New To Community

[patriotic78]

It was a pleasant surprise to accidentally discover this site in my search for an answer about a certain kind of head pain. I had blood clots in both lungs March 2011. I have been on Coumadin ever since. Since I had no normal reasons for the clots, I was tested for APS and diagnosed with APS several months later. I see no specialists for this condition. I am under care of a cardiologist for AFIB and have taken Rythmol for several years. I have been getting my INR checked once a month until recently. First my blood was way too thin a month ago and now it is too thick. My dosage of coumadin has changed twice. I do have difficulty watching my diet with the foods that affect the test results. The diagnosis of APS had been put to the back of my mind until tonight. Any doctors that I see don't appear to know anything about it. I am a 78 year old female

Thanks for you time.

Patriotic78

[Ozchick]

Welcome to this informative forum. Not unusual that most 'normal' doctors don't know much about APS. Whereabouts are you? I'm sure that some of our lovely Admin will point you in the right direction for an APS specialist. Sounds like when your blood is too thick you are getting headaches?

[patriotic78 in reply to Ozchick]

Thanks for your kind reply. We moved from central WV (USA) to the Eastern Panhandle of West Virginia July 2012, in order to be closer our 3 adult children. That move (5 hours) was a challenge at our ages, but has been a real blessing to see family frequently and have their help.

I have been having some sharp like head pain in upper top of right side past few days, that comes and goes. I am not sure what that is all about.

I normally never have headaches much unless my blood pressure is high.

It has been running pretty normal past days. I look forward to using this forum.

Patriotic78

[patriotic78 in reply to Ozchick]

patriotic78

Thanks for your kind reply. We moved from central WV (USA) to the Eastern Panhandle of West Virginia July 2012, in order to be closer our 3 adult children. That move (5 hours) was a challenge at our ages, but has been a real blessing to see family frequently and have their help.

I have been having some sharp like head pain in upper top of right side past few days, that comes and goes. I am not sure what that is all about.

I normally never have headaches much unless my blood pressure is high.

It has been running pretty normal past days. I look forward to using this forum.

Patriotic78

[MaryF Administrator]

Hi there, well done for finding your way here. There are some useful contacts on here: apsaction.com/ MaryF

[patriotic78 in reply to MaryF]

I am sure those contacts will be useful. I love to do research when I get time and have always liked forums. One can learn so much from them,

and receive encouragement also. I did a lot of research back in2011 after and while I was recuperating from pulmonary embolism and after the APS diagnosis. For the past year I have been receiving treatment for chronic corneal erosion in one eye and lattice degeneration in both eyes( tiny holes in the retina). I wear a "contact bandage" constantly for the erosion and return to eye doctor monthly for him to change it. Sometimes the trips are more frequent for special pain and problems. My 85 year old husband is legally blind and gets frequent care at VA Medical Hospital for eyes and other. We both do a lot of running to doctors, especially the VA. We are blessed to live so close to VA hospital. It is a real blessing to have my only daughter take me to my eye appointments and cardiologist appts.

With all of the eye problems I have gotten more careless about getting my INR checked and watching my diet closer for the problem foods.

Thank you for you reply.

[Lure2]

Hi Patriotic 78,

I do not know where you live. You should have a Specialist of this illness. I am 72 in June and live in Stockholm and I selftest and have a therapeutic INR of 3.2 - 3.8. I have all the three antibodies for APS and I have difficulties to keep the INR stable unless I selftest. I have been on Warfarin since 2012 and selftested since 2013.

Try to find an Expert which you need and also try to selftest in order to keep within the therapeutic range. Mary does not know where you live but has given you some suggestions.

Have you read "Sticky Blood Explained" by Kay Thackray? She has APS and writes about the different symptoms. I have it in Pocket. It is a very good book to understand how it is to live with this illness.

Best wishes to you from Kerstin in Stockholm

[patriotic78 in reply to Lure2]

I appreciate your suggestions. I need to look into doing self testing.

I live in The Eastern Panhandle of WV(Ranson, WV), USA). It is a small city, but close to other bigger cities with more doctors and medical centers.

No, I have not read that book on Sticky Blood, but it sounds like it would be useful. I will look into finding that. My time is rather limited, with caring for my husband, with very limited vision in one eye only, and on a walker, plus my own health care, and normal household duties. I am very blessed to still be able to drive (daytime), so it takes some of "the load" off of our children. Plus we all like to be as independent as possible and as long as possible.

Thanks for your reply. Wishing you the best in everything!

Patriotic78

[shardavis3 in reply to patriotic78]

The books that this site recommends are available on Amazon.com. I downloaded the books from Dr. Hughes on line version so I can read anytime as I always carry my smart phone. Knowledge is powerful.

[patriotic78]

Thanks! I am anxious to read more about topic and Amazon should have a good price. Yes, I agree that knowledge is powerful. I certainly believe in becoming informed on any and all health problems and conditions that I, my family, or friends may have. In today's busy world of medicine one can't depend too much on a doctor. Many are over worked and over scheduled. We certainly

need to be able to have as much information and input in our medical care as possible or as much as we are willing to do.

Thanks again! Patriotic78