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…

The Christmas Story of the Birth of Jesus...

The Virgin Mary lived in the city of Nazareth. One day when she was all alone, Angel Gabriel appeared to her and told her, “Don’t be afraid. God has chosen you. You shall have a son, and you shall call him Jesus. He shall be great and shall be called the son of God”. Mary was very happy with the news given to her by the angel.

Joseph the carpenter and his wife Mary went on a journey.  When they arrived at Bethlehem in the evening, Joseph wanted to find a comfortable place for his wife Mary who needed to rest and who was awaiting the birth of her promised Son.   The only place they found was a stable with camels, donkeys and sheep.  It was a quite night. Soon after midnight, Jesus was born under the clear sky of Bethlehem.

After His birth, the angels were singing in the sky, which was lit by the light of heaven.  Nearby there was a group of shepherds.  An angel appeared to them and announced to them the birth of Jesus Christ.  The angel said, “Do not be afraid.  I bring you great news.  Today was born a Savior, who is Christ the Lord”, and the angel showed the shepherds where the newborn baby was.  The shepherds rushed to the stable to see the newborn baby.  After seeing Him, the shepherds left the stable.   They praised God and told everybody what they saw on this first Christmas morning. 

Joseph and Mary went to Jerusalem to present baby Jesus to God in the Temple.  As they were there, they were approached by an old man, who was known to be always watching and praying for the coming of the Messiah.  The old man whose name was Simeon,took baby Jesus in his arms.  As he looked at the baby’s face he knew at once that his prayers were answered.  He said, “Oh Lord, my eyes have seen your salvation”.

A Visit from St. Nicholas

T'was the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse;

The stockings were hung by the chimney with care,
In hope that St. Nicholas soon would be there;
The children were nestled all snug in their beds,
While visions of sugar-plums danced in their heads:
And mamma in her kerchief, and I in my cap,
Had just settled our brains for a long winter's nap,---
When out on the lawn there arose such a clatter,
I sprang from my bed to see what was the matter.

Away to the window I flew like a flash,
Tore open the shutters and threw up the sash.
The moon, on the breast of the new-fallen snow,
Gave a lustre of midday to objects below;
When what to my wondering eyes should appear,
But a miniature sleigh and eight tiny reindeer,
With a little old driver, so lively and quick
I knew in a moment it must be St. Nick.

More rapid than eagles his coursers they came,
And he whistled and shouted and called them by name;
"Now, Dasher! now, Dancer! now, Prancer and Vixen!
On, Comet! on, Cupid! on, Donder and Blitzen!
To the top of the porch, to the top of the wall!
Now, dash away, dash away, dash away all!"

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky,
So, up to the house-top the coursers, they flew,
With a sleigh full of toys, ---and Saint Nicholas, too.
And then in a twinkling I heard on the roof
The prancing and pawing of each little hoof.
As I drew in my head and was turning around,
Down the chimney Saint Nicholas came with a bound.

He was dressed all in fur from his head to his foot,
And his clothes were all tarnished with ashes and soot;
A bundle of toys he had flung on his back,
And he looked like a pedlr just opening his pack.
His eyes how they twinkled! His dimples how merry!
His cheeks were like roses, his nose like a cherry;
His droll little mouth was drawn up like a bow,
And the beard on his chin was as white as the snow.
The stump of a pipe he held tight in his teeth,
And the smoke it encircled his head like a wreath.
He had a broad face and a little round belly
That shook, whe he laughed, like a bowl full of jelly.
He was chubby and plump, ---a right jolly old elf---
And I laughed when I saw him, in spite of myself.

A wink of his eye and a twist of his head
Soon gave me to know I had nothing to dread.
He spoke not a word, but went straight to his work,
And filled all the stockings; then turned with a jerk,
And laying his finger aside of his nose,
And giving a nod, up the chimney he rose.
He sprang to his sleigh, to his team gave a whistle,
And away they all flew like the down of a thistle;
But I heard him exclaim, ere he drove out of sight:
"Merry Christmas to all, and to all a good night!"

Clement C. Moore 1779-1863
Written in 1822

Yes Virginia...There is a Santa Claus

Jason and I watched this little movie last night on NetFlix. Its about a little girl that wanted to know that Santa Claus was real, and wrote her local paper. This is based on a true story. After watching the movie ( which is only about 30 minutes) Life is full of believing in things...seen and unseen.

THIS IS THE ARTICLE FROM THE SUN, 1897

VIRGINIA O'HANLON 1889-1971

FRANCIS P. CHURCH (EDITOR)

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

                                                                                                       

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!

To my Jason...

Jason's Car..Spreading the word..

LOVE IT!!!

If your loved one has heart problems..Dont look to the internet for comfort!

You find out that your loved one has a heart problem. The first thing is to search everything on the Internet to find out everything you can about the diagnosis right? WRONG! The best thing to do is to call the Cardiologist office, and ask if they can recommend sites for you to become more knowledgeable of the diagnosis.

I regret to say that I did not do this, and I wished dearly that I had. The Internet will scare you half to death, and all I kept doing was trying to find a better site that had better news than the one before.

I am embarrassed to say this, but at one time I didn't want Jason to receive a donor heart because I thought with the LVAD period, that he would have more time with me.( See what it can do!)

Live and learn... Some good sites to go on If you know your loved one needs an LVAD are: Thoratec.com ( the makers of this awesome equipment) and Mylvad.com. Now I'm sure there are plenty more, but those are my favorite.

They will also have classes at the hospital where you loved one will be receiving the LVAD, but I have always preferred LOTS of information!

Love Quotes...

Once in awhile,
Right in the middle of an ordinary life,
Love gives us a fairy tale.
~ by Anonymous ~

Love is not a matter of counting the years...
But making the years count.
~ by Michelle St. Amand ~

You can give without loving,
But you cannot love without giving.
~ by Amy Carmichael ~

Love doesn't make the world go round,
Love is what makes the ride worthwhile.
~ by Elizabeth Browning ~

 My love, you know you are my best friend.
You know that I'd do anything for you
And my love, let nothing come between us.
My love for you is strong and true.
~ by Sarah McLachlan ~

If your Having Heart problems.. Don't Settle for the B Team..Get the A Team!

First off, to those of you that don't know Jason, he is a very laid back, go with the flow type a guy. He thinks EVERYONE has his best interest at heart. In an earlier post I mention that Jason had a doctor, that I didn't care for too much. He was the doctor that told him that he only had 3 to 5 years ( in 2009)  left and did not want him to working,because he wanted him to enjoy the rest of his time here.

When I met this doctor myself in 2010, I wasn't impressed. He seemed very irritated with all the questions I was asking and always seemed like he was in a hurry. When I always at the hospital with Jason in May 2010, I have no doubt that God lead me to every question I asked, and he gave me the strength not to back down.

When I asked him would Jason be holding my hand, and rocking beside me in a rocking chair when he was 60..the doctor said no. I can't even begin to describe that feeling I felt. One thing Im sure of though. God DID NOT make me wait 35 years to find my perfect love, just to take him away from me..

Oh- and I will add that the doctor NEVER told us about the LVAD!!

Thank goodness we found the A team at MCV. They are the best doctors and nurses and are more than happy to answer any questions I have. That meant alot to me..because Its not just Jasons life..this involves everyone that loves him. 

The message that I want you to take from this post STAND UP for your loved one. I have stand up for " my Jason" more than once, and he didn't always like it. You know what though?  I will never regret fighting for the best care for  him, because I always do..and always will!

The Dating Divas "Printable Compliments"

by Corie, from The Dating Divas!

Doesn’t everyone love compliments? It is one sure way to make someone’s day. Giving your spouse a sincere compliment shouldn’t be difficult to remember, but if it is we have the thing for you! Kind Over Matter came up with a Free Compliments poster you can print out to use at home, work, school, or wherever you think the love needs to be spread! Print it out, hang it up, and get ripping off those compliments and giving them away.  To print your own compliment page, visit Kind Over Matter.  If you want to add a little spice to the compliment page,  you can spray with your perfume or cologne.  Then when you spouse carries around the note throughout the day, they will be reminded of you.

Sex & Intimacy with an LVAD

Yes...That's right I'm going there!  I'm sure its one of those things on every one's mind, but no one asks. I will add that I did have reservations about posting this, but the truth is I'm sure that there are plenty of people are wondering about this..so wonder no more.

After Jason got the LVAD implanted, I was embarassed to ask his doctor when we could make love again..( I know, I'm silly...but I bet I'm not the first!)
 Let me be the first to tell you I was terrified to have sex with Jason after the LVAD.(..and he wasn't scared at all!)  I was so scared I was going to hurt him, or move too quick..or worse get hung up in his equipment! ( none of these things ended up happening!)

 The best thing I can tell you is to listen to your partner and they will let you know when they are ready. Now, the first initial time having sex might be a little awkward,  It is going to be a little different, but you learn to try different things to make it easy as possible.

 I always make a point to always love on Jason. I never wanted him to think for one minute that he wouldn't be attractive to me anymore after the LVAD. I always tell him how much I love his body..Scars and Driveline included! I thought our relationship was strong before..but now it has reach a whole new level..and I love it!If anyone has any other questions feel free to email me at ourlifeourlovehislvad@gmail.com!

My 2nd HeartBeat...

Don

The whole purpose of our blog is the find other receiptants of LVADS, but  it is also wonderful to speak with people that have already gotten a heart transplant. Don had a heart transplant four and a half years ago. He also volunteers at the Cleveland Clinic in the transplant center. Learn more about his story on his blog! He has also featured us on his blog..which was just the sweetest! Thanks Don!

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

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

These are a few little things to help you:

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

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

Thanksgiving Is For Being Thankful!

T…is for being Thankful to the LVAD that you are with us here today.

H…is for being my Hero in more ways than one.

A… is for being so Awesome, I’m so lucky to have you!

N…is for Never giving up. I’m so proud of you!

K… is for your Kind spirit. You never seize to amaze me.

S… is for Saving yourself, and having the strength to get the LVAD.

G…is for being such a Giving spirit. You’re such a good man.

I… is for being such an Incredible man.

V… is for us all being Victorious… we appreciate everyday with you.

I ... is for realizing that some things in life are not Impossible.

N… is for keeping active Nonstop… It does the LVAD good!

G… is for being Grateful, that we have such a wonderful life.

Find the nearest VAD Hospital Near you..From MyLVAD.com

MyLVAD.com is a great site! They have been so good to us! ...YAY!  These are a list of hospitals that can totally accommodate Jason in case of emergency. I just went with the 100 mile radius, but I was still surprised that only three came up!

Find a VAD Hospital or Support Center Near You

Virginia Commonwealth University Health System (This is where he had his surgery done)

• 1200 E. Marshall St.
  Richmond, VA 23298, US
  (804)828-0100

• Supported Devices: Heartmate II® LVAD, Jarvik 2000 Flowmaker
• Sentara Norfolk General Hospital
  600 Gresham Dr.
  Norfolk, VA 23507, US
  (757)388-6005
  Supported Devices: Heartmate II® LVAD, HeartWare® Ventricular Assist System
• University of Virginia Medical Center
  1215 Lee Street
  Charlottesville, VA 22908, US
  (434)924-3627
  Supported Devices: Heartmate II® LVAD

A Hunting We Will Go...

Jason has always been avid hunter and fisherman. His biggest fear about the LVAD was that he wouldn't be able to go hunting. He cannot be in Temperatures below 32, so far we have been lucky and it has been above 32 every day he wanted to go hunting! Jason had his surgery on the 26th of September, he was discharged on the 12th (Wednesday) of October. We went Hunting the following Saturday. Yes, I know what you're thinking because I was thinking it too, BUT I wasn't going to take that away from Jason.

I decided to get my hunting license this year, so I'd always be able to go hunting with Jason when I wasn't working. Jason NEVER hunts alone. It works out well because alot of his friends are off during the week, so while I'm working..he's hunting! On the Saturday after his discharge when we went hunting we sat in a ground blind in lounge chairs. It was in the 50's that day. We didnt end up getting anything that day, but I have no doubt that Hunting is good for Jason's soul.

On October 27th, Jason got his first deer of the season with a Crossbow, I was so happy for him! I was at work, but I wished more than anything I could've been there for that. Jason has already graduated from the ground blind to the tree stand, I can't say I'm trilled about that BUT again, this is a time were I pick my battles. I need to know that Jason will know his limits, and just let it roll off my shoulders.

We are going together this Saturday and on Thanksgiving day...Wish us luck!



In his element...



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!

Jason is on Facebook and Twitter

I never thought I'd see the day..well I guess I wouldn't have If I didn't do it..Haha. Jason's name on Twitter is Jasonslvad and he has a page on Facebook under his name and a Our Life Our Love His LVAD page. I mostly write on  Our Blog and Twitter,but I have faith he'll get into it before too long! Haha. We are trying are best to be able to meet alot more LVAD friends. The friends we have met so far have been so helpful in so many ways. We still haven't found anyone in Virginia yet so that will be exciting when/ if we do! Don't forget to Join/ Follow all of Jasons pages when you get a chance!

The Dating Divas ( The LOVE part of our life)

Its a very good reason why our blog is named how it is. Not only its this blog about Jason's LVAD and our journey, but It also is here to give others a "sneak peek" into our lives.
With that said, here is a "sneak peek" into the love part in our lives:

Jason still gives me butterflies, and still miss him ,( even when he's gone for a few hours.) I still LOOOVVVE kissing him, and I still get excited to have date night with him. To put it simple, I am over the moon in love with Jason!

I ran across this site called The Dating Divas. It is a site that give you ideas for date nights, and little special things that you can do for someone you love. They have LOTS of printables..yes my name is Shannon and I'm addicted to Printables! I wrote them and shared our story with them, and wanted to make sure it would be ok to feature them every once in a while, Here's what they wrote back:

Hi Shannon!

Thank you for sharing your story with us!  We wish you and your sweetheart the best of luck!  That is so neat that you are keeping a blog to tell the story of your journey!  :)  We were happy to hear that some of our ideas have helped you out as well.  Hopefully we can keep those ideas coming!

We are flattered that you would even ask if you could feature us.  Thank you!  Of course you can!  We definitely appreciate the "link love" back! 

Good luck with everything! Have a wonderful night!

Lotsa love,
Tara Carson
The Dating Divas

  Here is the Bad Day Box, I made Jason when he was in the hospital, He loved it so much!

THE DATING DIVAS:

Why not create a “Bad Day” box for those rainy days?? I saw this idea on this blog…and fell in LOVE with the concept! I seem to have a lot more “bad days” than my husband….maybe because I am a sucha GIRL and crying always seems like the best thing to do at the time….and then the next best thing is to think of a solution! {lol}  Having a box on hand – filled with things your spouse LOVES….is the PERFECT idea!!  You are basically preparing for unexpected things that we all know can {and will} pop up in life.  Call it an “emergency preparedness kit for emotions”.  {WINK!}

My husband does OCCASIONALLY have bad things that pop up and get him down…..not very often….but I decided it would be a great idea to be prepared for the next time….

I literally made this in LESS than 15 minutes!!  Er….once I gathered the stuff, that is! 

I found these LOVELY boxes at Michael’s Arts & Crafts…for a buckaroo!  Can you believe it?  I think they normally sell for around $5…..but grab a 40% off coupon that Michael’s always gives out &  use that.  I LOVED that these boxes already had decorative designs on them.  I was preparing myself to mod podge cute paper on….but this saved me a lot of time, effort, & money!

Materials Needed:

Mod Podge

Foam Brush

White Cardstock

THESE Cute “Bad Day Box” Printables {Black Version}

…..OR……

THESE Cute “Bad Day Box” Printables {Brown Version}

You will also need…

THESE Cute “Love Note Card” Printables {Black Version}

…..OR……

THESE Cute “Love Note Card” Printables {Brown Version}

….and don’t forget to purchase or make a BUNCH of FUN items to place inside that your spouse will LOVE!

Once you print out these printables…..

….cut out the fun sign & Mod Podge it on the front of the box.  

You can also cut out the little tag to place inside the label holder.

Next…..cut out apart the love notes, write on each one, roll them up, and tie them with a pretty ribbon!

Last of all, place the love notes AND all of the fun items in the box.

I made one for each of the diva's hubbies for our annual Diva Gift Exchange!

You are DONE!  Now, hide it away for that RAINY day.  I am planning on pulling mine out the next time my hubby has a rough day at work…..and since he’s Mr. Cheerful….it might have a little dust on it by then!

*sigh*  That may be a while.  lol  For ANOTHER great craft that would cheer up your spouse….check out Lisa’s “All About You” post.  It completely made her husband’s day…OR her “Rough Day” Recipe post….ANOTHER fab idea! 

BTW – If you are wanting to create something like this but you don’t have a craft store close by – there is a great online store called, www.CreateForLess.com.  They sell a LOT of the items I used in this post for such great prices!   Good Luck!!

Subway Art with Tagxedo!

I ran across this great site today called Tagxedo.com. You can make Subway Art on this site for FREE..Gotta love that. I though it was so neat that you can either add your own words or they will automatically take the words from a URL address, so that's what I did. You also have a few shapes to choose from I chose the heart..of course!

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.

MY HEARTMATE 2 : The Creed of an LVAD Recipient. Thanks for sharing Joshua!

 My Rifle: The Creed of a US Marine
by Major General William H. Rupertus USMC, Ret.
(written following the attach on Pearl Harbor)
has been adapted for the respect of a HEARTMATE II LVAD and the Recipient.
My HEARTMATE II: The Creed of an LVAD Recipient

This is my HEARTMATE II. There are many like it, but this one is mine.

My HEARTMATE II is my best friend. It is my life. I must master it as I must master my life.

My HEARTMATE II, without me, is useless. Without my HEARTMATE II, I am useless. I must use my HEARTMATE II honest and true. I must remain more diligent in diet and form than my enemies that attack my health and heart. I must act before it acts upon me. I will...

My HEARTMATE II and myself know that what counts in this war is not only the blood that pumps and flows, the progress or setbacks. We know it is also for the general good of future generations that count. We will...

My HEARTMATE II is human, even as I, because it is my life. Thus, I will learn it as a brother. I will learn it's weaknesses, it's strengths, it's parts, it's accessories, it's purpose and it's flow. I will ever guard it against the ravages of weather and damage as I will ever guard my legs, my arms, my eyes and my heart against damage. I will keep my HEARTMATE II clean from bacteria and have the spare equal and ready. We will become part of each other. We will...

Before God, I swear this creed. My HEARTMATE II and myself are the defenders of my well-being. We are the masters of our enemies. We are the saviours of my life.

So be it, until victory is achieved and there is no enemy, but peace and a healthier life!
Taken from: http://fromthebottomofmylvad.blogspot.com

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

I love you more than enough...

I decided to write this knowing that their 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 sacrifice's 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 everyday.

last but not least..

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

Drive Line Scare!

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

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

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

Jason Birthday February 2010

Jason's birthday was a BIG deal this past year. So, I knew I had to make it special for him. Hearing him say " I made it " ( saying he made it to another birthday ) made me so happy that I made a big deal out of this day! You can tell from the pictures that he was quiet swollen, but still at this time we didn't know that some of the medicines had already stopped working for him.

The Birthday Boy!

He LOVED his birthday cake!