We all have many stories, including me. This is my blood clot story.
My life literally changed overnight (not to mention almost ended) in the summer of 2012. Life was going as planned – better than planned, as a matter of fact – in late May I quit my job of five years in the non-profit field and prepared to start my career as a 9-1-1 Dispatcher. That was on a Thursday and on Monday morning, instead of finding myself in the communications center of the local police department, I found myself in the intensive care unit of the local hospital wondering, “What happened to my life?” After suffering what I now know to have been a pulmonary embolism (or blood clot in my lung) from a deep vein thrombosis (or blood clot in my leg), I went from running nearly daily to not being able to even walk, stand, use the bathroom or breathe on my own. I could barely eat on my own. Most of my foods made it somewhere near my mouth, if I didn’t fall asleep from the copious amount of morphine being pumped into my system to help ease the excruciating pain.
All the doctors blamed my blood clots on oral contraceptives, which I had been taking for over seven years at that point. It wasn’t discovered until one doctor decided to dig a little deeper, thankfully, that I actually had antiphospholipid syndrome (APS). Antiphospholipid syndrome is an autoimmune disorder in which your body mistakenly produces antibodies against certain normal proteins in your blood potentially leading to the formation of a blood clot(s) deep within the veins of the leg (DVT). Damage to other organs depends on the extent and location of the clot. If a clot travels to your lung it can cause a pulmonary embolism (PE). There’s no cure for antiphospholipid syndrome, but medications can be effective in reducing your risk of blood clots.
I remember vividly the day I was sitting (very uncomfortably) in my doctor’s office when he looked up from his charts and said, “You know, in all my years of practice, you were the sickest I have ever seen someone. You’re lucky to be alive, in fact, but we’re going to figure this thing out.”
Today, I am still recovering from my blood clots and APS, but I’m learning to live – and run – again one day at a time. I spend a lot of time writing about my experiences and trying to share as much information as I can with others so they do not have to experience the horrible effects of this all-too common but nearly unheard of condition. Some days I still cannot get out of bed for more than a few hours and other days, I can run/walk a mile or two with the support and encouragement of my family and a few close friends. I still do not know how I will ever run a half marathon again, but it is my goal to do so. Recovering from such an intense and critical illness is often lonely and I strive to let others who are suffering know they are not alone. For all the times I wanted to give up in the hospital and in the months of aftermath, I am glad I didn’t. There is hope for recovery and as in running and as in life, the smallest steps will eventually lead us to our greatest triumphs.
Follow
I’m so glad to hear you are doing okay. I know you have been through alot the past 2 years. I first found your blog about 2 years ago when you sent me my first running log. I used it for the entire year as I trained for my first half marathon. My computer crashed and I lost all of my saved favorite blogs including yours. I just happen to come across your blog again recently. 🙂 I had a medical scare about this time last year and it changed my life. LIfe is precious. Glad to have come across your blog again.
Hi Tracy! It is so great to hear from you. I don’t know how I missed this comment from almost a month ago! I remember and thank you so much for stopping by and reconnecting with me. I am sorry to hear about your medical scare and I truly hope you are well. I wish you the best! 🙂
Hi Sara! I just found your blog and I, too, suffered from DVT and pulmonary embolism. I was hospitalized in late October. Fortunately, they caught it early for me because my brother suffered from the same thing two years ago. They misdiagnosed him for over a month before someone figured out he wasn’t too young for this! We have a genetic abnormality that caused it, plus I was on birth control. I’m just now starting to feel a little bit like normal again, but my lungs have nowhere near the capacity they used to and I can tell that the clot is still in my leg. I’m on warfarin for a year. It was good to find your blog, to realize that it’s not so uncommon to find someone my age with the same issue. Good luck with your recovery! I’ll check back in with your blog soon!
Hi Stephanie! Thank you so much for stopping by and sharing your story! I will check out your blog too. I am so glad they were able to find out what was wrong with your brother (even though it took so long) and that they caught yours earlier! If I may ask, what is your genetic abnormality that they are only keeping you on warfarin for a year? I hear a lot of people are not given the option to go back off if there is a genetic or autoimmune factor in existence (as in my case). I understand how you feel about recovery and it taking a long time to feel back to normal. I still have days that are tough. Check out my site dedicated to recovery from blood clots too if you get a chance (http://bloodclotrecovery.net), I would love to have you share your story with that community too! I am so grateful to connect with another survivor. Thank you so much and take care. Talk to you soon!
Hi Sara! I have both factor V and factor II abnormalities. It does make me very nervous to think about going off Warfarin. I want to. I don’t like taking medication, but it scares me to think about the possibility of having another clot.
I tried to go to the link in your comment, but it said there was in internal server error. 🙁
Hi Stephanie! I am so sorry my other site is down at the moment, but should be up in the next day or so. I’m dealing with some traffic issues so hopefully I can get it resolved quickly. I’ll drop you a note here when it is back up and running!
I understand your hesitation and fear. I am on warfarin for life due to the APS, but really wish/hope there will be another way! Thanks for stopping by.
http://bloodclotrecovery.net is back up and running. Thanks for your patience!
Hi my name is jessi ca im 30 yrs old i had a car accident in 04 & have had 4 ankle surgery since then i have Blood flow & circulation problems in my foot from the surgery and have screws,pins& metal plate in my ankle my foot& ankle swell all the time but in the last few weeks my knee.& calf has been hurting & behind my knee & my veins have become really noticeable when i walk the pain gets worse and eases up when i sit down im just wondering if i could have a blood clot in my leg ive always had pain with my ankle but not in my leg should i be concerned??
Hi Jessica. I am sorry to hear about the car accident. Since you are recovering and have had surgery, yes, I think you should at least get this checked out or call your doctor. Having foot/ankle/knee surgery (or any surgery) is a risk factor for blood clots. I hope you are well, and I hope you have contacted your doctor. Thinking of you and wishing you well.
I have been a competitive runner since the age of 6 and completed 5 marathons and many half marathons. I used to train 2-3 hours a day. And then at the age of 29 I got DVT in my lower leg. My body finally said slow down!
It’s been almost 2 years now and I am no longer a runner. I have taken the time to grieve for that part of my life and let go of the anger and self criticism associated with what happened. Acceptance came when I discovered I am far more than just an athlete and my body is perfect for me.
I am proud to say I have retired from running. I still hang my medals on my wall and recall the wonderful events and experiences I’ve had.
These days I am on Xerelto for life as I have been diagnosed with genetic protein C deficiency. I exercise whenever I feel like it by way of cycling or swimming and I listen to my body – if it tells me rest, I rest.
I wish the best for everyone in recovery. Emotionally and physically. Xo
Hi Teresa! Thank you so much for reading and for sharing your story. Wow! Your words are very powerful for me. I, myself, am not sure if I am still a runner, although that will always be a major part of my life – at least, the memory of it. Thank you so much for your words. They give me hope – even if I don’t run again – and something to think about. Thank you.