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SKIMBRO's Photo SKIMBRO SparkPoints: (29,325)
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2/23/14 9:20 A

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Hi all, I am Sandra. I had a stroke over 2 years ago and I have been on ecotrin every since. I am still not able to get my blood pressure undercontrol even with 3 meds and the meds are causing me so much discomfort from all the side effects.

I am working on loosing weight so that I can possibly get lower my meds or possibly get off of some of them.

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FINNSHMUMMA SparkPoints: (963)
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1/16/14 2:18 P

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Hi...I'm a female...soon to be 73...and I have a-fib. I've been cardioverted 4 times. First time was June of 2009. I have been on warfarin ever since. I have no problem keeping it under control. I make sure I continue to eat my favorite Vitamin K veggies on a regular basis. My problem is making sure I have the correct amount of magnisium, potassium and folate. I was diagnosed with bladder cancer in Feb of 2011. The removal of the tumor was successful but I needed chemo and radiation. I had 6 chemo and 35 radiation treatments. I could not have the 7th chemo because my blood test showed a problem with my kidneys. The chemo med caused me to have 30% kidney function. I have to be careful of too much protein. I have always ate quite healthy with alot of whole wheat, low fat and low calories in my diet. I'm on a lot of meds that have caused weight gain and it's quite difficult taking it off.
I need to know if anyone can recommend good supplements to take. I've recently been diagnosed with sleep apnea and on a cpac every night. I'm a very positive thinking person and have not allowed my health problems to get me down.....other than no be able to shead the extra lbs. I always had good luck with Weight Watchers, but they changed their plan and I do not like it. Any suggestion would be greatly appreciated.

SERENE-BEAN's Photo SERENE-BEAN Posts: 1,381
11/28/13 1:31 P

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Hi, I'm Serene. I took my first dose of Warfarin last night. It's bumming me out to be on it, but I had an episode of atrial fibrillation, so the cardiologist said I really need to do it to protect me from stroke. I'm here to hear your stories and hear that this isn't the end of the world from folks who are doing it.

Edited by: SERENE-BEAN at: 11/28/2013 (13:32)
Serene Vannoy
Bi poly atheist poet and fatchick extraordinaire

I am worthy of love, belonging and joy now, as is. - Brene Brown

Co-leader of the Chula Vista SparkTeam: www.sparkpeople.com/myspark/groups_i
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LINXOFFIRE1's Photo LINXOFFIRE1 SparkPoints: (1,872)
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8/5/13 6:38 P

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Hello I am Angela, I am from Lincoln Nebraska and a mother of 4 girls. They are Eleanor 15, Brittany 13, Baylee 12 and Samantha 11. I am back together again with my first husband and father to my oldest. We are both doing the spark program together. I get up every morning at 430am and make him breakfast pack him lunch and snack. If that's not love i don't know what is.

This i had a blood clot in in my lung and was put on warfarin. Man i hate that stuff getting blood checked every week cause they can never get it to stay the same level. I am currently trying to get over pneumonia so fun. So trying to get a workout in is tough.

but on the bright side God is with me keeping me strong and i have already lost a pound in 2 days. So I am now looking foward to what this program is going to do for me and what my hunnys results are going to be.

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RINGRANGRUNG's Photo RINGRANGRUNG SparkPoints: (6,477)
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5/19/13 8:50 P

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Hi! I am denise- I have antiphosolipid syndrome- a blood clotting disorder. I have a clot on my L leg that runs from my groin to my ankle that will never completely dissolve despite being on warafin. It took a long time for my dr. to believe that I had a clot- even though I had this diagnosis. By the time things were being done for me- I was put on heparin shots plus warafin and my blood was so thin, that I had a brain bleed. Luckily, I am fine, but it is hard to do any exercise and I get out of breathe easily. I did fairly well last summer using sparks, tracking my meals, but then I injured my legs( no clot!) but then winter hit and I gained back the weight! I'm struggling with myself. My leg aches, and the very foods most use to loose weight, I can't eat cuz they mess with my INR! Does anyone else have this problem?

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LUANN7's Photo LUANN7 SparkPoints: (43,062)
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3/13/13 10:40 P

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welcome annc1325

I can do all things through Christ who strengthens me!! whoever believes in him shall not perish but have eternal life!!!
LEADER-PARTNERSHIP ACCOUNTABILITY TO THE FINISH LINE.
CO-LEADER SHINING FOR JESUS
CO-LEADER GOD ANSWERS PRAYERS
C0-LEADER GODS AMAZING GRACE
CO-LEADER CHRISTIANS WITH 100 POUNDS TO LOSE
CO-LEADER GOD WORKS AMOUNG US


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LUANN7's Photo LUANN7 SparkPoints: (43,062)
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3/8/13 2:18 A

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Welcome aboard Rob

I can do all things through Christ who strengthens me!! whoever believes in him shall not perish but have eternal life!!!
LEADER-PARTNERSHIP ACCOUNTABILITY TO THE FINISH LINE.
CO-LEADER SHINING FOR JESUS
CO-LEADER GOD ANSWERS PRAYERS
C0-LEADER GODS AMAZING GRACE
CO-LEADER CHRISTIANS WITH 100 POUNDS TO LOSE
CO-LEADER GOD WORKS AMOUNG US


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ROBOLOGY Posts: 1
3/7/13 9:57 P

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Hello Everyone,

My name is Rob and I have been on Warfarin since January 2011 when I was diagnosed with a DVT in my left leg. I have been to a hematologist that was unable to figure out how I got the DVT, even after numerous blood tests. I am currently seeking an answer from another hematologist, but am unable to see him until June of 2014 although all my blood tests have been completed. I am currently trying to eat healthy to lose weight and maintain a healthy lifestyle, but the intake of Vitamin K has lowered my INR this week. But my nurses informed me that as long as I continue a consistent diet which includes regular intake of Vitamin K, then they can figure out my correct dose of Warfarin.

I will be glad when I finally receive an answer as to why my blood has the tendency to clot, but for now all I can do is continue to take the anti-coagulants, eat healthy, workout, and get INR checked on a weekly basis. Thanks for listening :)

LUANN7's Photo LUANN7 SparkPoints: (43,062)
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3/4/13 11:17 P

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Welcome Song of deborah

I can do all things through Christ who strengthens me!! whoever believes in him shall not perish but have eternal life!!!
LEADER-PARTNERSHIP ACCOUNTABILITY TO THE FINISH LINE.
CO-LEADER SHINING FOR JESUS
CO-LEADER GOD ANSWERS PRAYERS
C0-LEADER GODS AMAZING GRACE
CO-LEADER CHRISTIANS WITH 100 POUNDS TO LOSE
CO-LEADER GOD WORKS AMOUNG US


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LUANN7's Photo LUANN7 SparkPoints: (43,062)
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3/4/13 11:00 P

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Welcome Trista nice to have you onboard!!

I can do all things through Christ who strengthens me!! whoever believes in him shall not perish but have eternal life!!!
LEADER-PARTNERSHIP ACCOUNTABILITY TO THE FINISH LINE.
CO-LEADER SHINING FOR JESUS
CO-LEADER GOD ANSWERS PRAYERS
C0-LEADER GODS AMAZING GRACE
CO-LEADER CHRISTIANS WITH 100 POUNDS TO LOSE
CO-LEADER GOD WORKS AMOUNG US


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TRISTAMELLS's Photo TRISTAMELLS Posts: 224
3/4/13 4:12 P

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Hello there...my name is Trista. I am a 28 yo with three children, they are all crazy boys, ages 9, 7 and 5. I am married and work full-time. When I was 24 I was diagnosed with a blood disorder that causes blood clots in my brain. It started with me having terrible headaches (which I had never had before) and moments of being a "ding bat", as my mother would say. Went to the dentist, to get acupuncture and massage, have my eyes tested, anything I could think of, and was finally called from a hematolgist that said I was having TIs and there was a room ready for me at the hospital. I did suffer memory loss, still deal with it today. Am realizing that trying to stay on track and lose weight is harder then it used to be. Am assumming that has something to do with the memory problems and am here hoping to get some tips and tricks to get myself healthier. Thank you!!

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LUANN7's Photo LUANN7 SparkPoints: (43,062)
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2/12/13 3:12 A

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I applied for the leader role in this team and I am one of your new co-leaders. If you have any questions or problem feel free to message me at anytime. I am online daily.thanks-lets go team!

I can do all things through Christ who strengthens me!! whoever believes in him shall not perish but have eternal life!!!
LEADER-PARTNERSHIP ACCOUNTABILITY TO THE FINISH LINE.
CO-LEADER SHINING FOR JESUS
CO-LEADER GOD ANSWERS PRAYERS
C0-LEADER GODS AMAZING GRACE
CO-LEADER CHRISTIANS WITH 100 POUNDS TO LOSE
CO-LEADER GOD WORKS AMOUNG US


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LUANN7's Photo LUANN7 SparkPoints: (43,062)
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2/8/13 3:06 A

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HI I AM 54 Y.O. AND HAVE HAD 2 STROKES THE FIRST ONE WHEN I WAS 46. I AM A REGISTERED NURSE, MARRIED WITH 2 GROWN CHILDREN AND 2 GRANDSONS AGED 1 AND 3. i HAD A BLOOD CLOT IN THE BACK OF MY RT EYE ALSO AT THE SAME TIME. I AM ON THE BLOOD THINNER PLAVIX.

I can do all things through Christ who strengthens me!! whoever believes in him shall not perish but have eternal life!!!
LEADER-PARTNERSHIP ACCOUNTABILITY TO THE FINISH LINE.
CO-LEADER SHINING FOR JESUS
CO-LEADER GOD ANSWERS PRAYERS
C0-LEADER GODS AMAZING GRACE
CO-LEADER CHRISTIANS WITH 100 POUNDS TO LOSE
CO-LEADER GOD WORKS AMOUNG US


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TXCRICKETT's Photo TXCRICKETT Posts: 68
1/31/12 6:37 P

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It has been 2 years since I was here, but I am back. It has taken about 3 years for me to find a workable food plan that I can actually lose weight on while on warfarin and with limiting all the high vitamin k foods which really ticked me off. Like it wasn't hard enough to lose weight, but now do it without all the green stuff! But I think I finally figured it out, and I don't have to go get stuck every week to keep my INR regular. 3 years ago threw bilateral pulmonary embolisms and was told had a genetic disorder called Factor V Lieden, which many of you probably have too. I will be on warfarin for the rest of my life and I desparately needed to find the balance of what to eat to accomodate both the warfarin and the weight loss. I have lost 20 lbs as of today and I am so excited. This is possible. And I refuse to give up.


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KIWIMUM812 SparkPoints: (13,554)
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1/26/12 8:46 A

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Hello, I'm Lorraine. I'm new to this group. I'm a 30 yr old sahm to 17 mo twin girls. I posted my full story in another thread but here is an abreviated version. I have been on warfarin since 2004 after a dvt in my left leg and a diagnosis of antiphosphilipid antibody syndrome. I took 60mg twice daily of lovenox while trying to get pregnant, through my pregnancy and while nursing. I'm looking to stay active and healthy for my family

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CATMAGNET's Photo CATMAGNET SparkPoints: (38,918)
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1/3/12 12:40 P

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Michelle, I agree with the gentleman who responded. I am able to get my Warfarin supply at $4 for a 30 day supply (which equals $5.07 for me, since I have 38 pills every month) at Kroger. Warfarin is also on the $4 plan at WalMart and other stores.

Best of luck to you! :)

Jane

Camp Good Grief 5k 2012 - 31:50
Gobble Wobble 5k 2012 - 30:00
Turkey Trot 4 Mile Race 2012 - 38:38
Ugly Sweater 5k Fun Run 2012 - 27:19
Move-It Memphis 10K 2013 - 55:36
Germantown Half Marathon - 2:08:53
FedEx St. Jude Classic Fairway 5k - 4/13/2013
Pittsburgh Half-Marathon - 5/5/2013


CATMAGNET's Photo CATMAGNET SparkPoints: (38,918)
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1/3/12 12:38 P

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Brand new here for the new year!

I've been on Warfarin since July 2010, due to a DVT in my left knee as a result of taking hormones to treat my endometriosis (basically trying to supress my cycle so that I am not in excruiciating pain every month, needing morphine...yes, the pain was THAT bad!). They switched my hormonal treatment, and have been clot-free ever since. However, a lot of the healthy vegetables that I love are the ones I have to be extremely careful with, which frustrates me to no end.

I'm so glad I found this group...hopefully together, we'll be able to figure out some ideas to not only lose weight but keep our INRs in check! Thanks for being here!

Jane

Camp Good Grief 5k 2012 - 31:50
Gobble Wobble 5k 2012 - 30:00
Turkey Trot 4 Mile Race 2012 - 38:38
Ugly Sweater 5k Fun Run 2012 - 27:19
Move-It Memphis 10K 2013 - 55:36
Germantown Half Marathon - 2:08:53
FedEx St. Jude Classic Fairway 5k - 4/13/2013
Pittsburgh Half-Marathon - 5/5/2013


TASHANCARRION's Photo TASHANCARRION SparkPoints: (6,984)
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8/26/11 9:43 A

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Hello everyone new here, i posted my stoy in the other thread. I have been on Warfarin (Generic Coumadin) since May 2005, taken Lovenox injections, 100mg one time a day, when i was pregnant with my daugher.

FUNKY_CHICKEN, the generic brand itsnt too expensive. you should go to the doctor and get a prescription, most doctors undersand the financial side of it so you might be able to get a 6 month standing order as long as you take time every month to get tested. aprin my work for a little while but in the long run your best bet is to see a doctor and get your meds.

*Tasha - South Florida*

"If we wait for the right moment when everything, absolutely everything is ready, we shall never begin" SP Motivational Quotes



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MACKANDME's Photo MACKANDME Posts: 6,103
7/27/11 7:52 P

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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.

~Michelle Macari in St George UT~ Lifestyles of the fit and meatless!
What is it that should trace the insuperable line? The question is not, Can they reason? nor, Can they talk? but, Can they suffer? Jeremy Bentham (17481832)
A dead cow or sheep lying in the pasture is recognized as carrion. The same sort of carcass dressed and hung up in a butchers stall passes as food. J. H.
www.youtube.com/watch?v=zUMUvYLC5iM
White Phoenix


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BECKYLIZ's Photo BECKYLIZ SparkPoints: (31,289)
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5/13/11 6:32 P

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I an a 61 year old. retired mother of 2 adult children. I developed clots when I had a stroke 9 months ago. I am still in therapy and taking blood pressure medicine along with the coumadin.

JUST FOR TODAY, ONE DAY AT A TIME

John 3:16 KJV -
For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

"If the only prayer you ever say in your life is thank you, it will be enough" - Meister Eckhart


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GREENFLOWER7's Photo GREENFLOWER7 SparkPoints: (1,784)
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5/10/11 7:43 P

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I just wanted to say hi. My name is Lindsay and I am 29 years old. I was hospitalized this past August for a DVT which was the second one I had (the first was 14 years ago after a tramatic injury). So they called a hematologist in and turns out I have factor V Leiden. So that plus the being over weight has led me to be on coumadin for the rest of my life (which is costing me an arm and leg, but rather have to pay and not get another clot ya know?). That's my story! emoticon

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MERILYNN1's Photo MERILYNN1 Posts: 294
10/24/10 8:13 P

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I have read all these posts and I am amazed at your courage and perseverance. Actually I feel a bit of a fraud even being here - except that Coumadin is and will be a part of my daily diet for the rest (?) of my life. After a enormously stressful period of my life that lasted almost 5 years, after not taking care of myself, diet, rest, relaxation (what was that?) I had been having digestive upsets - one day the "gas" pain was so intense, I stopped off at the hospital ER on my way out to take care of my horses. Needless to say, I was shocked and scared to discover that I had had a heart attack. After a bunch of tests, I was moved to a big city hospital and handed over to a surgeon. (He was tough in some ways but I loved him) After an angiogram and the following angioplasty, I went home with a stent in one of the heart arteries - and - cumadin. I was glad that at that time I only had one horse, had stopped showing and training and Kelley, like me, was getting on in years. I totally agree with Heidi that I find the coumadin does drain my energy. It's not just the years that have slowed me down so much. The heart attack was only 5 years ago and I just can't keep up with my old schedule. The other problem I encountered was that I was given so little information about diet. It was all so vague that I, who almost lived on greens, wasn't helping myself. I finally found Dr. Gourmet's web site and his book The Quality Diet for Cumadin users. My levels were fine after that until I had dental surgery and had to stop the cumadin for 5 days. I am still, even with careful monitoring of my diet, not keeping a level PT and have been going to the lab and getting the doses changed weekly for the last 3 years!!! I have a new PCP and it looks as if she is going to get things straightened out. I have to say, I am so sorry that you all have had such problems - next to what I read from you, my "little heart attack" seems unimportant. I am a great believer in the Medicine Buddha and have put you all on my prayer requests from him. Blessings, Meri emoticon

Live in the NOW.
PRETZELOGIC's Photo PRETZELOGIC Posts: 328
10/15/10 3:54 P

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Been on warfarin since 2008, after a DVT and PE experience and the diagnosis of genetic cause: Factor 5 Leiden double copied. That means I'm on warfarin for life.
Biggest issue for me is the diet/exercise impact on my INR. I've had to increase my dosage back up to 7.5 mgs per day, and inr is still in the tank! It's frustrating to not be stable after all this time!
But moving and hydrating are all good things for people who have a tendency to clot, so I'll let them adjust my meds and stick with my program!

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HEAJOYO Posts: 12
10/5/10 1:27 P

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Hi!

I'm glad that you all exist on here as a group! My name is Heather and I am 31. I was recently hospitalized when a blood clot hit my lung. Until that happened, we had no idea that I even had a clot. It took a few week to get my level in a safe range, and now they seem to be staying pretty close to that range. They believe that it was my Birth Control that caused it, but my PCP is sending me to a Hematologist to be sure there is nothing else going on. I'm looking forward to being part of this group and sharing what I learn daily and hearing thing that are working for you. Well, gotta run. I have an INR test in a few.

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6/15/10 12:58 A

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Hello my name is Lynne and I am glad that I have found this team. I am a new member and hope that I can help and support everyone as they help me. I have many health issues (too many to mention here and you probably would't believe me anyway). I was on Cumodin for awhile but because of health issues and medications I could not keep me count regular. I am now on Plavix and it is much better. Please visit my spark page if you would like to know more about me and please add yourself as a friend as I would really appreciate that.



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LMSTRAW's Photo LMSTRAW Posts: 4,432
12/6/09 1:34 A

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HI, my name is Linda and I"m from South Central Virginia. I've had a problem with clotting for about 12 years now. My first clot was in my left leg. I had the endartectomy and mesh filter to clean out the cloth, after they first tried an angioplasty. With the angioplasty, the inner layer of my blood vessel broke lose..that was no fun. A month after this surgery, I was reclotted. This time I had a fem pop bypass. This clotted off in the recovery room.. Three months, a gangrenous toe and a heel ulcer later, I had another fem pop bypass. This one worked and is still open and doing fine. I had 2 heart attacks because of clots and I had a stroke (clot type, of course) 1 1/2 years ago. Two weeks after getting out of rehab from taht, I had another clot in my leg. When I had this last clot, they got aggressive to find my blood disorder. I have a Factor S deficiency. This is a familiar thing, too. I will be on blood thinner the rest of my life. The doctors say if I had been on them since my early 20's I would never have had all these clots...40 years later is a bit late to tell me, huh? But, now all the young ones in my family have been tested and hopefully they'll be spared this family disease. They told me if I eat foods with Vit K, to eat them consistently so that my INR would reflect this and my doseage can be adjusted for this. I have Crohn's disease so I can't eat a lot of greens for they set off diarrhea. But, being a southerner, I do love dark green leafy veggies! Now and then I do eat some, but I watch it and make sure it's a day or so before I'm going in to get my levels checked. I seriously do not want any more clots; no more strokes, no more heart attacks. This came from my mother's side of the family. Her dad died at 60 from a heart attack, one of many he had. Her older sister died at 15 from a heart attack; she had her first at 11. Mom's other sister had a stroke at 19. Grandad's family all died fairly young from this. We know where it came from, although that doesn't help. Our main concern is where it's going, and can we control it for them. I wish something I didn' like to eat was the natural antidote to coumadin! Somebody didn't plan this out very well! emoticon
I need a knee replacement but the doctor's don't want to do one because my blood vessels have been moved around so much. WEll, that, and my Crohn's is controlled by an immune depressent drug, which greatly increases my risk of infection. My parts aren't cooperating well with each other!
It's nice to be here and see so many other people who are taking this nasty medicine too; and see we can still lead normal lives!

```````````````````````````JUST FOR TODAY!
2003 wt 313
today wt 139
new wt 137


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LIONESS228 Posts: 843
8/16/09 3:35 P

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Hey All,
My name is Kim and I'm from NY. I got BC in 2001 after exploratory knee surgery and was hospitalized for nine days. WHEW!! Got them again 2/09 after injuring the same knee and Hospitalized for a week. Just trying to live with it. Due to allergies, I thought I was living and eating healthy but had to much Vitamin K. There's got to be a better way... emoticon

Hurting people hurt people.....Love yourself & others daily:)

Kim


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GEAUXGIRL's Photo GEAUXGIRL Posts: 839
5/14/09 9:36 A

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Hi Liz, welcome to the group! What has your doctor said about the lump in your calf? Have they done an ultrasound on it?

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REALIZ Posts: 3,157
5/14/09 8:40 A

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Hi, I'm Liz. Developed blood clots and had a PE after a ceasarian section. Had another severe reoccurence 5 years later, Have been on coumadin since then. Currently have a painful lump on my calf, scaring me.

 
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GEAUXGIRL's Photo GEAUXGIRL Posts: 839
2/17/09 2:01 P

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Welcome to the group Melanie!

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ADOLLGENER's Photo ADOLLGENER Posts: 39
2/17/09 1:57 P

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Nice to met you. So did you just go into a coma? How scary that must have been for you and your family. I have not heard of your blood clotting disease, but mine is genetic too and very rare. Have you found out who passed it on to you? I'm in the process of finding that out. I worry that I may pass it on to my children. We are so glad to have you here. Have a great day.

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MELANIETBI's Photo MELANIETBI Posts: 8,476
2/16/09 5:56 P

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Hi my name is Melanie

In 2003 after a coma, Dr's. discovered I have a genetic clotting disorder calLed MTHFR- Can any on relate
My story is so long....

The Coma just happened out of the blue, No car accident

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GEAUXGIRL's Photo GEAUXGIRL Posts: 839
2/11/09 12:35 P

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Welcome everyone! emoticon

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ADOLLGENER's Photo ADOLLGENER Posts: 39
2/10/09 12:54 P

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Hello everyone, I just wanted to introduce myself and say hello. I'm so excited to have others to talk to with the same heatlh problems that I face on a daily basis. Love to all.

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PAMELA0036's Photo PAMELA0036 Posts: 1,150
1/27/09 11:45 A

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Hello everyone sorry I have been MIA for awhile but I am now back.

I wear the support stockings everyday all day even when exercising. But my legs swell so much with any activity that I have to. I have had clots for years and exercising still is hard and painful. I had a clot in my right leg just about 4 years ago and that leg is finally feeling better but my left leg is still painful (clot just recently in that one).

My story is a long one were I clot all the time. I am into the hospital for venograms every 3 months with plasty done to open them everytime.

I have also had a hard time with my levels being all over the place. The doctors switched me to heparin shots for a few years, but recently switched me back to coumadin. With the coumadin they told me to take a mulitvitamin with k in it. I was at first confused but they explained that it helps regulate the level. I though what could it hurt and have been taking it for almost 3 months. My level changed only once and that was a week were I had been sick and not eating right. Also remember to keep your diet regular and eat about the same about of each food. Good luck!

Hope this finds everyone feel well!

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AFBDIET08 Posts: 41
1/26/09 4:18 P

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You can not stay away from vitamin K altogether - all you can do is try to keep it level every day (the same amount). For example - I eat a basic iceberg lettuce and carrot salad everyday for lunch, so I can never skip this. I keep from getting bored with it by tossing on varied toppings.
Also, try to get ahold of the "Coumadin Cookbook" - it might help with low vitamin K recipes. It might also mention which foods have NO vitamin K, like pork.
Before too much longer you'll begin to know you've had too little or too much vitamin K by how your body feels (I do now).

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MICHMARSAULLOPE's Photo MICHMARSAULLOPE Posts: 617
1/24/09 7:51 P

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Hi I'm Michelle. I'm 35 years old and had my first blood clot last May. I'm glad I found this group. I'm on coumadin. I can't seem to stay in the normal blood range for very long. Last test was a 1.3 result. I don't skip my medicine and I stay away from Vitamin k. Any suggestions are welcome.

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DIVA14 Posts: 6
1/6/09 12:58 A

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Thanks for the response regarding the support stockings. You have given me hope that my leg will return to normal. I've never been an athlete but did go to the gym regularly. I can't believe how much I miss working out. I can still do weights but find most cardio exercises difficult. I recently bought a rebounder (mini-trampoline) as I heard that it is great for circulation and is low impact. I'm just getting into it and it seems better than working out on my elliptical. Maybe I will someday work up to running 5k like you.

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GOLDEAGLE143's Photo GOLDEAGLE143 Posts: 135
1/5/09 11:37 A

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My brother-in-law is a doctor, so I pick his brain all the time. Aspirin, etc., are good when you take fish oil and drink a little wine. In other words, put all the aspects together to keep clots at bay, which is what I'm doing. Yes, greens do clot the blood, but I'm not going to live without my greens. If there is a natural way around it, I'll do it.

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AFBDIET08 Posts: 41
1/5/09 10:33 A

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WELCOME to the group Goldeagle143 and Diva14!!
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For Goldeagle143 - Watch how much of the green vegetables you eat because they naturally help clot the blood. As to what thins the blood I know that cranberry and grapefruit juice does and I think coffee and tea fit this category too, but you might want to google the question. Also, have you asked about taking aspirin, ibuprofen, or even baby aspirin which does thin the blood as well?

For Diva14 - I had the same problem as yours and had to work back up to exercising which took about 2 weeks to get back to where I was before my DVT. Overall it took several months before I really thought the clot was gone or bloodflow diverted and my leg felt "normal" again.
As to exercising with my support stockings on - that's the one question I have yet to ask my doctor (he's currently still in Iraq), but probably should. After several weeks went by, I sort of decided what works for me - so, the answer is: sometimes I do and sometimes I do not wear them. It all depends on the type of exercise and how much I will be doing. If I walk 30 minutes at a fast pace I do not wear them, but if I am doing a 5K or more, or I am going at a more moderate pace, I do wear them.
If the doctor gives the okay, after awhile you will just know when you need to use them and when you don't, but do NOT ever go without using them an entire day - I made that mistake and my leg let me know it!

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DIVA14 Posts: 6
1/5/09 12:07 A

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Hi everyone, I'm happy to find this group but sorry to hear about everyone's experiences. Mine is similar to other stories where I had unexplained pain and swelling in my lower leg. I was diagnosed with a DVT three weeks later, after the first ultrasound found nothing...I am 8 months into coumadin treatment and am waiting for a follow up ultrasound to find out if the clot has diminished. Does anyone else wear compression stockings? Do you exercise in them and are they uncomfortable? I am picking mine up next week and am concerned about wearing them during exercise and sweating in them. How long until exercise was comfortable, I still experience cramping in my calf when I try to exercise.

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GOLDEAGLE143's Photo GOLDEAGLE143 Posts: 135
1/4/09 4:51 P

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Hello all,

I'll try to be brief, but as all of you know, there is a scary story behind each of us and our conditions.

Six years ago, I was gaining weight at an unpleasant job. The side benefit was that I got to have long lunches, which I took full advantage of. One day in July, walking back to the parking garage from the Hard Rock Cafe, I noticed myself being out of breath. I could barely climb the stairs. I thought maybe I was coming down with a cold, so I tried to ignore it.

It got worse over the next few months, and was admitted to the emergency room November 3, 2002 with bilateral pulmonary emboli. They informed me that I was done being on birth control, and I wasn't going anywhere for quite some time. They put me on heparin immediately, had breathing treatments, and admitted me once they had a room in ICU ready. It looked like they had me hooked up to the space shuttle, there were so many tubes and needles coming out of me, not to mention the equipment that was monitoring me. Somewhere in the night, I went into arrest. They brought me back, but boy, did I hurt after that. I was in ICU for 3 days before they let me go to a private room.

When I got to the private room, there were tons of flowers coming in. I got 9 flower arrangements and a small plant for my bedside from my husband. I was amazed. The nurses would come in for my vitals, and as I read in their faces that they thought I was going to die. So I told one of them, "you don't understand... I'm not going to die". She patted my hand and said "of course you're not". GEEZ!

The doctors got together after a few more days of me not doing well, and said they wanted to do a TPA (clot buster). It could cure me, or it could kill me. I said to do it. They took me back to ICU to do it. When they gave it to me, I looked like I had the stigmata. Every place they had stuck me opened. The end result was good, but ugh... blood everywhere. And my husband wouldn't leave, so I had to use the potty chair in front of him and the whole world (glass ICU). How embarrassing!

I finally got to go home and was on coumadin for the next 5 1/2 years, until I developed a cough that wouldn't go away, and was diagnosed with mycobacterium avium complex (MAC). The pulmonologist took me off coumadin. I felt rotten and I've been worried about clotting since then, especially since I get pain behind my left knee, which is where the original clotting started.

Long story made short... I'm doing better. But I'm still concerned about clotting, since it's happened before. I forgot about the fish oil, and reading your posts reminded me to take it (thank you). Also, a glass of red wine in the evening will help to thin the blood naturally. I'm looking for other means as well. I will be keeping up with all of you on this. Coumadin is awful stuff. Did you know that rat poison is made of it? UGH! I don't want that in my body. Let's all get healthy together! We CAN!

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PAMELA0036's Photo PAMELA0036 Posts: 1,150
11/26/08 10:23 A

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Hello AFBDIET08

I also have the Factor V leiden Gene. I have told my siblings and with one one full brother and then 4 half sister and 2 half brothers it gets complicated. None of them have been tested, they all know what I have and I have left it up to them to do their testing. I have asked if one on each side would get tested so that we know if its from my mother or fathers side but so for no test.

I was lucky and didn't have any problems until 7 years after my last baby was born and had a tubal so no birthcontrol for me. My children now we have not tested them yet. We have decided that when the girls get older and need BC then the drs will be told before hand. Also if there is any major surgery or medical reason they then will be tested. As Life insurace for them will be hard to get once this is on the books.

There is also a group for Factor V is you would like to join.

Thanks
Pamela

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AFBDIET08 Posts: 41
11/25/08 2:25 P

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Hello everyone!
My story is similar to many of yours so I'll try to be brief...
My mother's family is prone to varicose veins and artery problems. So, whem my right lower leg started to swell just 2 days after getting off a 2hr non-stop flight in June 2007 I knew there was a possibilty of a blood clot. I was hoping it wasn't so, since I do have some arthitis in that knee and thought maybe it was just acting up.
Unfortunately, my insight was correct and I was diagnosed with a DVT behind that knee while in the emergency room. I was immediately given several tests, a diuretic, compression stockings, hot water compress, and heparin. I stayed overnight and was given prescriptions for lovenox shots (1 week worth) and coumadin. I was referred to a physician at the local heart and vascular office.
The tests came back that I had 1 gene for Factor V Leiden. (For those who do not know - it is a chronic condition the opposite of hemophilia - so the blood naturally clots too easily and too much.)
My doctor then referred me to a hemotologist (blood dr) who gave me some good news...
If it had turned out that I had both genes for this condition I would have had to stay on coumadin for the rest of my life. However, for me it is a risk factor only.
The hemotologist said that if I eliminate the other risk factors I had (birth control pills, excess weight, lack of exercise, high blood pressure, eat less vitamin K foods) I could try coming off the coumadin.
I am no longer on birth control or high blood pressure medicine. I have lost 56 pounds with 33 pounds to go. I am now taking omega3 fish oil capsules every day (side benefit - my arthitis has cleared up a lot) and I can now exercise for hours without the shortness of breath.
The hemotologist has already said I can try coming off the coumadin but I am waiting until my weight is where I want it to be and my fitness level improves (I need strength training now).

For those of you who have not said so, have you been tested for Factor V[five] Leiden? If so, and you have 1 or both genes - make sure you tell your family members. I told all my siblings and nieces/nephews. Females should NOT use any birth control if they have this gene.

I had a hard time at first with coumadin and my diet, especially restricting vitamin k foods. However, since I knew I wanted to lose weight I started eating a salad for lunch or dinner every day though I vary the toppings so I don't get bored. Also I recently got a copy of the coumadin cookbook to try to help me vary my diet somewhat:

http://www.amazon.com/Coumadin-Cookbook-
Guide-Healthy-Taking/dp/0966430832/ref
=sr_1_3?ie=UTF8&s=books&qid=1227638754&sr=8-3


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PAMELA0036's Photo PAMELA0036 Posts: 1,150
11/5/08 2:35 P

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Rescuer,

I know how you feel with the bruises! I have been doing them for 3 years and they never get easier and the bruises seem to come and go but I usually have one at all times. My lovenox therapy seems to be life long too.

Hope your test results come back with something good. I know the waiting game is hard.

Take care

Pamela

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It does help to have a team that deals with something that you have to worry about everyday glad you joined!!!

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RESCUER's Photo RESCUER Posts: 120
11/3/08 8:05 P

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Hi I can't believe I have found this message board. I had my 1st blood clot in 2003, I spent 3 weeks in hospital while my coumadin levels were being sorted out. I was on coumadin for 9 months with regular checks. In 2006 I had another DVT and PE, very scary, was put back on coumadin for the long haul. In October 2007 I started having severe headaches and in February 2008 my husband couldn't wake me up one morning so I was taken in hospital for loads of tests, I had another DVT while on coumadin! I was switched to lovenox twice a day and sent home after a week in ICU. While in hospital I also had an inferior vena cava filter put in. 3 weeks after discharge I was in tremendous pain in my hip, and back, I was admitted again with a retro peritoneal bleed. I was in hospital for another week and sent home on a lower dose of lovenox once a day for life. In July I had a repeat MRI of my brain for the headaches and there was a bleed in my brain which had not been there in FEbruary. In September I was walking my dog one night and had tremendous calf pain, shortness of breath and dizzy, I had an ultrasound the next day and sure enough another DVT.All the tests that have been done as to why I am getting them are negative, my hematologist referred me to Stanford University hospital in Palo Alto where I went last week but am still waiting for results. It does look like I am on lovenox shots twice a day for life though, you should see my bruised belly!!

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Welcome to all new members!! it's great to have you!!

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MUSTANG88's Photo MUSTANG88 Posts: 13
10/24/08 3:10 P

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Hello Everyone!

I was surprised to find this team but very happy that I have! I have been reading your posts and my thoughts and best wishes go out to everyone!

My story started innocently enough when I was out at a show with my friends on Aug 28th of this year. I was dancing to an Irish band on grass and in flip-flops. I rolled my ankle badly and ended up in the emergency room the next morning. After many x-rays they determined that I did not break anything, but had a grade II sprain. I left the hospital on crutches and in an air splint.

One week passed and I wanted another opinion on the ankle because I still could not bear any weight at all without excruciating pain and my calf seemed to be cramping (I figured due to the position my foot stayed in most of the day). I called the orthopaedics office and while I was telling the nurse my story, I happened to mention my cramping calf. She said that I should hang up and go immediately to the emergency room. I was stunned. She said that because of the trauma and the pain in my calf I should have an ultrasound to rule out a blood clot. I was shocked. I couldn't wrap my head around what I was hearing. When I told my husband what she had said, he left work immediately and brought me to the ER (I must admit, in spite of my protesting).

As I was sitting and waiting for my turn, I kept saying that I felt silly for being there. It was just a cramp and this visit was going to cost us more out of the copay insurance, blah, blah, blah. There was no redness, no swelling just a cramp. Even the doctor in the ER didn't think it was a clot, but decided to do the ultrasound anyway (thankfully!). My tune abruptly changed when I was in the ultrasound room and the technician kept going out and bringing more people in the room to get their opinions. Every other person she brought in asked if I had ever had a blood clot or any trouble with my veins. Oh boy.......

I was diagnosed with a DVT and was shocked at the lack of urgency to begin treatment (I was diagnosed at 3 pm and didn't get my first lovenox shot and coumadin until 9 pm). I spent the night in the hospital and it wasn't until I was released and the visiting nurses came in at night that I started to understand what the following 3 - 6 months would be like. I spoke to the nurse who gave me the wonderful advice and thanked her immensely.

Anyway, nothing like making a short story long (and you can read more on my homepage)...... I am a month and a half in on the treatment and there have been some issues but I am trying to deal with them as they come up. I wonder to this day about if the clot would have occurred if I was not as heavy as I am (although, I was on the pill when it happened).

Happy to meet all of you and even though I don't have much experience, I will be happy to help when I can and provide support!!!!!!

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HEIDIS2NDCHANCE's Photo HEIDIS2NDCHANCE Posts: 1,179
10/16/08 6:17 P

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Hi Pamela,
Wow! You have been through the ringer. I'm sorry that you have to go through that. Blood clots are horrible, scary things. Hopefully through SP and this group you can find the support you need to keep going. Good luck!

Heidi

***Heidi****

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PAMELA0036's Photo PAMELA0036 Posts: 1,150
10/15/08 4:38 P

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Hello,

My name is Pamela and I can't believe I found this group. I have been suffering with clots for the past 4 1/2 years and have felt all alone.

Well to introduce myself and to tell you my story which maybe long and I am sorry for that as it has been a long struggle.

I am 34 years old, divorced, mother of 4 children. My children are ages 17, 14, 12, and 10. I live in a rural community and do blame that somewhat on my situation.

It all started in March of 2004, I had just started going to school full time to be an RN. Before that I was always very active. So with starting school I had gained some weight and started to work out. After about 3 weeks of walking/running the treadmill My right calf started to swell when I worked out. Thinking this was maybe an injury I just slowed down. After a week I finally went to the Dr after the swelling didn't leave one evening. The Dr did an ultrasound and put me in the hospital on IV herprin for two days then home on bed rest and coumiden for another couple of days. Life went back to somewhat normal except my leg was still swollen and I couldn't work out. At this time I worked as a waitress and tried to continue. On September 3 I went to the dr with my leg being so swollen it was getting red. They told me I had cellulitis and put me on IV antibiotics. After 4 days it still didn't go down and it was turning black. The local dr (who is just a your normal family dr) sent me to a specialist an hour away.

This Dr. put me in the hospital right away were I stayed for 7 days. For the next 3 months I was in and out of the hospital 4 times. This Dr. ran test and told me I had the Factor V Lieden disorder. At least we knew why I was clotting. In November he finally said that there was nothing that he could do and sent me to Rochester MN.

Rochester ran tests after tests as the coumadin was not stopping my blood from clotting. My Dr in Rochester found out the reason my leg was staying swollen and there was always clots were was due to the fact that my right Iliac and femoral veins were fully blocked. They decided to do surgery to open them up. The surgery work, well for about a month I felt better. In Feb, I went back for a check up and it was blocked again. They did a venogram with plasty to open it back up. This began a cycle of every 3 months they would open it up. This was for a year while I was on Coumadin. Finally the dr changed my med to Lovenox shots twice a day (which I still do). I still continued to clot. Since then they have given up on the right as my body has developed me veins to help pull the blood back up from my leg. Now they work on my left as that one is starting to close too.

Last time I was there the Drs told me they don't know how much longer they can keep ballooning and stenting the vein as there is tons of scare tissue in the area.

I do have to say I have been lucky as I have never had a PE. Knock on wood!!!

Sorry this was so long and this really is the short version. There is so much more to tell I could right a book. If you want to know more please ask me.

Thanks for reading my story and I am glad to have found you!!!

PAMELA


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HEIDIS2NDCHANCE's Photo HEIDIS2NDCHANCE Posts: 1,179
10/9/08 4:46 P

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As far as getting back to exercise, I would agree with what has already been said. You know your body and know when it's time to push it. I don't know about the rest of you but I felt so crappy while on Coumadin. It was really good for me to exercise, it helped give me some energy that I felt like the blood thinners were draining me of.

***Heidi****

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Welcome to all you ladies!! Heidi I can totally agree with your story it sounds like mine but mine was for a whole month i could barely breath my doc thought it was bronchitis. So here i am for a month letting those clots get bigger taking stupid puffers when i had no bronchitis. But then the pain started and it took me going to emergency to find out what it was. They weren't sure if it was pneumonia or clots but the ct scan showed the clots. I feel great to know that they found out before i had a heart attack or worse.

As for the starting exercise well i guess it's different if you had clots in your legs than your lungs. It might be harder with the legs since that is what you mainly use. But it was a month after i got sick that i started exercising. You know they say that you should not diet when you are on blood thinners because if you mess with your diet your levels go up and down.

I also read that too much vitamin K is not good for you on these pills so ladies beware!! lol but I didn't care about the dieting thing I'm not going to sit around and wait!!!

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I had to be off of work for 6 weeks and was on bedrest so it was a while. When I went back to work it was very difficult because of all of the resting I had to do. So I guess I would say I started feeling somewhat normal after about 2 months after the diagnosis...
Judy emoticon

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GEAUXGIRL's Photo GEAUXGIRL Posts: 839
10/8/08 4:26 P

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Wow it's something to read these stories and to think how differently the outcomes could have been. I guess we are all just thankful and blessed to be here!
Question for you guys though, how long after your clots did you all start feeling "normal" again? I want to try to start exercising again but everytime I walk too much my ankles swell and hurt. So I know I can't do too much, too soon but I'm getting very impatient with that! LOL

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Hi Heidi
Those PE's are very scary aren't they not to mention when they move they hurt really bad...I feel blessed too to be alive and what a good reason to lose weight! I hope that we can become good friends.
Judy

Started this diet on 1/01/07 originally and have restarted it several times.
Hopefully today is the 1st day of the rest of my life.
10/04/08


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HEIDIS2NDCHANCE's Photo HEIDIS2NDCHANCE Posts: 1,179
10/8/08 4:15 P

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Hi there! My name is Heidi, and I'm 26 years old. I'm going to try and make me experience not so lengthy but forgive me if it turns out to be.

Last June, I was walking into a store and fell. I hurt my ankle so bad that I thought I had tore something. It healed up and felt better within a couple weeks. Then the beginning of July I flew to Georgia from Utah and then drove back in 2 days. The trip was 28 hours total. We only stopped to get gas, basically. About a week after that trip my right lower calf started to hurt. I just thought that it was a sore muscle, but after a couple weeks of it not going away and getting worse I started to get concerned. I asked my mother about it and she said I should have it checked because it might be a clot.

So I went to the doctor and basically said my leg hurts, it might be a clot, but I think it's just a sore muscle. He sent me for an ultra-sound and yep, I had one behind the knee. I was immediately put on coumadin, given a lovenox shot, and put on bed rest. Within 24 hours, I ended up in the hospital because I was struggling to breathe. After a CT Scan, they found out that I not only had the blood clot in my leg (which my opinion moved to my lungs) but I also had a PE in both lungs. This is really when I realized how serious my situation was. About 6 months before this my mom's sister had passed away because of a PE. I felt and still do feel extremely blessed that I've been given a "second" chance at life.

I was on coumadin for 6 months, but I'm currently not taking them. I was on birth control when the blood clots were found, and I can't take them anymore. While I was in the hospital, they ran a bunch of blood tests and found out I have Factor V Lieden. This is one of the reasons I'm losing weight. I'm trying to do anything I can to prevent me from having to take blood thinners the rest of my life.

Sorry that this was so long. But I'm looking forward to getting to know all of you.

***Heidi****

Formerly known as Heidinorge.


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10/8/08 1:45 P

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Hi I am Judy...I had a swelled leg that hurt so bad I could hardly work(nurse) and it wouldn't go down like when I had edema to both legs in the past. I went to my doctor and I had to practically beg them to do an ultrasound. She said well we will do one just to relieve your anxiety. So needless to say I was admitted to the hospital that day and after further tests found out I had multiple small blood clots in both lungs. I am very happy to still be alive. Thank you God!! I am of course still on coumadin and have been told I will be on it for the rest of my life which is ok with me. I feel some relief being on it. My son had been in a motorcyle accident about 8 years ago and he ended up with blood clots to bilateral legs up to his inferior vena cava(large vein in the chest). I have to thank God for his life too!! So I am happy to join this group and look forward to getting to know each of you.
Judy emoticon

Started this diet on 1/01/07 originally and have restarted it several times.
Hopefully today is the 1st day of the rest of my life.
10/04/08


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ROWENNE's Photo ROWENNE Posts: 11
10/8/08 12:11 P

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Hewwos!
I was rushed to the emergency room on 3/6/07 for swelling in my left leg. We initially thought it was due to a spider bite. (That would of been so much easier!)
But of course, I had 3 blood clots in my leg starting with the largest one in my hip. By the time they had figured it out I had lost most of the circulation in my foot. ( I had the "Mrs. Deeds" look goin')
My situation was a little bit different than both of you guys, but same diagnosis. I was not on any birth control at the time. No children to speak of either :-(
The only thing I had done differently before all this was have a minor outpatient surgery about a month prior. They could never find anyhing herditary or genetic to cause my blood clots. They also discovered that I am allergic to Heparin/Lovenox while I was in the hospital. I was there for 14 days total.

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GEAUXGIRL's Photo GEAUXGIRL Posts: 839
10/8/08 9:02 A

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Initially they said that I would only have to be on them for a brief period also. But now since they've discovered the APS, they think I'll be on them forever. :( I just can't get used to the bruising! I hate that!

Yea, I never really paid attention to those warnings either. Heck, I'd be on birth control for 14 years (since my daughter was born) and never had a problem!

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MELLBELL08's Photo MELLBELL08 SparkPoints: (11,678)
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10/8/08 8:55 A

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Wonderful!!! Yes my clots were formed because of my birth control but there were other factors as well like my c-section and my weight. it's funny now that I think of all the times I saw all the birth control commercials and all the warnings they say ...I never paid any attention to it. I kinda wishes I had now. The doc says that I am on the Coumadin for 6 months but I only have 2 more months left so I hope I will be off them in dec.

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GEAUXGIRL's Photo GEAUXGIRL Posts: 839
10/8/08 6:30 A

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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.

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MELLBELL08's Photo MELLBELL08 SparkPoints: (11,678)
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10/7/08 7:39 P

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Let's here all about you!!! From your ups and downs and highs to lows!!!

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