She’s had so many cellulitis infections
Mom: She’s had so many [cellulitis infections].
Caitlin: It gets really red, and when you touch it, it really really hurts, like I can’t put my stockings on. It’s like I have to wear really loose pants because it hurts even if your pants are touching it. It even causes me pain when you’re not even touching it. It hurts more than anything, really. It hurts more than the clot… I have to be put on really strong antibiotics to make it go away, and I already miss a lot of school, so it really puts me behind in school.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
Infections can come on one of two ways
Infections can come on in one of two ways; one way would be I would notice an area starting to look red and the pain would come afterwards along with the high fever. Another way that it can come on for me (and of course this is different for everyone) is I’ll start to feel soreness and then the redness will accompany it later on. The cellulitis infections are very sporadic, you don’t know when they’re going to hit and those kept me hospitalized constantly throughout high school. My sophomore and junior years were definitely the worst because that’s when I was in the hospital most consistently. Then my senior year they started to die down a little bit, but they still come back. I’ve had some less severe ones since then that haven’t required IV antibiotics, that have required just oral antibiotics, but then a couple of months ago I was just hospitalized for one. So it depends on the severity of the infection; generally I’m hospitalized but some of them can be treated orally, depending on the case.
Erica, young adult, Klippel-Trenaunay syndrome
You have to do it
Generally what would happen after an infection in high school is I would be on this IV regiment for maybe a week or two weeks then I would come home. If I didn’t have a PICC line in me, they’d taper me off to oral antibiotics, and a lot of the times they would be very high dosages so they upset my stomach. . It’s kind of hard because you’re taking this pill that makes you feel kind of sick but you have to do it anyways or else you risk the infection coming back. There were some times where I was leaning with skipping a pill here and there and now I would never do that knowing the consequences. That’s part of being young and making mistakes and you learn and you go through it, but now knowing what the results can be of skipping even that one dosage, it’s not worth it.
Erica, young adult, Klippel-Trenaunay syndrome
My infections have gotten more serious
For me, I’m particularly prone to infection, so that’s been a constant battle ever since I was young; I get a couple of infections a year. Initially they were responsive to oral antibiotics but as time went on they kind of got more serious, so we had to switch to higher generations of drugs. Somewhere in my upper teens I got to a point where my infections were pretty much only responsive to IV antibiotics. So while most of my condition has improved over time, that’s the one thing that’s kind of deteriorated, my infections have gotten more serious. On the other hand, once that started happening we started being more aggressive. I started seeing interventional radiology more, and they did a lot of work under the skin trying to collapse lymph channels and irregular veins. I most recently developed an infection in August which did require IV antibiotics, but it didn’t spread to both of my legs. It stayed in a relatively small area, we got it under control really quickly, and I didn’t have to be hospitalized. So as far as the infections are concerned it’s kind of been a progression from I always had them, they got worse, we’re now being more aggressive, and I’m back to the period where they’re a little more controllable.
Sarah, young adult, Klippel-Trenaunay syndrome
Cellulitis outbreaks
I’ve had them a lot [of cellulitis outbreaks]. With me, it’s gotten to be to a point where I can really tell if I’m starting to get one. Basically, I’ll get an area that starts to be a little sore, and then for me it’s always a really rapid progression. Within 12 to 24 to 48 hours the area will become red and hot to the touch and visibly pink, I’ll start to spike a temp. Depending on how fast the progression is I then get nauseated, can’t keep things down. It’s kind of progressively worse over the years. I don’t think I presented as clearly when I was a child, but it’s gotten to the point where it’s pretty obvious when I’ve got an infection so pretty much as soon as those symptoms start to happen I get myself to a local ER or my local physician and try to get on some antibiotics.
Sarah, young adult, Klippel-Trenaunay syndrome