I’m 36 years old this year. It’s been almost 20 years since my first DVT.
I was ice skating, I fell over and broke my tailbone. Fast forward a couple of weeks and I was in hospital having surgery on my belly, waking up with a huge left calf. This was my first experience with a clot, at 17 years old.
I was on Warfarin for three months, then I moved on with my teenage life.
My left leg never completely went back to its normal size and I thought nothing of it.
Every three years since then I had some surgery on my belly, for ovarian cysts and adheshions (scar tissue) .
The day before my 30th birthday I woke up to a swollen right foot and I knew it was DVT.
They put me on six months of Warfarin and then I was told to take Aspirin every day.
I think i was just glad that my calves were the same size
Two years later, after a 6 hour car trip, I felt that pain in my left thigh. Yep, it was
My left leg had residual clotting from when I was 17, incompetent valve, post thrombotic symptoms. I had clotted in my calf, thigh and groin.
Eight months ago I was referred to a new vascular surgeon. My legs were cramping and swelling all the time. They hurt every day and I was housebound. I still am in many ways.
After meeting Dr Freeman, I was sent for ultrasound, ct venogram, and every blood test imaginable to get to the bottom of this.
One thing that never was mentioned was during most of my follow up scans my IVC was invisible or missing.
After my first DVT , I noticed varicose veins creeping up my pelvis, side and leg.
Dr. Freeman found my IVC missing, congenital he thinks.
My body is blocked up!
I held hope for some kind of surgery to fix the blockages. I read about stents and I really wanted to have hope I could get better.
The doctor said that there is nothing more that he could do. There is no IVC to put a stent in…. my body has compensated by the crazy vein system inside and outside of my pelvis and trunk.
I am on Xarelto for life now and I have my compression stockings to wear everyday for life now too.
I can’t walk much anymore and I can’t stand for long before my legs start to swell.
So many mental health issues come with being chronically sick also with many sleepless nights wondering why my legs don’t listen to me anymore ( I’ve had a few falls where my legs just didn’t move) or sleepless nights because of cramps (never knew you could cramp on the front of your shins)
I struggle to put clothes on the line. I have to cook on a stool. I cannot wear boots because one side always falls down….LOL!