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

Vascular consult update

I had another leg ultrasound today. The good news is that things didn’t get worse and nothing new showed up. The clot/thrombus is still there and it’s going to take time to dissolve. My leg feels a bit softer when you poke a finger into it, which is an improvement.

Best news is that I don’t have to continue Lovenox shots. Thank you, God. Really and truly, thank you. I’m back on Xarelto once a day in a teeny tiny little red pill taken with dinner. No Lovenox should mean no nausea and better sleep quality as well as not being a pin cushion.

Strange news is that my belly actually has two large hematomas as well as some smaller ones. Everyone was quite impressed by their size. The one on the left has been there for 3 weeks and does seem a bit smaller, but it’s still quite hard. The one on the right side, up closer to the bottom of the bra, has been there a week and is 6″ x 4″, and quite angry around the margins. I’m to use a heating pad 4 times a day for 20 minutes, and ice for the same, for a week before checking in again by phone. If it’s not getting any smaller, she’s going to send me for a CT scan.

There really isn’t any bad news, which is good news.

Swollen leg update

This isn’t particularly exciting but I’m trying to keep track of what progress (or not) I’m making as I go through this recovery time.

As you know, I’m on Lovenox because I have a blood clot in my right thigh. I inject it twice a day on the left side in the mornings and on the right side in the evening for no particular reason except they need to be spaced out. No one mentioned several things that would have been good to know. First, I needed to get a sharps container for the discarded syringes. Amazon came to the rescue yet again. Second, those injections can and often do leave hard lumps under the skin, and with all of the injections, those lumps start to run together. I have one big lump about 4 inches long and 1.5 inches wide plus a few assorted scattered other lumps. Third, because this is a blood thinner, I’m ending up with lots of purple blood bruises. Bottom line is my tummy looks like someone beat me up except it doesn’t really hurt, it just looks bad.

It’s hard to tell if the injections are doing any good. Various medical people told me that the clot would dissove in about a month, two months, three months, or up to six months. So it’s really too early to tell if anything is happening yet since it’s just been two weeks. I do think my right foot isn’t quite as puffy as it was and in the morning, it looks almost normal. The leg is still very tight and swollen and there’s lots of pitting if you press the skin with a finger. But maybe there is progress.

I finish my 30 day supply of Lovenox before my next appointment with the vein specialist, so I need to call the office to see whether they want me to refill the prescription (at $252) or take Xarelto that I already have left over from the FIRST doctor to see the DVT. I know I have to keep taking something, just not what.

I would really like this leg to be normal. Beyond the clot problem itself is the heaviness of the leg because of all the pooled blood in the calf. I first noticed the difference between right and left about 10 days after my surgery last August, and it’s never completely gone away. Walking is more complicated because the legs don’t fell the same when they move. The right one feels big and clunky, as though it’s pulling through water. I’m hoping getting the clot dissolved, whenever that happens, will make the walking feel more balanced.

Image credit: Photo 58182878 / Sharps Container © Sherry Young | 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.

Today’s updates

Just got back from my first longish walk in two weeks (before the sprained ankle). I spent two days this week walking around the apartment with the walker, but today I went out into the hall, down to the elevators, and back again. It wasn’t as easy as it was two weeks ago but I only needed a few very short standing rest stops on the way back. I probably should have stopped at the fire doors instead of going all the way to the end of the hall but I’m not sorry I did what I did. But I’m also not going back out to walk the other half of the hall today, either.

Second, I’m seeing yet another doctor on Friday, a vascular specialist. They’ll probably do another ultrasound (of course) or two so they can check out the other leg as well. I’m actually glad for the referral since the right leg has been swollen and heavy for so long. I’m hoping the specialist will figure out what’s going on and come up with a plan to treat it.

I asked the office to email the registration forms so I could work on them at home. Being me, I converted them to fillable PDF forms so I could just type the answers instead of trying to write really tiny letters to fit in the too-short spaces. Bet they’ll be surprised when they get them.

Image credit: Photo 18832936 / Vascular © Qiming Yao | Dreamstime.com