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 .....

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....

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.

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. 

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.

the spirit of generosity

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

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

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

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

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

LVAD exit here....

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

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

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

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

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

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

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

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

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

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

Last picture of US, living with an LVAD

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

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

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

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

From start to finish, they were by my side.

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