Information

Gastrointestinal AVMs

I am looking for others with bleeding stomach and intestinal AVMs. Mine has been particularly bad this last year. Had 20 cauterized only to have them rebleed. I get three weeks of iron infusions every three months or sooner right now. Are there others out there like me?

Members: 19
Latest Activity: Jan 16

43 Cauteries last time

Discussion Forum

Thalidomide and GI AVMs

Started by dancermom Jan 26, 2014. 0 Replies

Here are some links to resources about thalidomide and GI avms:http://clinicaltrials.gov/show/NCT00389935…Continue

Comment Wall

Comment

You need to be a member of Gastrointestinal AVMs to add comments!

Comment by Bacu on January 16, 2015 at 11:05am
Dancermom, that device is great. Hope it's used widely throughout the healthcare industry. Thanks for sharing.

Moderator
Comment by dancermom on January 16, 2015 at 10:58am

Good luck with your move, Allie.


Moderator
Comment by dancermom on January 16, 2015 at 10:58am
Comment by Bacu on January 16, 2015 at 10:56am
Allie, you don't have time to be sick gal! Moving into that new house is going to take all the strength you can muster up. It's going to be really exciting too! I know what you mean about those veins. One nurse started crying, she just couldn't bring herself to try again. By then my arms were so numb that it was hurting her more than it was me. I'm doing fine. I stopped the Sandostatin in December. Blood has been holding and side effects are minimal. I'm basically back to normal at this time. I know you'll have fun designing and decorating that new home. Enjoy and be well.
Comment by Alice (Allie) Elaine Mastello on January 15, 2015 at 11:22am

Oh, did I tell you guys, we are building a new house and are trying to sell this one. We move in two weeks, just 5 miles down the road, but it is so nice!

Comment by Alice (Allie) Elaine Mastello on January 15, 2015 at 11:20am

Yes, It took that long to get someone at the drs office to even respond and then it was a struggle to get her to talk to the dr. to see if I could get my iron. I will need at least two infusions but at least got one scheduled. Just got back from getting my lower spine cauterized to kill the nerves and help with the pain. My neck will wait until Spring. Think I may have mentioned my disks in my back are all collapsed. Just another thing in life. My veins are so bad, getting an IV started is a HUGH challenge. I bet lots of us in this group have issues with that very same thing.

Bacu, thank you for your messages. Hope you are hanging in there and doing ok, let me know how you are.

Comment by Bacu on January 14, 2015 at 6:11pm
Allie, you first wrote that you needed an iron infusion on Jan 9th. Have you had one already this week or are you going to have to wait until Monday, Jan 19th for your first one? That's 10 days! Are they waiting for you to get to a critical condition before they do anything? I'm afraid our healthcare system is headed in the wrong direction.
Comment by Alice (Allie) Elaine Mastello on January 14, 2015 at 11:19am

I will get another iron infusion on Monday, I managed to talk to the nurse who reached the dr. Have to keep pushing. How is everyone, I have not heard from anyone.

Comment by Alice (Allie) Elaine Mastello on January 9, 2015 at 7:17pm

Thanks Bacu! No iron infusion yet, can't even get through to the dr to get an answer, you get passed around like an old shoe. I am being aggressive and, I know you have to be that way, don't like it but....otherwise they will sweep you under the rug. Your encouragement means a lot! I too hope everyone on the site is ok, have not heard from anyone either...thank you so much for your reply!

Comment by Bacu on January 9, 2015 at 6:52pm
I notice that no one has been on this link lately and hoped that all were doing well. So sorry, Allie, that your having a bad time right now. Hope in the last 5 hours you have been getting another iron infusion. One thing I learned throughout this experience was that I needed to stay on top of my condition and be very agressive about my care and treatments. I know you are, you've been at it longer than I have been dealing with these avm's. Your strong and have given so much support to the rest of of dealing with this illness. You will overcome the fustration and discouragement. Just keep repeating, "I am woman, hear me roar!"
 

Members (19)

 
 
 

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support AVMSurvivors.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Photos

Loading…

Blog Posts

Anxiety.

Posted by Captain Tilly Harkness on January 27, 2015 at 7:04am 21 Comments

After 8 weeks out of hospital I have been feeling quite anxious and worried about my brain bleeding again and how my avm is healing but on Friday I had my first panic attack and it was not nice. My friend took me to my G.P who was brill and gave me… Continue

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service