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Maggie M. Family Member

GI bleed

My Uncle has been living with his LVad for many years. He has recently been having complications. He's been in hospital over a week with a GI bleed they can't seem to find. He's had two colonoscopy and swallowed a pill that had a camera in it. They went in today and cauterized three spots that could be causing it, but there was no obvious tear. Later today, more blood when he had a bowel movement. I keep reading bleeding in the gut is common with Lvad. It seems like things are going downhill. Please give me any info you can
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Glenwood T.

Hi, I am a 69 yo male that had a Heartmate II implanted in August of 2015. I had a difficult time the first few months because I was very weak and tired. HGB was at low at 7.0. I had every test imaginable to find the bleeding. In January of 2016 I was at home and I just fainted and fell to the floor. I was admitted to the hospital and underwent an upper GI test. The test reveled a blood vessel in the wall of my stomach was constantly oozing blood. The vessel was cauterized and I immediately started to get better. I have had no further bleeding. My HGB is now around 12.8 consistently. I hope the doctors can locate the bleeding. Good luck.
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In reply to by Glenwood T.

Dick T.

I’ve gone through this about six times. Had to swallow the pill cam for them to find the source. I’m told the bleeding is caused by avm’s that form and then break off. This happens because we have a continuous flow instead of a pulse. They finally started me on Octriotide shots to prevent the avm’s from forming. I get a shot in the butt every 28-30 days. It works. Haven’t had a GI bleed in over 6 months. 

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Claudette S.

Hi, any updates @magmead on your uncle this is the exact same my mother has been experiencing. She’s been in hospital since for over week and they can’t seem to find the bleed. She’s had 3 transfusions thus far. It sounds like they will have her to swallow the pill w camera to go a bit deeper. They didn’t locate anything with the endoscopy and colonoscopy.
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William A.

My husband in Emory hospital in Georgia with internal bleeding. Any words of comfort. 

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In reply to by William A.

Shirley C.

How is your husband? My brother has been at Emory since may 8th 2021. He was bleeding and they kept him til he got his heart in early July. He is still there and I can’t find out much. His mental status is why he is still there. Be careful and watch what they do. I don’t trust them at all now. Brother has no short term memory and no one has even discussed this with me. Just yesterday I told him he had surgery in July and he ask what kind of surgery. He has been told 100 times he has a new heart and he gets so excited. But next day or later in the day you tell him again and he gets so excited. Be very careful ask questions!

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In reply to by Shirley C.

William A.

My husband is doing well. Thanks to Jehovah. We came back to Florida as he could not travel any more.  Glad the condo here didn't sale. His team in Tampa is very good. But my husband too had some memory loss. But not to bad. He just forgets how to program the tv or work on the computer. How to do small things that he use to do all the time. At it was hard for him to admit that he could remember. But now he is ok with it. So he takes his time. He is a very spiritual man so that helps. And he does things that helps me. Like dishes and has coffee ready in the morning. So it  feels like he spoils me. So I appreciate it. We have to be patient and it takes time for them to recover. It took him like 3 or four months to feel better. He does work on his sodukos they help him keep his brain active. 

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William A.

Same here. Don't know much yet. They will tell us more tomorrow. A little scared. We are jw so we don't do blood transfusion. 

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Juanita P.

I am so sorry to hear of the GI bleeds and hospital stays with the LVAD.  I'm an LVAD patient for almost 5 years now, and remember all the pain and suffering connected to the bs LVAD.   I've had a couple of transfusions and hospital stays for bleeding....I too had to get colon scopes, the $500,000 dollar capsule that you later move out in the toilet.  Takes 1,000's of pics.  Nice to know.  Although the results, no problems with stomach, which I had told them I didn't have, and maybe needed cauterizing in the colon, hmmmmm, which could have been done on an OUTPATIENT BASIS.  THEY AGREED TO THAT, HOWEVER, THE BLEEDING STOPPED and I WAS FELT GREAT.   I can't help saying i'm so sick and tired of this LVAD and all that is connected to it.  I can only say with experience, please, please don't let the hospitals just do what they want.  Your not a pin cushion or guinea pig!!!!!!! Watch your INR, real important that is not too high and any roughage, popcorn etc. or excessive alcohol. Also, prior to the first episode over a year ago they had me on 325 mg. of Aspirin with the coumadin...Liquid gold blood, how bout that.  However, they have taken me off.  Thank God.... enough is enough.  Please ask questions, have an advocate, and if the manage care hospital system can run up a bill, they surely will.  If you don't have good insurance, you wouldn't be there that long, you can bet your bottom dollar on that.  I will never swallow another capsule from Mars, ridiculous and they did the cart before the horse with testing and wanted me to stay longer, nah gonna leave, to do another scope and cauterize.  Guess what?????? The bleeding stopped and I was home... I must add i do empathize with all of you going through it, as I am a patient and hospitalized out of state with NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO VISITORS.  Came home week later SLEEP DEPRIVED, YOU NAME IT.  Honestly I challenge their reasoning behind all that they suggest or do....and you know what?  I don't hear anything from them other than test your INR and coumadin tabs, which I'm already on it.  I take one BABY DOSE OF HEART PILL and the rest are vitamins.  I work out 3/4 times week, and maintain my home ALONE!!!  I'm looking forward, if God will, to have this ball and chain removed.  Personally, I've had enough of their phone calls, weekly for INR.  I'm a 5 year vet....i know coumadin levels....and by the way there are other thinners that can be utilized better than coumadin; however, they are not tested with the LVAD.  So the change is not coming too soon.  I pray that you all get well, make sure advocates are alerted and educated etc.  And, also keeping yourself educated, which asking questions and getting SOLID TANGIBLE ANSWERS.  

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William A.

Well they found the bleeding and took care of it but we were recommended not to travel as we were heading to Seattle which is my side of the family. So we came back to Florida. By the way this is Rosa his wife.  My husband is the patient😁