Away

Most people would think, when they hear "My dad is getting his heart ripped out of his chest in a week" or "My dad is in the hospital with a robotic heart" you would think that once the surgery is over, the hard part is done with.

I got news for ya, your wrong.

The hardest part is not seeing dad for days at a time, and seeing him have to endure the medications they give him that make him feel bad, and seeing mom run around trying to get everything done that she hasn't done on a regular basis, pay bills, clean the house, cook, ect. Most people look at the kids and think how horrible this is for the kids, and how hard it is on them. It isn't half as hard on us as it is on my mom and dad, they are the ones that have to keep everything else going while this is going on, while trying to keep up with what is going on with the TAH. Thanks for reading.

Rich

Update on Dad

I know Mom and Dad probably don't have much time to post updates on Facebook and such, so I'm trying to keep up here.

Dad is continually doing better every day, and his numbers are getting better as well, he is doing laps every day around the unit, and they are soon talking about putting him on the Freedom Driver. (The backpack)

Just in case you don't know how the Freedom Driver works, I'll tell you. The Freedom driver is a 25-30 pound backpack, that is connected just like the machine he is currently on. The Freedom Driver is also run on batteries just like the machine, but has a much longer battery life. Since the Freedom Driver runs on batteries, its not like you can just "Run out" of batteries, they have a secondary battery, a backup battery, and a backup-backup battery, then guess what? They also have a backup-backup-backup battery for the *first* Freedom Driver. Yes, we do have to carry around a second Freedom Driver that will serve as a backup for the first Freedom Driver. Then that Freedom Driver has a secondary battery, a backup-battery, a backup-backup battery, and a backup-backup-backup battery. Lots of backups. But that insures that if anything goes wrong, there are lots of backups that can fill in if ANYTHING goes wrong. Also, here is the worst case scenario:

Electricity goes out, we forget to charge the batteries, and the first freedom driver fails, and the second also fails. There is a crank where you can manually pump the freedom driver, and that does not fail, it is old fashion -no electricity involved.

So I hope that eases your minds a bit, even the worst thing that can happen with this piece of scrap metal, you can still keep it running. The beat, will go on.

Rejection:
You've probably seen my mom and dad use the term "Rejection" or the body rejecting the heart. This is where, the body sees the new heart as a intruder, and tries to kill it, like it would try to fight off a cold or the flu. The good news is, there are medications to control this, and pretty much always work if you keep taking the rejection pills.

Perry?
You have probably heard that Perry did not do well in his surgery with the heart transplant. I know what I was thinking when I heard that "Does that mean since Dad did well in the TAH surgery just like Perry did, does that mean Dad will do just as badly in the heart transplant as Perry?"

No.
It does not mean that Dad will do just as badly as Perry, and even if he does, Perry was pretty much a worst case scenario for the surgeon and still is getting better every day. Heres the thing: Dad has close to the same heart problem Perry had, but they both have different types within that. Almost every type of HCM is unique, and that sometimes makes it hard for the doctors to adapt to each individual HCM patient. Just because Dad and Perry are almost in the same situation, that does NOT mean that they will react to the surgery the same.

I hope that this post answered most of your questions, thanks for reading!

Back To School Paper/Update/My Thanks/ Funny Things

Back To School Paper

What I did this summer.

Teacher: "Alright Jaime, great paper! Cant wait to see the edited version! Now, lets see here, who's next... Richard! Come up here and read us your paper.

"Yes sir."

"What I did this summer. My summer started out normal, just as it should be. Everything was great, and my dad going into the hospital every 6 weeks to stay for 2 weeks was normal, no issues. My dads heart problem: Hypotrofic-cardeo-myopithy  (I totaly spelled that wrong, dont judge me.) was getting worse, so they had to turn him into a cyborg. My dogs problem, also getting worse. Her brain and how she thinks is CRAZY, and anything metal she licks. So we are going to have to take her to the vet. Then all of my family living all around the US is traveling to help us. With our crazy dog."

"What in the world?! Richard, go to the principles office! This is insane! Right a REAL paper next time!"

"Bu-bu-but sir, this IS a RE-"

"I dont want to hear anything of it! What is Hypotrofic-whatcha-makallet anyway?! SCRAM!"

Update

Dad yesterday was not doing good, probably one of the worst days. That was mainly because he had a "Brown Day" (He used the toilet a lot, or when he couldn't make it there, the chair.". However, in the next few days he should feel much better because of that, and be able to eat. His Cath is compeletly out, and he is walking on his own, as of yesterday (one of his worst days, let me remind you) he did 3 laps around the unit.

My Thanks

I would like to give my thanks to the following people, for spending the night/offered to spend the night and have /are going to come to help us out.

Jenn/Sean

Ellen/Mark

Dominique/ Michelle

Aunt Vicky

Gramsy/Pops

Nana/Papaw

Also thanks to all of the people that have donated, and given snacks, I would try to list all of your names, but there are too many of you :O (You scare me with your size and numbers)

Funny things I've heard in the past week or so:

Pokemon, turns cute little creatures

Into slaughtering death machines.

From Sean

Ipod returnal:

"Hi, would like to return this "Ipod" 5th Generation."

"What problems occurred with the Ipod 5?"

"Well, Uh, when I applied the new apple update, it sorta..."

"What?"

"It disenagrated"

"WHAT?!"

"Its now a pile of metal dust."

"WHAT?!?!"

"I would like to return the pile of dust please, I kept the headphones and charger."

"Wait wait wait, you want to return, that pile of metal dust-"

"Correction, your pile of dust. Expect it on monday."

"Wait, WA-*Call Ended*

From Brennan

Also, a very, very, very very funny video (warning, violence may occur. )

https://www.youtube.com/watch?v=qvPugcb7QGE

Thanks for reading!

The biggest disappointment, and the best day.

As you know in the last posts, I have been telling you and everyone else that the wait to recover to get BACK onto the transplant list is 2-8 weeks. I was wrong.

Yesterday we were told, "No, not 2-8 weeks. 3-6 *months*, we don't even start talking about putting people back on the transplant list until after 2 months." That, was what we were told yesterday. Now, this is what is going through our minds, "He wont get a heart for another 3 months at the least, it'll probably be after Christmas before we get the first one come in to dad."

This morning, we are welcomed by a phone call. Mom answers and I go back to sleep. About 10-20 minutes later mom comes in and says "Dad has news for you guys" Dad said the surgeon that put his TAH in came in earlier, he said "We put one person on the transplant list today." Both of mine and Brennans heart stop, "David, we put you back on the transplant list today, you can now get a heart at any time."

Of course, recovering from the surgery in 5 days is CRAZY, this is faster than Perry, he recovered in 2 weeks. Now today is a great day, go have a beer or if your under-aged grab a soda and have a great time today. I myself, am going to grab a beer. (Heh heh heh...)

Thanks for reading,

Rich

The Stress, its there...

The stress is here for all of us in stressful times, it comes and gobbles you up. Stress is getting to my whole family, and you cant stop it.

Dad is doing very good, and is still doing better and recovering faster than everyone (With the exception of Perry). Yesterday night I asked if they think dad will recover just as fast as Perry (Recovered in 2 weeks, went home in 2 months) The person looked at my dad, and nodded her head. "Yeah, keep up the good work and he should recover that fast." So that is a relief to my family, knowing he might have a heart in 2 weeks, and be home in 4. That is our hope, thanks for reading.

The Break, and the light at the end of the tunnel.

Today, I'm about to go see my Dad, MY Dad that has recovered faster than most people. My Dad and Perry are the only ones that have recovered this fast from the TAH surgery, so all of us are crossing our fingers that he will recover just as fast as Perry (2 weeks untill he could be accepted to get a transplant, and another month and a half before he was let loose.). Most of the nurses and Doctors have been in and out, astonished at how fast everything is passing by. Most of the time, the people that get this surgery don't wake up until the day after.(And even then, most of the time they are not themselfs) Most people don't get their breathing tube out until the 3rd day. Most people cant talk for atleast 4 days. My dad did all of those things in the first day, and was awake an hour and a half after the surgery(and was himself, I could tell by the tongue sticking out and the heavy metal sign. Also, he made the number 42 with his hands.) , and had his tube out 6 hours after the surgery, and was breathing on his own.

Yesterday, and today, I am very proud of my Dad, and I'm even more proud to call him my Dad. This fun loving guy, was given the wrong set of cards when he was born, but instead of getting depressed, or not doing what he needed to do, he traveled with us to get to where he needed to be. He fixed his own food so he could eat healthy, he kept up with his weight, and his blood pressure every day, and sometimes, he knows more about his own problem then some of the doctors know. He has done EVERYTHING he could possibly do to give him a better shot at this, and it finally payed off. I am proud of my dad because he has done all of these things, and is pushing through faster than most people.

Last night was a happy night for my whole family, my Mom's side of the family was gathered in a house yesterday, waiting for the call to hear that he was OK and was out of the surgery. My Dad's side also was gathered, and waiting for that call. Both sides were constantly giving money to help with the medical bills and every day expenses we struggle to pay off, both sides were constantly texting and giving love and assurance. And, it was not just our family's that have done all of this. His friends, our friends, have given more and more money, and offering to travel to come stay at the house and take care of the dog and us, everyone, EVERYONE we know has given such love that the four of us are dazed at how many people have offered to give.

Last night was a good night, but it is not over yet. Everyone is happy with how last night turned out, but we still have a long road ahead of us. We have the recovery to get through, and we have a crazy road ahead of us. That is all the time I have right now, I plan to keep on posting.
Thanks for reading and all of the support!

Rich

"We have done the impossible, and that makes us mighty."

I'm going to take this one post and brag about myself and my family, which I don't normally do, but I think today can be an exception. Today my dad is making the journey to the hospital, where he might remain for 5 months after his surgery.

Just in case you missed what is going on with my family, I'll give you a recap.
Dad's organs how now reached the limit of what they can do to keep up with his "Bum Ticker", and now he has to save those organs that have kept on going after not getting enough blood, he has to get a heart that can keep enough blood flowing through the body to keep his other organs running, and to do that, he has to get a TAH (Total Artificial Heart). This means, he is going to have to go through a tricky surgery, and stay in the hospital after the surgery for 2-5 months.

Here are the pros and cons of the surgery:

Cons:
The surgery is more tricky than just a plain old heart surgery, so the risk factor is higher.
Not be eligible for real heart after the surgery for 2-8 weeks.
If he comes home with the TAH, have someone 24/7 with him at all times that is trained with it if anything goes wrong. (That includes the nights that Mom works, when we go out to eat, ANYTHING)

Pros:
He goes up to almost the top of the heart transplant list.
He will feel much better when he comes home (if he comes home)
Most people get a heart before they come home on the TAH, which means he could have the surgery, recover in 2 weeks, get a heart, then be home in a total of a month. (That is the best case scenario)

We have gotten this info in bits an pieces over the past few weeks, and it has been a crazy two weeks.

Now, I'm gonna take this time to brag about my family.

We have endured the last 5 years, the first 2 years we traveled and moved constantly, never staying in the same place or house for more than 3 months, traveling with hardly anything. I remember bringing a computer, a few other electronics, and me and my brother each had a 5 foot by 3 foot box to fit the toys and other little things I wanted to bring, and to play with for the next 3 months. Then we moved finally near Boston, where one of the best doctors for hearts that is in the USA. We lived there for 8 months, then was turned down by the hospital, saying there was too many people on the transplant list, it would take us years to get high enough on the list to get a heart, and dad simply would not live long enough to get a heart there. We then moved to Lebanon PA, where we still live today for around 2 years. When we first moved here, we were told that dad would have to stay in the hospital for a week, every 6 weeks, then about 4 hospital stays later, it changed to 2 weeks every 6 weeks. And 2 weeks ago, we were told that my dad would have to have a transplant to keep his body going long enough to get a transplant.

But you know what?  We beat it, we traveled for 2 years to get our dad where he needed to be to live, we then moved again a year later to get him, again, where he needed to be. And now, we will beat this. Even if it takes 5 months for him to get out, even if it takes even longer after that to get a heart, we will wait and fight, because our dad is worth fighting for.

When I see my friends, and their parents get in the pool with them, or goes outside to sword fight with them, or goes out to rock climb, me and my brother have never had that, we watch those people and think, "How lucky are they" For the first time in 2 years, our dad about a month ago went out and went to a water park, and got in the water, which I cant remember him doing in a very long time. Our Dad does more than what most people could if they were disabled, he plans our school year and cooks, he goes out to eat and plays games, but I cant wait to have a dad that I can go and DO something with.

So, do you want to know what I say when people say "Eh, well the odds are that blah blah blah"
When people say that, I think about my dad. 1 in 100 people have a heart problem. 1 in 100,000 of those people have to get a heart transplant. And 1 in 1,000,000 people have to get a TAH. If you have ever met me in real life, you will hear me talk about the "Johnson Luck". This, right here, is what I am talking about.

Alright, sorry if I made you cry or depressed, go and watch something funny and happy, but just remember, most families can go out and go to a amusement park, or go to the pool, dont take it for granted, do it and have a good time, because some of us don't have that luxury.