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

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.

Confessions

I thought I’d write a post on things you may or may not know about me. We can always call it confessions of a LVADERS fiancé if you will, so here goes:

·         Sometimes I have mad days when I feel like life isn’t fair to me or Jason

·         Sometimes I really hate the 20 foot cord! It couldn’t have been a LITTLE longer?

·         I have days that I am full of faith that Jason will be here with me forever and days that  I’m really scared about it. Now I do believe no matter if you have health problems or not, when its your time to go, you will.

·         If Jason ever left this world before me, my children would be my will to keep going . If they were gone and moved out with families of their own, then that would be really hard. I have cried to Jason before saying I don’t want to live this life without him, but I know deep down that’s wrong.

·         I feel guilty when I do things just for me

·         I often feel overwhelmed
        Sometimes get tired of fighting for what’s right for Jason

·         If I am talking about Jason and what I feel for him, I can cry on a drop of a dime no matter where we are. It is very embarrassing for me, but I can’t help it.

·         I am over the top passionate about Jason in every aspect.

·         I thank God every day that he sent the perfect man to me, so I would know what unconditional love felt like.

·         Sometimes I look at him while he’s sleeping, and he just looks like an angel. But sometimes I look at him and I feel so sad for him, but I know I should just be happy that he is still here beside me.

·         I think God often for bring angels into our lives, and I love that I always know who they are.

·          Sometimes I wish that I had a normal life, but then again who really does?

·         I feel like My friends and family can’t even begin to understand my life emotionally. I often feel like I can’t relate to their “normal” life.

·         I am so proud of Jason for getting an LVAD.

·         I thank God for giving me strength to fight for Jason. He also always give me the knowledge to ask the right questions.

·         I know that God is always with me…ALWAYS.

·         I have complete faith in God that he will send Jason a perfect heart in his time

·         I am so happy when I hear of our LVAD friends getting a heart, but its hard not to feel sad that

·          it‘s not Jason’s time yet. I can’t wait for that day. I will be scared of the unknown, but I’ll also be so happy I can’t even begin to express it with words.

·         I know the God has a plan laid out for Jason and I and because of that we will always trust him.

·         I know that there is always a reason of everything you do and every person you meet.

I talk to a few LVADers though email, but one has always given me tremendous strength and for that I am thankful. In an email not that long ago, I guess you could say I was feeling defeated and down and this is what he wrote back:

          …….There is a slight defeatism in your words…excuse me while I slap you…sorry about that but defeat is not an option. There will be no surrender . There is only better days ahead, try to maintain a warrior approach for you both and all the gang…Also a good mind set helps, even in the darkest hours for you both, just hold on embrace each other and stay strong for each other

I almost cried when I read those words, they were so powerful. …he is definitely one of the angels I was talking about… and its times like this that I know God is with me…

Happy Valentine's Day Honey!

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

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

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

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

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

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

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

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

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

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

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

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

 you each  and every day of my life.

Happy Valentine's Day Sweetheart!

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!                                                           

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!

Signs of Blood Clots

Another complication with an LVAD, is the risk of blood clots, If you think you or your loved one may have a blood clot,  call your VAD coordinator ASAP.  Here is what to look out for:

• Swelling
• Pain
• Warmth
• Redness

Know the Stroke Symptoms

With having the LVAD a stroke is one of the complications that could occur. Learn what to look out for as a caregiver or yourself. If you think you or your loved one is having any of these symptoms DO NOT hesitate to call 911, Then call your VAD coordinator.

• Sudden numbness, tingling, weakness, or loss of movement in your face, arm, or leg, especially on only one side of your body.
• Sudden  vision changes.
• Sudden trouble speaking.
• Sudden confusion or trouble understanding simple statements.
• Sudden problems with walking or balance.
• A sudden, severe headache that is different from past headaches.

Something to Remember:

               “The will of God will never take you

           where the Grace of God will not protect you”

Greg Lowe

Greg Lowe celebrated the 10th anniversary of his heart transplant on September 21, 2010.
It's a rare week that goes by without Greg Lowe visiting the Cardiac Care Unit on Main 10. He's there to listen, sympathize, encourage and help heart patients and their families. He knows what it's like to have a very sick heart, a very long hospital stay, and receive a very special gift—a donor heart.
Greg's journey to transplant began in July 1997. He was 43 years old and father to eight daughters, ages six to 26, when he suffered a massive heart attack.
"I coded [cardiac arrest] in the ambulance, so they diverted me to MCV emergency department," said Lowe. "That was the beginning of my relationship with the incredible MCV heart team and a second chance at life. It has been a long road with plenty of bumps along the way. That heart attack pretty much destroyed the left side of my heart, so I became what they call a 'frequent flyer,' in and out of the hospital for surgery, procedures and medicine changes. In June, 1999 I was admitted so they could keep me and to await a matching donor heart. Fifteen months later, on September 21, 2000, Greg Lowe was transplanted. He went home within two weeks.
"The staff made this the most beautiful thing that ever happened to me," he said. "They were great to me and to my family. They educated us and helped us stay positive. That's very important, to stay positive and believe you will make it through. Every day becomes a gift."
"That's why I give back, why I have made volunteering my career. I would rather give back everything that has been given to me, to this institution, to the patients and their families, to the American Heart Association to help fight heart disease, to keep the technology growing. If I can be of any help in any way to people who come in and out of this hospital and have a new life, that's what I want to do."

• This is just one of the many people Jason met while at MCV. They met before his LVAD surgery, and came in the ICU the second day after surgery. The nurses think alot of Greg at MCV. Only family and Greg were let in the room the first week post LVAD.

Be an Organ Donor!



LET LIFE GO ON

To remember me...
The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying.
At a certain moment, a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.
When that happens, do not attempt to instill artificial life into my body by the use of a machine.
And don't call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.
Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes a woman.
Give my heart to a person whose own heart has caused nothing by endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body, and find a way to make a crippled child walk.
Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.
Give my sins to the devil. Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.



The dreaded switch over..for me at least

It was Tuesday evening at MCV. At this hospital they always like for you to take the test and all the "hands on" test the day before discharge. So I went in the room feeling really good UNTIL they told me  that I had to totally switch out the system controller.( I had to do this because in case of an emergency and Jason was unconscious I would know how to do it.) Well,  I'm telling you I was so scared, I seriously thought I was going to start crying ,but then the next thing I knew the teacher was saying do it right now. Jason kept saying..right now? right now? I did it though without hesitation, it went as fast and as smooth...like a dream. I said " Honey we have taken this relationship to a whole new level!" I did great, and Jason was so proud..

Off to the Pumpkin Patch!

The headed off to the Pumpkins Patch today with Kiddos in tow. Jason's been doing wonderful. I was a little scared about the tractor ride, but thankfully it was nice and smooth.

Jason and I

Austin, Emma and Autum

All the Kiddos!

HAHAHA...So funny!



Austin and Jason
I love this one!







































Take a shower?...NOT

I wanted to address this because some of our LVAD friends do take showers.
Everything fits in this bag and you'll just have the drive line cord exposed.  Of course you can't even do this until the doctor clears you. Our hospital and Jasons doctor say no to taking showers, they expressed that It was "just too risky". Its all in what you are comfortable with. Like I said,the LVAD friends that I do know that do take showers..well that's comfortable for them. We choose not too. It's not wonderful not being able to take showers or baths, but the awesome equipment is why Jason is here today and we are not willing to do anything to compromise that.

What we choose do is:

•  I hold the system controller while he washes from the waist down.
• To wash his hair, he just kneels outside of the bathtub and I wash it that way or he will and I'll hold the system controller
• Sponge bath

Shower Bag (just one model)

Heart Walk 2011

We decided we were definitely participating in the Heart Walk coming up. We raised $ 700.00, It may seem small, but I was so excited. How my girlfriends get the chance to honor their boyfriend  like this???
Not to mention, I was also honor all of the wonderful friends we have meet along the way..and Jason's Dad Dudley. I think Dudley deserves a post all his own , so I'll tell you about him later. Jason's sister,  Misty and her family joined us in the walk. I was so filled with pride when ALL the kids there wanted to walk in Jason's honor..It was so sweet, and they did awesome! Jason stayed back with Austin at the VCU tent. He got to see some friends he knew from MCV, and also met some new people. It was a great day..very emotional, but I did good and didn' cry..lol

The two on each end are brother and sister. He now has a new heart and
his sister just got a defibrillator implanted.

This is Greg Lowe,  Jason met before his surgery in the hospital.
He has had a heart now for 11 years.

Heart Walk 2011 Pictures



" I'm walking for: My Boyfriend Jason"

 


This is half of our family, and Jason's sister, Misty's family



Jason and I

 

Love this picture!

The kiddos and I

Jason...3 days out!

Jason is doing awesome, we went to a family birthday party today and I was so glad he was able to make it!..



Jason and I



Yeah...He's awesome



See ya later MCV...for now anyways

Jason came home this past Wednesday. He has transitioned wonderfully. I think I was more nervous than him. Our bed is high, so for right now he does still need the step stool to get in the bed. Oh --and drive line care first few nights?? Expect to make mistakes...and don't worry about the cost of the supplies (like Jason does) Just start over, its ok you'll get the hang of it (and so will I) It is alot different doing it totally by yourself though.. I do have to say its been awesome having him home, and he's been sleeping soooo good!

The countdown is begining!!!

Jason will be coming home soon, and I'm so excited I can hardly contain myself! We've gone through all the testing...Aced...with flying colors of course! I've got the bedroom set up..now all I need is Jason!



Jason is out of the ICU

Jason is now on the "step down" floor from the ICU (which still looks like the ICU to me) Only difference is we can come see him at 12:00 Am. If we want AND spend the night. He is doing great, he has got really comfortable with changing over to batteries and back. The doctors and nurses are so surprised with how quick he is recovering, they can't belive it! He's been walking everyday, and going down to the activity room. I loved the night when I was able to get in the bed, I loved being back in his arms again..OK well maybe just one arm, but I still loved it. It was so nice. I had planned to spend the night, but still in the step down unit, they are still in and out all night long. They came in on night at 12 am and asked if  he could stand up so they could weigh him  ...lol REALLY?  I know they are only doing their job, but really I don't know how someone sleeps in there...BUT for the record I will say again ...I do understand...