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Dog and kitten sleep  Veronica wrote over 2 years ago

My name is Veronica, I have Factor V Leiden, a blood clotting disorder and I am the Co-Founder of INR Tracker. I want to share my story of how I began taking Warfarin. This journey is the reason INR Tracker was created.

Please ask any questions you may have, and feel free to share your own story here in the forum.

In 2010, I was a new graduate of Rutgers University. I was one of the lucky few to obtain a job quickly after graduating despite the state of the economy at the time. It was an entry-level online marketing job at a web agency. Although the job was better than nothing, it did not pay very well and was a contract position. It did not provide health insurance or paid time off, but hey, beggars can’t be choosers. The lack of insurance didn’t bother me, because as most 20-somethings, I felt impervious to illness.

It was only about 4 or 5 months or so into my job that I began to experience neck pain. I thought at first it was just the way I had slept, but days went by and it only got worse. Over time, my entire back was hurting. I was stiff and miserable.

Of course my lack of health insurance made me reluctant to see a doctor. I was hoping it would just “go away,” but the pain became so severe I had no choice. So I went to the emergency room. The doctors performed a CAT scan and told me it was all clear and that it might just be “stress” or my “pillow,” so I was given some pain medication and told to go on my way.

Days turned into weeks and it kept getting worse. I was at the point where I could barely stand up. So I reluctantly went back to the E.R., this time to have an MRI. Again, I was told it was all clear, nothing abnormal, was given more pain medications and was told to see a physical therapist to help with my stiff muscles.

The next day I made an appointment to see a physical therapist. Though, I felt pretty hopeless about the whole thing. The therapist massaged my neck and back and helped stretch it out. Towards the end of session he applied what I think is called a Transcutaneous Electrical Nerve Stimulation (TENS) unit. It is a device that sends low-voltage electrical currents to help relieve pain. All-in-all the experience did very little to help rid my body of pain, but I was hoping that over-time I would see some kind of positive results.

The very next day I woke up in agony, barely able to breathe. I experienced sharp pain in my chest and lung, and about every 5-10 minutes I had what felt like a massive spasm in my chest. I was unable to breathe deeply and had to take very shallow breaths quickly in order to get enough oxygen.

I did not go to the hospital.

Being an uninsured hourly worker with student loans and rent to pay, I felt at the time that I could not afford to take unpaid time off again and again to go to the hospital. I was so exhausted from feeling miserable and so tired of doctors never finding anything wrong with me. I just tried to deal with it the best I could.

I had no idea what a pulmonary embolism was. I had no idea more than 100,000 people in the US get them each year and roughly 1/3 of those that do die. If I had, I’m sure I would have made the trip to the hospital.

Citation: http://www.cdc.gov/ncbddd/dvt/data.html

Nevertheless, I dealt with the pain for about a week and a half. I got pretty good at breathing tiny breaths and enduring the pain. On the plus side, my neck and back pain got better! I thought to myself, or maybe just hoping, that this was just part of the healing process.

Not too long after my unknown pulmonary embolism, my left hip started hurting. At this point, I thought to myself “I just want to die”. I felt like I was literally falling apart. The pain in my leg wasn’t that excruciating though, and it got better after walking.

At this point I had been experiencing all these symptoms for over a month, but finally I got some physical evidence: my left leg began to swell and was turning red. Finally! Proof!

Nice and chipper, I went to the emergency room. I told the receptionist what my symptoms were. Instead of being told to “take a seat” like usual, I was told to immediately proceed to the check-in area to speak with someone.

After being quickly examined I was told I probably have a blood clot in my leg and need to be admitted immediately. I was pretty shocked. I had heard the term “blood clot” before and knew they were bad, but I thought people in their 20s don’t get them.

I stayed in the hospital for a couple of days and racked up over $30,000 in medical bills. While I was there I was given Lovenox, which is an extremely expensive blood thinner. I was on it until my INR was in the therapeutic range of 2.0-3.0. After that was achieved, I was discharged with a few Lovenox needles and a prescription for Warfarin.

For my Warfarin therapy, the hospital referred me to a local clinic. The next day after discharge I went to the clinic.

I’ll just say that the bedside manner of the clinic’s staff left something to be desired. Their tone was very matter-of-fact and lacked empathy.

I was told to:

- Immediately stop taking oral contraceptives
- Immediately stop eating anything “green”
- Do not exercise because it could dislodge the clots and kill me (that was literally what they said)
- Wear compression stockings every day because the damage to my veins was severe and its been shown to help, and that if I don’t wear them I’d “regret it” later in life.
- Start taking 5mg of warfarin for the next 3 days and return to the clinic to retest.

It was all really overwhelming. I kept asking them how long would it take for my clots to go away, but no one had an answer. I asked 3 months? 6 months? A year?

“I don’t know,” they would say.

After days and weeks, I was still having trouble maintaining my INR in its ideal range. I kept having to test weekly, and when they’d let me go untested for longer than that, my INR would be really out of range; either really low or high.

My highest INR ever was a 6.7. That happened after they said I’d be ok for three weeks without an INR test. To treat the high INR, they told me to “hold” Warfarin for a few days. They didn’t give me a mini-dose of oral Vitamin K like I thought they would. This experience was very stressful because I was afraid of internal bleeding.

It was really difficult for me to pinpoint the causes of my INR fluctuations. It was hard for me to remember everything I did during the days in between my INR appointment. It was also a struggle for me to even remember all the dosage changes I had to have. That’s why I created INR Tracker, to help myself and others keep track of their therapy and allow people to record and analyze data regarding their therapy.

All-in-all I was on Warfarin for a year. About 8 months into treatment I went ahead with the blood tests to figure out the cause of it all. I was diagnosed with Factor V Leiden – Homozygous.

I’m off Warfarin now, but if I ever get a clot again, I was told that I would be a “Warfarin Lifer.”

That’s my story. Please ask any questions you may have.

I also want to hear your story too!

Category: Blood Clots

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Total Comments: 96

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Puppy sleep2  PurpleRose06 - - posted 10 days ago

Hi I just recently found out that I have both protein C and protein s deficiency I am a 36 year old female. Protein C and protein s deficiency is a genetic condition I was adopted when I was seven months old so I didn't have access to any family history I've had three strokes and two heart attacks and finally was able to see a cardiologist that I haven't ever seen before and he is the one that looked at me and within a matter of minutes he tested me for protein C and protein s and the very next day they called me and told me that it came back saying that I do have that deficiency I have been on coumadin for little over 2 years now I have my first DVT in 2010 but don't Coumadin for a short while and then the doctor took me off of it I am now on it for the rest of my life currently I am taking three different blood thinners because I had a heart catherization in August of 2017 and I had to stop my Coumadin for a couple days so that I could have the heart catheterization which led to me having a thrombosis and my right radial artery since then I have been fighting with low Warfarin levels and will be going to the doctor later on today too see if I have a DVT in my leg once more.

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Audi r8 2007  Robean218 - - posted about 2 months ago

Hello! This post goes out to anyone that can assist me. At the end of 2014, I developed DVT and PE and it was coming from emergency surgery. I completely understand that. Here we are in 2017 and just a week ago I was again diagnosed with having DVT. I have not been traveling, I do not sit for an extended amount of time, I'm not overweight and I am not bed ridden. So the new clots are unprovoked and the doctors are not really sure why this has happened. Earlier this year I did have a partial nephrectomy on my left kidney and it was found to be benign and I thought maybe that had something to do with it. However, I was told it had nothing to do with it. I can't find any information that would lead me to know why I would have these clot. My new findings are that I'm extremely fatigued and my leg hurts which is expected because there is clots. The clots were discovered a week ago in the pain is still there. I'm just looking for like situations so that possibly I can have my doctor explore other options instead of just scratching their heads.

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Porsche boxster  Harry kendall - - posted about 2 months ago

Hi Veronica my name is harry from England I to have the same as you .but because it was my second one I'm on Warfarin for life.

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Cool dog  Roha Waha - - posted about 2 months ago

Where might I find a food serving guide with amount of vitamin k per serving size by food group. I enjoy fruits but do not want to destabilize my INR

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Iam killer dog  Jodalah8657@gmail.com - - posted 27 days ago

I bought a book on Kindle. I have the app on my phone so I can check the Vit.K in all the items. It is called Vitamin K Levels in Common Foods. It was inexpensive and nice to have the info readily available.

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Brachiosaurus  Joan Bolton - - posted 2 months ago

My INR went from 1,9 to 3,9 in 3 weeks and I am worried

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Iam killer dog  Jodalah8657@gmail.com - - posted 27 days ago

Hi,
I just started Warfarin August 14th. I did 1 week of the Lovanox shots and a 5 mg pill. I had my INR done on the 4th day. It was 1.6. 2 days later my INR was at 2.3. I was checked 3 days later I was 3.5. I was told to not take a pill that night, 1/2 the next and a whole the next. I went in on the day I was supposed to take a whole. My INR was 7.0. I am now off for 4 days. I am concerned as well and considering getting a home INR meter for home since it is the weekend.

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Polar bear family 2  Roseanne wilcox - - posted 3 months ago

How is INR tracker going to help me.? I've been on warfarin since last September....

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Penguins  jm3262 - - posted 6 months ago

Hi; My name is Joe. About a year after my tour in Iraq. I started with severe pains in my left shin and calf that my back pain meds will not touch. ( I have back and neck nerve blocks every 6-9 months at the VA.), So, Ive been on 60mg Oxycontyin Time Released. I can tell what pain is bone pain and nerve pain. The pain in my left calf is def inside, cause I can pinch or hit the calf and the pain outside does not touch this pain inside. I hope I am describing it right. Anyhow, it hurts so bad sometimes I took a pair of pliers and I pinched my calf with the pliers-- does nothing compared to whatever is going on inside! Ive been to a couple doctors and they both did the sonogram test for dvt. Both times-negative. Ive been to a heart doctor-all tests, nuclear tests-all neg,heart fine. Ive been to a pulmonologist. He has had all kinds of tests, the pft and he did say I have copd. I take Spiriva every morning and have breating devices when I feel out of breath. Ive taken my back meds, which is a new regimine, as the morphine,oxycodone, and percs, etc all stopped for this new entended release so you are not supposed to get hooked on it. Anyhow, the new pain meds are suppoosed to be at the top of the pain meds for pain. This calf and shin pain is a 9 out of 10 and it only gives me release when i put my feet up, like when i lay on the bed to watch tv. The drs have ruled out vein blockages. Any ideas? Thanks!

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Fantasy avatar 3  RuebenValentine - - posted 4 months ago

What is the new extended release called

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Dolphin  swigun - - posted 6 months ago

My name is Gunther and I had a heart valve replaced and therefore a warfarin lifer. I have been on warfarin since 2005. Sometimes my INR is fine for weeks and then it goes up or down depending on my diet. I use coagucheck to track my INR. Veronica I am so glad you started this website so now I can better control my INR. I just started to work on your website and I am still learning. Thank you so very much for this site and making it free to use for people who need it.

Have a great day

Gunther

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Polar bear family 2  Michelle Williams - - posted 7 months ago

Hi my name is Michelle, I just got home from the hospital less then 2 week ago. Reading your story is sort of what I went through. However, I have a lot of medical issues. I'm a Warfarin-lifer, I'm on one of the highest dosages I tale 18 mg a day. I'm afraid some days. This site is great it really does help me to keep things together my INR fluctuates so I like that I get to see why.

Thank you for your site!!!

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Tiger  rick - (14) - posted 7 months ago

I signed up today and have spent the evening inputting my medication and INR history. I am 77 days post mitral valve replacement surgery so am a Warfarin-lifer, and I too have problems maintaining my target range.

I self-test at home, thanks to the CoaguChek XS machine, so will mainly use the reports to email to my A/C Nurse for dosing advice. Anyway, I just wanted to thank you for putting this site together and making it free to use!

Rick

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Kitten in can  Madeline - (31) - posted 8 months ago

Hello Veronica, I am a Lifer of Warfarin. My story begins in dec 2007 I had a pain in my right calve, what looked to be a broken blood vessel. I didnt pay to much attention to it, till it started hurting real bad. I went to ER where they told me it was thromophlobitis, and it would go away. I went home, and 2 days later I couldnt walk on, putting my foot down caused me so much pain. it wrapped around my big toe. so again I went into the ER. they couldnt find anything sent me on my way. I woke the next morning couldnt breath and coughing up blood. takin by abulance, they ran test and told me I had a blood clot in my lung. spent 1 week in the hospital. heprin shots to give myself, and warfrin. i took the warfein for about 3 months. and a months later I had another pulmonary emboli. thats when they said I'd be on warfrin for life. I didnt know what I had for anohter 6 years, when I lost my medical. and didnt have my meds to take. rushed to er coughing up blood they found bilateral PE and pneomonia. and did a d-dimer test and diagnosed me with protein s and c dif.

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White lion yawn  Radha - - posted 7 months ago

Hi Madeline,
My niece who is 17 was rushed to hospital with symptoms of severe abdominal pain and vomit and diagnosed as Portomescentric Venous thrombos, a month back.
She is currently on acitrom ( warfarin ). While admitted, her blood sample was tested and found protein s and c diff. But I heard, while thrombosys is present these s and c diff are not correct indications. So question for you, when they tested for you for s and c diff, were you on warfarin?
Also are you saying that you were not taking warfarin for 6 years?
And few general questions for all memebers:
1. Does the clot in general melt or go away?
2. During that process, it can flow to anywhere and cause issues?
3. The alternate path blood takes i.e collaterals create problems? What frequency?
4. I was told may after 6 months to 1 year, we may stop warfarin? Is it safe? what are pros and cons of stopping or not stopping?
5. Since we really dont know why she had problem ( since I am not 100% sure on prot s and c diff ), what are in general causes for clot?
6. Why do people say INR range should be between 2-3 while on warfarin? How is it different than having 1 with or withour coagulents?
7. When do we need to woory on less INR while on warfarin. Ours is between 1.8-1.9 and doctor is asking to continue same dose

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Kitten in can  Madeline - (31) - posted 6 months ago

Hello Radha, hope your niece is doing better. My first pulmonary embolism I was put on warfarin and heprin, they told me any test would show false/positives. So I didn't know what caused it in the beginning. It wasn't till 2013 while not taking warfarin cuz lack of insurance. I was rushed to hospital with bilateral pulmonary embolism and pneumonia. They test me and diagnosed me with protein s and c dificincy. And depending on the size of the clot I was told the heparin usually breaks it down. Or the can go in and break it up. My INR I supposed to be between 2.5 and 3.5 guess it depends on your condition.hope this info helps some.

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Lady bug  alicecbrown - - posted 8 months ago

What foods can I eat to lower my INR.? I've been told it was 8.6 but just to hold for 3 days. They gave me Tramadol for a fall. but that's bad for your INR, In understand.

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Fantasy avatar 3  RuebenValentine - - posted 4 months ago

Greens with viatim k will lower your inr

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Baby goose kitten  Tgun - - posted 4 months ago

Hi Alice. Kale, spinach, broccoli. ...most dark green leafy veggies, I think parsley has the highest amounts of vitamin k. Also fat from grass fed beef fat including some cheeses made from the milk of those cows. I hope you are ok now.

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Polar bear family  peter stratton - (64) - posted 8 months ago

My story is similar to your although, I'm older. 55-years. I had a pulmonary embulism and dvt episode during February 2015. But looking back at it, I must've lived with clots on my lungs and elsewhere in my body for quite a few months; I was constantly exhausted - even doing the dishes left me breathless, then one day during our summer I decided to walk to the local library. I got there but was taken away by ambulance to hospital. I couldn't breathe - literally. I thought I was dying and in fact I found out I was dangerously close to death. I was in critical heart monitoring for a week. My heart rate would spike even if I was only leaning forward. I'd never felt so alone. Upon release, I wasn't given any information. No information about INR, no information about where or how to go for an INR test. Nothing. In time, I located and bought and INR monitor, the testing strips and got myself onto a Warfaren dosage plan with my local GP. Everything went well for a year or so and I became very lax; stopped my daily walks around the block (although in the back of my mind was the idea I'd throw a clot and die during my walk, when I did walk) and would be slack about taking my medication at the allotted time. I was prescribed 9mg, which seemed to stabilise but when I ran out of 2mg tablets, I dosed myself x3 with 10mg. Then it began; I woke one morning, screaming in pain. The pain in my left calf muscle was excruciating. Never felt anything like it before. No GP available, it was the Christmas break. I waited a day, rested my leg, the pain alleviated but my ankles and toes had disappeared into immense tissue swelling. I rang doctor at home, who told me to go to the hospital. But I didn't; resumed with diliigence my regular dosage at the scheduled time and resumed my walks albeit, slowly and only every second day. My INR reading at it's peak was 6.2, today, dropped to 5.7. Am still taking 9mg that is, up to last night's dosage. My GP is back from holiday and will be 'phoning me later today. But I certainly don't want to return to hospital; they were less than helpful and I was out of there in 8-days. Dumped and left to my own devices. I've had to find out what I've learnt without any help from any professional or allied health agency. I remain concerned about my high INR of 5.7 but am grateful it's at least dropped from 6.2

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1966 shelby mustang  jerryol - (42) - posted 5 months ago

Peter, how are you doing?

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Polar bear family  peter stratton - (64) - posted 5 months ago

Thanks for asking. I've been off Warfaren for almost 3 or 4 months and using a far more expensive medication that works very differently from Warfaren; so far I'm doing really well on it. It's a fixed dose of 10mg per day, administered twice a day in 5mg doses with x5 repeats. Then it's a GP check and if everything's good, another x5 repeats. Like I said, so far it's been very good and much, much simpler to manage than Warfaren. No INR tracking at home, just the regular dosages! But it's like ten times more expensive than Warfaren but for me, well worth the investment. I did read some bad press about the drug, there have been deaths as it's only been released for 7-years or so but decided to go ahead and take the risk. I figured since I was already living with the risk of throwing a clot anyway, I may as well risk trying a medication that if it worked out would liberate me from the tyranny of Warfaren. I was having bad side affects with Warfaren, particularly my skin which had become quite thin, prone to tears and strange, dry patches that would form painful crusts. All this has greatly alleviated on the new drug regime. Thanks again, for asking. I've checked the site and can't locate your backstory. I'm keen to know your story; please feel free to email me on vascoe.myer@gmail.com - I'd be interested to know how you came to use the INR tracker website.

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1966 shelby mustang  jerryol - (42) - posted 5 months ago

Well that does sound a good bit better. Glad to hear it. (except for the much higher cost!). You sounded pretty frustrated in your original post, and rightfully so I think.
I'm on warfarin since 2013 - for life due to a-fib and other heart issues. I haven't really had any problems with it, but I do track most of the greens that I eat, converting them into their vitamin K equivalent in a spreadsheet and adjust every two days or so by eating more or less spinach. I test at home every two weeks and mostly stay in range 2.0-3.0.
Good luck to you on those new meds.

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Dolphin  Bhill - (94) - posted 9 months ago

Another newbie, but not to Warfarin. Like many stories from others, I came to it differently.
I had Constant Daily Headaches for 18 years with near daily migraine flares. Neuro could find nothing, tests negative, started me on a regularly changing drug cocktail, all to no avail. Had a serious fall about 5 years into headache and was started on Fentanyl for back. Neuro upped dose to help with head pain. He finally sent me to hemotologist at local Cancer Center. Blood tests found Leiden V, Factor S problems, although no clotting issues despite 20+ in last 40 years. Dose of 5 mg 3x per week, 2.4 on alternate days. Probably on it or rest of my life now. He did a 1 person trial - I was 1st patient he treated for headache, much less with Warfarin, during his 30 year career.
Obviously, it worked! Not entirely migraine free, but only 2 in last year. Off all other meds for pain since moving to medical marijuana state.
An interesting point - I was told I didn't have to give up my favorite foods - spinach, broccoli, sprouts - just eat in moderation and no sudden increase in amounts. Only time INR has been off was while taking antibiotic.
Good luck to all of you.

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Dolphin  Daisymae1021 - (30) - posted 9 months ago

My husband is 70, has had 3 surgeries since May, has been on Coumadin for years from pulmonary embolisms. Had miniscus surgery October 26 on the upper part of his knee where there are more blood vessels and nerves. Was on heparin bridge for surgery and afterward returned to Coumadin plus surgeon added Lovenox injections twice a day. Discharged over weekend to rehab, and waiting for doctor to see him Monday, developed a massive hematoma around his knee. Surgeon drained as much as he could but most will have to be absorbed which could take a year. Having trouble getting his INR regulated, running from 1.2 to 8.8. Thing is, when his INR comes down, he has a lot more pain and I think that means as the blood begins to thicken it is settling again in his knee. I am just contributing this in case anyone else might have encountered similar event. Thank you for setting up this helpful site and I hope you are doing well.

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Black f1  Admiral - - posted 9 months ago

YOU OUGHT TO PRAISE GOD FOR 1 CLOT, PRESENTLY IN HOSPITAL WITH #"s 10 & 11,
5 arterial clots, 6 DVT....I know Lovenox---on it again, my stomach looks like someone worked me over, bruises all over my body, Your INR, you ought to be happy, Mine must be between 3.0-3.5, today's INR is 4.92, so another adjustment....5 Arterial clots and 2 DVT, since 7/2015, left leg, 1 DVT right leg 5/2012, 3 DVT left leg, all at same time, 3/2008....I could write a book on DVT, Arterial clots, INR and a whole lot more, actually been diagnosed with PAD, DVT, Chronic Epididymitus, Hyper Tension,, A-FIB, .....I am 5 times more likely to have a heart attack or stroke than the average person. A self test would be wonderful, and have studied the INR machine COST----not for me, unless you can do better---yea every week it gets tested, and some weeks, when I get out of the range, 2 INR tests....I have gone from 2 mg. to 10 mg., and all inbetween +80 mg Lovenox. If I scratch a Mosquitto bite, it bleeds for days, last time was near 3 days, of course my INR was way over---5.9...very dangerous A bump on the head and I could have internal bleeding.... I'd like to see what your offer is, hopefully cheaper

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Fox  sunbum38 - - posted 10 months ago

My story is a little different from everyones...I am 11 in 500,000 people per my Hematologist and he has let me know he will follow me for life....I had Guillain Barre and Epstein Barr virus about 6 yrs ago . A 1 1/2 yrs ago I was out of town at a wedding and woke up at 4:00 am with horrible belly ache.....Went to the ER and they explained I had a spleen infarction and 3/4 of the spleen had died due to a clot, only they couldn't locate a clot. I then came home and Inititally the hematologist said I had Leukemia....Then the battery of tests ensued and everything came back negative. This took months. My heart was looked at inside and out. All of the blood tests came back negative as well. They did find I was in hypercoagulation state and that is all they can find....They believe the Guillian Barre had impacted my clotting time. My sister dies from PE 10 yrs ago. But she did have risk factors(bc pill, over weight). The heredity blood test came back negative as well. Since then the spleen did regenerate to 90 % and I am 5 mg Monday and Friday and 2.5 all other days with Warfarin...So they really don't know what happened to me so its sort of scary because now I don't know what to expect. I have never felt the same since this has occurred...I'm only 54 yrs old and physically I struggle a lot now.... :(

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Polar bear family  peter stratton - (64) - posted 8 months ago

It is scary, I know. I have deep vein thrombosis and had massive pulmonary embulisms - basically, there were two big blood clots where there should have been lungs! Anyway, I understand how terrifying living with the danger and physical fallout of blood clots can be. Even when I am stabilised on Warfaren, I still can throw a clot and die as one nurse so eloquently and bluntly put it me. So, there's that constant thought in the back of my mind, every day, all day. It can really do your head in if you let it. Have courage, don't be afraid - find a doctor/doctors you trust and above all, do not go off your medication schedule. I did and now I'm paying the price. On the upside for me, my INR level is slowly dropping so fingers crossed, I'll be okay. But it's not a picnic, I know and don't be frightened. As long as there's life, there's a reason to go on. Live your life, be aware and do what you can do. Don't push yourself. I am physically struggling, to and one year older than yourself. I think after major medical episodes similar to what we've suffered the body takes a while to regain it's equilibrium. Good vibes to you!

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Fantasy avatar 4  Tammie - (39) - posted 11 months ago

Omg, I'm so glad I found this page. I have been on Coumadin since February this year and I'm still so confused. I experienced everything that you did.... I have a pulmonary embolism. I need help......

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Baby goose kitten  Tgun - - posted 4 months ago

Tammie, I keep calm by being thankful that warfarin (Coumadin) can help me avoid blood clots, while living a fairly normal life. Warfarin works by interfering with vitamin K's ability to cause blood to form clots. It can take a couple of days for warfarin to start working or to stop working. A good thing about warfarin is that seriously high levels can be reversed by the administration of vitamin k. And low levels can be treated with drugs, such as Lovenox. I have been on warfarin for 30 years with no clots. With a little research and time, you will be an expert. Follow your health care provider's advice regarding INR ranges and warfarin doses and testing frequency. Vitamin k is essential, so I try to eat about the same amount of foods, high in vitamin k, everyday. Some medications including antibiotics can affect INR, tell your doctors, including dentist, when they are providing prescription, that you are taking warfarin. To help with your confusion, to check levels of blood's clotting ability, a pro-time (PT) test is taken on the blood. The test results are converted to INR so that tests can be compared too each other. Most patients are assigned a therapeutic INR range of either 2.0 to 3.0 or 2.5 to 3.5 based on the reason for need to be protected from blood clots. I hope I provided some comfort for you.

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Baby goose kitten  Jankevin2 - - posted 9 months ago

Tammie, the next time you see your doctor, talk to him/her and ask about what INR is, why do blood test, how use Coumadin safely and anything that you want to know, your doctor will be able to answer your questions better, but also you can do research on the internet, but be carefull some info could be wrong. I've been on Warfarin for 5 years now because I have a Genetic Blood Clotting, it's part of my DNA , you need to be careful about eating to much Vitamin K and eating green vegetables and fruits, it has Vitamin K in it and it could throw your INR numbers off, I test at home once a week and the company will let my doctor know what it is and she will make sure I'm taking the right amount of medicine. I will take time but you will understand, make sure to ask your doctor to explain and answer your questions. Good luck.

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Flower orange  Bryce11 - (35) - posted 7 months ago

What type of blood clotting disorder do you have? My 20 yr old son was just diagnosed with a genetic heart disorder that creates blood clots in his lining of his heart. We just came home on a defibulator and Coumadin. Trying to learn as much as I can to make him successful with our part of food/medicine. His condition is called Left Ventricular Non Compaction Cardiomyopathy.

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White lion yawn  Dodson.donnalee@gmail.com - - posted 11 months ago

I have factor V and have been on warfarin for 15 years. I had a massive bloodclot in my leg after surgery in 2001. Fortunately my dr put a greenfield filter in just before the surgery- not knowing I had factor V, but just a history of dvts and pulmonary embolisms after a c-section in 1985 (factor v was only discovered late 80s? I believe) which ended up saving my life. Anyway, the last few months my hip has been killing me as is my shoulder (rotor cuff) and our hospital/medical center now has PT & chiropractic care. I just had my second treatment in two days with the tens machine and came across your blog. I was worried as my INR the past few weeks has been out of range (i have a coagacheck) low...1.9, 2.1, 1.8 last three readings. I'm thinking this might not be a good idea?

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Fantasy avatar 5  Irony - (91) - posted 11 months ago

I am so happy to have found this site. I had a double mastectomy a little over a month ago. I developed post surgical arm swelling. I asked for an ultrasound to R/O dvt (I'm an ultrasound tech). I have a DVT from my jugular vein to my elbow.

I'm on coumadin for 3 -6 months. This site has really explained a great deal. I'M nervous because I think I had too much vitamin K yesterday, but I'm trying not to freak out. THIS blood clot business is so frightening.

PS..They think the blood clot was caused by a previous central line I had placed years ago during heart surgery. They think it scarred the veins and left me vulnerable to DVT when I had another surgery. The DVT stinks, but all of the breast cancer is gone, so I celebrate that!

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Puppy sleep2  Gregg - - posted 12 months ago

This is all new to me, my fiance ended up in the ER and had open heart surgery (valve replacement, aortic aneurysm removal and aortic dissection repair). During surgery he had a massive stroke and can't speak or move right side of his body. I'm trying to figure this all out. Was searching for a good recipe book to help manage. I still work full time and have two kids. Any resources you have to share is greatly appreciated. I created this account for my fiance in hopes to help.

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Fantasy avatar 5  Irony - (91) - posted 11 months ago

Does your fiance have Marfan Syndrome?

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Fantasy avatar 2  Heidi - (58) - posted 12 months ago

I have factor 2 and 7 diffencey. I have an INR level of 0.9 I have never had to take medicine for this and was told my blood is dangerously thick.. I'm concerned. I can't get into a doc for about 2 weeks! What can I do

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Black lambo  rbernacchi - - posted about 1 year ago

I have been on Warfarin since 8/18/13 when I suffered a massive DVT & BI-LATERAL PE. I am a Warfarin lifer. I do my own weekly blood testing with a CoaguChek XS meter. During the past 3 years I have been in the Therapeutic range with some changes here and there. My question to you is that in the past 3 weeks my INR went from 2.4 to .09 and today 1.0. I call my Coumadin nurse week ingredients with the results and she then gives me my doseage. I was taking 47 Mgmt a week but it has not helped. What could have caused this sudden drop and it won't go up? I have a sinus cold and take Mucinex per the nurse and have no other symptoms of a possible blood clot. I don't eat dark green veggies and follow my daily routine to the letter. This is scaring the he'll out of me. I never want to go through any experience like that. Thanks for your help.

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Kitty in a hammock  sheila514 - - posted about 1 year ago

hi im from uk wason 10mg warfarin stable . have protein s deficiency last year got an infection in jawbone osteomyelitis they have treat me with 4months (no break) on oral and iv antibiotics . ive had svt this wek of 202 was admitted to hospital on tuesday took me off all antibiotics. last antibiotics were ciprofloaxcin/linezolid and tedizolid which is a newish one to the uk. inr this morning was 1.8 and should be 3-4 inr been off all biotics for 2 full days had s and s for 4 weeks loss weight sickness stopped not tother . lifetime user btw also had inr of 6.8 other week yesterday was 2.1 day b4 2.8 advice plz?

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Tiger cub  Beulah - - posted about 1 year ago

I did an valve operation almost 4 years ago, and I been using Coumadin , I do INR every 7 days , sometimes my NIR is low , and a few days test is 3.5 good range, I stop eating green leave vegetables, cause I have to used Coumadin for life, cause my blood in my body is not stables, it change often.

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Fantasy avatar 5  Richard A Krayewsky - (108) - posted about 1 year ago

My story started around 2 years ago after my right knee replacement with 2 DVT. A couple weeks later I went for a bloodiest and was put on Lovenox and coumadin which is a vial, needle do it your self injection. I did this for about 3 months and came off of it. I stopped all thinner's then.

The next year I had my left knee total replacement and after a few days, they found 2 DVT in my leg and 2 PE's. Blood thinners once again. I have been on this for a short time and I asked to be switched to Eliquis which requires no more blood tests. I thought alright.

Had a checkup about my clots. I told the PA that my leg was swollen much more than my right and had a severe headache for day's. That pushed them to do a bloodiest and a ultra sound which they found a 5th one as a PE.

Resolution: I will probably be on blood thinner's the rest of my life but the one good new's is I can eat grapefruit on Warafin and greens as long as you eat them consistently. Even though it is a pain, it is keeping me going. Yes I have down day's but who doesn't.

Good luck to all the blood clotters out there. It is definitely worth it.
My highest INRwas 5.95
Next visit within 6 days my INR was !.06 so I go from up to down and just hope i can get it stabilized soon

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Fantasy avatar 6  AprilGrenier9273 - - posted about 1 year ago

My story started back in 1990. I was diagnosed with 13 DVT's after two visits to the emergency room for pain in lower back and left leg. My left calf was as huge as my thigh. They found the clots when the doctor they referred me to took one look at my leg and sent me to hospital for blood work, x-rays and a doppler study. As soon as the tech put the doppler wand on my ankle they started counting. At first the doctor told me it was the added weight of a pregnancy that caused the clots. They then did a protien s and c deficiency test. The reults said that was the problem, however at the time of the test I was on Coumadin which causes a false positive result. So the doctor had me stop the Coumadin for 1 week and retested me, no protien c or s deficiency. As of 2006 I have had a total of 23 blood clots all but 3 were DVT's. I have done the compression hoses but they cut off the circulation to my legs. In 2006, I had a sharp pain in my chest, lost all feeling in right side of my body and had lost my eyesite for less then 2 minutes. When eyesite came back I had tunnel vision. I was sent for a CT Scan which showed a major stroke had occurred. To find out why they did an echo of my heart and found a 28 millimeter hole in my atrial septum. In 2006, I went under heart catherization to repair the hole. It actually took 2 catherization surgeries to close the hole. After the second surgery I started having tia's (mini strokes). To date I have had 23 of them, plus another surgery to stop an atrial fibrillation caused from closing the atrial septum. I have also have had two heart attacks and another major stroke. To date the doctors have not figured out why I get the clots and I will be on Coumadin for the rest of my life.

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Aston martin mid air  Kelli - - posted about 1 year ago

Although I have been on Warfarin for a year and a half, I just found your site.
Thank you for sharing your story!
I developed blood clots in my left internal jugular and subclavian veins shortly after having a medi-port placed.
After asking my PCM several times to be sent to a Hematologist, he finally complied.
As it turns out, I have a clotting disorder - Factor 8 - elevated.
From what I am told, it is very rare and it is not one that is typically tested for when checking for clotting issues.
So, I am a lifer.

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Polar bear family  Gaynor - - posted about 1 year ago

Not sure if I'm in the right place but here's my story, all started in March of 2011 when my father died in hospital the day after his birthday, I was devastated, I was very close to him I was 40 at the time and the youngest of 3, I spent the next year in bed literally, couldn't go out, had a 6 year old son who I couldn't even take to school or play with, I was literally getting up to go to toilet and back to bed... I ate very little but when I did it was in bed, watched tv in bed everything... I was in a really bad place mentally.. Then in March 2012 I noticed a swelling in my right ankle which I just put down to being lying down constantly so just brushed it off, it went down eventually and after a week started getting sharp pains in left shoulder blade, I couldn't lie on that side or the other side and felt as if there was something 'stuck' behind the shoulder blade, very painful then the other blade started to ache but not as much pain. I decided to start moving around a bit thinking that my body was locking up after being in bed for such a long time, but I was getting out of breath just going upstairs (I have also had anxiety since age 25) so I thought the racing heartbeats and skipped beats I was getting was due to anxiety. 30th April 2012 I went upstairs and got as far as the landing when I thought my heart had stopped for a minute or so and then jumped in my chest and started again, never felt so scared, my partner called an ambulance and by the time they arrived I was gasping for air and my heart was beating so fast I thought it would fall out! They put the thing on my thumb for oxygen levels which showed 90 so gave me an oxygen mask which helped eventually, I was put in the ambulance and taken to a & e where they sent me for an X-ray, results came back as numerous blood clots on both lungs... Cutting it short I was in hospital for 9 days put on warfarin and told that the clots were more of the 'worrisome' type and I would be on warfarin for life! So here I am 4 years later aged 46 and stuck on warfarin I've asked doctor many times if I can come off warfarin but they say NO.. My INR sheet says reason: unspecified and although I've told them that I was in bed for almost a year and about the ankle swelling they don't seem to think that was the cause... No other family member has had clots of any type and I don't understand why I'm still on warfarin or what reason caused the clots.... Touch wood I've not had an episode since although I've had numerous aches and pains and was convinced I had another but they said no, on one hand I understand that being on warfarin is stopping this from occurring again and if I was taken off warfarin now I would worry about a recurrence but I can't keep my inr stable, I don't drink (because of warfarin and only drank little before) but I do smoke around 30 a day (my only downfall, but my only joy in life), I'm overweight and feeling really low at the moment thanks for reading X Gaynor

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Penguin family  Makaimike - (54) - posted over 1 year ago

Salutation Veronica. Your story closely mirrors mine. I admitted myself to the ER in Orlando Florida 2 weeks ago today. I was out there for business. I never made my business meetings needless to say. They took me in immediately after x-rays and an ultra sound the kept me bed ridden while taking me to get a CT scan. Stating I had a clot the entire length of my right leg and a Pulmonary Saddle embolism. I test positive for lupus antibody as well. I look forward to utilizing this site. thanks for creating it.

Respectfully,

Michael

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Hedgehog  Lhrlovesmar - - posted over 1 year ago

I have Antiphospholipid Syndrome and Protein S Deficiency which were both diagnosed in 2002 after eight blood clots. In April last year 2015, I was sent for blood work and the BW determined that I tested positive for the Lupus Antibody! My INR target is really high @ 4.5 with a non-blood draw up to 5.9. My l last visit my INR was 4.7. No bleeding, no bruising. But, I have to be extremely careful in all that I do. I can sympathize with you because I was just 46 when My first clot was found. I've had 4-clots in my L-leg, 1-clot in my R-ankle, 1-traveled through my heart causing my heart enzymes to elevate thus a mild heart attack, 1-on my brain causing an Ischemic stroke and the final one traveled throughout my body causing a
T.I.A. (mini stroke). Finally I was sent for bloodwork which determined my chronic condition. I (like you) felt invincible @ just 46 years old. I continued to work after the first clot (clots in years 1992, 1993, 1999, 2000, 2001 & 2002 thank God for FMLA) until the plant shut down in 2004.

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Black f1  dscroland - - posted over 1 year ago

Hi Veronica, Thank you for sharing your story! I am looking forward to keeping track of everything on your website because every two weeks, my INR fluctuates from too high to too low and my Doctors and I are stumped.

On another note, do you know of anyone who was able to go off of blood thinner after they have gone on it and do you know their secret? I did meet one person and he said the key to his success was reading 'Eat Right for your Blood Type' and strictly abiding the rules put forth for his blood type. Within a year, he was off the blood thinner.

I suffered DVT's three years ago. I am a very healthy eater and get tons of exercise. In fact, the reason I had the DVT's (which I was completely unaware of at the time), was because I had been replacing breakfast every morning with a juicing shake packed with spinach, kale, chard, and other very high in Vitamin K foods. I was working out at the gym for an hour, six days a week. I felt like I was in the best health I had ever been in until my leg started hurting and I found out it was DVT.

So my question to you is whether or not you think a person could get off blood thinners if they closely monitor their Vitamin K intake?

Thanks in Advance!
-Donna

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Flower orange  LYNDA LYNN - - posted over 1 year ago

veronica my son just had a pulmonary embolism. he is in the hosp. he is on coumidin. I have the factor 5 and they tested him 6 mo ago and it was negative, but found a gene similar to my blood problem. my dr. put me on nattokinese 1 yr ago which is a natural supplement discovered by a Japanese dr. I am praying after my son is on couidin for 6 mo or so he can take natto. can you try natto after researching it??

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Puppy sleep  Warrior2 - - posted over 1 year ago

Hi Veronica

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Audi r8 2007  raelinn2929 - (66) - posted over 1 year ago

HOW DID YOU FIND OUT THAT YOU HAD A BLOOD CLOT DISEASE AND WHAT TEST DID THE DOCTOR ORDER TO FIND OUT ABOUT THE CLOT DISEASE.

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Fantasy avatar 7  NewLife - - posted over 1 year ago

How do you post ur entries? On the INR tracker I have a blood disease and clotting disorder. Hard life to live and not enough education to make people aware

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Flower red  Tami - - posted over 1 year ago

Hi Veronica! My name is Tami and I just now started your INR Tracker. On February 12th (also my birthday), I was diagnosed with a blood clot in my spleen. They started me on shots (I can't remember drug name) in my belly. Then started the Warfarin. Everything had been fine until 3 weeks ago when my INR was 4. I was told to stop the Warfarin for a week, then come in for another INR test. Today I got the results. Now, it's at 1.3. From what I understand (Im still learning about all this stuff) 1.3 means my blood is dangerously thick.
Just thought I'd try out your tracking site & see if it helps me any.

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Hedgehog  JurriesK - - posted over 1 year ago

I recently had an inr test level of 0.97 , is this bad or good. Headache for 5 days and super fatigued. Brain fog. My Dr is an idiot so I don't know

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Polar bear family  peter stratton - (64) - posted 8 months ago

I'm not a medical person but am on Warfarin and have dvt and pe. Your blood is v.thick and your symptoms ... g immediately to hospital. Your INR needs to be stabilised and any blood clots identified and treated. Don't panic. Just get to an emergency room.

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Hedgehog  JurriesK - - posted 8 months ago

Hello Peter, thank you for responding back to me. I have had tons of issues since my last post My neck and back hurt down my spine into my legs, so bad at times I feel like I can't stand it. And I have been falling down a lot lately. I have nerve tests done and they poked me 3 times and stopped because it was excruciating and said it was fine but have nerve Damage in my arms and hands though by 35 and 40%. I have constant numbness and tingling in my arms and legs and still have 18-20 severe headaches a month along with severe fatigue. I recently went to er and was diagnosed with a bowel obstruction and was admitted. The Dr stopped my blood pressure medicine. And when I questioned her, she kicked me out of the hospital without treatment or further testing for questioning her judgement. I reported her and she got a slap on the hand. I feel like I don't have a safe hospital er to go to where I live because my Dr flagged me so I just live with the increasing pain and symptoms. Since I posted this, my ability symptoms have increased and gotten worse ten fold, but they all just dismiss me as a drug seeker. Even though I don't ask for medicine. I have had 24 surgeries now to date and have severe circulation issues. I can't feel my feet when I sleep and they are so cold I have to put hot packs on them to get the stabbing feeling in my legs to go away. Anyway, thanks for responding to me, but unfortunately I guess I will just be living until I'm not. I'm just another number to the Dr's here. I'm not a person and even though I am in tune with my own body and I know deep inside something good bad is wrong, that's just not enough for them.
Anyway, sorry for the long mestage, but thanks again.

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Puppy sleep  Warrior2 - - posted over 1 year ago

That is dangerously low. I see you posted this 3 months ago. I hope that your levels have stabolised now. The headaches for 5 days is a warning. Lets us know how you are.

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Hedgehog  JurriesK - - posted over 1 year ago

Hi Warrior2, I don't know if the levels have stabilized or not. My Dr doesn't listen to me. at all. She keeps telling me that I'm a hypochondriac. I've had 20 surgeries and multiple hospitalizations. I have a kidney disease. But she says I complain too much. I'm looking for a new Dr. But I don't know where to go? Thank you for responding to my post.

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Audi r8 2007  EDDIEA - - posted over 1 year ago

Hi, Just want to say great with the site i hadn't noticed it before? so im assuming its somewhat new i hope it keeps on going i like the fact there is a place you can monitor your INR, I was diagnosed with DVT in 2012 after i suffered a seizure at home just before going to work i had test done (CT and MRI) when i arrived in hospital i was told i suffered a stroke due to a clot in the right side of my brain i was lucky to be alive then 2 days later while in hospital i suffered another that may have been the result of over dosing on medication sending me to the ICU for 2 nights. But i finally recovered and got to walk out of hospital without further complications thank god! I have been on Coumadin and Tegretol ever since and have been pretty regular with my results and always between range its only today that i found it in the 3.2 mark which found me on this site. Ive been advised by my GP to cut down on my meds from 4 to 3.5 for a week then retest hopefully ill stabilize in that time.

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Fantasy avatar 3  Tbigler - (57) - posted over 1 year ago

Hi Veronica,I don't understand why you are taking a chance getting another DVT or PE? If u know you have a blood clotting disorder, you should be a warfarin lifer already. Don't take the chance, I had symptoms with my first DVT, but nothing with my second which put me in the hospital for 4 days with a PE. Please don't chance it!!
Tim B.

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Penguin family  Cathy - - posted over 1 year ago

I have had 2 clots in my leg meny years ago,have been on Plavix for about 13 years all was good until Dec 23 of this year got 2clots in my lungs, 1 in each..they have me on injections in my stomach plus warfin & Plavix...They want to put me on Zeralto I don't know what to do..

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Dog and kitten sleep  Veronica - - posted over 1 year ago

You don't have to do anything you are not comfortable with. Warfarin and Plavix combined can be dangerous and needs close monitoring.

http://www.drugs.com/drug-interactions/plavix-with-warfarin-705-360-2311-0.html

Do they want to put you on Xarelto alone, or combine it with another drug?

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Wolf dog  tnthompson - (26) - posted almost 2 years ago

Veronica,
First I wanted to say Thank You very much for creating this site! I created a user ID for my son who is on Coumadin. I stumbled on your site because I was looking for symptoms of High INR values and a way to manipulate his therapeutic levels with food.

He is having a reaction that I am almost positive it is related to his Coumadin therapy. A few days ago he started developing hives/rash on his arms and legs, then it started spreading to his feet and hands and swelling began. It was deep red and painful. At first we tried some hydrocortisone and it helped some, but the next day I started increasing his vitamin K intake and it helped even more. I am taking him in later today to have another pt/inr test and if it's still in the high range that will confirm my suspicion. (although increasing vegetables in his diet might skew the results). I'm afraid of giving him too much veggies with vit k in case it reduces his levels too much and am trying to figure out how to use this site to judge how much he is getting. I know from past experience when it's really high I can give him a cup of green tea and a cup of cooked broccoli and it will bring his levels down (that time his inr was 6+ and the tea/broccoli brought it down to 2!)

Do you know if there is an easy way to see how much he has already had and how much more he needs to lower his levels safely by a few points? (maybe based on weight, dosage and vit k food intake history) Not sure how to get the best use out of site in regards to this. I tried to go to reports to see what his intake of vitamin k was, but didn't see it. Is there something I'm missing on this? Any help would be appreciated.

He's been on Coumadin since he was 4 (st. judes mitral valve) and he is almost 16. This is a new reaction he is having to the med's. We are a bit scared that it might be doing long term damage with all the med's he's on.

I was rather surprised reading your story that they started you on 5 mg a day. My son weighs 141 lbs and he has just been upped to 4 mg daily (which is also the reason I have to increase his vit k intake, because I know from prior experience this dose is too high unless I adjust his food). Of course I am presuming that a college co-ed would weigh less than this :) - excuse my presumptions if I'm incorrect. But I also know that everyone is different and people of the same weight will react differently to the same dose.

Anyhow, It's very nice to meet you and again, the work you and Pavan have done on this site is very much appreciated and needed!
Christina

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Dog and kitten sleep  Veronica - - posted almost 2 years ago

Hi tnthompson,

Thanks for sharing your story about your son. Sorry about his current health issues. Let us know what your doctor says about his rash. I hope he gets better and your doctors can figure out the cause.

Unfortunately, there is no formula that we know of that could calculate a vitamin k /warfarin ratio. As you stated, your son weights 141 pounds is taking 4mg, whereas I was taking 5mg - 7.5mg per day and I only weighed 100 pounds. The drug impacts people tremendously differently.

We will add in rash/skin condition to the ailment section. We are also working on adding Vitamin K to the reports.

Thanks for your suggestions. We appreciate them. :)

Best,
Veronica

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Kitten in can  ryanjulie - - posted almost 2 years ago

Hi Veronica,

There are some similarities with our stories with atypical symptoms and even the same year. But there is a big difference - I was nearly asymptomatic. The only sign of my DVT was cramps at night in my calf that went away after a couple weeks. Thought I was low on electrolytes from working out. Even my GP couldn't find anything during my annual physical a few weeks later.

Unfortunately, a couple days later I had a massive bi-lateral pulmonary embolism -- but again without the usual symptoms. Felt like the stomach flu. Finally, 6 days later when my shoulder (referred pain) and gut (it was the diaphragm) were in intense pain, I went to the ER. I had no shortness of breath or any other classic signs.

The ER staff was amazing and recognized quickly that something was seriously wrong and got to work fast figuring it out. I guess having good insurance helps because the care I got at Cedar Sinai (ER) and UCLA (follow-up) was exceptional. I spent a week in the ICU with a bi-lateral PE and 6 months on Warfarin.

My mom went on it the year before, so I was familiar with Coumadin. Turns out we have a genetic blood clotting disorder, but there isn't a test for the kind we have. My mom is a "Warfarin lifer", and like you, if I ever get a clot again, I'm told I will be too.

That's my story but the reason I'm posting this comment is to say THANK YOU. I also work in digital and several times thought about creating a site like this. I even have a half drafted letter to the founder of Ideo, hoping they might take this on. I am so appreciative that you have done it. I think the food tracking feature is a game changer for people on Warfarin and I'm going to get my mom started with it tonight. Hopefully I will never need it, but it's reassuring to know this exists if I ever do. More importantly, I think it will help my mom a lot.

You have done an enormous service with this site. I really want to see it succeed. If you ever need someone to bounce an idea off of or want some feedback on something, I have a ton of experience in digital, so please feel free to message me. Meanwhile, I'm going to shoot my doctor an email to let her know about it for her other patients on Warfarin.

With deep gratitude and thanks. ~J

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Butterfly  rki9998 - - posted about 2 years ago

Veronica, it is good to hear that you have been clot free since 2010 and that you are doing well. I love these types of stories...they inspire me. I am being told that the cause of my DVT/PE was due to my birth control pills. I have researched Nattokinase and plan on trying it to. Do you still take it?

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Puppy sleep  Cindy in nj - (4) - posted about 2 years ago

This site is a much needed friend! Thank you. Question: How do I find someone's history of their posted DIS Ease ?

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Dolphin  naenae0404@yahoo.com - - posted about 2 years ago

I havery been in the hospital for two weeks cause I have a blood clot on each lung. I started at my inr being .07 I am now at 1.71 get to go home when I'm at 2.0 but only problem is I don't have insurance or a primary care. On very low income do you have any suggestions in how I can get mine tested.

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Puppy sleep  Cindy in nj - (4) - posted about 2 years ago

Where's Obama when you need him 😜. I believe if you call your local county' s SS office (if you live in the US) they can direct you on a sliding scale clinic. I hope you find this to be a successful avenue. Also the hospital should be able to direct you prior to your dischg, I believe that's what the case mgr is there for

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Dog and kitten sleep  Veronica - - posted about 2 years ago

Sorry to hear about your blood clots.

I was in your same situation with not having health insurance. I am not sure what country you are from, but in the US some clinics offer something called "charity care." That is what I had get in order to be able to afford my treatment. I had to provide them with my pay stubs and I think my tax return and they based my payments on my income. Since I wasn't earning much, each visit cost around $30. They also scheduled me to visit with a nurse practitioner instead of a doctor because it was cheaper.

I'm surprised the hospital did not refer you to a clinic that offers charity care, especially since they must know you don't have insurance. You should try calling up the hospital that treated you and also some local general health clinics and see if they offer services to people without insurance.

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Brachiosaurus  xxhorrorsh0w - (61) - posted about 2 years ago

It's so great to have found such a wonderful resource from someone in a situation similar to mine! I have been experiencing shortness of breath and extreme fatigue for nearly 8 months and my PE was FINALLY diagnosed a week ago and spent 5 days in the hospital. I should have asked for a CT scan from the very beginning! I never dreamed I could experience this at 25. Your tracker is exactly what I've been looking for, as I have no desire to completely cut healthy vegetables from my diet. Do you have any plans to make this tracker into a streamlined app for mobile devices?

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Black lambo  Bebe - (52) - posted about 2 years ago

Thank you for sharing your story, Veronica, and for creating this website.
In 2011 I had a mini stroke (TIA) at around 8am, despite being on low dose aspirin, and at 2pm the same day was examined by a doctor at my local hospital, had blood tests, Doppler scan and CT scan. Was put on medication to prevent further strokes and a couple of weeks later returned to to be told I had Primary Antiphospholipid Syndrome (aka Hughes Syndrome) a genetic blood clotting condition, and that I'd have to be on lifelong Warfarin with an INR between 3 and 4, my target being 3.5. All I can say is how brilliant the National Health Service is in the UK.
I've always been a healthy eater, mainly vegetarian and fish, and love my salads and green veggies so I find it difficult to keep my INR stable, but I usually get there. Only trouble is when I have a cold, etc. my INR is all over the place. I sometimes feel lifelong Warfarin is a bit of a life sentence but hey, its better than the alternative!
Once again, thanks for sharing.

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Wolf  Pavan - - posted about 2 years ago

Hey Bebe thanks for sharing your story. Anywhere between 1-5% of the world has Hughes Syndrome so you're not alone!

I'm glad you're still eating your veggies, because it's still important no matter what anyone says :)

vitamin k alone helps prevent osteoporosis.

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Porsche boxster  oceanstatewifey - (23) - posted about 2 years ago

When I was 18 I had what I thought was my asthma really acting up.I couldnt carry a conversation,or walk 2feet without breathing very fast n deeply.My mother had made and appt with the cardiologist because she knew that something was wrong.The following day I went to my appt and he ran an echo in his office,he told us something didnt look right and head over to the ER and he'd meet us there.I had to have a test done in radiology(Not a CT tho) and within 5mins he told me I was being admitted right then and there and that I had a PE in my left lung,if I didnt stay I would die in in 24hrs! I spent 2days in ICU and then 5 in PCU ended up on coumadin for 1.5yrs and taken off..The cause they gave me then was birth control so for the next 13yrs or so I never took any form of BC and was fine.Last yr I had 2 deaths in 3days and 1 was my mother.I started to get lower calf pain the day after I had to make the arrangements at the funeral home and thought it was just from wearing heels.Over the next few days the pain seemed to get worse so on memorial day I went to the ER because I couldnt put any pressure on my left leg.I was put into a room with 4 other people,one being an older woman with spurs that had pain in her calf as well.The PCP I had wanted to give me a shot of lovenox and send me home with a paper to come back into the hospital the next day for an ultrasound.I told her thats not how it works with having had a previous DVT/PE and that she needed to run a D-Dimer.She had the lab come and take the blood for that test,and told me the US tech would be coming in because the older woman required one as well.I went for my US first because I was a risk.Im guessing about 1hr passed and both myself and the older woman both went to have them done and were waiting for results.My womans MD came in and told her she had a clot and was being admitted,5mins later the PCP came in and told me to go home.On tuesday I had gone over a friends house and just walking up her driveway about killed me,my back hurt,heart was racing and I felt clogged in the chest.I seen my own PCP that Thursday and she told me that they NEVER ran the D-Dimer at the hospital and she would do one just to be safe.I had a follow up with my Cardio the next day so she said keep that appt to be on the safe side.The next morning the nurse called and told me my D-Dimer was extremely elevated and that I needed to see the Cardio asap! I seen him and he then ordered me to go have bloodwork done and scheduled a CT for sat morning.I went and had my CT and low and behold I had a PE in Both lungs! I was admitted for 6days and now im on medication for life.The hematologist I had to follow up with was the one I had when I was a teen and he said he was wrong that the BC didnt cause it.He ran tons of test and has no answers as to why it happened.

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Wolf  Pavan - - posted about 2 years ago

It's infuriating that your doctor (PCP) didn't do an ultrasound or an MRI based off your clotting history. I'm sorry that you didn't get the best care possible.

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Puppy sleep  Cindy in nj - (4) - posted about 2 years ago

What is your history, y r u on this website?

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Wolf  Pavan - - posted about 2 years ago

Hey Cindy I'm a Co-Founder of INRTracker :)

I originally made the first version of INRTracker based on the experiences that Veronica went through.

Veronica and I both have a goal and vision to make the lives of those on warfarin better, easier and safer.

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Brachiosaurus  Abby - - posted 2 months ago

Hi Pavan, I'm replying to a very old post but I know you're one of the creators of this site. I'm not in the US and I wanted to ask if it would be possible to include metric measurements in the diet tracker? I've only just started using it, but I was stymied straightaway because I have no idea how many fluid ounces of coffee I drink :) If it's not possible I understand, but it would definitely make the site more user friendly for those of us outside the US. Thanks so much for establishing the site!

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Porsche boxster  oceanstatewifey - (23) - posted about 2 years ago

The hospital did the US and claimed it was clear yet 4days later I was admitted cause I had clots in both lungs.I have never been given an MRI.Can an MRI show the real cause of why Id be getting the clots?? My bio father told me that he had a clot and needed a stent cause his artery was blocked.Im thinking I have something genetic that they are over looking and Im afraid Im gonna die before they figure it out.

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Wolf  Pavan - - posted about 2 years ago

In regards to genetics:
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I would get checked up to see if you have any of these: Antiphospholipid Syndrome (also called Hughes syndrome), Antithrombin III deficiency, Atrial Fibrillation, Congenital Heart Defects, Factor V Leiden, Protein C Deficiency and Protein S Deficiency

If you know that then your doctor can be specific in treatment

In regards to what tests are good for what:
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It is generally considered that the Duplex Ultrasound Test is great for diagnosing clots in large veins above the knee (95% sensitivity Source: 1) but only moderately effective for diagnosing clots below the knee (73.55% sensitivity Source: 1).

MRI Tests do a better job than Duplex Ultrasound Tests for the Pelvis, Abdomen, and Chest because it doesn't use compression.

Sources:
1. "Deep Vein Thrombosis: A Clinical Review." Journal of Blood Medicine. April 26, 2011. Accessed April 22, 2015. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.349.5069&rep=rep1&type=pdf.

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Tiger cub  gunfire - (67) - posted about 2 years ago

On Sat, Jul 25, 2015 at 10:41 AM, judy wrote:
Keeping it in range . HMM lucky maybr. I stay away from broccli, brussel sprouts, spinach,cabbage. These were my favorites and I miss them. If I eat them my INR goes up. Green beans and peas seem ok.

Never miss a dose and have been on 2mg Mon, Wed, Fri and 4mg the rest of week. Now 4mg everyday.

gunfire

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Baby goose kitten  Tgun - - posted 4 months ago

Hi gunfire, I would think eating those vit. K heavy greens would cause your INR to go down.

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Wolf  Pavan - - posted about 2 years ago

That's interesting that you're on 4 mg everyday. I've heard taking the same warfarin dosage everyday stabilizes fluctuating INRs.

Thanks for sharing gunfire!

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Fox  Kennie Hendrix - (5) - posted about 2 years ago

thank God seen your page. i found out i had Factor V Leiden when my baby sister die back in 2007. her Dr. told my older sister that we all need to be checked for it. and now we all have it and our kids do to. it runs in the family. i had blood clots not just one but a lot go to my lungs. had a bypass on my left leg. and just had a blood clot in my left leg again. now my Dr. wants my INR at 2.5 to 3.5. just went yesterday and it was 6.4. but when i come out of the hospital 2 weeks ago. i went back on my Warfarin. and was sent home on 5 Lovenox shots. its like i don't know how much vim.K to get though food a day. if you can help me i would love it. back in 1996 i had a blood clot come up on my colon the size of a grapefruit. and they had to take out half of my colon. but then they did not know i had Factor V Leidon.

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Bugatti silver black  nessabutterfly70 - (17) - posted about 2 years ago

Hi Veronica,
First of all let me say thankyou for creating this wonderful site

My name is Vannessa I live in Australia I also have factor V leidon and Im a warfarin lifer.

I will tell you a bit of my story,

When I was around 19 25 years ago I had a car accident and sustained 2 broken legs and a broken arm so was laying around in hospital for around 4-5 weeks of an 8 week stay. I started to develop pain in my right groin and told my mum because she had a history of clots in the past. My mum informed the Dr at the time who informed her I was just a complainer because I was in so much pain all the time, my mum nagged the Dr for two days and still he didn't listen until the third day when I had severe pain in my chest and could barely breath then it was all action because I had a pain in my groin which had developed into a pulmonary embolism I was so scared and so began my first 6 month journey on warfarin.

Life went on I got better was taken off the warfarin and I got married and had three beautiful boys my three pregnancies were textbook until a week after the birth of my third son I noticed the tell tale signs of redness, swelling and heat behind my right calf so off to the Dr I went who told me it was superficial and nothing to worry about I went back to that Dr everyday who even with my history and symptoms did nothing to act on it, by the time I ended up at the hospital my leg was 33cm bigger than the other one again I was scared again they told me not to move as I could dislodge it again I was on heparin via the drip and warfarin thus beginning my life taking warfarin. They did blood tests and found I have factor v and then told I had to stay on warfarin for life I was devastated no more children I always wanted a girl. When my third son was four I had a surprise I was pregnant OMG I was so scared the DR told me I had to abort I refused and instead injected clexane twice a day my pregnancy went well and I had a beautiful daughter who is now 13 (how time flies). My warfarin dose is usually between 10 and 12 mgs of marevan my INR fluctuates between 1.8 and 3.2 but normally is in the 2's somewhere.

I am currently working in community nursing the pace is better for me as the hospital is full on.

The highest my INR has been is 5.7 and like you I was so worried and also like you they just told me to withhold warfarin. I can't remember what my lowest reading ever was.
I do get slack and don't test on time so this website is absolutely brilliant for me and I can keep track of other medical conditions I have developed again I say thankyou.

And I apologise for my longwinded story.

Have a wonderful day
Vannessa

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Dog and kitten sleep  Veronica - - posted about 2 years ago

Thanks for sharing this, Vannessa! You have certainly endured a lot throughout your life. I'm really shocked your doctor told you to abort your pregnancy. I'm so happy for you that everything worked out in the end!

It's really frightening how dismissive some healthcare physicians are about complaints of pain. It's bittersweet to know I'm not alone in that regard, so thanks again for sharing. I'm sure many others will be able to find your story very relatable.

Do you happen to know if you are heterozygous or homozygous for Factor V?

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Curious, what is the difference of above?

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  Blood Clot Recovery Network  (website) - (6) - posted about 2 years ago

Hello Veronica, thank you so much for sharing your story! Factor V Leiden is one of the clotting disorders that I know little about so I am very thankful for this information and your openness to share with the community. Thank you for co-founding INRTracker as it is a great resource for those of us still on warfarin or anyone wanting to take back control of their health. Thank you!

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Wolf  Pavan - - posted about 2 years ago

Thank you Sara! Unfortunately there is a lack of awareness around Factor V Leiden, and it's disconcerting because it affects around 10 million Americans.

But we will change that!

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Panther  maxilynt - (29) - posted about 2 years ago

Inadvertently hit the "dislike" button above--certainly didn't mean to. I did like the message and am astonished with it. Why are we treated so poorly when we deserve answers? How are you doing now, Veronica? It is so appreciated that you have created this tracker. It is so hard to keep track of all my meds and
appointments. My intent is to add a little each day. Thanks again!

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Dog and kitten sleep  Veronica - - posted about 2 years ago

I'm doing well now, thanks for asking!

I'm off Warfarin and trying to stay active and healthy. It's somewhat difficult as a web developer because I'm sitting down all day staring at a computer screen. I wear compression stockings while I'm working and try to move around every couple hours.

I've also been taking an herbal supplement called Nattokinase instead of baby aspirin every day. It's supposed to "thin the blood," but I have no real way of knowing if its actually working, It's giving me some piece of mind, though.

I'm pretty confident that it was the birth control that caused all of this. The blood clots only came a couple months after starting on it. I'm hoping that if I stay away from that and exercise more then I wont get anymore clots...at least not for a very very long time. *crosses fingers*

I'm glad you like this site. It's a work in progress and there's a lot left to develop for it. We are going to add in the functionality to track more than just Warfarin in the near future. We will probably send out an email or announce it here when that happens.

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Fantasy avatar 4  randallgranny1@yahoo.com - (32) - posted about 2 years ago

Leg dvt & pul emb 39yr ago from child birth, dvt leg after back surgery in 2005 & DVT 4 no reason last Thanksgiving so on warfarin 4 life. Blood's like water or catshup. INR x2 a week. HELP what's k level in cup of creamed low fat cottage cheese? Can't find it on any of my many k food lists. Thanks 4 this site I'm getting an INR machine 4 home use now.
Sandy. randallgranny@yahoo.com Say u r from INR so I don't delete it as spam

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Wolf  Pavan - - posted about 2 years ago

Sandy, I'm so sorry about your dvt and pe history.

In regards to the vitamin k in "1 cup of creamed low fat cottage cheese" - it has very little vitamin k. It has anywhere from 0 to 1 mcg of vitamin k.

The USDA recommends 90 mcg of vitamin k per day, so 1 cup of creamed low fat cottage cheese that has less than 1 mcg of vitamin k shouldn't be anything to worry about.

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Parakeets  bjc - (27) - posted about 2 years ago

I appreciated your story and found it full a lot of information. I have been on warfarin for several years and I just can't seem to get my INR under control. I keep trying to figure out what amount of vitamin K from food I should be aiming for one weeks average. Then I would like to use that as a target using your database for the vitamin K of each food. I take 7.5 mg of warfarin daily and one multivitamin that has 50 mg of vitamin K every day. I know the average daily recommended dose of vitamin K is 90 g a day. That mean that I should Aim for 350 mcg of vitamin K in addition to my vitamin pill every week.

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Dog and kitten sleep  Veronica - - posted about 2 years ago

Vitamin K might not be the only reason for the fluctuations.

Making sure to take your Warfarin and Vitamin at the same time everyday and on an empty stomach is important. Also, things like exercise, which helps to metabolize the drug faster, can cause fluctuations too.

I'd recommend tracking most of your daily activities to see if you're being consistent with these other aspects as well.

My INR was all over the place too. I think some peoples bodies just have a harder time with it for whatever reason.

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Tiger cub  gunfire - (67) - posted about 2 years ago

I was told to take warfin late in the day (after supper). I take a multi Vit, coQ10- 100 mg,eye vitamins, 500mg Vit D and many prescriptions for diabetus, A Fib, congestive heart failure,high colestrol and osteopina drug and pretty much in a wheel chair. I have been consistent for 3-4 years in INR. Few months ago had a slight auto acident and went to hospital under protest. They did blood test and Inr was 1.3. Never been that low. stayed a problem for 8 weeks. took louvenx with warfin. What happened? Seem to be okay now.

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Wolf  Pavan - - posted about 2 years ago

Hey gunfire. I'm sorry to hear about the auto accident and low INR. I've heard of stress causing high INRs, but not low INRs. I'm glad you're fine now, and that you've had consistent INRs for 3 to 4 years.

Do you have any secrets to keeping a consistent INR?

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