One Year Out of Rehab

I’ve been out of residential rehab for a year this week and am so happy to be home, living my life as independently as I can (which is most things). I’ve learned how to adapt to things that seemed impossible when I first got home, and others may be time consuming but very doable. They seem like small things – taking a shower, changing the sheets, putting on AFO’s, making cookies – but each was a major challenge. But I live here independently with my floofy girls and do more than just worry about whether I can stand. I have two more weeks of PT working on my inflammed shoulder and then I’m on my own again. I’m so ready.

Walking:

For the last 2 weeks, I’ve been walking with a rollator in physical therapy. Right now it lives up in PT so I’m using my regular walker at home and to my surprise, I’m finding the rollator to be easier to use. When I tried using it a year ago before I was discharged from rehab, it was a disaster. My legs are much stronger now and my rollator is appropriately sized, so I feel stable. I also know how to use the brakes to keep the rollator from flying away from my feet. I’m easily walking about 150 feet using it which may not sound like much but it means I know I can handle it in the apartment with shorter distances and I feel confident about bringing it home to use on my own. If I need to, I can hire someone to walk with me for 30 min a day when I first start using it here.

Sleep:

My sleep has finally turned around. I’m making myself stay up longer in the evening, which seems to have eliminated my “get up in the middle of the night to pee” problem. I use my nifty flexible “bed ladder” attached to the bed frame to roll over so I can sleep on my side, which eases lower back pain. I usually find myself on my back by morning, but have figured out how to set the adjustable Sleep Number bed to be comfortable and supportive. And best of all, my CPAP problems were fixed by adjustments made by my DME provider so I’m getting plenty of air. After months of short nights mostly spent in the chair, I’m now getting 8 hours of sleep and have plenty of energy during the day.

Blood Clot:

Two ultrasounds in early July found a blood clot in my right thigh. It’s a chronic thrombus or DVT which means it’s been there a while and has hardened and attached itself to the femoral vein from above the knee almost to the groin. Yup, it’s big. They did the ultrasound in the first place because my leg and foot were swollen and super tight. The doctor explained that, because of the clot, the blood couldn’t get up the leg through the narrowed vein. What made it swollen wasn’t water retention, it was blood. They put me on blood thinners to dissolve the clot, though it could take 6 months for it to go away completely.

Three months later, things have improved. Two follow-up ultrasounds show the clot is still there, but my foot looks normal in the morning and only slightly swollen at the end of the day. Foot and leg are more swollen if I have to spend lots of time in the wheelchair with my legs down, but even then, the leg “gives” more than it did three months ago and feels more normal. I elevate my legs in my lift chair when I’m home and also raise up the lower part of the bed at night, which all helps. Elevating didn’t really do much before and I’m not sure how much it’s necessary now, but I’m happy to have more normal legs.

Hopefully the whole clot will be gone by the end of the year. I’m thinking I’ll probably need to stay on the blood thinner to be sure another clot doesn’t develop, but we’ll cross that bridge when we get there.

Image credit: Photo 155001899 / Progress © Designer491 | Dreamstime.com

Let’s Do Another Ultrasound

Today’s doctor visit was to Vascular Specialists of East Texas and included another ultrasound of the right leg with lots of waiting in between things. First the doctor told me that the DVT found in last week’s scan wasn’t in the foot at all, it was in the thigh. Oh. Wondering how last week’s doctor decided that it was. Doing the scan involves needing help to take off my pants, shoe, and compression socks as well as help getting my legs up on the table. Then it hurts when they push the probe deep into the leg – but that I expected.

Today’s ultrasound showed what’s called a non-occluded chronic thrombus in the thigh, on both sides of the femoral vein. The passage is narrowed and, although blood can pass through, some is pooling in the calf, making it swell up. No wonder diuretics were not helping; water retention wasn’t the problem.

I’ve been on Xarelto for a week but today learned that they were taking me off of it and putting me on Lovenox, which is an anti-coagulent that is injected into the stomach. In my case, twice a day, because of my size. Lovenox can be dosed based on weight for maximum effectiveness. I had daily shots of it for two months while in rehab. I don’t like giving myself the shots but understand why I have to do them. I just wish I could get a refund on the $356 I spent on Xarelto last week.

I go back in a month for another ultrasound to see what’s happening with the clot. Or DVT. I’m not completely sure if what I have still is a DVT or if it’s something else. But whatever it is, it’s serious and I’m paying attention.