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.

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

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.

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!

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

                                                                                                       

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!

Jason's Car..Spreading the word..

LOVE IT!!!

Jason's Team of AWESOME Doctors!

I had to make a post for these AWESOME doctors. They are full of Compassion, Personality and Wisdom. They explained things very well, and was willing to answer any questions we had. We felt certain God sent these team of Doctors to us. We are and will continue to be, forever grateful.

 

 

 

                    

 Vigneshwar Kasirajan, MD  Chairman, Division of Cardiothoracic Surgery Professor of SurgeryDirector, Heart Transplantation, Heart-Lung Transplantation and Mechanical Circulatory Support

Medical Degree: Madras Medical College, India
Specialty Training: Cleveland Clinic
Clinical Specialties: Coronary bypass surgery, valve repairs, re-operation, surgery for heart failure including transplantation, surgical therapy for atrial fibrillation, transmyocardial laser revascularization, surgical therapy for hypertrophic cardiomyopathy.

                                            

 

 Richard H. Cooke, MD, joined VCU Pauley Heart Center in 2008 as Associate Professor, specializing in Heart Failure. A native of Newcastle-U-Lyme, England, he earned his medical degree from Victoria University in Manchester, England, in1980. Dr. Cooke completed an internship and residency in England, followed by an internship and residency in Internal Medicine at Georgetown University Hospital and the Veterans Administration Hospital in Washington, DC. He completed a fellowship in Hypertension and Cardiology Research at the Veterans Administration Hospital, a Cardiology Fellowship at Georgetown University Hospital, and an Interventional Cardiology Fellowship at Georgetown and most recently spent a year as an interventional cardiology fellow at VCU.

Prior to joining Pauley Heart Center, Dr. Cooke was a Clinical Cardiologist for the Washington Regional Cardiac Surgery PC, specializing in management of patients with severe Congestive Heart Failure. He also was the Medical Director for Cardiac Transplantation at the Washington Hospital Center, as well as Chair of the Heart Transplant Core Committee.

Dr. Cooke has extensive research experience in drug and device treatment of congestive heart failure. He has been the principal investigator or co-investigator on clinical trials of medications to treat both systolic and diastolic heart failure. He has been involved in studies evaluating the treatment of concurrent anemia in heart failure and also in medications that enhance fluid removal when compared with traditional diuretics. Dr. Cooke also has been a co-investigator of HeartMate II, a second-generation laminar flow pump that is being used to "bridge" patients to transplant.

His current interests are the treatment of advanced heart failure, cardiac transplantation and interventional cardiology.

 

Dr. Shah, joined VCU Pauley Heart Center in 2009 as Assistant Professor, specializing in Advanced Heart Failure and Heart Transplantation.  He is a Richmond native and received his Bachelor’s degree in Economics from the University of Virginia.  He earned his medical degree from the University of Pittsburgh Medical Center, Pittsburgh, PA.  Dr. Shah completed both his residency in internal medicine and fellowship in cardiology at the University of Maryland, Baltimore, MD. He was awarded the Nathan H. Carliner, MD Scholar Award in recognition of outstanding scholarly activity during fellowship.
Dr. Shah’s clinical expertise includes cardiomyopathy, heart transplantation, pulmonary hypertension, amyloid heart disease and mechanical circulatory support.  He is the Medical Director of the Mechanical Circulatory Support Program.
Dr. Shah’s research interests include cardiac biomarkers, pulmonary hypertension and mechanical cardiac support. He has authored many research papers and book chapters, which have been published in highly respected medical journals including the Archives of Internal Medicine, the Journal of the American College of Cardiology, and Hypertension.

Dr. Shah is a Fellow of American College of Cardiology.  He is also an active member of the International Society of Heart and Lung Transplantation and the Heart Failure Society of America.

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