My name is Caitlin and this is my blood clot (DVT) and May-Thurner Syndrome (MTS) story.
At age 29, I was an active person, traveling a lot, playing sports, and chasing my nieces and nephews. One day in the fall of 2012, I thought I had pulled a muscle in my left thigh but shook it off thinking it was due to some extra exercise that week. However, when the pain did not get better in the next few weeks I made plans to see a doctor after work. That same day my whole leg started to feel tight, swelled up, and turned red.
I stopped in at the walk-in clinic on my way home and quickly knew something was wrong. The ultrasound performed on my left leg took a very long time and the technician asked if I had someone to drive me home. Those are never good words.
I was diagnosed with an unprovoked blood clot, a deep vein thrombosis (DVT) from calf to groin. Despite two risk factors (birth control and overweight), all the doctors agreed my DVT was unprovoked. I was given the choice of being admitted to the hospital or giving myself shots of the blood thinner, Lovenox, at home. I chose the at-home option and started both the injections and the oral blood thinner Coumadin (warfarin).
A week later the pain was increasing, the swelling had not gone down, and an ultrasound showed the clot was worse. It was then that my hematologist referred me to a vascular surgeon. My surgeon at the Palo Alto Medical Foundation took one look at my left leg and said the following words I will never forget: “I think you have this condition called May-Thurner Syndrome, but the only way I can know for sure is if I go in and take a look.” He explained that MTS is an anatomical variation, where the right iliac artery compresses the left iliac vein. It leads to left leg swelling, and in many cases, left side DVT.
A week later I was admitted to the hospital to confirm the MTS diagnosis through intravascular ultrasound while having my clot broken up using the Trellis Device (imagine a roto rooter for your vein). I had two stents and an IVC filter placed in my body.
The next day I was sent home with the instructions to continue Coumadin and to get up and keep moving as much as possible. It was stressed to me over and over to get in at least 30 minutes of cardio every day even if I had to start out slow and build up by one minute a week.
I was feeling better for a few days, but then my INR (international normalized ratio – used to determine the blood’s tendency for clotting while on warfarin) dropped and within a week the pain/swelling was back. Soon I was back in the hospital with a second DVT.
This time I was in the hospital for 7 days with a heparin drip and tPA (two medications that help dissolve clots) infused through a catheter to reopen the two existing stents. A third stent was placed. I was told yet again to exercise 30 minutes per day no matter what, so I did.
For the next six months my INR fluctuated despite stable diet and regular exercise. At my six-month check-up, my third DVT was discovered. I was devastated to hear that I had a clot from ankle to belly button. I had observed no symptoms; my swelling was slowly going down, I wasn’t in pain. I had no clue a clot was silently forming in one vein as my body built new collateral veins around it.
By this time I was feeling that the Coumadin (warfarin) I was taking was no longer the right choice for me. After doing extensive research, I met with my hematologist and convinced him to switch me to one of the newer blood thinners, Xarelto. After using Xarelto for eight months my clot began to clear a little – an unexpected result for both doctors.
I stayed on Xarelto for 19 months and am now (early 2015) doing a trial period where I am off blood thinners altogether. I am continuing with my cardio, compression stocking, and staying hydrated.
I was so lucky to find may-thurnersyndrome.org and the May-Thurner Resource Network groups on Google and Facebook early in my journey. The support, ideas, information, and sense of community I received from all the members have made my MTS journey bearable. All the amazing people there have taught me to advocate for myself, reach out when I need it, and to share the joys of life that post-DVT/MTS diagnosis has to offer. I now look forward to helping to spread the message about MTS and DVT’s and to continue to support those in our MTS Resource Network. MTS is a part of my life now, but it is not who I am.