In Mid December of 2012 I had surgery for Achilles Tendon repair and removal of bony growth on outer side of left ankle.
The cast was too tight! Twice I had new casts applied for this reason. It was a story winter and we were making appointments in-between ice storms.
I had to keep it elevated to keep the swelling down. This limited my mobility. As I recovered from the surgery, I did become more active around the home on my one good leg. I was not allowed to step on the surgical foot for 12 weeks or risk damaging the repair.
In early January 2013, I was out to dinner at a restaurant. I was still using the wheelchair as the ice really presented a danger for me being on crutches. I was so uncomfortable at dinner that night, I had to stand up to relieve my pain in the groin area and my lower back region. I was never so glad to get home and be able to lie flat to get the pressure off inside of me. I attributed this to the cold of winter and my previous back surgeries.
I continued to try to stay active at home and at one point, needed to see something in our business office in the downstairs basement. I was able to get down there and do my chore, but when I was coming back up the steps, I was crawling and became so winded that my husband brought a chair to the top of the steps for me to sit in and catch my breath before I could go back to my bedroom. I was surprised at how “out of shape” I had become in such a short time!
Over the next day, I noticed that my thigh above the cast was extremely swollen. In my simple mind, I figured it was because the swelling from the leg had nowhere else to go but above the cast. I focused on elevation of the leg, but the leg had become painful to the touch and grew even larger over the next day.
That night, I began to realize I needed medical attention. My problem was that my surgeon worked for an orthopedic group that had their own Ortho hospital. My doctor did not have privileges at any of the regular full service hospitals. I knew I needed to see a medical doc for the swelling….thinking cellulitis might be my problem. Here, I am embarrassed to admit that I had worked in the medical industry for years in Reception, Switchboard & Insurances. I had a base of knowledge, but it failed to kick in to assist me in thinking on my own situation through.
Since it was the middle of the night, my husband and I made plans to go to the Emergency Department the next morning. He was used to me making the big decisions about my health.
I share this preamble to show how easy it was to dismiss my very urgent symptoms.
I was taken to an exam room before my husband parked our car. I was still unaware or in denial about the severity of my situation. God, Above, was with me that morning. Four things happened that saved my life.
1) The Physician’s Assistant on duty that morning was well versed in DVTs & PEs.
2) My family doctor had come to the hospital to see his inpatients and saw my name on the computer for being in the ER. He came to see me first.
3) The Vascular Surgeon and his partner were in hospital for a procedure on another patient that day. They evaluated my test results and me immediately.
4) Because my leg had been operated on by an outside surgeon, no one wanted to touch it. Finally an Ortho group on call came to look in on me. One of their Physician’s Assistants just happened to be an old friend…I had even gone to his wedding years earlier! He stepped up to the plate and had my cast cut as soon as he could get near me!
My next week was a blur. I was in ICU for two days. I remember bleeding out from the entry site of the Thrombolysis procedure that had been done to clear the clot from my hip to my foot. The following day, they went back in my vein and placed a stent to help unkink my vessel and hopefully prevent further clots.
I remember that they suspected the blood thinners of starting an ulcer in my stomach which caused it to bleed.
I was scared, but refused transfusions. Labs were done around the clock. I had previous experience of helping a patient who needed regular transfusions and I knew my numbers still were not critically low.
I remember being on Oxygen for my PE filled lungs. I remember getting winded just getting to the bathroom with my walker for which I used as my crutch. But I just kept going…knowing I wanted to leave the hospital and be in my own bed!
I needed to get out of the hospital to attend a financial hearing regarding my mother and her nursing home. I had waited over two months for this appointment. I begged my family doctor and made promises to return if anything went wrong. It was during this time that he told me how close to death I had been. When he wiped a tear from his eye, I began to understand the past week’s reality.
I left the hospital, attended the hearing, had my foot and leg attended to by the original surgeon. The hospital had only removed the cast…nothing else. I became caught up in the Coumadin/Warfarin cycles of lab test, waiting for phone calls, and adjusting the meds. I never really got settled with the blood thinners, so I was continually going for more lab tests every few days.
It was after I was home that I settled into a deep depression. Why had I survived when so many others do not? What purpose did God have in store for me? Would I ever be able to breathe properly again, or would I be breathless forever? Would I always be covered in bruises? I wasn’t sure living was right for me. Not only was I severely short of breath, I was so fatigued and I was still hauling the surgical leg around. Everything I had to do , I needed help!! This was definitely not like the old me ! My resulting mood was downright miserable and cranky. I disliked myself. Everyone was so NOT understanding….(I felt). They seemed to think I was okay now and should be back to normal…..HA !
Then I found the Surviving A Silent Killer (DVTs & PEs)Facebook Group at:
There, I found Lisa Wells and many others who had experienced just what I had or similar ailments! At first I was skeptical, it is my nature, but having found others who understood my concerns and answered my questions as best as they were able, saved me from deep despair. The Survivors Group made such a positive difference in my outlook on life. I wanted to stick around, I wanted to improve. I wanted to help myself in any way I could. Any question would be addressed tenfold at the click on the keyboard.
Fast forward to the Present: I was a very Lucky Lady from the start. All the medical doctors felt the DVT & Bilateral PEs were provoked by the surgical cast and the ensuing immobility. Due to their agreement, I was allowed to discontinue the blood thinners after one full year of taking them. I was watched very closely and thus far – three years later – am ok.
When I travel, I wear compression stockings. I also at times need to thin my blood for air travel and long driving trips. I get up and walk around, I do leg exercises. I do not cross my legs.
I need to have Greenfeld filters placed prior to surgeries (I have since come through Uterine and Thyroid Cancer surgeries successfully.) Then, after the surgeries, the filters must be removed.
I will forever be alert to signs of another DVT….and I do have occasional leg cramps that scare me. I look at my limbs for any suspicious swelling. I worry when I catch a chest cold or have an asthma attack…I am on a mission to never ignore symptoms again.
The year 2013 changed my life forever. I can say that now I feel good. It took a really long time to get to this point. I am glad I stayed the course and have learned my limitations. One day busy, the next day restful. Not wanting to reduce my husband’s role, whom I cannot say he understood what was happening to me, he did stand by me (and my moods) and helped me to regain myself once again.
I was tickled when Lisa asked me to share my story. My first thought was, “What can I offer?”
A day later, I know that if my experiences touch just one other person who needs to know there is life after DVTs & PEs, then it is worth sharing.