Angiodysplasia / Heyde syndrome

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harrietW

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Angiodysplasia / 1) in the jejunum 2) mid sm intestines
I couldn't be more upset. . Waiting for surgeon to come and see me as we speak for jejunum procedure . The are making to send me via ambulance to Calgary South Health Campas for a DBE .. Colonoscopy Ballon scope of some sort very invasive procedure. Then they will do surgery or sorts.
I have recieved 11 bags of blood to date and 5 plasma and were not done yet. I will be in the hospital a couple more weeks easy. And all of this as a direct result of Aortic Stenosis. ..
Any body wanna weight in !?
I have complained of these symptoms for 3 yrs since l was diagnosed with Rheumatic heart disease.
Now my understanding is this is a reoccurring problem and l could just be getting started .

I want my life back ..
I wish today l could undo everything.
 

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Paleowoman

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Dear Harriet - at least they have discovered the problem so now have something to work on. I found this about Heyde's syndrome: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3131716/ which seems to suggest aortic valve replacement is the treatment for this, but of course you've now had aortic valve replacement. I know it must be terribly difficult for you but you are surely in the best hands at the moment and you will get your life back.. You're right though as you mentioned in a previous post that it was a mistake that this wasn't investigated before you had you AVR. Am sending you good thoughts and prayers xxxx
 

harrietW

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Thanks Paliogirl. .
I haven't stopped reading now for 2 hours
Hormone replacement therapy is a treatment after initial procedure to remove or brand or whatever they decided. In cases like mine they are likely to reoccur and you can endup with a whole Damn stomach /intestines full of them especially in advanceD cases. This has been going on for years l was spitting up quarter size blood clots 3 years ago actually right on the middle if a stress test actually.
Yes very glad they found the source the problem ect. I just read a case study almost exactly my story.

I have a business that l will have nothing left to go back to when this is said and done that l have continued to pay all the expenses at for the last 3 mths.
 

honeybunny

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Geez. It's like one nightmare after another for you. I'm glad they got to the root of the problem and have a game plan to fix it. I can only imagine how frustrated you are feeling. I'm sorry, too, that you are dealing with so much on your own. You are incredibly strong. Please keep us posted. Prayers continue~
 

harrietW

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Thank you hunybuny.
Michele l am so used to being on my own that l hardly notice it anymore. I'm fine honestly. . I am really happy to they found the answers ..
Sending a Lil love you way Michele Xx hope you are doing well Xx
 

Paleowoman

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Do your cardiac surgeon and cardiologist know that you have now been diagnosed with Heyde's syndrome Harriet ? xx
 

harrietW

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Just a quick update

Paliogirl yes 2 of the dr. On call at the hospital are both cardiologist and internal medicine specialist. One of which originally diagnosed me with lung and heart disease . Also has treated me everytime l arrive in emergency.
I had the angiodysplasia in my jujunum attended to yesterday cut /snippets and cauterizeD. Hopeful that it's under control.
Next l am waiting for DBE test they will transport me to Calgary hopefully next week and quite possibly surgery on my middle of my small intestines. .. sigh !! It's getting very depressing. So that's the latest update. . I'm stuck in hospital another weekend waiting.
 

pellicle

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harrietW;n863677 said:
Just a quick update
...I had the angiodysplasia in my duodenum attended to yesterday cut /snippets and cauterizeD. Hopeful that it's under control.
glad that its progressing in the right directions :)

http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0102-67202007000200013
BACKGROUND: Angiodysplasia is a distinct mucosal vascular lesion associated with acute or chronic gastrointestinal bleeding. It occurs most frequently in the right colon and is extremely rare. Its etiology is unknown, but theories of its pathogenesis have evolved from its similarity to colonic angiodysplasia and the lesion appears to be associated with renal insufficiency.
CASE REPORT: Sixty-five-year-old woman with repeated melena and severe anemia due to angiodysplasia in the first portion of the duodenum. The diagnosis was done by upper endoscopy. As the patient presented repeated gastrointestinal bleeding with hemodynamic instability and recurrent anemia, surgery was indicated. At laparotomy the lesion was identified and resected with an Y-en-Roux reconstruction. The patient went on well at the immediate and late (four years) postoperative periods with no more recurrent gastrointestinal bleeding.
CONCLUSION: Although most of the patients suffering from gastrointestinal angiodysplasia goes on well with conservative management, there is a small portion of them that will need a more aggressive approach, as in this case.
Best Wishes
 

AmyBL

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Glad to hear it was located and cauterized. Is it a waiting game now? Will you still go to the hospital by ambulance, or did that happen all ready? Thinking of you.
 

harrietW

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AmyBL hi Xx
Yes a waiting game .. still in lethbridge hospital waiting for transportation to Calgary it's Monday and not even a date or news of test DBE Ballon if they can reach the bleed and depending on the size and so possible surgery to remove it or portion of the intestines. I am board to tears but hopeful this will be soon over .. and life will fall into place. Xx 😘 thinking of you as well.
 

Warrick

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Hi Harriet, I have been following your posts and just wanted to wish you well and the very best from down here in NZ.
Warrick
 

harrietW

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Warrick thank you so very much Xx

Paliogirl thank you for the beautiful flowers Xx Hopeful that today things will move forward a bit .. been at a standstill since Thurs. . Waiting to transfer seems it's a procedure. Again thx u ❤
 

Midpack

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"That which does not kill us makes us stronger" (Friedrich Nietzsche).
You will surely overcome all of this Harriet! I wish you the best!
 

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