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AVM Survivors Network

Feeling weak tonight, just need somewhere to vent

So I hope you dont mind if I vent here. I am in tears here.. As some of you know I was just diagnosed with a AVM in my lung in March and it has yet to be treated. I had an appointment scheduled to get it embo'd but it got delayed. And well, for the last month i've just been ignoring it all and it just seemed to hit me all again tonight...I mean dont get me wrong there hasnt been 1 day it hasnt crossed my mind but to the point of tears hasnt happened this past month, till tonight.

I mean I can deal with my lung avm, i am scared yes but i know i'll be okay, but its everything else i cant deal with, like the fact that i know they said with lung avms its like a 90% chance i have HHT, a genetic condition which there is a 50/50 chance i passed to by 3 children, ages 11, 9 and 6.. and the fact that i have to get a brain scan because there is a chance i have an avm there too. Me, I can deal with it, but I cant my kids, I am so scared. My oldest just started to get fairly frequent nose bleeds, which he has never really had before, which is a sign of HHT. I know I just need to take it step by step and relax till I know for sure whats going on and deal with it from there. but like I said tonight, I am just feeling so weak, sad and scared.....

I am contacting my closest HHT center tomorrow and hopefully get the ball rolling on that genetic testing and everything else... :*(

Anyway, thank you once again for listening.. I just needed to let off some steam :(

I hope everyone is well,

Kelly

I just want to add to my post because my mind is still going a mile a minute… I know instead of whining about it or feeling sorry for myself or my family, I should be thankful, that I found out before anything bad has happened, and I know it could always be much, much worse… But I am sure all you parents out there know the heart wrenching feeling of seeing your kids in pain, or suffering… its just killing me, and I need to be strong and do what I have to do to make sure they stay healthy.

Stay positive and vent on here whenever you need to, we are here for you and each other. It seems like we get bad news on top of bad news, but we have to stay strong!!

Hi, can you please explain to me what a HHt is I have not heard of this one.

Yes you do need to stay strong and yes you do need to take a step back and wait until at least the testing is done on the children. You are freaking out before you know if they have anything or not. Some times kids just get nose bleeds, from the heat or a hundred other things. BUT I would be freaking as well, there is nothing worse than your kids being sick or hurting; I feel for you, and that is why we are here so you can vent and say anything at all. Get everything off your chest and sometimes you feel heaps better afterwards, don't forget you need to look out for yourself as well as the kids.

Have a nice long soak in a hot bath with some nice oil in it, maybe this will help

Stay strong and take care

DM

We also have three kids 12, 10, and 7. Our middle child has aspegers and was just diagnosed with wolffe Parkinson white syndrome, a rare heart arrhythmia. We also will be testing for HHT in the near future. I would live with my AVM and it’s risks forever if I could protect my children from one minute of worry, illness or pain. Like you my emotions come in waves. I am repeatly told about how strong and positive I am. That’s great but those people don’t see me when I’m about to break. I’m glad we have this forum to help us cope. I have no great words of wisdom but never feel that you are alone. xo

Kelly, you every right to vent, be weak, sad and scared. Always know that we are here for you, day and night. Stay as positive as possible…I will pray for you and your family…Keep the Faith, good Friend!

Hi DM H Sydney. HHT is a gene disorder...

http://hht.org/about-hht/

There are some people on here whose children...siblings...etc also have AVMs. While my AVM was in the brain...my first cousin's was a pulmonary one. We both survived and did great!!!!!!

Dear Kelly:

I know it feels frustrating and the tears are flowing but this is the place for all those feelings. I too have felt the same way sometimes about my condition and wanted to talk with people who "really" understood. Do know that this is the place because we all have been in your shoes at one time or another. Yes, our conditions may be a bit different but deep down we all have had those feelings.

I know you are feeling all alone and as if no one understands or cares. You are not alone!

We are all here to support you and provide the shoulder that you need. We are here 25/7/365 so do know that you can always log in and share you feels with all of us. Do know that someone will write back to you and that you can share everything with us at anytime.

We are here for you. Please know that you are NOT alone. We all care about you regardless of the fact that many of us have never met...you are NOT alone.

Do try to reach down deep within the crevices of your being and find that "positive place" and go there...knowing that you are not alone. Please remember that things have a way of working themselves out and your children CAN see you as a beautiful role model, so whatever situation they may face in the future they will know that I can follow Mom's example. None of us knows what the future will bring and we can assume that something bad will happen and it may not but if it does...do know that YOU can be a beautiful example...yes you can.

There is absolutely nothing wrong with "an example" crying and sharing their feelings. It doesn't mean you are weak...it doesn't it just means "you have a heart." You do! You are loved!

Hi Barbara, thanks for that, the next time my son needs a MRI to check the growth of his Chiari I will make sure they use contrast just to make sure he does not have an AVM as he has been getting headaches, migraines since he was about 6.

Stay strong and take care

DM

Barbara H. said:

Hi DM H Sydney. HHT is a gene disorder...

http://hht.org/about-hht/

There are some people on here whose children...siblings...etc also have AVMs. While my AVM was in the brain...my first cousin's was a pulmonary one. We both survived and did great!!!!!!

I know the feeling. I’m in tears from time to time as well because of this. Hold your hands and hug.

Hey! I bled out due to an avm in my brain in june of 08… and its not whining, you are scared and trust me, you are NOT ALONE! I have broke down and cried and even got very angry with myself too… I also get angry thinkin what have i done to my kids and they don’t deserve this, but with my experience they are more worried about me when I show these signs of being scared and angry… I had my avm removed in oct. of 08 and had emotional and physical issues ever since…About 6 months after havin it removed, I was diagnosed with epilepsy and my life has changed dramatically since then… I hope your know there are others out here like you and me that get the same way you are right now… I am prayin god eases your mind and your kids mind… God bless you and please stay strong… You are in my prayers!

Hi Kelly,

You have every right to feel what you are feeling- AVMs are scary- and you sound like an awesome mom thinking about your kids. And that is what makes it tough- you want to protect your kids from anything and everything. I am praying that my baby never deals with what I Have.

But what I can tell you is take things one day at a time, one step at a time. I am sorry you had the delay- that makes things so tough. I hope you get the treatment for your lung AVM and that your brain is clear.

Sending you lots of hugs and support! Feel free to vent anytime.

Patti

Hi Kelly,

Welcome to the group. I'm so sorry you're having to experience all that comes with AVM, especially the worry and concern regarding your children. And I know the waiting makes it all that much more difficult.

Just wanted to say 'hello', and to let you know I'm hoping all the best for you, and for your kidlets.

Please keep us posted on how you're doing, and take good care.

Tori

Hi there I went through the same exact feelings that you are going through now! my oldest is 19 so she will be able to go ahead with screening! if your concerned for your kids depending on there age go ahead and get them screened! my youngest 5yr old has been screened already for brain Avms and thank the lord she was negative for that but there keeping track with pulse ox for the lungs if her levels drop then a CT or echo bubble will be requested! but untill then she wont need ct till she is 10! there is so much more knowledge and treatments for HHT and avms then there was years ago! I am not sure if you have contacted hht.org? Trish will send you any info and guidelines you want and will help put your mind at ease! I had genetic testing done but didnt do me any good I apparently am 1 of the 20% that the gene causing my HHT hasnt been found yet so no way of getting my family genetic tested we are on a wait and see and thats what scares me! BUT I am blessed to know I have it so I know what signs to look for! and no reason to feel guilty about passing it to your children we didnt know! and our parents didnt know! and there parents didnt know! give yourself a break! MOST important get yourself EDUCATED on HHT!!! I poured myself in to learning everything I could possibly find about it and it made me feel so much better! if you have any questions you are welcome to ask! or send me a message on FB! hang in there!

Kelly,

I am new to this board as of yesterday. Your post resonated with many of my experinces. The range of emotions I experience with a cavernous malformation in my brain range from rage to fear and everything else in between. It's not just for me, as you wrote, it is for my four kids and my siblings. My two brothers and sister are the most like candidates for a CM. It took some digging in my family history but I finally discovered a secret that my grandfather had it. No one had ever told me until last year! I

How to respond to all of this? You are medically doing everything you can. Emotionally venting to those who have had a similar experience helps. Before I found this board, there were very few other people living with seizures that I could find. Just being with them, sharing our experiences, was "healing."

The yo-yo effect - that is what I call it - is very real. Good days and bad days; up and down. All I can write is that where I am now is trying to meet fear with faith... and not succeeding all the time. Give yourself time to deal with this.

Finally, your post hit me. It is your name. My only daughter shares it. I have an inkling of what you are going through.

Stay positive before them and let it out to us.

George

We never know what we might be passing on to our kids, and that's frightening - but keep this in mind... you gave them life and life is good. Medical technology is advancing at a rapid rate and doctors are able to do so much more now.


So the goal is to get the word out about AVMs so there is less mis-diagnosis and more research on fixing them. That's what you can do for your kids is just keep talking to people about it and find ways to get the word out. Together if we all do a little bit, we can spread the word. At least you will be watching for symptoms and will be able to be their advocate if something does come up.

You're a good mom. I can tell. Just love them every day and know that every day you are together is a gift.

Hope that helps. I will keep you (and your children) in my prayers. :-)

I am 46 and stil trying, been through caveman to people paying attention to AVM and Heamangioma’s. Strokes are a side effect of chance to attempting life. But lucky me I am still here making it. Grasp the moment and Love those who need it more, the healing will take place at its own pace. Just live. No one said it was going to be easy.

Dear Kelly Elizabeth:

I know it must be difficult to think that your children my be affected by this but it will be alright. This is definitely the place to come and vent…we are here for you. We all are!

No, I am not in the same situation as you but since I had an AVM I know how difficult that can be…it can be a little scary at times. You wonder about the future. However, please know that you must “stay positive” and know that you cannot see that far ahead nor will you ever know what it will bring. All you can do is to be there for your children and let them see that you are being strong. Sure, it is fine to cry…that is totally fine but also let them see you SMILE.

You are not alone. I just returned from Chinese Christian Camp and I told everyone that I’d see them next year. To be honest, (and it did cross my mind) I don’t know if I will be here next year…anything can happen. However, I just must be positive and know that there are those out there in this community that care about me and I can ALWAYS write and know someone will respond.

We all CARE about you! We do! You are NOT alone…ever!!! Please know that because someone will always respond to you. We have all been there in one way or another and some have been in the hospital for a year (like me) and survived that experience. I try to reach out to others because so many have reached out to me on this site when I desperately needed it. They have…they have been drop deal wonderful…especially when I’m wake in the early hours and am crying. Yes, it still happens to me too!

Again, I can’t relate totally but some…but I want you to know that ALL of our ARMS are surrounding you. You are loved!!!

All the best,

Judie

Hi kelly, I hope you are feeling better now. We are all here for YOU! We cannot be supportive if we do not know when you need us to listen, so fire away. Sometimes I feel like I am eating the bear, sometimes I feel like it is eating me. It happens. We all know it, we all do it. Thankfully Ben created this wonderful place for us to connect with one another! Hugs and hope for you and yours.

FB

Buck up Kelly – I’ve walked in your shoes and I am a grandmama. Get your PAVMs embolized ASAP – I am one of the rare ones to have a 3mm PAVM rupture in the left lung - it bled out into the pleura sac around the lung. I was in bed, rolled over to my right side and came up screaming. In Aug 2000, I had the smallest PAVM (size of the feeding artery) to be embolized. You do not want this to happen to you.

HHT cannot be cured, but it can be managed. For the most part, I have had a fairly normal life. Here is some tried and true advice: get your rest - 8 hrs a night sleep is a must. Keep your blood pressure down, it puts less strain on fragile telangiectasias/avms. Get your kids screened and tested at an HHT AVM clinic close to you. Try to convey calm and confidence to your kids - remember “nobody’s perfect.” Stay away from “what if” and make a list of these fears and share with your Doctor. You deserve answers and ways to control nosebleeds, tongue bleeds, watch for G.I. bleeding, shortness of breath and anything out of normal that your kids exhibit. Work up a game plan with your Doctor. God Bless.