Heyde's Syndrome

[Kimsminiatures]

Hi, I am a new member here and I am due to have aortic valve replacement on 21st March. Does anyone have any experience of Heyde's Syndrome? Or gastrointestinal bleeding before/after surgery? I have googled a lot of information but I would love to talk to someone that has personally experienced this. Many thanks for any help.

Kim.

 

[Paleowoman]

Hi Kim - there was a forum member here, HarrietW, who was diagnosed with Heyde's syndrome post aortic or mitral, or both, valve replacement. She had been given a mechanical valve and, from what I remember, the warfarin that is given with a mechanical valve caused the Heyde's syndrome to be highlighted - she had an awful lot of trouble with a lot of gastrointestinal bleeding. Had to keep coming off warfarin. Harriet doesn't appear to have been on the forum now since last summer but you might want to key her name in the search section and read some of her posts. Maybe even PM her ? The takeaway message is get a tissue valve so as to avoid warfarin (not that getting a tissue valve is a guarantee of no warfarin). As long as your surgeon is completely aware that you have Heyde's syndrome.

 

[Kimsminiatures]

Thank you for the reply Paleowoman. I did read through HarrietW's posts, scary indeed! I have attempted to send her a private message but with no success it just keeps telling me that "HarrietW has exceeded her private message quota". I hope she is ok and that its just a matter of not keeping in touch with the forum.

 

[Paleowoman]

Hi Kim - Is the reason you are having aortic valve replacement due to Heyde's ? Bear in mind that Hsrriet's doctors didn't know she had Heyde's prior to surgery.

 

[Kimsminiatures]

Hi Anne,

No, I have severe aortic stenosis and was then found to have iron deficiency anaemia. Despite repeated infusions and transfusions my iron goes up but my haemoglobin drops again very quickly. After finding no reason for the gastrointestinal bleeding on Endoscopy, Gastroscopy and Colonography the docs have decided that it must be Heyde's Syndrome a.k.a. angiodysplasias in the small intestine. My problem is that the surgeon (don't really get a choice of surgeon here) wants to go with mechanical valve because of my age (I'm 59) which of course means Warfarin and I'm scared that it may be something other than Heyde's and will continue after the surgery and I'll end up with more bleeding problems. I have asked for a tissue valve instead but they are reluctant because of the issue of repeat surgery. I have some other medical issues which makes me high risk for any major surgery. I feel like I am stuck between a rock and a hard place.

 

[Agian]

From what I remember (?) Harriet had a pill cam. Apparently, it's a small camera you swallow and it films your small intestine. That might settle the diagnosis. The tests you listed can't look at your small bowel.

 

[Paleowoman]

Hi Kim - no wonder you are concerned. I wish Harriet were around to join this thread. I do seem to remember that she had some issues for a couple of years prior to surgery which were being investigated, and I do seem to remember her surgeon said something to her after surgery when all the bleeding issues ensued that he wished he'd known she had this before he did the surgery. Please make sure that your surgeon knows that your docs have decided you have Heyde's syndrome. Heyde's syndrome causes or comes with aortic stenosis and appears to be treated with aortic valve replacement, but reading Harriet's experiences you can see that anticoagulants would appear to not to be helpful (an understatement) which is why they use tissue valve in Heyde's. What does your cardiologist say ?

 

[Kimsminiatures]

I am aware that those procedures do not show the small bowel and the gastro doc was talking about doing a pill cam but when I saw him last week he informed me that he had discussed my case with colleagues and they had come to the general consensus that it would be unwise to prolong my surgery any further to get this done. Due to the public health system here in Australia they would not/could not, book me in until April and surgery had already been delayed since 7th December.

I realise that they are making an assumption regarding Heyde's Syndome and so are the cardio's, which is why my surgery date is only tentative (again) and will not be confirmed until they have had a meeting to decide whether to proceed with surgery or investigate further.

I just want this whole thing done and dusted, I want to start to feel better, to get my life back and not have to think about it all of the time. I want to be able to play with my four adorable grandchildren - I don't want to be remembered as the Nanny that could never play - I want to be able to laugh again without struggling to breath, to be able to talk without getting short of breath. To just get on with my life.

I guess that if I am honest with myself, I was looking for reassurance from someone who had experienced this dilemma and that they would say "don't worry Kim, it will all be fine".

 

[Agian]

Hi Kim, I didn't realise you were from Australia.
My advice is to hound them. Don't allow them to ignore you.

 

[pellicle]

Kim

... My problem is that the surgeon (don't really get a choice of surgeon here) wants to go with mechanical valve because of my age (I'm 59) which of course means Warfarin and I'm scared that it may be something

that's not entirely true ... even without private you can go see some surgeons who do work (always both private and public) and get your surgeon that way. I got my Dr (Jalali in Brisbane) that way and it wasn't until admission that they even asked if I had private health care (as it was going through public).

Like Ian says, don't let them push you around or ******** you.

Also, I'm on a mechanical and warfarin feel free to ask any questions, but if you have a propensity for GI bleeds (Heydes syndrome would suggest that) then your surgeon seems to me to be reckless. I would totally understand your apprehension and would consider it something which would select against a mechanical valve.

I hope you find some answers, feel free to vent here or ask us about how to shove and get through what you want ...

Best Wishes.

 

[jwinter]

Hello Kim and welcome. Lots of people here and lot of different situations.

I do not have what you have but DO have blood and bleeding issues. I am 61 and just had my second AVR. I have gone through extensive testing for the last 10 years and they just can't find it (where the blood is going) but taking iron helps those numbers and will take for life I guess. I also have non alcoholic cirrhosis of my liver with varices that have bled and been banded before. I truly know your concerns.

I had several worries going in about the mechanical valve and warfarin. Most were over thinking the whole ordeal and everything turned out fine. My first tissue valve was put in when I was 56 and the ON-X at 60. The recovery time from second surgery has been longer but I attribute that to aging probably. I really plan on this being my last as I have a lot of living to do! (have those kids and grands too)

Best of luck to you,keep asking questions here and your doctor(they are the experts) and do not stop until you know in your mind and heart what is best for you. Keep moving forward and keep your eye on the prize. Life really is good



I

 

[Duffey]

If you're 59, the surgeon should be fine with your choice of a tissue valve. You should get 15-20 years usage, and I'm confident a TAVR would be available in the event you then needed it replaced.