Confessions

I thought I’d write a post on things you may or may not know about me. We can always call it confessions of a LVADERS fiancé if you will, so here goes:

·         Sometimes I have mad days when I feel like life isn’t fair to me or Jason

·         Sometimes I really hate the 20 foot cord! It couldn’t have been a LITTLE longer?

·         I have days that I am full of faith that Jason will be here with me forever and days that  I’m really scared about it. Now I do believe no matter if you have health problems or not, when its your time to go, you will.

·         If Jason ever left this world before me, my children would be my will to keep going . If they were gone and moved out with families of their own, then that would be really hard. I have cried to Jason before saying I don’t want to live this life without him, but I know deep down that’s wrong.

·         I feel guilty when I do things just for me

·         I often feel overwhelmed
        Sometimes get tired of fighting for what’s right for Jason

·         If I am talking about Jason and what I feel for him, I can cry on a drop of a dime no matter where we are. It is very embarrassing for me, but I can’t help it.

·         I am over the top passionate about Jason in every aspect.

·         I thank God every day that he sent the perfect man to me, so I would know what unconditional love felt like.

·         Sometimes I look at him while he’s sleeping, and he just looks like an angel. But sometimes I look at him and I feel so sad for him, but I know I should just be happy that he is still here beside me.

·         I think God often for bring angels into our lives, and I love that I always know who they are.

·          Sometimes I wish that I had a normal life, but then again who really does?

·         I feel like My friends and family can’t even begin to understand my life emotionally. I often feel like I can’t relate to their “normal” life.

·         I am so proud of Jason for getting an LVAD.

·         I thank God for giving me strength to fight for Jason. He also always give me the knowledge to ask the right questions.

·         I know that God is always with me…ALWAYS.

·         I have complete faith in God that he will send Jason a perfect heart in his time

·         I am so happy when I hear of our LVAD friends getting a heart, but its hard not to feel sad that

·          it‘s not Jason’s time yet. I can’t wait for that day. I will be scared of the unknown, but I’ll also be so happy I can’t even begin to express it with words.

·         I know the God has a plan laid out for Jason and I and because of that we will always trust him.

·         I know that there is always a reason of everything you do and every person you meet.

I talk to a few LVADers though email, but one has always given me tremendous strength and for that I am thankful. In an email not that long ago, I guess you could say I was feeling defeated and down and this is what he wrote back:

          …….There is a slight defeatism in your words…excuse me while I slap you…sorry about that but defeat is not an option. There will be no surrender . There is only better days ahead, try to maintain a warrior approach for you both and all the gang…Also a good mind set helps, even in the darkest hours for you both, just hold on embrace each other and stay strong for each other

I almost cried when I read those words, they were so powerful. …he is definitely one of the angels I was talking about… and its times like this that I know God is with me…

New House...and Forgetting

Well, we are pretty much set up in the new house. I still have a few boxes to go through, then I don’t think I ever want to see another box. Around this time is where the fun will begin. All the decorating, and improvements..Yay..no really ..yay! Jason and I have had a bit of a cold the past week,. Mine was a little worse,but I’ll be so happy when we can feel back to our old selves again! Jason says when I’m sick get  grumpy..I don’t know what he’s talking about…But I know he gets like that! (don’t let him tell you otherwise!)

We set up the room so Jason would have plenty of room to get to the closet and bathroom but I have to say sometimes I wish the cord was 40ft instead! He can’t even reach Emmas room. Sometimes I hate that dang cord (to be honest) Once he’s plugged in there’s usually no switching back over ..unless the house was on fire or something like that…

Jasons little mancave is coming along. He’s already got the huge TV, and we actually found a dartboard at a yardsale a few weeks  ago, you would’ve thought we found gold. He loves that thing and everyone has had so much fun with it. One thing I love about Jason is he loves going to yard sales. We both love antiques and more times than not you can find some great antiques priced cheap, because people just don’t know what they have.

Jason was really good about keep everything pretty much in arms reach while in the moving process. Of course,  we did have to have a medicine hunt, but sometimes things like that happen when you have a lot of people helping. We do have a his and her sink in the master bathroom, so that’s where Jason chooses to do his driveline care..so of course I get to have my ironing board back solely for clothes now..yay!

I unpacked our swimsuits on Sunday, of my four to his one..Haha. The thought crossed my mind to put his swim trucks In the attic, but then faith came over me and  I thought no, my honey WILL be swimming with me before the end of summer! I thought to put it in the attic,, is like giving up hope so it will nicely lay right there beside mine, until he can use it. I have to say, when I was packing them up and yelling to the other room” honey I found your swim trucks”…thank goodness he didn’t hear me, I feel like a moron.

Jason will make jokes every once in a while, and really if you don’t pay attention, it goes over my head for a minute..well actually seconds. About a week ago Jason and I were running around the house (not literally) doing things and Jason said “oh honey wanna go take a shower together in our new house” of course I said oh yes and  in that small second I though oh that would be so nice again..and then DING DING ….reality… then a frown came to my face, Jason just started laughing I just said “ and I so wanted to take one with you!”   I know I can’t be the only one here though….does anyone else just forget sometimes???

The Caregiver Burnout...

Well the good news is, We didn’t fall of the face of the earth. We have had many trial and tribulations the last few months. I started this blog for many reason, but to be a “Debbie Downer” to everyone that read was never my intention. So, I just stayed low for a few months. So, within the next few weeks I will be playing catch up.

I will first address the issue that now I know too well is a “caregiver burnout”. You hear of it a lot, and while I understood it, I never thought It would happen to me. Caregiver burnout is what I say, but for me it was more like just being in love with someone that had an LVAD.

It kind of just hit me in the face one day. Almost all my energy was focused around Jason and his LVAD. Along with that I have a full time job and children of my own. Every day I would be emailing about Jason, calling about Jason Facebooking about Jason, Tweeting about Jason and while I love Jason with all my heart, in the process I was losing myself.

So, I slowed down the emails and calls, stopped tweeting. One night Jason even told me I could stop the blog. I don’t think I even replied, It broke my heart. It would be like erasing our life, I didn’t want to do that, I just wanted to slow down and breathe a little bit.

Now, months Later the air is lighter. Jason can tell a difference in me, I’m not as stressed all the time like I was before. It became hard to feel like I was fighting for him EVERYDAY and fighting for what he deserves. I started feeling like I had no fight within me anymore, and I didn’t’ like that. On top of that I had my own personal trials that I was going through with made it ten times worse. Now, I had to fight for Jason and myself..It was just too much. I know that God always looks over me, but I swear at times I thought he had too much trust in me.

Jason and I are now in the process of getting our first actual home together. It is such an exciting time. While buying and selling hasn’t exactly been a smooth road, we are getting through it together. My house was sold, but Jason and I could not find the house we wanted. It was hard not to get discouraged, but I kept saying God will lead us to the perfect place, and when he does we’ll know it. And that he did. When we parked the car I knew this was our home. It had everything we wanted, and it is in a great neighborhood and great school district for the children. We are set to close on May 4^th so we will keep our fingers crossed on the closing date.

Note to self:   The overall lesson to be learned is even though there will be times that you don’t think God is listening you need to still have faith, but believe me I know how hard it is. But if you can push through that rain, you’ll always find a rainbow…

February Newsletter...MyLVAD.COM

MyLVAD CommunitySpotlight:

Shannon Jarratt

7 Feb 2012 - 02:01 PM    by: MyLVAD

MyLVAD is dedicated to LVAD recipients and their loved ones. We feel it is vital to know you are not alone on your LVAD journey. Every month MyLVAD will feature a recipient or caregiver who has volunteered to share their story in what we are calling our Community Spotlight.

This month we would like to introduce you to Jason and Shannon. Jason is in his early 30s and received his LVAD in the fall of 2011. He has a family history of cardiomyopathy, his father also received an LVAD and heart transplant. Shannon is his partner and his caregiver. She is a mother of two, works full time and is the author of the blog ourlifeourlovehislvad.com which chronicles their LVAD journey.

Shannon shares her reflections on her relationship with Jason since his LVAD implant.

With Valentine’s Day soon approaching, what better things to reflect on than love and relationships with someone with an LVAD.

When Jason received his LVAD on September 26, 2011, I knew life was going to change, but I had no idea to what extent. First of all, it was so hard watching someone I loved having surgery, not to mention heart surgery. None the less I was ecstatic when Jason for made the decision to get an LVAD.

I will never forget the first time I laid my head on Jason’s chest after he received his LVAD. As I listened to this awesome piece of equipment, I couldn't help but to feel a little sad that I couldn’t hear Jason’s heart any longer. .now I will let you know that within the last few weeks, I can hear Jason’s heart beating again, . I was so happy, In a strange way it feel like I got a little part of my Jason back. Now there have been plenty of times that I have thought back and thought to myself “we should have done this ..or that. That is totally normal but you can’t let those things get too you too much. Of course you will wish that you swam in the river together one more time, or took one last shower together. You just have to have faith that one day you will get to do those things together one day. For the day to day battles, I will continue to fight for Jason and be his number one fan. In that aspect I know I will never have any regrets.

When Jason was released from the hospital with his LVAD, I knew things would be different. Starting with his driveline care, we always tried to make things fun. I always love the driveline care every night. I always draw pictures on the dressing, or just write I love you or whatever comes to mind. He always looks forward to what I am going to write that night. My favorite part is how attentive he is while I’m doing his driveline care! I like to think it’s because his totally in love with me!

After the LVAD was placed Jason and I talked about when to become intimate again. I told him just to let me know when he was ready, because I knew he was going to be just as scared as I was. Now I will tell you “The first time post - LVAD”, actually does feel like “your first time” again! Its kind of awkward well I’m not even going to say kind of..it is!, I could hardly touch him anywhere because he was still so sore, I was so scared my legs would get tangled in his cord, or in some way I was going to hurt him. I have good news though, it does get better. Communication is a must in this area, and the more you are intimate with your partner, the easier it will get. You will still always be “aware” of the cords, but it does become more natural.

The emotional aspect of being with someone with an LVAD is the most difficult for me, but it is just as emotionally difficult for Jason. It is scary being with someone with an LVAD, but then again it was hard being with Jason just with his CHF. For the most part it is just dealing with the unknown. For Jason and I that meant that we knew we needed more than each other, we needed faith in our lives. With faith we are able to accept thing as they are and Thank God for everything he blesses us with each and every day. It doesn’t mean that we’ve had an easy road, it has been very hard, but we have faith that God is constantly watching over both of us. Jason and I were lying in bed one night praying, and he started to get emotional. When I asked him what was wrong, he said he was just thanking God for his life…now that’s awesome.

Living with an LVAD, Jason has what he calls “LVAD sad days” . While he doesn’t have them very often, I never dismiss his fears or feelings. He told me not too long ago that he’ll find me when I get to heaven. Although I felt like crying, I said "and if I get there before you, I won’t stop looking until I find you Jason." If you think about what could happen you will never enjoy the moment you have right in front of you. We always share our feelings and nothing is ever left unsaid between Jason and I. I will end saying this. Being in love with someone with an LVAD isn’t always easy, but I’ve never been so proud of someone in my whole life.

MyLVAD would like to thank Shannon for her openness and courage to share her story with our community. Share your thoughts and how you have dealt with some of the same issues on your journey.

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I love you more than enough... Post from Our Life Our Love His LVAD

by: Shannon Jarratt

I decided to write this knowing that there are so many Caregivers/Wives/Girlfriends that will be able to relate to this post, hope you enjoy. I loved writing this for Jason.

To My Jason:

I love you more than enough...

I love you more than enough, to ask the hard questions and to be your voice.

I love you more than enough, to stand beside you when things get tough.

I love you more than enough, not to take it to heart when you get frustrated.

I love you more than enough, to make sure our relationship is rock solid.

I love you more than enough, to dress you when you are too sore.

I love you more than enough, to cherish every moment we get to spend together.

I love you more than enough, to do everything in my power to keep you safe.

I love you more than enough, to make you feel special each and every day.

I love you more than enough, and I feel so honored to be with you.

I love you more than enough, to snuggle with you, at the hospital, in your bed.

I love you more than enough, to know that you are the most amazing man I've ever known.

I love you more than enough, to make sacrifices for you.

I love you more than enough, and I love you more and more each day.

I love you more than enough, and I know God blessed me the day he led me to you.

I love you more than enough, not to let fear get to me.

I love you more than enough, to go hunting with you, just so I can be by your side.

I love you more than enough, to be your number one supporter.

I love you more than enough, to tell everyone how awesome you are.

I love you more than enough, to never leave you.

I love you more than enough, to feel strong enough, to have your life in my hands.

I love you more than enough, and I love you with everything that I am.

I love you more than enough, to want to be your wife one day.

I love you more than enough to educate others in the hopes that no one feels alone.

I love you more than enough, to fight for you.

I love you more than enough, to find the best help for you

I love you more than enough, to educate myself more each and every day.

last but not least..

I love you more than enough, to love you for the rest of my life.

Happy Valentine's Day Honey!

On this Valentine’s Day, I will promise to love you forever…

On your LVAD sad days, I’ll do everything in my power to make you smile…

 On the days when you don’t feel like fighting, , I’ll fight for you…

On the days when there’s disappointment, I’ll remind you of the light at the end of the tunnel…

On the days when you get frustrated because you’re hooked to a twenty foot cord, I will tell you how happy I am that you are still here with me…

On the days when you’ve been strong long enough, I’ll be there to cry with you…

On the days when you feel broken, I’ll remind you that Gods watching over us…

On the days your feeling insecure, I’ll tell you how awesome you are…

On the days when life doesn’t seem fair, I’ll be there to hold you…

On the days that you don’t want to stand up for yourself, I’ll stand up for you…

On the days when you can’t find the words, I will be your voice…

As long as there is breath within me, I will always love you, and continue to honor

 you each  and every day of my life.

Happy Valentine's Day Sweetheart!

Jason & LVAD Friends On Pinterest...

Yes,  I have to say, My name is Shannon Emory, and I am addicted to Pinterest! For those of you who don't know Pinterest is an Online Clipboard for just about anything!
I made a "Board" on there for Jason and LVAD Friends. This board includes motivational Quotes that I hope you all will love, I will also keep this open for others to add "Pins" also. I will have to add the names so just send your name to be added! If you are not yet a member just send my your email and I can invite you.Have a Great Day, and Have Fun Pinning!



                                        

LVAD Friends...You don't have a be a Superhero all the time!

I thought It might be a good idea to address this. LVAD friends, we already know that you are awesome, but it doesn’t mean you can’t cry with your caregivers. We probably need a good cry anyways! I have been told numerous times that people love my positive attitude, and I for sure have one. If I let the LVAD part of our life get to me, I’ll be crying all the time. If you start holding everything end though the best thing to do is GET IT OUT!!! You might be amazed how much better you feel if you talk to one another and cry together.

Now, I’m totally not going to say things don’t get to both Jason and I. Even before he got his LVAD, I went to a few of his doctor’s appointments with him. I would just sit and my chair and watch him get up on the table just thinking “he’s not supposed to be here, this is not fair” I’ll never forget at one doctor appointment Jason was sitting there and I said to him, “why didn’t you let me know that things got worse?” and he said “ I guess I just got used to the pain” This made me so sad, and still does because I know he was trying to act like a “superhero” for me.

I never saw Jason cry until he received his LVAD. I love that he doesn’t try to hide it anymore. Just like Jason said, “sometimes you just have “LVAD sad days”, and that’s ok. Some our tears are mad tears, but I know a lot of our tears are grateful tears.

To the lovely caregivers, keep loving strong, holding tight and always remember you are their strength. Some say take time for yourself, and do so if you need that. I personally, would rather Jason always be by my side, but he loves shopping as much as I do (your jealous huh?) so that’s always a plus!

LVAD friends, I will say something else,. Look for the positive things in your life. Look at your caregiver that’s still standing by you and be grateful you have someone to hold your hand through this. Look how many more things you can do now that you couldn’t before. In this life, things happen how they are supposed to. God has it all figured out, it may not always be “fair”, but it’s the way its supposed to be. Last but not least, you are our superhero’s, we admire you all every day, you all are a walking miracle and there are more miracles to come, but just because you are our superhero’s , we don’t expect you to be strong all the time and that doesn’t mean that you can’t cry every once in a while…

If It ever becomes too much...

Jason and were talking one night, and I was just talking away about everything I have to do. (Without thinking of course) All of a sudden Jason said "Shannon, If it ever becomes too much for you, you just let me know". I think about what he said often, and It just breaks my heart. That is what made me write I love you more than enough, because I wanted him to know that I'd always be there right beside him, no matter what.

Being a "Caregiver" to Jason isn't HARD at all. All I have to do his drive line every night. All the other things I do pertaining to the LVAD is just because I love him and I want to make things easy for him. Now with that said what is hard is the EMOTIONAL side of everything. I worry about him CONSTANTLY, yes all the time. I hate when he goes places alone when I'm at work. Then again, I know I can't treat him like a child.

What I need to learn is when to step back( slowly but surely) Sometimes being his lover and his mother hen doesn't go over well. Everything I do and everything I say to Jason is out of love, but sometimes that may be hard to read. You also never want them to feel like they are not the one in control (thats a big thing)

Word to the wise:  "PICK YOUR BATTLES" If you encounter something small..let it slide, If its something big.. like gaining alot of extra fluid in a short time span..then drag them to the hospital, kicking and screaming if you have too. They will still love you in the end!

Jason Birthday February 2010

Jason's birthday was a BIG deal this past year. So, I knew I had to make it special for him. Hearing him say " I made it " ( saying he made it to another birthday ) made me so happy that I made a big deal out of this day! You can tell from the pictures that he was quiet swollen, but still at this time we didn't know that some of the medicines had already stopped working for him.

The Birthday Boy!

He LOVED his birthday cake!

Signs of Blood Clots

Another complication with an LVAD, is the risk of blood clots, If you think you or your loved one may have a blood clot,  call your VAD coordinator ASAP.  Here is what to look out for:

• Swelling
• Pain
• Warmth
• Redness

Know the Stroke Symptoms

With having the LVAD a stroke is one of the complications that could occur. Learn what to look out for as a caregiver or yourself. If you think you or your loved one is having any of these symptoms DO NOT hesitate to call 911, Then call your VAD coordinator.

• Sudden numbness, tingling, weakness, or loss of movement in your face, arm, or leg, especially on only one side of your body.
• Sudden  vision changes.
• Sudden trouble speaking.
• Sudden confusion or trouble understanding simple statements.
• Sudden problems with walking or balance.
• A sudden, severe headache that is different from past headaches.

Something to Remember:

               “The will of God will never take you

           where the Grace of God will not protect you”

Greg Lowe

Greg Lowe celebrated the 10th anniversary of his heart transplant on September 21, 2010.
It's a rare week that goes by without Greg Lowe visiting the Cardiac Care Unit on Main 10. He's there to listen, sympathize, encourage and help heart patients and their families. He knows what it's like to have a very sick heart, a very long hospital stay, and receive a very special gift—a donor heart.
Greg's journey to transplant began in July 1997. He was 43 years old and father to eight daughters, ages six to 26, when he suffered a massive heart attack.
"I coded [cardiac arrest] in the ambulance, so they diverted me to MCV emergency department," said Lowe. "That was the beginning of my relationship with the incredible MCV heart team and a second chance at life. It has been a long road with plenty of bumps along the way. That heart attack pretty much destroyed the left side of my heart, so I became what they call a 'frequent flyer,' in and out of the hospital for surgery, procedures and medicine changes. In June, 1999 I was admitted so they could keep me and to await a matching donor heart. Fifteen months later, on September 21, 2000, Greg Lowe was transplanted. He went home within two weeks.
"The staff made this the most beautiful thing that ever happened to me," he said. "They were great to me and to my family. They educated us and helped us stay positive. That's very important, to stay positive and believe you will make it through. Every day becomes a gift."
"That's why I give back, why I have made volunteering my career. I would rather give back everything that has been given to me, to this institution, to the patients and their families, to the American Heart Association to help fight heart disease, to keep the technology growing. If I can be of any help in any way to people who come in and out of this hospital and have a new life, that's what I want to do."

• This is just one of the many people Jason met while at MCV. They met before his LVAD surgery, and came in the ICU the second day after surgery. The nurses think alot of Greg at MCV. Only family and Greg were let in the room the first week post LVAD.

Be an Organ Donor!



LET LIFE GO ON

To remember me...
The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying.
At a certain moment, a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.
When that happens, do not attempt to instill artificial life into my body by the use of a machine.
And don't call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.
Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes a woman.
Give my heart to a person whose own heart has caused nothing by endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body, and find a way to make a crippled child walk.
Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.
Give my sins to the devil. Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.



The dreaded switch over..for me at least

It was Tuesday evening at MCV. At this hospital they always like for you to take the test and all the "hands on" test the day before discharge. So I went in the room feeling really good UNTIL they told me  that I had to totally switch out the system controller.( I had to do this because in case of an emergency and Jason was unconscious I would know how to do it.) Well,  I'm telling you I was so scared, I seriously thought I was going to start crying ,but then the next thing I knew the teacher was saying do it right now. Jason kept saying..right now? right now? I did it though without hesitation, it went as fast and as smooth...like a dream. I said " Honey we have taken this relationship to a whole new level!" I did great, and Jason was so proud..

Off to the Pumpkin Patch!

The headed off to the Pumpkins Patch today with Kiddos in tow. Jason's been doing wonderful. I was a little scared about the tractor ride, but thankfully it was nice and smooth.

Jason and I

Austin, Emma and Autum

All the Kiddos!

HAHAHA...So funny!



Austin and Jason
I love this one!