Not my eye!

I had two eye doctor visits this week for extra floaters and smeary vision on the right side (of course it’s the right side). It’s been like looking through a dirty windshield. The retina doctor confirmed this morning that I had a retina tear with fluid starting to come out – almost a detachment. Eeeeek! Scary!

He lasered the tear shut, describing it more as riveting in place. Those stinky floaters and “dirt” will take 6-8 weeks to settle, meaning dirty vision from one eye for up to two months. Booo. I go back in two weeks. Right now it feels as though there’s sand in it but my eye drops are helping.

I’m not to exert myself for the next two weeks, no lifting, keeping my head up. He said I should prop my head up with pillows to sleep but think I’ll just stick to the lift chair instead at least for the first few days. It’s amazing how often we look down to do things, including transferring from one chair to another. I’m not quite sure how I’m going to manage cleaning the litterbox and feeding the girls if I can’t look down to the floor. But I’ll figure something out and my neighbors will help.

I had a retina tear in the other eye thirty years ago in Boston (and how on EARTH could it have been 30 years ago? wasn’t that just a year or two ago?) so I shouldn’t be surprised that the other side wanted to have one, too. Add in cataract surgery with a YAG procedure correction and the eyes have been through a lot. But I really need them and will follow orders to keep my vision intact as long as possible.

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.

Pressure Sores

I’m developing pressure sores on my butt. The only reason I know is that the friend who gives me massages noticed them last night. Right now there are just red spots, which is Stage 1, and nothing hurts. I don’t usually look at my rear end in the mirror; obviously I need to change that, because pressure sores can be dangerous.

I already have a gel cushion on the wheelchair but I have another one purchased for a different chair that I will put on the lift chair where I sit in the house; that will help. Apparently I also need to increase my protein intake and drink more water, as well as being more intentional about shifting my weight and changing positions.

The good news is that now I know that I’m dealing with this. I’d forgotten that it was a possibility.

What the Doctor Said After Thirteen Months

Today was my final visit with my spine surgeon, thirteen months after my lumbar laminectomy last summer. I did my research and had my questions ready on the phone so I wouldn’t forget to ask anything important.

Biggest question – Is what I have now what I’m going to get post-op? Answer: Probably yes. He does not discount the power of prayer and continued hard physical work to see additional progress, but most of the improvement comes in the first year. I have good leg strength but my ankle has almost no improvement and there continues to be numbness, tingling, spasms, and pressure. That probably will not go away. He is very pleased with how much I progressed, which tells me that he may not have thought I could come this far, so I’m not complaining.

Will the stenosis come back? Answer: Not before 15-20 years if at all. My spine was very well cleaned out of compression and he doesn’t think it will be a problem. I do have some compression issues at other points (specifically S3) but have NO plans for any additional surgery, though I’ll monitor things to see if they change.

Should I plan to continue PT for the long term? Answer: No. It does the most good in the first 6-8 months, though help for specific functions (such as using the rollator) would warrant additional sessions. I must continue leg and arm exercises on my own, which I already figured out.

What about using a power chair? Answer: As long as I don’t overuse it, it should be helpful. But I cannot stop walking or I will lose the ability to do it. I should aim to use a rollator and manual wheelchair in my apartment, walk in the hallway for some longer distance practice, and reserve the power chair for longer distances to keep from straining and inflamming my arm and shoulder.

What kind of doctor should I be seeing for continued care? Answer: A physical medicine and rehabilitation specialist, usually found associated with pain management practices. But for the most part, I probably will not need to be managed. If my primary care or pain management doctors can’t figure out what I need, I could go to a specialist in my current pain management practice. Mostly I’m going now to manage SI joint pain with medication since I can’t have an injection due to blood thinners for the blood clot.

I like my surgeon and would recommend him, though I hope no one I know needs a spine surgeon anytime soon. I’m also glad to have graduated from his care. For now, I’m using my rented wheelchair until my Phoebe chair gets evaluated and fixed, hoping that will happen on site on Wednesday when the service guys come. There are things I don’t like about Phoebe but there are more things I don’t like about the rental chair and I want to get back to normal as soon as I can.

More PT Ahead

My right shoulder has been killing me. Isn’t it odd that all of the aches and pains and sprains and tingling – even the blood clot – are happening on the right side? Very lopsided. In any case, the physical therapist was here this morning to do an assessment of the shoulder/arm in response to a PT order from my doctor. He also assessed the ankle; the order for that came through when I sprained it, but was postponed when they found the blood clot. It’s been unstable so it got assessed and I get more PT.

There seems to be a nerve impingement as well as super tight muscles. Right side testing was considerably shortened from the normal left side, so PT will help. I got three stretching exercises to do in the morning and will go to PT twice a week for some indefinite time, because we’re also going to add in some work with the legs and walking. Chris was impressed with how much walking I’m doing on my own, so that feels good and as though I’m not slacking off somewhere. Pain needs to be heeded, and pushing the shoulder pain could result in other problems for me.

Also got instructions on how to shrink my giant abdominal hematomas and clarification of why I’m not to wear AFO’s on the NuStep. Wearing them supports the ankle but it can disguise any rubbing of the foot in the brace/shoe that could cause more problems. No one explained that before, or at least I don’t remember it, just that they didn’t want me wearing AFO’s on the machine. Got it. I think I need to reverse my shoe plans so the AFO’s go on first whether I think I’m walking or not, since they support the ankle. Mid-afternoon I’ll take them off and put on the zipper shoes to do the NuStep. Or not, if it’s not a NuStep day. I’ve been doing that backwards and I’m more likely to make myself go walking if the AFO’s are already on.

I’m not reluctant to walk. The problem is the cats, who want to go out in the hall with me when I go. I’m slower than someone not using a walker (or wheelchair), and they could easily get past me into the hall. So I try to plan my walks when they are flaked out asleep on the porch or in their boxes or other sleeping places. If they don’t cooperate, it makes things harder, and that’s when I wait and sometimes the walk just doesn’t happen. Life is like that.