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View Full Version : newbie :) + a varicose vein questions



kat0013
04-12-2013, 11:45 AM
Hi everyone, my name is Kat and I'm 24 years old. I was first unofficially diagnosed with lupus (unofficially because I still haven't had a biopsy, but my blood tests came back positive) when I was 22.
At first, I had a really hard time with it. Mostly because it took 6 months of me being ill to figure out what was going on. I had pleurisy, myositis, achy joints, stiffness, and allover pains for 6 months after a car accident. When one ache went away, another started. My primary doctor shrugged it off. My legs and feet started swelling and were puffy and so painful, but my doctor said it was probably due to the 90 degree weather we were having. (Just thinking about that irks me.)
After 4 months of walking around with these painfully puffy legs, I was sent to a hematologist because my platelet counts were very low. He knew right away there was something going on. He sent me to see a nephrologist because I was spilling 11 grams of protein in my urine and continued to test me for everything under the sun.
My nephrologist said within minutes of meeting me it was Lupus. He put me on prednisone and lisinopril. (I'm not sure how to spell that, lol) He wanted to get a biopsy of my kidney to 100% confirm. I was sent to an ultrasound tech to get images of my kidneys, and there it was discovered I had severe blood clots. I was told to go home, pack some essentials, and go straight to the hospital. There it was discovered my clots started under my knees, went up through my body, and rested in my heart. Now, I'm not sure what they're called, or even where in my heart they were. I was trying so hard to learn all this information being thrown at me at once I couldn't keep up.
After a week and a half of being in the hospital, I was sent home on cellcept and Coumadin. Fast forward a year and a half- I'm doing great now; all of my levels are steadily increasing and I'm off the Coumadin and on a low dose, maintenance therapy Azathioprine. (my doctors agreed that because I was tested for every clotting disorder under the moon and they all came back negative, I would be okay to be off the blood thinners after a year. Plus, we knew where they came from- I was spilling all of my protein for months without knowing, and I was on the birth control NuvaRing. I'm being very carefully monitored.)

Wow, that was a novel lol.
my question here is about these disgusting varicose veins I was left with on my stomach. I'm a pretty tiny girl, and they're very prominent. They've gotten bigger since they appeared after all my blood clot-puffiness went away. I know having them forever is not the end of the world, I appreciate them versus the alternative of being dead. But, my nephrologist sent me to a vascular surgeon he really likes and she seems to think she can remove them. She said she will be able to make 8-10 incisions up my torso and remove the veins. I've tried doing research on this, but everything I'm getting back seems irrelevant because its leg varicose veins from being old/overweight/not at all the same situation. She said they would continue to grow until they're removed, and I'll probably have to have this procedure done multiple times as I get older. They're tender to touch and annoy me every time I see them.
I'm just wondering if anyone else has any experience with this. I know it's not common, and I'm not sure where to turn to. My doctor wrote a case study about me and tells it every time he can at conferences. He tells me all the time what happened to me was pretty rare. My nurse aunt told me she isn't even sure how I survived that entire ordeal.

But anyways- Hi everyone :) I joined this community a while back, but never had the guts to post. ._.

debbie-b
04-12-2013, 01:58 PM
My daughter is 33 and thin, but has a varicose vein on her leg, it is big and pretty ugly(her words). I think there must be another reason for getting them, besides age or overweight.
I have never heard or seen one on the stomach.
I don't blame you, for wanting them removed. Just make sure the doc knows, what he is doing.
You have been through alot and your aunt is right, you are very lucky, to have survived this ordeal.

Debbie

jmail
04-18-2013, 02:08 PM
I'm a 56 yo male, and didn't have vein issues until about 5 years ago. I've got a few "spiders" on my belly, a "mess" on the inside of both knees, quite a few on my calves, and my feet & ankles are a mess. You can see veins through my skin all over me. Of course, the pred I've been on for years doesn't help in that issue either, but my blood and veins have been getting mildly attacked by lupus for a good while now. Usually speaking (doctor surmising), mine is from when my platelet count goes low, and the ones that remain "expand" to try to make up for the shortage, which adversely affects the capillaries. It does impact my breathing when it's bad.