Jan

In April 2003, I went to my family physician (who in 10 years I had only seen once as he was always booked so each time I had to see a Physicians Assistant). Of course this time I had to settle for the Physician’s Assistant also. I had swelling in my upper right thigh with redness and pain. He tested me for Lyme disease as I had told him I had taken a trip the month before to a Botanical Garden which was about 3 hours away. Although the test came back negative, he insisted it was Lyme disease and told me to retest in a few months.

On September 16th I couldn’t stand the pain anymore. I could barely walk. When I called to make an appointment they told me it would be at least a week before I could be seen by a Physician’s Assistant. I told them to forget it and questioned my co-workers about their Doctor. I was told about a wonderful Doctor and made an appointment to be seen the following day. She took one look at my leg and told me I had Phlebitis and put me on medicine.

The following Monday morning (2 weeks after my 50th birthday), I woke up thinking my vision was blurry and "just not right" but couldn’t put my finger on it. I thought I had slept on my bracelet wrong and I was in a big hurry to get to work as I was on a major programming project (which I loved). On the way to work I couldn’t stand looking out the windows as my husband drove.

Once I got to work, I couldn’t seem to plug in my laptop so I went to fill up the coffee pot for the unit. I must have appeared confused as one of my co-workers came over to me and asked me if I was alright. When I looked up at him, I couldn’t see his face!! I called my husband and told him I needed to go to the ER NOW. The ER tested me and told me they think I had had a stroke, but because I didn’t know the exact time, they couldn’t do anything.

The next week, I went for testing and sure enough, I did have a Occipital Stroke which made me lose my center vision. (Now, I can no longer read more than 3 letters at a time, so the job of my life was now over.) Upon more testing, they found I had a blood clot is my right thigh, right arm, and right lung.

I was walked from the outpatient testing to the ER where they admitted me and put me on Heparin and Coumadin. They also started me on Lovinox to get me started, which caused a massive hematoma in my abdomen.

My new Doctor called in a Hematologist who tested me for Factor V Leiden. I turned up positive. He also told me that the hematoma from the Lovinox contained about a pint and a half of blood. They could never seem to regulate the Coumidin, and in March 2005, my INR was 5.5. I was hospitalized with a gastric bleed. They gave me Vitamin K in the ER on Saturday, but never started testing until Monday.

I was in Intensive Care for 4 days, and received 6 transfusions, 3 platelets, and 2 plasma. By the time they tested, they couldn’t tell where the bleeding came from. During the year of 2005, I was hospitalized 5 times. Between the nausea from the vision and the loss of blood, I got totally malnourished. Between March and November I lost almost 80 pounds and almost all of my hair including eyebrows and eyelashes. Finally, I asked if I was dying. I couldn’t lift my leg up 2 inches, or walk from one room to the next on my own. They put me on TPN, which totally changed everything. I slowly regained some weight and my blood is slowly coming back.

Not knowing that anyone in my family had this affliction, I never realized how many symptoms I actually had over the years. I had 2 miscarriages, 1 tubal pregnancy that ruptured, cystitis in my arm (which they almost amputated), migraines, constant regular headaches (which I used to take aspirin for, so probably saved me from a stroke earlier.) Last May, I developed seizures, which a Neurologist said is from scar tissue from the stroke. I am now also on anti-seizure medicine. They still can’t seem to regulate my coumadin. Two weeks ago the lab lost my blood work, so I had to have my INR retaken. I was called from the Doctor’s office as my INR was 10.2 and told to go to the ER immediately. Although I am very lucky to be alive, I have a lot of difficulty with my vision. I can’t tolerate a lot of movement around me and things (people) go in and out of my field of vision too fast. My eyes are also very sensitive to light, and worst of all I can only see about half of a person’s face.

Although I have adjusted to not being able to read, drive, or be in crowds , it is even more difficult to know how hard it is on my family. If anyone has any symptoms from this horrible affliction, please get it checked out. There really are some caring Doctors out there, mine saved my life.

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