the f*cking Blood Clots

When I say I likely have had upwards of 14 DVTs, I’m being conservative. The most astonishing part? All but one of them—the very first—occurred while I was on blood thinners.

I have a family history of blood clots and carry the Factor V Leiden mutation, which makes me more susceptible. I’ve cycled through medications like Xarelto, Eliquis, and Fondaparinux, and I’m currently on the highest dose of Lovenox injections 2x daily. Just in the past two months, I’ve accumulated at least six shiny new DVTs.

It’s disheartening to realize that, despite being my own best advocate, it often feels like it’s not enough with many doctors. The constant back-and-forth about a more permanent solution has left me feeling frustrated. I’ve endured countless superficial and deep ultrasound-guided IVs, only to have them fail after a single use, and worse, leave me with a shiny new clot. If they had truly listened to my concerns about my body and my veins due to the hEDS, I wouldn’t be left without a single usable vein in either arm—everyone has become non-compressible due to DVTs or SVTs from failed IVs. 

Navigating this medical landscape feels like an ongoing battle against both my body and the healthcare system. Despite my hematologist’s insights into the multitude of factors contributing to my clots—such as the Factor V Leiden mutation, hEDS-related vein issues, dehydration, and the complications from IVs—I often find it challenging to get the support and understanding I need. It’s a constant struggle to find medical professionals who will truly listen to my lived experiences and take my concerns seriously.

I sincerely wish for more effective treatment options and a better understanding of these complex conditions, not just for myself but for anyone else facing similar challenges. It’s important that we advocate for a healthcare environment where patients feel heard, validated, and supported in their journeys.

FUN FACT: Every time I get a clot, I have to wait three months before I can undergo any medical procedures or surgeries that require coming off blood thinners. This really impacts my quality of life, as I have a range of procedures I need to investigate deeper into my conditions, not to mention a broken nose that’s been waiting for over a year to be fixed and wrist surgery that’s been postponed for two years—all due to a blood clot getting in the way each time.

Comments

Post a Comment

Popular posts from this blog

So what is wrong with you anyways? Feat. The Roster

I remember it all too well, it was rare I was there- Feat. "The Roster" I never thought I would reach that level of comfort to put my raw self out there like this, But this is what weeks to even months can look like for me, navigating and dealing with the multitude of chronic conditions during a flare from one more of my multitude of diagnoses. I feel unreliable as a friend and as a worker. I live in fear that I will wake up and feel sick which will ruin my whole day...work, weddings, vacations, giving my dog attention...which to be quite frank, likely triggers some of my flares. What triggers flares? Stress. I don't want to date because I don't want to share this horrific part of my life. I am a big fake it till you make it advocate...for a long time I didn't think I was "sick enough" to talk about it on the internet, but in my most recent hospitalization lasting almost 2 months, there's no such thing as sick enough. My quality of life is not what i...
Read more

Cyclic Vomiting Syndrome ...the worst of all

Image
 The biggest beast of them all. Cyclic Vomiting Syndrome (CVS) Picture this...its 3 am and you pop up in excruciating pain and actually know you're about to endure the most exhausting days of your life as soon as the first vomit happens. It's unique, I can feel the difference when vomiting if it will be an episode or if it is not an episode and just one of my body's many comorbidities acting up. The above table is a great breakdown of the phases but it is simply a break down...the video below which I will credit was from the NORD site is a great explanation of the episodes them self.  Though it does not get into the pain of the retching when there is nothing left or the fear of the wait time before receiving any relief due to stigmas in the ER and common misconceptions of those doctors who don't take the time to review your history. It is for this reason that I recommend that anyone in my shoes, makes a medical binder . More on that later; check out the video I found b...
Read more

Age 6...

Growing up, I faced the world with a mix of clumsiness and resilience. My mom, convinced I was just accident-prone—especially after two back-to-back broken arms—decided to enroll me in karate. She hoped it would improve my self-awareness and balance. Ironically, I never got hurt in karate; instead, it taught me grace, tenacity, and the ability to carry the weight of my struggles. At just 7 or 8 years old, during a visit to UMass Children's Orthopedics, I first heard the term "Ehlers-Danlos Syndrome." Tragically, that was also the last time it was mentioned. Despite my myriad health challenges growing up, no doctor connected the dots. It wasn’t until 2019, during a desperate search for answers as my health rapidly declined, that I revisited this diagnosis. Although it was brought up occasionally, I believed it only affected my joints and mobility. What I didn’t realize was that hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder that impacts the entir...
Read more