MY GT JOURNEY.
I am now 74 years old and living in Australia. This meant I had a long time, 64 years actually, till I was diagnosed with GT. Until the,n I was “just one of those women who bleed”.
My periods lasted 10 days, y,s, and even on the pi, ll, they lasted 7 days. I was probaanemicemic all that time. Thankfully, I didn’t need surgery till I started having children. I had two miscarriages with unknown causes—one at 3 ½ months and the other at 4 ½ months. With the first miscarriage, I hemorrhaged and went into shock, but nothing was thought of at the time. I was 23 years old. These would have been my second and third children.
When speaking to my 92-year-old grandmother one day and complaining of bleeding problems, she told me my grandfather was a hemophiliac. He died in 1972, long before he could be diagnosed with GT. No one else in his family was told about it, so we have no idea where it came from before him.
When I went through menopause in my 60s’, I lost huge clots and blood for days but didn’t think to go to the doctors.I justt stayed in bed. Silly thing to do
When my husband died in 2004, I decided that I had to be tested in case I had something which would be passed onto my children and grandchildren. The girls had terrible periods, and my son had lots of lousy nose bleeds.
I saw a hematologist, and he sent me for tests for hemophilia, which came back negative, but someone in the lab suggested I be tested for GT. It was positive, and I then had to travel to Sydney 3 hours away for a second test. It took 18 vials of blood each time. The Sydney hematologist already had one family with G, T, so they knew what it was about. He had a doctor. A friend half an hour away from me became my hematologist.
I had to have teeth removed, and they put me on Tranexamic acid and then platelets before the operation, during, and after the op. My son takes great delight in telling everyone his mother is on acid—terrible child.
These dDrs I have retired now, but my new doctor. He is Indian, and his first patient in India when he graduated had GT, so he knew all about it. My late mother and youngest daughter have been tested and are negative but have a lot of symptoms, such as bruising and bad periods, and the boys have dreadful nose bleeds all the time. They refuse to be tested because they don’t want 18 vials taken from them—big sooks.
5Fiveyears ago, I started bleeding vaginally, and I rushed straight to the hospital, where they diagnosed endometrial cancer. Within 3 weeks, I was in for a hysterectomy. GT probably saved my life. I commenced the ritual of tranexamic six a day for a week before and platelets during, but this time, they couldn’t stop the bleeding. I was brought out of the anesthetic to wait till the right blood could be taxied up from Sydney at 3 a.m… I finally had 11 units of platelets and 5 of blood before the bleeding stopped.
Now they give me platelets every day for a week before, tablets six a day for a week before, and both these kept up for the op and 7 days after. My latest bout with breast cancer meant I had two lots of surgery, and the first time, blood had to be sent from Perth, which is on the opposite side of Australia. This meant a taxi to the airport, a 7-hour flight, another 2-hour flight, and a taxi from the airport to the hospital. My blood group is A positive, which is not rare, but matching it seems to be a problem.m
Unfortunately, I live in Australia and don’t pay for this. There are only about six families that we know of here, but when I had genetic testing because we couldn’t find a second parent anywhere with it, it was found that I have a rarer form of GT, which is on Gene 16 and only requires one parent. You would think this would be more common, but it isn’t. They were researching it in England, but my geneticist could not find the testing results anywhere.
I hope this is of interest to someone.
