COTA for Kierra Keke

03/28/2019

Before the night ends...

It was a year ago today where the start of my new “normal” life would begin.

March 27, 2018, was the day when I came in for what I thought was JUST a 30 minute procedure of a heart catheterization. This procedure measured for the pressure and blood flow in my heart; which determines how they are or were planning to treat my heart disease.

With me being in denial about my 15 year heart condition, I didn’t expect this procedure to be much of a big thing. I assumed it would be quick and I would be able to return back to school in Corpus Christi the next day. And even though my parents were pretty certain that I wasn’t going to be able to go back, they let me have my moment.

I remember they told my parents that I had just days to live and to think I was 4 hours away from home and barely making it through the days, but I kept pushing!

It has been one hell of a ride that’s for sure, but if anything this experience has taught me more than I have ever learned in my 23 years. I did find myself tearing up a few times today, but I am feeling good and I am HAPPY, nonetheless. This is my journey and I’m living it in the best possible way that I can.❤️

03/08/2019

This is Marion Darnielle and his wife Kimberly Darneille, they are explaining how the LVAD works along with battery exchange, back up equipment, and alarms.

Now Marion has a different brand than I do, he has HeartMate 2 and I have HeartWare. Still an LVAD; working the same but looks different in design and size. I also don’t have the at-home big monitor that he has, only when I’m in-patient or at clinic visits. My alarms also sounds different and takes about 10 seconds longer to sound if unplugged for a certain amount of time.

I also have a shower bag for which I use on rainy days if I know I’m going to be out and about. And instead of showers, I take “kiddy pool baths” just enough to cover below the waist line. Now I know what you’re thinking, “How is that possible?”, “How does the water not get in the driveline area?” I’ve come up with a routine and there’s no way the water even touches my driveline site and like I said it’s literally below the waist line. It’s perfectly safe and works best for me. My dad also made me a shelf where I place Lilo as I sit in the bathtub. I’ve taken showers a few times in the past with my LVAD and it wasn’t as comfortable as I am with baths.

My dad is bald as well so he doesn’t wear the hair net when changing my dressing either and yes they make him wear in the hospital too😂

I also get those crazy stares in public and about 94% of the time my dad or whoever I’m with carries my back-up equipment for me!❤️ The other 6% when I’m at school two days out of the week!

I also have a tag that says “Vital Medical Device Inside” along with my name and the hospital #/LVAD Team # just to let people know what it is and so they won’t try and steal it, thinking it’s something other than what it actually is.

And YES it’s happened before...not to me but another friend with an LVAD. I always say the back-up battery bag looks like a camera bag so I assume that is what people think is in there.

I’ve added photos of what my equipment looks like on my personal page, since it wouldn’t let me add both the video and pictures.

03/02/2019

So Lilo has a friend that is helping detect any heart rhythms and measuring my heart activity since I’ve been having heart palpations more than usual.

I told my doctors and LVAD Coordinator about it at my last appointment and they gave me a Holter monitor to where for 2 weeks. They can log in and monitor the activity at any time during the two week period, so far they haven’t seen any thing too concerning!

Though it is abnormal and as I said more than usual, I’m not too worried about it considering I haven’t had any alarms from Lilo and it’s not keeping me from my daily routine. The only thing is that I’m back to those lovely “wash-offs” in the sink for the next couple weeks and sleeping is a mess with the wires connected to the electrodes.

We’ll see how things turn out in a couple of weeks! In the meantime, I’m enjoying my weekend catching up on sleep and getting my speech ready for the Town Hall Meeting, I got so much editing to do...Ahhh I’m so nervous!

02/27/2019

In case you haven't heard - Keke was on the news yesterday!! Please take a few minutes to check out Keke's news story. Thank you ABC13 for taking the time to capture Keke's resilience and positive outlook on life. ABC13 Houston

Kierra Hill is proving she has a whole lot of heart, even if hers is failing.

02/26/2019

A little update!

For the past couple of weeks I’ve had the opportunity to be interviewed with a couple of news anchors from Channel 13 KTRK. This was completely a surprise to me as I got a phone call one day about a month ago from someone in Communications and Marketing at the hospital wanting to hear and share my story.

For anyone who watches The Good Doctor, there is an episode where a young patient was confined to her home her entire life due to a heart condition. Although I wasn’t confined my whole life, that is where the inspiration came from to do the story with me!

As if you guys don’t hear it enough, I’ll be sharing my journey with cancer, battling heart failure, camp life, and life with Lilo!

Lately I’ve been thinking a lot about the life I was given and how God chose this life for me to live. As I’ve gotten older, I wouldn’t dare ask him “Why?” Because I believe that this life was given to me for the sole purpose of making something out of it and allowing me to meet the people that I have met & experience all that I have in my 23 years!

In a couple of weeks I’ll be headed to Minnesota to speak with the Medtronic company about my life with an LVAD. It’s exciting because they don’t get to see their LVAD patients much if at all, and are usually behind the scenes in all of this, so it’ll be great to see and speak with them again!

Sharing my story and now with having Lilo is only the beginning of it all!❤️

Don’t forget to tune in today at approximately 4:50PM on Channel 13-KTRK! And in case you won’t be able to tune it at that time, it will be posted on the ABC13.com site tonight!

02/01/2019

Today is your day, Keke! Happy Birthday!!! No matter how many hospital visits or how much homework you have from your college classes, you always keep a smile on your face and make the best out of each day. You are one of the strongest individuals we know and we're so proud of you! Thanks for inspiring us Keke!

p.s. If you have an extra $5, please hop on over to our website and make a donation for Keke's new heart:
www.cotaforkierrakeke.com

12/28/2018

It's a holiday miracle! We raised $922 from the Kendra Scott fundraiser. Thank you to everyone that came to the store, ordered over the phone, and promoted the event. We are so thankful! Currently we have raised $2,191 for Keke's new heart. We need to raise $40,000 total for the operation and all of the medicine that she will need afterwards. While this amount is overwhelming, we are hopeful that we will reach the required amount in time with everyone's help. Please consider giving (even $5 helps!) if you can. All donations are tax deductible and may be made online at www.cotaforkierrakeke.com

Happy Holidays!!

12/18/2018

Thank you all that were able to make it to our fundraiser yesterday or call in an order! Your support means the world to us. Special shout out to UB alumni Janelly Saucedo and Raul Saucedo Jr. for driving all the way to Rice Village to show your support ❤️☺️

12/10/2018

We are officially ONE WEEK AWAY from the Kendra Gives Back Party in honor of COTA for Kierra Keke! Come out and join us guys!💛

💛 Monday, December 17, 2018
💛 6PM-8PM
💛 Rice Village Location
💛 Sips, sweets, & jewels!
💛 20% of all proceeds go directly to COTA For Kierra Keke benefiting heart transplant expenses.

12/04/2018

Join us for a fundraising evening event on December 17th at the Kendra Scott in Rice Village. If you cannot make it into the store, you can order over the phone with free shipping during the event time 713-965-4056.

20% of all proceeds will go to COTA in honor of Keke to assist with transplant-related expenses.

11/28/2018

November 24, 2018

Late Friday night/Saturday morning, I was doing my routine shower followed by Lilo’s dressing change. As I started peeling off the old dressing, I started to feel an extreme rush of lightheadedness hit me, I took a deep breath and proceeded to clean my exposed driveline tube. I felt it again, but this time I dropped the sterilized alcohol swab on the floor and kneeled over the sink, to give myself a break from fully standing.
At that point, I started sweating and panicking so my main focus at that time was “COVER YOUR DRIVELINE, IT CANNOT BE EXPOSED TO AIR FOR TOO MUCH LONGER” so I grabbed the 2nd sterilized alcohol swab & continued cleaning & I dropped it..

That’s when my hands completely locked up on me and started forming into a stiff-like position. It wasn’t until that moment where I realized “Okay, something is seriously wrong.”

I went to my parents room and my dad says “What’s wrong, what, what?” I kept saying: “I don’t know, my hands are stuck” *crying*

We get in the car...
We drove about a mile before we saw 3 police cars at a gas station who had pulled over someone and my dad figured they could help us quicker than trying to make it to the nearest fire station for the LVAD certified ambulance. Thank God those cops were there on that exact day at that exact time because boy did we need them.

As we are waiting in the truck, my dad is hugging me and talking me through my panic, it was in those moments of waiting for the EMT, I felt my entire body lock up literally from my head to the tip of my toes and it felt like pins and needle sensation. I’m assuming out of panic, I just kept talking or trying to talk once my face locked up..I literally thought “Okay well it hasn’t reached my chest but I feel it in my stomach so it must be close and that’ll be the end and I’ll be gone”

These were my ACTUAL words.

“Dads what’s happening to me?”
“Everything feels tight, I’m so scared”
“I don’t want to die”
“What’s taking them so long”

My dad said: “Well we know it’s not your heart, otherwise the machine would be alarming”

At one point, I stopped trying to talk and crying and closed my eyes and just let myself relax and prepare for that moment...

The cops got in contact with the EMT, not LVAD certified but I’ll admit they did help me as much as they could.
I kept asking the EMT “Can you please help me?”

The EMT was holding my hands the entire ride to the hospital and rubbing them to give me comfort, she also gave me a really comfy blanket to keep. She told me, “Don’t let anyone take this blanket from you.” 💕

Turns out I had vitamin deficiency in potassium, magnesium, calcium/VitD. My levels were dangerously low and my INR was at 5.8 (normal ranges 2.0-3.0) and my magnesium level was at 0.6 (NR 1.5-2.5).

It was Hypokalemia. They gave me everything that I needed to stop the spasms and muscle tension. I’m feeling much better now, though my muscles are pretty sore but that’s so little compared to everything else.

Being close to death so many times in my life has left a forever mark on me, but this in particular has traumatized me in more ways than I could imagine. I will say that I am SO glad that I have my LVAD, I am very dependent on it and it help put my dad at ease knowing it wasn’t my heart causing the problem this time.

My dad told me a while back that my grandmother (his mom) has been my guardian angel & I genuinely believe that to be true.❤️