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!