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

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

Apparently I’m Not Eating Enough Apples

I’m eating strawberries and peaches, not apples, these days, which may explain the medical appointments that appeared on my calendar.

Today was my Medicare Wellness Visit where you get asked all the questions you already answered on their e-checkin system. My BP was 136/62, which is great. I got the “Remember these 5 words” test that Trump nailed so successfully (my words were banana, tie, pen, house, car). This is a long way from an annual physical; I guess they think that we old people on Medicare don’t need to actually be touched but just answer a bunch of questions. My doctor is leaving her current practice tomorrow and I’m grateful that I was able to see her before she moves on, though I plan to follow her. She renewed all of the medications that she manages for me, then Cliff the Phlebotomist did the easiest stick for blood that I’ve had lo these many years. Tomorrow I’ll know what those red drops of blood reveal. At least this didn’t happen at 4am the way it almost always does when you’re in a medical facility. Oh, and I also got a referral to physical therapy for some ultrasound on the sore ankle. I really can’t feel a lot down there so I don’t know whether it’s better or not.

But one unexpected twist was being sent for a STAT ultrasound of my lower right leg to rule out possible deep vein thrombosis. My leg from toe to groin has been extra puffy with edema which we’re treating with diuretics, but a “squeeze test” of the calf almost had me jumping out of the chair, so DVT had to be ruled out. It’s a good thing that I went, because I just got a call telling me that they found a clot in my foot. What??? He called in a blood thinner for me to take once a day for three months which will dissolve the clot. But wow. Good thing I’m seeing my own cardiologist in 2 weeks. Good thing my doctor sent me for the ultrasound.

Tomorrow is a trip to see the pain doctor to review SI joint pains that have been giving me a hard time sleeping at night. I know I’m not sleeping in the best position to relieve those, but I don’t have much of a choice – I’m flat on my back with the bed raised up at the feet and a little at the head. I would give anything to sleep in my side but that’s just not in the cards. I don’t know if this doctor will think an SI joint injection would help (they have before) or if he’ll want to do something else.

Maybe I should just try eating more apples.