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.

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 Caregiver Burnout...

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

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

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

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

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

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

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

February Newsletter...MyLVAD.COM

MyLVAD CommunitySpotlight:

Shannon Jarratt

7 Feb 2012 - 02:01 PM    by: MyLVAD

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

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

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

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

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

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

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

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

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

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

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

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

by: Shannon Jarratt

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

To My Jason:

I love you more than enough...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

last but not least..

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

Happy Valentine's Day Honey!

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

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

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

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

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

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

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

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

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

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

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

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

 you each  and every day of my life.

Happy Valentine's Day Sweetheart!

Jason & LVAD Friends On Pinterest...

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