(Arterioveneous Malformation) was caused by a condition called HHT (Hereditary Hemorrhagic Telangiectasia)

Blessings, Fear and Tragedy

My name is Jason. My wife Angie and I live with our beautiful family in Tennessee. If you have read the “Our Story” section of this blog you will see that we have five children. We are a family that is completely rooted in our faith in God. While we feel that we are extremely blessed we have also endured more pain in the past few years than should be humanly possible. Through it all we have held together. This blog will tell our story.

On Tuesday July 26th 2005 the greatest fear that my family could ever have came true. My wife Angie who was eight weeks pregnant had taken our two daughters Mary Owen (Nineteen Months Old) and Madison (Four Years Old) to a play at a friend’s home with their two daughters. Our children were all happily playing together when Mary Owen collapsed. She was not breathing or responsive to the screams of my wife. An ambulance was called and arrived on the scene within minutes. Noticing the critical nature of my daughter’s situation they rushed her to Vanderbilt Children's hospital in Nashville Tennessee.

I received a call at about 1:30 pm from the friend telling me what had happened to my baby girl. They told me that the ambulance was in route to the hospital and that I needed to get there as fast as I could. Upon my arrival at the hospital I found my wife standing beside our daughters still body. Doctors and emergency room staff were racing around in an attempt to resuscitate and save our little girl.

Initial tests suggested that there was bleeding within Mary Owens brain. Over the next several hours the doctors and staff attempted to relieve the pressure in our daughter’s brain that was caused by the bleeding. They were unable to save her. On Wednesday July 27, 2005 with family by our side we held Mary Owen in our arms while she went on to be with God.

This earth shattering event could have been prevented. The ruptured blood vessel or AVM (Arterioveneous Malformation) was caused by a condition called HHT (Hereditary Hemorrhagic Telangiectasia). This is a hereditary condition that also afflicts my wife, daughter Madison, son Maddox, mother in law and sister in law.

My wife was treated for this condition during her pregnancy with Mary Owen. She had an abnormal blood vessel in her lung that was treated and cured. We had our four year old daughter Madison screened for this condition in 2004. The screening found that she had a 16 centimeter abnormal blood vessel in her brain. This was a sizable AVM that would require surgery to reverse. Mary Owen had been screened back in December of 2004 and the findings were the same. Mary Owen had a 6 centimeter abnormal blood vessel in her brain. We were told by our doctor that the size of Mary Owen’s AVM was insignificant and that they only recommend treatment for abnormal blood vessels that were greater than 12 centimeters in size. We were relieved to hear this news. We thought at that time that we would only have to focus our efforts on treating our older daughter Madison.

For Madison’s treatment we were referred to the Hospital for Sick Children in Toronto Canada. We had been working with the hospital and our insurance company for the last several months in an attempt to get care for Madison. We were initially told by our doctors that there was no need to rush into Madison’s treatment. They said that we had plenty of time to set up her care. These are the same doctors that told us that Mary Owen would not need any care for her AVM. They were wrong, and now she’s no longer here with us. We knew that we needed to expedite Madison’s care while also being careful with her emotional well being as she had watched as her baby sister collapse. We were not sure how to explain to her that she would need care for a similar condition.

We knew with Mary Owen’s passing we had no time to spare in getting Madison to Toronto for her operation. We had people all over the world praying for our daughter. Angie and I were an absolute wreck. We told Madison that we were going to Toronto to take her on a trip to Niagara Falls. So that she would not be scared by going to the hospital I also told her that we were going to visit a doctor friend of mine while we were there and that he had some really cool band aids that he could put on her knee which she had recently skinned up in our driveway. I did not want to lie to her but I felt that I had no other choice.

When we arrived at the hospital we were greeted by our doctor. As I had already talked to him about the story I told Madison he immediately talked to her about the boo boo on her knee. They then gave her some medicine that would make her go to sleep in preparation for the surgery. A feeling of complete terror washed over us as they wheeled her away. Even the fact that she was in the care of the best doctor in the world for this type of procedure was of little comfort. We started praying and pacing. Then suddenly I realized that I had not brought the cool band aids that I had bought to put on her knee in the recovery room with me. I thought “How could you forget them”? I was thinking totally irrationally. I told Angie that I needed to run down to the gift shop to get some so that Madison would not know that I had not been truthful with her. Angie told me that I was acting crazy but I still left to hunt for them.

The band aids were very hard to find. Once I had them in hand I raced back to the elevator to go back up to the floor where Madison was having her surgery. Just as I got to the elevator Angie walked out. Her eyes were filled with tears. I was stopped in my tracks and stricken with fear. I heard her tell me “She’s Gone”. I panicked and felt like I was going to faint. Noticing that something was very wrong with me she grabbed me and asked me if I was ok. She looked me straight in the eyes and repeated what she initially said to me except this time I realized that she did not say “She’s Gone” she said “It’s Gone”. I asked her to explain what she was talking about. She said that the doctors had started the procedure but stopped when they noticed that Madison’s AVM was gone. We raced upstairs and the doctor and his assistant took us in a room to talk. He looked shocked. He told me that in all his years of practicing medicine he had never seen anything like this before. The AVM that was so great in size was completely gone. He said it actually looked like there was never one there even though all of the tests and imaging had conclusively confirmed that there was. I knew right then that we had received a miracle from God. God had healed our sweet Madison. There is great power in prayer and we have seen that power first hand.

Three years have passed since all of this has happened. Madison is doing great. We have since been blessed to add our sons Morgan and Maddox and soon to be adopted daughter Macy to our ever growing family. Even with all of these blessings around us we have still had a very difficult time dealing with the fact that she is not here but we know that we will all be with Mary Owen again. Until that day we will take care of one another making sure that we are humble, thankful and faithful for the amazing blessings that we have received. This is Our Place of Grace…

from...

Greg Sanetz....

This is a true story....

I have a step-father

When he came into my life I was a rebellious teen.

Like so many step-fathers and step-sons,

he and I never saw eye-to-eye

There were many times I think we would have liked to beat each other up

rather than listen to the others point of view on life.

I saw him as an uneducated oaf

that had nothing to offer me or my mom

and he saw me as a young man without direction.

But he did his best to tell me what he thought a man should be.

I never listened.

I wanted to be a rich man when I grew up.

He was a simple mechanic

with nothing to his name

but a pickup truck and some tools.

That was many years ago.

He had a heart attack about three months ago,

not a very big one,

but enough to put a scare into everyone who knew him.

He smiled and said he was fine

He had an stomach-ulcer that kept bleeding

and this lead to another heart attack.

When he went into the hospital

they ran all the tests they could on him

and he said with a smile

"I am fine."

They found stomach cancer

and it had spread into some lymph nodes and the fatty tissue around his stomach.

They ,to use his words,

"Gutted him like a fish."

The pain after the operation was tremendous,

but as soon as he could speak he said.

"I am fine."

As a result of his illness

he lost his job.

He just could not work in the Florida heat anymore.

He said it was "fine."

He is now receiving Chemo-therapy and radiation treatments.

You can tell he is in pain and does not feel well.

But if you ask him how he is he always says,

"I am fine."

He moved in with us,

He and Mom are divorced now.

"Because it was just easier to get to treatments." he said.

( Really not wanting to be alone

or wanting to admit he could not afford to live elsewhere.)

and we said, "We could make him eat."

( Really not wanting him to be alone and silently

knowing he could not afford to live elsewhere.)

He came and brought his

Pickup truck with his tool box in the back.

The two things he owned.

Two weeks ago,

while he was on the phone to his doctor

About his insurance being cancelled

(caused by a clerical error)

and trying to arrange to continue receiving his

radiation and chemo-therapy,

while he got things straight with the

insurance company,

my girlfriend came in the house and asked my step-father

"Where is your truck?"

"It should be out there in the driveway. "he said.

It was not.

Someone had come in the night and taken his pickup truck, with all his tools in back.

Someone had ridden off with the only two things this man owned outright.

He had a check book in his brief case that

was in the cab of the truck.

He only had a few hundred dollars in his checking account,

but whoever took the truck

managed to cash enough checks to overdraw the account.

He is now penniless.

But with a smile he will tell you

"It will be fine."

This morning he and I sat on the patio,

Me drinking my morning's coffee

and planning my day out,

he just watching the sun rise.

I could sense he was feeling "off".

When I asked him how he was,

He responded with a simple smile and a

"I am fine"

He was fibbing but that is okay.

Then pensively

he started to tell me about

tools.

How to tell a good one from a bad one.

Who makes the best,

who makes the worst,

who makes them too expensive,

who makes them cheap,

who gives the best service,

who gives the worst,

who makes the best tool box,

who made the tool box he lost when his truck was stolen

and why he picked that one.

He told me about all the tools he had,

and why he had those specifically.

What jobs they were bought for

and why.

With lots of "best tool for the job"

and " right tool for the right job " thrown in here and there.

A couple hours went by in this fashion.

And that is when it hit me.

That all this man had to his name

was a series of stories,

of life experiences,

of knowledge passed down from his father to him,

and he was leaving it to me !

It was his Legacy,

the most precious thing he had

and he wanted me to have it

when he was gone.

I hope we have many more mornings

like the one

he and I

shared today.

I can't help but wonder

how much more of this type of wealth he would have left me

if I had taken the time

to listen

when I was a young man who needed direction.

I am richer today because of the things he has told me.

How much richer would I be

if I had listened all along?

If he does leave this earth soon

I will miss him

more than I would have ever imagined.

And I will remember,

and be thankful for

his

Legacy.

please pass this on, I think he would like to leave his legacy to everyone if he could.

Gregory Sanetz passed away quietly after a long battle with Stomach Cancer
He will be forever remembered by his friends and family.
There has not been many days since he left on his long journey that I have not thought of him.
There have been many times that I wished he were here to guide me through a problem or just to tell a funny story.
Rest well my friend, and know you were loved.

I ain't doing much today...

nothing to report on AVM's ... this is good news!

Nothing to report on my love life... this is bad news!!!!

I did pick up a new advert program...


It is a nice one.
Go give them a look...






truly bizzar!

amazon...

No Avms To Report... just a little of my mind.

This is my brain... this is my brain on drugs.

(Actually I am only on Antidepressants.)
But we'll say Drugs... thay are... kida.

I have to say I feel better on them. You know I quit smoking... for about 6 months. I started again. Oh boy did that make heads turn. But you know what? It is my body... and I am happier... a lot happier!

You know what I want? I want to go out! I don't know where... just out!

I also want to know what made my friend in Florida go away?
I miss her.... a lot.

well lets see what I can dig out of youtube... shall we?


That's a Movie... Night of the Living Dead.

i LIKE THE MOVIE...


Iron Maiden... Holy Smoke!

It scores 4.5...


Midnight Oil... King of the Mountain...

amazon..

Continuing AVM Education

Continuing AVM Education
Below is an explanation of what Arteriovenous Malformations are by Dr. Ed Zimney. This blog can be found on Dr. Z's Medical Report at http://blog.healthtalk.com/zimney/

I appreciate very much Dr. Z's explanation of what AVM's are. He provides a very concise explanation. I have tried to post the weblink for the actual page in which he posted his explanation on AVMs (see http://blog.healthtalk.com/zimney/arteriovenous-malformations-tangle-of-blood-vessels/ however, the link would not work once I posted it with my favorite links. I have provided Dr. Z's main blog url though.
Kimberly

The Tangle of Arteriovenous Malformation as written by Dr. Ed Zimney 12/2006 at: http://blog.healthtalk.com/zimney/arteriovenous-malformations-tangle-of-blood-vessels/

"An AVM is an abnormal tangle of blood vessels that develops before birth. They can be located anywhere in the body, but those in the brain or spinal cord are more likely to cause symptoms. It is believed that about 300,000 people in the U.S. have an AVM, while only about 36,000 (12 percent) have any symptoms and very few of these people have symptoms severe enough to be life-threatening. About 300 people (one percent) of those with AVMs die each year as a direct result of the condition.
Under normal circumstances, arteries, which carry oxygen rich blood away from the heart become progressively smaller and smaller until they become capillaries, the smallest blood vessels. Capillaries allow the oxygen from the arterial blood to enter tissues and cells where it is required for life. As the cells use up the oxygen, the deoxygenated blood begins to collect in the smallest veins. The veins grow in size until they eventually return all the blood to the heart and back to the lungs for reoxygenation. In an AVM, however, capillaries are bypassed and the small arteries are connected directly to the small veins. In addition, there are many of these abnormal connections giving an AVM the appearance of a tangled up knot of vessels. These tangled knots can vary in size from very small to very large.
Whether an AVM causes symptoms depends in part on its location and in part on whether the vessels leak blood or actually rupture. As noted above, arteries normally decrease in size gradually, which allows the blood pressure also to drop as the capillaries are approached. But in an AVM, the arteries connect right to the veins and expose the veins to a much higher blood pressure than normal. Veins are normally thin-walled because they do not need to withstand higher blood pressure and therefore they are not always able to handle the pressure. This can result in minor leaking of blood, without symptoms, all the way to a rupture with resulting hemorrhage.
If an AVM is small or located away from important structures, it may never cause symptoms unless it bleeds. But if an AVM is located close to important tissue it can press on the tissue and cause symptoms even without bleeding. Oftentimes, AVMs are located in the brain or spinal cord. The brain and spinal cord are tightly enclosed within bone and any abnormal growth can press on these tissues causing neurologic symptoms. Or they may just sit there, for example if they are flat and near the surface, and be unnoticed unless they begin to bleed. Bleeding inside the brain can cause major damage called a hemorrhagic stroke. This may require emergency surgery to remove the blood and to stop the bleeding.
If an AVM becomes symptomatic or if it bleeds, it may need to be treated. There are basically three approaches to treating an AVM and they depend on size, location and whether some of the vessels are actually supplying some tissue with oxygenated blood. One type of procedure is to insert a catheter through an artery and extend it to the AVM at which point some material is injected into the AVM with the hope of clogging it up so no more blood passes through it. This doesn’t always completely work and in some cases cannot be done because too much blood flow might be obstructed. Another approach is through surgery where an attempt is made to tie off parts of the AVM and to remove other parts of it. Because of the tangled nature of the AVM, this type of surgery can be very difficult or dangerous, especially if the AVM is in the brain.
The last technique is to use a highly focused radiation beam to damage the vessels in such a way that over time they simply shrink up and close off. This technique uses the gamma knife technology, which uses radiation as a surgical tool, with no actual cutting through the skin. Further developments in the field of treatment for AVMs will likely come from improved imaging techniques (e.g., MRI) combined with precisely delivered radiation."

How I feel....

how I feel....



That about sums it up.....
I feel terable...
I was put on a doseage of a antideprssant when I had my AVM.
Last night I missed my dose.
Today I feel terable!
I know it is proble just my owe mind playing tricks with me... but it feel bad none the less.

lets try some youtube to go...
on second thought... F$ck it.