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…

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.

Finding New Insurance with an LVAD...

Believe it or not I did not drop off the face of the earth. Jason and I have had a few hard weeks. First off I will say that Jason is still doing great. We found out I few weeks back (January 9,2012)that Jason has been place on hold  on the Heart Transplant list because his Insurance had ended. Jason’s Insurance from work ended October 16^th.  My first fear was not the money. It was that anyway a perfect donor match could come in for Jason and he wouldn’t get a call. This made me extremely sad. Jason always has an awesome way of looking at things though he said well it’s the ways it’s supposed to be right now, there’s no sense in getting mad at people, it’s not their fault. Which I know he is right, but still I wasn’t going to sit back to see what happened next, I had to get my honey some insurance to get back on that list!

First it was hard for me to comprehend that it would be so hard to get Jason help through the state.

We were told he made too much. Now while I do understand the state insurance is for low income families what I don’t understand is that why Jason can’t get insurance. They actually said if he made X amount of money a month, and his house payment was the same amount, he still wouldn’t qualify. I just don’t get that. He has worked since he was 15 years of age, and within that time has paid his share of taxes. It really just broke my heart.

Jason is still waiting on the Social Security Disability Insurance, but we were told even if and when he is awarded the Social Security Disability he would still have to wait 24 months to get Medicare. So I kept on pushing forward.

It wasn’t until I called the Governor’s Office here in Virginia that I got some hopeful news. The Insurance that I found out about is called PCIP. One of the requirements is that you must have a pre-existing condition to get this insurance and you must be without insurance for six months before applying. The great thing about this program is that it is not based on income, it is based on age. Now, while he can’t apply for this insurance until April, for us it is still a light at the end of the tunnel.

 We just started receiving bills last week that were sent to the old insurance by mistake, so as of right now he medical cost goes back to October 21, 2011. As you can imagine, they are astronomical.

We have to continue to have faith that God is leading us in this direction for a reason. Although I know it is hard sometimes, we both know that in the end God is watching over us.

Jason & LVAD Friends On Pinterest...

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



                                        

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

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

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

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

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

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

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!

Saying Goodbye for now...

I thought long and hard about today’s post.  At first I thought I would just put a simple poem up, but then thought Stu never did do things the “simple” way…

I met Stu when I came to work a company that specializes in Logistics. He worked within the Logistics Division and was so loved by everyone.  He was diagnosed with cancer a few years back and it had gone into remission. Sadly right after that, His wife, the love of his life was diagnosed cancer. She passed within a year, and shortly after that Stu’s cancer returned.

Stu always talked about his wife often, he still had her picture on his screen saver at work. It made me think about true love a lot, and how difficult it must have been for him to lose his love. I know It happens every day, It’s a way of life, but it is not fair. I just couldn’t imagine, nor do I want to.

We got the news in late November that Stu’s prognosis wasn’t good.  We were told by Stu that the Chemo wasn’t working any longer and that the Cancer was spreading.  We all took turns visiting Stu in the hospital and then continue to once he had come home.

  Death is a hard thing, I prayed and pray a lot that he could stay here with us, but then I realized that Stu is tired and in pain, and that I could no longer wish for him to stay here that way. Stu lost his Battle Saturday Evening. December 11^th.  Jason held me, and told me that Stu wasn’t in pain anymore, and he was right…but it doesn’t mean it doesn’t hurt, but I wish it did.  Since he’s passing I have thought of Stu often and usually tears come to my eyes, but something different happened today.

I was thinking of Stu and how happy he must’ve been to see his wife again on Saturday Evening. I bet he was so excited. Now, He will get to spend Christmas with his love this year..Now that makes me smile.  

Stand Proud... with your LVAD

When I first knew that Jason was going to get an LVAD many questions and thoughts came up. One thing I was worried about was Jason feeling self conscious with the LVAD. Now looking back, I just have to laugh at myself. Alot of times though... I worry more than him! I never forget the first time we went out together(same day of his discharge) , he said " Only a few people looked at me" and I said "oh really?, I didn't see anyone look at you"...(which I hadn't) Now when Jason goes out, sometimes people will come up and ask him what it is. I remember the first time I was with him when someone asked him about the LVAD. He was excited to let them know, and told them all about the LVAD, he made me so proud, I thought I was going to cry!

Another thing I was worried about was how he would be in front of me. I never wanted to have him feel shy or embarrassed. I'm happy to report..that didn't happen either! He runs around (not literally) the house now with his shirt off, looking as handsome as he always has, and I love it!

If there is one thing I can say it would be this;

I know having an LVAD is not perfect, but Thank God that there is an option. With having the LVAD,  you now have the knowledge and experience to help, educate and comfort others,  and you are now spreading the word about LVAD's so more people will know about them. Not to mention everyone you talk to might become an organ donor because of you.
So, Stand Proud with your LVAD...STAND PROUD!

If It ever becomes too much...

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

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

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

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

I No Longer Hear A Beating Heart..

 Before Jason got his LVAD, I used to love to listen to his heart. I would pray the whole time I was listening, that somehow It would heal itself.  Of course his heart didn't sound anything like mine, the rhythm was all over the place because of his irregular heartbeat.

Jason and I were lying in bed one night, about 4 days after he was released from the hospital. I GENTLY laid my head near his heart (off to the side) and I couldn't believe what I heard. I hear this loud buzzing sound! It was the motor within the LVAD. I looked at Jason and said " Can you hear that?" Of course he said no. I remember I kept listening and listening, I was just amazed. Knowing that the sound I hear is the reason Jason is here with me, that sound is keeping him alive.

I listened hard, but I could never hear his heat beat.  I knew that  the next heart I will hear within his chest will be a heart from a donor. As crazy as It was, it made me sad. I started wishing I would've known that I wasn't going to hear it again , because I would've like to hear Jason's own heart beat just one more time.

                There is a picture of an LVAD below.

 The motor is located within the blood pump.

External View of the LVAD

Internal View Of The Motor