My blood clot was 05/21/2015 where it effected my entire left leg , my abdomen and my lungs.
I woke up one morning with heaviness in my leg and shortness of breath. My heart rate was high in the 150’s but my oxygenation was ok. I went to the hospital where I was placed on Coumadin and Lovenox. After several days they contacted Vascular Surgery to do a Thrombolysis with angioplasty which would take 2 days to do. That was a painful procedure as my leg was completely clotted off or the veins collapsed and they didn’t do enough sedation. I spent 8 days in the hospital with 2 days in ICU. I survived and lived to tell the tale and want to spread awareness to others!
I’ve been through hell and back and if I could help someone I would love to.
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!
My name is Lisa McAninch-Caudill and I am a pulmonary embolism survivor. My story starts before I was diagnosed.
In November of 2008 my brother, Scott, passed from pulmonary embolisms, which he was misdiagnosed by three different doctors. He was thirty -two years old. I became a adamant advocate for blood clot awareness, not even aware that I would face this same life threatening diagnosis.
In August 2014 I was plagued with hip and back problems, thinking I was suffering from my fibromyalgia, which prompted doctor’s visits and chiropractor visits. Even asking the doctor at the after- hours clinic if I could possibly have a blood clot in my leg, and he said,” No, it is just your fibromyalgia flaring. Go home and rest.” So I did. Within a few days I began to get sick, feeling short of breath, and just not feeling right but could not pin point a reason. Not sure what was wrong, I went to my family doctor and was diagnosed with bronchitis, and was given a steroid shot, antibiotics and inhalers. After a few days with no relief, I went back and was sent for a chest x-ray to check for pneumonia, mind you, this was early morning. I was also having a odd pain in under my left arm in the area of my arm pit and upper ribs, was told I had probably strained myself from coughing, go home and use heat, and again, that is what I did.
As the day went on the pain increased and I thought I had pleurisy, I had this when I was much younger and it is painful, so I told my son, ” We need to go to the ER, because I have had this before and it is painful. Lets go before it gets worse.” Little did I know that this would be a life changing event. When I arrived at the ER I was seen by one of the best doctors in the ER department. He listened to my lungs and said, “I think you might have pneumonia, lets do an x-ray.” Which I replied, “I had one this morning and I haven’t heard from it yet.” He left and came back right away and said, ” I need you to stay calm, but you have no pneumonia, but you are showing signs of blood clots!” I was immediately given heparin in my IV and sent to ICU, and my oxygen dropped through the night. If I had stayed home another night the likely hood of me not being here was even greater, because the odds were already stacked high against me. I did not find out until much later that both lungs were full of clots along with my bronchial airways, and was told many times, you should not be here. Folks, that is a lot for the mind to comprehend, you should not be here! Talk about a mortality awakening!
I was also positive for Factor 5, which was inherited from my father, initial diagnosis after lab work for both parents. My other brother and my son also tested positive, and we are assuming that my brother who passed was also a carrier.
After a week in ICU and pure shock and denial I was sent home. Yep, sent home, and scared to death! What if another embolism happened while I was sleeping? What if I bleed out while taking Coumadin? I feel short of breath, should I run to the ER, because I know this is it! Eight months I suffered from horrendous anxiety. I did not think I would live through this horrible ordeal. Why did I get to stay and my brother didn’t? Why was diagnosis and treatment easy for me and not him? I was later diagnosed with PTSD, survivors guilt, and of course, anxiety.
Two and a half years later, and I am still here! I thank God everyday, all day, several times a day for allowing me to stay. I still have guilt over my brothers death, but I have also learned that it was something I could not control, and it was out of my hands. The anxiety is still there, not as bad, but there and it always will be, and I have to cope with that on a daily basis, but I am here!!
I AM A SURVIVOR!! AMEN!