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My Heart Cries: CHD Awareness Week
- Feb 7, 2009 at 9:18 AM
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- Comments (117) Total Views (3016) Everyone can see this journal post.
If you've visited my page this week, you'll know it's done to bring awareness to Congenital Heart Defects (CHD). Though the theme of my page will remain the same throughout the month of February, the graphics and background will change weekly in the hopes that CHD Awareness will be on the minds of many. It's meant to inspire, encourage and educate those whose lives have been altered or will be altered by CHD. I've written several journals over the past year and a half on CHD, the number one killer of babies in the United States, and I encourage you to read or review all of them for better understanding of what CHD is and the impact it has on the lives it touches.
Those who know me know that I greet each day with a smile and try my best to be a friend to all. What you don't know is that inside, my heart cries daily. It screams at the injustice of this disease and the injustice done by those who lead this great country. It weeps everyday because children die, the public is ignorant about CHD and doesn't bother to get the facts and law-makers sit around passing legislation that further de-values and kills not only lives of the innocent, but also their hopes and dreams while at the same time, crippling the parents of these children who are only trying to give their child one more day of life..
Because CHD led to my son receiving two heart transplants, it's hard for me to separate CHD Awareness from Organ Donation Awareness. You see, I've been down both roads and they are roads that are filled with hills, mountains, potholes, detours, curves, valleys, etc, etc.. It's not a path I would have chosen but it's definitely one that's made me realize the most minute blessings in life.. It's one that's given me my voice, though more often than not, I feel my voice is not being heard.
In October of 2007, we got the devastating news that Social Security no longer deemed my son disabled.. According to them, he could work. His life is normal. His health is perfect.. NOT SO, screams this heart! NOT SO!! Hear my voice! Hear my son's cries! Walk in his shoes and tell me he is healthy! Listen as the doctor tells you that your body is rejecting the donor heart and tell me it's just another normal occurrence! Pop the number of pills he pops daily in order to sustain life and tell me he is healthy! Have pieces of your heart taken every three months and assure me that is normal! Go through a heart catheterization every year and tell me it's just a fact of leading a normal life! Have your blood drawn every two months and tell me that's normal! Watch as the drugs attack your kidneys and your kidney function decreases to the point that dialysis or kidney transplant is discussed and tell me that's normal! Try working when even the smallest amount of "labor" causes your blood pressure to soar to dangerous heights and tell me that's normal! Listen to your doctor as he tells you that your life expectancy is 3-6 years and tell me that's a normal life expectancy! I think NOT! It's NOT normal! He is NOT healthy!
For over a year we've nervously and fearfully awaited an appeal to Social Security's decision.. Two weeks ago, we received a letter telling us that Social Security had been backlogged and was just now coming to his case.. They need proof that he's rejecting his heart.. Proof that his blood pressure is unstable.. Proof of his learning disability.. Proof of his immuno-suppressed system! Proof! Proof! Proof! I gave them this over a year ago.. Nothing has changed except the fact that a year ago he had a year longer to live.. A year ago there was no scientific proof that CHD causes learning disabilities.. The proof is there now! Do the research! Take some of the pressure off of parents of raising a child with CHD by becoming informed! Dont' just sit there and make your laws without having done the research! With each denial of Social Security, you're denying health benefits! You're signing death certificates! Sorry, but that's the plain hard truth! I live with it daily! I think about it daily! I cry about it daily! I live in fear daily that I won't be able to afford medical treatment that will sustain my son's life! For my son's sake and others like him, HEAR MY CRIES!!
The Georgia Department of Labor wrote a letter to Social Security telling them that they could find no place to employ my son.. But, yet, Social Security says he's employable.. Come on! What company would want to employ someone who poses a huge liability risk to them? What company will hire someone who could die from being exposed to the common cold? What company will hire someone whose blood pressure soars to dangerous heights when he walks? What company will employ someone who will have frequent absences? What company will employ someone who will be like a leech to their health insurance plan and suck it dry, driving insurance costs to even greater heights? Think!
He can't even get life insurance! Instead, we had to buy a "Final Expense Plan".. He is uninsurable both in health and life! Okay.. I get it.. This is normal.. Everyone is like this.. NO, they're not but with CHD affecting 1 out of 100 births, this may one day be the norm!
Someone schooled in state health insurance told us not to worry.. If Social Security denies him, just let him get his own place and, due to his income, he could get state funded health insurance.. Well, guess what?! Georgia is one of the few states that does not pay for heart transplants!!! We'll pay for kidney, liver, lung, or any other transplant but we'll not pay for hearts! Are you kidding me??? Ummm, no! They're not kidding! Right now the doctor suspects my son may have coronary artery disease.. He's traveled that road before! April 2006 diagnosis.. CAD (coronary artery disease).. Treatment: Heart Transplant.. The way things are now Social Security's response would be.."Guess you'll bury your son soon".. Come on! Give me equality! Give my son a chance to live!
Let's also look at the cost of sustaining his life.. Drugs: $4,000 a month! Biopsies: $15,000 quarterly! Heart Catheterizations: $50-75,000 annually! That's not including well check ups, unexpected doctor visits, labs.. And let's not forget, heaven forbid, if his kidney function doesn't improve.. Oh well, he's a healthy, normal young adult who can go to work, get health insurace and pay for these things himself! GIVE ME A BREAK!! Do the math! If he were insurable and had health insurance, he would be expected to pay no less than $36,600 a year for drugs and treatment to sustain his life! I believe the majority of Americans don't even make that amount of money a year! "Sorry, if you can't pay that then you'll have to do without something" seems to be what Social Security is saying..
Let's not take the drugs for a few days.. The result: death! Let's give up the biopsies.. The result: oops! you didn't show up for your scheduled biopsies so now you have severe rejection which will probably lead to your death.. Bad idea.. Ok.. How about this.. Let's give up the annual heart cath.. Well, son, since you haven't had a heart cath in 2 years, you've developed CAD. Had we caught it sooner, we may have been able to help.. By the way, have you made a will? Looks like you'll be needing one soon..
My heart cries! It screams! No one hears! I would love to see CHD become a rarity.. Instead, it's becoming more prevalent! My heart breaks for those affected with CHD, for those whose lives are crippled by CHD, for those who lose the battle with CHD.. Along with my cries, I'm filled with anger at a system that refuses to recognize the devastating impact CHD has on babies, children, families.. I'm filled with anger at a system that will not acknowledge the truth that CHD and Organ Donation are in fact disabilities which often lead to death! I'm enraged at a system that will support those who become disabled through drug use, careless sexual promiscuity, or any other disease brought on by their actions but yet denies support to those who did nothing but be born with CHD.. Those who, even before their first breath, began the battle with CHD..
I scream at the injustice.. I demand that changes be made.. I fight the system.. Alas, I am but one voice.. I am but one person.. I am but a mother of a CHD Survivor.. I am but a mother of a HERO.. I fight for my son and for your children, your grandchildren, your nieces, your nephews, your cousins, your friends, your acquaintances.. I fight! I scream! I cry! I weep! I get up each day and start all over again!
Join me as "My heart cries" and maybe, just maybe, we'll make an impact....Maybe, just maybe, our cries will echo and be carried to those who can make a difference! Maybe, just maybe, we can change public opinion.. Maybe, just maybe, we can educate others to the fact that invasive medical procedures and life sustaining drugs are not the NORM! That those who rely on these things are DISABLED! That Georgia needs to change its laws that denies payment for heart transplants.. Please, hear my voice and add your's to it.. Though my son can speak for himself, other's can't.. Give them a voice! Use your voice so that it can be heard as..
My Heart Cries..
Comments:
You are an inspiration to all mothers! Your passion and love for your son are inspirational! Keep up the fight to make sure everyone knows about your journey! If only every mom could have your dedication as you do with CHD ...the world would be a better place. My prayers and all the strength from my own heart goes out to you and your family.
I am in shock right now.I have never heard about this.I know how messed up this world is,but wow I am shocked.I have you and your family in my thoughts and prayers and for the others that are effected by this as well.
I just finished reading this and of course I am sitting here with tears in my eyes.
Thank you for sharing your heart and your story.
About six months ago I asked you to pray for my baby cousin who was born with Hypoplastic Left Heart. He had his heart cath done yesterday and is going in for his Glenn (the second surgery) on Monday. He is the sweetest, happiest baby and just so full of life...all you have to do is look at him and he smiles all over. He may have a little heart but he sure has big love.
I can honestly say that I had no idea that CHD was so prevalent until it hit someone I love. I would be happy to help spread awareness. I'll be praying for you and all of the families affected by CHD.
Cheri, I wish I knew what I could do to help. You know that I pray for you and your family and Clayton. God is there and He is listening. I want to do more.. As an infant I had PDA, NOTHING like this. One major surgery and it was done and over with. Corrected. I only wish this for of disease was the same. One corrective surgery and it is over. Help me help you. What can I do?
Love and Prayers,
Margo
You are such an inspiration !! I agree with you about people getting SS for reasons like being drug addicts and alcoholics because I saw it when I had to fight for my own rights for years to get it because I am disabled and the laws are UNFAIR !! They are not right at all !! I think what it is , is they don't want to be responsible for your sons medical bills . Every year they are cutting some drug that is necessary to me anyway off of the SS plan and I have to pay out of pocket for them. They do help with some. And for that I am grateful. It is the necessary stuff that they want to fight you tooth and nail on ! Doctor approvals , pharmacy approvals., no you are fit , NO I am NOT , READ please !! I really think they just want to find a way to not have to pick up the tab on this disease !! I am soooo sorry for this for you and your son and family !! What a toll it takes on all of you !! You are all so very strong to do what you have done and make it so very far !! SS doesn't care and neither does any of the system or the government about us or our familys or feelings. They would rather be done with it all and not have to be bothered. Keep on fighting !! That is all you can do !! And get as many people to help as posssible. And write to the PRESIDENT !!! HE is all for healthcare from what I see in his speaches. And congress. And keep on writing. And have everyone you know write too !! May God be with you and your family and Bless ya'll. Hugs.
AWWW PEACHY. I KNEW YOU HAD TOLD ME SOME... AND I SAY SOME. I KNEW YOUR SON HAD ALREADY HAD 2 HEART TRANSPLANTS.. BUT I THOUGHT IT HAD MADE HIM BETTER. OH YOU POOR SWEET WOMAN. TO LIVE THAT FEAR DAILY. I AM SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO SORRRY. YOU CAN COUNT ON ME. I WILL ADD YOUR CHD GRAPHIC AND I WILL ALSO SEND THIS REQUEST TO EVERYONE. THAT THEY COME HERE AND READ. AND PEACHY IF YOU FIND ME A LINK TO ANY AND ALL PETITIONS FOR CHANGE ON THIS ISSUE.. I WILL FORWARD THEM. I KNOW IT IS NOT ALOT... BUT I WANT TO DO SOMETHING. ATLEAST IN THIS WAY I CAN SHARE YOUR BURDEN. I AM ALSO PRAYING FOR YOU.
MUCH LOVE.
Tonia
Just let me know what I can do....anything. If it were my son I would someone to stand with me and lend there voice. You, your son and family are in my prayers. I want to help just tell me what to do.
Julie
Thank you so much for this wonderful journal. You never know when CHD will hit home. In July I lost my beautiful neice to heart disease. She had it since childhood and unfortunately took her away from us.
You are a bright light in the world......thanks.
Peachy........... Clayton couldn't be luckier to have a mother like you! He is truly blessed!
Love & Hugs, Christina
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