does anyone else out there have it? please share your feelings about it. any vlauable information to share? just curious because considering that i have it, i don't think that i know too much!
i was diagnosed with it about 6 years ago. i was sad about it at first but was happy about being forced to live a healthier life!
2007-03-04 03:37:47 · 2 answers · asked by Anonymous in Health ➔ Other - Health
Hey Tmoney,
I have had it for going on three years now, after having suffered a massive PE in 2004 at the age of 22, and suffered a second only three months later.
I am on Coumadin for life at a high dose.
You should also consider asking to be put on Coumadin if you're not on it already.
Some things really quick about Coumadin:
You need to wear a Medic Alert bracelet stating that you are on this drug and why. See www.medicalert.org They have 24 hour on call assistance if you're every injured.
You need to have your INR tested WEEKLY, and don't let anyone tell you otherwise. My INR levels have gone from a 1.5 to a 5.5 in a matter of days.
Be careful of the greens you eat, as they are a natural blood clotter. The most important thing is to be consistent. If you are a leafy green lover (as I am!) and you want to eat 3-4 servings a day, then you need to eat 3-4 servings EVERYDAY, so that it stays consistent.
Be careful of the meds you take, and ALWAYS ask a doctor or pharmacist before you take a new medicine, because they may interact with the warfarin. Meds you cannot take are: Advil, Ibproufin, Motrin, Excedrin, Aspirin, Alieve, Naproxen, and any other NSAD. Tylenolol is safe.
Take your Coumadin the same time every day, and mark on your calendar your doses so you don't forget.
I have decided to test from home now with my own INR machine, and I simply call my results in to my doc. Check out www.hemosense.com and see if your insurance will pay for one.
You cannot do any kind of activities that may result in an injury such as sled riding, racing, football, ect. as these may cause internal bleeding, and could be potentially fatal.
Pay attention always to signs of clots. Keep a symptom journal, and never be afraid of going to the doctor or ER if you suspect a clot. With very little warning, a clot can take your life.
OK, back to APS! :)
APS is an autoimmune disease primarily known for causing blood clots to form in veins and arteries, that can be fatal. It also causes certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood.
No one knows why we get it, and it affects only about 2% of the population.
It stinks!
Know too, that APS doesn't just cause clots. It also causes fatigue, arthritic symptoms, vertigo, memory loss, mental confusion, low platelet count, and many other symptoms.
My APS eventually got so severe that I had to quit my job. I still have to work of forgiving my body for being sick. I am so tired anymore, that I can't do the things I did even a few years ago. I had to accept my "new normal". You will have to accept her "new normal" too.
You really should wear a Medic Alert bracelet . If you are in an accident, not only could you bleed excessively, she could also clot. I strongly suggest www.medicalert.org to purchase a bracelet. They are big enough for medics to see, and they are pretty. Best of all, they give 24 hour on-call protection.
It is a very frightening disease, and you will also need a close support system. Many APS patients see a psychologist or clergy member to talk to. It can be a progressive disease. It is for me, at least. When I got the PE back in 2004, I was put on 5mg daily of Coumadin, a blood thinner. Today, I'm at a whopping 10.5mg. Even on this high dose, I still managed to get a clot in my arm last spring.
Consider joing the online support group I belong to. Check out www.apsfa.org for all sorts of articles that deal with APS. There is also an online support group where you can talk to others who are going through what you are experiencing. And you can always feel free to email me. I know how lonely and scary it can be.
God Bless,
Christina
Hey, I just found this, and thought you might be interested...
It'f from www.apsfa.org
Antiphospholipid Antibody Syndrome (APS) is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. There are two known forms of APS. APS may occur in people with systemic lupus erythematosus, other autoimmune disease, or in otherwise healthy individuals. Sadly, when most people hear about APS and it being referred to as autoimmune disease, they incorrectly confuse the terms autoimmune with acquired immune deficiency syndrome (AIDS); or they think this is a form of cancer.
2007-03-04 08:11:29 · answer #1 · answered by Chris 3 · 1⤊ 1⤋
what's the antiphospholipid syndrome? The antiphospholipid syndrome is a ailment of the immune device it extremely is characterised by potential of severe clotting of blood and/or specific problems of being pregnant (untimely miscarriages, unexplained fetal demise, or untimely beginning) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) interior the blood. sufferers with antiphospholipid syndrome have stepped forward unusual indicators on an analogous time as having antiphospholipid antibodies that are detectable with blood attempting out. Antiphospholipid syndrome is likewise stated as the phospholipid antibody syndrome. Antiphospholipid syndrome has been stated as Hughes syndrome in honor of the healthcare expert who first defined it. it somewhat is significant be conscious that antiphospholipid antibodies is often stumbled on interior the blood of persons with out any ailment technique. in fact, antiphospholipid antibodies have been stated in approximately 2 p.c. of the traditional inhabitants. innocuous antiphospholipid antibodies could nicely be detected interior the blood for a short era often times in association with a great style of situations, jointly with bacterial, viral (hepatitis, HIV), and parasite (malaria) infections. specific drugs could reason antiphospholipid antibodies to be produced interior the blood, jointly with antibiotics, cocaine, hydralazine, procainamide, and quinine. in spite of the actuality that, the antiphospholipid antibody (a protein) isn't seen a classic blood protein and has been present day in sufferers to be linked with various illnesses. those illnesses incorporate unusual clotting (thrombosis) of arteries (stroke, infarction) and/or veins (phlebitis), untimely miscarriages (spontaneous abortions), abnormally low blood platelet counts (thrombocytopenia), purplish mottling discoloration of the exterior (livedo reticularis), migraine problems, and a uncommon style of inflammation of the frightened tissue of the suggestions or spinal twine, stated as transverse myelitis. Antiphospholipid antibodies have additionally been detected in over a million/2 of sufferers with the immune ailment systemic lupus erythematosus. Researchers are at present additionally looking that there are sufferers with slowly creative memory issues and sufferers with a sort of "unusual distinctive sclerosis" and antiphospholipid antibodies detectable of their blood. you're able to be able to desire to get a blood try. See a doctor to be attentive to for specific.
2016-10-17 06:05:44 · answer #2 · answered by corbo 4 · 0⤊ 0⤋