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: 18
Latest Activity: on Monday

43 Cauteries last time

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Comment by Bacu on Monday
Allie, you sure have your plate full. Good luck on the 30th. Keepng you in my prayers.

Danibee, your blood work sounds really good right now. Could you be pushing yourself too much. Besides the holidays, we tend to get all the things done that we can't do when we feel poorly. Also, they told me that my GI avm's could be genetic and that I have had them since birth. Who knows?

Had my last sandostatin injection on Wednesday. It will be interesting to see how I do off the medication. Have a very happy, healthy, and Merry Christmas.
Comment by Danibee on Monday

Hey Allie. I'm sorry about everything going on. I can't imagine having to go through all that you are. Are you making sure to take care of yourself during all this?

My Hb is 12.something and my ferritin is 425, so my iron is great after the xfusion - but I still have bad days where I'm exhausted. I don't understand why. Maybe those are the days I'm bleeding more?

Yes, my procedure is coming up soon. Hopefully they can determine why I've got these AVMs.

Comment by Alice (Allie) Elaine Mastello on Monday

Danibee, your procedure is coming up soon. I still can't get a return phone call to schedule a blood draw. 3rd message I have left. Also, found out all my disc from my lower back all the way to the top have collapsed. They will do cauteries for the nerves over the next six months, starting the 30th od Dec. Trying to keep surgery a ways away. Other than that, I am doing OK. HOW ARE YOU????

Comment by Danibee on Monday

How's everyone doing?

Comment by Alice (Allie) Elaine Mastello on December 8, 2014 at 3:31pm

Yes, we all agree! Looks like we sort of do the same thing which is important. I also get hard copies every time from them or print them off their site. Seems like a lot of work, but it is well worth it for tracking purposes.

Comment by Bacu on December 8, 2014 at 2:51pm
I never had an iron infusion just blood transfusions (42). Some of it must have been very good because after the resection I was put on iron tablets for only about 2 to 3 months. I didn't have a slow bleed, I was hemoraging so much that I could have tarred the highway from here to Mobile. I also keep a spreadsheet. On it I keep my BP readings and pulse rate. They would both drop very low when I was bleeding out. Also, important test results and I made notes on how I felt and symptoms I had from various meds, etc. I also requested hard copies of all my test results. Some doctor offices don't care to give you hard copies. The results are yours and you are entitled to a hard copy. You can also get them through Medical Records at the hospital that has an affiliation with the lab.
Comment by Alice (Allie) Elaine Mastello on December 8, 2014 at 2:24pm

I keep an Excel Spreadsheet with my numbers, so I can keep tract of "trends" that my body is doing and how I am feeling. Also, I NEVER accept the word "normal", give me a NUMBER!

Comment by Alice (Allie) Elaine Mastello on December 8, 2014 at 2:23pm

The Ferritin number is the one you want to get and will show your iron stores, what your body "pulls from". Yes, that number is the key!!!

Comment by Danibee on December 8, 2014 at 12:06pm

Ok, you ladies, I'm SURE know how iron blood test results vs. how you feel. I got some of my test results today after having iron xfusion. Total Iron is normal, iron binding normal, % sat normal..... but we don't have ferritin back yet. I'm EXHAUSTED. Have you seen a difference in what is reported vs. how you feel?

Comment by Bacu on December 5, 2014 at 9:28am
Sandostatin (octreotide) is a vasoconstrictor that lowers portal blood pressure to prevent bleeding.

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