I am Judy Perrier. I’m 76 years young, Type 1 Mild, world traveller and I reside in Thunder Bay, an isolated community in North Western Ontario.
I was diagnosed in my mid 30’s after two C-Sections and a hysterectomy. I have been retired for 22 years and I consider myself living the life with VWD. I have a lot of experience in dealing with this disorder, as my Mother also had the same type. I looked after her with her bleeds for decades, when Emergency visits became a way of life.
I am very fortunate in that my serious nose bleeds did not start until after my 70th Birthday. I have had six years in dealing with various aspects of VWD. Spontaneous nosebleeds became a way of life for me. At first, it was scary, but with time and educating medical staff, my situation improved. My Factor First Identification Card was laughed at when I presented it the first time in the Emergnecy Room, but after numerous visits, it was recognized. With additional hospital visits the staff got to know me. One visit is very memorable for me as my attending physician said, “I will do what you tell me to do, as you know more than I do about VWD!”.
My worst bleed occurred in November of 2016. I was bleeding from both nostrils, my left ear and eye. I was actually admitted and I was surrounded by a lot of nervous health care people. I was given Tranexemic acid pills and DDAVP injections which finally worked.
Timing is of the essence in treatment. Unfortunately, it would be hours before my DDAVP injection arrived because of the working of our Emergency Department in the North. I knew that this was unacceptable, that I had to take matters into my own hands and get a prescription for DDAVP injections so that I could look after myself in my home, rather than going to the Emergency Room. Before that happened, however, two more scenarios occurred.
On February 21st 2017, I was in Victoria, British Columbia. I had a bad bleed so I went to an Emergency Room. I was taken care of immediately and given DDAVP within minutes. The physician treating me knew all about DDAVP. Again, on May 17th 2017, I was in Old Quebec City and my nose started to bleed during the night. I went to a very old hospital around the corner from my hotel. The doctors there had never seen a VWD patient. That was very interesting for me. With time they gave me an injection of DDAVP and released me with a few injections to go, just in case, as I was flying home the next morning. That changed everything for me.
I started the journey which has made all the difference for me with my nose bleeds. I did a lot of research and called the Hemophilia Treatmtent Centre at St. Michaels Hospital in Toronto. It was obvious to me that I needed to see Dr. Jerome Teitel or Dr. Michelle Schlozberg, the two leading hematologists in Toronto. I told the receptionist my story, briefly, and she informed me that my next step was to get a referral from my family doctor to start the process and that I would see one of these doctors.
While I was in research mode, I also looked up ENT specialists at St. Michaels, as my ENT specialist in Thunder Bay wanted to do surgery through the roof of my mouth to repair the bleeding site. The receptionist there recommended Dr. Jean Davidson who had just transferred from Sunnybrook Hospital.
Once I received my referrals, I waited to hear from St. Michaels. Appointments were booked on two separate days which meant two flights to Toronto. Even though I had to pay for these flights, I was determined to follow through with my plan. I sent both departments a one page summary of my bleeding history.
On September 13th 2017, I flew on Porter airlines to the Toronto Island. I saw Dr. Jean Davidson, along with a resident at St. Michaels. For the very first time, a tiny camera was inserted into my nostrils to check out my nasal passages and the site of my nosebleeds, which is located deep in my nasal passage, on my left side. I could see what the doctors saw on a monitor.
The specialist told me that the bleed site was very well healed. I told her about the invasive surgery that I was scheduled to have in Thunder Bay. Her immediate response was “No”; just leave everything alone. She also said that cauterization was not a good idea either. That was also the opinion of my specialist in Thunder Bay, as cauterization is a temporary fix which often leaves a larger bleeding site.
On October 3rd 2017, I flew on Porter airlines again to Toronto. I saw Dr. Jerome Teitel and two other assistants. This was the best appointment I have had regarding my VWD. My appointment was 45 minutes in length. I chose St. Michaels, as I knew that all the blood tests that we had in Thunder Bay were sent to this Hemophilia Treatment Centre for analysis. At the conclusion of this appointment, Dr. Teitel asked me what he could do for me. I replied, “I want to take care of myself when I am at home and when I travel. I do not want to go to an Emergency Department. I want product!”. When I walked out of his office, I had a prescription for DDAVP, finally. My journey was complete.
Both of my appointments at St. Michaels were very successful. I had a very specific goal when I started out and I did not stop until I received what I needed. The vials of DDAVP are in my refrigerator. I learned how to snap open the glass vial, use one large needle to draw up the medication, exchange the needles and to inject myself. The relief that I have experienced is beyond words.
Last year, I had two bad bleeds, and I used my own medication to take care of myself. No stressful Emergency Room visit was necessary. I am also able to travel with the knowledge that my injection medication is in my purse and, once again, I can take care of myself.
DDAVP is my lifesaver when I have a severe nosebleed. Years ago, I would have to go an Emergency Department to receive an injection which was always very stressful. Now that I have a prescription for DDAVP vials, I look after myself. If you use this medication, you know that it requires refrigeration. That has been a problem for me, as I travel extensively. But, not anymore. Through my own research I found a fabulous product called FRIO cooling products produced in the UK. They are called wallets and come in various sizes and colours. They were developed to keep insulin cold. Prior to COVID19, I travelled to Australia, New Zealand, Italy and Greece. My FRIO product kept my medication cold, without issue, as it lasts for a few days. Overseas travel is no longer a concern!
All in all…
- Be your own advocate or for a member of your family.
- Do not let any health care worker intimidate you. Educate them about VWD. Ask if they would like to know about this disease and when they agree, start talking.
- Continue to research and to learn.
- Join Hemophilia Ontario
- Wear a MedicAlert bracelet and carry your Factor First Identification Card.
- Join bleeding information and support sites online. You will always find the best information from other bleeders.
- Attend seminars and webinars.
- Discover what medications work for you and get prescriptions.
Do not let your bleeding issues run your life. You have the ability to be in charge and to take care of yourself.
Good luck and good health as you motor on, living well with VWD.