Catastrophic Hughes!!

[Mystynzl]

Hello everyone,

Well after being diagnosed less than a year ago my doctor has just told me I now have catastrophic Hughes. During xmas I had heamaturia. Seems there was a blood vessel in my kidney that was compromised. I lost lots of blood and had to be transfused and to have my warfarin reversed. I now have 12 mg warfarin and 2 clexane injections each day.

Prior to xmas i had an MRI and the results showed that i had been having mini strokes (that explained the head aches). So all I can say is "whats next". I have come to terms with the fact that i will never work again. I am just getting tired of not knowing what each day will bring.....my husband is an Angel and is so supportive......my doctor is awesome......So I guess i shouldn't be feeling sorry for myself. Anyone else have catastrophic hughes?

[MaryF Administrator]

Hello there, I don't have that type, however there are others on here who probably do fit into this catagory, keep posting and asking questions and the support will be there for you, I hope you feel much better soon and i am so glad you have such a good doctor. Mary F x

[lucky1]

G'day, I was a CAPS patient in the early days. What makes CAPS over APS - both throw blood clots that have the potential to do damage to any part of the body but with CAPS is is multiplied to several different parts of the body being affected at the same time.

In my case I had an arterial clot complicated with a bleed at the back of the head, post op to this and recovering in ICU I added a large DVT (ankle to knee) left leg, and a PE (pulmonary embolism) or clot on the lung.

With treatment, ie warfarin, maintaining an INR of 3.5 I have had no further major issues over 12 years. During this time the worst I have had are superficial haematomas.

I sign off with lucky1 for a reason, I not only survived the clots that should have killed me I am also back at work in a technical role (what I was doing pre stroke)

I work 4 days a week with wednesdays off is the only difference post stroke.

If interested you can read a story of my stroke at tbihome.org/members/peter/

Lucky1

[Mystynzl]

Thanks so much for the support,,,i would be lost without you all. I am praying for a lotto win so i can come to the UK and see the specialists there.....again thanks.......oh and as per usual Max my dog told me there was something wrong prior to me bleeding externally.....hes my guardian for sure

[paddyandlin]

Hi Mystynzi,

I am so glad you are ok for what you have gone through, we are all here if you need help or support let us know, we alos in the process of looking at starting up a chat room event soon and maybe one day we will all meet up.

paddy

[Hidden]

Whats next...well it is nice that what happened to one does not always happen to another. I was diagnosed with CAPS after having a heart attack and open heart surgery. Since being blind for 9 months following a stroke. I then had 4 more strokes over the next 3 years. I have had several teeth die. To much other to go into here. Hey but I am back working.

[Manofmendip]

Hi all

I've had clots in hip, bowel and haematuria all while running an INR of around 4.0, in accordance with Prof Hughes instructions, and also coronary by-pass surgery, which Prof said was most likely APS related; irritation of artery linings causing plaque build up.

Dave

[TheKid in reply to Manofmendip]

Have your doctors explained how it is possible for you to have such a high INR and still experience clotting incidents?

[Manofmendip]

No but I'm going to talk to Prof Hughes when I see him again on 15th February.

[Mystynzl]

I have had numerous blood clots while i was theraputic as far as my INR is concerned...............i guess that this condition really is an anomaly in its self. I go by the theory that every day above ground is a good day!

[paddyandlin in reply to Mystynzl]

very true, i think in the case of CAPS APS the body produces so many clots sometiomes the blood thinners just acnnot keep up and some will slip through the wafern levels going up and down.

glad to see you still posative

paddy

[DawnS]

Sguye you said your teeth die can you please tell me what you mean by that? Is it cavaties?