- Waldenstrom Macroglobulinemia
- Interviews
Greg Martin's interview
How did all start?
It started when I had an allergic reaction to Benicar for High blood pressure. That is when they found my liver enzymes were extremely high for no reason.
Do you already have a diagnosis? How long did it take you to get it?
From the initial diagnosis of IGM MGUS, to Waldenstrom's took almost 4 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
Oncologist, Neurosurgeon, Family Physician, WM Specialist
What has been the most useful thing for you so far?
Becoming a member of the International Group of Waldenstroms Macroglobuliemia Group. They are probably more up to date on the newest treatment options and what is on the horizon, than most physicians. I am always updating my oncologist on things to look out for or try.
What have been your biggest difficulties?
Adjusting to the new normal. I have only so much energy to use per day. If I use to much for a day, I pay for it in worse fatigue for the next couple of days.
How has your social and family environment reacted? Have your social or family relationships changed?
We have grown closer together thru out this walk.
What things have you stopped doing?
Staying up late, bedtime is regulated tightly. Learning to say No, I can;t do that.
What do you think about the future?
I think it looks bright with so many new options coming on the horizon for treatment.
What would you like to do if you didn’t have your condition?
Do some physical things that I can't right now, such as take my antique motorcycle on a touring trip around the Great Lakes.
If you had to describe your life in a sentence, what would it be?
It is what I call the New Normal for me.
Finally, what advice would you give to a person in a similar situation?
Keep looking up! Even on the worse days, there are others that I wouldn't trade my life for. There are many new treatments coming on the horizon, just walk thru it one day at a time. If you don't it can be overwhelming. Also learn as much as you can about the disease. Some patients are so focused on their blood numbers, but the numbers mean little if they are not affecting you quality of life. The doctors in the know, will treat low number WM's if they had symptoms that are hurting your quality of life. If your doctor says no, then find one more educated. We are a very small group that have WM, only 3-4 in a million per year, so it may take some work finding a good doctor that will listen.
