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ARNGWIFE2's Photo ARNGWIFE2 SparkPoints: (163)
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4/16/14 4:09 P

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Hi all. My name is Heather and I am 38 (almost 39). In 2001 I developed blood clots after a c-section. I was treated for 6 months and then taken off blood thinners. In March of 2010 I got married. Just two months later, I was laying in the back of an ambulance on my way to the hospital ICU. I had 6 clots in my lungs and many, many in my legs. Now, I am on Wafarin for life. This has forever changed my life. I have gained close to 40 pounds. I have to watch what I eat. I developed a lot of scarring and leaves me in pain. I guess that is me, in a nut shell

Just one step at a time and I will get where I need to be


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HRTBRKR2013's Photo HRTBRKR2013 SparkPoints: (6,317)
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9/22/13 2:39 P

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My Story ?
well I have been off and on Blood thinners for almost 23 years now.
Currently off of then Lost my Health Insurance in January and ran out of my prescription about the middle of February.
In May I was in the hospital was having trouble breathing they found I had multiple blood clots in my lungs. put me back on Lovenox shots 2 times a day and 5 mg of Coumadin daily. that lasted for about 3 weeks then they dropped me down to 3.5 mgs per day. and no Lovenox. ran out of script again about 3 weeks ago. No dr apt at the local poor peoples clinic or as I call it the Quack Clinic, till Sept 25th. I cannot afford my medicines or a doctor right now. Struggling to pay bills I am disabled and my Better half is unemployed.
Seem to be doing okay I am being really careful. I am still here today I pray God will keep me going and maybe he will heal me so I do not have to go back on the medicine.

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LINXOFFIRE1's Photo LINXOFFIRE1 SparkPoints: (1,872)
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8/9/13 12:54 A

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Hi all I am Angela I am 34 mother of 4. Thought i just had a cold went to the dr they gave me antibiotics 1 week later cold still there now they say i have asthma. so i get inhalers and a neutralizer. Plus steroids. week goes on still coughing sitting on my chair watching tv i start coughing really bad and my chest OMG did it hurt my kids call 911 and i went to the hospital me i have been there so many times for other things i thought what am i having a panic attack?

They hook me up to the EKG a billion stickers and CAT scan later i find a blood clot in my right lung the has done some damage to the lung. I stayed there for 5 days. Got put on warfarin that was fun take 9 no 11 no 10 no 7 no 9.5 every week i go in and get my INR's done 6 months of this they say i have to do.

Well that is my story now i am half way through and my boyfriend and i are sparking up. the kids are doing sparkteen so we are a big spark family. we eat right together and work out together. the support is great.

So if anyone needs anything from me please just ask me i will be honored to help.

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KMAYBERRY1 SparkPoints: (11,922)
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2/24/13 8:46 P

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My name is Karin and I'm in Texas. I have APS (Antiphospholipid syndrome) I've been dealing with PE's and blood clots for some time now. I finally have my inr leveled out but it changes all the time because of my condition (I can change nothing and all of a sudden it's way out of line)

LUANN7's Photo LUANN7 SparkPoints: (43,100)
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2/22/13 1:56 A

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LETS WELCOME kIMBERLY19732 ABOARD ARE TEAM. TELL US A LITTLE ABOUT YOURSELF

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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LILYBELLE12's Photo LILYBELLE12 SparkPoints: (8,129)
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1/20/13 4:13 A

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I have a genetic Clotting Disorder called "Protein S Disorder," which prior to the 1990's could not be easily Diagnosed. Before it was diagnosed, I had already had blood clots so many times I had lost count. Also my Mother, all her siblings, her mother and her grandmother all had Blood clotting problems. Both my Grandmother and Great Grandmother died of sudden Pulmonary Embolism. So, with that as my history I am now on Coumadin or some form of anti-coagulant for the rest of my life!

My journey begins with one step....and I am taking that step today!
Think positive, and life will be positive!
"What doesn't kill us makes us stronger." Nietzsche


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CLOOMIS2012's Photo CLOOMIS2012 SparkPoints: (119)
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12/3/12 12:07 P

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Hi...This is my story...it started the day after I turned 31. I woke up and everything was fine, shower, dressed, did my hair, took care of the usual baby things (he was 7 months, now 8 months) all was fine. Went into my sons room to wake him up for school...was fine. bent down to get his clothes out of his dresser...stood up...and thats when I felt like someone had stopped my heart. Breathing hurt so much. I laid down for a few minutes...it didn't make it any better. So I drove myself to the ER while my husband got all the kids ready for school. (we have 4 kids). The moment the DR told me I had a blood clot in my lung...I started to cry. Scared the hell out of me. All I could think of was "I'm not gonna leave my boys...ain't gonna happen!!" I stayed at the hospital for 5 days. Giving myself the injections wasn't as scary as I thought it would be. I had all the testing done...the only thing they could think of that could have caused it was the birth control pill I was taking. I will never take BC again. I can't help but wonder if the clot was there when I had gone to the doctors a few months ago with slight chestpains with a chest cold I had. They said it was pleursy (or however you spell it). Which is something that blood clots are mistaken for. Now I want to lose weight but I'm not sure how to go about doing it with the med I take. Any suggestions?

~your life is not a coincidence, its a reflection of you~


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AREYSMOM's Photo AREYSMOM SparkPoints: (673)
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11/27/12 1:23 P

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Hey everyone! I'm Drena and I am 21! A couple of months ago i found out that i had blood clots in my lungs :( scared me to death (well almost since I'm still here). Both of my parents died from pulmonary embolisms and well I'm not going out like that. I have a little girl who will be a year old next month, and i want to be around for her, and for her daddy. I am overweight and I am going to lose all the weight I need to by my 23rd birthday! Its a little hard to find good for me things to eat that don't effect my INR and its stressful going in every week to get it checked, either it is too high or it is too low. I'm not sure why I have the clots or how I got them. Apparently I have a multiple ones in each lung. One day I had a really bad fever and apparently a bad kidney infection, so I went to the emergency room, while waiting I was having some chest pain and they decided to check for clots based on my family history and low and behold there where some, I had to stay in the hospital for a week. I finally met with my specialist and they said that I could lower my risk by losing weight so here I am!!!! That's my story!

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ESKAMO2's Photo ESKAMO2 SparkPoints: (3,260)
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6/29/12 9:40 A

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HI everyone! I'm glad there's a group for support when dealing with clots. Here's my story: I had my baby girl one month (OMG!!). When she was two weeks I was diagnosed with a pulmonary embolism. I was hospitalized for 3 days. The Dr's don't know how a clot this big could travel to my lungs without me noticing ANY pain in my legs/pelvis. They were also shocked because I'm only 23. Anyways, now I am dealing with a PE and a newborn, on top of trying to lose weight while following the guidelines set forth by the specialists.
Thanks for reading!

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GLASS2ME SparkPoints: (2,499)
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5/19/12 8:46 A

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Hi everybody,
For me this is my second bout of DVT. I hate it! The first time was due to an accident in 1995, this time in January 2012 Dr. said it was due to inactivity. Went on vacation had a long plane then car ride. Can't seem to get my blood meds stable. 1st time the clot went from ankle to vena cava. This time it was in the back of my calf. I thought it was a bad charley horse, boy was I wrong. I stopped smoking, and now I can't seem to stop gaining weight.

_MIDNIGHT_ Posts: 290
5/12/12 1:35 A

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.

Edited by: _MIDNIGHT_ at: 8/12/2013 (04:55)
I'm a pole dancer trapped in a fat persons body.




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CARRIEMANN13's Photo CARRIEMANN13 Posts: 6
5/8/12 11:46 A

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Hi all, I'm from Ontario, Canada. I'm 36 and had spinal fusion surgery in January. If that wasn't enough, I was hospitalized last month with multiple PE's in both lungs. My doctors are investigating whether it was caused by the surgery or if I have a genetic condition. I've been trying to work out and lose the weight I gained after surgery, but I feel like I can't get my breath still. My INR is at therapeutic levels, so how long until I can breathe again!? I'm just so frustrated!!

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LOSINGFORME2's Photo LOSINGFORME2 SparkPoints: (690)
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3/26/12 12:59 P

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Hi, I'm from michigan and I had open heart surgery 2 years ago because I had to have my mitre valve replaced. I have been on Warfarin for the rest of my life because of having a mechanical valve. In october of last year my heart went into afibulation. I was scared but all is fine now. I am 65 years old and I would like to hear from other people out there who have had open heart surgery.

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KB9GEG SparkPoints: (3,572)
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3/18/12 6:10 P

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After having a DVT in December and bilateral PE's, I was able to get back and do my first 5k yesterday and a 6 mile trail run today. My times are not near what they were, but I feel I have turned a corner and on my way back to my running.
The PE's have cleared up (after a CT scan 2 weeks ago) and there is still some swelling in the leg. Hopefully it will go down as it makes the running challenging, I am still on 12 1/2 mg and the doctor said it will probably stay this way until July. My last inr was 2.5 so my next one is scheduled for a month.

I check this group every day and enjoy the stories and thoughts which help me keep on keeping on.


KIWIMUM812 SparkPoints: (13,554)
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1/25/12 5:05 P

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Hi everyone, I'm new to spark people and am still figuring things out. I just read thgh your stories. WOW some of you have had some really hard time

I had my first clot in Oct 2004. I woke up with a sore left calf but thought nothing of it as I had been at the gym the night before. I kept walking around and stretching it out until the saturday when I had a massage and the therapist wouldnt toch my leg because it was so swollen. I made a drs appointment for the tuesday as it was a holiday weekend. My gp took one look at my leg and sent me straight to the er for tests. The blood work came back positive for blood clots so they put me on heparin and I had a ultrasound the next morning which showed a clot from my groin to my ankle. I was discharged that night and had to go back as an outpatient for the next 2 days (including my 23rd birthday). I was recommended to be on anticoagulant treatment for at least 6 months. I agreed to participate in a drug trial which included extra monitoring scans where they found multiple pe in both lungs. After more bloodwork they diagnosed me with antiphosphilipid antibody syndrome and put me on warfarin for life. I was never told to stop my birth control. Everything was fine until sept 2006 whe my left leg swelled again and I could hardly walk. I called my p and got the first available appointment. He sent me for an ultrasound which confirmed a small clot behind my knee. This time I was told to come off birth control.

Life continued as normal. My husband and I found out we were expecting in June 2009 so I was immediately taken off te earfarin and put on twice daily lovenox shots unfortunately I miscarried at 14 weeks though so I went back onto warfarin. In Dec 2009 I went onto back onto twice daily lovenox so we could try for another child.In Feb 2010 we found out we were expecting twins :-) Everything was fine with the pregnancy until my 30wk check up when my bp was slightly elevated. My ob told me to come back in a week to have it checked as they were worried about preclampsia. That night I was nauseous so went to bed early, I was woken up at 4.30am y the need to vomit and then started having what I thougt were braxton hicks contractions. After 20mins the contractions werent easing so we called my ob and drove straight to the hospital (20 min) by the time I was checked I was already 5cm. They tried evetything they could to stop the labour but nothing worked so it was decided I would need c-section as baby a was breach. My bloodwork showed that I had preclampsia and hellp so thy gave me a general anisthetic instead of an epidural. My twin girls were born at 10am weighing only 3lbs each. After a 6 week nicu stay we they came home very healthy. I stayed on te lovenox while nursing and switched back to warafrin Jan 2011it took some time to figure out the correct dosage. I had been on 3mg before getting pregnant but eneded up needing to be on 4mg/5mg post pregnancy. I started making a real effort to increase my exercise and in Se my inr spiked to 6.0 so my heamotologist lowered my dose to 4mg. Everything has been fine since.

I'm excited to have found this group :-)

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AIMEESKWIRUT's Photo AIMEESKWIRUT SparkPoints: (397)
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1/18/12 2:15 P

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Wow! How SCARY about the brain bleed! I'm happy you are ok! I'm so very lucky that I have a very good doctor monitoring my blood levels and I go weekly for tests. I just had surgery yesterday so I'm working on getting back on the coumadin and off the lovonox shots. Those are horrible. I was also tested for the factor v liden but was negative on that and positive on the LA. I had a third test on the 6th so I'm waiting to hear if the third time is the charm or if I'm stuck like chuck. Nice to meet you :-)

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PLATINUMLIPPS's Photo PLATINUMLIPPS SparkPoints: (1,210)
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1/17/12 8:52 A

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Hi! I am sorry to hear about your medical troubles! You seem to be taking things remarkably well! Kudos! I only had one blood clot in dec 09 and I thought that was the end of the world! I have somewhat recovered from that and was on coumadin for a while when I started getting the worst headache! I had it for about three weeks and put it off as a sinus issue. I couldn't take it anymore and went to the E R. They did a ct scan and found a large bleed on my brain! Holy crap! I never expected that! I spent a couple weeks in the hospital and had a "burr Hole" drilled in my head so that they could remove most of the blood that had clotted. Ugh, it has been 15 months since that incident and I still deal with some horrendous headaches but otherwise I am ok there. I found out that I also too, have the factor V liden and I have been dealing with issues from the clot I had in my leg. Turns out I was being overdosed on coumadin and that is what caused the bleed! I went over this with all of my docs and finally decided to come off the coumadin! I realize that my risks of a clot are greater without it but my risks of another brain bleed are almost nothing now. I have to keep moving and still watch my vitamin K intake to keep my blood at safe levels. Now after joining SparkPeople, I feel like I am so much more in control! I need to lose close to 100lbs but I finally have the right mindset to do it! I love this program! I just wanted to say to you that you shouldn't be upset for losing those firsts because, if you hadn't you might have lost the rest! :) Stay positive!

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PLATINUMLIPPS's Photo PLATINUMLIPPS SparkPoints: (1,210)
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1/17/12 8:50 A

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Hi! I am sorry to hear about your medical troubles! You seem to be taking things remarkably well! Kudos! I only had one blood clot in dec 09 and I thought that was the end of the world! I have somewhat recovered from that and was on coumadin for a while when I started getting the worst headache! I had it for about three weeks and put it off as a sinus issue. I couldn't take it anymore and went to the E R. They did a ct scan and found a large bleed on my brain! Holy crap! I never expected that! I spent a couple weeks in the hospital and had a "burr Hole" drilled in my head so that they could remove most of the blood that had clotted. Ugh, it has been 15 months since that incident and I still deal with some horrendous headaches but otherwise I am ok there. I found out that I also too, have the factor V liden and I have been dealing with issues from the clot I had in my leg. Turns out I was being overdosed on coumadin and that is what caused the bleed! I went over this with all of my docs and finally decided to come off the coumadin! I realize that my risks of a clot are greater without it but my risks of another brain bleed are almost nothing now. I have to keep moving and still watch my vitamin K intake to keep my blood at safe levels. Now after joining SparkPeople, I feel like I am so much more in control! I need to lose close to 100lbs but I finally have the right mindset to do it! I love this program! I just wanted to say to you that you shouldn't be upset for losing those firsts because, if you hadn't you might have lost the rest! :) Stay positive!

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AIMEESKWIRUT's Photo AIMEESKWIRUT SparkPoints: (397)
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1/11/12 7:51 P

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Hi Shannon! I, too, have the LA. What a nightmare. When were you diagnosed? In the year I have had a formal diagnosis (through one of the BEST cancer centers in the US), I have learned A LOT about what it is. I too, had a horrible pregnancy. My boy was born at 28 weeks in 2007 and 10 years prior, my daughter was born at 22 weeks, passing away at 24. My oncologist says that I have probably had the LA for that long, just undiagnosed. Anything I can do to help you with this, I will. I'm not letting it stop me from anything but eating spinach and collard greens (I was a southern gal for a while). I'm glad your baby is well and nice to "meet" you.

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AIMEESKWIRUT's Photo AIMEESKWIRUT SparkPoints: (397)
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1/11/12 7:46 P

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Hello all! I am a 35 year old single mom who was diagnosed with Lupus Anticoagulant in February of last year while doing routine pre-surgical workups. 6 months prior, I had a PE after a knee surgery. I am on warfarin for the rest of my life and want to meet others who are on the same medication and have that godforsaken Vitamin K problem too. I LOVED my greens but now, a year and a half after I started the warfarin, I've found my balance with other foods. Looking forward to meeting you!

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TASHANCARRION's Photo TASHANCARRION SparkPoints: (6,984)
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1/9/12 8:59 A

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WOW, Shannon thats horrifiying! Im glad your better. and the little one will hold it against you. I promise. :-)

*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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SHANNONSPRING's Photo SHANNONSPRING SparkPoints: (16,159)
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12/24/11 8:37 P

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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.



Mom to baby Yusuf


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TASHANCARRION's Photo TASHANCARRION SparkPoints: (6,984)
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10/7/11 9:06 A

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ZENMOM19, Hello and Welcome! I am so sorry you missed out on the firsts. Thats tough. But you have a jump start on everything. you know you gotta do this for your babies. You will do great. Be sure to read articles and join us in any and all topis. if you have any suggestions for the group we would love to hear them.

take your time on everything on SP it is overwhelming at times but stay focused and you will be fine. any questions just ask.

Have a wonderful day and a great weekend.



*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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ZENMOM19 SparkPoints: (860)
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10/4/11 4:41 P

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Hi, All...

This my very first forum post on Spark People. The site is amazing, but I've taken a week to get up the courage to actually post. It is a little intimidating...

In early August of this year, I was experiencing some pain in my right leg as well as some shortness of breath. I had had these types of symptoms periodically throughout my life, but I always attributed them to a pulled muscle and my asthma. My leg was really really sore, and I was out of refills for my inhaler, so I made an appointment to see my family doc for later in the week. It was extremely hot here in Missouri, and I work on the sixth floor of a building with no air conditioning. After my trip up the stairs one morning in 100-degree heat, I began to cough and my chest hurt. I could not catch my breath. I called my doctor's office to see if I might be able to be seen earlier so that I could get that inhaler.

The next day I went into my doctor's office, and he sent me immediately to the hospital for tests. They revealed I had four clots in my right leg and three in my lungs. I had been joking around that this was all a lot of fuss for a pulled muscle and asthma. It was pretty evident by the techs' and nurses' faces that I was in pretty serious condition. After countless tests, I was finally diagnosed with Inherited Thrombophilia. I have inherited both the factor V Leiden as well as a prothrombin mutation. (We are a "lucky" few, so I was hoping to find other mutants to swap stories...LOL...) Needless to say, I will be taking Coumadin for life.

So, during my two weeks in the hospital, I missed out on a few firsts... My daughter's first day of kindergarten; My son's first football game; My baby daughter's first word. I decided that I wasn't willing to miss any more, so I decided to change what I could in my life to beat the statistics I could beat and deal with the others in the healthiest way possible.



"No matter where you run, you just end up running into yourself."
--Breakfast at Tiffany's (1968)


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TASHANCARRION's Photo TASHANCARRION SparkPoints: (6,984)
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8/26/11 9:37 A

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I was diagnosed with APLS/APS in 2005. I had 3 blood clots, one in my left lung, one going into my left kidney and one coming out of the same kidney. I went to a wedding and we were dancing and drinking so i though i jsut pulled a muscle. Well i had the intense pain in on my left side from my ribs to my shoulder. It kept getting worse so i drove to the hospital and thats when they found it. I was in the hospital for about a week. It was horrible. I am taking Coumadin for the rest of my life now. I am taking 3mg tue-thrus, sat and sun and taking 2.5mg mon and friday.

*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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HZLEYES1969's Photo HZLEYES1969 Posts: 18
8/12/11 2:03 P

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Hello everyone, I was hospitalized in 2005 with a pulmonary embolism which ofcourse I waited too long to go to the hospital, so I ended up causing damage to my right lung, I'm lucky to be alive and FINALLY my doctor thought that maybe there really was something wrong with me and my complaints since I was in my 20s of stiffness, daily pain, fatigue, trouble sleeping, weight gain/loss was not because of my busy life and all in my head. I was finally referred to different specialist which finally were able to diagnose me (after being missed diagnosed and kept getting worse for over a year) I was told that the Antiphospholipid antibody syndrome (connective tissue disorder) was what caused the blood clots and I am now on blood thinners for the rest of my life.

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MACKANDME's Photo MACKANDME Posts: 6,103
8/3/11 2:16 P

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Well I joined this team but there really doesn't seem to be any activity. I will just say that since i started experiencing pain in my chest again I started taking aspirin.

~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 (1748–1832)
A dead cow or sheep lying in the pasture is recognized as carrion. The same sort of carcass dressed and hung up in a butcher’s stall passes as food. —J. H.
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White Phoenix


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FNDNEWME Posts: 2
6/29/11 11:30 A

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Hello All!
I've had a lot of drama over the past year which has contributed to me putting back on 30 pounds (after being 20 pounds from my goal -- sigh). Not good! I'm a stress eater and am learning to know when I'm truly hungry.

In February 2011, I was hospitalized with 6 blood clots (one in my calf, one in my thigh and 4 in my lungs). After 6 days of blood thinners my blood was therapeutic (INR 2.0-3.0) and I was released from the hospital. With instructions of blood thinners for 6 months to a year. By the time I returned to work I had gained another 15 pounds (bringing my total up to 30).

I finally decided (May 20, 2011) that instead of looking at the 50 pound weight loss that I would commit to 90 day challenges to reduce my caloric intake to no more than 1,200 calories and see what that does. Then after 90 days, do it again. That way I don't get frustrated or demotivated. Smaller increments tend to work better for me.

I've been losing weight (21 pounds now) and the reduced calories and weight loss have affected my blood levels. Since my journey started 35 days ago my blood has gone from therapeutic to an INR 1.2 up to 7.0 and every where in between. So frustrating!

My doctors have not been able to figure out why I threw clots and now feel that I should be on blood thinners for the rest of my life. I'm concerned that as my blood fluxuates that I'll lose my motivation and gain again... got to deal with this now!

Looking for a healthier me!

BRIAND135 Posts: 1
6/24/11 8:39 P

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How's it going, my name is Brian and I'm 24 now. I was blown up and injured in Iraq in July of 2009 and went through a ton of surgeries on my leg/butt/back and had a colostomy on top of it all. As soon as I was able to move around a bit they sent me to do some physical therapy and the evening of the first session my leg swelled up, turned red and wouldn't stop hurting.

Spent around a year and a half sitting in a bed not really moving, eating really badly and gained upwards of around 80 lbs. This April I was cleared to exercise again and was taken off coumadin (the blood clot is massive and they think has little chance of moving). From about May 8th or so I've lost somewhere around 25lbs and it continues to melt off. People I work with want to know what I'm doing so they can lose weight too but, it has been one of the most difficult times of my life. I go to the gym twice a day, I eat healthy, take supplements (workout shake/vitamins), stopped using tobacco, stopped drinking, only drink water, and walk everywhere during the day (which ends up being somewhere around 5-10 miles). Everything I do makes my leg and my butt (Iraq injury) hurt like hell, but I refuse to let some stupid clot run my life. Doctor also says that by constantly using my leg it's creating more little veins for blood flow potentially helping me in the long run.

So .... TL;DR version: I got hurt, got a clot, got fat, got mad, got active, getting thinner.

COWGIRLUPCOS's Photo COWGIRLUPCOS SparkPoints: (557)
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2/9/11 8:47 A

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My name is Lori and I recently joined Spark People. I had a stroke in Dec 2009 while 7 months pregnant that was caused by a blood clot in the brain. It was discovered after I had my son two months later that I had a hole in my heart that caused the clot. Last year I spent a good time in the doctors and taking care of my two kids and husband. Over the last decade I've put on 100 pounds and I want to get rid of it so I can be healthy and a good inspiration to others around me! I was on blood thinners during and after my pregnancy. I took daily injections until I had my heart surgery 6 months ago to repair my hole in my heart. I still take a baby aspirin which I will take for the rest of my life. I'm excited to be here and look forward to meeting more folks online!!

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RJANE23's Photo RJANE23 SparkPoints: (877)
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11/5/10 11:41 P

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Hey everyone I'm new to this site but thought i would share my story, i was in my last 2 weeks of boarding school when i started having really bad back pains,i didn't want to get it checked out because a week later it would be my 18th birthday, and it was my last week with all my friends before, after 7 years together, we would all have to go our separate ways. However, one morning i woke up barely able to walk so i was sent to the school infirmary and they thought i was trying to get out of sports day, gave me 2 painkillers and sent me away in pain. I had to have 2 people helping me to walk for a couple of days & was forced into some physical activity when i clearly couldn't do any.

It wasn't until the day of my 18th birthday, i woke up and my entire right leg had was completely swollen. I booked an appointment and was rushed straight to hospital. I spent 10 days in hospital, missed my leavers ball at school and all the leaving things i had planned with all my friends. Turning 18 in hospital was a shock as well, being used to my mum dealing with anything big like this, suddenly the doctors were talking to me, i hated it all i could think about was missing my leavers ball.

I was totally gutted. On the brightside, it made me realise how many friends and how much they all cared for me as every visiting hour someone different came to see me. My mum stayed with me as well, slept on 2 chairs for 9 nights.


The hospital are unsure as to what caused my DVT i am currently on a 6 month course of wolferin. They believe it was due to either 'the pill' or that i have some sort of blood deficiency.

I came on here because, when i got out of hospital i couldn't move for 2 months without the help from crutches and still can't really go running or anything without my leg causing me to stop. I'm a huge swimmer and tennis player so i'm used to doing a lot of sport, i just want to become fit and healthy again, but haven't yet found the motivation. Hopefully i will on this site.

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BLUSKYS's Photo BLUSKYS Posts: 140
7/12/10 7:24 P

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Hi everyone. Thank you for sharing your stories with me. I am new too this site and will be taking coumadin for the rest of my life. I had a stroke in 2007 (28 years old). Since I had no risk factors, the stroke was hard to diagnose. The clot in my brain, lead to dead brain tissue, resulting in a coma and I almost died. I had three brain surgeries to remove and replace my skull and repair the wound. I had a heart procedure last April to close the hole in my heart. It has been about 2.5 years since my stroke. I am finally feeling healthy enough to chase my kids and stay up late. I returned to teaching in 2008. I am working on being more active and have the energy to support this plan.

BEANPARKER's Photo BEANPARKER Posts: 19
6/21/10 5:45 P

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Wow you all are so young to have to deal with this!
I am 60 and retired. After retirement I moved way less and developed a very bad hip, in fact I was scheduled for hip replacement surgery, but due to the blood clots have to postpone that. About two months ago I sprained my ankle and moved even less. One day, May 27th my leg was hot and stiff so I went to my Doc. She took one look and said go directly to the ER. There they found I had a very large clot in my right leg and several clots in both lungs. I thank God they were able to treat me and get me on the blood thinners. My levels were good the first two weeks but Friday it was up to 6.5 so they are working at adjusting it. I feel this was a wake up call for me to get healthier in my old age emoticon
My sister in law pointed me to SparkPeople and here i am. I am trying to follow the nutrition and exercise advice. I have been tracking every day. So far I lost about 15 pounds since the hospital.
Thank you all for your efforts in helping others with this problem.

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LISADAWN88 Posts: 6
6/2/10 7:06 P

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I just joined this group today. I am 39 and recently had a blood clot. I also have a factor V defect. This time they are keeping me on the coumadin for at least 6 months. My ankle and leg that I had the clot in are still swollen and it really bothers me. It comes on during the day. My Dr. says it is salt so he recommended a low sodium diet on top of the low vitamin k diet. And he has me on Lasik. I am having a hard time figuring out my diet. My INR is all over the place. I love veggies and I havne't eaten that many but i am still not thin enuf. I even had 2 margarias over the weekend. LOL
The last year of has been so very stressful for me. A divorce, two teens, a move across country. I am in an awesome supportive relationship now but these health issues are getting to me. Not to mention I have gained some weight during all this.
Anyway, that is my story in a nutshell. Hoping to find encouragement and ideas here. thanks for listening.

JPVALPO24's Photo JPVALPO24 Posts: 782
5/4/10 2:21 P

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Hi, my name is Julia. I joined this team bc I had a major blood clot 2 yrs ago. I fell and broke my foot, I really think it had to do with my weight when I fell, the main joint and I actually was waiting to hear my ankle break. Thank God it didn't break, but I broke the main joint in my right foot. I actually walked around on it for 4 hrs before I decided that it really hurt bad. So, in a cast for 8 weeks. About 2 weeks after having it on I got menangitis and spent 7 days in the hospital over the christmas holiday (worst christmas ever when your family is leaving to go home and celebrate and that was the moment it hit me, I had been here for 4 days already and finally lucid, so of course the tears followed).
So after the cast came off I noticed that my leg was really swollen, it never really hurt which is the amazing part. I went on to have physical therapy where they massaged the "fluid" out of my leg and I did strengthening exercises to help my foot and ankle. Well, 4 weeks into therapy the dr went to do the massage herself and she said when did you see the foot dr last. I told her that I had just gone that morning and she said no something is wrong bc your ankle should not be hot like this. I went home and called them and they sent an order for a Venus Dopplar (I am sure many of you are familiar with this) and I had a blood clot 2 feet long in my right leg. I was immediately hospitalized and they didn't want me to move. I was actually laughing bc I said do you have any idea what I have been doing lately. So the luvenox shots came and after realease the coumadin started. i was in the hospital for 3 days.
I thank God that they found it when they did bc I was scheduled for a full hysterectomy four days later, the day before my 29th birthday. The Dr said that if I would have had surgery I would have definitely thown a clot (bc pelvic surgery is a very high rish procedure for blood clots) and died the day before my 29th birthday. So, God spared my life twice withing 6 months with the menagitis and blood clot.
I am on coumadin for life bc of the extensive damage the clot did to the veins while it was in my leg. I suffer from bad pain in my leg and foot and swelling. I ended up getting a Greenfield filter about 9 months later to catch any potential clots. I finally had my hysterectomy and life is getting better. I gained most of the weight that I did when I broke my foot in Dec 07 and until march 2008 when they found the blood clot. I was on my back during that whole period btwn the cast, spinal tap, and blood clot. I am here now and intend to lose 15-20lbs more. I have lost 60 prior to joining spark. I just found a medicine Lyrica which takes away alot of my leg pain and I am just starting to walk on the treadmill without pain. I was doing yoga before, but it really hurt my back. I did learn alot of helpful stretches though. I look forward to interacting with all of you!

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WINDDANCER2010's Photo WINDDANCER2010 Posts: 105
4/26/10 12:10 P

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Hello. I am new to this spark team and know that my story is being posted long after the rest but thought I would share it anyway.

I went camping in August of 2006. We would always go out on the boat and we would all try to do one thing or another behind the boat. This year I decided to try and one ski. My aunt told me to ook the top of the rope over the top of the one ski as it would help steady it as I tried to get up. I tried about 4 times and was exhausted and never got up. I told them that I would try one more time and when I tried to get up I couldn't and let go of the rope and it got caught around my foot and inside the boot of the ski. They thought I was still trying to get up since the rope was still attached to me. They pulled me under and I couldn't breathe. I was finally able to get it off and when I came up the top layer of my foot was gone from the rope. They took me to the hospital and they half casted it to keep it immobile. After 2 weeks I began walking again and it looked like it was starting to heal.

After about another week it was really sore and was hot to the touch. I went into the ER becvause i could hardly put weight on it. The doctor hospitalized me for 4 days with IV antbiotics because he said I had an infection that was spreading to my bone in my foot. I went home on a Tuesday and was able to start walking a little bit. By Friday I was back to limping and the pain was severe in the back of my knee. I had a followup appt scheduled and the doctor told me that it was most likely muscle pain from my muscles being unused for a time. I went home and took meds for the pain.

By Saturday evening I was crawling back and forth to go to the bathroom and the pain had moved to my top of my leg next to my groin. I was in such severe pain that I crawled to my car and drove myself 20 miles to the nearest ER. After a few hours and lots of test the doctor told me that I was being hospitalized for a blood clot that was the size of a golf ball. After a full body scan I was informed that I had over 100 blood clots throughout my body. I was on birth control and hormone injections for a hormone imbalance and they thought that plus the fact that I smoked was the cause of all of it.

About a month later I was tested and I found out that I have Factor V Leinden and will be on coumadin for the rest of my life. There is a positive to this and that is that I quit smoking. I struggle all the time with what to eat because my levels change easily and how to go about dealing with this but I just take one day at a time and thank God that I was able to live through this. emoticon


"Give thanks for what you are now, and keep fighting for what you want to be tomorrow." ~Fernanda Miramontes-Landeros


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_MIDNIGHT_ Posts: 290
4/7/10 4:13 P

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Edited by: _MIDNIGHT_ at: 8/12/2013 (04:54)
I'm a pole dancer trapped in a fat persons body.




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TXCRICKETT's Photo TXCRICKETT Posts: 68
4/7/10 3:37 P

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I am beyond thrilled to find all of you. 2 years ago I caught whopping cough on a plane coming back from Hawaii. After 1 week home I got so sick I could not breath, and had trouble standing and walking. I went to the doctor and she wanted an MRI, but they couldn't do it until the next day. So we went home and back the next day. Lying down was beyond painful. They left me half in the machine when finished and I started spasming in my upper back and I felt like I was going to die. It was very frightening. The Radiologist was looking at the films when I yelled for help. I had four nurses on me immediately. They sat me up and put ice on my back which helped as I cried and they went for my husband. I don't cry easily. The doctor came in and said you are going to the hospital by ambulance now. It was across the street and my husband didn't understand why we couldn't drive. I had bilateral PE's. The one on the right was extremely large. I knew it was a miracle I was still alive, and that that could change at any minute. I felt like some how I had missed the email. Hey kid, the gig is up. As a nurse I have had two PE patient's die in my arms, so I was pretty impressed that God had to be involved in this. At the hospital I had a hospitalist doctor who was a moron and wanted to send me home with my PT/INR's still in the 4's. My sister was a ICU nurse at the hospital and called a ICU pulmonary specialist onto my case. She saved my life. He comes in and says I have a sneaky suspicion about you, and no you are not going home. (Like the moron wanted to do.)Dr.Brown runs a test and comes in the next day and informs me that I am Factor IV Lieden positive and I will be on coumadin for the rest of my life. Surprise!He was amazed I hadn't thrown clots before. No children and no BC pills (I think that saved me.) I have struggled for the past two years with trying to diet and maintain a coumadin regiem, with having to limit Vitamin K foods. This is really tough, and made me very angry because dieting was hard enough, let alone make it mandatory and mess with all my vegies which I love. Nice to have found some common folks dealing with the same issues.

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MISSIONTOMARS Posts: 1
12/29/09 12:32 A

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I was 18 and headed for college. I had an early flight out of O'hare and was headed to Daytona Beach. I had a layover in Charlotte, and that's were things started to go wrong.

It was a Wednesday, and orientation had been moved due to Tropical Storm Fay hitting Daytona, yet I kept my travel plans the same. I said goodbye to my parents and siblings at the airport and told them I would see them in December. The first flight was almost 2 hours and I slept through the entire flight. When I landed in Charlotte, I felt as if I had pulled my left thigh muscle. I thought that maybe I had just slept on it funny. I had pulled this before from dance and softball, and it felt the same way. In Charlotte, I walked around and stretched it out.

From Charlotte to Daytona it is only a little over an hour flight. Once again, I slept. Got off in Florida and all seemed fine. The school would not allow me to move into my dorm until the next day due to the storm, so I stayed in a hotel and actually met up with my room mate. We went out to eat and to a store in town and every time I would stand up from sitting I would get a terrible pain in my left thigh. I kept telling myself it was just a pulled muscle. I did not want to go to the ER and have them tell me that.

As evening fell, the pain got worse. I took some IB Profin and put ice on it. By midnight that night, I could not walk or stand on it. I decided to go to the ER. By the time a dr. saw me it was 7 am. By the time I was diagnosed, it was about 9 am.

I was placed on Heprin and was in the hospital for five days. I missed all of orientation and the first day of class. For about two months I had a lot of problems walking. I could only walk for five minutes or so and would be in so much pain. My leg was swollen so bad. My ankle was the size of a soft ball for four months.

I was on Cumadin for a year. I still have swelling (not as bad as before...thank goodness!) and pain in the leg every now and then, and the drs. say that loosing weight is the only thing that can help it now.

Edited by: MISSIONTOMARS at: 12/29/2009 (00:34)
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CHICKIELEE's Photo CHICKIELEE Posts: 6
12/8/09 11:13 P

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Hi all! *waves* I'm brand spankin' new here so if I mess something up just let me know. :)
I'm a 34 year old single mom. In April '08 I had sharp pain in my ribs on the left side when I took a deep breath but otherwise felt fine. One night I decided to go to the ER, expecting a little plurisy. It turned out to be pneumonia and a PE! I spent a week in the hospital, still not feeling badly. The doctor told me he wanted me walking, so I'd take my heparin IV pole and heart monitor to the parking lot so I could smoke in my car! I went home for 11 days and wound up VERY sick after my PCP took me off of all of the meds for the pneumonia. *rolls eyes* So I drove myself to the ER with, as it turned out, 104 degree temp. I still had pneumonia AND the PE! This time I was really, really sick. Scared, in fact. So I stayed in for another week on 24 hour heparin. Used that week to quit smoking. Eight months now! :)
So now I've found out I have Lupus Coagulant Syndrome and Factor VIII positive. Apparently it's genetic (my dad suddenly dropped dead from a blood clot at 56) and I'll be on lifetime Coumadin. Right now it's at 5mg/day but will probably go up because of my weight loss efforts - more steamed broccoli. Mmmm. :) So, thank God for my PE. It could've just as easily been a stroke or heart attack at 33, leaving my son with only my mom. I've had my wake up call, for sure. So that's me! Nice to meet you all! :)

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UNDERASUNNYSKY's Photo UNDERASUNNYSKY Posts: 10
9/15/09 4:42 P

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Hi everyone-
I thought I'd share my story quickly with you. I'm 23 and suffered a back injury a few months ago. I fell on my bum and received a massive shock up my spine which caused a large amount of compression to my back. I was off work for a couple of months and wasn't really getting better. I was experiencing *spectacular* headaches which eclipsed any back pain I was having at the time. I was in so much pain with these headaches that I would be crying on the floor of the shower trying to calm my pain with the heat of the warm water because the heavy narcotics I was taking wouldn't calm the pain down. My husband would have to pick me up, put me to bed, turn off all the lights and keep the house silent for me to be able to stand these headaches.

I started seeing a physiotherapist which helped a bit and was finally able to go back to work. I went back for one day and came home exhausted and went to bed at 7:30 without eating dinner. The next morning I woke up and was getting ready to go out when suddenly the entire left side of body started to go numb. It started in my left hand and slowly spread up my body into my arm, down my chest, down my leg and finally to my face at which point I couldn't speak because half my tongue was numb. My husband rushed me to the hospital and after a battery of tests I was diagnosed with thrombosis of the right superior sagittal sinus which means I have a blood clot in a major vein on the right side of my head which keeps the cerebro-spinal fluid from draining back to my heart to be cleaned and reprocessed. The numbness continued for a week of being in the hospital on 24 hour heparin.

Over the week in the hospital I started to recover and was eventually able to go home while taking tinzaparin (low-molecular weight heparin) and eventually warfarin. Since I've been out the hospital (4 months) I've had no symptoms except headaches and feel much better. I'm waiting for an MRI currently and am doing all right. Apparently this type of blood clot is very rare but is common in the grand scheme of blood clots, particularly in young, overweight women who are on birth control.

Right now I'm just working on losing weight, rehabilitating my back and rebuilding my health. I need to lose 80 lbs to get back to a healthy BMI and am working to do so. I look forward to reading all your posts in the future and working with you all to lose weight together.

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PAMELA0036's Photo PAMELA0036 Posts: 1,150
3/26/09 12:27 P

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I have always been down on myself for my health, but after reading your stories I feel I am one of the lucky ones. My disorder started in March of 2003 I had been in school for a year after working full time in an active job as an CNA and was starting to gain a little weight so I started going to the gym and walking on the treadmill everyday. After about 3 weeks of working out my right calf swelled up and was painful when I walked but after working out the swelling and pain would go away. I thought I just pulled a muscle and figured I would walk through it. After 4 days of this on evening I noticed my leg was still swollen and really hurting so on monday I called the dr and got in. He did all the physical tests and decided to do an ultrasound. He then put me in the hospital with a blood clot in my calf, I was in for 3 day and then home on bed rest for 2 more. After that I was able to be up as tolerated and was told to take coumadin for awhile.

Over the next 5 months my leg continued to swell and was painful this every activity. Our county had there fair in August and my children show so we are there for 4 days all day with lots of walking. During this time my leg continued to swell. I went to the doctor cause I noticed that my leg was red and warm to the touch. The Dr put me on IV antibiotics telling me it was cellulitis. After 4 days of meds and me taking it easy it would not go away. The local Dr then sent me to a specialist an hour away. He put me in the hospital right away. I got better and was sent home. For the next 3 months I was in the hospital 3 more times for the same issue. The dr there decided that he wanted to send me to another specialist in Rochester MN at the Mayo Clinic.

Going to the clinic was scary since the Mayo has the rep of being for the really ill people. My dr there was very kind and I loved him instantly. He ran multiple tests. Finally we sat down to talk. He told me I had Factor V Leidin disorder. He also told me my right femoral vein was clotted shut from my ankle to my abdomen. They wanted to do surgery and clean the vein out. My surgery was scheduled for Dec 3. I went in and everything seemed out. I went home but didn't see much change. After 6 weeks I was back for a check up and it wasn't good. The leg was clotted shut again. They put me in the hospital on thrombolicits to get rid of the clots. I was in ICU for a week. All seemed ok and went home at this time they changed my med to Lovenox shots twice a day. Over the next 2 years I was in and out of ICU as my leg kept closing. Finally the Dr said they could not do it anymore since there is so many stints and scare tissue and by this time I was really getting by ok with it, I had learned to live with the pain and lack of mobility. I was still to go back for check ups every 3 months.

Next time I went they noticed that my left iliac vein was starting to clot shut. So here we go again. This went on again till this past Nov when they decided they could not do anything for it again. This last time it was not able to be opened up. The Dr sent me home with a plan to get moving and try to have my leg develop arterial veins like my right one had done. Also I was back on coumadin and a multivitamin daily to regulate my blood. So far all is ok. I use to live with my disorder controlling me but lately I have changed my life to I control my disorder.

I have never had a PE and feel lucky that I haven't even though I know it could happen at any time also was lucky to not have a clot during the time I was on birth control or during any of my 4 pregnancies. After my last child I had my tubes tied so am lucky there. The only thing that bothers me is I may have passes this on to my children. At this time we have not tested them but if a problem arises were they my need to find out we will do it.

I wish the rest of you alot of lucky!!

Edited by: PAMELA0036 at: 3/26/2009 (12:32)
PAMELA


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POPSYKLE's Photo POPSYKLE Posts: 85
3/25/09 9:38 P

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It was September 27th, 2006. I was active duty Air Force. We did PT (physical training) every Wednesday as a squadron. This day, I made it a quarter of the way around a quarter mile track and was short of breath. I walked jogged my 1 1/2 miles at the urging of my Lt. Col.
The next day, my chest was sore and I thought it was from breathing so hard at PT the day before. Friday it was a little worse. Saturday night, I started getting sharp pains on my lower right side, in the back under my rib cage. Sunday night - I slept sitting up as it hurt so bad to lay down. If I so much as twitched, I would wake up in tears.
Monday morning, I called to see the doctor. I got an appt for 1030 so I reported for duty at 730. By 1030, I could barely get into my truck to drive. I got there and was in tears. I couldn't sit. It hurt to breath. It was embarrassing having all those people see my like that.
My doctor sent me for x-rays. I had to lay flat on my back for them and it was worse than childbirth w/o pain killers!!! He gave me a shot of motrin in the back, a prescription for vicadin, and sent me to drive myself 30 miles to the hospital for a blood test and 40 miles home. That night - it wasn't any better. The pills took the edge off, and I made an appt to see the doctor again. At 8a, my husband called and said my doctor was blowing up the phone trying to get me. I was to go to the clinic ASAP and was being transported via ambulance to the hospital.
Turns out my Ddimer test results were 2495, with normal being 200! I was admitted and they found 20 PEs, with 1 clot almost completely cutting off my right lung.
I spent a week in the hospital with a dalaudin drip for pain and coumadin therapy. I came home and a week later went back in with a collapsed right lung and more clots.
I spent another week in the hospital. They finally did a thoracentisis and pulled 24 fl. oz. off my right lung.
The culperite to it all -- Ortho Evra birth control. I now have to report myself as estrogen allergy. I take 6mg of coumadin daily. If I want to have a baby, it will be daily Lovenox injections.
It was also found later that I am Factor V Leiden positive.
But, I am alive and here today. My doctor is the leading pulmonologist in the Antelope Valley and says he has never seen that number of clots in a person that was alive and moving around. I am thankful to still be doing that as I would have left behind a 7 year old and a 1 year old sons and my super loving husband that was there for me through it all.

"The only place Success comes before Work is in the Dictionary"


1/27/10 - 197 lbs
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MICANDREU's Photo MICANDREU SparkPoints: (34,461)
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2/22/09 12:14 P

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It is truly never easy to be vunerable, and for that I am grateful that you shared with this group, as well as all the others.. Thank you...

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Woman are like Teabags, you never know how Strong they are until they are in Hot water.
Elinor Roosevelt


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GOLDEAGLE143's Photo GOLDEAGLE143 Posts: 135
2/22/09 11:59 A

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I was 46 when I was first diagnosed with a PE. I remember to the day exactly when I felt out of breath. A girlfriend and I had gone to lunch, and on the way back to the parking garage, I noticed being out of breath. I had a really hard time with the stairs. I thought it was a summer sinus infection that didn't get better. I was wrong. It was August, 2002.

Over the next couple of months, I got weaker and weaker... to the point of not being able to carry my laptop to work. A co-worker commented on me limping. I didn't realize that I was.

My breathing got more and more labored. My husband called his brother (who is a doctor) and told him what was going on with me. He had a series of questions to relate to me. The last question was "Ask her if she's sick to her stomach." I was. He said "Get her to a hospital. Her core being can't handle it anymore." He did, and they found I have multiple PE's and DVT's. I was like the walking dead. I spent the next 10 days in the hospital, having a TPA (clot buster) on day 5. They said it could cure me or it could kill me. I didn't even hesitate when I told them to do it. They took me back to ICU.

I looked like I had the stigmata. Every place they had poked me the last few days broke open. I was embarrassed and asked my husband to go home and take care of the kids. I didn't want him to see me that way. He refused. The TPA worked. I was sent home after another 5 days, but had to have oxygen and was on coumadin for the next 5 years.

Last year I was diagnosed with a lung condition similar to tuberculosis. The pulmonologist took me off coumadin. I have to wonder if I had stopped taking coumadin sooner, if it would have headed off this other condition.

My leg still hurts some where the DVT was, but I am careful to work the leg almost every day with yoga. My weight is down 10 pounds, and I have another 60 to go. I feel like losing some of this will put less pressure on my veins and give me less of a chance of reoccurence.

Edited by: GOLDEAGLE143 at: 2/22/2009 (13:19)
"I think I can, I think I can, I think I can..." The Little Engine That Could

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MICANDREU's Photo MICANDREU SparkPoints: (34,461)
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2/20/09 3:19 P

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May of 87, was the first DVT and PE. I was 17. I did six months anti-coagulant therapy.
I was doctor advised is treatment for, cramping and such.. (Birth Control). It was only part of the story. Today I have to tell them that I am Allergic to birth control when I go to an ER or have a doctors appt.

May 96, was the second episode and, not the last of the clots,additionally; it was the beginning of long term blood thinners...

In 97 and 2000 I was blessed to have two healthy children. they are 8(girl) and 11(Boy). Yes they are both healthy. I have been blessed.

In the end of the second trimester, I started taking 2x daily Lovenox shot. Until, I gave birth in 97.

New Years day 2000, in the ER, I not only was told that I was pregnant, but there was a DVT. Thoughout that pregnancy I was on Lovenox shots.

Also, it wasn't until 2005 that the genetic testing came back that I am presisposed to Blood Clots. Futhermore, I had been tested several times over a five year period.

Additionally, a good idea to check family history, if you can. I had always thought that my grandfather had died of lung cancer back in the very early 80's and it was actually a PE.

Over the years, I have learned some things, and here are my humble thoughts.. For long term self care, with Dr. supervision...

Learn to know where your INR levels need to be for you with your doctor. Find a doctor that understands you needs, this is the most important, for long term care. Each person will be advised by what levels or ranges are, and they need to be stayed within as best as possible... It is REAL important to do that... It more work at time than most realize...

Taking Blood Thinners is similar to insulin for diabetics. Food does effect us, directly... Yes, it does require us to pay attention to how we treat our bodies with not only food, but activities as well..
As well with Diabetics, we need to stay consistent with our meals.. Foods have a specific matter to our blood and our bodies and so does exercise... No, I am not trying to harp or preach, I am just coming from very personal experience.

VERY few Doctors understand and acknowledge long term blood thinners... Many are just matter-of-fact about treatment. What they don't realize is that taking blood-thinners and having clots is an intergrated part of our lives, just like diabetics. The lack of compassion is to say the least, at times.

They are many of us, yet we get thrown in with other categories... Heart issues, Lung issues, etc... Because, it's blood, it needs to be addressed on its own merits... THis is my pet peeve of being lumped it when it's a separate issue..


The majority of the Emergency Room Staff that I have personally dealt are Educated by Ignorance in their protocol for a possible DVT, or PE Patient in their hospitals.

The bottom line is know your body and trust when it is telling you something...

Good Luck, weather it is you or a loved one, its a long process to understand.


Edited by: MICANDREU at: 2/20/2009 (15:20)
Co-Leader The Phoenix Club
Co-Leader Blood-thinners

Woman are like Teabags, you never know how Strong they are until they are in Hot water.
Elinor Roosevelt


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SLAMVAN's Photo SLAMVAN Posts: 7
2/19/09 1:08 A

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I was 16 when I found out I had a blood disorder, I had recently started birth control. I stayed home from school 2 days in a row because I felt weird and couldn't move my leg very well.. My mom decided to take me to the doctor. It took the doctor 3 hours, 5 xrays, 1 CAT scan and 1 ultrasound to figure out that I had a DVT and multiple pulmonary embolisms. I when straight to the ER and spent 10 days in the hospital over Christmas, It took 3 weeks of physically therapy to walk again I have made full recovery but I have to take 5mg daily and get my blood checked every 6 weeks. I have a blood disorder called Factor five Lieden Thrombophillia.

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WINDSONG26's Photo WINDSONG26 Posts: 2,680
2/11/09 1:31 P

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I was excused from work because I had seriously sprained my lower back at work and could barely walk, but what freaked me out was that the pain moved from my spine to lower and to the left. Eventually, I got up and went to the bathroom and I saw that my leg was purple. I go to my mom and we both start freaking out. It was the color of a plum. She called my aunt to take me to the hospital while she got ready. We get there and I was in massive pain. They did an ultra sound and found this massive blood clot that started in my hip and went down into my foot. They transferred me to another hospital because they were not equipped to treat me. The next day, they fluroscoped my leg and put in two stents and a cathater and melted the clot, but I still have problems with it and it hurts sometimes. My leg went 24 hours without much blood, so after I got home, I spent two days on the couch, unable to walk cuz I was in so much pain. Eventually I had to reteach my leg how to walk on my own. Not a pleasant experience, but I could have died as well. A clot that big, had it moved, would have killed me easily.

Tiffany

Depression is anger without the motivation.

I think depression runs rampant in society today because we are all so obsessed with making a living instead of living our lives.

Live your dreams, it's not as hard as it may seem...On your hopes you must lean...From your fears you have to wean yourself.


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ADOLLGENER's Photo ADOLLGENER Posts: 39
2/11/09 12:16 P

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I would like to start out with my story and by saying that blood clots are a deadly silent killer and kill 300,000 people a year. I work daily on getting the word out to people about blood clots and how dangerous they can be. There is so much more research that needs to be done and by spreading the word, we may be able to help with this.

It all happened one day while I was sitting at my desk at work and I all of the sudden had this horrible, uncontrollable pain in upper abdomen. Honestly I thought I must have indigestion or something. I could barely breath and so I had to go home. I went to bed or at least tried to, but the pain was so bad that I told my husband to get me to the doctor. We drove 15 minutes to the nearest ER and the doctor did a few test and said I was fine and sent me home with a diagnosis of a stomach ulcer and one pain pill. The pain pill helped take the edge off, but 4 hours later, I was up again in excruciating pain. My husband then took me 25 minutes to the nearest hospital in Kaufman, TX. They did x-rays, blood test, an ultrasound and a CT Scan. At that time the doctor came and told me that they were going to admit me into the hospital because my liver, pancreas, and kidneys were showing signs of inflammation and not working correctly. I had just turned 28 years old the month before and all I could think was I’m too young to die. They admitted me into intensive care there and kept me for 3 days pumping me with antibiotics and pain meds, still having no idea what was causes my problems. At that time, they realized they had to send me to Dallas because they couldn’t help me any longer and knew I was getting worse and needed better help. I was transported to Dallas Presbyterian Hospital on June 16th and there they found that my intestines were also dying and my family feared the worse. My two children didn’t understand and were so worried. I was scared out of my mind and couldn’t believe what was happening. I had not had one health problem my entire life and was just crushed. It took a total of 10 doctors and me being stuck with needles and probed and put through countless test, for them to finally figure out what was causing me to be so ill. I had an abdomen full of blood clots that were cutting off circulation to every major organ in my body. They diagnosed me with a disease called Prothrombin Gene Mutation and told me that less than 2% of the United States population had it. I stayed in the hospital for a month and was told by several doctors that they didn’t know if I was going to make it. They had no idea what to do and how to do it. I still have to see my blood doctor 3 to 4 times a month. This disease is hereditary and my children could possibly be carriers. I thank god everyday for giving me another chance at life and being a wife and mother. Please help with the research and cure of blood diseases that cause blood clots and help us spread the word. I could have died because the doctors had no idea of my disease and this research would help the many hematologist out there know more about it. To help with this cause you can visit the website for the National Alliance for Thrombosis and Thrombophilia at www.stoptheclot.org/

"Always concentrate on how far you have come, rather than how far you have left to go."

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