WE HAVE OUR MARCHING ORDERS FROM STEVE!!

This is one of Steve's last post on his blog!!!

YES I COPIED IT WORD FOR WORD!!!!

I find it chilling that this is what he was working on...

And I for one am going to see that this goal gets accomplished!!!

Will YOU HELP!!






A Cure for Heart Defects!
November 26, 2010 by Steve

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961



On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year. Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science. And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

So lets put our heads together again. It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

RIP Steve

Last year I introduced you all to a friend of mine named Steve who was an activist for many of people with CHD Congenital Heart Defects. Steve passed this morning so I am posting a note here.

Today I am Grateful that I had the opportunity to meet Steve and to call him a friend!!

Rest In Peace Steve.

His Blog was called the Adventures Of A Funky Heart

Please stop testing me to see if I have changed!!

Dear G-d,


Hey its me.....I just have a little favor to ask of you...I know that you like to occasionally throw one or to test my way each day to make sure I can keep my anger and mood in check but...I really think you have done enough testing for one day and it is not even noon.

OK so I was up till 4AM....my fault I guess...this new heart does not like it if I nap for more then a half hour. However, first the coffee that I set up ends up with the grinds all in it...as I was going to run it again in a new filter the other one broke before I could get it to the trash...so I decided to just load the dishwasher and clean things up...what happens...I smash my little finger in the door way while moving the dishwasher...people need things but...instead of asking me to find it so I can move things along...they ask the boy (not his fault but he gets stuff so mixed up) that I end up getting interrupted from what I was doing to handle the situation. I would like if I can at least get 30 minutes of meditation in without being disturbed.

As I say...I keep on trying....but sometimes I think you get to much of a chuckle watching me with my daily struggles.

And finally G-d if The Steelers could play one game without giving me a heart attack that would be great.

Thanks and have a great day!!!

Baby Steps

I always say that I am in a catch 22 situation when it comes to my moods...

If I don't talk....there is something wrong

If I joke and tease...there is something wrong

If I am to happy....there is something wrong

you get my point.

Well I was off last night....call it what you want...but I was off!!

I was stressed and I have not been stressed in a couple of weeks...it took me by surprise.....and I began to think what was the trigger...

And I finally just came to the conclusion....that there are a lot of folks out there who are more then willing to tell you how to fix yourself...but can not for the life of them fix them....

I guess that I need to learn to be more tolerant of these people but on the other hand...there are many different things that they can do to make themselves better...but they would rather use every excuse in the world to justify why they can not change....and I guess I find that a little more then annoying. Sorry, I realize that there are some people who have disabilities that they can not change...I am not talking about those folks....but rather there are some educated people out there...who like to tell everyone else how to live their life or do their job or raise their children or clean their house or deal with a spouse. But when you try to offer advise they are usually the first ones to get pissed.

Look we all have issues in life that we need to work on.

But if you flat out refuse to work on your issues or ignore them....then I guess I should just hold my tongue.

Just keep this in mind.....I am working hard on my shit and some times I may get in a pissed off mood when I see and think about people who are like a hamster on a metal wheel running...running....wasting energy....running...but not reaching any goals.

Yes, I have to remind myself that I need to work on me and not let others around me interfere with what I need to do to make myself better...It not going to be done in a day...it is a process.....it is going to take baby steps.

Tradition!

OK so everyone has them...but my question is how do you start a new one without PISSING people off...

When is it OK to make a change?

And as life changes is it OK to make new traditions...is it OK to say that some Traditions are just not working for you anymore?

Does it mean you care less about those you love if you want to change the way things have always been?

Don't your needs change as you grow older?

Just some questions that I have been pondering.

Let me know what you think.

Did you think that I would not have a blog post for Thanksgiving Day

Some will use the day to over-eat
Some will use the day to get some extra sleep
Some will use the day to watch Football
Some will use the day to plan Black Friday at the MALL...

But the day is called Thanksgiving...a day to pause and give thanks for all the gifts in our lives.....so again here is what I am thankful for this year....

1. That I have reached this time of the year again.
2. That I still sit at ZERO rejection.
3. That I have great family and friends. My family of origin and those that who are
family by choice.
4. That I have made new friends...and they are a big part of my life.
5. That I have now begun to pay forward to other since I was given the wonderful gift
of life.
6. I am grateful that I have made positive changes in my life.
7. I am Thankful for my donor and I pray that his family realizes what a wonderful
gift that their love one gave to not only to me but to several others.

Finally, I am Thankful that I have this Blog and that I have readers...I know you are out there even if you don't leave comments.

Lets change that now....you tell e what you are Thankful for this Thanksgiving!!

Sunday the end of the weekend leading us in to a short week!!!!!!!

Monday the only good thing about this one is that it starts a very short week for most people.

Today I attended my first TRIO meeting a lot of folks I knew where there so I did not feel like a stranger....out there and alone.

The talk today was on Kidney and Pancreas Transplantation.

I learned that since I am doing so well after my transplant for my heart, and the fact that the anti-rejection medication for a pancreas transplant is Prograf...which I am already on, combined with the fact that my Kidneys are working well....makes me a an excellent candidate to be evaluated for a Pancreas Transplant.

The wait if approved would be rather short as I do not need a kidney or liver transplant which are usually done with the pancreas. At the most I would be looking at a 6 mos wait...a brief few days in the hospital and that is it.......

What does it all mean....if I go and get evaluated...and if I get listed...and if I get a pancreas....I could be free of my insulin pump and as a matter of fact insulin altogether....I see this as a good thing because as we all know there are some nasty things that can happen to your body if you have diabetes which is not under control....I try really hard to keep mine that way but even the best plans go out the windows.

I think that I have made some positive changes with my eating habits since the heart came in March of 09...I am exercising more(note tomorrow Rich and I return to the Y), I am meditating and writing my blog and for more private thoughts in my journal. I think I see this as a possible step in extending my life.

Like I said it is all in the infancy stage and I have made no decisions yet...I will however be gathering more information before my appointment with the Endo-guys at UPMC on December 15th,

What I need to remember is that I am not the one guiding this ship....and I leave everything in G-d's hands...I believe that he will guide me in the right direction.

Stay tuned....I know whatever I decide to do it will all be posted here...and I will not change the name...because ALONG THE PANCREAS TRAIL does not seem to be have the peppy step in the title...

The pancreas may do a lot of things but hey, let's face it if you don't have a heart you have no use for anything else.

Today I am grateful that I went to that meeting.

Thank G-d I live in PA and not AZ

Someone posted this over on one of the groups I belong to on Facebook.

A man in Arizona is being denied a life saving transplant....not because there is no donor but rather the Governor of that Arizona has decided that the states medicaid program should not pay for Transplants.

WTF..WTF..WTF AND IN CASE YOU DID NOT GET MY SHOCK OF THIS ONCE AGAIN WTF!!

For the last year we have been slammed by certain Political Parties..."The passage of health care reform will lead to Death Review Panels....etc, etc, etc."

I would just like to point out for the record that this GOVERNOR is a Member of the GOP!!!

I usually don't like to post about religion or politics on this blog but when this was sent to me I knew that I would break this rule.

It is just wrong that we are denying someone the gift of life because they can not pay for it themselves....what the HELL has happened to this country???? I bet this Governor is PRO-LIFE and ANTI DEATH PENALTY...But it is O.K. to let this man die because he does not have private health insurance?

Everyone deserves the right to life...regardless of the cost!!! O.K. so what happens next in ARIZONA....are they going to deny treatment to everyone who is on their state medicaid.....Here is a question MR. DIPSHIT GOVERNOR..."WHY DOES YOUR STATE OFFER MEDICAID TO THOSE WHO HAVE NOT INSURANCE IF YOU ARE NOT GOING TO LET THEM GET THE LIFE SAVING TREATMENT THAT THEY NEED?"

You know what makes me angry....besides stupid people....We as Americans are sending our young people and our money all over the world to help those who can not help themselves and to defend them so they are not kept down by dictators and hostile governments yet we TURN OUR BACKS ON OUR OWN CITIZENS...WE GO AND GIVE MEDICAL AIDE TO THOSE IN FOREIGN COUNTRIES...BUT IGNORE THE SICK HERE...WE FIGHT FOR EQUAL RIGHTS FOR THOSE WHO HAVE NO RIGHTS...BUT YET WE DO NOTHING ABOUT INJUSTICES LIKE THIS!!

Every American should be outraged and get on their knees tonight and Pray..pray...NO BEG G-d to keep you healthy...especially if you live in Arizona....but just remember we never know when this will happen in our own individual states.

Today and tonight I am grateful that I got my life saving organ...please pray that Said DIPSHIT GOVERNOR changes his PEA SIZE MIND!!

I Promise that tomorrows post will be a lighter one.

what am I grateful for today...

That the biopsy that I had yesterday came back again showing ZERO rejection.
That makes 20 months with no sign of rejection.

That is good

That is great

That is Awesome..... no wait...

IT IS FREAKIN AWESOME....and that is why I am Grateful!!!

May tomorrow be a perfect day...

Oops, I just looked at the clock...seems like tomorrow is already here....so hopefully today will be a perfect day.

I will be getting up at 5AM which at this point is 4 and a half hours away to shower. I will get on the road by 5:30 and head off to pick up my oldest son(Rich is a young man that I worked with who has become a member of the family...he wanted one and we had the room.) He and I will then travel in to Pittsburgh where I have an appointment at 7:40 at the transplant clinic for my next biopsy...after that we will go to the cafeteria to get something to eat and visit with my friends from TEAM PITTSBURGH, who will be selling various things to help raise money for the next games....at 12PM I have an appointment with the lung doctor...He needs to see me since I have been on the C-pap machine and medicare says he has to see me within 90 days of using the machine. From there we will go see the wonderful Dr. Ellen, who will help me put the thoughts and actions of the last week into perspective. After we will go to Kosher Mart to get Sharon somethings and then to Pinsker's as Rich would like to get something Jewish for Sharon for the holidays. Later Rich is going to come set up the flat screen high definition tv that we bought off of him....he went and got a bigger one so he had to get rid of the old 32 inch one.

Rich was is in the service as a reserve...he was deployed to Iraq in January of 09...he knew nothing about the transplant till May after it was all over...to say the least he was a little upset with us for not telling him...he had enough on his mind at the time so we did not tell him!!

I know that everything with the Biopsy is going to be fine I have had 19 months with no sign of rejection..so unless there has been a major change(which there has not been since I am still on the same meds and the levels were fine a month ago when I got blood work done) I see this as nothing but routine. The C-pap machine is doing what it needs to be doing...so I see the second appointment again as routine....and Dr Ellen and I have been making a lot of progress over the last year so I look forward to our sessions.

So what am I grateful for today....

The Doctors, nurses, lab techs and the Transplant Coordinators at the Heart Center who have taken great care of me since I met them all in January of 2009.

The Doctor, nurses and lab techs at the Lung Center who have taken care of me since early 2008.

Dr. Ellen who I met on March 3, 2009 and only had one other session with me before the Transplant to at least begin to help me make sense of things..but who has since the Transplant forced me to take a good hard look at myself and the things that I needed to deal with in order to be not only happy but healthy. I love the fact that she holds nothing back and that our style of counseling kinda are similar..ie..we both call them like we see them...and she is not afraid to call me on my own Bullshit when I need to be called on it.

Finally, I am grateful to have Rich and his son Tyler(who by the way calls me PAP...I am way to young to be called PAP) in our lives...family is what you make it..I have my family of origin...I have my extended family...and then I have the family that I created by allowing those who need one to become part of mine. I am grateful that Rich is back home safely from the war....he may still be deployed again...I am grateful that he is always willing to help his "DAD" out whenever I need him. He has been a blessing in my life as well as Sharon's and Evan's.

I Laghed my A$$ off Tonight!!!!!

As I stated in my last I bowl....tonight was the league of mixed folks...young and old..Jews and Non-Jews...it started out as a league for the a couple of temples in the area and now is down to this mixture.

I fit somewhere in the middle of the age range....not to shabby!! I occasionally go out to dinner with what I like to call the under 30 group...well to be more accurate it is more under 29 group. There is A&W, Jdubau, Cupcake, and just added to the group tonight THE ZUES. Tonight we met for dinner at KING'S and then headed off to the lanes. As luck would have it Cupcake and Jdubau were bowling my team and A&W and The Zues were on the next lanes. Some how the jokes started flying and the quick witted responses began to happen during the second game.

By the end of the 3rd game we were all laughing and joking with each other. It made me realize that I had not really laughed like that in a couple of months. It felt good and I enjoyed it...even the part when The Zues called me Old As Dirt!!! Jdubau chimed in with your OAD...

Well this OAD guy is very grateful to have these young friends in his life...because when I am with them...I feel younger and for the most part I feel young to start.

I am so glad that I joined this league and met these fine outstanding...although slightly off their perspective rockers...young people.

So to the 4 of you I say Thanks and I love you guys.

Fun day at the lanes.

It really does not matter how well I bowl....because lets face it if I was good I be out on tour. But instead I am an ok bowler...today I bowled a 105 and 101 with a 170 tossed in the middle so that I am able to keep my average.

Today I bowled with TEAM PITTSBURGH we are transplant recipients, who participate in the Transplant games. Then things that it does not matter who is bowling who...there are no prizes in the league...but we do cheer for each other. Let me just say we cheer loud and proud!!! Usually the lanes are empty as the afternoon crowd is going home and the evening leagues have not started yet. Not only do we cheer for each other during the games, but we celebrate every milestone.....Birthday....Transplant Anniversaries, Good Medication Checks....we are just living life and grateful that we are here to do it.

I encourage you to check out the web site. The next games will be in 2012, hopefully they will be here in Pittsburgh, but regardless of where they are we will need to raise some money..so if you would like to make a donation that would be great. Just put Along the Heart Trail in your memo line of your check.

Remember you can make a difference by being an ORGAN DONOR so sign up today!!!

I have changed my mind.....yet again!!

Ten days ago I was going to shut down the old Heart Trail site. It felt to me that the site had done all that it was supposed to do and more.....but I have decided that it had not. It was great keeping a record, which I will always have of the journey leading up to and the first 19 months after the transplant...and I do realize that occasionally there will be people who will receive a suggestion to come and look at this BLOG especially if they or someone they love is looking to be evaluated for any type of transplant.

So with that said...I am going to keep blogging about this experience, because as I have discovered in the last 10 days the journey is never over...and like my heart it just keeps going on one beat at a time.

I hope that you will continue to read it and support me.

THANKS