September 13th
2008
3:02 AM
About 8 weeks ago i was doing a really hard training session and had to pull out because of severe chest pain. i was taken to hospital where i was for 2 weeks and told i had multiple 'quite substantial' clots in both my lungs which had caused tissue death through lack of blood supply - pretty scary for a fit and healthy 18 year old. since then ive been having INR blood tests twice a week and been on Warfarin. they say i have to be on it for 6 months then they can test to see if its a genetic thing and if i'll have to be on it forever. im doing just as much exercise now as i was before it happened but i've put on about 5kgs. have other people been told they can't drink while on Warfarin? i asked my doc if he meant moderation or zero and he was like 'do you want to have a stroke?'
what 18 year old gets PE? it's such an old person thing, and seriously stuffed up my life, hopefully only for now.
July 3th
2008
7:30 AM
I am 24 years old and I had a pulmonary embolism last month. I was on the birth control YAZ for only 3 months, and that's what doctors seem to think caused it. My insurance only paid for me to be in the hospital for three daysand I was sent home with lovenox shots and Coumadin pills.
One month later, my INR is still unstable, fluctuating so much that they are checking it twice per week. My dosage is constantly changing. I have a red, painful rash on my buttocks - it hurts of sit for more than a few minutes. I am losing clumps of hair. I have lost my libido. I am very irritable and snap at my husband several times per day. I have a headache almost daily and frequent nausea.
I hate these side effects!
-- By sigmachideltachick | Reply | (7) replies | Private Message me
June 30th
2008
4:51 PM
I suffered a Pulmonary Embolism December of 2005. Following, I found out that I have Factor 5 (later we found out that all my siblings have it as well as my father). I have been on Warfarin since. I have been told by a few doctors that I will be on it for life. I have also been told by other doctors that I should have had filters put in my lungs so that I don't need the Warfarin anymore. Prolonged use of Warfarin is terrible for you, they say. At the time I started taking Warfarin, I was 39 years old. After 6 months of use I began to loose my hair as well as the curls diminished. I also developed discoloration on my upper lip, face and forehead. 8 months later I was told that I was pre-menopausal...my hormones were changing....night sweats, dizziness, nausea, severe abdominal pain, digestive problems, bowel problems, severe weight gain. They then told me that I had Vertigo and that they were not sure why it began. I am now suffering severe memory problems. When watching a movie, if a commercial comes on I forget what I am watching. I can't read without nausea and dizziness. I get headaches, terrible leg and arm pain. My concentration is very poor. I can't remember what happened the previous day or who my customers are. I don't know what to do. If I stop taking it I will run the risk of another horrible embolism (20% survival rate). My children, 12 and 15, have already lost their father to cancer. They are very concerned of loosing their mother.
-- By laslaman | Reply | (1) replies | Private Message me
June 8th
2008
10:33 PM
Last Christmas (07) I was diagnosed with pneumonia in the the right lung and x rays ordered. Xrays revealed an "unknown mass", or so they thought... they decided to redo - confirmed them and ordered CT scan... mass was gone, but there was PE in both lungs... so started the coumadin. I am type 2 diabetic as of Jan 07... have been managing my diabetes with healthy diet and regular exercise (A1C 7.4 to 5.4 in 9 months) ... no drugs... so the prospect of coumadin for life bothered me. However, my doctors all made a great case about how safe it is compared to other drugs... I lost 35 lbs in 07 after changing my lifestyle... and felt great. I am here today because I gained 20 lbs in 4 months of coumadin therapy (no change in how I was living), have aching muscles, chest pain and shortness of breath, and thinning hair.
After 2 days on the web I find only doctors and pharmacies say no side effects, but the hundreds of testimonials of actual coumadin guinee pigs like myself are finding a lot in common. For me, Im off it tonight.
-- By john25 | Reply | Private Message me
March 11th
2008
11:51 PM
I have been on Warfarin since the end of Aug. 2007 when I had my mitral valve replaced with a mechanical valve. I will be on it for the rest of my life. My doctor.'s all assured me there were no side effects other than the bleeding risks. I now know this is not true. The side effects I am dealing with make me sometimes wish I had chosen a tissue (pig) valve, even though I would be guaranteed another heart surgery within ten years. I am 39 years old and a mother of two young kids. Since being on Warfarin I have experienced various body aches that come on suddenly but don't stay long; extreme hot and cold; itchy hands and feet; dry hair and hair loss; seeing "spots" usually followed by a headache; very thirsty; ongoing bowel troubles, possibly developed colitis; but the worst side effect for me is the fatigue and depression. I feel like I traded in my old self for my mechanical valve. Like I said, I'd have to have a tissue valve replaced eventually, and as bad as heart surgery is, I'd rather have 10 happy years w/out Warfarin than this struggle I deal with almost everyday. My brother is a surgeon and even he buys into the "no side effects" b.s. I work out as much as I can, which used to make me feel great, now I feel like it helps me get by but not the positive effect it used to have on me mentally.
-- By hrg39 | Reply | (2) replies | Private Message me
October 10th
2008
8:53 PM
I am not sure what to think now. I too have a Protein C deficiency and developed one clot per lung in Dec 2006. I lost about 20 lbs after leaving the hospital because I was under nourished and had messed up my metabolism over the years, so the consistence food intake and water was a good thing.
Now...I feel sluggish some times, and I feel like my mid-section is gaining weight. I have never been a small person, but I could always count on certain parts of me to look a certain way.
I have also noticed some elevated blood pressure...I was usually 110 over 60 now 120 over 70-75
Are you guys saying that exercise is futile?
-- By juststeph | Reply | (2) replies | Private Message me