Monday, December 31, 2012

Reflections of 2012--Take 2


    I’ve got to tell you. I wrote a post this morning about my reflections of 2012 and after
A half of a page I reread it, and to be completely honest, I was depressed. I thought about the many times I have received emails about my positive attitude, but from what I was writing it wasn't positive at all.  Although I won’t act like this year has been perfect, but still at the end of the day I have to say this. This is the life the God choose us to lead right now. God is looking over our family every day, and we are right where he wants us to be right now. I can tell you now if I didn't have my trust in God , I think I would honestly be crazy….seriously! 

Although Jason did not get his donor heart this  year (which there’s still time!)  I know God is still waiting you just the perfect time for Jason to get his donor heart. Now I’d be lying if I said I don’t pray that Jason will get a heart soon, matter of fact I asked him yesterday, but as soon as the word escaped my lips I was saying to myself… in God’s time.
Within this year I have to say that I have met some wonderful, amazing people. I love it—I NEVER

get tired of receiving emails of people I don’t even know, they warm my heart  beyond words …

And my Angels?? Yeah, I've had lots of them this year on earth  and every single one holds a special

Place in my heart—to me , things happen for a reason, you meet everyone for a reason plain and simple.  It is so neat to look back and see how God works—its just amazing…
Lastly I will say…bring it on 2013!!! I hope you will be an exciting awesome year!!



Donate Life Organ and Tissue Donation Blog℠: December 26, Volunteers continue to decorate the D...

Donate Life Organ and Tissue Donation Blog℠: December 26, Volunteers continue to decorate the D...: December 26, 2012  - Float decorating season is in full swing as volunteers decorate "Journeys of the Heart". Photo credit:  Luis Ra...

Old Post: Reflections of 2011

Reflections of 2011

As we begin 2012, I can’t help to remember some great events of 2011. First and foremost, I want to Thank God for continuing to watch over Jason every single day. Secondly? ...All the Doctors, Nurses and Staff at MCV. That they have been wonderful is almost an understatement…They have been better than wonderful. It really means a lot to me for them to care about Jason’s health as much as I do.
In May of 2011 Jason and I moved in together. That was HUGE for me. In a perfect world, especially since we have kids we would have continued to live separately until we got married, but what can I say... CHF happens! I felt that it was no longer safe for Jason too live by himself, when there were so many things that could happen. So he moved in, and surprisingly enough I’ve adjusted well…lol. I only work 10 minutes from my house and My father had to moved in 2 years ago, so there is always someone there to watch over him when I’m not there. Not so much now, but It really helped out when Jason came home from the hospital.
...and if you are wondering…we will soon be heading down the road of blissful matrimony, but not quite yet. (but I’m Waiting ..Jason..Hint Hint!)I know he’s here to stay, and he knows I’m not going anywhere. If the CHF and LVAD and everything that comes with it didn’t scare me…nothing will!
I’ve defiantly got to mention all the wonderful people we have met in our LVAD journey. They have been so awesome. When I began this journey with Jason a few weeks Pre- LVAD, I could only count on one hand the support We had. While that meant the world to me, Post –LVAD has been mind blowing! I’ve got to say Facebook is been wonderful. You have so many groups to choose from and everyone is SO sweet! We are still trying to get there with Twitter, but I have full faith that we will in 2012.
Unfortunately, Jason did not get a donor heart in 2011. Again, I will say that I have faith that 2012 will be a great year for us. If he doesn't get one in 2012, I will hold strong to my faith and in the belief that God will lead a to the perfect donor when the time is right.
I hope that 2012 will be a year to create more awareness of LVADS and organ donation and everything else in between. So celebrate the upcoming New Year with a new drive, continued faith, and of course..a lotta love!

Thursday, December 6, 2012

Custom Made LVAD Holsters by Tessie Cox



 Tessie is a fellow LVADer. She has come up with a way for other LVADers to finally be comfortable!! She will make them in any color/pattern you like. She will be selling these for 25.00 (cheap price to be comfortable huh?) I've already got Jason a camo one on order!!! If you are interested please email her @ tazzam12@aol.com.

*Great Idea Tessie!!!

Wednesday, October 24, 2012

The sound of Jasons LVAD



This is what I hear when I lay my head on Jason's Chest...just amazing...

Tuesday, October 16, 2012

Saddness, Hope and Inspiration


   Ok,  so truth be known, Im having a very emotional day. Not bad emotional, just emotional. I woke up this morning to find out that a fellow Lvader, Lorna Jarms , was now an Angel. We have lost several LVADERS this year. It saddens me so much, I can’t even put it into words. The first thing I always do is Thank God that he let my Jason live one more day.  I know its hard, because on the outside Jason looks healthy, but the risk of Strokes and Blood clots are always there and things can happen with no warning at all. I couldn’t imagine my life without Jason. So for me,  it’s a hard thing to carry every day, and I cant’ even imagine how it is for him. With that said, being in the LVAD life is anything but sad all the time. It is so inspirational. Do you know how many people we have helped??, just through our blog and our emails…Thousands!  I got a request from mylvad.com asking me to comment on a post. There was a girl wondering whether or not she should date someone with an LVAD. Here is what I wrote back to her:

·         Hi,

I've been in your shoes, and goodness I can relate. When I first met Jason in 2010 I knew he had CHF. At that time there was no talk of an LVAD we never even heard of it.In 2009 when they said he had CHF they gave him 3-5 at the most. I was sooo scared about the thought of dating him and even talked to a friend of mine. Ill never forget what she said. She said that If I had feelings for him not to be afraid, that I couldnt live my life in fear. If I had walked away from Jason because of fear,  I would've never experienced the unconditional love that Jason and I have for one another. God lead me to Jason, and when I leave this earth Ill be grateful that God showed me what love was suppose to really be like, I found my soul mate, when I chose not to be scared. How many people can really say that?? Now, you have to be strong though, yes it is scary that anyday they could leave us, I think about that alot, I'd be lost without Jason. But I know in my heart God wants this for me,and I am so honored to share my life with Jason. In this life, there is no place I'd rather be, scared or not. Just look within yourself, God might be planning Awesomes things for you that you haven't even began to experience yet. Dont run away honey, run to him!! My email is ourlifeourlovehislvad@gmail.com If you'd like to contact me that way. We also have a blog when you can check it out, it might help you.http://ourlifeourlovehislvad.blogspot.com/

oxox, Shannon

So, like in any life..You have to take the joys with the sadness. When Stephanie Larson went into the hospital to receive her donor heart, after the surgery there were complications. This just broke my heart I remember calling out to Jason, explaining what was going on, I felt like crying every day, my heart just went out to her and her family, since Jason and I have been on this journey I had heard nothing but positive things. So to see this first hand It was very scary to me. I had everyone I knew praying for Stephanie, I even had alerts going to my phone every time her mom made a new post ( she did great by the way!) When she started getting better it was such a blessing!! God worked through Stephanie, he was always with her, and every single prayer was answered. Stephanie has since gone home from the hospital, and is doing wonderful. ------ So, the point of this post is Yes in LVAD life you will hasve moments of sadness, but goodness,  all the miracles, the close “family” we have with the LVAD community. it is just mind blowing! To have someone tell me I’ve help them through things, that they couldn’t have gotten through things without me and that our story has been an inspiration to them…it doesn’t get any better than that…

Peter Cetera - Glory Of Love (Lyrics)


Everything Happens For a Reason..Good thing to keep in Mind!


Thursday, October 4, 2012

My Honey is Back on the Transplant List!!!


Yes that’s right, Jason is officially listed back on the heart transplant list as a status 1B. Of course it’s not a 1A, but hopefully we’ll get that chance on day! Jason had his first appointment last week, it had been 11 months!! Yes, there can be no doubt that God has watched over my Jason.  Dr. Shah said his heart looked the same now as it did last year, I can’t complain about that. Jason was so nervous about his appointment so  I was so excited everything went well. They did turn up his speed from 9600 to 10000 to give him more energy…and lordy be what a difference that made! Hopefully it will help him with his little spouts of forgetfulness too! We went to VCU/MCV on Wednesday to get a Right Heart Cath, but it ended up his INR was 1 point too high to do the procedure..ughhh better safe than sorry though I sure they know better than me. We’ll be trying again tomorrow, so Ill be going in with fingers crossed!   OXOX

Wednesday, September 26, 2012

LVAD One Year Anniversary

 One year ago today Jason had his Lvad Implanted. I still remember it like it was yesterday. When I first saw him after surgery, tears were just rolling down my face. I felt so sorry for him, all the cords, monitors, IVs  breathing machine, it was quite over whelming I wasn't prepared for what I saw at all. He was centered in the bed so I couldnt even kiss him. All I could do is touch his arm and face. Even though he was in the ICU I was certain I was going to be able to stay the night. I talked to the nurse when she came in and she let me know that I could stay a little bit longer, but I couldnt spend the night. I started crying all over again, I did not want Jason to be alone. She promised me than that she was his only nurse and that if  I wanted I could call every hour and she would hold the phone to his ear so I could talk to him, even even though he still had the breathing tube in and could not talk.My favorite day was the second day, they removed his breathing tube and the first thing he did was rub my arm and say that he loved me. It was the sweetest thing ever!
From that day on, there was no stopping Jason. He was up and walking the next day, and too proud to take pain medicine I might add... We went through the scary school  and hands on test...but we rocked it..together. Since that day Jason has just done awesome, and we have learned to adjust very well to LVAD life.
 Jason getting the LVAD brought our relationship to a whole new level, beyond what I ever dreamed of. I am thankful that there was a such thing as an LVAD, because at one time we didnt even know about it, all we were told is he had 3-5 years left. I couldnt believe that God gave me this perfect man, just to take him from me again. But he didnt though...and every day I'm grateful for tha( and I mean EVERYDAY!). We have been through alot this past year and although it hasnt always been easy ( by any means) , we put our trust in God and held on tight to each other. ...Real Tight!

Congratulations Honey ...you made it!! I hope the next celebration will be that of a new heart that God has chosen just for you...

Friday, August 10, 2012

We Did it...New Insurance!


We Did it… Thank you Lord. Jason was told on August 7th that he had been approved for the PCIP insurance. Now I don’t know all the ins and outs about everything yet and I can honestly tell you that I am scared. Our monthly payment is reasonable especially compare to others, but what gets me is the 20% that the insurance doesn’t cover. That’s still a lot, and I pray that we don’t have to pay that upfront. The average cost for the heart transplant, before and after care is a whopping   997,700.00. 20% of that is 199,540,000. !!! I feel better once I know what the co pays will be.
 I know in my heart that God will provide everything we need financially, so as of right now I am placing this in is hands and he will see us through.  In the beginning to this process, when medical  bills started piling up and as they still continue too. I told Jason we cant worry about the money or about how much we still owe. We pay a certain amount every month. But like I told him, we have to live and we have to have food on the table and such.  I’m sure anyone with medical problems are experiencing the same thing. It will all work itself out, but the important part is my Jason will be able to get off hold on the transplant list!
His effective date will be September 1, and Ill make an appointment for him to do back to the doctor that week. He hasn’t been to the doctor in so long, Ill will be interesting to see what they say. God has watched over Jason this entire time. He hasn’t had to go to the hospital at all. Infection free and everything..Praise God.
Even though when you have and LVAD (or anything for that matter) anything could happen at any time..BUT I will feel more secure knowing the doctors are checking on him every few weeks now, at least it will give me comfort that hes ok.
Im sure it will take him a few weeks of test and things before getting back on the list, but I will surely be looking forward to that day! One side effect that I see with the LVAD ( in Jasons case) is that he has gained weight, so hopefully that wont be an issue.
So the lessoned learned here is there’s always going to be something. Even after Jason gets as heart, (and he will, in Gods time of course) there will still be issues and there will still be fears. But as we can see things and issues may try to break our spirit, but you have to keep your head up and keep going and always…always have faith that God is with you and that he will make miracles happen.

Wednesday, July 25, 2012

The Insurance Waiting Game...


Since December we have been struggling to get Insurance for Jason. Because we assumed that he would be qualified to get insurance, and didn’t hear different.( problem one, don't assume!_  It was almost two months before we KNEW he didn’t have Insurance anymore. All the while the bills just have been adding up.

 Jason stopped going to appointments, because one appointment alone can cost up to 5K, And he already had upward 15K before we knew he didn’t have insurance.( this has been sooo scary)  All we can do is just pay a little each month. On top of that, since he was awarded Social Security now he has to pay back his LTD company . So,  all and all we have many “scheduled” monthly payments a month .  I know Jason gets down about everything, but I just tell him that we just have to send what we can.

BUT…. Bills is not what this post is suppose to be about, I guess it just snuck in there. We are currently waiting to hear back from PCIP. It is an insurance that covers people with pre-existing conditions.  We got denied once because we needed a denial letter from another insurance company. We did that ( of course that wasn’t hard..but took time..3 weeks to be exact!) and had to reapply again…and wait. Jason called yesterday and they said they were in the final stages, and he should be getting a letter soon. They couldn’t tell us anything else…

So much is riding on this, I Am praying and praying all goes well and goes through. Our payment will not be that bad, (a lot cheaper than Cobra that’s for sure.) I cant wait for the day that Jason will be off hold, and back to active on the transplant list!!!!  I think that would call for a party!!

The last number of months have just been like standing still, I have cried many tears, but it doesn’t help. I tried endlessly to fight for Jason and in MANY cases I was defeated. I couldn’t believe that because Jason has worked since he was 15, there was no help for him. It was shown numerous times its not about life or death…its about money.   In only ONE instance,  the company that provides his medical equipment and dressing agreed to not charge Jason until he has insurance again, and that was truly a blessing from God, that alone took so much weight off our shoulders.

Jason has managed  with money from his Social Security to pay out of pocket for his medications and his bi weekly INR checks at Lab Corp, but of course it leaves very little money to go towards the other monthly scheduled payments to MCV, LTD and others, but they get paid.( by the grace of God)
So again so much is riding on the hope that his insurance goes through. I just hate waiting, wondering what lies before us . I cant wait for Jason to be able to go to his regular appointments, so we can have the security somewhat that he’s doing good.

For those interested check out PCIP.com, maybe they can help your family also. You do have to be without Insurance for 6 months to qualify and You have to have a pre-existing condition. Good Luck..and prayers to all.

Thursday, July 19, 2012

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 fiancĂ© 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…

Monday, July 2, 2012

Power Down...Power Down!!!


Oh my Goodness did we have an eventful weekend! Oh …and I might add, not  a good one. Friday night was just like any other night. All of a sudden at 12:30 or so I hear Jason machine going off, the power had gone out! This was big because this was the first time this has happened since he received his LVAD.  Jason had stayed up. I knew we were on the list already with Dominion Virginia Power to get our power restored ASAP., but since the storm was still going on I knew our first thought was to get the generator ((that had been so generously donated to us)  Jason and his friend were busy getting the generator so when I came out to the screened in porch Jason was not where to be seen. My curtains where flying and I was trying to get everything down to avoid being blown over. About that time I hear the next door neighbors tree cracking, Im screaming for Jason (like  in the movies) finally after many screams and the next door neighbor tree falling halfway into out yard I see him and tell him the get inside. By the way…I am still hoarse!  Of course , In this whole madness Emma was still asleep, but I had manage to scare Austin half to death with my screams. Once Jason was in the house safely, I went and woke Emma since I was slowly finding out this wasn’t just a little storm.
Soon enough, Jason got the generator started and we were able to plug in  the Refrigerator , TV , Lamps, a fan and mostly importantly his batteries.  It did disappoint me however that our power was not restore until about 2:30 the next day.  The last few days it has been in the 100’s here. Although Jason was safe with his batteries being charged as we all know heat is not a good thing for him…Or the equipment.  Thankfully  though, the temperature in our house did not rise above 80 degrees downstairs. 
For future reference there are a few details that need to be set in place. Summer is a bad time for outages and so is winter, when your dealing with ice. So now that we know we cant really count on Dominion Virginia Power to get our power on as quickly is we may need it, we defiantly have to explore our other options, so It give us a lot to think about.   So the lesson is learned Prepare , Prepare, Prepare. So we will soon have to go out shopping to prepare for the next possible storm.  The main lesson?? Don’t count on anyone else to keep your family safe, It sad to say…but true.

Tuesday, May 22, 2012

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???

Thursday, May 10, 2012

New Home, Engaged and Awesome Friends...


Oh my goodness, I know I’ve been so bad! Along with daily life, sometimes my blogging has to take a back seat…for a little while at least. Well We closed on our home on May 4th…Yay! Moving day ( or should I say days) was very stressful to say the least. We were so blessed to have a lot of our friends helping. Angela , Josh, Dj, Tammy, Francis, Melvin, Jamie, Jonathan and (at times) Austin.  We could not have done this without them, they were just awesome, to say the least. ) Oh ---and Jason and I are Engaged now!  I feel so honored to have him chose me to be his wife someday…yay!

I’ll be posting pictures of our home soon, we just got our internet hooked up yesterday! Yikes! Jason has been well, still doing really great. He even cut the grass yesterday! It wasn’t too hot outside, and he took breaks,  so I didn’t say anything. Any extra yard work or projects Jason wants to do he always has friends to help. He has surely been blessed with friends that love and care about him so much. oh-- and I have to tell you, Jason's favorite thing about the house???....he get's to have his man cave, minus the beer of course! As for me, I get the screened in porched...so excited about that. I can't wait to do little projects around the house when we get a little more settled. In my book the first thing on that list is paint, I can't stand white walls!

Thursday, April 12, 2012

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 4th 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…


Tuesday, March 6, 2012

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.

Mom's Empty Chair

I received this in an email, and wanted to share...Enjoy!

A woman's daughter had asked the local minister, to come and pray with her mother. When the minister arrived, He found the woman lying in bed with her head Propped up on two pillows.
An empty chair sat beside her bed. The minister assumed that the woman
had been informed of his visit."I guess you were expecting me", he said..
"No, who are you?' said the mother. The minister told her his name and then remarked I saw the empty chair and I figured you knew I was going to show up.' Oh yeah, the chair,' said the bedridden woman. ‘Would you mind closing the door? Puzzled, the minister shut the door. ‘I have never told anyone this,
Not even my daughter,' said the woman But all of my life I have never
 Known how to pray. At church I used to hear the pastor talk about prayer,
But it went right over my head.'  I abandoned any attempt at prayer,'
 The old woman continued,' Until one day four years ago, my best friend said to me, Prayer is just a simple matter Of having a conversation with Jesus
 Here is what I suggest.
 'Sit down in a chair;
 Place an empty chair in front of you,
And in faith see Jesus on the chair.
 It's not spooky because he promised, 'I will be with you always'. Then just speak to him in the same way you’re doing with me right now. ‘So, I tried it and I've liked it so much that I do it a couple of hours every day. I'm careful though.
 If my daughter saw me talking to an empty chair, she'd either have a nervous breakdown, or send me off to the funny farm. The minister was deeply moved by the story and encouraged the old woman to continue on the journey.
Then he prayed with her, anointed her with oil, and returned to the church.  Two nights later the daughter called, to tell the minister that her mama
had died that afternoon. Did she die in peace?' he asked. Yes, when I left the house about two o'clock, she called me over to her bedside, Told me she loved me and kissed me on the cheek. When I got back from the store an hour later,
I found her.
But there was something strange about her death, apparently, just before Mom died, she leaned over and rested her head on the chair beside the bed. What do you make of that? ‘The minister wiped a tear from his eye and said, I wish we could all go like that.'..

Tuesday, February 14, 2012

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!

Friday, January 27, 2012

Kenny Chesney - Me And You

LVAD Life & Love...

The LVAD life for us, really isn't any different from any other, in the aspect that you have good days and bad days. What is different is, every day I feel like I’m fighting for what’s right for my Jason, and sometimes it can get discouraging. I never want there to be a day that I don’t fight for Jason and an easier way of life for him. He is such a kind man, and has the biggest heart that I’ve ever known. He sees the good in strangers and thinks that everyone has his best interest at heart. When things go wrong, He is always the first one to say this is God’s plan and I believe everything he is saying, but sometimes, it doesn’t stop the tears from falling.  

Have you ever met or known someone that is meaner than dirt, but in perfect health?, Or someone that doesn’t care if they live or die? Those people frustrate me, but I have to say that I am also sad for those people, because I know that their life experiences have made them that way. When I look at Jason I see someone that is fighting to stay in this world every day and for someone to take that for granted…It just makes me sad.

Of course,  I do have to mention that fact that some women will fuss about their boyfriends or husbands and what they do and don’t do. It makes me feel sad, but of course I never say anything. What I want to say is, I hope my Jason will be here 50 years from now so I can fuss at him something so small…It makes you feel disconnected from people, because some don’t understand our life. We don’t worry about the small stuff, only BIG things matter in our house…

When Jason was place on hold on the transplant list, I felt like I wanted to cry for days. All I kept thinking about was that a heart was going to come in for my Jason, and he wasn’t going to be able to get it because of his lack of insurance.  Jason was the one that made my heart stop feeling so heavy. He said to me “Shannon, God will give me the heart that was meant for me"... It’s times like this that he blows my mind…Jason never ceases to amaze me. 

I would be lying if I said sometimes I don’t wish for a boring week every now and then. Still if I knew then what I know now, I would totally do everything a millions times over. Jason  is my rock and he is my passion. I never want to imagine my life without Jason in it. Along with my Children, he is my world. God blessed me the day I met Jason, and I’ll always be grateful to him for that.

I’ll never forget this. Before Jason’s LVAD surgery, I was so scared of the unknown,  I needed him to come back to me after surgery. I was talking with my sister Heather and I said  Heather ,I haven’t had enough time with him, we should’ve done this or that and she stopped me and said Shannon, you have had more meaningful  memories with Jason, than you’ve had  in your lifetime. She made me realized that day that she was right. God has shown me what love is, and although I may not have the perfect life from the outside looking in I have my perfect love, and he stands beside me…LVAD and all…



Thursday, January 26, 2012

Thanks to Fraternal Order of Eagles...

Recently the Fraternal Order of Eagles in Petersburg, VA made a very generous donation, to pay for one of Jason’s Medical Bills the letter of Appreciation is below:
The Fraternal Order of Eagles:
    I wanted to let you all know how much we appreciated the heartfelt donation on the behalf of Jason Bright.  Although I have never joined The Fraternal Order of Eagles, it has always been a big part of my life and my family members.
I can still remember coming to the Eagles as a Child, and how much fun we had there. Even when I was older I used to love coming to the dances or just having dinner there, with my father, Bobby Emory. The people at the eagles always made me feel like I was part of a big family every time I went.
I have to say I was so overjoyed to hear that the Eagles were able to help Jason. It’s not even about how much you gave, Its about having to heart to do it, It hard to put into words what an impact you had on our lives, but I will let you know that meant the world to us.
Jason still has a long road ahead of him. He has recently lost his Insurance.  As of right now, MCV has placed him on hold on the Transplant list.  As soon as he is approved for his Social Security, he will have insurance again and he will be active on the transplant list once again. As always, Jason is still in good spirits, and we both know everything happens in Gods time.  We will continue to keep you updated on Jason’s condition.
Thanks so much,
 Shannon Emory & Jason Bright

Tuesday, January 24, 2012

Handbook for 2012

I recieved this through an Email, and thought I'd Share...Enjoy!
   Handbook of 2012
 Health:
 1. Drink plenty of water.
 2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
 3.       Eat more foods that grow on trees and plants and eat less food that is manufactured in plants…
 4.       Live with the 3 E's -- Energy, Enthusiasm and Empathy
 5.       Make time to pray.
 6.       Play more games
 7.       Read more books than you did in 2011.
 8.       Sit in silence for at least 10 minutes each day
 9.       Sleep for 7 hours..
 10.    Take a 10-30 minutes’ walk daily. And while you walk, smile.

 Personality:
11.    Don't compare your life to others. You have no idea what their journey is   all about.
 12.    Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
 13.    Don't overdo. Keep your limits.
 14.    Don't take yourself so seriously. No one else does.
 15.    Don't waste your precious energy on gossip.
 16.    Dream more while you are awake
 17.    Envy is a waste of time. You already have all you need..
 18.    Forget issues of the past. Don't remind your partner with His/her mistakes of the past. That will ruin your present happiness.
 19.    Life is too short to waste time hating anyone. Don't hate others.
 20.    Make peace with your past so it won't spoil the present.
 21.    No one is in charge of your happiness except you.
 22.    Realize that life is a school and you are here to learn.  Problems are               simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
 23.    Smile and laugh more.
 24.    You don't have to win every argument. Agree to disagree....

 Society:
 25.    Call your family often.
 26.    Each day give something good to others.
 27.    Forgive everyone for everything..
 28.    Spend time w/ people over the age of 70 & under the age of  6.
 29.    Try to make at least three people smile each day.
 30.    What other people think of you is none of your business.
 31.    Your job won't take care of you when you are sick. Your friends will. Stay in touch.

 Life:
 32.    Do the right thing!
 33.    Get rid of anything that isn't useful, beautiful or joyful.
 34.    GOD heals everything.
 35.    However good or bad a situation is, it will change...
 36.    No matter how you feel, get up, dress up and show up.
 37.    The best is yet to come…
 38.    When you awake alive in the morning, thank GOD for it.
 39.    Your Inner most is always happy. So, be happy.