraid. Death was no longer knocking on our door (knock on wood). I was in need of re-gaining my independence, my confidence, my love for travel again. Italy gave it back to me.

So there I was June 2012, thinking it was over. That the healing was over, the pain was gone. I was so very wrong. The thought of our vacation back east started to haunt me. I had this fear of seeing certain people. I feared them because we hadn’t seen them since Kevin had heart failure. I didn’t want to re-live it all again. The look in their eyes, I didn’t want to deal honestly. When we arrived on the east coast, I soon realized that my fear was ridiculous. Seeing my in laws in their house, my parents, both of our families gathering around a table, visiting our married place …and finally,  being in the state where my tough “Jersey girl” comes from…I needed it. All of it. It was all the missing link in my healing process. And I returned home to Los Angeles feeling rejuvenated and feeling like me again.

he stole my heart 15 years ago. 
In looking back at the past year I'm not sure I would have done anything different. It all had to happen, it had to be what it was in order for me to heal. Yes, certain places, people and things will spark a memory, both good and bad. Healing takes time. I must take my own advice. For now, I will continue to live in the moment, love, laugh whenever possible, pay it forward, eat guacamole whenever possible, and I will continue to live post transplant with the love of my life who makes me feel like the luckiest girl alive. 


Monday, June 18, 2012

Trust me, we know.

I always find it entertaining when we meet new doctors and nurses. The same goes for the residents, fellows and interns that follow them around. Kevin's case is for sure an interesting one.

A particular surgeon told me once that Kevin was a "walking miracle." I agreed.

Everyone within the VAD team, Transplant team, nurses, etc, all knew Kevin and his case. Nothing was a surprise. First encounter with meeting a new doctor was just about three or four weeks post transplant. I remember sitting in the room with Kevin, the doctor was reviewing his medical history, asking questions, all the normal stuff. And out of nowhere the doctor looks at Kevin and said "Wow, you were a good save." Insert more doctor asking questions here. He said it again "Wow you were a good save. I mean, a good save, ya know?" YES, we know. Kevin and I joke about this comment all the time....sure it's true but to say it over and over again to the person that was actually saved...really? Trust me, we know.

After the tumor was detected it seemed as if the crowd of doctors, nurses, residents, fellows, and interns got bigger and quieter. Like everyone had to hear what the surgeon was saying. Hanging on their every word, waiting for the next plan of attack.

Kevin had surgery on his left arm a couple of months ago (that's another blog for another day) and during pre-op all the residents, fellows and interns that were on the case were looming around his bed. You could hear them discussing Kevin's case....like we weren't in the room which I loathe... "heart transplant, wow. and a pheo too? what happened to his arm? why is he here?" Some would think they were whispering but we heard every word. Others would approach us with the "wow" kind of questions and their eyes would be lit up like they were five years old and it was Christmas morning.

Just recently a new doctor was in awe of Kevin's case, reviewed the history, and brought us back to the night he had heart failure. She said "I'm surprised they were able to get a balloon pump in you." Insert dumbfounded looks on both our faces here. She continued "Because if they didn't it would've been lights out." Insert uncomfortable laughter here. And then the doctor must've been in serious awe because her next comment was "Wow you received a heart transplant all the while having a pheochromocytoma tumor? Do you know how lucky you are that you didn't crash on the table?" After the doctor left the exam room Kevin and I both looked at each other, full knowing how lucky he was. How lucky we were. How every doctor and nurse that crossed his path had a part in saving his life.

As we approach the one year anniversary of getting the call for a new heart.....every day for us is one more day. One more day of thanks, one more day of love, hugs, kisses, and yes, even the usual wife nagging.  Putting my head on his chest listening to his heart beat on its own.....well, trust me, I know. I also know that this past year, learning to live post transplant, in most ways is like healing. It all takes time.

Thank you once again to our donor family. Whoever you are, wherever you are, you not only saved my husband but you saved my little family of four.

Thursday, June 7, 2012

Pay it forward

I guess it all stems from my childhood. Remembering the example my parents had set for me, my brother and my sister. My father was a volunteer paramedic with our local first aid squad in addition to being a full time police officer. My mother always donated her time to a variety of charities throughout my childhood. Both of my parents always helped out...whether it was organizing blood drives, raising money for a good cause or a family in need, knitting hats for babies in the NICU, cleaning up local parks...my parents always gave back. And brought us as kids with them, teaching us first hand about paying it forward. It was just something they did and continue to do today.

I recently spent a Sunday afternoon with my twin mom friends volunteering at SOVA, a local food pantry that provides free groceries to more than 12,000 individuals each month. We spent the afternoon organizing the food that was donated to SOVA into boxes, preparing them to be shipped or given to any local families that needed help. These local families include parents that don't have jobs, some homeless, families where both parents work but perhaps don't make enough money to put food on the table. You get the idea. We actually boxed over 2000 lbs of food, literally a TON.

The friends I speak of are the same friends that volunteered with me at Operation Gratitude, an organization that ships care packages to the US military deployed in hostile regions. The same friends that gave blood at the Cedars Sinai blood drive I organized almost a year ago, two days post heart transplant for Kevin. The same friends that donated over 250 children's books with me to Cedars Sinai children's ward in honor of the doctors & nurses that saved Kevin's life.

Ya know the drive home from SOVA last week really hit me. Tears running down my face. It got me thinking about when Kevin first came home with the LVAD, just a couple of days before Thanksgiving. The first thing we saw when we entered the house was a potted rosemary plant with a piece of paper attached to it that read:

"This is a thanks giving tree - planted and nourished by all of your friends. We are all so thankful for your friendship. Thankful that Kevin is on the mend and home. Thankful for life. Thankful that we can lend a helping hand. This giving tree will continue to bear fruit. You may have already received a few of its fruits in the mail, or delivered to your doorstep, over the past few days. More fruit is on its way. We hope you have a super fantastic Thanksgiving together as a family, under one roof. We love you!"

Attached to the giving tree were about two dozen gift cards to grocery stores and gas stations. And we must've received two dozen more by mail. Kevin and I didn't have to worry about putting food on the table for almost three months. It enabled us to focus on his recovery and discovering our new normal.

So on that drive home from the food pantry last week, it made me realize that my little family of four was on the receiving end of my friends' decision to pay it forward. How unbelievably grateful we were then and how unbelievably grateful we are today.

And again it all stems from my childhood. My parents have influenced me so much that doing the right thing just comes natural. I'm hoping that Kevin and I have the same influence on our boys.

So what does paying it forward have to do with living post transplant? Let's just say it's given me direction.

Wednesday, April 25, 2012

Inspiration and Hope

April is National Donate Life month. I couldn't let the entire month get by without mentioning it, now could I? 

Donate Life America's mission this year is "20 million in 2012"....meaning their goal is to register 20 million more organ donors. Believe it or not there are indeed people out there who still aren't registered organ, tissue & eye donors. Sounds ridiculous, right? Sure, because if you're reading my blog that means you either a) know me.  b) saw my blog linked on someone else's facebook or twitter page. OR c) surfed the internet looking for anything related to LVAD's, heart failure, & transplants.  Am I close? All of the above means you are/have been touched by organ donation or have sat on the sidelines watching my family of four go through the entire process. 

I recently volunteered at Cedars Sinai for a couple of hours manning a Donate Life table in front of their lobby area/cafeteria. Just asking people that walk by if they were registered organ donors, if they had the pink dot on their drivers license, or if they wanted more information on organ donation. I will say it was one of the most interesting things I've ever done. I couldn't believe how many people were NOT registered organ donors nor did they want to become one. I mean really now.... I was standing in the top heart transplant facility in the United States and these people (yes some that worked there) were NOT interested in being organ donors. Yes, everyone is entitled to their own opinion but I honestly just didn't get it.....because I had to go through it, they didn't. This is why spreading the word about organ donation is so very important. 

There are more than 110,000 people waiting for an organ, a tissue transplant or the chance to see again. Some will get that call and some will unfortunately die waiting. I've seen both ends of that play out. 

Being an organ donor saves lives. Look at my husband, look at where we were a year ago. Last year at this time I was on the telephone fighting with Mr. Insurance. My family of four was living one day at a time. Never knowing what would happen next but we were always grateful.....always grateful for each day, each breath we took and each moment we shared as a family. 

If you know someone that isn't a registered organ donor, please tell them our story of hope. Tell them that because someone checked off yes to being an organ donor, my husband has a new heart. Be kind to others. We all learned that in kindergarten, right? Be green, save a life and recycle. If you know someone waiting for that call, please tell them to never lose sight, never lose hope...because where there is a will, there is a way. 

Our story of hope and inspiration is based on my husband, Kevin. He is the heart and soul of our story. Coincidentally, he's also the love of my life. He rocks my world like no other and I've told him many times how much he inspires me. 

Recently Kevin was in San Francisco at GDC, Game Developers Conference. He's been going for years. He missed last year because he was in no condition to travel.  This year he went. At the GANG (Game Audio Network Guild) Awards, during the conference, much to Kevin's surprise, he was given the GANG Recognition Award. A friend, colleague, and one of the founders of GANG, Paul Lipson, gives a wonderful introduction to Kevin. I couldn't be more proud of my husband and also so grateful that someone else was telling him how inspiring he was throughout the past 17 months. Even more proud because he took the opportunity to talk about organ donation during his acceptance. Who knows...maybe people in that audience went home and registered to be organ donors....I'd like to think so. 

Below is the clip of my husband receiving the GANG Recognition Award:




Be an organ donor. Donate Life. Rock on people. 


Monday, March 19, 2012

It never rains in southern California....

What do you want to be when you grow up?

I was around 13 yrs old when I knew what I wanted to be.... a pilot. I wanted to join the Marines or Air Force and fly an F- 4 Phantom, or fly a commercial jet around the world. For a few years I lived, breathed, ate, and dreamt about fighter jets, airplanes,  and flying around the world. When I turned 15 my parents gave me flying lessons. It was the beginning of a dream come true. Within weeks I was flying solo. I'll never forget the feeling upon take-off. As I pushed full throttle I could feel the sweat dripping off my face and body. The Cessna 152 lifted and it was the most ridiculous feeling of freedom one can ever experience. I turned left, was downwind, then base, then final... perfect landing! An adventure for sure. Two years later, my true passion, my love for travel, well, it took over. I made the decision not to pursue being a pilot. I love my job and here I am today. For me, to travel is to live.

For those close to us, you know Kevin's sister, Lauren, is my best friend (I know I'm lucky to have my best friend as my sister in law). We grew up together. As long as I can remember I can picture Kevin with an instrument in his hand. In elementary school I played the clarinet, Lauren the violin, and Kevin the trumpet. As we grew older Kevin clearly was a musician. I remember parties where he played guitar. I remember Lauren complaining to me about how loud her brother was playing music in his room. When Lauren came home from college, I recall going to see Kevin play gigs at clubs when he was in a band. I actually recall one night eating dinner with his family (we weren't dating yet) and Kevin talking about his dream of music, it was his life. A few more years go by and by 1997 we started dating. Music was (and still is) his life. We move to Los Angeles to pursue his dream and mine further. His first orchestra session was in Seattle....I was unable to attend. I watched video of it and cried tears of happiness for Kevin. About 10 months later his second orchestra session was here in Los Angeles on the Warner Bros. lot. Our twin boys were only 5 weeks old. I drove them to see Kevin in action at the session. I was in awe, I was witnessing his dream come true. A 72 piece orchestra playing the music he composed, the music I had heard over & over again from his studio while pregnant....it was thrilling for sure. He loves his job. Music is his life.

Why am I sharing this with you post transplant? What's the relevance here folks? Encouragement. It's that easy. Our parents encouraged us to follow our dreams. That if we set our mind to it, we could achieve anything. That they were behind us 150%. No matter what.

You know one of my favorite quotes is this one: "You can have, do, or be anything you want." 

My next favorite quote I used three days post transplant:  "If you want the rainbow, you gotta put up with the rain."

On the road to achieving our goals, our dreams...both Kevin and I have had our fair share of rain to get to where we are today. The entire time our parents would hand us that "umbrella of encouragement" telling us we can do it. Never give up.

Living with an LVAD, living post transplant.... we absolutely had our fair share of rain, tornadoes, hurricanes, you name it. Our parents, friends, family, and everyone at Cedars Sinai Medical Center handed us that umbrella,  told us our situation was temporary, that our normal was just around the corner. We grabbed it and as you all know our story, we never gave up. No matter what bump in the road presented itself. It's just not the way we were raised.

So you see, no matter what your situation may be, it's really all up to you. My little family of four is the perfect example. Dreams really can come true, it's up to you to grab the umbrella. And it's up to you to believe you can do it....where there is a will, there IS a way. Giving up should never be an option. Make it happen.

Tuesday, February 28, 2012

What we know...

We get asked all the time. 

"Do you know anything about your donor family?" "Do you know where Kevin's heart came from?" 

The only information ever given to us was that the heart belonged to a 34 year old male. We don't know the circumstances. We don't know the donor family. We don't know where it came from. 

What we do know is that being an organ donor absolutely saves lives. That it saved the love of my life and father of my children. That we are without a doubt forever grateful to our donor family. What we do know is that someone said yes. 

Donate Life, be an organ donor. 

Our boys reminding you to "rock on & donate life"

Wednesday, February 22, 2012

If it's too loud, you're too old.

Music plays a leading role in my life. 

Music can help anyone through the best of times as well as the worst. It can lift you up when you're down and in some cases bring you even further down than expected. It catches you off guard and the emotions let loose, tears falling. It can help recall memories and moments that were truly unforgettable. How it makes you feel when the windows are rolled down, blaring, wind rushing through the car, and the bass thumps through your chest. When shared with another it can make the world around you seem as if it's nonexistent.

Aretha. Frank. Dean. Lenny. Scott. Michael. Elvis. Tina. John....the list of my favorites goes on and on. I absolutely have an eclectic taste in music. Before Kevin and I started dating he described me as a "house music club going" chic to most. How surprised was he when I was carrying on a conversation about Miles Davis and John Coltrane that one afternoon? Intrigued he was indeed. I thank music for bringing us together. His sister will tell you it was because of her birthday. One of our first dates was to a piano bar in Red Bank... then to listen to a jazz band play at the Downtown, which became our favorite place. I learned to appreciate music even more because of Kevin. The world of composers opened up to me. John Powell became a quick favorite of mine. How one piece of music in a movie can play on the watchers emotions. Classical music. Music performed by a LIVE orchestra.....by LIVE players... what a rush. 

The connection music has over me personally... it's overwhelming and makes me so grateful for one of the more simple things in life. The ability to hear. To be able to hear a song and it trigger a memory....I am thoroughly grateful to music, living with an LVAD and even more so living post transplant... it's so freeing. 

"Bring a nickel, tap your feet." Know the song? Whenever I hear it, I'm suddenly brought back to a time when I can see Kevin and his Uncle Robby playing it on acoustic guitar.

Music is driving over the GWB into Manhattan, listening to Frank Sinatra singing "New York, New York" telling me if I can make it there, I can make it anywhere.

It's hearing your favorite song on the radio and driving past your driveway JUST to hear the song in its entirety.

It's 18 months of bedtime nursing and singing "Glory Days" and "Leaving on a Jet Plane" to our little treasures someone once told me would never be. I'll never forget the first time they heard the actual songs....a huge smile across their faces. A connection to a song for life.

Dead Can Dance.

It's our boys listening to John Williams score from the Star Wars trilogy (that's episodes 4,5 & 6) and being able to name the scene in which the music was played. It's neat to watch them play this game with Kevin.... he's so proud when they get it right, every time.

It's the orchestral version of "Unforgettable" ..... it's our song you know. Every time that piece of music played or plays it automatically makes me feel as if we are the only two people in the room. It's quite powerful for us. 

Music gave my husband, a composer & musician, the independence and freedom he needed in his LVAD world filled with dependence and reliance.

And finally so I can get my own personal closure.....because similar to core & cardio training, blogging is my therapy. I must revisit a time with hopes it will stop haunting me. Music was my mental connection to Kevin for those 11 days that I sat in a room filled with beeps, cords, IV bags, PICC lines, medical chatter...the unknown in front of us...having only been able to barely hold his hand through surgical gloves. It was all I had to connect with him.  Metallica, System of a Down, Five Finger Death Punch, Serj Terkian, Dead Can Dance. Listening to this music, sharing a moment, whether he was on life support or not...it was still a shared moment. His awareness monitor always spiked whenever I played music to him (which was always a good sign). Fast forward about 11 months, driving home on the freeway from a routine biopsy post transplant, Kevin plays Five Finger Death Punch. I'm pretty certain I asked him to turn it off, goosebumps on my arms and a shiver through my spine while driving. Water in my eyes, yes. He didn't turn it off.... the song was War is the Answer. I remember the first time I heard FFDP...we were driving to a one night getaway in Long Beach in September 2010. Instantly fell in love with them. Two weeks later to be playing FFDP to Kevin while on life support... all the things that were happening that he was unaware of... all of the ugly stuff that only a handful of people know about...the constant question from our kids asking if Daddy's heart was better yet.... it was again like a cold shiver running through my body hearing that song, hearing FFDP period. But after a minute or two the shiver went away, Kevin put his hand on my shoulder and now blogging about it puts all the ugly behind us....... and there you have it. 

Sunday, January 29, 2012

quote

I've recently become addicted to Pinterest. I've avoided it for weeks but can't help myself anymore. The recipes, the craft ideas, and more! I've found yet another website to be distracted by.... Upon surfing Pinterest this morning I came across the quote below.. felt the need to post it here.

"You don't know what you're alive for until you know what you would die for"

This quote, so simple yet so powerful, speaks of my love for Kevin. Being in love with Kevin truly does make me feel alive....and I absolutely would die for him. There's no question about it. 

Monday, January 23, 2012

it's contagious

One of my New Year's resolutions was to always find time to play. Having said that, I will absolutely admit in the past year and a half there were opportunities to play or have fun...but we never had the time for all of them. Do I wish we had the time? Yes, BUT we were either too busy running back and forth to the hospital, on the telephone for hours fighting with Mr. Insurance, dealing with whatever challenge was presented to us, and just living day by day. Did we have moments of fun and now share wonderful memories with our boys? Yes. Did we miss out on other things because of our situation? Yes, I believe we did. Do our 4 year old twins think that? I hope not or else or I'm screwed. We just had different priorities than other families and in our case they just happened to be life threatening.  All of that behind us, we moved forward thankfully because of our donor family. 

You know I'm hoping that this blog will be a way for our boys to see what happened...see how we embraced life during a difficult time. How we made it through and show them how many people care. Ever since our boys were born I kept a journal of sorts. Writing down all sorts of things about each of them. Who walked first, Quinton. Who talked first, Kaeden. First visit to the dentist. Potty training. Whatever it was, a milestone, a word, a sentence or something we did together.. it's a journal of every day memories to treasure in the future. My last entry oddly enough was October 5, 2010 where I simply wrote: "Ms. Joanne told me that Quinton got teary eyed at lunch because he had to go to clubhouse (after care at preschool). It was one of the first times I sent you and being a working mother I felt terribly guilty about it all. Hopefully you'll understand when you get older. " We all know what happened next and so here I am blogging away. 


Back to the matter at hand.... always find time to play. Today I'm working from home. Boys are home with me. Daddy working in his studio. Raining outside. Now that's odd...rain in southern California. I told the boys to get socks on, rain boots, and a jacket. We were heading outside to jump in puddles. BIG puddles. Lucky for us Daddy was taking a short break to get coffee in the kitchen, grabbed his camera and ran outside with us. A neighbor a few doors down saw us jumping in puddles and joined in our fun. Apparently watching people jump in puddles is contagious. Sure, afterwards the three of us were drenched from the waist down but that's why washing machines & dryers were invented. 

Now if this were a year ago, Daddy wouldn't have been able to just run outside...it would've been this whole charade of sorts finding a jacket long enough to cover his LVAD, the wound vac still attached to his arm, managing the camera for a good shot, being extra careful so that he didn't get the LVAD wet......but now he can just run outside. Thank you donor family for giving my family of four this very simple moment in time, a fun memory where we found time to play. 

Always find time to play.

Wednesday, January 18, 2012

"our normal"

Everyone has their own normal, right? Life throws you a curveball and you either swing & miss or hit it out of the park. It's really up to you. Make a new normal or a temporary one for whatever the situation is at hand. 

Some might say Kevin and I are the furthest thing from normal. Poke fun at us. Tell us we're two peas in a pod, made for each other. We get each other and being ourselves is what we do best. Living the way we do, it's our normal. 

On November 6, 2010 my facebook status was this: our little family was reunited for over an hour yesterday!!! boys had a great time with Daddy...kept asking him "where do you play here Daddy?" Daddy's reply was "I'm not allowed to play." Both boys frowned & quickly said "you're silly Daddy!" LOL probably the most normal hour the four of us have had in a long time. Back then we were taking normal day by day. Trying to create a normal family life while Daddy was in the hospital. We never knew the next time the four of us would be together in the same room. As parents we did our best to make our boys feel as comfortable as possible during those visits to Cedars. Walking outside at Cedars, chaperoned by nurses who became members of our family. Sometimes we only got 20 minutes and other times we got an hour together. It was "our normal" back then. Discussing Star Wars with Daddy, singing songs, using the force to open hospital doors...again, it was our normal back then.  

When Kevin came home with the LVAD I was determined to make our home life as normal as possible. It may have taken more than a few weeks to try and figure it all out but we did. We were motivated to live each day as normal as we were allowed. If we didn't then life would've just passed us right by. We would've missed out on all those "firsts" with our boys. First time on a ferris wheel. First time on a rollercoaster. Legoland. Living with the LVAD became our temporary normal. And then transplant came which again gave us a new normal with a whole new set of rules for the first few months.

My husband is presently six months post transplant. We are doing all the normal things that every other family is doing. And last Friday night could not have been more normal. My little family of four went out to dinner. Sounds normal, right? Let me explain. One of our boys has extreme food allergies. We have to be very careful who cooks his food, cross contamination, carry an epipen, the whole deal. The only restaurant we knew that was safe for us to eat at with him was Buca di Beppo. The past year and a half we were knee deep in LVAD's, transplants, and tumors that everything else had to hold on so to speak. One of my New Year's resolutions is to find more allergy friendly places for my son to eat. To make him feel as normal as possible and that having food allergies, while a challenge, will not hold him back. 

Our Friday night dinner was at Islands. We shared a ginormous plate of french fries. Made silly faces at the camera. Made 250 trips to the bathroom because that's just what twin 4 year olds do. Enjoyed each other's company, talking about our day, laughing, giggling.... and from a distance we looked like the typical, normal American family enjoying dinner out. If you saw us and knew us....you'd know that up close and at heart we're the furthest thing from typical. We are a family of four, finally at a point where living post transplant and "our normal" has allowed us to be on the same page. 

My silly family of four December 31, 2011.