Living with Antiphospholipid Syndrome

In 2012, I experienced a pain in behind my left knee that felt like someone put my skin and muscles in a vice-grip. I thought it was the recurrence of a running injury, and I decided to rest for the weekend. I soon experienced pain in my side that made it hard to breathe and impossible to lay down flat to sleep. It felt like the air was being slowly, but surely sucked from my lungs as more time passed. At the insistence of my primary care physician, I went to the emergency room, where I was diagnosed with a blood clot in my leg (deep vein thrombosis or DVT) and a life-threatening blood clot in my lung (pulmonary embolism or PE). I was admitted to the intensive care unit, where I stayed for several days as doctors worked to stabilize my situation and waited to see what would happen. When I eventually went home, I faced an extended recovery period that was unlike anything I ever expected.

In a lot of ways, blood clots were just the beginning for me. Shortly after I was diagnosed with DVT and PE, I was also diagnosed with antiphospholipid syndrome, or APS. It is an autoimmune condition in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. APS – and to a lesser extent hormonal birth control – was to blame for my blood clots.

It was early June, and since June is APS Awareness Month, my internet searches revealed quite a lot of information about this disease, although it still seems like there is still more to learn. APS affects women much more than it does men, and not a lot is known about how a person acquires it. It is believed to be triggered by an environmental factor, such as an infection in an individual with a genetic makeup that makes him or her more susceptible to the disease, or from an autoimmune condition, like lupus or Sjogren’s syndrome.

Doctors don’t know why I have APS, or why it triggered such extensive clotting in my body. Some people with APS do not develop blood clots at all, however, antiphospholipid antibodies are present in 15 – 20% of all cases of DVT, and in one-third of new strokes occurring in people under the 50 years old (Source). In women, antiphospholipid antibodies can be a major cause of recurrent miscarriages and pregnancy complications. APS can also lead to numerological symptoms like chronic headaches and migraines, heart disease, and bleeding as a result of low platelets, which is another problem that I have encountered. In very rare cases, excessive clotting can lead to widespread organ failure and what is known as catastrophic APS, or CAPS. There is no cure for APS to date, and even though the antibodies can go into remission, the disease never goes away.

I don’t often think of myself as living with a chronic, or long-term disease, but in reality, that is what I am doing. I am fortunate that APS has not caused any additional problems for me, but there are ongoing concerns about my blood’s increased tendency to clot. As a result, my treatment involves taking anticoagulants, or blood thinners, for the foreseeable future, along with some other supplements to maintain the health of my blood, including folic acid, vitamin k, and iron. I also take aspirin, an antiplatelet, to help prevent stroke. I take the blood thinner warfarin, which is the only suitable treatment for me at this time, so I have to get my blood’s PT/INR monitored regularly through vein draws at my doctor’s office to make sure my medication is working properly. Depending on how I am doing, I could have my PT/INR monitored weekly, or every few weeks, it just varies. One thing is for certain though, with warfarin, I can never stop monitoring my blood to ensure its effectiveness, and my safety.

Antiphospholipid syndrome, and blood clots, have changed my life in a lot of ways. I go to more doctor’s appointments and manage my treatment to the best of my ability, which can be time consuming. Managing APS is often the same as managing my future risk for blood clots. I need to take my medication as prescribed and stay in communication with my healthcare team about any changes in my body, or any new concerns I have. I need to talk to my doctors and take precautions if I have surgery or am hospitalized, plan a pregnancy, or become pregnant. I need to remain vigilant for signs and symptoms of blood clots, stroke, and heart disease, and try to make or maintain the lifestyle changes that promote health and happiness, such as eating well, hydrating well, exercising on a regular basis, and making time to de-stress and relax.

Living with APS can also be challenging emotionally, and there are times when I struggle with that more than the physical care I undergo. I sometimes worry about the long-term repercussions of having this disease, and wonder what, if anything, might happen next. Will I wake up one day and have a stroke? Will my heart fail me? Will APS lead to another complication that is not so manageable? I wonder why I got APS in the first place, and I wonder if I could have done something to prevent it, before it led to life-threatening blood clots. It can be hard to overcome these thoughts, and they can bring me down, especially when I am overwhelmed and facing stressful situations, or when I have concerns about something my body might be trying to tell me.

I manage my feelings about living with APS in two ways. One, I have an excellent medical team, including a hematologist, who manages my ongoing care. I get blood work done about every three months to monitor for additional problems, or concerns. I see my doctors regularly for follow-up appointments, and I do not hesitate to call if I have a problem in-between those appointments.

Second, I try to be positive about what I have been through, and where I am going. APS is different for everyone, just like blood clots, and my experience will not be the same as the next person’s experience. If DVT and PE are the worst complications I experience as a result of antiphospholipid syndrome, I know that I have already survived the worst. I continue to hope that perhaps the worst really has come and gone, and each year that I do not have another complication, my hope continues to grow.

The most important thing for me to remember is that although I have an illness that will never go away, I can still live a happy, healthy life. If you have been diagnosed with APS, you need to understand this too. APS is serious, and it is scary. An APS diagnosis can feel like the end of your life, and yes, it can lead to some serious consequences. There is no cure now, however, APS is manageable and treatable in most instances. Make sure you have a specialized medical team, or doctor, and make sure you learn as much as you can about antiphospholipid syndrome. Take care of yourself to the best of your ability, and if you’re struggling to process your diagnosis or treatment, talk to a professional who can provide you with strategies and coping tools for managing chronic illness.

Where to Go for More Information

There is hope for healing, and you are not alone.

 

 


Reader Writes In: Do you have antiphospholipid syndrome or another clotting condition? Share your story in the comments below.


Read more about antiphospholipid syndrome on my blog.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Getting Out of the Deep End

Can you believe it? 2017 is almost over and I don’t know about you, but I am ready to say goodbye to this year. I don’t like to rush things, but I am ready for a new beginning. A lot of 2017 felt like holding my head above water as a struggled in the deep end on the sea of recovery.

Don’t get me wrong, 2017 was an amazing year, and I did some things that I never thought I would since my blood clot diagnosis. I conquered one of my greatest fears – traveling abroad on blood thinners – when I flew to London and toured the UK for 11 days. Among the highlights of things I saw was the stone circle at Stonehenge, the Roman Baths, countless castles and cathedrals (my personal favorite), and the city of Edinburgh in Scotland.

Traveling overseas was a great fear of mine, primarily because of, “what if something like a blood clot happened so far away from home?” From there, I could think of a thousand other things that could go wrong on an overseas trip. From the long flight, to a blood clot, to an unexpected injury, illness, or other unforeseen natural or planned disaster, the bad things that could happen added up quickly in my mind. I worried a lot about whether or not I should go, and about what I would do if the unthinkable happened. I planned and prepared as best I could, and finally decided I couldn’t pass up the opportunity of a lifetime to see things that I had only read or dreamed about. I almost regretted my decision to go after being delayed on the tarmac – on the plane – which turned my eight hour flight into a 12-hour ordeal, but once I made it to Europe, I was able to relax and have fun.

Until the second to last day of our vacation when I had a very scary – and my personal “this is the worst-case scenario”  – experience occur. Much to my own disbelief, I fell and hit my head against a stone wall at the Tower of London. I had an immediate goose egg, blurred vision, and headache. I knew I needed to seek medical attention, and I did, just as soon as the taxi could get me to the hospital. I think I was too terrified to act, but thankfully, I had my family with me throughout the entire process. I had a CT scan at the hospital and was partially admitted for observation for 11 hours. I did not have bleeding, or an internal head injury. The biggest worry was my flight back home due to potential not-yet-seen bleeding complications, which did not happen. The flight home ended up going a lot smoother than the flight there. Experiencing one of my worst-case scenarios – and having a good outcome, because I was prepared for the possibility – has definitely helped to ease my fear and anxiety. Bad things can happen, even far away from home, and I will be okay.

It was a great year for my personal growth, as well as a patient leader and blood clot advocate. I am thrilled to say I was able to speak to two very different audiences this year, both which challenged me to think about how I share my story in new and different ways. One audience was chemists and medical professionals in San Diego, California and another was women with diabetes in Washington, D.C. As a result of my experiences this year, I feel that I am better prepared to continue providing information and support to even more people. Blood clots can and do affect anyone, and I hope that by sharing my story, I am able to provide life-saving information to someone who may not have known about blood clots before.

For BCRN, 2017 was a great year, and I am extremely grateful for your support. This year, there were over 300,000 page views on my blog. Thanks to you, I have gained important insight into the issues you want to talk about most, as evidenced by my most popular posts about recovery: how long does it take and what does it look like? I wrote them so long ago, in the midst of my own recovery, and I am so glad to know they provide relief and understanding for you still today.

Like any year, 2017 also saw it’s fair share of challenges and setbacks. After a few years of normalcy, I experienced some health challenges this year that challenged my resiliency and positive outlook. In August, I had a major bleeding incident that landed me in the ER for treatment. I’m still recovering from that by trying to stabilize my INR and boost my iron levels. Yesterday, I had an ultrasound to check for a second blood clot in my left calf. There was not one, thankfully, but it scared me to think that there might have been. In addition, I watched someone very close to me suffer from a traumatic brain injury while on blood thinners, which was very different from my own experience in London. Thankfully, that person is now recovering, but there were some scary times in the last months of this year.

These experiences reminded me of what I have been through in the past, and of just how fragile health our health is. These events have impacted me more than I anticipated, and they have been difficult to share outside of my private group (you should join us there, if you have not already). I’m still reeling from my experiences in a lot of ways. I know, however, I’m not alone, and many of you have already been down this road of uncertainty too. Through it all, I remain grateful for my health and grateful for the health of my friends and family. In just one instant, everything can change, and the end of this year made no mistake about reminding me of that.

As I look ahead to 2018, I don’t want to stop growing, sharing, learning, and exploring. I want it to be the year of “new beginnings” and “big things.” I want it to be the year of smooth sailing, too, sailing above the water. I don’t quite know what that means yet, but I do know that I have big plans for BCRN, and I hope you will join me for the start of them. I want to write more, share more, and do more to continue to provide you with the best support available if you’re recovering from a blood clot. You, my readers, are the driving force behind the work I do here, and I can’t wait to see what’s in store for us in the year ahead. Let’s get out of the deep end and together, let’s forge ahead into what the future holds.

My wish for you is that you have a wonderful holiday season, with the people that matter the most to you. If you’re in pain, or you’re struggling with your health: you are not alone. No matter how hard it gets, don’t ever get up, and remember, it does get better in time. We’re still here, and we haven’t drowned yet. I wish you health, happiness, and a wonderful 2018.

There is hope for healing and you are not alone,

 

 

 

P.S. I couldn’t leave you without a few pictures from my adventures this year. Here’s a recap:

 


Reader Writes In: How was your year? What are you most looking forward to next year?


Does the new year have you worried about making commitments and promises that ultimately end in disappointment? Find out why I don’t make New Year’s Resolutions.


New: I was recently invited to be a part of the Amazon Influencer program to share some of my favorite products with you. These are products I personally use on a regular basis. They include things like bandages, pill cases, and medical IDs. {Disclosure: I may be compensated for  purchases made from my shop.}


 

The Great Blood Thinner Activity Debate (“I can’t do that, can I?”)

The Great Blood Thinner Activity Debate

For those of us on injections, warfarin or other blood thinning medications, whether or not to engage in physical activity, at what time and for how long remains a constant source of personal and, as I have noticed, even medical debate. What forums, articles and websites exist are full of questions about can I do this or that, when can I do it  and for how long can I do it, and they accumulate into what I like to call The Great Blood Thinner Activity Debate (“I can’t do that, can I?”)

I remember quite vividly sitting in my doctor’s office one week after I was discharged from the hospital for my first follow-up appointment when I asked him, “Can I run again?” He assured me I could and would in fact if I so desired. “Can I run again now?” I questioned. He actually said I could run anytime I wanted, but my body would most definitely let me know when I was ready and when enough was enough. I set out that weekend to walk to the mailbox and back (thinking I would leave my oxygen tank inside for about 10 minutes) and I made it about six steps before my body said, “Enough is enough.” I retreated to the air conditioned living room, oxygen and a seat on the couch. I hated being inside, but I wasn’t ready to be outside in the dog days of summer, let alone on my feet for more than a minute or two. Emotionally, it was a setback I wasn’t at that time prepared to deal with; physically it was exactly what my body needed.

As the weeks and months went by, my doctor and I made several attempts to transition from injection thinners to warfarin, but the attempts failed and I remained on injections for about nine months since my diagnosis. It was only recently that I made the transition to warfarin and was able maintain healthy INR levels. It has taken me even longer – about 12 months – to get back to running with any degree of regularity and there are still days when I wonder, “What the heck am I doing?”

Once you are required to take blood thinners, especially if it is a lifelong prescription, you start to view life and the activities of it differently. A side effect of warfarin, combined with increased INR levels, is the potential for internal bleeding that can be dangerous, and even life threatening. The fact is, blood thinners do save lives because they treat or prevent serious blood clots; but they also pose one potentially serious side effect, which is bleeding because they slow the clotting of blood.

I don’t believe you have to stop living your life the way you want to when taking blood thinners. I believe we can still participate in the same activities we did before – or even new and better ones – we just have to be cautious of the potential side effects. It doesn’t mean we have to stop living, after all, many of us feel like we were given a second – third or fourth – chance, why not spend it how we want? You can still run, bike, hike, ride roller coasters, swim, travel, ride horses and learn archery along with a myriad of other activities. While a certain level of caution is necessary, especially if we hit our heads or see unusual bruising, there is nothing on the prescription bottle that says, “People taking this blood thinner should not___________.” I personally was never given a restriction on any activity, just to listen to my body – I would know what I could do, when I could do it and for how long. So far, that has been true.

Most of the time, bleeding caused by blood thinners is not serious or life threatening, although it is worrisome and inconvenient. Some examples of non-life-threatening bleeding are nosebleeds; a small cut while shaving with a razor; or minor cuts or skin tears. All of these types of bleeding may bleed longer than normal, but are not necessarily cause to panic and seek medical attention because they are superficial and can usually be controlled with added pressure apply to the wound for a longer amount of time. It takes me about 20 minutes to stop a nosebleed, which sometimes happen with the slightest wrinkle to my nose. Several products also exist to aid with clotting such as bandages, gels and powders like QuickClot, which aid in blood clotting, but do not disrupt the blood’s natural clotting abilities.

People taking blood thinners do not need to stop the activities they once enjoyed, especially after we are feeling well enough to participate in them again. They just need to take some extra precautions to maintain safety and peace of mind. For example, we do need to be cautious about things like high risk sports that may result in a head injury, but we do not need to stop them. We need to take extra precautions to increase our safety like wearing proper head gear when biking; gloves when gardening or working with tools and taking care with a few extra minutes when trimming hair and nails. Many people taking blood thinners also wear a medical alert bracelet to let others know they are on certain medications – like first responders in an accident – which can really add to peace of mind. You can find a myriad of medical alert bracelets on the internet and even find ones specific to sports and physical activity through RoadID. It could really save your life in an emergency or accident, especially if you are not able to speak for yourself.

No matter what activity we participate in, accidents do and will occur and sometimes these can produce superficial bleeding like from a cut or nosebleed and sometimes it could be serious, like if in a car accident or fall down the stairs. Just because we are taking blood thinners does not mean we need to stop or stop considering participating in activities that are viewed as dangerous. We can still participate in them, or even learn them for the first time, with a few extra safety precautions and common sense awareness. If you see unusual bruising or sustain a serious head or abdomen injury, you should contact medical professionals. There is no reason to stop living – even the life we’ve always imagined – when taking medications that undoubtedly save our lives. After all, it’s why we’re still here.

Share your story. Does taking blood thinners impact your decisions about normal day-to-day activity? What about extreme activities or sports? Have you given something up because you are worried about life-threatening bleeding? Did you start an activity you had always dreamed of participating in because of taking blood thinners?

 

There is hope for healing and you are not alone,

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