Introduce yourself here

Hello. I have been a sparker for over a year but am new to this team. Although I have an inherited clotting disorder, prothrombin G20210A mutation, I have no problems. However, my mother and grandmother both died of clots after surgery (grandmother at 99 and mother at 87) and my youngest daughter who is 46 has had clotting problems since she was 16 and on coumaden/heparin/lovenox since she was in her mid-20s, Her daughter also has tested positive for it as well as have several cousins. I did have multiple miscarriages and huge clots during menstruation.

All of this, however, is not why I joined this team. My husband recently had several small strokes. The source was finally located as a small clot in the upper right chamber of his heart. Apparently he has episodes of atrial fibrillation which in a few people cause clotting. He is on coumaden for the rest of his life. Because of our daughter we have extensive experience with the meds but we also have lots of experience with the problems that can occur. Because of our daughter's unusual problems with the single allele of prothrombin G20210A which usually does not cause long-term extensive problems, he was tested for all known clotting disorders. He has none, just the A Fib problem. Anyway, I'm hoping to gain some information on living with the management of this problem.

Hi! I'm glad to find this team!! I lost 50 lbs and got to my ideal weight on spark before I got pregnant in 2010. I had a difficult pregnancy and was put on bedrest the last 3 months for hypertension, but the baby was born healthy (after a very short NICU stay). Everything seemed fine. All of the sudden, my BP went up to around 210/140. I obviously went to the ER. They were going to let me go home with an increased dose of BP meds, but since I was also complaining of a headache, they decided to admit me so that the neurologist could see me the next day. "Just to be safe" he did a CAT scan. About an hour later, he comes in (I will NEVER forget the look on his face) and basically tells me that I will be moving to the stroke unit because there is a large blood clot in my brain. (venous sinus thrombosis). I was horrified and even worse, my newborn baby was at home! Of course, I was put on Coumadin.
This would be fine, except that about 4 months later, I had a pain in my abdomen that got so bad I couldn't move. I literally fainted when I got up and asked my husband to call the ambulance since I couldn't walk. When I arrived at the hospital, I was WHITE as a ghost with a bp of 40/20. Turns out, I had a cyst rupture on my ovary and the coumadin was allowing me to bleed into my abdomen. ICU stay (more time away from my new baby!!!)6 blood transfusions and a surgery later, I was pronounced "fine" and that the whole almost bleeding to death thing was a fluke.
Later, after 6 months, the re-scan of the clot showed "no change" and it was still 3cm (!!). Still, both the neurologist and hematologist said there was nothing else they could do and I was probably safe to get off coumadin. I was happy about this, yet scared.
Fast forward a few months and they did some blood work after I was off the anti-coagulants for a period of time. Turns out, I have lupus anti-coagulant inhibitor and just this week, they put me back on coumadin FOR LIFE (it seems). I'm cool with preventing clots, but am a little reluctant due to the ridiculous bleeding episode. Anyhoo, that's it. The baby is now one and I hope he doesn't remember how much time I had to spend away from him.

Welcome newer members. I know it is definitely scary to deal with blood clots, and yet some people just kind of brush it off like it's no big deal when I tell them. It is nice to know that there are people out there who have gone through what I've gone through and what I'm still going through. I hope you find the support you need here.

This is kind of long, and if after reading it you all come to the conclusion I am in the wrong group, just tell me I will not be offended.

Hello. My name is Michelle. I am a 45 single mother putting her son through college. 2 years ago in Utah I was rushed to the hospital unable to breath. After 4+ hours of tests I thought for sure they would tell me it was all in my head and send me home. I had been experiencing the chest pains and difficulty breathing for a long time, but everyone told me I was a hypochondriac so I did nothing. After several tests a nurse comes in and pulls up the side rails things, puts in an IV and starts wheeling me upstairs as he tells me they are admitting me. I said "well can I at least use the bathroom"? After all those tests I really had to go.
He says "no ma'am, didn't they explain? You have 2 very large blood clots that are as such that if you move the wrong way and they head to your heart or your brain, the emergency team would not be able to move fast enough to save you".
Maybe that nurse was not the best person to tell me. I got real scared real quick. I was in the hospital for 2 weeks and on Coumadin for a year afterwards. Got tested regularly and was taken off the medication. They had told me since it was not hereditary and they saw no medical reason that it was probably just a fluke. PROBABLY? I am now in Texas and recently (couple weeks ago) started getting sharp pains in my chest. It was not until today I compared it to 2 years ago. I have no insurance and am hoping this team or any other team suggested will help me in taking the natural route in preventing a recurrence of blood clots. I could cry thinking of how scary that was.

Hello, I'm new. I just joined, fresh out of the hospital after a 5 day stay. I was in for blood clots in my lungs. (I was immobile after a car wreck.) I will be on coumadin for at least 6 months and this is all very scary to me.

Hello! My name is Amy and I had my second PE in January so I am on coumadin for life. So far, testing has not come up with a reason for the PE's but I am not giving up looking! Currently I am on 7.5mg/day but I am not sure how comfortable I feel with my doctor in caring for me. She is new to me and they are just using the "mini-machine" and have never had a lab level drawn to check to see how it correlates to the machine. I think I will ask for one the next time I have a level taken, I am a RN; however, my speciality has been labor and delivery/high risk. Currently I am on disability for RA/OA/degenerative arthritis, plus I have GERD, neuropathies, COPD (from the GERD, not smoking), etc.

I have been married to my DH for almost 40 years and have 3 daughters, 7 grandsons, 1 granddaughter, and 1 great granddaughter of all whom I adore!

I love to eat fresh vegetables and salads and eat them while taking the coumadin. So far, this has not been a problem as long as I eat the same amount every week. Sometimes, that can be challenging! I was happy to find this team - it was through someone responding to a comment I had left on someone else''s Spark Page!

Hello all. I am Tasha I was diagnosed with APLS in 2006. I had a Clot in my Lung, and One in each of my kidneys. I have been on Coumadin getting my levels checked once a month. Its funny how the Hemotologist said it is a rare condition but every day i see and hear about more and more people who have the same thing.

I am new to this group and enjoy talking to others to see what and how they keep thier levels stable and still lose weight while exercising.

Nice to meet you all.

Hi,

My name is Chris (male) and I've been on Plavix (75 mg) since September 2010 following surgery to put 3 stents in my arteries. I slowed down for about 2 - 3 months, but I'm back to a full exercise routine and haven't noticed any issues with the blood thinners. However, I would like to know more about them and their effect on people. This looks like a great site!

Hi, I'm Jenny, new to SP.
I had my first DVT in 05 when I was 7 months pregnant with my son. 6 months after he was born I was free of blood thinners. All testing showed no reason for the DVT other than pregnancy.
March of '09 I got another unexplained DVT.
So, now I am on coumadin for life.

My name is Debra and I've been on Spark since March 2010. I had my first blood clot in my left calf in 2003 after breaking my foot. I was on Warfarin for 6 months before being removed from it and thought that was that.

After dealing with infertility and finally getting pregnant in 2010, I ended up in the hospital in July with a blood clot in my leg. Part of it had broken off and traveled to my lungs where I was told that the size of the bilateral pulmonary embolisms was substantial.

Because I'm pregnant, I'm on injections twice a day (soon to be 3 times a day) and have been since I've been about 9 weeks pregnant. I'm not sure yet if I'll have to be on blood thinners the rest of my life. I'm also not sure yet if we're going to have any more kids after this one, considering the risk to my health. In addition, we have to be very careful about getting pregnant in the future if we decide to do so, so that as soon as I get a positive pregnancy test result, I can be put on blood thinners again, if I'm not on them for the rest of my life and therefore already taking them. If I am already on them, we'd have to see if my insurance would cover me switching to the injection just to try to get pregnant... so I am thinking that we may not try for any more pregnancies if that is the case.

I did find out that I have factor V Leiden, but more testing needs to be done once I'm no longer pregnant.

I am a long time Spark member, at goal for some time now. My 72 year old diabetic husband suffered an embolitic stroke on Wed, and I am still giving him Lovenox shots (I hate it). And he is starting warfarin. Rat poison. It's come to this. I found him quickly after the stroke and called 911. He got to the hospital in time to get the clots dissolved, and he has regained just about all of his speech and the use of his right arm and leg. Oh Thank God I was at home! At the emergency room, they said he had damage from an old stroke that he didn't know about (?), and that this stroke was actually a cluster of 7 simultaneous small strokes. Whoever heard of this stuff??

He is now finally taking his diabetes seriously, but I have to learn about the vitamin K thing. Not something I've ever had to track. The doc says he can have any amount of vit K he wants, but it has to be exactly the same amount every day. A big order. Diabetics have to concentrate on green veggies, so I am glad I have people here I can ask.

I have worked so hard for so long to keep my weight down, and now I have to follow his food very closely...he sure won't. At least he is ready to let me. This was quite the wake up call. I think we are both suffering post traumatic stress right now.

Wow! I was suprised to see this team. I got a blood clot in my left leg in 2006 about a month after having a hysterectomy. I was wearing a hormone replacement patch at the time. They did testing and found that I have 3 proteins in my blood that tell it to clot. They are Lupus Anticoagulant, Viper Venom and Factor 5. I took Coumadin for a while but my body did not tolerate it well and I had alot of blood in my urine and bruising excessively so they put my on aspirin and said that we would deal with another clot if it came. I was overweight at the time and have since lost a lot of weight which was really helped me to feel better. It was good to see this team and feel like I am not alone with my disorder.

Edited by: JULEY0129 at: 7/30/2010 (18:30)

Hi all, I had a small blood clot in the brain in 2004 ( my balance is off, I lose my train of thought and words, my left side is numb and does not work right, )and was put on 2mg Warfarin a day, as the weeks went on my dosage went up to 10mg, I talked my doc into doing tests to find out why and found I had Lupus Anticoagulant Reflux, I try to avoide foods with vit K, so I am missing out on a lot of the vitimans contained in those foods, and I think that has caused my health problems. I have gone from 130 pounds and active, to 230 pounds and can't walk across the room without my legs cramping up, my hole body is out of wack, I need to lose weight bad, but don't know where to start, my doc is no help at all, I am so glad I found this site now maybe I can get the support and addvice I need

sorry if I posted this in the wrong place

Edited by: SAMEEEES at: 7/21/2010 (19:08)

Hi & I welcome you to the team. You need to keep at trying to lose and walk. The blood in extremities tend to have a stasis problem when you are inactive. I also am concerned that you haven't been to a regular Dr. for control of your bleeding time and renewal of you blood thinner. Until you are really stabilized on the thinners, it is dangerous to not know what your bleeding time is.

Weight loss can happen even when you are not very active. Use the tab called My Tools, then the nutritional tool. Keep a very accurate list of ALL the food you put into your mouth. You can be very amazed at what you see. This is the main tool I have used and continue to drop the pounds. I haven't used the site meal plan at all as it doesn't fit into what I can eat for many reasons and it is still working for me. I wish you the best on your journey to a healthier lifestyle. Keep in touch & keep an eye on that INR/PT. Eileen

Hi
I have had a DVT and would like to share experiences - I now have been taking blood thinners for some 8 or 9 months and have not seen a dr because he said to lose weight and I have only just begun a month ago.
I spoke to a vascular sergeant who is a neighbour and he said it is no use and that I should now take antihistamine's...
I wear a bandage on my leg
I earned this from an injury years ago and it has never healed
I simply twisted my ankle while chasing a thief! I know! My leg got swollen over night and it never got back to normal.
I am very worried and would like any info that you care to share. I am mostly doing this to try and help my condition.
The dr I spoke with (my neighbour) said the best way to fix it is a surgery. If that is the case, I am ok with it! But I believe I have to lose weight first. Not all but enough to get me out of the dangerously obese category
I have not taken good care of the leg. I got fat and heavy and after I had bad luck with dr's after the injury, I had not seen one until last summer.
Now I found a place in my mind where there's some strenght left and am working on losing weight and all in hope to help cure this - I intend to see a dr after I have reached at least 80kg.

Hi from Eileen in MN. I have joined to be able to talk with others that have a clotting problem. In 2003, I had Gallbladder surgery and 5 weeks post-op I developed breathing problems that increased on a daily basis. I was diagnosed with multiple pulmonary emboli. We did a genetic workup and my blood was sent to Mayo Labs as well as the U of MN. This was done because my father almost died from a hugh clot and there are several relatives that have had clotting difficulties. I was finally told there is no lab test to prove and that my blood is being kept for future testing as most likely, our family has a link that has not been found yet. I will be on Coumadin for life and we try to keep the INR at 3 to 3.5. It scares me when I have to cut back or go off for any procedures. Glad to be here to chat.

Hi,
I'm 21, was diagnosed with DVT in March, after two months of intermittant back and chest pain i work up with a painful and blue left arm. They beleive it is because of Birth Control and a genetic predisposition, but have been sent for a different test or xray each week since, on top of my INR tests. Been having trouble getting my INR level settled.
My brain is fuzzy, I cant concentrate, im tired all the time and often get the feeling something is pushing down on my head. Otherwise lucky to be where I am after PE and DVT.
Nice to know there is a support group on SparkPeople

Hi, my name is Donna; I am new to this group. I was put on coumadin back in July after a whirlwind vacation with the risk factors of: overweight female over 40 on birth control (never smoked) AND I had just completed a 10 day vacation (visiting 14 Hard Rock Cafes via planes, car and subway) all through NE US and Canada. Oh yea, I also had bladder cancer surgery waiting for me when I came back!
Anyway, cancer surgery was postponed since I was put in ICU with calves (cows?) full of clots and PE's in both lungs. I recovered, had the cancer removed started working on my weight when my cancer doc wanted to do "a few more tests" - gee, thanks mom & pop! I found out I tested positive for the MTHFR genetic mutation which means I am prone to clots. So it's coumadin for life for me but I see I am not alone! Compression hose and Vegas summers rock together. Really, they do! Yeah.

Hey all....
Here I am, the odd ball, that 1 in 100,000 people that end up with the DVT as a result of the birth control pill.

You add that, a undiganosed family history, a fall, and SPLAT, there's my first clot in 2002 at the ripe age of 19 years old.

Learning how to walk again was not a fun experience at 19, but hey, you do what you've gotta do. I don't think I'll ever question if I'm strong or not after that.

Being the typical smartie pants 20 year old, I decided to quit taking the drug, which makes me very cold and to bruise like a peach.

Recently in March 2009, I fell again, and ended up with a DVT in my opposite leg again.

So here I am... two clots down... rat poision for life, and now struggling to be as healthy as I can be so that I can look towards a pregnancy and children with my new husband in future. It hasn't been an easy road.

Cheers, Holly

Hi all! My name is Lynn. I had DVT & bilateral PEs in October. My mother has had both and has the Factor V, so I was well versed about coumadin.

I tested fine for Factor V, but lupus anticoagulant problems (antigens). I was told that if I came off of my birth control pills and had 3 good tests, I could come off of coumadin.

Just got back the final nail in the coffin last week. Have to stay on it for life.

At least when i finally gave up being so careful, my PT/INR levels finally stay level. I'm on a first name basis with everyone at my PCP's from all of my visits.

I put on 20 pounds in 6 weeks after coming off of the hormones. On January 4th I committed to sparkpeople and have lost 36 pounds. Not an easy task with 2 other medications that I'm on that put on weight!

Hi, I was also diagnosed with bilateral pulminary embolisms 6weeks ago after the birth of my first bub 8weeks ago. Test results showed that I have a heterozygous factor v leiden gene which caused the clots throughout my pregnancy so im now on warfarin for life, still tryna get my INR stabilised tho as were having trouble getting it up. I have to lose this weight as its just adding to the clotting risk factor, and for my lil boy, Osiris.

Welcome to the team...You probably need to increase your dose!! What does your doctor say??

Hi. My name is Michelle.I'm a 35 year old mother of two. I had a blood clot last May. I've been on coumadin since then. I can't seem to keep my INR levels stable. The last time I went to have it checked it was a 1.3. I can't seem to stay in the normal range. I'm not skipping doses, and staying away from vitamin k. I'm open to any suggestions.

Hi. Great to find this team. I had a PE in October. I had previously had a DVT (2005), so now I am on coumadin for life.

I am an avid runner and cyclist. Dr. gave me the go ahead for light exercise 2 weeks ago. YAY!

Sometimes it (the coumadin, the INR, the Dr, etc) gets a little overwhelming. It is hard to explain that to someone who has never experienced it, so I am so glad to have a place to go!

Welcome to the team!! Can't say I've experienced weight gain due to this medication...

I have been on warfarin for 21 years due to an artificial aortic valve.

Hello, I just joined today and hope to find others with similar experience so I do not feel alone. I was diagnosed with Factor V which is a blood clotting disorder for those who do not know. This was diagnosed due to severe migraines that were getting worse and more frequent. The migraines stopped after I began taking warfarin 4 years ago. However, I immediately began gaining weight and it has not stopped. The doctor says the weight gain is not related but I know it is as I dropped 5 pounds in 2 days when I forgot to bring my medicine camping over the summer. Wondered if anyone else has experienced this.

first off to Gayle:
My doctor suggested walking. I would suggest you make your doctor give you examples. You pay him/her to give you good health care and you deserve complete information.

That said,

Hi I'm Stacy,
I am a 27 year old mother of 4. My children are ages 6, 5, 18 months and 6 weeks. I am also a freelance artist. I am married to 2 wonderful guys. (Look up polyamory to get answers to that.)
On election day of this year I woke with horrible pain each time I breathed in. After going to the ER I was diagnosed with bilateral pulmonary embolisims. So both of my lungs had clots. The general consensus is it's related to my recent pregnancy. However my maternal grandmother is on Coumadin for the rest of her life due to clotting issues. I guess time will tell for me.
As you can see from my little ticker, I have a lot of weight to lose. My real goal is healthy weight, but I am taking it 10% at a time.
I look forward to getting to know you all.

Hi, I'm Gayle,
I have been on Cumadin since January 2008, also have 3 loveanox shots a week. I have just been released by my doctor to do some light physical exercises as I am having some belly fat problems and my weight has increased from 188 lbs to 253 lbs since Jan. Up until I got sick I worked everyday in a convience store, I did all my housework and my cooking. Now I spend my days with my leg at heart level, eating what ever my husband brings home and watching the dust bunnies run from corner to corner. My doctor has said I can do some exerciseing, that I need to do some exerciseing but he did not give me any examples. I am hopeing You ALL can help me out with suggestions.

Thanks in advance.
Gayle

Thanks I'm glad to be back.

Nice to see you!!

Kat: I'm back to stay.

Edited by: JOE731 at: 10/12/2008 (21:25)

Welcome Melissa,

I hope you will stay on this team too... I'll check yours out right now!

Kat

Hi everyone my name is melissa and I have been on blood thinners for 4 months now. I started a team for blood clots and bloo9d thinners so if you have time come and check it out!!!

Welcome Desiree!



Kat

Good morning!

I'm glad I found this group. I'm very newly diagnosed (3 weeks ago) so I'm still learning about this problem. I have Antiphospholipid Antibody Syndrome. My problems started out in mid-July. I started having a neck cramp that just wouldn't go away. Finally the pain worked its way into my back and then ultimately into my legs. It felt like I had a horrible leg cramp that wouldn't go away. I couldn't walk or basically do anything.

After many weeks of various doctors running all sorts of tests, I finally got in with a Rheumatologist. She really took care of me and finally admitted me to the hospital, where they finally discovered the clots. Not sure if the clots were due to my immobility or my birth control that I was on. And they never did determine what infection I had to start with but now that they've discovered the APS, I'm likely going to be on the Coumadin for the rest of my life.

Well enough of the boring stuff, hehe. Anyway, my name is Desiree' and I'm 34 years old. I have a wonderful husband of 4 years, Chris and a wonderful daughter, Devyn, who is 14.

Hey Dubby,

Nice to have you here!

Kat

Hi everybody,

I'm Dubby and I've been on blood thinners for almost 2 years.



Edited by: DUBBY-DUBBY at: 9/9/2008 (10:11)

This was my first diagnosed blood clot, although I think I may have had ones before that did not get to this extreme.

My 2nd blood test result was 3.3, so they adjusted the meds. My doc probably will test for all the disorders, she is a great doctor. I go back to her in the 12th. I'll ask. Thanks!

That is true about some of the tests that they can do, namely the Protein C and Protein S. But, there are others that can be done while you are on Coumadin. You may want to see a hematologist (blood specialist) to see what they would recommend. Was this your first blood clot?
I had three before they finally did the testing. I have a genetic marker called Factor V (five) Leiden deficiency. This along with another marker make my blood clot more than someone without those markers. Thus, lifetime on Coumadin.
As far as your number goes, usually the theraputic range for someone with a history of a blood clot is between 2 and 3, so yours is good.
I am a Nurse Practitioner at a family practice clinic. I see a lot of people come in with a history of blood clots without the hematologic workup.

My doctor does want to do that test, but I had already taken coumadin in the ER. She said once I took it, the test is useless. I am staying on coumadin for 6 months and then go off for the tests. My first blood test number was 2.4. Is that good?

Make sure your doctor does a hypercoagulability panel on you. This will let you and him/her know whether you will be at increased risk for future blood clots. Some genetic markers make some of us more prone to clotting and require anticoagulation for life.

Welcome, this is my first day on this team too. "Be it ever so humble there's no place like home".
Welcome


Edited by: JOE731 at: 8/30/2008 (17:51)

Hopefully I will get off the lovenox on Tuesday - I go for my first blood test then. The doctor said I would be on coumadin for 6 months.

Welcome to the team. I hope we can help.

I'm just on coumadin/warfarin for 20+ years and never had any reactions to them other than they are a HUGE pain in the butt to me!!!

My name is Charlene. Two days ago I was diagnosed with DVT in my right leg. The clot starts in my pelvis and ends down past my knee. I never would have guessed this b/c I teach Jazzrecise and I just thought I pulled a muscle. I am on coumadin and lovenox. Has anyonwe had reactions to these?

Hi I'm JOE. Recovering from my third stroke. (yes my 3rd) Been a member of SparkPeople since 2006. However, just found this team. On Plavix.

Hi....I am new to Sparkpeople (couple of weeks now). Am on my way to my initial goal of less than 200 lbs. Only have 5 to go. Loving this website. It is nice to have somewhere to go and be myself. I have finally decided to do something for myself. I am 25 pounds lighter already and am determined to continue on my weight loss journey. I just turned 37. I am on Coumadin due to blood clots in my leg. Have been very theraputic on the Coumadin. I am married with 3 children. Happy to join this team.

I think this title speaks for itself! Welcome new members!