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!

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.

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…



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

Jason & LVAD Friends On Pinterest...

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



                                        

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!                                                           

Travel Insurance with an LVAD

Jason and I took the kids to North Carolina last year for our Summer Vacation. Jason decided then that he wanted to make a tradition to stay at the same house every year for our family Vacation. Even though he would not be able to get in the water this year, he still didn’t want the kids to miss out.  I was definitely getting the Insurance this year just in case we got the “Jason come get your heart” call during our vacation.

I called to make sure that we would get a portion of our money back if the “special” call came in. The rental company sent me to the insurance company that they use. I explained Jason’s situation and then I was told they would not cover that because it’s pre- existing.  I don’t want to get the company name out because I don’t want to get in trouble, but this really gets under my skin. Death is one of the things they do cover. I asked her why they cover death, and just like I thought she said” because no one knows when they are going to die.” Then I said, “Well no one knows when Jason’s “special” call will come in either.” She really didn’t know what to say to that.

She proceeded to tell me that I should care about the money, if the “special” call comes in. Well, I’ll tell you why, (and I didn’t say this) because getting a nice vacation house for a week is expensive, and If she thinks I shouldn’t  worry about, than why are they worried about giving us our money back??

Maybe they really haven’t had much experience with people that are awaiting a transplant that’s all I can guess. I did let her know that I knew if wasn’t her fault, that it just makes me sad that we can’t stay in the same place this year.  She understood and we wished each other a Merry Christmas (well she said Happy Holidays..grrr) and then hung up.

There still is good news here though…I found a company that would cover us! They are called travel guard, and I will add the cost is very reasonable. Now there are a few conditions with having the pre-existing policy with them, but nothing really to get worked up over. You do have to get a note from your doctor saying that it is safe for you to be traveling (which is good anyways). So there is still hope, you can go on a wonderful Vacation with your family. Now the only thing you’ll have to think about losing when that “special” call comes in…is your LVAD, and that’s a good thing!

My Love Letter Pre LVAD Surgery...And Life Lessons..

Now I know what you're thinking, what does the love letter have to do with an LVAD blog...Well alot  because not only is this an LVAD blog, but it is also about our life and our love.

Today I wanted to share the importance of putting everything out there. If you are like me, sometimes I say it better on paper..or on a blog. I've gotten alot better though, Our relationship has gotten alot deeper since the LVAD surgery (and I love it)
 I've always been one those people that would regret words that had gone unsaid. I will add there are still people in my life that I have yet to say everything I want to to them ...but Jason is not one of them. The truth is sometimes its HARD to talk to people,( not Jason) thats when a letter is needed. That way you said everything, that is needed to be said, and what that person does with it is left up to them.

I've got to say, I've always been a sweet and tenderhearted person, but I never went out of my way to show strangers my true heart. Now, if they have impacted my life, I make sure to let them know no matter how awkward it makes me feel, Im always happy in the end. You never know how much something you say or do will impact someone elses life. Strangers that we have met that are so sweet, willing to offer advice, and truly care? They blow my mind each and every time, I have even be known to cry from an email a time or two.

I was given the impression as a child not to cry, and I still have I hard time when I just can't help it! I even apologized to Jason at a viewing this week, because I couldn't get "Strong" enough to stop. All he said was "It's ok Shannon" and just held my hand. Somehow, I have the mindset that cry is being weak, when it should only be letting others know you have a heart.

When Jason was in the hospital I was so scared a few days before his surgery, even though I knew God would be watching over him. I wrote him this letter so nothing would be left unsaid,( I knew if I started reading it myself, the flood gates were gonna open..)   ENJOY!

09/23/2011

Jason,

 I just wanted to write you a quick note, of encouraging words and of course love. I cannot believe that it has been almost a year in a half since “we” first began.OH MY GOSH! (can you hear me saying it…LOUD..?)  I still feel the same today, as I felt back then. You still give me butterflies, I still get nervous and our relationship never gets boring.

 I remember talking to you all night on the phone and knowing how lucky I was that we found each other again. Believe me,  I know we haven’t had the easiest road by any means, but our love conquered everything that anyone or anything threw at us.  There were plenty of times that we could’ve turn our back on one another, but It says a lot for us… that we never did.

I love so many things about us. The best thing, beside our love… is our laughter. I love laughing with you, and I love the way you hold on to me when you laugh. I love being close to you. I could never get close enough, or kiss you enough.  I know… I’m greedy right?

I could never imagine a life without you. You are the first thing I think about in the morning and the last thing I think about when I close my eyes at night (even though you’re right there!) I know I sound like the movies..but you complete me. I have everything I’ve always wanted with you.. and yes I mean everything . There’s no way for you to ever know how much love is in my heart for you.

I know we have a long, exciting, scary road ahead of us, but I am so ready for it. Yes, there may be days that things seem unfair..and it is, but we are blessed in so many other ways. How many people do you know that have the love that we have? Its sad to say, but not many.  I’ll be there to help you, to comfort you, to cry with you, to be happy with you and to cheer you on, every step of the way.

 That’s all for now, just don’t ever doubt my love for you, even for a minute.  I am honored to call you my boyfriend, and I feel like the luckiest girl in the world  each and every day with you by my side.

All my love,  Shannon

                                                                                                       

Things you may need, before your loved one comes home with an LVAD ... and Tips!

When Jason was in the hospital all I could do was think about everything I had to do BEFORE he came home. I didn't want to forget something and have to run out as soon as he got home!

These are a few little things to help you:

• Make sure that the outlet by the bed is free and clear, so they can easily disconnected the cord if they need to take the equipment to another room.
• If you are lucky enough to have a Master bathroom, let them have the side of the bed closest to the bathroom. Yes, there is 20 feet of cord, but why waste it!
• Start saving plastic bags, you can use them for the used driveline care supplies that you can't recycle.
• Buy something to keep the non- sterile gauze in. We NEVER use all the gauze during driveline care. You CANNOT use this again for driveline care, but you can use it for non sterile first aid.
• Don't go out and buy a cart for your room to keep the equipment on, a nightstand table works just fine.
• For drive line care, I use an Ironing board. You can set it to the correct height, and theres plenty of room. I just fold it up and keep it under the bed when not in use.
• If you have pets I do suggest getting a hook to hang the 20 ft cord from when not in use. Preferably behind whatever you choose to keep the equipment on.You dont want Mr. Fluffy chewing on the life line... My dogs is 12 and I still did this ( just in case)
• If you have a high bed (like us) you NEED a step stool to help them get in bed. Get one that has a bar for them to hold on to, not a cheap plastic one. They are still really sore, the last thing you want them to do is fall!
• Make sure you have plenty of pillows! It hurt Jason so bad to lay flat. You will need at least 3, depending on how firm they are.
• Dont forget to get a Flashlight! Keep it by the bed at all times. You will need this if the power goes out during the night, and you want to know EXACTLY where it is.
• The Drive Line Care Supplies will arriving either a few days before or the next day after discharge, so go ahead and get a spot ready. We have shelves in the closet in our bedroom, and this is where I keep everything.
• If you have to keep the drive line supplies in another room, make up bags a week at a time. It makes it alot easier just to grap a bag, when you are ready to do the drive line care. You can also use that bag for the clean up.
• Get Antibacterial wipes . Use one to wipe off the surface before starting the drive line care.
• For the first few weeks I hung Jasons PJS up in the closet, and sat his underclothes out on a shelf in the closet. This way he didn't have to pull on any drawers, and he could still be independent.
• Do not buy slippers unless you dont have carpet,  static and an LVAD do not mix.
• Get a sports bottle. Jason was VERY thirsty, and we kept it by the bed at night. You do not want water spilled on that awesome equipment.. or worse.. your loved one!
• Always keep a nightlight or lite close by on at night. This will prevent falling if they should have to go to the restroom during the night. 
• If you will be sleeping in a different room get a monitor or a bell . They may need your help during the night.

 Whew... I'm sure I left some things out, but I hope I covered everything for the most part. It might feel very scary in the beginning, I know it's alot to remember,  but It gets better and easier. You just need to know whats safe and what works for your family. If you have any questions don't hesitate to email me at ourlifeourlovehislvad@gmail.com ,I'd be more than happy to help you.
Best of Luck!

Drive Line Scare!

Anyone that is a caregiver to someone that has a LVAD knows how careful you must be when doing Drive Line care. I can't speak for anyone else, but I know I've been scared of infection since we left the hospital. Each night when I do the Drive Line care, I almost feel like I can't breathe, until I take that last drain sponge off and see that everything is ok.  Well, last night I could see that the exit site was a little more open than normal. It was very clean, but it still scared me, and all I kept thing was "Why does it look like that?" We called the VAD Coordinator and she told us we could do a "drive by" the next day, just for peace of mind. Jason went the next day and everything was fine, they said it would still take a while to heal, but to always make sure to position the driveline  the same way that it naturally goes. Like if is "naturally" to the left, don't tape it down to the right. 

My words of wisdom of this post is this: ALWAYS second guess yourself when doing driveline care. You cannot be too careful. If you touch something with your sterile gloves on, either finish the drive line care with just one hand (I've done this a few times!) or just start over.  Drive Line care is not hard, but you need to STAY FOCUSED while doing it.

*NEVER, NEVER hesitate to call your VAD coordinator, if you are second guessing yourself about ANYTHING! Always rememeber, no question, is a dumb question!