New year, new blood clot

Instead of one blood clot in the thigh, I now have a second one in my lower calf of the same leg, which I discovered after going to the ER on New Years Day evening. The male PA poked my legs once, looked at a chart and at me, and said that he thought the problem was water retention, but that we’d do an ultrasound anyway just to be sure.

I was ready to sock him. I know the difference between edema due to water retention and edema from something else. The last time I had the same symptoms, they found a big chronic thrombus in the thigh after I complained long and loud that taking diuretics wasn’t fixing it. This time I also had sharp targeted pain in a specific spot on the calf and my foot was blown up like a water balloon.

And, when the ultrasound tech got there 3 hours later, she did indeed find another clot. She showed me the screen as she did the scan, which was cool. And gratifying. They decided to admit me but there wasn’t a bed available until 3:15am. I had a lovely private room and was there until discharge on Wednesday afternoon.

I saw the nurses when it was time for meds, and the CNA when it was time for vitals or when I pressed the Nurse button. I needed help to use the bedside commode. Well, actually, I didn’t need it once I asked them for a walker and to put the commode in front of my locked wheelchair so it was braced and stable. I could get my legs out of the bed by myself and finally figured out how to use a twisted bed sheet as a leg lifter to get back in on my own. I do this all the time at home.

My first day there was the Monday observance of New Years Day, which meant that doctors they needed to talk to weren’t working. I spent time watching TV, including many hours of Kevin McCarthy losing votes for Speaker, and reading reports of blood tests and doctor consults on the MyChart app. That’s how I learned the hospitalist had consulted with the vascular surgeon and the hematology/oncology people.

I also learned that all of these reports had a lot of wrong information because no one asked me the questions. I suppose the medical people think that all people in wheelchairs have problems I don’t have. I do not have urinary incontinence. I do not need daily assistance with Activities of Daily Living (ADL). I do not live in Assisted Living. I do not need a daily nurse visit. I manage my own meds.

A physical therapist came to evaluate me and was impressed that I could stand up on my own from the bed using the water. Dude, I’ve been doing that for 15 months. I stand up all the time. I couldn’t walk for her because I didn’t bring my AFO’s since my foot was too swollen to fit into my shoe when I left home. Mostly it was not a very productive visit – but at least I got to see someone.

The social worker apparently picked the exact same time as the PT to come see me. But instead of coming back, she called my brother who is my contact person. Tom pointed out that I was compos mentis and could answer her questions myself. Her report was full of wrong things that made me seethe. I don’t think any of them were that important but together it was just sloppy work.

One thing the doctors did get right, though, was admitting me as an inpatient and not for observation, something I asked about that first morning. I knew that there was a difference in how Medicare covered hospital admissions for those two categories. I was relieved when the doctor said I was admitted as an inpatient, which means that Part A covers the stay.

The hematologist finally saw me on Tuesday evening. He told me I need to stay on blood thinners for the rest of my life, which I had already figured out was probable because of my weight, the fact that I already had one clot, and the sedentary life I now live. Switching to Lovenox (with the shots in the tummy) isn’t a good idea, and switching to Warfarin would require regular visits to have blood checked to regulate dosage. That’s not as easy for someone who has to arrange for transportation for every visit. Xarelto is wicked expensive but it’s just a teeny pill that works the same as the others.

But I still don’t understand how I was admitted to the hospital with a second clot that developed while on Xarelto for 6 months and went home 4 days later with exactly the same problem and medicine. The vascular surgeons are going to monitor me and plan to treat it all with medication and not surgical intervention, so I have a scheduled appointment with them and another with my primary care doctor to get more blood work done (oh joy). It will also be my face-to-face visit required by insurance in getting a power chair. I have lots of questions for all of them.

ADDED: One good thing that happened, though, was getting a DNR prepared, witnessed, and is now in my permanent file at the hospital.

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

My poor tummy

I’ve been injecting my tummy with Lovenox twice a day for the last 30 days as prescribed by the vein specialist. I’ve never done injections before but didn’t think it would be all that hard. After all, I’d already been through two months of once-daily Lovenox shots when in rehab last year, and while I didn’t like it, it wasn’t hard.

No one told me to expect to get hard lumps at injection sites. Bruising, yes, because I’m injecting blood thinners and the bruises are blood bruises. But not the lumps. And now my tummy is full of small hard spots and two really swollen ones on each side that are at least 4-5 inches long and 3 inches wide, hard as a rock and very sore around the margins. I feel as though an alien is poking out through the stomache.

Tomorrow I go back to the vein guy for another leg ultrasound to see if the clot is actually dissolving, which is of course the goal. I know it’s not gone because my leg is still swollen, though it might be a bit better. But we are definitely going to have a chat about Lovenox and what other options I have. Because there has to be one and I do NOT want to keep stabbing myself with needles.

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

Birthday Cake for Breakfast

Today is my birthday and I had carrot cake for breakfast because, why not? My brother and sister-in-law brought it with them yesterday to celebrate my day a bit early, and there are carrots in it, so it’s healthy. It certainly is tasty. Cecelia gave me the best b’day present ever: a massaging foot bath followed by nail trim and foot massage. Honestly, my feet have been so unhappy (it’s been 3 months since the podiatrist was here and I really can’t cut my own nails because of the neuropathy) that it was the perfect gift. Plus I’m touch deprived and dearly miss regular pedicures and massages. At least I can touch and cuddle the cats, even though they’re not all excited about being cuddled.

For my birthday, I’m buying myself a loveseat for the living room. This was the original plan last year when I moved in but it never happened. Now it’s time. I’ve had a great time looking at furniture online and trying to find something that’s not too big, not too boring, and made of lighter colored fabric that the cats won’t want to immediately claw. They leave soft chenille fabrics alone so that’s what I looked for. I also bought a coffee table from Pottery Barn in wood and metal that will match my shelving unit. Both loveseat and table will give the girls more places to nap and change up the look of the space while still giving me ample room to wheel or walk around. I needed more space for that when I first moved here but I know what I’m doing now. It makes a difference.

My belly is sore from my twice-daily Lovenox shots, and I have lots of purple splotches. I do morning shots on the left and evening on the right to make sure I’m spacing them out properly. The first few days I had waves of nausea that I finally realized were from the shots, and on one walk in the hallway found myself in a cold sweat bad enough that I turned around because I was so shakey. That might have been low blood sugar which usually isn’t a problem. I’m hoping these shots are actually starting to work on the blood clot.

I see the cardiologist on Tuesday for my regular annual exam and will see what he has to say about the clot. But first I need to call the vascular people to have a report of my visit sent to the heart doc so he has all appropriate information. We shouldn’t have to do all of this checking and tracking but I don’t expect the offices to do it on their own anymore. My work experience in dealing with vendor customer service for a zillion different reasons helps enormously but I wish I didn’t need it.