Has anyone seen the site online regarding APS and there are all types off information given by doctors etc.

[Teanna]

I came across this site which covered APS and the top doctors that was involved with this site. One of the topics that was discussed was the use of blood thinners (only 2 of them was mentioned), Heprin and Wafarin. NO riveroxoban, no Fragmin, and what scared me the most was the fact that the Doctors that are involved was one of my doctors. Now this site was being made into a leaflet for other doctors and other people in the health departments to be more aware of APS. It also mentions a list of the do's and the dont's, diets, exercising, (tha-chi, swimming), that's if you are able. Brain fog was another topic, what you can do to make you remember things etc.

Now I don't know if anyone has seen this, but why have they left out Riveroxoban etc. I was told by an unnamed source, (that's why I'm not going to put my life on this information because it could be wrong), but it's because of cut backs. Firstly you don't have as many appointments to the clinic for INR testing, you don't see the Haematologist as much, and so on. Now riveroxoban are for people with their INR are between 2-3 and stable. Mine was from 3.8 up to 4.2, (I think I've said this before), but I had a DVT and my INR was 4.2 and the clot was under my knee.

This has really scared me, although there was some good points on the site. ( The 18th June is APS awareness day).

Has anyone else seen this site?

[Teanna]

Hi,

Thank you, I shall send you the site. My own doctor who is good friends with Prof Hughes is named as one which I doubt she would have different opinions etc.

Thank you again,

(My hand has still not been sorted out, 18mths now and seen 6 different doctors).

Kind regards

Teanna

[Wittycjt in reply to Teanna]

I PMd you

[blizzard2014 in reply to Teanna]

I'm so glad we have Dr. Hughes. I had a 12 hour surgery on my face when I was 15 years old back in 1988. I always wonder if I would have had a DVT provoked by the surgery, what would have happened to me since APS was barely on the medical fields radar back than. It scares me to think that some of you guys have had this disease before it was even detected by Dr. Hughes. Those of us who have been recently diagnosed have a much better network of doctor's and information to help us live with this condition. It's all due to the man himself. Dr. Hughes has made life better for so many of us.

[Wittycjt in reply to Teanna]

I would like to know who you are talking about please respond to my PM, tyia, Cindy

[blizzard2014]

My hematologist actually discharged me because she mostly deals with cancer patients. She told me to see her again if I have another blood clot. She also said for me not to switch to the newer blood thinners since I have been clot free on Warfarin for 6 years. From what she see's; some patients clot up on Warfarin but do better on the newer blood thinners, while others clot up on the new thinners and do better on Warfarin. My Hematologist was smart enough to run testing for APS, and she does understand that it is a much more serious clotting disorder than some of the other ones out there, but she is not as up to date on the disease as she should be. I have been pretty stable on Warfarin for quite some time now. I've only been getting my INR done about every 2 months. I know this is bad, but my INR is ranging between 4.0 and 4.5. Doc wants me to lower it, but I am just going to leave it a little bit high because I feel better and I feel safer with it at a higher level. I don't want to play yoyo INR for a while, but I will probably tweak it again once I get some more test strips for my home tester. I pay cash for my own strips and haven't been able to afford new ones since last year.

I'm thinking about going back to school to become a medical administrator. My promise to you all is that if I get my MBA in medical administration, I'm going to educate as many hospital and medical centers as I can about APS and screening for blood clots. And that it's not just blood clots. APS is a systemic disease that causes a bunch of other symptoms that are not just DVT/PE's and mini-strokes. You have to listen to the patients. Sometimes doctor's do not listen to the patients. It's kind of funny how a business person with a Masters degree will have more power than the Doctor's lol. We all need to become medical administrators and whip these doctors in line. lol

[Lure2 in reply to blizzard2014]

So you have got a hometester. That is good.

It is ok I think to do doubletest at the hospital lab if you know for sure that the difference is the same between the INR in the vein and in the finger. We on positive LA have difficulties with huge differences between the two which can make if difficult to rely on the INR result.

Best wishes from Kerstin

[Lure2 in reply to Lure2]

I meant to say that you do not have to do it so often if you know that the difference is the same.

Kerstin

[Teanna]

Hi,

I brought the machine but got the strips free from either my GP or the Anticoag clinic, but now I'm on Riveroxoban I no longer use it. I wished I knew before otherwise I would not had brought a flimsy plastic machine that was really expensive. Mind you, I would rather know what my INR is than just hoping that my blood is fine.

Good luck with your degree

Kind regards

Teanna

[MaryF Administrator]

Well said as usual Hidden could not have put it better myself. MaryF

[Teanna]

Hi all,

It’s strange that in the 5yrs we have so much more info about APS, that I’m still learning and I’ve had APS for around 26yrs +.

No-one told me about diets etc, Im still trying to find out about different foods etc, even the dietician did not know which foods to stay away from or eat in immoderation. I told her about the foods that I did know about, plus I have many food allergies yet I’ve never saw her after my first appointment. I’ve had to teach myself as much as I can, but it don’t help being wheelchair bound.

Hope everyone is enjoying the sun, and like myself, (Cover the legs up)!!!!

Regards

Teanna