About This Dude

My name is Jay and I am about to celebrate my 39^th birthday.  I was diagnosed with Secondary Lymphedema when I was 29.  For almost eight years prior to my diagnoses, I had been suffering from swelling legs and no medical professional was able to tell me why.  I was treated for everything from Urinary Tract Infection, Kidney Infection, and screened for STD’s.  

In March of 2007 I started having issues where I would pass out and stop breathing.  I was rushed to the hospital and admitted for having multiple PE or Pulmonary Embolisms.  After about a month of being in the hospital, I found out my PE’s were caused by a DVT (Deep Vein Thrombosis.)   My DVT was caused by Factor V Leiden thrombophilia a genetic disorder of blood clotting.  Factor V Leiden is a variant (mutated form) of human factor V (one of several substances that helps blood clot) that causes an increase in blood clotting (hypercoagulability). With this mutation, the protein secreted that helps blood not clot is unable to do so, and therefore clotting is more likely.  Lucky me.  After I was released from the hospital I had to see a Vascular doctor and Hematologist.  Between the two of them I got my Secondary Lymphedema diagnoses, based on damage to my lymph system from the DVT’s.  

So, in the span of two months, I almost died, found out I have a gene mutation, will be on Warfarin (blood thinning medication) the rest of my life, and have Lymphedema.   Did I mention this was all about four months before my 30^th birthday?  Happy freaking Birthday to me. 

One night, while not sleeping, at the time because I was sure I was going to die, I started searching the web about Lymphedema.  In 2007 I didn’t find much and what I did was geared towards women.  I’m like WTF.  Here I am a guy, I have this disease and almost all the information I am finding says this mostly only effects women.  Again, WTF? 

Here in 2016 there isn’t a lot out there about Lymphedema and men.  Maybe it’s because we don’t like to talk about our health problems.  I talk the hell out of this one.  All the struggles with my insurance, my job, dating, sex, clothing, and the like of that…other guys need to hear about it.  I know I am not the only one out there trying to figure this crap out.  Almost ten years later and  I still don’t have it totally figured out.