HOPING FOE GOOD NEWS -SORT OF...

[ZRHONDA]

I refentlyvsuffered v a brain bleed due to falling and hitting my head on the cement. I was taken to the local trauma center and immediately admitted. (I had just been released from the hospital two days before for pulmonary edema and congestive heart failure anong with double pneumonia at that time the hospitalist agreed that I needed to he worked up for APS. He suggested I follow up with my hemotologist and gave me a referral. Since I've b een suffering with agoraphobia for the last 7 years or so I'm not very good at following up with my docs. Consequently I haven't seen my hemotologist since 2010 when I had a stroke and he diagnosed me with Factor 5 Lieden thrombophelia and Lupus anticoagulation. So now, atte4 v ky brain bleed they took me off all blood scompletely. I know it was necessary but they want the hemotologist to determine when it's safe to go back on warfarin. Since I haven't seen them since 2010 they are now considering me as a new patient and it's taking longer to get an appointment. I'm very anxious being off Warfarin and especially if it turns out I do have APS. before I started warfarin I had 2 to 3 migraines a week. It was awful. And totally debilitating. Later night and most of today I have had a monster of a migraine. They finally called me today to set up an appointment but my phone gad died and I missed the call. After seeing the voicemail, I felt a little less anxious. But I'm still having a headache. The advice I'm looking for is; is it safe to v wait until I can get into see the heme? or should I just go get my head checked out since my pain meds are not even touching the pain?

[daisyd]

I would if it were me get someone to take you to A&E hope you feel better soon

[MaryF Administrator]

If it were me I would be seeking to sort this out immediately as you clearly need to be bac on some sort of anticoagulation, as your Hughes Syndrome/APS will not have gone away. Please do be firm about your past history and let us know how it goes. MaryF

[Lure2]

Could you phone your Hematologist who diagnosed you with Lupus Anticoagulant and Factor V Leiden in 2010 when you also had your stroke.

You need urgent help to get onto some sort of anticoagulation and explain your situation to someone who understands what APS is about - too thick blood!

It must be difficult to have Agorafobi and APS together.

Please let us hear how it goes for you!

Good Luck from Kerstin in Stockholm

[ZRHONDA]

Thank you for your kind replies. The trauma center I was at was very knowledgeable about APS. I know I should just go now but it's the middle of the night. Perhaps I'll call the nurse's holiness and see what they say. My original stroke was ischemic, and I've recovered fairly well. But a hemmoragic stroke is a totally different story. I'm frightened.

[ZRHONDA in reply to ZRHONDA]

*hotline

[MaryF Administrator in reply to ZRHONDA]

Please do go and seek medical care asap please. MaryF

[Lure2]

Good that the traumacenter knew what APS was. You have had newly contact with hospital for pulmonary edema and heart failure and they know what you have been through.

Did I understand it right that you got a referral to your old Hematologist who knows APS? That is good I believe.

Stay in direct contact with the hospital or A & E as you may need urgent help from someone who knows about APS and coagulation-issues. Let us hear how it goes for you!

Kerstin

[ZRHONDA]

UPDATE ON BRAIN BLEED

I had my appointment today with my hemotologist and he started me back on 5mg Warfarin and one daily injection of Lovenox for 5 days. Then I will have my PT/INR done on day five. I asked him to please test me for APS. He said I definitely have APS. I guess I didn't know what to look for on the labs but since I've had a DVT in my leg and an arterial clot in my carotid (100% blockage) there is no doubt that I have it and he said all of my original test results confirm it. He said that the migraines disappearing after starting on warfarin was classic APS. Since most of my symptoms were basically gone with just the warfarin we would just stick to that unless my headaches continue which is common with a brain bleed and concussion for it to take up to six weeks to feel better, if it doesn't resolve after six weeks we will add aspirin. I asked if any of the many doctors in their group specialized in APS he said they all pretty much did. He said they were all knowledgeable about current studies and treatments. I want to share their information. They are located in Orange County California in the City of Orange. It's called the Hematology-Oncology Medical Group of Orange County, Inc. They have 25 partners. I saw Dr. Timothy E. Byun. Their telephone number is 714-835-1800. Their Address is 1010 wm LA Veta Avenue. Suite 200, Orange CA 92868. Dr. JAMES PADOVA is the head doctor in the Group. Anyway. That's my update. I wrote one earlier but I lost it somehow. If I double posted I apologize.

Thanks for your unending support and amazing knowledge of this disease. I also have Lupus SLE and Factor 5 Lieden thrombophelia.

[Lure2]

I feel so happy for you!

Wish severel others in the US could see those doctors. Well done!

Kerstin