How would you describe yourself? A VM Patient
Where are you located? Iowa, USA
What types of vascular malformation do you have? PIK3CA Klippel Trenaunay
Which part of your body is affected by vascular malformation? Torso/chest, groin, up left flank, around chest, around kidney
What has your VM journey been like so far? How has your VM journey evolved over time? Had my first surgery when I was a few weeks, lymphatic tissue in my kidneys was removed. Had a 95% resection from my left side at 5 years old. I don't remember much of that experience except for a long stay in the hospital. Didn't see anything else for issues till about mid teen years when I went through puberty and at about the age of 19 I had some blood in my urine. At 20, the hospital in Iowa City attempted an embolization. (I should have gotten a second opinion from mayo clinic). They hit a nerve with the alcohol and my legs have been the same since. Started seeing mayo clinic few years later, I won't trust another place again. Plus Rochester, MN is a beautiful place. I've had numerous sclerotherapies done, I've had extraction of muscle and tissues. I go back in September to plan my next steps. I just found out that all this pressure in my body has made my lumbar spine stenosis (harden) for the 3rd time and the malformation is connected to my nerves at level t10-12. I see a chiropractor weekly, drink lots of water and pay attention to what I eat. A healthy diet, water and 2 aleve every morning help me get through my day.
How do you/did you cope during hard times with your VM? Currently, I’m 36, I have 2 kids and a wife. My wife is my rock and I lean on her for that emotional support when everything seems dark or grim. Before that I’m not sure I ever understood the severity since all the medical advancements weren't top notch at that point. I was just being a kid. I have always had faith and hope to the lord for his plan going forth.
If you could share a piece of advice for others with a similar condition, what would you tell them? There's a reason we are here, there is a positive mind set behind every inconvenience of life/pain. Focusing on the positive and being grateful for what you have every day will help you stay in the light.
What is something you learned about yourself throughout your journey? I’m a lot stronger willed than I ever intended to be.
What do you wish people understood about you better? I’m not a jerk, I’m just in constant pain. I tend to be dismissive.