GAVE disease

[Sheila860]

What is known about GAVE disease and the prognosis? I am scheduled for a blood transfusion tomorrow, (my HGB is 8.7 & HCT is 27.3)  and iron infusion the following day. If anyone has answers please let me know what you have learned. I was diagnosed with what they believe is GAVE disease after double balloon scope. Numbers are dropping and I'm scared! What kind of side effects go along with the infusion therapy? Any info will be appreciated.

[harv24jg]

I am a 72yo retired ICU/ER Nurse(also an Electrical Engineer) I had Hep C from a dirty needle stick in ICU (1990) Over the next 25yrs I battled Hep C with the only drug availably...Interferon. Did not work. Few years later tried pegulated  interferon. Worked but I could n't keep Hgb > 8. Not good. Kept passing out. Long story short, a drug finally came out that was 99% effective...Harvoni(My name is Harv. The stuff was made for me. lol However, it had already beat up on my liver for 20 some odd years and left me with stage 4 cirrhosis. There is no stage 5. Heretofore, I had been "compensated" with no clinical symptoms and good lab work. Then(about 10 days ago I twice passed a large amount of tarry black liquid stool. As a nurse I immediately knew it was an upper GI bleed. Also as a nurse, I knew that this bleeding could be(probably is)  the results of Portal Hypertension/cirrhosis..
After gastro. MD informed me that I have GAVE. Gastro Atrial Vascular Ectasia or "Water Mellon Belly". Got an appointment in 7 weeks. I have between now and then to generate all my relevant questions.
PS They took me off my Prodaxa (Anticoagulant.) I was taking for previous a-fib. Have had one previous stroke from a-fib. Difficult decision....hmmmm….Stroke or bleed to death. What do you guys
As I understand , there are several other medical issues that are associated with GAVE as CalGal and you stated . By the way, your guys synoptis was very informative and accurate. To add to this list I submit:
1. Sjögren's (pronounced "show grins") syndrome is a chronic (or lifelong) condition that causes dry mouth and dry eyes. The syndrome also can affect any of the body's glands, including those that secrete sweat, saliva and oil. I have this also
2. Portal hypertension: Portal hypertension(Can't be measured but I'm sure I have) involves the portal vein which carries blood from the digestive organs to the liver.
The most common cause is cirrhosis of the liver, but thrombosis (clotting) might also be the cause.

I would like to find a support group for GAVE. This site does not have one.

[opie74]

I have MS  AND GERD. I went in to have my esophagus dilated.  My Dr found GAVE "watermelon stomach". As of now, I have no symptoms of GAVE. Should I expect it to stay asymptomatic?

[marylouise229]

Hi, CG,
My mom has Gave and has been in and out of treatment for three years, numerous ablations, countless transfusions ( iron and blood) and still requires ongoing intervention.  What does an antrectomy procedure entail and what are the risks?

[washhouse]

I have had blood tranfusions and only effects are feeling better...I am due to see a Dr. about an Iron infusion, which I think is like a blood transfusion...I plan on feeling better after this...But I am concerned as not sure how you live with GAVE...Unfortunately the Dr. talked to my daughter just after my upper GI Endoscopy and I was not aware enough to hear and ask about it...I am 76 and really not ready to hit the rocking chair...I am tired of being tired and breathless all the time...Good Luck to you...I hope to find out more when I see the Dr.

[gbenn]

My husband has GAVE disease, about two months now with 11 units of packed blood and double that amount in iron.  He feels good following these treatments and the endoscopies with cauterization, but it doesn't last long.  This disease can be caused by several different medical problems such as portal hypertension (liver involvement), diabetes, and many others.  The cause must be found and treated, otherwise the stomach continues to erupt after repeated cauterizations.  He just underwent his third and only treatment at Mayo Clinic.  We pray Mayo resolves this mystery.

[CalGal]

I understand that episodic transfusions can be required in some chronic cases, but most reports suggest that bleeding is rarely acute or massive. But I know that's of little help when you're the one in the 'middle' of this. And yes, your doc's statement about the problem subsiding is what is felt usually happens. It unfortunately appears that you're in the minority. Sadly, even in the medical databases that keep track of the 'newest and greatest' there is very little known about this condition.

What is suggested, however is that if bleeding has been positively localized to the stomach, that an antrectomy may prevent recurrent bleeding. But that procedure is usually reserved for patients who totally fail endoscopic therapies because the operation carries with it some unwanted consequences. However, considereing the use of surgeries these days, docs might consider something along the lines of a gastric by-pass.

There was one suggestion on the use of combination estrogen/progesterone therapy. But there is little to no evidence of a track record for this, except to decrease the GI bleeding. But the ectatic vessels persist.

[Sheila860]

The AVM is in my stomach, I have had four different endoscopy with 2 seperate laser treatments. I was under the impression that once the lesions (which is what my Dr. called them) were treated the problem should subside. This has not been the case, I have been losing blood for almost a year, 4/12/07 I was hospitalized for a GI bleed, became septic, congestive heart failure, the works. Thank God for my Gastro team as well as other attending Dr.s This has been a nightmare. I am now back at about the same level or even a little below where I was last year. I also had read that GAVE is usually associated with Lupus or another primary disease. This has not been indicated in my case. Very frustrated right now, thanks for the info.

[CalGal]

From what I understand GAVE belongs to a group of GI bleeding problems which are referred to as Arteriovenous Malformations  (AVM). So it's kind of like a mass of arteries and veins that 'are' there' and shouldn't be 'there.'  AVMs can cause chronic anemia or acute GI bleeding if they're left untreated. GAVE, in case you haven't been told yet, stands for Gastric Antral Vascular Ectasia, although I gather that your AVM is not in the stomach?

GAVE when it's found in the stomach is often called 'watermelon' stomach and when they're in that location, docs will go in and selectively laser ablate the 'mass' after it has been mapped and it's usually treated quite successfully.

From what I've read, this condition can more often be found in those with lupus, so have you been checked for that problem?