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...

Know your Drive Line Care.

Follow the same techniques that the nurses teach you at the hospital, I only did it a total of 3 times while he was in the hospital. The "Hands On" test they give you are great. They WILL NOT let you, as a caregiver go home not knowing fully what to do.
The most important thing is preventing infections. 
Infections are the number one complication in having an LVAD.  I was so scared of something happening, but all you can do is be is careful and keep the field sterile.
Take a good look at the drive line exit site at least once a day. We do the drive line care at the same time every night. We choose to do this once the kids were asleep, so there are no interruptions.   While you are during the drive line care look for signs of infection like:

• Redness
• Swelling           
• Drainage (blood or pus)
• New drainage where there was not any before
• Foul odor
• Increased warmth at the site
• Temperature > 100° F

When I finish puting the tape over the Gauze, I still date it, as they did in the hospital, and I always draw or write something like:



I only did this one once..lol


I love the time was have together during the drive line care, it give us time to slow down and talk about our day !



Going to LVAD school

Diagram of LVAD

One of the requirements in Jason coming home is that I go to the LVAD classes, take test and do hands on testing. So I started reading the book and watching the DVD that MCV gave me. I learn alot from the classes available at MCV.

  

In this picture you can see the system controller that is worn at the waist, the two battery packs that is worn on both sides, The drive line is the cord coming from the heart and exits to your lower abdomen and the Famous LVAD.

Cardiac ICU 3rd Day

I had to go back to work today :(  When I arrived in the ICU,  I was shocked to hear that he had already been up and walking that day! It didn't occur to me until then ..I'm dating Superman!

Yes...Thats my Jason!

Cardiac ICU Second Day (Tuesday) ...and Milestones!

I arrived at MCV at 7:50.  Ten minutes before visiting hours, but they let me in anyways...YAY! He was still following commands and the nurse said they would be shutting off the breathing machine around 2,to see how he was breathing on his own. He did awesome, ( his oxygen was at 98%)  so at 4:00 they took the breathing tube out! Less than 24 hours after surgery..that was great! He had tried to open his eyes on and off that day, but after getting that breathing tube out, he had them all the way open. It was so nice to see those beautiful blue eyes of his! The first thing he did was rub my arm and tell me he loved me..it was the sweetest thing ever! He was still in and out, and we kept encouraging him to rest.

LVAD Surgery Night...

We were finally able to go in ans see him at 8:30 Pm. Even though I tried my hardest to prepare myself, It was still so hard seeing him like that. He had an IV in his neck, arms,  and breathing tube. The doctor told us that he was going to be really swollen, but he wasn't . He looked as perfect as ever. They also had told us that they may not be able to close his chest right away, but they were. I was so happy about that. I took his hand and asked him if he could hear me and he shook his head yes. That just meant the world to me. The nurse told us that he was trying to wake up in the elevator right after surgery..They just couldn't believe it. He followed all the commands from the nurse..that was awesome. His eyes were still closed, but at least we knew he could hear us, and that was all we could've hoped for.

I tried my best to stay the night, but the nurse said people were going to be in and out all night. Oh yeah about that time the tears started flowing...I didn't want to leave him. Jason's sister, Christy came over and just held me. It was so touching, I'll never forget that.  Everyone left and  I just stood there touching his face and holding his hands. I couldn't kiss him because of the way he was laying, I didn't like that one bit!

The nurse and I talked a little bit more. She said the OR report looked great, and was short and sweet. He didn't need a blood transfusion, but she still couldn't understand why he kept trying to wake up. She said the anesthesiologist  said he had given him plenty medicine to keep him sleep. I have to say, I didnt expect him to be doing so great, but I'd didn't surprise me...Thats my Jason!

I again started crying when I was about to leave and I'll never forget what the nurse said.. she said   " Shannon I will be here with him all night long, if you want to call every hour or can. If you want to call and just talk to him, Ill put the phone up to his ear, hell be able to hear you. Of course that kind of kindness just made me cry even more,  it was so sweet.  She gave me to strength to leave, she was my angel that night...

My little sleeping beauty...

LVAD DAY!

I got to the hospital at seven that morning, they had let us know that they would be taking him down to Pre-Op about 11:30- 11:45. Jason was still laying there looking cool, calm and collected!  They took him down at the scheduled time, before that time everyone was in to see him off. I think I must have kissed him 10 times...in a row! All the family went to the surgery waiting area, and tried to stay busy talking, eating..etc. We didn't hear anything until 4:00- 4:30 PM. They called to say that they were just starting to open him up now. They called again at 7:30 and told us, that the surgery went great, and that he would be going to the Cardiac ICU shortly. Patty and I just hugged each other..HE MADE IT THROUGH!

Jason is MCV bound..The first week

In the first week at MVC was just getting everything for the surgery. All the pre- testing, classes..etc.
They finally told us on Wednesday that the surgery would be scheduled for Monday Septemeber 26th.
I think the only time he was alone is when he was sleeping. Even though his mom took off that week, it was still so hard to go to work everyday knowing the only place I wanted to be was with him...

Jason Pre- Surgery

Pre- Hospital Night!!

The night before he went in the hospital we made plans to go out for dinner. I had to give him one last night of his favorites..Steak and Ice Cream! Thank goodness we left as soon as I got home from work because we had to take a break between the dinner and the ice cream! The MAIN plan we to keep Jason as busy as I could to try and keep his mind off of things. After everyone left that night I told him he needed one last bath.( he's more of a shower guy!) This was the funniest part. Jason was sitting in the bath and he said  " Shannon, I don't think I'm going to miss taking baths..I'm too big for this tub anyways.. It was so cute.

Fast Forward... September 2011

Jason went in for his appointment to get an Angiogram. *Angiogram is an x-rays of blood vessels it uses a special dye and camera (fluoroscopy) to visualize the arteries on the surface of the heart to see if any of them are blocked. The test showed the Jason didn't have any clogged arteries, but he had so much fluid around the heart that they did not want to wait any longer..He is getting the LVAD, and he is going to be admitted  to MCV in 5 days to start draining the fluid off of his heart.

Seriously, I could not grasp the news I was hearing. I knew this day would come, but I sure thought I'd have more time. I was so excited, but scared to death at the same time. They told us that after the surgery he would be in the hospital for 21 days...21 days?????? I cant stand to be away from him for 21 hours! Not that I'd be totally away from him, but I hated that I wasn't going to be able to fall asleep with him next to me every night.

Welcome

Welcome to our blog! I have been meaning to get this started for a while now. You will see alot of post from me ( girlfriend/ caregiver) and also Jason. I have to say, I was quiet surprised at the limited number of caregiver blogs. Along the way we have met many LVAD friends, but I have to be truthful when I say, I felt alone as his caregiver. I am hoping to meet other caregivers, people to share stories with and lean on for support. Many have said, that it is just as tough on the caregiver as it is one that has the LVAD. I have to say mentally, yes , it is just as tough for me as it is on Jason. I will get back to that a little bit later because I have ALOT to say about that.

As two families coming together there are plenty of kiddos to go around. We have a total of five between us. Austin 15, Austin 14 (yes two!) Autmn 12, Mason 6, and Emma 2. They are all truly amazing kids.Thank goodness they are the kind of kids that totally adjust to any situation they are put in (yes, we are blessed!)

 Jason  has three  sisters, Misty, Christy and Sarah. His mother's name is Patty and his father's name is Dudley.
As for me I have a twin brother, Robbie and a sister Heather. My mothers name is Linda, and my fathers name is Bobby.  I'm sure you will be hear all of these names often..

In the days ahead, I will basically be trying to just catch you up on our journey so far. I've got alot to say! 
Hopefully this will be a blog this makes you laugh, cry, feel supported and strong all at the same time!

Emotional Wreck.. May 2011

Once Jason was released, the weeks following were VERY emotional for me. I never cried much in front of Jason, and he was the same way. I tried my best to keep a “strong face” on at work, but that never worked out too good for me. We both decided that It would be better If he just lives with me, that way since my father lives with me it would always be someone there to keep an eye out for him. It helped out a lot because If I was ever scared because Jason hasn’t called or texted, I could call dad and ask him to check on him so It worked out very well.  I think it was about 2 days after he had gotten release from the hospital. We were in the living room watching TV,  Jason was rocking in the rocking chair and Emma and I were laying on the couch. Jason smiled at me and looked at Emma and then he said “ Emma’s not even going to remember me Shannon”. I didn’t say a word, although I felt like my heart had just been ripped out. That night after I put Emma to bed we sat in the living room together and I just lost it. Like not being able to catch your breath type of crying. . Jason said” Shannon we have to stay strong, we can’t do this”.  I know he doesn’t think of crying as a weakness well at least for a girl even though I’ve tried to convince him that It’s okay for a man to let go and just get at all out. I haven't cried like that since that night...well in front of him anyways...

The Turning of Events... May 2011

Three weeks previous to our 1 year anniversary Jason began coughing a lot, Of course he just blamed it on the dust at work. (He worked at a Steel Mill) I kept asking him to go to the doctor, but he was so afraid that the doctor would put him out of work that he kept putting it off and putting it off. 

Finally, our anniversary came.  We planned to leave to go to dinner at 7 ( the restaurant we wanted to go to closed at nine) He was in the  bedroom getting ready and I was in the living room watching TV.  I went back into the bedroom about thirty minutes later and I see him struggling to get dress so we could go.  It scared me so bad I told him not to worry about getting dressed that we would go another night. The next morning I made an appointment with his PCP and took him in myself.

When we arrived at the doctors to performed an EKG  * a test that checks for problems with the electrical activity of your heart. He told us that they believe is defibrillator was firing and sent us straight to the ER. When we arrived at the local hospital, he receive another EKG, started an IV with a diuretic, and received a Chest X-ray.

When the doctor came back with the results they said that he had fluid around his lungs and heart, and three blood clots. They admitted him that night, which he wasn’t happy about at all. ( If he was a dog, he would’ve been growling) He went in on a Wednesday, and he was still hoping to be out by Friday, because he had to work the weekend. Of course he didn’t… He remained in ICU for 5 days (the nurses there were sweet enough to let me spend the night a few nights) Jason lost 20 lbs of fluid in that week and was release after 7 days, still with blood clots. (Which scared me) 

 I will share a little something that that doctor said to me while he was in the hospital. Jason, his mom, Patty and Misty one of his sisters was in the room. The doctor came in (which I will leave his name out) and was talking with us. When Patty asked the doctor how much time Jason had (we didn’t know about the Lvad at this point) the doctor hesitated. So I spoke up and said “ I just want to know will Jason be rocking in the rocking chair beside me when I’m 60 years old?”  The doctor said no.  I felted like knocking him down in the floor!  I kept thinking who does this man think he is ??? He’s not God.  So, needless to say, I don’t like that doctor, and I haven’t seen him since…Yay!

March 2011

Jason had only been at work for a few months when I started seeing a change in his condition.  We used to go on walks after dinner. One night we had just walked across the road and he said he couldn’t walk anymore. ( It took A LOT for him to say that)Of course he played it off like he had eaten too much, but a lot of times I knew a lot more than what he was telling me.  See, you have to understand Jason is a mans man. He wants to be , (act) strong  not complain, and do everything a normal person without CHF can.

 

2010 Shannon & Jason

 Jason and I met in the summer of  2010. Just by looking at him you would never believe that he was sick.  Now,  I would be lying if I said I never had second  thoughts about dating someone, especially when he told me that one doctor had given him just 3- 5 years left to live.  I’ll never forget I was talking to a dear friend of ours asking her opinion. I’ll never forget what she said. She said “ Shannon you cant live your life being afraid, if you like him..go for it!” Well of course I did,  “go for it”, and I’m so glad I did.



SMILE!!!



Our relationship for the first 8 months was VERY normal,  Other than going to doctors appointments every few months . He still was very active with hunting, fishing, bicycling, walking running, football, etc. He had even gone back to work. I saw a different man when he went back to work. He was so happy..  his spirit was lighter.

My Birthday Night, June 2010

2009..The begining

In 2009 Jason went to the hospital with flu like symptoms.   He was told at that time that he had          cardiomyopathy .  *Heart disease is called cardiomyopathy and it's cardiomyopathy that causes heart failure. Jason spent weeks in the hospital and also had a implantable cardioverter-defibrillator (ICD)  implanted .* An ICD is a small battery-powered electrical impulse generator which is implanted in patients who are at risk of sudden cardiac death due to ventricular fibrillation and ventricular tachycardia. The device is programmed to detect cardiac arrhythmia and correct it by delivering a jolt of electricity  . He was sent home with medication that included diuretics, ace inhibitors and beta blockers, just to name a few. The doctor at that time told Jason he was no longer able to work.

This is a picture of the ICD Jason has implanted