"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)

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......

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. 

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. 

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?

Giving blood....

You know when this whole heart failure/LVAD journey started back in October, I would get minimum 50-60 emails a day of friends & family asking what they could do to help. What they could do to help Kevin. Sure I told them to put Kevin in their thoughts, send us all the positive energy they could, and didn't really know what else other than that to tell them.

Aunt Joan & Uncle Robby!

About four days into it all I recall a CSICU nurse telling me "you can tell people to donate blood in honor of Kevin." Kevin had required 40+ blood transfusions, possibly more I can't remember exactly, and this was genius. I could tell people to donate blood in honor of Kevin. YES! This would be helping us replace the blood that Kevin used. Now, the blood wasn't going directly to Kevin, it was just that our friends & family could help replenish the blood banks across the U.S., in honor of Kevin. And this folks automatically made them a part of our journey.

I had no idea we'd get such an overwhelming response.

Jill donated blood - ROCK ON!

Mike donating blood

It started out with Otto. He donated some of his "life force" in honor of Kev, took a picture of himself & posted it on my Facebook page. Tagged me and Kev... Then Gina did the same. Then John. Mike. Jill. Lori. And the list went on. People would donate blood and write it on my Facebook wall or Kevin's wall, send me emails, text messages.....Friends would post on Twitter that they were donating blood in honor of Kevin and that everyone should do the same... Kevin would get tweets from people he didn't even know that were donating. So many friends and family donated blood!! It was freaking AWESOME!!!

Gina donating blood

DAVE!!!

Kevin's Aunt Joan was donating blood with Uncle Robby one day. They live in Jersey, with the rest of our families. Anyway,  she had the genius idea of holding a blood drive on the East Coast so that we could get more blood donated in honor of Kevin. Sweeeeeet! The place that they held the blood drive was coincidentally the elementary school Kevin's mother taught at for years. The blood drive came and went. 39 people showed up to donate blood. 31 donated blood. The other 8 couldn't donate for various reasons. Of which one was Dave because the nurse apparently brutalized his veins. You still ROCK Dave!!!

I hope to have a "west coast" blood drive but I'm so crazed with focusing on fighting Mr. Insurance that I just don't have the time right now. It will happen though. In the meantime, a fellow LVAD caregiver is hosting a blood drive for her son, Bryson. He's a bright young man, fellow LVAD'er, with a long future ahead of him, presently waiting for a heart. Send some positive energy his way in addition to ours. If you're available to donate blood, here are the details: Saturday June 18 from 10a-2p at the Turnpike Shopping Center, 187 South Turnpike, Goleta, CA 93117. Make an appointment by calling: 1-800-715-3699. It would mean just the same to me if you donated blood in honor of Bryson as you would Kevin.

Lori donated blood!

I'd like to say thank you to everyone that donated blood in Kevin's honor. It meant the world to both of us. AND a special "shout out" to everyone that continues to donate blood in honor of Kevin.... you are an amazing bunch of friends and I am grateful that our paths have crossed. One more special "shout out" to Otto who donates his "life force" in honor of Kevin at his local blood bank on a regular basis. You're an amazing friend and as Kevin's wife, I absolutely appreciate it. ROCK ON!!!

Rock on Otto

In closing, I would like to say that donating blood saves lives. Period. It saved Kevin's life and it could possibly save the life of someone you know one day. Donating blood is a small thing that you can do to help save a life. 

the power of gratitude.....

Apparently it's "nurse appreciation week." My cousin's wife & good friend of mine, Cassie, reminded me of such an important week through facebook. Her status read:

Being a NURSE means you carry immense responsibility & very little authority. You step into peoples lives & make a difference. Some bless you, others curse you. You see people at their worst & at their best. You see life begin & end & everything in between. You see people's capacity for love, courage, & endurance. IT'S NURSE APPRECIATION WEEK. REPOST IF YOU ARE A NURSE, LOVE A NURSE AND/OR APPRECIATE A NURSE 

Now I'm not a fan of reposting things in my status but this time I did. I reposted the exact same thing. A day later, I'm thinking it's just not enough for me. 

I come from a long line of nurses. My grandmother, my Aunts, my sister, my sister in law, a few cousins, friends, and well, you get the idea. I am one of those fortunate people that whenever I was hurt, there was always a nurse within 20 feet to take immediate action.  I've heard stories from every one of them...still hear stories to this day. Some sad, some happy. The stories I don't understand are the idiots that treat nurses like crap. If you're in the hospital or if you have to go to the ER, why on EARTH would you be rude to the nurse taking care of you or your family member? You do know he or she has the power to expedite your case to the doctor? You do know he or she can accidentally "miss" taking blood & have to re-stick you, right? Or the families that yell at the nurses for no reason? Or the families that hang around the nurses station the entire time they're visiting their family member in the hospital.

I can only imagine how tough it must be to be a nurse in today's day & age. The knowledge they have to have, the constant training, to be quick on your feet, to be able to manage multiple patients at a time, and to be good at it too. I'm sure there is a fair share of nurses out in the world who are not good at what they do, but in my experience I haven't come across one yet (knock on wood).

So here I am blogging about nurses. Not just any nurses but the ones that took care of me and Kev during what was the worst time of our lives. I hope that through words  I'm able to express my gratitude for all the nurses at Cedars Sinai that I'm speaking about. You know who you are.... critical care tower 6th floor CSICU & CICU as well as the 6th floor North tower. And to the three nurses who continue to take care of us on a daily basis, yes folks I'm referring to those SUPER VAD ladies. You all rock.

The nurses I speak of were beyond amazing. My husband not only had the BEST care but so did I. They took care of me in the process. They took care of our families. They cared. They went above & beyond the call of being a nurse. Every night I left the hospital I hated it. Walking out of his room killed my spirit, broke my heart, but I was uplifted as I passed the nurses station. All of their smiling faces reminding me to "get some sleep tonight" or "call if you want to check on him" or "we'll take care of him Tracy." It was so comforting knowing they were there. Knowing I could call to get a status report. Even to this day when we have to go back to the hospital for various reasons...walking the halls seems as if we're "home" because of all the smiling familiar faces. The ones that hug us and ask about the boys....ask how Kev is doing...ask how I'm doing. It's something I never expected but am so ridiculously happy that they're all on OUR side.

And those SUPER VAD ladies.... I can never say enough. Constantly in touch with them, whether it's via email, phone, or using face time on the iphone. During every surgery Kev has ever had...I was comforted knowing they were in the OR with him. These SUPER VAD ladies have been there during the best and worst moments of our LVAD journey....These three ladies make shit happen. They don't take no for an answer. They always find a way, a solution to our problem be it small or big. I can honestly say that once Kevin gets a new heart, the only thing we'll miss about the LVAD are the SUPER VAD ladies. They are THAT wonderful.

I hope the CEO of Cedars Sinai knows how lucky they are to have all of the above mentioned nurses. I hope the doctors know how lucky they are to have them on their side. They all deserve a raise but since I  don't have the power to give them a raise, I can give them a standing ovation. For sure.

To anyone reading this.... if you know a nurse, cross paths with a nurse, see a nurse, have to go to the ER or doctor's office, or have a loved one in the hospital....say THANK YOU. Say THANK YOU to them because they ARE the heart & soul of your recovery.

Now for me, I must've told all the nurses at Cedars Sinai thank you at least a million times but I just gotta tell 'em again.........

From the bottom of my beating heart, thank you.  

Surprise!!!

This past Friday I pulled off a really BIG surprise for Kevin. I'm impressed with myself because I suck at surprises. For the past 14 years I have not once been able to keep a secret or surprise Kevin with something. Not this time... I kept my mouth shut and my story straight.

I surprised Kevin with a visit from his sister (also my best friend...that's right I married my best friend's brother), Lauren. I surprised her with the airline ticket in early April for her birthday. You see, the last time she had seen Kevin he was still in critical condition, still on life support. It was heartbreaking to see her leave in October not knowing if her brother would wake up or not. So you can see the emotional build up here?

I drove to LAX picked her up and sent Kevin a message on facebook saying "thank you for taking the boys to school this morning so I could pick up your surprise." He told me later he thought that I bought him something during my travels. LOL About ten minutes later I posted the picture to the left of Lauren & I on facebook and tagged him saying SURPRISE!!! His reply was "NO!!! WAY!!!" He called me, he was indeed surprised, and then it took Lauren & I an hour and a half on the damn freeway to get home. Gotta love LA!

The pic to the right is when she saw Kevin, in person, awake and living with an LVAD.

It was truly a magical weekend of smiles, eating ice-cream, playing miniature golf, going to the beach, eating pizza at Bucca di Beppo, laughing, strawberry picking, playing Star Wars Trivial Pursuit and enjoying each others company. Her visit was uplifting not only for Kevin but for my boys and myself. The surprise may have been for Kevin but Aunt Lauren impacted all of our lives this weekend. My little family of four is still enjoying this "high" on our emotional roller-coaster ride of living with an LVAD.

Lauren....if you're reading this, which I hope you are, we love you. We thank you for bringing some sunshine into our lives even if it was only for a weekend.

Dave, Grandma, & Grandpa, and all of our local Socal friends.......thank you for helping me keep this a secret. It worked!!!

My little family of four would like to thank everyone from the bottom of our beating hearts.  :-)

Aunt Lauren ROCKS!!

pic of us all on a tractor ride going strawberry picking!