Okay, I got out of the hospital recently. I found out that I have blood clots in my lungs. the doctors put me on coumadin which is a blood thinner. I also found out that I have Lupus Anti-coagulant which means that I have a higher chance of getting clots because it is genetic. Does anyone out there know anyone on this medacine? I'm still young and cant do things I used to, how do you cope? I know things can be worse, I just wanna talk to someone who knows a bit of what I'm going through.
Answer:
I know exactly what you are going thru. I'm 37 years old and I was diagnosed when I was 20. I got a blood clot in my leg and the doc did not understand why I had a clot in my leg. They asked if I had bumped my leg or did something to it and I told them no. Then after I got out of the hospital for my DVT, I was sent to a Rheumatologist. At this time, this is when I got the horrible news that I had Lupus and Antiphosphilipid Syndrome which is the blood clotting disorder. I was devasted but fortunatly I had minor flare ups in my joints. Then I got pregnant with my first child at age 26 and I felt so good while I was pregnant. They had me take two shots daily of Heprin (blood thinner) in my stomach during the whole pregnancy. I was able to breastfeed after my pregnancy also. So all was good and then I got prego again in 98 and had my second child. Wow, what a miracle! The docs did not expect me to carry either baby to 40 weeks but I did and worked full time also. After my second baby though, I started to slow down and the Lupus was really hurting me more and more and making me soooooo tired. I struggled until the year 2000 when I had my first full body flareup where I could not even move my body and had to be put in the hospital. After that it has been rough since then. I worked full time untill 2005 when I had a subdural hematoma in my brain because of the blood thinners. Don't get me wrong, all this sounds scarey but you have to look around you and see that things happen all the time to people. People are diagnosed with something everyday and no one, No One in this world is guaranteed tomorrow. Just cause you have a disease does not mean you will die tomorrow or the next day. Some people don't even have a problem and get in a car wreck and die that day. Nobody knows what will happen in the future but to me, GOD has it all written out already and there is nothing that any of us can do about it. I do get depressed, scared where I can't sleep at night just looking at my kids wondering how they would do without me. It's just a strength that you really have to find deep inside you to help you thru those bad days. Like right now, I'm up at 12:07 at night and can't sleep because I going thru one of those depression things where you feel so scared and so out of control because you feel like you have no control of this stupid disease and it is so scarey. But you have to talk to yourself or someone to help calm your nerves down. I'm real scared, real scared about what news I'm going to hear next or where its attacking me next. But, the more I worry, the worst it hurts me because stress will trigger a flare so I try things to help calm my nerves. My friend introduced me to smoke some MJ to help calm my nerves and it does plus its supposed to be a immunsuppressive drug to slow down the antibodies.
I have found that cutting out beef helps reduce my flare-up and helps my stomach also. Do you know what your sed rate is? I hope this helps and if you need to talk at all, please do not hesitate to contact me. I truely understand.
Nettie
I'm so sorry, dear. This is a lot to take in, I'm sure. I will be posting some sites to help. Some are informational, some are chat boards for patients like yourself. Hang in there and best wishes to you. http://www.lupus.org/newsite/index.html... http://dailystrength.org/support/muscles...
check under the search engine about how to deal with it. i do not know what u are going thru but i wil be ur friend thru this dogmicjoe@yahoo.com.
I am so sorry to hear about that, It does sound like you may have SLE (Lupus), pending some other blood test, and the meeting of some other critera, if they have not already done that. comadin, is a blood thinner, which can help thin present clots and help prevent new ones from forming. Lupus is an autoimmune disease which can attack any part of your body. I have it, and it has hit many areas of my body. It can run from mild to severe. There are periods of flares and remmissons, right now you are having a huge flare. In todays modern medicine world, there are so many ways to keep us alive, and barring the worst of flares keep us with a decent quality of life. In fact I had a bad flare and just got of IV Chemo, and Im doing ok, Ive had Lupus about 20 years, my journey was longer, getting a diagnosis in my situation and with my issues was much more difficult then then it would be now. The best think, and I hope you have it is family and friends who will be there for you. Outside support, online, face to face support groups, whatever you like better. I own an online group, and for many memeber it helps, the get to talk, gain information, vent, and even laugh. Here is some info from web md on the drugs basics:
This medication is used to treat blood clots and/or to prevent new clots from forming in your body. Preventing harmful blood clots helps to reduce the risk of a stroke or heart attack. Conditions that increase your risk of developing blood clots include a certain type of irregular heart rhythm (atrial fibrillation), heart valve replacement, and recent heart attack.Warfarin is commonly called a "blood thinner," but its more correct term is anticoagulant. It helps to keep blood flowing smoothly in your body by decreasing the amount of certain substances (clotting proteins) in your blood.here is the 11 diagnostic critera for lupus from Yahoo health
Diagnostic criteria for lupus
The following criteria are used to distinguish lupus (systemic lupus erythematosus, or SLE) from other autoimmune and rheumatic diseases. A person with 4 of these 11 conditions can be diagnosed with lupus; 3 symptoms suggest that lupus is probably present, and 2 raise the possibility of lupus. Symptoms may be present all at once or appear in succession over a period of time. 1 Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal ulcers, usually painless
Joint swelling, stiffness, pain involving two or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis). This inflammation is called serositis.
Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts, in the urine
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Positive antinuclear antibody (ANA) test
Signs of increased autoimmunity (antibodies against normal tissue), as shown by laboratory tests Good luck, and Im sorry this happened to you
Chris, Lupus paitent and suvivor
Hi,
I am so sorry. Many, many people take Coumadin. Did the doctor suggest using a procedure to capture the clots by going through a vein or not? Sometimes they can do that if they are in a reachable location. Just be still. Don't move a lot or get over active right now until the clots break up. This is a very serious problem. You need prayer. Do you have a church family to call to come support you? Find one in your area. Make a call or ask someone you know. You need people to love you and support you with prayer right now. You need God to heal you.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment