My Story...My Miracle

In the spirit of Easter, I thought that it would be very healing for me to share my story, since many people do not know this. This is only a small example that having faith can work miracles. This is my story:

Ten years ago, Austin was 5 years old. By that time I was a single parent and just bought my first home about a year before. I was working privately with a hospice patient, so at that time I did not have health insurance. I was having pain in my back for about a month or so, but I figured it was from doing things around the house, or working out. At times I would cry myself to sleep when the pain became unbearable. One night, I went over my grandmother’s home to stay the night with her, so I could take something for the pain.( That way I knew Austin was safe) .  The pain got worse in the middle of the night and my grandmother took me to the Emergency Room. I found out at that time that I had kidney stones, but I need to follow up with the Urologist the following Monday. I went to the appointment and at that time the doctor ordered more test for that week.

My grandmother used to watch Austin when I worked, so that Friday when I walked into her house I knew something was wrong. She was crying and said the doctor called her and told her I had a mass in my liver, and all I could think was I hope that it’s just a cyst.  The following week I followed up with the Gastroenterologist that ordered more test. My mom When to that appointment with me and we were told then that it was not a cyst, that it was a large solid mass. He added that it was inoperable because of the location. He sent me home with very strong pain medication and told me to make a will.

It was all a little much to take in. Mama was crying and I kept telling her it was going to be ok, not to cry. I told her to stop and get me some paper and envelops, so I could write letters to everyone. I also told her that I wanted to take Austin to Disney World before I got to bad off. He has always wanted to go.  Thank goodness that Austin really didn’t know what was going on at this time, I guess he just thought it was fun having my mom and grandmother over almost constantly. Between my liver and the medication the next few weeks are horrible. I was losing weight and I could hardly keep anything down. I got sick after eating a lot. I was in the bed constantly; I had no strength at all.

One night when mom had taken Austin out , I was by myself. I went to the back door to get some fresh air and sat down. I started praying silently and then out loud. I told him that wasn’t scared to come to Heaven, but that I just couldn’t leave Austin…That he wouldn’t be ok without me. I was talking to him a long time that evening. The following day someone from the Mt. Pleasant church came over to talk and they said to me  “ Shannon, If you die today will you go to Heaven”? I said yes, and he said how? And I’ll never forget this… I said because I’m sweet and I always think about other people. He informed me at that time that being a sweet person wasn’t going to get you into Heaven. I got saved that night, right there in my living room.. and there were many tears shed.

The next day I was feeling a lot better, so I asked my mom if she would take me to get my hair cut. We also took care of the will during this time—and yes that was weird,  but I was very detailed, even my dog Bennington was going to be taken care of once I was gone—yes I said detailed…

In the next week the liver specialist from MCV had ordered test and I had an appointment to go over all of his findings. To my surprise, he said that nothing was in my liver anymore---nothing!!!!! We followed up with blood work, and my liver function panel was normal!!  I was almost dumbfounded. I couldn’t believe it. God gave me the biggest miracle... he gave me my health back and most of all he gave a mom back to her son. Still today I get my Liver levels checked every six months…and they are always normal. Praise God!!!

I agree this post was a little long winded.. but I couldn’t just tell half of the story. Even ten years later I think about that time often.  I thank God that he blessed me, and now I never doubt that no matter what situation Miracles can happen, and he is constantly beside me and watching over me.

 

Jeff Markin: Back from the Dead, Reborn Into the Light

That is awesome!!!!


Jeff Markin: Back from the Dead, Reborn Into the Light

Our "AFTER LVAD" Bucket List....

I thought it would be fun to post this. I think often about us getting “ the call” and after my honey is medically perfect again…. here is our after LVAD  bucket list :

First and foremost…I think a shower together will be on the agenda.. YES!!!!  Although they have shower bags, Jason has never wanted to try them and until a few months ago our hospital did not recommend them.

I want to jump, run and kiss in the rain with Jason !!!! Wouldn’t that be wonderful??? At this time Jason cannot run or jump because of the LVAD  and we defiantly can’t stand in the rain together –so this would be a dream.

As soon as the weather permits  I want to get professional pictures done of Jason and I on the beach with some shots in the water—Yay!! We can get sand all over us and not have to worry about the driveline –and to be in the ocean with Jason would just be awesome!!

Jason wants to go deep sea fishing .  That would be so much fun. Jason has always loved to fish and we loved to go out on his boat in the summer—and if we got hot?? We’d just jump right in the water!! ..aww how I miss those days.

Jason also wants to go horseback riding again—geez I haven’t been since high school—but I can’t wait!

I can’t forget the big one. Jason wants to go on a cruise—Yikes!! I’m scared even thinking about it!!  I believe a few LVADer’s have been told that can go on a cruise ship, but again is all about being comfortable.

I want to ride a roller coaster with Jason!! I never have been able to—He’s had CHF, ever since we’ve been together —the kids would also just love that, so that would be cool!

After reading this ….If you are perfectly healthy go out and do the little things with the one you love ….What are you waiting for?

 

 

 

 

CHF, LVAD & DATING Part One

·       Are you dating someone with an LVAD or CHF?

·       Are you thinking about dating someone with an LVAD, but are unsure if you should?

 

I wanted to address this issue, because I was asked and while back to talk to someone that was “thinking” about dating someone with and LVAD , but was unsure if they should or not.

I will say, I was going to broaden the spectrum and talk about ALL or any kind of illness, but when it comes down to it really  all the same…It’s all about love.

   So you just started talking to someone and you find out they have CHF…or maybe that already have an LVAD --- so do you turn around and run?  The truth is, I almost did, but then I realized I was going to be letting FEAR rule my life and determine if I was going to love Jason or not—I couldn’t do that.

 

 

I look back now and I can see everything I would’ve missed--- I will warn you though family can be the worse sometimes—because they “care”. I was talking to my grandmother one day recently , I told her that on the outside looking in,  she may be sad that I’m in love with someone that may possibility not be here when I get old and gray. But I told her things might not be perfect, but I am the happiest if ever been in my life—and I have an awesome life… I feel it every day and I love it!!!  Granted things aren’t always easy—but like any relationship it takes work that’s when you will be tested..is your love strong enough? --- Are you strong enough? ---(hint) This is a good time for faith to come in…

…To be Continued

If I Didn't Have You Thompson Square Lyrics

In God's Time--- I Love This

Joel Osteen NO ONE CAN TOUCH ME

Heartmate II LVAD Implantation Video - Arie Blitz, MD: Amazing!

Jason's 36th Birthday

Whew!!! The last few days has just been a whirlwind! Jason’s party turned out wonderful…It was more that I could ever had hoped for. To all the LVADers that wrote in with Birthday wishes for Jason—He read them all out loud at the party—It was an awesome experience. Not too many dry eyes at the party. I also made a video for Jason, I will put it on here when I can figure out how to do so. The video included Jason’s  friends , family  , doctors and pictures  before and after his LVAD surgery. He absolutely loved it.  I’ve got to tell you I don’t think we have ever had that much love in our house at one time—it was very touching for me. The photographer (Stacy Bradford)  that came didn’t know Jason’s story before hand and was so touched by the evening she spent with us. She was so awesome to work with and we will defiantly use her again. One thing I spoke to her about is doing “water” pictures with Jason once he is transplant and healed. Wouldn’t that just be so awesome to have some pictures of use in the pouring rain together—or  in the ocean?? I can’t wait—I know it will happen when God is ready. So many special moments happened that evening, I swear we are as blessed as blessed could be. I'll be putting the  pictures on here within the next few weeks---I can hardly wait it see them!!

Jason D. Bright Foundation

We received our first donation this week for the Jason D. Bright Foundation!! Online donations made are transferred directly into a saving account for Jason .At the end of the month these donations will be used in addition to the monthly payments that we already pay on for Jason monthly. Jason's current bills are upwards of 20K  and will be higher once he gets transplanted (200K) so every little bit helps❤

Thanks so much!

Jason's Birthday Week

This week is Jason Birthday week, but his actual birthday in February 3^rd.  I have so many exciting things planned for him! I asked many LVAD friends to send him birthday wishes to my email. I am planning to put them all in envelopes with the people names on the outside—he will LOVE this!!  Do you want to send Jason birthday wishes? Send them to:  s.emory@hotmail.com and I will make sure he gets them on his special day! Jason doesn’t always read the blog unless I tell him I made a new post—so I’m  not worried at all that he’ll see this. Thank goodness I only have a few more days left. I’ll also be posting pictures of the party ( he doesn’t know he’s having) And also pictures of all the letters that came in. We already have letters from many LVADers and even his LVAD team at MCV ( they are so awesome!)

 

Every birthday with Jason is awesome, but this one is so special to me—he deserves it ten times over!

He has had a hard year, but continues to stay positive and sometimes that can be tough. As of now, he is still on the Transplant list waiting for his gift—and we know it will come at the perfect time. In 2009 ,they told him he wouldn’t be here in five years. By our first year anniversary, Jason was getting worse.

I took him to the doctor that morning and he stayed there for a few weeks.  It was at that time he was told him he had to stop working…again. I asked his doctor when Jason was getting discharged would Jason still be with me when I was 50 or 60 —he shook his head no. That’s when I told Jason to say goodbye to that doctor-- because he wasn’t the one for us. Right then and there is when my fight for Jason began. From there we went to MCV and  4 months later Jason had his LVAD implanted.  Thank goodness for determination!!

Unfortunately, this year was have lost many LVAD warriors and each one always effects me deeply.

I do have to say however, that many of our friends have been blessed with the gift of life—those
Days for me are always so happy. I know God is planning to send Jason the perfect heart so I can’t be sad that he hasn’t gotten his yet. So, every day is a blessing that Jason is still here with us, and believe me, I thank God everyday for him— and to show love to my sweetheart—he’s  going to have the best birthday ever this year…so stay tuned!!

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!

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!!!

The sound of Jasons LVAD

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

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!

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

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...

Engagement Photos 2012

Hope you enjoyed!!

Giving the Gift of Life through Organ Donation: Chris Barry at TEDxFlour...

We can do this!

We Did it...New Insurance!

We Did it… Thank you Lord. Jason was told on August 7^th 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.

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.

Hope Now Music Video

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…

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.

The pretenders - I´ll stand by you

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???

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 4^th…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!

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.