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AVM Survivors Network

Please help. Ashton almost died from massive nose bleed related to AVMs


#1

We are in hospital and I only have a couple minutes but Ashton (8) had a massive nose bleed Friday am and basically drowned in his blood and went into cardiac/ respiratory arrest. We are at Johns Hopkins and plan is to keep nose packed but due to the expensiveness of his AVMs they do not want to do much. Any information you can give, please do. I have a Facebook page started if you want to pray for him it is Ashton’s angels. The a team

UPDATE, JUNE 15th:
we are on our 4th week in the Hospital:( It was found that Ashton had a pseudoanerysyms in the sinus cavity. The interventional neuroradiologist placed 29 coils to close it off and a few other veins in the nose. They then removed the packing and it bled again but not as bad. His nose is packed with a balloon and some nasal packing. They are going to attempt to remove again on Monday. Please keep praying and thank you to these that are following us on Facebook:) Also, he as a clot in his vein in the leg. Have any of you had a clot and how was it treated? Blood thinners are not an option.
Thank you:)


#2

I'm so sorry to hear this, Betsy. I will go to your Facebook page.


#3

Have they given him tranexamic acid or another medication to help stop bleeding?


#4

Betsy, we are praying so hard for you. As a friend please let me know if I can do anything to help you. God forbid, if he were to bleed Wednesday, I pray that those Doctors seek assistance from other doctors to come to a solution. I will continue to spread the word for prayers in the meantime. I have always wanted to do an AVM 5k rum 1mile walk family fun day for funding of AVM research and awareness. Hopefullly the 1st annual will be in the fall… I need Ashton’s help to pull it off!!! :slight_smile:


#5

I will be praying for Ashton, Betsy! Please let us know his progress.


#6

Dear Betsy, we are praying for Ashton and your family! I hope the bleed is maintained and there is SME good news and better direction.


#7

How do I get to Ashton Facebook page?


#8

Type "Ashton's Angels" in the FB search box.


#9

PRAYERS on the way!


#10

Prayers your way!


#11

I "liked" Ashton's page. I am so sorry you are going thru this :( I will be praying.


#12

Sorry to hear about your son, Betsy. I will go to to Ashton's Angels Facebook page. I will be praying for you both.


#13

I dont have Facebook but i know something much better................prayers.

God bless i will be praying for Ashton and keep us posted.


#14

You May want to check HHT, and go to a ENT for treatment. http://hht.org/
What is HHT?
HHT is a genetic disorder that causes abnormalities of blood vessels. Most blood vessels in the body of someone with HHT are normal. However, a small percentage of the blood vessels in a person with HHT have a specific type of abnormality.

Blood vessels are the tubes that carry blood around our bodies. There are two types of blood vessels: arteries and veins. Arteries carry blood under high pressure out to all areas of the body after being pumped by the heart. Veins carry blood that should be under low pressure, back to the heart. An artery does not usually connect directly to a vein. Usually there are very small blood vessels called capillaries that connect an artery to a vein.

A person with HHT has a tendency to form blood vessels that lack the capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through the very small capillaries. This place where an artery is connected directly to a vein tends to be a fragile site that can rupture and result in bleeding. We usually call a blood vessel that is abnormal in this way a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya), if it involves small blood vessels. We tend to call it an arteriovenous malformation (AVM) if involves larger blood vessels. So, an AVM might be thought of as a big telangiectasia. The basic abnormality in the blood vessel is the same.

Telangiectases tend to occur at the surface of the body such as the skin and the mucous membrane that lines the nose. AVMs tend to occur in the internal organs of the body. The telangiectases (plural for telangiectasia) and AVMs of HHT occur primarily in the nose, skin of the face, hands, and mouth and the lining of the stomach and intestines (GI tract), lungs, liver and brain. It is not currently known why these abnormal blood vessels tend to occur in certain parts of the body and not others.


#15

Still tops on my prayer list!


#16

Betsy, this is Ben, founder of AVMSurvivors.org. Moderator Louisa sent me this link. How are you guys? If we can help in any way, let us know. Email me ■■■■■■■■■■■■■■■■■■■ if we can help.


#17

Ashton's FB page is pretty hopeful today, Ben. The bleeding has been stopped, and everyone is hoping he gets to go home soon. :)


#18

Keep praying, though!


#20

Actually, the bleeding is stopped because he has a foley in his nose and nasal packing. They attempted to remove 2 times and it bled both times. removing on Monday for the 3rd time.


#21

you're at one of the best hospitals! will pray for strength and a speedy recovery.