Sticky Blood-Hughes Syndrome Support
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In Colorado, what is everyone else doing about losing Jill Schofield as a provider? I'm devastated and lost.

I received a letter she was taking time off from practice and I don't see anyone at her practice as a replacement.

Thanks

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Do you have dysautonomia with your APS diagnosis? If so, Brent Goodman ( neuro in Scottsdale, AZ. Mayo Clinic . ) I saw him pre APS diagnosis for dysautonomia. He was fair.

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I do have dysautonomia. Though traveling out of CO isn't an option for me. Thanks anyway.

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I think he was ,” meh.” In all fairness to him I hadn’t,” blossomed” with APS so strongly and my tilt table test was negative at that time.

Hopefully someone else can advise you.

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I also saw her. I was in the process of getting my medication straighten out because I am so allergic. I have so many problems from this damn disease. Professor Hughes retired & now her. I

have a appointment with Patrick Gordon at the Lupus Center but nobody seems to know anything about him. I feel so lost.

Designer16

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I may have told you this once, can’t rennet... ( surprise, surprise...) but I also travel to the London Lupus. Enter on behest of my Texas team at the very onset of my diagnosis in nov 2016. I was some of their first “ difficult and complex “ patient. I saw Natasha Jordan and Prof Hughes was kind enough to sit in on my consult with her and co consult.

I also was advised by Prof Jordan to follow through with Jill Schofield as my APS specialty Rheum . I did have an appointment with her scheduled in April but it was cancelled.

I have dysautonomia as well, so it is my guess she was going to begin IVIG infusions with me. I do have early and mild pots, but I feel I am for all purposes asymptomatic with it. It’s the brain/ gut issue that’s my issue. ( gastro paresis.)

That becomes a little difficult to unravel as well because it is entangled with clotting/ innervataion issues if the INR dips- vasoconsgestion.

Dr. Brent Goodman at Scottsdale mayo ( nuro) is good for this and Jill works with him is this is your combo issue.

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Sorry you didn't get in to see her. London is a really long way to go!

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Yes, well I would rather her work out a sustainable model for the long haul than limp on a broken model for the short. It will benefit all in the end. I know we all feel the same. Here’s hoping she can.

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This must be very upsetting for you. Having a reliable Dr or Drs who you know have your back with this disease is more than half the battle.

My advice to you would be (if you don’t want to travel) is find someone locally who you can get a good rapport with and try and educate them with the help of all the papers and blogs of the ghic.world website and any further advice we can provide. Sometimes getting the relationship right is better than an arrogant know all who won’t listen to you.

Good Luck!

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Dr S was a miracle worker for me. I hope she’s okay, not having health issues or anything like that.

I will go back to my hemotologist, Dr Kathryn Hassel at Anschutz in Aurora CO, who Dr S trained with for 2 years and who I saw for years for the APS etc. Also Dr S recommended that I could see Dr Birlea.

Then I’ll keep hoping she sets up a practice here in the area.

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Did you receive the letter, Tofino?

I hope she is OK, too, but I'm sure she has a good reason for taking time off.

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I was thinking about going back to see Dr Hassell as well. I have been in a bit of a crisis after sinus surgery, having a severe nosebleed. I was at University Hospital for 3 days after they packed my nose - a traumatizing experience if you haven't been through it. My nose is still having issues and I really wanted to talk to Jill about anticoagulation and this situation. Dr Hassell is out of the country right now too. The ENTs only know what they know. It was funny, the dr who saw me in the ER commented on my sticky blood. I educated him on APS being sticky blood. Who is Dr Birlea?

Thanks!

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Dr Birlea, Dr S, and another doc are working on getting funding to look at the zoster-APS connection. When she tested my zoster virus levels they were the highest she'd seen, and said there is a strong relationship and clear links between zoster/shingles and APS. An anti-viral may help with headaches, which are an issue for me. I'm unable to tolerate plaquenil. He is a neurologist specializing in head pain at UC Health in Aurora CO.

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Ok. Thank you for the details. And yes hellacious experience describes nose packing quite well. I hope your headaches get worked out. I struggle with those as well. They'e so hard to manage.

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I feel for you and I hope that as the hours pass you feel better. I've struggled with severe nosebleeds and had my nose packed once. It was a hellacious experience.

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Hi AnnNY, I had an appointment on the 23rd, which the office called to cancel, then I got the letter. It wasn’t a surprise because of all the chatter on the web sites. Her level of care and compassion for her patients is amazing.

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I worried she might burn out given her level of dedication and how much time she spends with her patients. Such a huge loss. I do hope she is ok.

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Well, I don't know what I'm going to do, but I have been having trouble getting CO, anyway. I'm afraid of going to another doctor that wants to rediagnose me and/or take me off anticoagulants.

What website are you talking about?

I hope you get good help from the other two doctors.

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The Facebook page - Dr Schofield’s Patients; and I think it was mentioned here too.

Thanks. Do you know what you’ll do?

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Just don't know. I have will see my PCP/GP in a few weeks. He is sympathetic to APS. Maybe will have ideas.

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I do hope you find somebody asap, let us know, I see Lynn has tagged our charity website, I hope that may be of some use to you. MaryF

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I am happy that you are going to London. I go May 22 to see Prof Patrick Gordon. I definitely will miss Prof Hughes. If you don’t mind me asking what type of drug are they using for your infusion & what is it suppose to do? Designer16

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I cannot believe Prof Hughes is retiring. Losing two amazing drs at the same time.

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I was in London last year and will be back there the same week you are actually. I see Natasha Jordan the 25th.

April would have been my first appointment with her, so I’m not sure what she would have advised. My INR was set by Professor Hughes at 4.0 “ preferably” and “ see how you go “ but I continue with clotting and a very unstable INR- I’m up to an average of 18mg warfarin noer day. We’ve brought on aspirin in very small quantities. Plaquinil - but I’m having a hard time tolerating.

I do have seizures, vision loss due to clots to optic and retinal nerves, as well as repeated large DVT’s so I’m having quite a time of it.

I’m very lucky and extremely grateful I have not had a stroke. I’m aware this could be much worse.

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Yes, I'm absolutely devastated, as well. I had seen her twice and we hadn't gotten my med regimen down yet. (I have APS, POTS, MCAS). I hope those of us who lost her will find others who can help at least somewhat. (I also have some insurance issues from the 27 vials of blood she took. My insurance is now saying it won't pay and it's $7,000, which I don't have!!)

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Oh no!! There should be documentation in your chart from her indicating WHY she took so much blood. Make sure you appeal their decision and see if someone at her office can be of some help. Maybe they can contact her to help out with that as well. Together, maybe we can help one another find the right providers to help out.

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