Arterial Venus Malformation…?

“Wow, an AVM!!!” The vascular surgeon proclaimed as I sat in my emergency department room. “Look! Look!” She was obviously amused and slightly baffled, I lost her voice almist my racing thoughts. A what? “And you’ll need to be seen at UCSF immediately”. (As if that’s a thing). My something cool suddenly turned to something scary.

Ever since I was young I had excruciating left leg pain. Pediatricians and doctors wrote it off as growing pains, though the pain did not dissapaite when I stopped growing, in fact, it continued to worsen, though unsure if masked by a torn meniscus at age 12. However, lucky for me I guess the MRI that showed the tear when I was 12 also showed vascular abnormalities which sent me to UCSF’s vascular anomalies clinic when I was 13 to be studied by a good handful of doctors who still had little clue about the Venus malformation or what to do with it then, and was told to keep an eye on it.

Back to present day. We are not without hope.

2 1/2 years ago I went to the ER for what I thought was a DVT. My leg, about twice its normal size, had a pea shaped knot protruding from the crevice of the knee or the “poplitial fossa” area. I went in and they discovered the AVM through diagnostic imaging of an ultrasound, x-rays, and Ct-angiogram. Now I’m back under the supervision of outstanding doctors, and while unfortunately we are at a standstill with me being on Eloquis (there’s not much surgery wise to fix it we can do while I’m on it) I have hope we’re on the right track for me to lead a less painful life.


Bilateral Pulmonary Embolism

On July 1st, 2017, I was once again (I say once again as you’ll learn later about prior health conditions) plagued by tachycardia (fast heart rate) of a sort that made my body tremor. 250 bmp. Unbelievable. I didn’t think it could be true and watched my pulse ox steadily flash its bright red numbers. I laid down in hopes to lower my heart rate but it’d drop into the low 30’s. I couldn’t win.

I knew something was very wrong. I felt like I was going 100mph in my car on the freeway and then, out of nowhere, a cliff lay just feet ahead and try as I might to sink my foot into the break peddle, the car would skid and screech and twist but it continued to approach the cliff at alarming speeds. Or as others note- “impending sense of doom”. I was convinced the world was going to end soon.

Sharp pain severed my side and sudden intense shortness of breath hit me like someone had beaten my stomach. Then vomiting came with the intense pain. Now, the car was so close to falling off that cliff.

I finally managed to grab someone’s attention (re: I live in an assisted living environment with adults, most of which are conserved, who struggle with their mental health. I, though not conserved, struggle immensely with an all encompassing depression and anxiety, PTSD flashbacks and severe suicidal thoughts and previous attempts and self injurious behavior). Slowly, we got into the van and headed to the hospital for the FIFTH time, though now per request of my doctor we are going to a different hospital.

I walked in, sheer panic written across my face. I was seen in triage immediately. I could not sit I was in so much pain, riddled by such overwhelming anxiety, tears plummeting down my face, writhing in my seat– car was inches away from doom.

They quickly put me in a room, sent me to CT, gave me dilaudid for the pain, zofran for the nausea, and I started to get a little color back and come back to life

“Room 2 has a PE” I heard through the bustle of monitors and busy emergency room noises. I prayed I was not in room 2. I was tired. So tired. I wanted to go home.

The doctor walked in. I was in room 2. “Do you know what a PE is?” The doctor asked? To his surprise I said yes. I am familiar with PE’s only  because I was made familiar with DVT’s per a pre-existing congenital condition – an AVM (Arterial Venus Malformation) of my femoral artery that transverses the femoral bone. That was discovered about 2 1/2 years ago, and for another post entirely…… however, was worth an honorable mention here.

Bilateral pulmonary embolism. 26 days later and I’m home on Eloquis. Scary.  The hospital was difficult yet I learned so much about who I am during my near one month stay there, and I can’t wait to write more about it!


Ps here’s a neat article shared on one of my support groups about Pulmonary Embolisms


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