Dale Paynter is our special guest today. He has been very instrumental in getting the word out about ITP.
Dale started an ITP Support Group for the Toronto area in Canada and has done a number of interviews with the local media. He has also participated in the PDSA conferences here in the USA.
Hats off to this wonderful man and all the great work he has done for all ITPers.
I guess it is my chance to add my mild little story to Greta’s wonderful blog – should be doing something while we are sitting here at the Hospital getting IVIg. Those who know me agree I can ramble on, so you might need to grab a drink and/or a snack to get through this….sorry.
My low platelet condition was discovered in the spring 2010 in an annual company medical (70 at the time). My numbers continued to drop into the 30s and I was referred to a hematologist that same fall. We tried Dexamethasone to see if that would raise my numbers to no avail. She then conducted bone marrow tests and specifically found I have a protein clone that is attacking my platelets. It is a bit unsettling when the first time you hear of a rare condition, you are told you have it. A great deal of time was spent scouring the internet to find absolutely everything about ITP.
Before my referral, I did a lot of thinking about a specific cause of my numbers. Looking back at old medical records showed 400 in 2007 and 150 in 2009. I had a bruising from a hockey injury about the same time as my 2010 medical – was this a cause or a symptom? I had a large weight loss three years ago; did this trigger something? I was a chronic worrier - is ITP stress induced? I have done a lot of youth volunteering with some tasks requiring long, late hours at certain times of year – did I burn myself out? I may never know if it is one thing or a combination of things; many of us never will.
My numbers were somewhat stable in the 30 range without treatment, but I was concerned about an upcoming winter golf vacation in South Carolina with my 20 year old son. To be in another country (even the United States) with a different medical system was a concern should something happen. My hematologist suggested that we try IVIg to see how that would work, even short term. This was covered here in Canada, so we gave it a try. Four days put me back over 350 – did we the find the silver bullet first time? As we all know, IVIg is only temporary, but still we had something that worked if we needed. That took so much off of my mind.
My haematologist has suggested that I would be a good candidate for a splenectomy, but that talk has been less recently. I visited a friend who is a local naturopath about a year ago - we found a number of food allergies and also diagnosed Candida. We successfully conducted several treatments to eliminate these, but this did not improve my platelet levels.
Over the past 20 months, I have had CBCs every two to three weeks, and IVIg for two mornings every four to six weeks when my numbers have been below 30 (lowest test ever 15). I have zero side effects from the treatments, and get really strange looks from all of the nurses when I say I am heading back to work. Sometimes I wonder about trying some of the other treatments, but many are not available, approved or covered here in Canada. We will be working on changing those kind of things up over time.
There are some things that we can obviously no longer do (play hockey) and we need to pay attention to tasks at work and home, but we are still active. I am volunteering with kids hockey (managing…off the ice), biking in the summer and curling in the winter (it is Canada). I own golf clubs, but they aren’t very good.
Back when I was first diagnosed two years ago, my hematologist gave me a small brochure that has ultimately changed everything and given me direction now that my sons are grown and off to university. Many of you know of my deepening interest and involvement with the Platelet Disorder Support Association in the US. Without being on a soapbox here, I can’t say enough about how PDSA and the people there have helped many of us with ITP. My first conference in Boston in 2011 was magic. It was just so great to for the first time meet and talk with people live who have the same condition.
I now facilitate one of two PDSA support groups in Canada, drawing attendees from all over the Greater Toronto Area. I have completed television, video and newspaper interviews in Canada and the US, as well as had the opportunity to speak at the 2012 Conference in Denver. My sights are set on establishing a ‘new’ regional fundraising event, and getting charitable donation status here in Canada.
Social networking has been a godsend in learning how many others really have this, and how other people have been treated and how they have responded, favourably or unfavourably. I can’t imagine how difficult it would have been to be alone with this. I can’t say thank you enough to my worldwide ITP family.
Once again this is not about me. I have been able to manage all of this; I am fortunate that I have few (if any) of the other physical symptoms or medication requirements of a great number of the people I have met worldwide who have ITP. It is SO important to get our word out, so our numbers know they are anything but alone.
My wife and I consider it lucky to have found this when we did and that I am being looked after before it could have been much worse or even too late. It has corrected some priorities.
See you in Washington in July.