My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything.
Veronica wrote over 3 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.
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!