John is a long-term Wall Street employee, who enjoys spending time with his son and two teenage daughters. He is an avid golfer and enjoys hiking. John experienced his first deep vein thrombosis in 2008 after having surgery on his foot. He then had a recurrent DVT in July of 2015. It was his second DVT that presented new challenges. Since then, he has experienced post-thrombotic syndrome (PTS) and deals with swelling in his leg.

When did you first notice you were experiencing deep vein thrombosis and what symptoms did you have?

I had foot surgery in 2008. I got my first DVT about a week after the surgery. I had a very swollen leg. I reached out to my surgeon about the problem, but I was told to talk to my primary care physician (PCP) because it was most likely a clot. After being diagnosed, they put me on lovenox and warfarin. I was only on warfarin for about a month or two.

Can you tell me about your recurrent blood clots?

I had a second blood clot in May of 2011, but it was a surface clot. So no one really got concerned about it. It wasn’t a deep vein clot, but it was in the same leg as my previous DVT.

Then, I went hiking with my kids in Colorado in July of 2015. This was many years after my initial blood clot. Everything was fine at the time. I drove from Aspen to Denver, and then flew to New York. The following day my leg was swollen and warm to the touch. I had all of the telltale signs another DVT.

It was one of the worst days of my life. My primary care doctor had retired at the end of June. I had to wait for a brand new PCP, who didn’t know my history or me but had acquired my doctor’s practice. I couldn’t get him to see me right away, so I waited for two hours in his waiting room in a great deal of pain.

I left the doctor’s office when they wouldn’t see me and went to radiologist’s office. I insisted they give me an ultrasound, which they did after calling the doctor and explaining the situation. The lab then finally gave me an ultra sound. The tech was a guy I knew.

“Houston we have a problem,” he said.

I watched the expression on his face change. He declared, “You have a DVT and it’s a big one.” He knew what I had known all day. At this point, everyone treated me differently. It got everybody’s attention.

Once again, I was put on lovenox, which took 4 or 5 hours to find at a pharmacy. I ended up driving all around to find a pharmacy that had this injectable lovenox. Once I got the box of lovenox, I decided I didn’t want to be alone in case it ended up turning into a Pulmonary Embolism. I live alone so, I went to a movie theatre in town and injected myself in the parking lot and went to the movies. As it turns out, a friend was in seeing the film. I sat next to my friend, which comforted me, in case something happened.

My new doctor was overwhelmed with his new practice, which had tripled in size overnight, so my care was very disjointed and I dealt mostly with his physician assistant (PA).  I have an INR clinic near me, so testing my INR levels has been very convenient and easy. My INR ranges have been pretty consistent, which is why I have decided to stay on warfarin versus some of the new classes of blood thinners that don’t require testing. Plus, there is a lot more long-term data on warfarin than any of the new ones.

What was your reaction to the diagnosis?

I wasn’t very troubled by my first blood clot. It was below the knee, so no one was too concerned about it. No one really knew how to treat it. I can’t recall how long I was on the blood thinners, but it certainly wasn’t long enough. It wasn’t the usual six months, but more like six weeks.

After my second DVT, the reality of the risk I took by having the foot surgery, which I had never contemplated, came to light. I feel like I screwed up my leg because I had a surgery that wasn’t absolutely essential. It has changed my life drastically. My foot surgeon had never discussed the option of putting me on a blood thinner, even though I had considerable varicosity in my legs (which was never looked at).

My kids gave me great theatre tickets to a Broadway show as a birthday gift. I never used them and never really explained why to my kids, so I wouldn’t scare them. I can’t go to the theater in the middle rows, because I can’t have my legs bent like that for a long period of time. Having my leg bent at the knee for long periods of time is painful.

When did you begin to experience post-thrombotic syndrome (PTS)?

My leg just never got better after the second DVT. Doctor after doctor would tell me things like ‘the DVT always clears’ but mine never did.

How did you adjust to having your DVT and living with PTS?

I find that mostly getting up from my desk a lot and walking around is helpful. I have conference calls early in the morning and I like to walk during them. I think that walking is very helpful, because it pumps the blood up my leg and gives me a sense of peace. While I’m sitting at my desk, I use something called a calf-flexor, which pumps blood and simulates the walking motion.

I’m a very active person. I go to the gym almost every day and I enjoy hiking now. I use a hamstring machine at end of my workouts, which allows me to stretch my hamstring but also lets me pump my foot while it’s straight up in the air. My leg always feels terrific after I do that.

Finding the right doctor is nearly impossible because PTS doesn’t fit nicely into a defined therapeutic bucket. The population at large doesn’t really understand clots and PTS. They nod politely at the suggestion you have it.

Do you have any advice for someone who is newly diagnosed with DVT?

The most important thing is to find the right doctor, which is not an easy task. Last year, I probably had 20 doctor’s visits, trying to find the right person and a solution.

You don’t want PTS.

Do you use compression stockings? If so, what has your experience with them been like?

I live in them. I would actually be quite terrified if I were trapped somewhere without them. I’m sure that they help with the swelling. I have more compression stockings than most people have shoes. Some days, one compression stocking will hurt, so I’ll try switching to a different one. I have athletic ones that I wear to the gym and also stylish ones.

Thank you John for sharing your experience with PTS and DVT. If you would like to learn more about post-thrombotic syndrome, see Dr. Susan Kahn’s talk “Coping with long-term effects of clots: The Post-Thrombotic Syndrome.”