Klippel Trenaunay and May Thurner

Every case of KT is extremely different. Some people have larger limbs, some people have smaller limbs. Some have extreme pain, and some have hardly any at all. Ulcers are common, so are blood clots.

My case is not nearly as severe as some of those I’ve seen in my support group.

I suffer in my left leg. I was diagnosed a little over a year ago. They found I had May Thurner as well, which they had to operate immediately on.

My case of May Thurner meant that my left Iliac Artery was so large, it was crushing my left Iliac vein. The Iliac Artery controls all of the blood that goes into your leg, and the Iliac Vein controls all the blood that exits the leg. Since my Artery was so large, and was crushing the vein, blood was going into my leg but not out of my leg. It pooled in my leg, causing massive swelling, pain, & blood reflux. First surgery was to remedy this. They installed a metal stent into my left Iliac Vein to keep it open so the blood would exit the leg. During surgery, I was able to opt out of sedation and watch which was really great for me because I directly saw everything they were doing. They didn’t have a stent strong or large enough mid-procedure, so had to go to the hospital next door during surgery to get one. This made me laugh! The stent was installed and I saw the INSIDE of my upper leg. The installation had a camera on it, it was very neat!

After this surgery we had hopes it would help my Klippel Trenaunay, but unfortunately for me it did not. While this surgery was absolutely necessary, now my lower surface leg veins were extremely large. The blood was going into the vein, but not out. The blood was going backwards. This is called refluxing. Refluxing felt like [to me] extreme burning sensations accompanied by cramps in my leg. They also found that my veins were creating veins, so blood was going NO WHERE.

The next step was removing the large veins. They removed some of my surface veins, in hopes that would help. Unfortunately again, this did not. Next surgery they had to go to my lower veins and remove a few of those. With a disease this rare and unique to each case, it’s really impossible to know what will work. I’m so lucky that my Doctor is just absolutely amazing. She explains everything to me in extreme detail, and is so positive that everything they’ve done will indeed help me in the long run.

Now I’m in a place where I don’t want any more surgeries, but may end up needing them regardless. I have to say it’s very frustrating. But again, my “therapy” is swimming and biking. Who can really say that?! These two things take my pain completely away. That is better than any medicine anyone can prescribe, and my Doctor loves that I’m doing these things to help.

I’m so thankful I found the amazing KT support groups I’ve found through social media where everyone shares their stories. I started to think, we should really start sharing these things with everyone, and not just each other.

I go back next week, and will update what the next steps will be!





Awareness & Self Awareness

My whole life I’ve thought I was meant for something. I always struggled with feeling like I was meant to do something big, but never knew or understood what that was. I went through my life wondering if I was taking the right path, because I always wanted the path to take me to my victory. Little did I know my path would find me, and my purpose would be sharing my story with others in hopes of spreading awareness.

A little backstory on myself: I was born with birthmarks and no pigment on 50% of my body. I have Port Wine Stains, which are purple marks on my skin [but I’ll get more into those later]. They are on my head, face, neck, chest, back, and left leg. Opposite my birthmarks I have no pigment, which is just white and unable to tan. I went through a lot of stages with my birthmarks and only have learned to accept them in the last ten years, I am now 30. The areas I have no pigment are hardly noticeable, since I have a very light skin tone.

    Last year I was diagnosed with Klippel Trenaunay Syndrome with May Thurner Syndrome, which was a very hard thing for me to accept. These diseases are not caused by birthmarks, but often accompany them. I had 2 rare diseases, one being a chronic rare disease that no one had even heard of. No information and certainly no cure. I dealt with aches in my left leg my whole life, and I just walked it off. I was taught never to feel sorry for myself, and to walk through my pain. Now I was being told to listen to my pain, so my leg would be healthy.

   So here I am, 29 years old at the time, realizing that my whole life I was so focused on the physical attributes of my birthmarks that I completely ignored the actual physical harm they could cause. Life has a way of putting things into perspective through harsh realities. I will get more into the diseases birthmarks often come with in another blog, but wanted to touch on them this blog so everyone would understand my purpose. I see so many people succumb to these diseases and let them control their lives. My disease will never control my life. I’ve had to make many lifestyle changes to avoid being in constant pain, but these lifestyle changes are good for me.

    My purpose has changed. I share not only so people understand what people with this disease are going through, but I want to get rid of the stigma that being and looking different is unacceptable. There is no excuse for bullying. Ignorance is not an excuse when we all have so much access to information now. I hope to inspire others with rare diseases to find their own ways to cope and to be comfortable enough to share their stories as well.

  I’m on a weight-loss journey, while going to school, working more than full time, and keeping my social life alive. It’s tiring, but very fulfilling. Through this disease I’ve found my new favorite hobbies: biking and swimming. Coincidentally, these are extremely good for my bad leg. I hope that in a year I will look back at this blog and see I’ve positively impacted other people, and have hit my weight-loss goal as well.