Compression garments help me a lot
Caitlin: Compression garments help me a lot because if I walk for more than 10 seconds without them, everything I see starts going sort of black a little bit, then I sit down and it gets better. They help me walk longer, and without getting tired, without me having to sit down, and they help me not get as many clots…
Mom: It’s very challenging when she has to get new ones made because whoever’s measuring her has to get the exact right measurements. It’s a challenge because both of her legs are different. We’ve had them where we’ve had to send them back, and they didn’t feel right on her, they’re too loose or [something] so it’s hard to get that right person who knows what they’re doing, to get the right measurement. But they usually last, we get new ones every 3 or 4 months.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
Compression garments are definitely a lifesaver
[Compression garments] are definitely a lifesaver. When I was a little kid, I wouldn’t necessarily need to wear those every day in order to feel good. As I’ve gotten older, the pain has gotten a lot worse and it’s definitely progressed to a much more advanced level. Right now that’s one of the challenges that I’m dealing with, just this relentless pain, and my condition has definitely grown worse from when I was younger. So one of the things that I rely on, on a day to day basis now, is my compression garments. Right now I have the 30 to 40 compression and the 40 to 50. I find that the 30 to 40 doesn’t really do much for me, but again, it’s dependent on the case; for some people that might make a world of difference. Of course you have to get fitted somewhere for the appropriate measurements and your doctors will tell you what compression they think is best for you but if I know I’m going be standing a lot during the day, the 40 to 50 is my go to thing because it definitely helps keep the blood flowing and the circulation movement and helps a lot with the pain.
Erica, young adult, Klippel-Trenaunay syndrome
It’s not worth going without it
During the summertime when it gets really hot, you don’t always want to have this heavy compression garment on. It can take a while to get on, it depends. I have ones that go up to my knee, that might take 15 minutes to get on, but if I have one that goes all the way up to my hip, that can take a good half an hour to put on. Sometimes if I’m running late for school in the morning it can be a little bit of an inconvenience and you’re like “Is it worth it to put on when I might be a little late?” But my advice would be, bring it to school with you and ask to go put it on in the nurse’s office because it’s not worth going without it in most cases.
Erica, young adult, Klippel-Trenaunay syndrome
Be really careful about measurements
The one thing that I would mention for kids when they are growing in a compression garment is just be really careful about the measurements, and factor that in because at one point in time the company that we were using was no longer making them and it had to be outsourced to Germany. This was again around when I was 13, so I was growing, and it took 6 months to get the compression garment back and it didn’t fit at all, that thing was painful, it was un-wearable. So that was certainly something.
Sarah, young adult, Klippel-Trenaunay syndrome
Wearing compression garments now
Some of those companies have bright colors; once we were able to get one that had a zipper in it which was nicer. What I resorted to now is I actually have one that isn’t custom fit for me, but I just wear it on my right leg. My left leg doesn’t have much involvement, so getting those panty hose type things on and then wearing that all day is really uncomfortable. I swear to God, I think I gave myself a UTI because I didn’t even want to deal with it when I went to the bathroom, so I just wouldn’t go to the bathroom because I didn’t want to have to take it on and off. For like 7 or 8 years, from the time I was 13 to a little over 20, I didn’t wear one at all, and I can appreciate the fact now that with wearing it, my swelling is certainly better, my pain is better, my mobility is even better because of those other two things being better. But again, something that comes with age I suppose.
Sarah, young adult, Klippel-Trenaunay syndrome
It’s basically providing pressure
How much compression you need depends on your condition. I happen to need like 30-40 mm of mercury, which is pretty high compression. Whether you’re going to think of it as like a pantyhose style, or the one I have is one leg and I just wear up to my right thigh, they basically look like what normal pantyhose would except that it’s kind of difficult to get them on because they’re made to compress things. Once you have them on, it’s basically providing pressure. Particularly in my case, I have these venous abnormalities I’m very prone to getting swelling in my leg, so it kind of counteracts those forces. It keeps fluid from backing up into my leg, and compensates for the fact that in a normal person, your veins would just carry that fluid back to your heart. These things have a tendency to pool so you need that pressure to keep it moving and not get it stuck in one place.
Sarah, young adult, Klippel-Trenaunay syndrome
They should wear them or else you’ll turn into what I did
Online now there’s a bunch of people that have my disease but not nearly as bad. We went through and we were talking to each other about it… I’m just glad to see there’s other people out there trying to do something about it and not sit like I did. I sat for so long, and I knew I had like the pressure stockings I could’ve worn, but me being a stupid kid, I didn’t wear them, so my disease got progressively bigger. I preach to people now that don’t want to wear them that they should wear them or else you’ll turn into what I did and you don’t want to go through what I went through.
Carlos, adult, Lymphedema
The compression garments are for the edema
Well, the compression garments are for the edema. Basically the veins don’t have the muscular lining that your regular veins have to pump blood back up to your heart. If my hand is down for long periods of time, it will just swell up, and so the compression garments help to counterbalance that. If you think about varicose veins, it’s a similar diagnosis in the use of the compression garments, it’s supposed to keep the blood from filling up too much, the veins don’t get as large, they don’t get stretched out too much. .
Katherine, adult, Venous malformation