About Pete

This is a work in progress and will be added to as we are further enlightened. OM!

Pete has Klippel-Trenaunay Syndrome. Well, maybe. Probably. Possibly. If we could find any doctors who actually know anything about it. The doctor who did diagnose him has since done what any sane individual living in Oklahoma would do and has left the state. 
Pete's two regular vascular doctors argue about what the hell he has. One doesn't really have a clue and the other doesn't really care unless there's an intern he can show Pete off to. Oh, do I sound bitter? I wish I could say I was sorry but, as many of you in the same position know, it can get frightfully frustrating dealing with those who are supposed to be the experts at this game. Here are the basics for those keeping score:

He was diagnosed at the age of 36, although he'd been having symptoms since he was 19. Growing up he was told he had a Port Wine Stain (PWS) on half of his body. That was it.

Yes, Pete's outer vascular component, the vascular malformation, covers his right arm, right leg, and then the entire right side of his trunk. He has a tiny (about lime-sized) patch of PWS on his left shoulder. He also has faded birthmark on his neck and between his eyes.  Along with this he has varicose veins. Mainly on his right foot and leg. Chronic Venous Insufficiency is part of all the fun and we've had our share of venous ruptures too.

He has hemihypertrophy of his right arm and right leg. He may have some sort of hypertrophy going on with his rib cage. We're not sure, of course, ha ha ha (I've always wanted to write something about a "mirthless" laugh, thanks for helping one of my dreams come true). His right leg is about 6cm (2") longer than his left. He wears a lift on his left shoe to make up the difference. 

Pete has lymphedema on his entire right side. Wait, not his head. Thankfully. Although he's had the odd swelling, it doesn't appear to be that affected. However, his right arm, right leg, right chest and around to his back and yes, his right buttock are all blessed with The Mighty Swell. There is some concern that his left side is also compromised but we are awaiting the final call on that. 

To be honest, I don't really know what the "experts" mean when they say "soft tissue overgrowth". Most doctors I talk to say it means "lymphedema". Some say it's hemangiomas or simply thickening of the skin. Others kind of stare off into space and I'm afraid to disturb them. I know what it's supposed to mean but in terms of what we're dealing with? Not really. 

He has a spinal arterio-venous malformation from (Thoracic Vertebra) T4-T8. This isn't fun. No bleed yet, but it is becoming more symptomatic. Currently the doctors say it's very unlikely to bleed before it grows enough to compress his spinal cord as it is doing now. We like to say he's between the sword and the wall... 

Cervical kyphosis and levo-thoracic-scoliosis which basically means his head sometimes looks like one of those T-squares I used in middle school technical drawing (my word how I did hate that class). And when he stands straight ~ granted with everything else that's kinda difficult ~ you can actually see him curve to the side. 

Degenerative Joint Disease (DJD) (which is trying to avoid being called by its less cool-sounding name is known as "osteo-arthritis) from the hemi-hypertrophy/leg length discrepancy (LLD). Tempromandibular Joint disorder (TMJ) in his right side.  He also has some stenosis in his C-spine.

As a bonus, Pete got the gift of a vasoconstrictor disease/condition. It's kinda like Raynaud's...but, errr, not. Remember the "PWS" on his right side? When he gets cold, either in the winter or if he's simply chilly no matter the season, his fingers and toes turn all purple-y and have a hard time warming up if he's out in the cold. Year-round he deals with his hand and foot cramping and seizing up from the poor blood flow and constriction. 

Other health issues he's dealing with that may or may not be related to the KT:

Anemia
Low B 12 levels
Low iron (although not apparently from internal bleeding)
Low D levels
Hypothyroidism
Tinnitus and hearing problems in his right ear
Extreme fatigue, provisionally diagnosed as Primary Hypersomnia

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