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Linda Libby
In 1989 my 26 yr. old sister, Sheila, had a job, a husband, one son, one baby on the way and everything seemed to be going good for her. On Sept.
11, 1989 she went to the hospital to have a C-section. She had a spinal and her healthy new baby boy was delivered. On day 2 of her Hospital stay
she complained of a severe headache. The staff told her she was probably having one of her Migraines or a spinal headache. She tried to tell them
this was VERY different! She pleaded for pain relief and it seemed to get a little better. She was sent home on day 3. On day 6 she awoke with severe
head pain and on the right side of her head, could hear "whishing sounds" above her right ear. She went back to the small town
hospital and they couldn't find any clot with a CT scan. The family demanded that she be sent to another hospital and get an MRI.
Finally she was sent to another Hospital and an MRI found what they were looking for, a clot. She had a stroke and was left with seizures.
The part that baffled ALL the doctors who attended her, why wasn't she responding to the blood thinners the way they thought she should? She would respond
to Heparin but when she was put on warfarin sodium for any length of time her blood would thicken again and cause more pain. They couldn't find any coagulation
disorders "KNOWN to them".
She was sent home several times, only to return with more clotting and more damage to her brain. We went through months of different Hospital stays and
nearly lost her several times. Specialists that were consulted, didn't know what to do and said we had to endure a wait and see attitude. Her Insurance
kept sending her home. She finally got some control and went home and after about a year was doing fairly well. Her seizures were short and mostly tingling
sensations that would warn her to sit or lay down quickly to avoid falling. She did ok for about 4 or 5 years and then she started to have real problems
with as many as 52 seizures in a 24 hr. span.
Her meds were changed many times and brain surgery was attemped to find the areas of damage. They couldn't do any repairing as the damage found, was too
close to motor skills to even try without possibly leaving her partially paralyzed.
It wasn't until 1998 when one of her specialist had attended a conference and the case was then discussed. They decided that FACTOR V LEIDEN tests should
be performed to find out if this was the culprit?
My sister was confirmed of FVL and then she was told that our family should be checked. One sister after the other, got tested and 5 out of 6 sisters were
positive for the mutated gene. The youngest does not have it. My mother and father were convinced to get tested and we found that my father is the one
that has the affected gene. My mom didn't have it. We all thought SURE it was going to be our mother that carried the gene. Her mother had TIA's and blood
clots in her legs in later years and took blood thinners since about 50 yrs old.
Since none of us knew that much about the issues that could arise, we haven't done much to change anything except, sometimes remember to tell all our doctors
of what we know and what happened to our sister Sheila.
It wasn't until today that I realized that not many people or doctors know about this FVL. I went to do pre-op testing yesterday and when I mentioned it
to the nurse, she admitted she never heard of this before. I gave them the spelling and several of them looked it up and one anestheologist had a Medical
PDA that told them briefly what it was. They showed real concern after they read the information and asked if I had spoken to my GYN about this? He has
been informed since I found out that I had the gene, May of 1998. PROTEIN C RESISTANCE was mentioned on my Report but have not had follow up tests done
or seen a specialist. I reminded him of it with my recent annual GYN appt. Being as I am 52 and a lot of medical things have hit me in the past year or
so, I felt I needed to remind people who don't see me often.
During Pre-op testing you see 3 staff who ask questions and sometimes the "RIGHT" questions are not asked and so it is not thought of.
The 3rd. person I saw asked detailed questions and asked it 2 different ways and that is when I thought to tell them of my FVL.
My recent annual GYN, resulted in having an utrasound to further check what I thought was possibly a normal perimenapausal symptom. The ultrasound prompted
that I have a D and C to find out what the changes to my Uterus are all about and the spotting I am having. They think there are polyps and possibly some
cysts.
There is so much more history I could tell you that I know so far but just wanted to say, "THANK YOU" very much for your site and the info has
now prompted me to do more follow up medically, to do testing and to inform my family of all the other blood disorders that we should be testing for as
well. Since we only tested for FLV and Proteins C and S. My grandmother may have had another type we are not aware of and she is no longer with us. My
mom may have another type of gene issue.