Thursday, November 10, 2011

New blog

For those just finding this blog now.... please read about my family & our nine month journey "living with an LVAD."

 I've since started a new blog: Living Post Transplant, a Caregiver's Perspective. The link is:  www.livingposttransplant.blogspot.com

Rock on .....

Wednesday, September 14, 2011

living post transplant, new blog..

I've started a new blog... you can find me blogging about my new perspective:

living post transplant, a caregiver's perspective.

living post transplant

My first entry just posted.  Please follow me over there as I won't be posting here much longer..

Rock on....

Saturday, August 27, 2011

our LVAD family

I know I should change the name of my blog. I know. Before I do so it only seems fitting that one of my last entries under this title (living with an lvad, a caregiver's perspective) be dedicated to my LVAD besties and the LVAD families we've met both online and at the hospital.

When this whole journey started back in October I knew of no one with an LVAD. Not a soul. Which also meant I didn't know anyone that was an LVAD caregiver either.  Both Kevin and I were unable to attend VAD support groups at our hospital because they were in conflict with preschool drop-off/events. And personally speaking, our boys are our number one priority. Being there for them during a Holiday performance or watching them ride in a trike-a-thon...well, that's more important. Besides, moments like those we'll never get back. Meeting LVAD'ers in VAD clinic waiting room really never happened for us because our wait (luckily) was never that long or we were too busy being silly in the waiting room posting funny pictures of us online. :-)

Ok wait, rewind a couple of sentences. I did meet a former LVAD'er when Kevin was still fighting for his life. This former LVAD'er, Marty, is a volunteer at our hospital. He also happened to be the only volunteer that I let walk into Kevin's room in the CSICU. He must've heard from other volunteers that I didn't want to be bothered... I mean really now.. they would all walk into Kevin's room, I'd be bedside with tears streaming down my face & their opening line was "is he listed? you know I'm a transplant recipient." My reply was always "did you have an LVAD?" Their reply was always "No" and I would politely ask them to leave and I would continue crying. Was that bitchy? Maybe, but my husband was pretty much non-responsive for over a week (before & after LVAD implant) and my life was upside down. Do you think my reply was bitchy now? Back to Marty... now he was different. He had a calmness about him... he walked into Kevin's room, handed me a tissue, put his hand on my shoulder, and said "I'm a former LVAD'er and a recent transplant recipient." He won me over instantly. Made me feel like things would get better and if you know our story... things did get better. We're presently eight weeks post transplant. He was always there, always smiling, always offering up assistance during the entire LVAD experience. Day of transplant... he was one of our Cedars Sinai family members that sat with me in the waiting room. He also greets us at every biopsy appointment. Marty also volunteered to work the Donate Life table at our Cedars Sinai hosted blood drive. Needless to say, Marty holds a special place in my heart.

As time went on I searched online and found LVAD Caregivers on Facebook. FINALLY, people who knew where I was coming from. Then I found From the Bottom of my LVAD, Life with a Heartmate 2. Then LVAD Friends. Finding these groups was such an eye opener for me. Such a relief to be able to post a question, thought, worry, or a problem and know that I WASN'T alone. From the very beginning there was never anyone who knew what we were dealing with at home on a daily basis. So, understandably, for me, finding these groups was like finding a pot of gold at the end of a rainbow.

Through these outlets I was able to make some wonderful friendships, meet some wonderful caregivers as well as LVAD'ers. We all have different backgrounds, different hospitals, all unique situations, and different challenges with one thing in common.... the LVAD (left ventricular assist device). Each LVAD'er is amazing and their caregiver just the same. I've seen some go from LVAD to transplant (just like us), seen them go through pump failure, infections, triumphs, those still waiting for their call, those that choose the LVAD as their destination therapy, and very sadly have also seen some lose their battle.

Each of these wonderful people have opened their hearts and their LVAD pumping hearts, to me and my husband. From the moment I would post onto each group page someone was always there reading, listening, and replying to my every worry. They were there when we got the call and they continue to be there now because we've grown so close. I'm sure I've said thank you to these LVAD'ers, their caregivers, and our LVAD family...but I'd like to do it just one last time via my blog....

Thank you LVAD Caregivers, From the Bottom of my LVAD, Life with a Heartmate 2, LVAD Friends and to those LVAD families at our hospital. While I wish I would have found you earlier...I certainly am glad I found you when I did. Your support and love at every hour of the day will never be forgotten. From the bottom of my heart and Kevin's new one...thank you.

To my LVAD besties......my Steel Magnolias.....the core of our LVAD family....you know who you are. Thank you very much for being you and letting me be me. Thank you for understanding when I vent, for crying along with me, and for cheering me on when I needed it most. I cannot wait until the day we're all sitting around the same table eating a piece of that armadillo cake laughing about anything & everything.

Saturday, August 20, 2011

the first six weeks....

The first six weeks. Phew....that was quick.

After the initial "WOW this has really happened" and "we really are the luckiest people alive" reactions... then set in post transplant life. I gotta tell ya it's much easier than our discharge home from living with an LVAD.  (and speaking of living with an LVAD... I've gotta change the name of my blog now, don't I?) 

Let me preface this all by saying I'm still enjoying the high of Kevin being transplanted. I guess I'll come down sooner or later but it's kind of a nice ride.....so for now, I'm going to keep on enjoying. 

Kevin was transplanted on July 5. He came home eight days later, July 13. No attachments, no plugs, no batteries, no LVAD. I had gotten rid of all LVAD evidence in our house before he came home. Donated the PBU, battery charger and batteries back to the hospital. Donated our VAD supplies to another LVAD'er in need. Shower bags, vest, everything...gone.  We replaced it with new medication, anti-reject medication, more dressing supplies, and an entire binder of do's/don'ts for a fresh transplant patient. Oh forgot to mention inside the binder was a schedule of appointments for the next year. Organization. I like it.

Wondering why more dressing supplies? The day after his transplant I remember the CSICU nurse saying to me "oh I can show you how to change his dressing." My head spun around so fast you'd think you were watching that pea soup scene from The Exorcist. Sure enough there was a freaking hole right where his LVAD drive-line wire went through. The very same site that I had to previously do daily dressing changes on in our LVAD days. So, I referred to it as the LVAD hole. Doctors at our hospital wanted it to heal from the inside out. I can safely tell you that six weeks later it is healed. Goodbye sterile gloves & Iodoform.

Kev's cocktail of pills
The medications. In transplant education we were told that since Kevin was living with an LVAD, we were already pro's at "medication management." It's really only a few more pills to take per day and honestly it seems easier this time around. Sure, we had to learn the generic & brand names of all the new medications....the side effects.... but we did the exact same thing when we came home with the LVAD. It's quite a colorful cocktail of pills he has to take twice a day. Honestly, I don't know how he does it...my husband makes it look so easy. But then again, I'm looking from the outside in...this blog is my perspective, not his.

Kev in the waiting room at clinic
The organized binder of do's and don'ts. While it was quite a lot of information to take in, it wasn't a surprise to us because we had been through transplant education back in February...and the transplant team did a great job of preparing us. No sushi. No alcohol. All of his food MUST be prepared well done. No swimming in pools just yet (but he can get wet, splashed at, & even give the boys a bath now). He can't go into crowded places for the first three months (it's not recommended by the doctors). Whenever he goes out, is at clinic, or the hospital...he must wear a mask. It's for his own good during the first three months. Our kids think it's great that Daddy gets to wear a mask. They actually made Daddy a paper mask, colored it and everything....so cute. Honestly, living with a post transplant patient is similar to bringing home newborn twins. Doing our best to keep those with germs away and Purell is everywhere in my house. We joked with people saying we were going to have one of those decontamination showers outside our front door just to be safe. We joked that I would put him in a bubble. But then again, he joked about the same thing when I was pregnant. Our souls were meant for each other.

A year of scheduled appointments = organization in my book. At least we know where we've got to be and when, right? I can prepare ahead of time and get babysitters, plan my work days around these appointments. The first month Kevin had one biopsy a week and clinic twice a week. He tells me that he's awake during biopsy. That during the biopsy he can see the doctor taking a piece of his heart. I remember a Facebook status of his "headed to biopsy where they're taking a little piece of my heart now baby." Post transplant, I am even more impressed with my husband's ability to go through all of this and still smile. Sure, he's been re-gifted life...but biopsies can't be THAT much fun, right? We are in the second month where biopsies & clinic are every other week. Once we hit September, once a month. Where has the time gone? Wasn't I just bitching about not being listed only a few months ago? Clearly I am a lucky girl....
celebrating Daddy's birthday

I'd like to just touch on the emotional part of living post transplant. The first six weeks were a cloud of excitement for sure. It hasn't been all peaches & cream though.  That LVAD hole gave us some issues once where it decided to goooosh blood during one of his biopsies (all was fine with a little pressure applied). Those new meds, the anti-reject meds to be exact, have an entire schloo of side effects....some that you just have to learn to deal.  Cabin fever...not being allowed to really "go" many places until he reaches that three month mark. So while we did have our moments where the roller-coaster dipped low,  it eventually came back up to that high of enjoyment. The first six weeks were clearly an adjustment period...just like when we first came home with the LVAD. But it all comes down to working together, figuring out how to make it work, being the team that we are.... and living each day to its fullest.

The first six weeks seem to have gone by so fast. Now that my family of four is getting closer to approaching "our normal" I am reminded that we still have one more hurdle to jump....his left arm and hand. Ya know until he gets more function back in that left hand or until a surgeon gives him that little bit of good news he's looking for.......my husband has a daily reminder of this entire heart failure experience. He has a daily reminder of what happened during those two weeks of his life that he missed. For me, I am here to make certain he gets it back. Because folks let me tell you, where there's a will, there is always a way. 

Tuesday, August 16, 2011

reflection

We are six weeks post transplant. Kevin is doing fantastic. Right where he should be. No rejection. No infection. My last blog entry was almost three weeks ago. I'm still floating on that cloud of excitement....still riding that high....enjoying each moment of normalcy that comes our way no matter how big, no matter how small. I've earned it and so have the three loves of my life. Post transplant blogging to follow. For now, this picture....

This picture here is a powerful one for me. It was taken by my friend Claire on the night Kevin received his new heart. All the hands are wearing "donate life" bracelets. All the hands belong to my dear friends, my twin mom friends. All of these wonderful women were with me in the hospital. My other twin mom friends were with our boys.

Every time I stare at this picture I absolutely start to tear up. It embodies all of what my little family of four has been through these past 9+ months. It represents the hope, the love, and the unity that carried us through.

Today, I met up with a few of these twin mom friends, kids included, at a local park. Had a great time. Lots of laughing, giggling, eating, talking, yelling, crying because someone was throwing sand or someone was not sharing....you know, normal toddler playdates. All in good fun. As I was leaving I realized this was the first playdate in a long time where there was no immediate crisis looming over me or my family. No real rush to get anywhere. I reflected on the days where I really tried to have a good time but couldn't because I was so worried about Kevin or needed to pick up medication, or just needed to be in ten places at the same time. Not today. It's as if someone has pressed play on my life again. As if we were put on pause. And then when it really was just the four of us again, someone pressed play.


Thursday, July 28, 2011

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........



Friday, July 15, 2011

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.

Friday, July 8, 2011

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. 


Sunday, July 3, 2011

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.

Sunday, June 26, 2011

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.

Saturday, June 25, 2011

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.

Monday, June 20, 2011

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.



Sunday, June 19, 2011

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....

Sunday, June 12, 2011

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.

Tuesday, June 7, 2011

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....  



Saturday, June 4, 2011

"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."


Friday, June 3, 2011

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. 

Tuesday, May 31, 2011

"what's that?"

So, living with an LVAD we get all sorts of questions, stares, looks, from everyone and everywhere we go. I mean if you don't know what an LVAD is, what the LVAD gear looks like, or know Kevin personally....then, you probably would look at Kevin with his gear & wonder "what's that?"

He gets the question from the people who are curious enough to ask. One time in the movie theater the lady behind the counter pointed at the system controller and said "hey, is that one of them there ab things for exercising?" Caught off guard Kevin and I giggled, he looked at her and replied "no, it's actually an LVAD & it's pumping the blood through my body." She seemed mortified but smiled, handed us our popcorn & we carried on with our evening.

We had to go to the ATM one afternoon. I pull into the parking space and Kevin gets out to use the walk up ATM. I notice as Kevin is using the ATM that the security guard for the bank is staring at Kevin...I mean really staring and getting closer to him. He didn't approach Kevin to ask him anything but he was definitely "eyeing" him up as if he looked suspicious. My guess is that this security guard has never seen someone with an LVAD and maybe he thought Kevin was packin' or something. He stared at Kevin his entire walk back to the car.

Walking through CVS pharmacy with Kevin.... a woman walking by us very rudely points at his LVAD gear and asks "hey is that a pain pump? I had one of those too." We shook our heads no and then as we're trying to explain what it is....she's walking away. Why ask if you're not going to listen to our answer? Oh right she was "assuming" and being rude. Two things in life I loathe...people that assume and people that are rude.

Then there are the genuinely curious people.... the ones that upon hearing our reply will get even more interested and wish us both well.

And yes, a couple of people have said "hey Dick Cheney has one of those." Yes, he does but I'd like to think he's NOT the poster person for LVAD's.

This pic was taken in January.
Kev is wearing the LVAD vest
which encases the batteries at either side
and system controller on his belt.
I've attached a couple of pictures for everyone to see what the LVAD gear looks like. This way, if by chance you're walking through a store or on the street and you see someone wearing something similar... you already know, they've got an LVAD.... and most likely their story is probably just as emotional  as ours. Flash them a smile....... my mother always told me a smile goes a long way and it can definitely change your mood. My father always told me to smile because it'll make people think you're up to something. He's more of the comedian in our family. Smiles are indeed contagious...and personally speaking, I smile a lot because I've got nothing to be sad about. I've got a wonderful husband, healthy beautiful children, great family, and fantastic friends. I am a lucky girl. And I'm a thankful girl because without that LVAD I wouldn't be blogging about this right now.

Here is my very handsome husband enjoying himself at a recent block party.
As you can see, what might look like a fanny pack is really his "system controller."
If you look closely you can also see one of the batteries which are on both his sides at hip level.
The system controller & batteries are attached to his jeans and/or belt loop here.




Here's Kevin wearing a "tactical shirt," worn by military or undercover police.
It's a great shirt because the pockets are meant for firearms but in Kev's case, they're perfect for LVAD batteries!
(system controller attached on jeans)

Monday, May 30, 2011

Lotsa Helping Hands

I'm not really one to endorse anything in particular but being an LVAD caregiver and the fact that I'd like to thank Susie yet again for setting this up.... I've got to give props to LHH, Lotsa Helping Hands. 

Probably about day 2 into it all back in October, Susie pretty much took the bull by its horns and set up a "Riepl Family Community" via Lotsa Helping Hands for us. I remember her going through my iphone contact list but not really recalling what it was for. She was talking with my brother, Gina, Chad, Kevin's sister & his parents about their contacts & how to invite them into said community.  I realized about two days later what she had done was nothing short of amazing. For this I'm grateful.  

Let me explain what Lotsa Helping Hands is all about. It's a free, private, web-based communities for organizing friends, family, and colleagues during times of need. It easily coordinates activities and manages volunteers with a group calendar. If you are caring for someone in crisis, or going through one yourself, chances are you have heard the question "what can I do to help?" By using Lotsa Helping Hands, everyone knows what to do and when to do it. Energy is spent helping, not scheduling. 

Here is a link to Lotsa Helping Hands:  https://www.lotsahelpinghands.com/

Like I said, Susie set this all up in the blink of an eye. At one point I remember her working a laptop, my iphone, and hers. She's a woman, she knows how to multitask. Enough said. Again, I'm grateful she did this for us. She assigned "coordinators" to specific people in our families so that when someone would request to be a part of the Riepl Family Community, a coordinator could confirm them. Once confirmed you'd basically have access to our inner circle of what was going on with Kevin as well as helping me & the boys out. 

The task calendar would have things on there like grocery shopping, airport pickups, airport drop offs, hospital drop offs, and bringing meals to us. Can I tell you that literally in the blink of an eye, we had friends volunteering to bring us meals for two months straight?  For once in my life I was speechless by the overwhelming love & support from our second family...our California family.  You all rock and you know it. To my "core group of friends" that continue to help us on a daily basis...you know who you are...I am grateful and we DO appreciate your help. 

LHH was also a good way for us to communicate to the masses. We could let friends, family, & colleagues know what was going on in one simple email. In the beginning I was not doing the updating because I had too much on my plate. Too much to worry about. Kevin and the boys were my only focus. As things progressed, Kevin woke up, and the boys got to finally visit Daddy at the hospital, he got discharged.....I was doing the updating. 

To this day I still do the updating. Honestly I haven't updated in over a month simply because there isn't anything to update about. I will tell you that once we get listed, once we get "the call" that a heart is available for Kevin, .....if you're not a member of the LHH Riepl Family Community...well, you might be left out then. I say this because LHH will be my way of communicating to everyone once again....because it will be easy....because I will be living at the hospital with Kevin & then back at home with the boys along with getting more in depth transplant education. Are you following me? Sure, I might post a thing or two on facebook but I won't go into detail......and I would hope that any member of our LHH community would keep the "details" to themselves.  I'm not being bitchy but just this time around I have to make sure everyone involved has my husbands best interest at heart, no pun intended.

To Susie and to anyone that volunteered on the LHH Riepl Family Community....You continue to overwhelm me with your love and support. It means the world to me, to Kevin, our boys, and our families. Your kindness will never be forgotten. We treasure your friendship. I am in debt to you forever and I love you all dearly. 

From the bottom of my beating heart, thank you......

Tuesday, May 24, 2011

being a caregiver/advocate

advocate: to speak or write in favor of; support or urge by argument  
caregiver: a person who cares for someone that is sick or disabled

You know, before Kevin left the hospital back in November, I had to undergo LVAD & caregiver training at the hospital. The nurses and the VAD team were my teachers.  Naturally I aced. Kevin's parents and our friend Chad took LVAD training. Anyone that got LVAD training after November (my parents & other friends) was trained by me, since I'm an expert. :-)

Part of the LVAD training is to know what to do in the event Kevin has heart failure again. Yes, folks the LVAD is not 100% fool proof, things can go wrong. Hence the training.  One of the things is if you're with him when this happens you need to be Kevin's advocate. Stay by his side, alert paramedics that he has a Heartmate II LVAD, alert them not to do chest compressions (it could kill him), and to call the LVAD pager ASAP.  I  worry about this all the time when I'm not with him. I worry that whoever he is with if they are good in an emergency situation, if they are quick on their feet, if they'll be his advocate in my absence. If they're not, then well, they'll have me to deal with after. 

Kevin also wears a medic ID necklace and always has his backup bag with him. The backup bag carries additional batteries, an extra system controller, extra battery clips, and a few other essentials he needs. There is also a medic alert ID attached to this bag. This all in the event should something happen when he's by himself and no one is around to be his advocate. If this should ever happen I would HOPE that the first responders notice his backup bag or medic ID necklace. 

For me being his caregiver, being his advocate, well, it goes further than just the "in case of emergency" situations. Just to give you an idea:
  • knowing and/or being aware of all the alarms, bells, & whistles that are associated with the LVAD.
  • contacting the local fire departments (our first responders) should we have to dial 911 again, and setting up LVAD training for them. 
  • contacting our local hospital's ER should Kevin have to go there to be stabilized before being transferred to the VAD team's hospital.
  • medication management. (this will come in handy for after transplant)
  • daily sterile dressing changes on his drive-line site. ordering the supplies to do this.
  • checking his daily flowsheets which is where we log all the LVAD readings, blood pressure, weight, and temperature. knowing when to call the LVAD pager.
  • getting him to/from the labs. Well, he can do this now since he's driving & it's only 3 miles away. But I'm the one reminding him when to go, I'm the one following up with the VAD team to see what his INR is. INR is important...too low his blood could clot which is bad for the LVAD. too high meaning his blood is too thin he could bleed out.
  • VAD clinic visits and in general any doctor visits.
  • re-adjusting our earthquake emergency plan to fit in the "what to do" and "how to get by"
  • dealing with health insurance. the claims. the denials. the idiots. 
  • being his emotional support.
I'm saddened to say that I have been unsuccessful in getting the local ER and fire department to be trained. After several phone calls and empty promises, still nothing. Today was their last chance. If I hear nothing by tomorrow, then our local ER will be getting a visit from me in my current monster bitch state. I'm not giving up.

Health insurance. Yuck. I'm still not ready to "discuss" Mr. Insurance but I will share one story with you. At the beginning, Kevin had to be helicoptered to a larger facility, one that had a VAD program, one that could save his life. About a month after, he was still in the hospital, we get an EOB (explanation of benefits) from our insurance about said helicopter ride. Apparently it was an "out of network" helicopter company so they weren't going to pay the bill. HA! I called and very politely told the idiot in the claims department that I didn't have time to flip through their preferred network of helicopter companies because my husband was on life support & he needed immediate help at a better facility. After a half dozen phone calls and four months later they finally paid the bill. Why? Because I fought for him. And there isn't a week that goes by that I don't have to call and fight for some other claim they've denied. 

So this is just a glimpse into the caregiver/advocate aspect of my life, living with an LVAD. Add on top of this that I am a full time mom to twin 4-year old boys, devoted wife, full time employee, chef, housekeeper, fixer of boo-boos,  nose wiper, folder of never ending piles of laundry, updater on Kevin's status to his family and somewhere in there I have to find time for myself. Geez I'm exhausted just typing that. 

If you are an LVAD caregiver, I just want to remind you that you're not alone. I know what you're going through. Been there, done that, living it. Does it get better? Yes. Does it suck when I have to fight to for something so obvious? Yes. Do I ever want to just scream at the top of my lungs? Yes. Do I ever want to punch the people who try to compare their husband's defibrillator to my husband's LVAD? Yes, yes and yes. 

I leave you with this........  where there is a will, there is a way. 

Thursday, May 19, 2011

Medical records have arrived..

Back in April I blogged about those 264 hours that Kevin is missing from his life. The hours that he lost when his heart failure struck. We had requested his medical records from those days specifically as well as the operative reports, pathology reports, nurses reports, doctors reports..... you get the idea. 

The medical records have finally arrived. They arrived about a week ago. There are so many pages that if I were to knock someone over the head with them, they'd probably get a concussion. 

Kevin hasn't read them yet. 

I have.

No, I'm not going to share the actual details of my husband's medical records but I will share my view. 

It's like torture really. Reading his medical records brings back all the bad memories. Reading them brings back all of the actual conversations that I had with every single doctor...all of those conversations were documented. His day of admittance I got about to the sixth doctor report/original assessment and had to stop reading. It was the exact same thing over & over again but since each doctor has their own specialty it would highlight what was so very wrong with him. 

I read about the actual amount of blood loss during both open heart surgeries. How much blood he actually needed. I remember being told but I must've tucked that away like you do with summer clothes when autumn arrives. Then recently having it re-opened and now to the forefront of my mind once again. 

Every verbal consent is in there. Every written consent is in there. 

There is one consistent line in every nurses report & doctors report: "wife is bedside, supportive, and healthy." You are damn straight I'm supportive and healthy. And you can bet I will ALWAYS be by his side no matter what hurdle presents itself. So bring it .... cause we are. 

Sunday, May 15, 2011

the chance.....

Ok so most of you know I'm a Jersey girl. My childhood was spent living in your average central Jersey neighborhood.  I was fortunate enough to grow up in a world where kids played in the street, my parents let me walk to my friends house, and it was a neighborhood where everyone knew each other.

One of my childhood playmates lived right next door to us. I have great memories of time with him. We'd play curveball, watch Yankee games, play kickball, stickball (yes I was a tomboy), and climbing trees and normal kid kinda stuff. His father had a heart problem. I can't remember exactly his heart problem...I was a kid....I wasn't privy to those details. BUT he would come over every once & awhile and sit down with our family at dinner...chat over the hedges with my brother or my father... he had a nickname for me "no-knees" LOL....and then I recall him walking around with an oxygen tank. His condition got worse. At this point,  he needed a new heart. That's right folks, a heart transplant. I honestly can't recall how long he waited for his new heart but I remember when he came home...you had to wear a mask to visit him during the first few months. It was fantastic to see him doing so well and to see my friend so happy to still have his dad around.

Time went on. We moved, everyone grew up, still kept in touch here & there..... I think I had only been living in California for about a year when my brother told me that our neighbor had passed. After transplant he lived on for about 15 + years. I'm 37 years old now. He passed when I was in my late 20's. He had received his heart transplant in the 80's.  Freaking amazing, right? Imagine what they can do today? Imagine how much time a heart transplant can buy someone? 20 + years ?

I've witnessed both sides of this donating organs, donating life. Remember my "giving blood" blog entry? I mentioned Bryson, a fellow LVAD'er. The day after I posted that blog entry he got the call for his new heart. He's doing wonderful. Rock on Bryson! I also know of someone, a fellow Mom of twins, who tragically just lost her husband. It's a life changing in the blink of an eye kind of story, that just thinking about it, well it brings me to tears. In the end she made the decision to donate her husband's organs. Her decision alone has most likely changed the lives of many... the courage & strength this woman has...well it amazes me. Her mere kindness of donating her husband's organs brings me to tears.

KTKQ forver...
I wanted to blog about this topic because I want everyone to know that at an early age I was exposed to the whole idea of donating your organs and donating life. It's surreal that the love of my life will be soon undergoing this exact same procedure. It scares the shit out of me, sure...but it also makes me feel like the luckiest girl in the world. Lucky in the sense that an act of kindness from someone who simply marked off the "donate organs" box on their drivers license could very well give me the chance to spend 20 + years more with the love of my life. The chance for him to see his children graduate high school. The chance to be holding his hand when they call his name at the Oscars for "best score"...because let me tell you folks, he's that good. The chance to grow old with him.... the chance to keep my little family of four for just a bit longer...

Thank you if you're an organ donor.

If you're not an organ donor, what are you waiting for?