Survivor Spotlight: Beth Williams

 I had hip arthroscopic surgery to repair a torn labrum on February 2, 2017. The surgery lasted an hour and I was in recovery for 4 hours due to severe nausea from Percocet. They gave me Phenergan and sent me on my way. I had a 2 1/2 hour car ride home. I was not told to wear compression hose from my surgeon or the surgery center. I was told to take an aspirin 1x a day, drink plenty of water, do ankle pumps and quad sets every hour and get up and crutch around every 2 hours to prevent blood clots. I was also told that since they put a tractioning boot on my leg during surgery (traction my femur out of the socket to do the repair) that I should expect numbness in my foot. My husband and I were diligent with my pain medication and clot prevention. We even set alarms in the night to get me up and move around. 3 days after surgery, I awoke in the middle of the night with pain in my calf and foot.  My foot was hot and red but not swollen. My foot had been numb since surgery and I thought it was a result from the tractioning boot. I was also having side effects from my pain medications (Percocet and Indocin). I had decided to wean myself off of the Percocet and deal with post op pain because the nausea, hives, passing out was just too much to deal with. I called the surgeon to tell him about my foot and he said it was from the boot and to elevate it above my heart and to weight bear more when on my crutches. Later that day, I began to have shortness of breath and anxiety while lying in bed and talking. I also had hives. My husband called the surgeon again, same day and told him what was happening. The surgeon thought it was an allergic reaction to the Percocet and told me to stop taking them and to take a Benadryl. My hubby asked if he should take me to the ER in case it was a blood clot and the Doc told my husband to use his best clinical judgment. We did not go to the ER. My calf and foot continued to feel tight over the next couple of days. I asked my husband to massage my foot and calf for relief. I was also having shortness of breath, hives, dizziness, sweating and passing out. I called my surgeons office again 6 days post op and spoke to the nurse. She thought I was having an allergic reaction to the Indocin and told me to go to the ER. My husband took me to the ER and told them that I just had surgery and that he suspects I have blood clots and to run tests to find them. They did chest X-rays and blood work and found my d-dimer was elevated. They then did a CT scan of my lungs and found multiple clots in my left lower lung. My oxygen levels were normal. They gave me an injection of Lovenox in my tummy and sent me home. I was in shock and was crying in the ER. How could this happen to me? I did everything right. I didn’t even know that you could get clots in your lungs from your legs. Was I going to die? I was so confused and scared. Would a clot break off and go to my brain while I was sleeping? So many questions unanswered. I came back in the next morning for another Lovenox injection and then saw my GP that day. He started me on 15 mg of Xarelto 2x a day for 3 weeks and then was told to switch to 20 mg 1x a day for 6 months. The next day, while lying in bed, I began having sharp pains in my left lung and chest. I became extremely nauseous and thought I was going to vomit. I called for my husband and told him what was happening and that I was about to pass out. I got tunnel vision, couldn’t hear, and then passed out. He called 911 and they came within minutes and took me back to the ER. I had more blood work and chest X-rays, an EKG and was given another shot of Lovenox. They sent me home. I fought sleep for a couple of weeks following my diagnosis. I was terrified that I wouldn’t wake up, so I stayed awake until I couldn’t. I slept with my lamp on and pillows to prop me up so I could breathe. I was so exhausted and scared. As the days went by, I started to realize that I wasn’t going to die in my sleep. That I was a survivor. The fact that the blood clots that went from my leg to my lung didn’t kill me when it happened meant that I got a second chance. If I were going to heal from the clots I had in my leg and lung, I had to rest. The body heals when you sleep. Plus, not sleeping was creating a vicious anxiety cycle further causing lack of sleep. I began to sleep for longer hours at night and eventually turned my lamp off at night. Each morning I wake up is a gift. Each moment so precious. I’m slowly regaining my strength in my body. Having clots in your lungs makes everything you do a challenge. You feel tired all of the time. There are days where it’s hard to get out of bed. There are days when sitting up, it’s hard to hold up your own head because it’s that tiring. I also have developed vertigo since my PE and get extremely dizzy when I’m over tired. I have headaches everyday. I find if I drink 80-100 oz of water every day that I don’t get so dizzy. Today it has been 4 1/2 weeks since my surgery and 3 1/2 weeks since I was diagnosed with the DVT/PE. My hip is healing great. The lung pain is much less and I am able to do more and more everyday. I will admit I sleep about 10-12 hours a day. I’m that tired. I cry a lot. I cry because I feel like my life will never be the same as it was before. My lungs have been damaged. I just hope and pray that these clots clear up and I don’t have a reocurrence. I am going to see a hematologist in a month to get some genetic testing done. I’d also like to know exactly where my DVT is located. I’ve read that they can do a doppler scan of your body to find out where the clots are in your leg or pelvis.
Thanks for reading my story. I hope that my story raises awareness and helps others so they know what the symptoms are. With so much gratitude, Beth Williams

 

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Survivor Spotlight: Debra Lynn Kleid

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My blood clot was 05/21/2015 where it effected my entire left leg , my abdomen and my lungs.

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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!

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I’ve been through hell and back and if I could help someone I would love to.

Survivor Spotlight: Megan Mcdonald

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
another DVT.
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!

Survivor Strong…Together!

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Survivor Spotlight: Lisa McAninch Caudill

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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. received_10210602529412897He 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!