Sticky Blood-Hughes Syndrome Support
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UPDATE: Finally, maybe things will come together

I've been staying away, been too depressed with so much medically going on all the time. Today, I left my home at 8 am, I had two Drs. appts and didn't get home until 9 hours later. The 1st one was with my eye surgeon, i've had numerous tests and 2 more today. Initially this morning she wanted to schedule me for surgery on my left eye for March 16, to remove the advanced cataract and do a procedure for the intraoccular pressure. Then she did one more test as the vision in just 2 weeks has declined more. She found I have a "hole" which has to do with the retina. This hole is actually in both eyes, the left one is a little bigger than the right. Before the results from this test she wanted to schedule the surgery and I explained I wanted to talk to my Hematologist before scheduling because she, my eye surgeon said I didn't need to get off the coumadin and didn't need bridging, I wasn't comfortable with this. I then went to my new Hematologist/Oncologist this is a group of Yale Physicians. Dr. Harvey took 9 vials of blood, sat and went through all my diagnosis's with me and all the Drs and Hospital reports. I told her that I am very confused because of the numerous dx of different auto-immune, APS, Lupus, MS, Behcets syndrome and other illnesses such as cardiac, diabetes etc etc. She said until recently APS and Lupus was commonly found in pts together, and now they have seen more and more patients with all the same ones I have, she said kind of overlapping. She said she took the time last evening to go through all my history as she was told by my GP and my Pulmonologist that I was a very complicated case. She said, "there is absolutely no doubt in my mind that you have all these problems", and was concerned because of my "clotting both in veins and arteries, and then the other side... bleeding out", (which happened to me in December). She explained that she felt the safest drug especially for someone like me is coumadin as this one has a way to reverse the effects fast if need be. They are having a conference within 2 weeks on clotting disorders, primarily APS and asked if I wouldn't mind her bringing all my info and presenting the facts of all my documented illnesses to seek the best possible treatment plan. YALE MEDICAL.......I was shocked but very appreciative as now it seems someone is looking at me as a whole, not as all individual illnesses. She told me that I should never have any procedures without bridging as I have the tendency to either clot or bleed. I will be having my PT/INR weekly for the next 6 weeks as the levels have been all over the place. I will then see her again, unless she gets any constructive suggestions from the conference and at that time she will call me. I feel a little more at ease at everything I heard today from her. As far as the eye surgeon, I now have to wait to see the Retina Specialist.

5 Replies

Go give it to them!!! I know the traipsing around from doctor to doctor is very wearing, especially if everyone thinks you have something else not APS giving you crazy symptoms! Good luck with the conference-hope they learn something from you.


Sounds like you've struck gold with this doctor! Sorry for your long day but this might be a huge step forward for you. Let us know how it goes.


You are pulling together an awful lot here, well done on your patience and persistence, and great that the right doctor is in the driving seat. Best of luck, MaryF

1 like

Good stuff. Glad you are making progress, keep going!


Thanks Thomas, It was going a little better. Over the weekend I became extremely exhusted, very vague symptoms, when I do get up, heart racing, muscles in my legs very weak and tight..just some really strange things. Went to the Dr on Monday she ran all kinds of blood tests. So far a couple things have come back, and I tested highly positive for Epstein Barr Mono. I would love to know how I got this as supposedly its passed through saliva. Thats why they call it the "kissing disease". But thats me, always something strange or different.


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