Living with the “invisible disability” you’ve never heard about and anyone can get

Photo by Dean Askin/AskinImages Photography

If you passed me walking on the street, you wouldn’t know I live with a life-changing disability. Not as life-changing as some disabilities, but still life-altering. Big time.

You wouldn’t know just how painful literally putting one foot ahead of the other can be for me. Or for anyone else who lives with post-thrombotic syndrome (PTS). It depends a lot on the day of the week. Or the weather. Or what I did for too long today or yesterday. Or some or all of those things combined.

Those of us living with PTS live with “an invisible disability.” That’s how a friend I met for coffee and a catch-up at a Starbucks, termed PTS when I explained it to her. I’d never thought of it that way. But she was spot on.

PTS doesn’t kill you. But it’s life-altering. It just steadily, gradually lowers your quality of life without necessarily completely disabling you. Which makes it mentally and physically challenging to cope with some days. But unless you’re one of the hundreds of thousands of North Americans like me who live with it, chances are, you’ve probably never heard of PTS.

Google the term “deep vein thrombosis” and you’ll find a plethora of information about DVT. Do the same with “post thrombotic syndrome” and you’ll find not all that much anywhere on the internet.

PTS is the most common permanent-damage complication from a deep-vein thrombosis (DVT). It occurs when a blood clot damages the valves in your veins; they no longer open and close properly. So instead of flowing back up to your heart, blood pools in your lower extremities.

It causes pain, pressure, and for some people, massive swelling as well as skin ulcers in the affected leg. Or in both legs. Depends. It also causes physical exhaustion from short periods of physical labor or activities, because of that lack of return blood flow.

Don’t feel ignorant if you’ve never heard about PTS. Both the broader public and a lot of medical professionals (probably including your family physician), know very little about it.

Some people get a DVT and have a complete recovery with no effects whatsoever. About 60%, according to estimates from the U.S. National Blood Clot Alliance. But the statistics on development of PTS are actually quite staggering. Are you sitting down?

A whopping, estimated 23% to 60% of North Americans who have a DVT eventually develop post-thrombotic syndrome. That’s according to a peer-reviewed article by Aneel A. Ashrani and John A. Heit, titled Incident and Cost Burden of Post-Thrombotic Syndrome and published by the U.S. National Institutes of Health (NIH).

So I’m just one of those 23% to 60% statistics.

And the statistics vary depending on which authoritative source you consult.

Thrombosis U.K. states on its website that “up to 30% of people who have had a thrombosis in the leg will develop some post thrombotic symptoms within five years.”

The U.S. National Bloodclot Alliance says about 40% (330,000 people) of people in the U.S. alone have “some degree” of PTS. About 4% of people “will have severe symptoms,” says the Alliance.

Meanwhile, Dr. Susan Kahn, a professor of medicine at McGill University in Montreal, Canada, and a leading clinical research expert on PTS, says 33% of people can develop it after suffering their first blood clot.

She notes that you’re more likely to end up with PTS if:

· You’re over 65

· The DVT happens in your thigh (femoral vein) or groin (iliac vein)

· You’ve had more than one clot in the same leg

· You still have symptoms a month after your DVT diagnosis

· You’re very overweight

· You have trouble keeping your blood thinners stable during the first three months of treatment

Whichever grim PTS statistic you go with, Dr. Khan told a March 13, 2017 online support forum facilitated by the North American Thrombosis Foundation, “It’s very clear that post-thrombotic syndrome is absolutely the most common complication of venous thromboembolism. Given these statistics, it’s actually pretty surprising that there hasn’t been more attention paid to this chronic condition, both by clinicians and researchers.”

She adds, “I think every patient who develops a deep vein thrombosis needs to be aware there is a chance they could develop post-thrombotic syndrome. And they need to be taught about what that means, what symptoms to look for.”

More education and knowledge is crucial, says Dr. Khan. “It’s very important to educate health care professionals, patients and the public about how important it is to prevent venous thromboembolism from occurring in the first place. And of course the overall goal of all this is to improve long-term health and quality of life for all our patients with venous thromboembolism.”

I have a very, very good family physician. He has been my primary care provider for near-on 30 years, since he was a resident. He always tries to cover all the bases. In fact, he probably saved my life in January 2013. But like many family physicians, he knows very little about the PTS that set in after the diagnosis of my DVT.

It was me who researched on the internet and found the VEINES-QOL questionnaire that can be used to clinically measure the quality of life for patients with chronic venous disorders and insufficiency. And the Villalta Scale, another clinical questionnaire assessment that can be used to determine your level of PTS. The syndrome is graded mild, moderate or severe depending on your Villalta Scale score. I completed both questionnaires and gave them to my family doctor for my health records.

“Although [the Villalta Scale] has been approved by various expert bodies and professional bodies as a way of diagnosing…the truth is that many physicians don’t really know about the scale or how to go about using it,” notes Dr. Kahn.

A lot of specialists don’t know about PTS, either.

You simply don’t know whether you’ll end up with PTS until you see the signs of it setting in after you have a DVT.

In April 2019, my physician covered the bases once more. He sent me to a physical rehab specialist, just to see if there’s anything else that can be done for me. Guess what? At that initial and only consult, the specialist openly admitted he’d never really heard of PTS and knew little about it. During the consult, he actually went on Google Scholar to see what information he could find. I told him he wouldn’t find much. Basically nothing. “You’re right,” he said. I ended up educating him on PTS. There was nothing he could do.

This under-appreciation of, and lack of knowledge about PTS by both patients and medical professionals is both staggering and frustrating considering those PTS statistics. And that it very much affects your quality of life. And that there’s basically no treatment for the syndrome. And that even authoritative sources on the internet tell you to prevent getting PTS by not getting a DVT in the first place. Well…okay, then.

“It used to be thought that if you wear compression stockings for up to two years after your DVT was diagnosed, that this would prevent post-thrombotic syndrome,” explains Dr. Kahn. “A recent study our group did that was published in a really high-end journal, we were not able to prove that.”

When you’re in the ER being pumped full of blood thinners to get the DVT under control quickly so you don’t die, the doctors don’t tell you about the possibility of PTS. Nor during follow-up treatment. I learned about PTS on the internet during my follow-up treatment.

You simply don’t know whether you’ll end up with PTS until you see the signs of it setting in after you have a DVT. Basically, the only way to lessen the chance of developing post-thrombotic syndrome is to see a doctor as soon as you think you may have a clot. If your leg’s swollen, red and hot to the touch, get to an emergency room right away. The faster you’re treated with blood thinners, the less chance of PTS resulting. Maybe.

Researchers Ashrani and Heit noted in their aforementioned paper, that PTS can be diagnosed only “3–6 months after an acute episode of DVT; once the symptoms of DVT are no longer evident.” That’s largely because some PTS symptoms can be mistaken for another clot.

For me, PTS started showing its first signs within four weeks of starting on blood thinners after my DVT was diagnosed. That’s because my DVT went undiagnosed for two-and-a-half months. The damage to the valves in my leg veins was done. What I had thought was a third bout of cellulitis, and just a cramp in my leg on Christmas morning 2012, was actually a DVT happening.

Thinking it was more cellulitis (my leg was red and warm to the touch), I went to a walk-in clinic. “To me it looks like a circulation issue, but I’m going to give you the antibiotics anyway,” the physician on duty told me. “But when the prescription is done, you should see your family doctor.”

I did. In mid-January 2013. He renewed the prescription. But he also ordered an ultrasound, which was done a week later. And when it was finished, I was sent straight from diagnostic imaging to the ER wing with the ultrasound results in hand.

In hindsight, I was very, very lucky to live. That DVT could have broken off, become a pulmonary embolism (PE) and killed me instantly. That’s what happened to my mother in 1995. She had circulation issues for decades, but never saw our family doctor about them. “It’s just part of getting old,” she would say. Ballocks. Apparently a doctor told her way back in 1962 that she should get checked out. She never did. The DVT happened in her right leg, in the femoral vein. In two minutes, she was dead on the floor of the upstairs hallway at 73.

Even when you’re as resilient as I am, there are days I hate living with PTS. I’d like to be able to have a whole lower body replacement.

I was 49 when my DVT happened in my left leg. In the same spot. The femoral vein. Runs in the family, it seems. I know the incident that was the actual physical cause of my DVT. I’d been intensely working on a project, engrossed in it, and didn’t move out of my chair. For 13 hours straight. That would do it. Still, I clearly inherited a tendency given that my mother died from a clot in the same vein in the opposite leg. Even though genetic testing resulted in my DVT being ruled asymptomatic.

Here’s the scary part of it: If you have a blood clot in your lower leg, there’s only a 20% chance it’ll become a PE and snuff you within mere seconds or minutes. But If you have a DVT high up in your leg, your chances of dying from a PE are 80%. And your chances of being left with PTS damage also go way up. Let that sink in a minute.

After my DVT I started reading up. I vowed I wouldn’t get PTS. Started walking right away like the thrombosis specialist told me to. Hmmm, that didn’t work out so well in the end. Just how much does PTS affect your quality of life? I’m a resilient person. I’ve learned to cope with and manage this different state of normal. Sometimes I just push through things, knowing that I’ll live with the consequences for a couple of days. But even when you’re as resilient as I am, there are days I hate living with PTS. I’d like to be able to have a whole lower body replacement.

Photo by Dean Askin/AskinImages Photography

Here’s a glimpse into what living with PTS is like.

For me, changing symptoms have crept up over the last six years. Initially, in 2013, I had real heaviness in my left lower leg and foot. Over a year, it waned. But over the same year or so, I developed signs of PTS in my other leg — where there’d been no DVT. However, I was still able to walk every day, anywhere from four to eight kilometres with no problems.

The final time I saw the thrombosis specialist in early September 2015, I told her there was a bit of PTS, but it wasn’t bad. I was still optimistic. “Not yet,” was her grim reply. Turns out she was right. The PTS sneakily grew in both legs. Then it spread and settled in my feet — getting worse ever so slowly. I could sense the changes happening ever so gradually. And that was depressing.

In 2016, I could still walk four kilometres a day. I walked that distance every day for months while being a caregiver for my ailing father in his final two years of life. I can’t do that anymore. Some days, just walking from the living room to the kitchen is a challenge. So is standing in a take-out line at KFC.

I used to cycle up to 50 kilometres a day, five evenings a week in the summer. In 2010, I did my first — and only — century ride, participating in the Multiple Sclerosis Canada Grand Bend–London, Ontario, 100-km, two-day ride on the London Life team. I enjoy cycling. It’s good for my mental health; and it’s helping heal my body that’s been physiologically and hormonally messed up for a quarter-century. When you’re cycling, you’re using your quads, with less pressure on your feet. Still, I can cycle only two or three times a week now. And now my feet start feeling ready to explode when I’m the last few kilometres from home. And about 28 to 32 kilometres is my limit. Some days I test myself and push it to a 40-kilometre ride just because I want to. When I do that, it’s the better part of a week before I can cycle again. No more century rides. Ever. Much as my brain and enthusiasm for cycling would like to.

I used to be able to get the garden beds around the perimeter of our yard weeded in a day or two. Now it takes me a week or more. Because a couple of hours or so on my feet is all I can stand. Literally. Then I’m paying for it for the next 12 to 18 hours until things settle down.

I recently spent six hours on my feet giving back to the community by doing some volunteer event photography for the Canadian Mental Health Association. It was rewarding. But it took my feet and legs three full, painful days to recover. There’s no way I could do a job requiring me to be on my feet every day. If I do anything intense on my feet one day, I have to take at least the next day off from doing much else.

One day I had a lot of energy and went for a 30-kilometre ride, then spent 90 minutes cutting the grass. It needed to be done. My brain wanted to do it. I was pumped. That day, I thought I could handle doing both things in the same day. I thought wrong. I paid for it, painfully. All afternoon and evening. Things calmed down overnight.

Living with PTS, there are some things I can still do without too much discomfort. There are things I can still do, but not to the same extent as I used to and with some discomfort. There are things I can no longer do, to my frustration. There are things I still have to do and just work through the painful consequences of being on my feet too long. There are things I still want to do — and consciously decide to do — even though I know I’ll pay for it. It’s a really hard psychological adjustment to deal with the fact that you can no longer do things the same as you used to. Or just things you used to do. And that this invisible disability is with you for the rest of your life. It’s also hard to get your head around your spouse’s walking problem being fixed by two knee replacements when you know yours can never be fixed. There’s a cumulative effect of all these things on my quality of life.

Says Dr. Susan Khan, “The syndrome can interfere with regular activities like walking, standing, the ability to work, the ability to do one’s work around the house. This is known as affecting one’s quality of life and for this reason it can make life less enjoyable.”

Thrombosis U.K. puts it this way, calling PTS “a persistent and debilitating long-term condition which can have a significant effect on a patient’s quality of life.”

Everyone who has PTS is affected differently by it. You can have some or all of the symptoms, to one extent or another.

Says the organization, “It can produce both physical and psychological symptoms which can limit a person’s day-to-day activities, sometimes quite markedly. Some patients may need to stop taking part in certain sporting and other leisure activities, and many people find that their PTS also reduces their self-esteem and affects their family and personal relationships. At work it can cause loss of productivity, lead to adaptations needing to be made to work environments or practices, or may even mean the patient can longer work at all.”

Thrombosis U.K. is spot-on about the “physical and psychological symptoms” of PTS. Some days it’s hard to get your head around living with a syndrome that doesn’t necessarily cause complete disability, but steadily, gradually, increasingly affects your life and limits your mobility. My PTS is now at the point where I’m in discomfort and often outright pain all the time just putting one foot ahead of the other. That’s been the progression of it over the last six years.

Everyone who has PTS is affected differently by it. You can have some or all of the symptoms, to one extent or another. Dr. Kahn describes PTS as a “constellation or group of symptoms.” That’s why it’s a syndrome, she points out. These are the typical ones:

· Pain

· Swelling that gets worse after walking or standing for a long time, and better after you rest and raise your leg(s)

· Achiness or heaviness in your leg

· Cramping

· Itching

· Tingling (pins & needles)

· Bluish or brownish color of the skin on your leg

· Skin ulcers on your leg (severest PTS)

· New varicose veins

· Dry, thin skin on the affected area of your leg

· Spots of skin that stay depressed when you apply finger pressure

I don’t get the massive swelling that some people living with PTS get. Nor, fortunately, have I developed the skin ulcers that can be extremely difficult to treat. But I do get the achiness, bluish-redness, heaviness and pain from standing or walking too long. I pretty much have all the other symptoms as well.

Dr. Kahn notes in about 50% to 60% of people with PTS, it’s mild. Another 20% to 30% have a more severe form of it. To the extent that when I measured my level of PTS using the Villalta Scale, I scored 14. That’s the highest end of moderate. Fifteen or above is considered severe and includes having skin ulcers.

With PTS, symptoms — except the skin ulcers — tend to wax and wane. “You may feel them all the time or they may come and go,” explains Dr. Kahn. She says this is “very characteristic of post-thrombotic syndrome.”

And that’s a big part of why living with PTS is so physically and mentally frustrating.

Once you’ve got PTS, you’ve got it for life. There’s basically no treatment for it. “Unfortunately we just don’t have that much to offer patients at the present time,” Dr. Kahn said during the 2017 online support webinar.

Basically there are only two things you can do to relieve PTS symptoms.

The first is, wear medical grade (30–40 mmHg), graduated compression socks or stockings every day for the rest of your life. (At least it solves the problem of having matching socks or wearing socks that go with your outfit.) These have the most compression at the ankle, and the least at the cuff. The graduated compression lessens swelling and forces more blood to flow back up the leg.

Some days, if I’m not doing too much, I don’t wear my compression socks. Just for a break. But mostly I do. Technically, I should be wearing thigh-high compression stockings. That’s because my DVT was in my left femoral vein in the upper thigh and the valve damage goes that high. But thigh-high compression stockings are very restrictive. Just try cycling or doing a chore that requires getting down on your hands and knees, while wearing them. Especially in the heat of summer. So most of the time I wear only medical grade compression knee-high socks.

The other thing is, elevate your legs and feet — above your heart — whenever you’re sitting. And whenever you can. It relieves the discomfort, pressure and any swelling, getting the blood flowing back from your limbs. Dr. Kahn suggests “three times a day for 15 to 20 minutes at a time.”

But, she notes, “It’s easier said than done, particularly if you’re working and you’re on your feet all day.”

One Canadian company developed the Venowave. It’s a unique battery-operated unit that straps to your leg (easily wearable under clothing). It moves back and forth, sending wave impulses through your veins to get blood flowing. It’s not cheap, at $600 Canadian. In 2014, I talked with my physician, got a prescription for it and invested in a Venowave unit. That was when my PTS wasn’t too bad, and it was only in my original left damaged leg. I stopped using my Venowave after PTS developed in my right leg as well, and after I also had to start wearing compression stockings. The Venowave needs to make contact with your skin. Which makes it ineffective and useless if you’re wearing compression stockings. And if you have two damaged legs with PTS.

Dr. Kahn notes that “only about half my patients” have benefited from a Venowave.

Now when I’m in a lot of discomfort and keeping my legs elevated isn’t doing the trick, I get temporary relief by using one of those HomeMedics units that send varying degrees of impulses through your feet and legs depending on how high you set the controls, and for what length of time.

Exercise can help the symptoms of PTS because it gets your blood flowing. That’s why I still cycle as often as I can. Sometimes I’ll do a very short walk. I could probably swim in the winter. The challenge is finding an exercise groove and activity that doesn’t cause you pain. Leg strengthening and flexibility exercises are good. I know I should be doing them more.

It sucks that there are basically no support groups for this syndrome when millions of North Americans alone live with PTS.

Dr. Khan led a six-month study that saw PTS patients doing a 26-week program of strengthening, stretching and cardio (walking or jogging) exercises to improve their overall fitness.

“No patient in the exercise group had any adverse effects of exercise and there does appear to be a benefit,” she told the online support webinar audience in 2017. “For this reason I’d strongly encourage people with PTS to exercise as tolerated.”

Basically all you can do is manage PTS and live with it as best you can. On your own. Because there are pretty much no support groups. That’s how under-appreciated and little-known this “invisible disability” is.

In Canada, where I live, there are no face-to-face support groups for people living a different state of life-altered normal with PTS. Not one. Nada. In the U.S., there’s one. Just one, facilitated by the North American Thrombosis Forum, in New York City. The support group held its first meeting on June 19, 2019.

There are occasional online support sessions in the U.S. also facilitated by the NATF. As with face-to-face groups, there are no online support groups in Canada.

There aren’t any Facebook support groups for people living with PTS, either. There’s a group for deep vein thrombosis, but not one specifically for PTS. I’m thinking of starting one.

It sucks that there are basically no support groups for this syndrome when so many North Americans alone live with PTS. Because over time it leads to disability that prevents you from doing the things you used to enjoy in life. Depending on how severe you have it, PTS can even prevent you from earning an income needed to even manage living in a new state of normal.

And it’s not just the physical aspects of PTS. This syndrome can cause a never-ending circle of anxiety and depression because of its physical effects on the body and your life. Which isn’t a good thing when you already live with a mental health issue. (I was diagnosed with anxiety disorder in 2008. And I’ve gone through bouts of depression, too.)

Because I have PTS, I made the decision to stay on blood thinners for life. At least with Eliquis, unlike Warfarin, you don’t have to watch what you eat and get your INR tested all the time. I was on Warfarin until early 2015. But I was switched to Eliquis when my body decided it didn’t like Warfarin anymore and my INR kept going all over the map. At that point I could’ve chosen to go off blood thinners altogether and take aspirin instead. But that would mean a 5% chance of having another DVT. Um…no thanks.

The one brighter side of living with this mobility impairment is that I now have a permanent accessible parking permit. I get to park in the “special spots.” You know, the ones marked with the wheelchair and the signs that say, “parking with permit only, maximum $450 fine.” And I don’t have to pay for metered parking on Toronto streets. Which is nice because in some areas it’s as much as $3.50 for a half-hour.

There’s still a lot of education that’s needed about post-thrombotic syndrome. That’s why I’ve written this article. Over the last six years I’ve learned so much about PTS, I like to think of myself as PTS advocate now. And a bit of a patient lay expert on PTS. There’s nothing like lived experience with something.

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