Blood Transfusion and Hughes Syndrome

[Salmonious]

I just found your site and I am hoping that I can find my answer here. I have a rare blood type (can't remember which) I believe I can take anyone's blood which may not have anything to do with my problem. I had major surgery 4 years ago that went poorly. I bled out and spent 22 days in hospital 10 of those in ICU. While I was in ICU I was given several blood transfusions with no issues however while going in recently for some other surgery I was told that my blood had changed over the past 4 years with a diagnosis of Hughes Syndrome. I was told this is very unusual because people's blood doesn't just change. I was wondering if it is possible to get this syndrome through a blood transfusion?

[Ozchick]

Were you actually tested for Hughes before you had the transfusion?

[Tucson in reply to Ozchick]

We all develop Aps at some point and there are many triggers, I was problem free and untested until after my second stroke at 58 so who knows when it first put in an appearance. We believe it was triggered by Hrt when I was 51 but as I was never tested I can't know for sure.

[Ozchick in reply to Tucson]

"We all develop Aps at some point and there are many triggers"

I'm not sure where you're getting your information from but it's not strictly accurate. There are so may Doctors out there who haven't got a clue-and you really need to be on some blood thinners if you have had a positive diagnosis. There is very good info on this site as well as very knowledgeable Admins and a doctor who understands APS is vital.

[Tucson in reply to Ozchick]

What are you talking about? It's true there are many triggers and no one knows if they have Aps until tested.

The rest of your post although quoting me has no relevance to me.

[Lure2 in reply to Tucson]

Hi Tucson!

Could you please explain to me what "Hrt" is?

Kerstin in Stockholm

[Tucson in reply to Lure2]

Hrt - Hormone replacement therapy

[Lure2]

Hi and welcome to our friendly site,

Hughes syndrome makes your blood thick. It is very common it will happen with a trauma of some kind. At an operation like you had perhaps, but as far as I know you can not get it via a transmitted infection like a bloodtranfusion.

We need anticoagulation drugs to keep our blood thinner!

These autoantibodies are sort of "sleeping" inside your body and attacks suddenly (blood gets thick and you can get a clot). For some of us the autoantibodies remain with high titres and for some of us they disappear for a while and will return later. I am sure that you can not get this illness from another person (like with a bloodtranfusion) but Hughes Syndrome can run in families we know that now.

Talk to the Doctor who told you about Hughes Syndrome and ask for copies of the bloodtests. To get a diagnose you need to take two bloodtests with 12 weeks apart. This is a very rare illness that very few Doctors understand and know about, that is why you have to talk to a Specialist of autoimmun illnesses. Hughes Syndrome is treatable.

If you have got Hughes Syndrome you are at the right place now so please stay with us!

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

Hi, people develop this disease for many different reasons, you may have had it already but not have been tested earlier on. MaryF

[Salmonious]

Thank you all for your quick responses. I see a hematologist right now and have had several tests to verify Hughes Syndrome however in his letter to my GP he says he will probably do nothing right now but wants to investigate further why certain factors are there. The way I found out about the condition I arrived in the operating room (knee replacement) and was laying on the table ready to start. I am hooked up to IV and just as they are about to administer the anesthesiology they said "Oh we need to let you know something. We found out that your blood has changed about 4 years ago and it could mean that you will bleed a lot or form clots. We cancel the surgery now to investigate further or you can carry on and take a chance." I just stared at them in surprise and said I can't keep doing this and I am already on the table so just do it. Shortly after that surgery I went in for another for large hernias in my abdomen, it turned out to be major surgery. I developed 2 very large hematomas in my stomach which surprised the doctor. He said "very strange that you would get this when the draining tube was clean the whole time" That is when I was told I had to see a specialist and I have been dealing with it since. To tell you the truth it kind of scares me to think that I have already had 2 incidents of clotting and constantly wonder if I could stroke out at any time.