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 then I was “just one of those women who bleed”.
My periods lasted 10 days and even on the pill they lasted 7 days. I was probably anaemic all that time. Thankfully I didn’t need surgery till I started having children. I had 2 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 it 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 the 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 60’s I lost huge clots and blood for days but didn’t think to go to the drs. Just 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 bad periods and my son lots of bad nose bleeds.
I saw an hematologist and he sent me for tests for hemophilia which cam 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 GT so knew what it was about. He had a dr. friend half an hour away from me and he became my hematologist.
I had to have teeth removed and they put me onto Tranexamic acid and then platelettes before the operation, during and after the op. My son takes great delight in telling everyone his mother is on acid. Terrible child.
These drs. Have all retired now but my new dr. is Indian and his first patient in India when 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, bad periods and the boys have dreadful nose bleeds all the time. They refuse to be tested as they don’t want to have 18 vials taken from them. Big sooks.
5 years 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 acid 6 a day for a week before and platelettes 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 platelettes and 5 of blood before the bleeding stopped.
Now they give me platelettes every day for a week before, tablets 6 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 2 lots of surgery and the first time blood had to be sent from Perth which is on the opposite side of Australia. This meant taxi to airport, 7 hour flight, another 2 hour flight and taxi from airport to hospital. My blood group is A positive which is not a rare one but matching it seems to be a problem
I am extremely lucky to be living in Australia because I don’t pay for any of this. There are only about 6 families that we know of here but when I had genetic testing because we couldn’t find a second parent anywhere with it if 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 the more common one but it isn’t. They were doing research on it in England but my geneticist cannot find the results of the testing anywhere.
I hope this is of interest to someone.