Gase shares experience with transplant patients - NBC12.com - Richmond, VA News

Gase shares experience with transplant patients - NBC12.com - Richmond, VA News

Donate Life...

I want to Honor you!!!

I have got a great idea, but I'm keeping it secret for just a for weeks more!! If you are an Organ Donor I want your picture!! Please text it to me at 804-7205615. If you want your name included or anything else please add it to the text, if your phone cannot send text send it to my email at ourlifeourlovehislvad@gmail.com.
Thanks so much for your help!!

Common Myths about Organ Donation

Common Myths Of Organ Donation

Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. It's a tragedy if even one person decides against donation because they don't know the truth. Following is a list of the most common myths along with the actual facts:

Myth: If emergency room doctors know you're an organ donor, they won't work as hard to save you.

Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ donation can only be considered after brain death has been declared by a physician. Many states have adopted legislation allowing individuals to legally designate their wish to be a donor should brain death occur, although in many states Organ Procurement Organizations also require consent from the donor's family.

Myth: When you're waiting for a transplant, your financial or celebrity status is as important as your medical status.

Fact: When you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information.

Myth: Having "organ donor" noted on your driver's license or carrying a donor card is all you have to do to become a donor.

Fact: In most states, hospitals can legally proceed with organ, eye or tissue donation, without consent from next of kin, if you have a driver's license with an "organ donor" designation are have signed up with an organ donor registry. However, it's important to talk to your family about your decision to donate LIFE so they are aware of your wishes and will feel comfortable honoring them.

Myth: Only hearts, livers, and kidneys can be transplanted.

Fact: Needed organs include the heart, kidneys, pancreas, lungs, liver and intestines. Tissue that can be donated include the eyes, skin, bone, heart valves and tendons.

Myth: Your history of medical illness means your organs or tissues are unfit for donation.

Fact: At the time of death, the appropriate medical professionals will review your medical and social histories to determine whether or not you can be a donor. With recent advances in transplantation, many more people than ever before can be donors. It's best to tell your family your wishes and sign up to be an organ and tissue donor on your driver's license or an official donor document.

Myth: You are too old to be a donor.

Fact: People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissue can be donated.

Myth: If you agree to donate your organs, your family will be charged for the costs.

Fact: There is no cost to the donor's family or estate for organ and tissue donation. Funeral costs remain the responsibility of the family.

Myth: Organ donation disfigures the body and changes the way it looks in a casket.

Fact: Donated organs are removed surgically, in a routine operation similar to gallbladder or appendix removal. Donation does not change the appearance of the body for the funeral service.

Myth: Your religion prohibits organ donation.

Fact: All major organized religions approve of organ and tissue donation and consider it an act of charity.

Myth: There is real danger of being heavily drugged, then waking to find you have had one kidney (or both) removed for a black market transplant.

Fact: This tale has been widely circulated over the Internet. There is absolutely no evidence of such activity ever occurring in the U.S. While the tale may sound credible, it has no basis in the reality of organ transplantation. Many people who hear the myth probably dismiss it, but it is possible that some believe it and decide against organ donation out of needless fear.

I've joined the "BE THE MATCH' registry !! Now it's your turn...

Dear SHANNON, Thank you for submitting your online registration for the Be The Match Registry®. Your kit has been ordered and will be sent by mail to the address you provided. It should arrive in about two weeks. When you receive your kit, please follow the instructions on the kit and return it right away. You can also see step-by-step instructions online atBeTheMatch.org/swabguide. Collecting your samples only takes about five minutes, and it's your last step to join the registry. In the next few weeks, watch for a series of three emails welcoming you to the registry. These emails will offer more information to help you understand your commitment and what to expect, as well as ideas for spreading the word about Be The Match® to your friends. (Tip: To make sure our emails are delivered to your inbox and not your junk folder, add registry@nmdp.org to your email address book.) Thank you in advance for returning your kit quickly. By choosing to join the registry, you are giving more patients hope for a future. Sincerely, Be The Match

Join the "Be A Match" Registry

You can be a Hero--Let do this together!!

-          Get people to Join!  Joining the bone marrow registry is easy!  It’s so easy you don’t even have to leave the house.  Please share the following link on your blog and Facebook http://join.marrow.org/Virginia (use promo code: Virginia).  You fill out some information online (mostly contact information) then a cheek swab is sent to your home.  Swab your cheeks and send the swabs back.  Then you are eligible to be called if someone needs your help. Super Easy!

-          To join the registry, people need to be 18-44 years old and in good health.  Things that would disqualify you would be a cancer diagnosis, HIV, or any auto-immune disorder (MS, ALS, Crohns, CF, etc).

-          Dispel the Myths!  There are a lot of misunderstandings about being a bone marrow donor and the actual donation process.  I have attached a PDF with Myths v. Facts.  Most people think that bone marrow donation is extremely painful—I here to tell you that it’s not that bad.  75% of the time there donating marrow doesn’t invovle surgery—it’s like giving blood.  Also, Be The Match will never ask you to donate if there is not a patient on the other end.  If we need you it’s because there is someone who will die if they don’t get a donation.

-          Host a Drive!  If you want to get involved we can get together to set up a bone marrow drive.  These are done every day all over the country.  This is where we will set up a few tables at a church, school, community center, lodge and invite people to come and swab their checks to join the registry.  They are easy to set up and I can help you organize the drive.

About Blood Donation

Different types of blood donation for LVADERS

Autologous blood donation

Donating your own blood for later use is called autologous (aw-tahl-uh-gus) donation. Autologous donation is most often done in the weeks before you have a scheduled surgery that will likely require blood transfusion. Your own blood can then be used during or after the operation to replace any blood you may have lost.

This is generally thought to be the safest form of blood transfusion because you’re getting your own blood back. Still, it’s not totally without risk. There’s always the very small chance that bacterial contamination or clerical errors can happen.

People who aren’t able to donate blood for others may still be able to donate blood for themselves.

There is a processing fee for collecting, testing, storing, and delivering each unit of autologous blood. Be aware that your health insurance may not fully pay for this. There’s also a need to plan ahead so that you have enough time before surgery to have your blood cell counts go back to normal after your blood has been collected.

Directed donation

Donating blood for a family member, friend, or other specified patient is called directed donation. This can be done at any blood donation center, but you should call ahead to check requirements and schedule the donation. The donor must meet the same requirements as for regular blood donation, and the donor’s blood must match the blood type of the recipient.

Blood from directed donors has not been shown to be safer than blood from volunteer donors and, in some cases, may actually be more likely to cause problems. (For example, see “Graft-versus-host disease” under “Transfusion reactions” in the section, “Possible risks of blood transfusions.”)

The same types of testing are done on blood from directed donors. As with autologous donation, there is a processing fee for collecting, testing, and delivering each unit of directed donor blood. This fee might not be covered by health insurance. If the person the blood was intended for doesn't need it, some blood banks will use it for someone else. In others, it may be thrown out.

Are you an Organ Donor?

Jason's First Hospital Stay Since the LVAD

Jason has been VERY fortunate in the last 2 years, in not having any complications that would send him to the hospital, until recently. In February, he started feeling really tired, for me, I thought it was because he had over worked himself the day before, so right away I didn't get too scared.

 By that night he was still resting, and it wasn't until I turned over in the bed that I touched his arm, and poor thing was on fire, he was running a temperature of 101.3 at that point. I called the LVAD coordinator and she told me to start giving him Tylenol every four hours, so I did so. ( even setting my alarm to give it to him) By the next morning it was at 99. so I went to work. During the day I kept calling reminding him to take his medicine and keeping track of the temps. 

By four it had gone up to 103. So they told us that they would call when he could come straight to a room. All that night and the next day was full of test. His blood work was normal. Echo was normal and the Chest X-Ray was normal . It ended up that Jason just had a fierce Virus, so they discharged him, with antibiotics. The next morning he started running a temperature again, and throwing up. I called the coordinator again and she ordered him some nausea meds and told me to keep him hydrated.

 Slowly, but surely he started getting better, but it was at least until the Friday that he felt like himself again. It did bother me for a while that we never knew what this virus was-- but now I'm just thankful its gone...

Check the Hospital Locator --If only for a weekend trip!!

I recently had a company get together in Maryland. Jason and I both had I wonderful time! One thing I have to remind  fellow LVADers is you still need to go to MYLVAD.com before a trip and find the nearest hospital. I did so, and even called the hospital to make sure. They were very helpful and even gave me the LVAD coordinators cell number in case I needed it!--

March is National Eye Donor Month!!

Winnie the Pooh: "You're Braver Than You Believe, Stronger Than You Seem...

Joyce Meyer Healing Is Gods Will for Our Lives

Do you want to build a snowman Jason???

Did You Choose The Right Supplemental Insurance?

This is something that I have been meaning to address. Not only to our MCV/VCU Friends, but to all the LVAD warriors. When Jason became edible for Medicare, of course we had to get a supplemental insurance, which we choose to go with Humana. When I called Medicare I told them what Hospital Jason went to, who his doctor was and a list of his medications. By that, they set me up on Humana HMO.

 I thought everything was taken care of and we received all the paperwork and everything from Humana.It wasn't long though the woman from MCV was calling me telling me there was a problem. MCV/VCU does NOT taken Humana HMO. They let me know that Jason would not receive a heart if one came in for him while he was on this plan.

As you can imagine, I was furious that the so called “professionals” at Medicare and the one that checked the information at Humana let this slip by. Long story short I switch him over to a PPO. (After the Humana rep came to our house) Thankfully Humana felt so bad for the mistake they said it would be covered if he did get the call before January when the PPO was to be active.

So lesson learn, BEFORE making any decision check with your hospital. Don’t leave it up to Medicare or Humana. Also ask that a rep come to your house. Everything is so much easier when it’s right there in black and white.

Hunting 2013

A Cut Above

This is Jason's Surgeon!!!





A Cut Above

The Pauley Heart Center at VCU

VCU Pauley Heart Center Renowned for Care of Afib Patients

VCU Pauley Heart Center Renowned for Care of Afib Patients

For all the LVADers

Someone taught me to Never Surrender a long time ago--- and its something I will never forget-- Thanks for always getting me straight Matthew Cummins.... any LVADer or "caretaker" can appreciate this song...

 

Happy Birthday Baby!!

Well Mr. Bright your birthday is almost here. Ever since 2010, every time your birthday starts to roll around, I always here you say—I made it another year…and yes honey you have. I want you to look back on the past years and I want you to see just how far you have come—it’s amazing—you are amazing! You always face everything you go through with such bravery… you are truly an inspiration to me and everyone you meet.

I had to put this song on here to remind you where we were in 2011. I listened to this song every day on the way to the hospital (in tears I might add) there was so much uncertainty during this time. The day you got your LVAD is the day I know you wanted to fight, and you have been fighting ever since.

One big thing from this year was –Our wedding!! Goodness, I get chill bumps every time I think about that day! You looked so handsome!!- I felt like the luckiest girl ever, I truly love you unconditionally.

I hope you have the best birthday ever sweetheart—and I’ll be right there by your side for all the ones to come.

Oxox-Shannon

Fun at the Winery

Donate Life ...Was at the Wedding

 

 

 

We Finally Got Married!!!

Goodness, it seems like it been forever since I was just able to sit in front of the computer and collect my thoughts enough to write. Yes-- Jason and I finally took the Plunge!! The day was awesome and everything went beautiful. I couldn't have dreamed anything better than what it was that day. Here's a few pictures... Hope you like them!!

 

 

 

 

 

 

I will marry my Superman in 3 months and 14 days!!!

That's right, the time has finally come,  and we both are so excited!!! We are still getting all the little details done. Jason has just been awesome, I don't want to tell details, but we will be having a VERY special table set up at the wedding, and I can't wait to see how it comes together! I'm am so excited !! I might have to tell you BEFORE the wedding, but well see...there will defiantly be lots of pictures!!


Jason has been doing great for the most part, he has been having ALOT of PVCs lately. They said they were surprised that he's not feeling like is going to pass out a lot-- but he doesn't so that is a blessing. He has also been trying to lose weight, and has been doing great. The weather is nice here and feel so good at night so hopefully we'll be able to start our night walks again soon!

That's all for now...God Bless!!






PVCS:  (Premature ventricular contractions (PVCs) are extra, abnormal heartbeats that begin in one of your heart's two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a flip-flop or skipped beat in your chest. Premature ventricular contractions are very common — they occur in most people at some point.)

 

My Story...My Miracle

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

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

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

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

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

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

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

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

 

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

That is awesome!!!!


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

Our "AFTER LVAD" Bucket List....

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

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

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

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

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

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

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

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

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

 

 

 

 

CHF, LVAD & DATING Part One

·       Are you dating someone with an LVAD or CHF?

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

 

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

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

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

 

 

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

…To be Continued

If I Didn't Have You Thompson Square Lyrics

In God's Time--- I Love This

Joel Osteen NO ONE CAN TOUCH ME

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

Jason's 36th Birthday

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

Jason D. Bright Foundation

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

Thanks so much!

Jason's Birthday Week

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

 

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

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

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

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

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

Reflections of 2012--Take 2

    I’ve got to tell you. I wrote a post this morning about my reflections of 2012 and after

A half of a page I reread it, and to be completely honest, I was depressed. I thought about the many times I have received emails about my positive attitude, but from what I was writing it wasn't positive at all.  Although I won’t act like this year has been perfect, but still at the end of the day I have to say this. This is the life the God choose us to lead right now. God is looking over our family every day, and we are right where he wants us to be right now. I can tell you now if I didn't have my trust in God , I think I would honestly be crazy….seriously! 

Although Jason did not get his donor heart this  year (which there’s still time!)  I know God is still waiting you just the perfect time for Jason to get his donor heart. Now I’d be lying if I said I don’t pray that Jason will get a heart soon, matter of fact I asked him yesterday, but as soon as the word escaped my lips I was saying to myself… in God’s time.

Within this year I have to say that I have met some wonderful, amazing people. I love it—I NEVER

get tired of receiving emails of people I don’t even know, they warm my heart  beyond words …

And my Angels?? Yeah, I've had lots of them this year on earth  and every single one holds a special

Place in my heart—to me , things happen for a reason, you meet everyone for a reason plain and simple.  It is so neat to look back and see how God works—its just amazing…

Lastly I will say…bring it on 2013!!! I hope you will be an exciting awesome year!!

Donate Life Organ and Tissue Donation Blog℠: December 26, Volunteers continue to decorate the D...

Donate Life Organ and Tissue Donation Blog℠: December 26, Volunteers continue to decorate the D...: December 26, 2012  - Float decorating season is in full swing as volunteers decorate "Journeys of the Heart". Photo credit:  Luis Ra...

Old Post: Reflections of 2011

Reflections of 2011

As we begin 2012, I can’t help to remember some great events of 2011. First and foremost, I want to Thank God for continuing to watch over Jason every single day. Secondly? ...All the Doctors, Nurses and Staff at MCV. That they have been wonderful is almost an understatement…They have been better than wonderful. It really means a lot to me for them to care about Jason’s health as much as I do.

In May of 2011 Jason and I moved in together. That was HUGE for me. In a perfect world, especially since we have kids we would have continued to live separately until we got married, but what can I say... CHF happens! I felt that it was no longer safe for Jason too live by himself, when there were so many things that could happen. So he moved in, and surprisingly enough I’ve adjusted well…lol. I only work 10 minutes from my house and My father had to moved in 2 years ago, so there is always someone there to watch over him when I’m not there. Not so much now, but It really helped out when Jason came home from the hospital.
...and if you are wondering…we will soon be heading down the road of blissful matrimony, but not quite yet. (but I’m Waiting ..Jason..Hint Hint!)I know he’s here to stay, and he knows I’m not going anywhere. If the CHF and LVAD and everything that comes with it didn’t scare me…nothing will!

I’ve defiantly got to mention all the wonderful people we have met in our LVAD journey. They have been so awesome. When I began this journey with Jason a few weeks Pre- LVAD, I could only count on one hand the support We had. While that meant the world to me, Post –LVAD has been mind blowing! I’ve got to say Facebook is been wonderful. You have so many groups to choose from and everyone is SO sweet! We are still trying to get there with Twitter, but I have full faith that we will in 2012.

Unfortunately, Jason did not get a donor heart in 2011. Again, I will say that I have faith that 2012 will be a great year for us. If he doesn't get one in 2012, I will hold strong to my faith and in the belief that God will lead a to the perfect donor when the time is right.

I hope that 2012 will be a year to create more awareness of LVADS and organ donation and everything else in between. So celebrate the upcoming New Year with a new drive, continued faith, and of course..a lotta love!

Custom Made LVAD Holsters by Tessie Cox

 Tessie is a fellow LVADer. She has come up with a way for other LVADers to finally be comfortable!! She will make them in any color/pattern you like. She will be selling these for 25.00 (cheap price to be comfortable huh?) I've already got Jason a camo one on order!!! If you are interested please email her @ tazzam12@aol.com.

*Great Idea Tessie!!!

The sound of Jasons LVAD

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

Saddness, Hope and Inspiration

   Ok,  so truth be known, Im having a very emotional day. Not bad emotional, just emotional. I woke up this morning to find out that a fellow Lvader, Lorna Jarms , was now an Angel. We have lost several LVADERS this year. It saddens me so much, I can’t even put it into words. The first thing I always do is Thank God that he let my Jason live one more day.  I know its hard, because on the outside Jason looks healthy, but the risk of Strokes and Blood clots are always there and things can happen with no warning at all. I couldn’t imagine my life without Jason. So for me,  it’s a hard thing to carry every day, and I cant’ even imagine how it is for him. With that said, being in the LVAD life is anything but sad all the time. It is so inspirational. Do you know how many people we have helped??, just through our blog and our emails…Thousands!  I got a request from mylvad.com asking me to comment on a post. There was a girl wondering whether or not she should date someone with an LVAD. Here is what I wrote back to her:

·         Hi,

I've been in your shoes, and goodness I can relate. When I first met Jason in 2010 I knew he had CHF. At that time there was no talk of an LVAD we never even heard of it.In 2009 when they said he had CHF they gave him 3-5 at the most. I was sooo scared about the thought of dating him and even talked to a friend of mine. Ill never forget what she said. She said that If I had feelings for him not to be afraid, that I couldnt live my life in fear. If I had walked away from Jason because of fear,  I would've never experienced the unconditional love that Jason and I have for one another. God lead me to Jason, and when I leave this earth Ill be grateful that God showed me what love was suppose to really be like, I found my soul mate, when I chose not to be scared. How many people can really say that?? Now, you have to be strong though, yes it is scary that anyday they could leave us, I think about that alot, I'd be lost without Jason. But I know in my heart God wants this for me,and I am so honored to share my life with Jason. In this life, there is no place I'd rather be, scared or not. Just look within yourself, God might be planning Awesomes things for you that you haven't even began to experience yet. Dont run away honey, run to him!! My email is ourlifeourlovehislvad@gmail.com If you'd like to contact me that way. We also have a blog when you can check it out, it might help you.http://ourlifeourlovehislvad.blogspot.com/

oxox, Shannon

So, like in any life..You have to take the joys with the sadness. When Stephanie Larson went into the hospital to receive her donor heart, after the surgery there were complications. This just broke my heart I remember calling out to Jason, explaining what was going on, I felt like crying every day, my heart just went out to her and her family, since Jason and I have been on this journey I had heard nothing but positive things. So to see this first hand It was very scary to me. I had everyone I knew praying for Stephanie, I even had alerts going to my phone every time her mom made a new post ( she did great by the way!) When she started getting better it was such a blessing!! God worked through Stephanie, he was always with her, and every single prayer was answered. Stephanie has since gone home from the hospital, and is doing wonderful. ------ So, the point of this post is Yes in LVAD life you will hasve moments of sadness, but goodness,  all the miracles, the close “family” we have with the LVAD community. it is just mind blowing! To have someone tell me I’ve help them through things, that they couldn’t have gotten through things without me and that our story has been an inspiration to them…it doesn’t get any better than that…

Peter Cetera - Glory Of Love (Lyrics)

Everything Happens For a Reason..Good thing to keep in Mind!

My Honey is Back on the Transplant List!!!

Yes that’s right, Jason is officially listed back on the heart transplant list as a status 1B. Of course it’s not a 1A, but hopefully we’ll get that chance on day! Jason had his first appointment last week, it had been 11 months!! Yes, there can be no doubt that God has watched over my Jason.  Dr. Shah said his heart looked the same now as it did last year, I can’t complain about that. Jason was so nervous about his appointment so  I was so excited everything went well. They did turn up his speed from 9600 to 10000 to give him more energy…and lordy be what a difference that made! Hopefully it will help him with his little spouts of forgetfulness too! We went to VCU/MCV on Wednesday to get a Right Heart Cath, but it ended up his INR was 1 point too high to do the procedure..ughhh better safe than sorry though I sure they know better than me. We’ll be trying again tomorrow, so Ill be going in with fingers crossed!   OXOX

LVAD One Year Anniversary

 One year ago today Jason had his Lvad Implanted. I still remember it like it was yesterday. When I first saw him after surgery, tears were just rolling down my face. I felt so sorry for him, all the cords, monitors, IVs  breathing machine, it was quite over whelming I wasn't prepared for what I saw at all. He was centered in the bed so I couldnt even kiss him. All I could do is touch his arm and face. Even though he was in the ICU I was certain I was going to be able to stay the night. I talked to the nurse when she came in and she let me know that I could stay a little bit longer, but I couldnt spend the night. I started crying all over again, I did not want Jason to be alone. She promised me than that she was his only nurse and that if  I wanted I could call every hour and she would hold the phone to his ear so I could talk to him, even even though he still had the breathing tube in and could not talk.My favorite day was the second day, they removed his breathing tube and the first thing he did was rub my arm and say that he loved me. It was the sweetest thing ever!
From that day on, there was no stopping Jason. He was up and walking the next day, and too proud to take pain medicine I might add... We went through the scary school  and hands on test...but we rocked it..together. Since that day Jason has just done awesome, and we have learned to adjust very well to LVAD life.
 Jason getting the LVAD brought our relationship to a whole new level, beyond what I ever dreamed of. I am thankful that there was a such thing as an LVAD, because at one time we didnt even know about it, all we were told is he had 3-5 years left. I couldnt believe that God gave me this perfect man, just to take him from me again. But he didnt though...and every day I'm grateful for tha( and I mean EVERYDAY!). We have been through alot this past year and although it hasnt always been easy ( by any means) , we put our trust in God and held on tight to each other. ...Real Tight!

Congratulations Honey ...you made it!! I hope the next celebration will be that of a new heart that God has chosen just for you...

Engagement Photos 2012

Hope you enjoyed!!

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

We can do this!

We Did it...New Insurance!

We Did it… Thank you Lord. Jason was told on August 7^th that he had been approved for the PCIP insurance. Now I don’t know all the ins and outs about everything yet and I can honestly tell you that I am scared. Our monthly payment is reasonable especially compare to others, but what gets me is the 20% that the insurance doesn’t cover. That’s still a lot, and I pray that we don’t have to pay that upfront. The average cost for the heart transplant, before and after care is a whopping   997,700.00. 20% of that is 199,540,000. !!! I feel better once I know what the co pays will be.

 I know in my heart that God will provide everything we need financially, so as of right now I am placing this in is hands and he will see us through.  In the beginning to this process, when medical  bills started piling up and as they still continue too. I told Jason we cant worry about the money or about how much we still owe. We pay a certain amount every month. But like I told him, we have to live and we have to have food on the table and such.  I’m sure anyone with medical problems are experiencing the same thing. It will all work itself out, but the important part is my Jason will be able to get off hold on the transplant list!

His effective date will be September 1, and Ill make an appointment for him to do back to the doctor that week. He hasn’t been to the doctor in so long, Ill will be interesting to see what they say. God has watched over Jason this entire time. He hasn’t had to go to the hospital at all. Infection free and everything..Praise God.

Even though when you have and LVAD (or anything for that matter) anything could happen at any time..BUT I will feel more secure knowing the doctors are checking on him every few weeks now, at least it will give me comfort that hes ok.

Im sure it will take him a few weeks of test and things before getting back on the list, but I will surely be looking forward to that day! One side effect that I see with the LVAD ( in Jasons case) is that he has gained weight, so hopefully that wont be an issue.

So the lessoned learned here is there’s always going to be something. Even after Jason gets as heart, (and he will, in Gods time of course) there will still be issues and there will still be fears. But as we can see things and issues may try to break our spirit, but you have to keep your head up and keep going and always…always have faith that God is with you and that he will make miracles happen.