I seem to have caught a cold; either that or my allergies have descended in a huge cloud or something. I have been hacking since last night. Produce is clear, but bubbly, and I feel like I’ve been beaten about the rib cage from all the coughing.
This is the kind of stuff the roomie is particularly useless at dealing with, so she has been hiding in her room since the choking/gagging started. Today, she has plans with some friends, and was just going to go out, leaving me without breakfast or a drink. She won’t be home until about 5 pm (transit on a Sunday is iffy at best, lately), and I just cannot stand long enough to cook something, so this is not a small thing. When I asked her about it, having spoken to her at about 8 am, I got her usual obliviousness. When I asked her as she was getting ready to leave at 11 why she hadn’t asked me about breakfast, her response was “You were asleep.” This is one of the disconnects about her that scares me. This is one of the reasons I do not feel completely safe and secure in my own home at the moment. It’s not that she means evil — I know she doesn’t — but that she is totally oblivious to far too many things. And, right now, I cannot hold up the ball for both of us. Add into the mix that a friend of ours has recently made the decision to discontinue her dialysis appointments, and the roomie is even less functional than usual. (It took two of us to get it into her head that, even if she is not happy with the friend’s decision, it’s the person’s decision to make, and we all need to respect that.)
I have been blessed to have mostly good days so far with this recovery, but days like this scare the heck out of me. They make me feel helpless, which is never good. I would call someone to come and sit with me, but most of the usual suspects are busy today. Further, now that the roomie has left the house, it would be difficult for me to get to the front of the apartment to let anyone in.
So, I am feeling very stuck and vulnerable today. I know in my head that this will pass, and that I will soon be able to do more for myself, but it’s still very scary – especially since the last time she left me alone, she lost her keys and decided that having the landlord break in through my bedroom window would be smarter than calling me to tell me she needed me to let her in. I still have slight nightmares about waking up and hearing someone trying to break in through my window while screaming at me in Russian. Not a good feeling.
The worst part is that we now suspect that there may be one or two things causing these disconnects, neither of which is great, and both of which mean that I will end up being a caretaker at some point in the future. Having railed in the past about having to be the responsible adult in this household, this scares me no end, especially since one of her passive aggressive things is to demand that she be taken care of, then balk when you try to do so.
I am going back to bed now, and praying she doesn’t lose her keys again, or her phone (she loses that about every six months or so). Hopefully, I will finally get some sleep; feeling sleep deprived because I am too busy hacking up a lung to fall asleep is definitely not helping matters.
I saw the cardiologist on Wednesday, and my primary care guy on Thursday, and they are pretty pleased with how things are going. Both like my ideas for once I am cleared for doing light exercise: walking, chair or cardiac yoga, and hula hooping for a bit of cardio. My primary care guy says I should discuss a cardiac rehab with the surgeon, and that it would be like a gym for me, but without trainers who think you should be killing yourself to run marathons or suchlike. Will take his advice, as he knows me really well. My next two appointments are the neurologist for the nerve test I had to postpone because I got a good date for the surgery on the 28th, and the surgeon for a follow up on the 29th.
The bad news is that doing the eight or so steps to and from that particular office pretty much wore me out. Therefore, in addition to not doing dinner with the usual crew today, I am pretty much writing off FIStFA this month (about eight steps to get into the building, and another eight to get out) and the traditional Seder at my friends Jon & Debbie’s (about 13 steps each way once I’m in the house; about four to get in and out). Still, I am healing, and this is the main thing.
I was able to sleep on my right side, and on my left side, for a bit overnight, which is a major improvement! I hate sleeping on my back, no matter how many pillows you shove under me.
The roommate’s disconnects seem to be getting worse again, though; this means I cannot count on her for any real help. She does not lift her feet when she walks and her shuffling and getting her feet tangled in wires without noticing almost brought the lamp down on me twice yesterday. Her response when I pointed this out was to tell me that I should throw boiling water on her to punish her for her bad behavior. Or maybe I should kill her like she deserves. The bad thing is she wasn’t kidding. She really believes she deserves punishment of some kind, just for existing. I’m scared, because this is not the first time she has come u-p with these totally out-of-proportion-to-the-issue punishments for herself. She claims her parents never punished her like that, but I cannot imagine that she could come up with these things if *someone* hadn’t abused her as a kid. To her credit, she did make an appointment to talk to the primary care guy about getting a referral to be evaluated for autism or something along the spectrum. But I am totally scared for her. Hell, I’m an ex-battered kid, and I can’t come up with the thoroughly vicious things she believes she deserves.
I’ve been on the phone twice with the VNS this week, since they seem to be dragging their butts about getting me the physical therapist and the home health aide. If I don’t have an answer on these by Monday, I am going to call the Medicaid HMO, and let them read the VNS the riot act. I just don’t have the energy.
Since I can’t concentrate enough to read, but I can do simple knitting, I made a pattern called the Ritalin Shawl that I found on Ravelry. Used up some of my favorite Noro sock yarns. I plan to make another over the next few days.
I still can’t stand long enough to do actual cooking for myself, so the roomie is making our meals. She’s trying to use some spices, so things don’t taste bad, but the meals are still pretty bland and mostly the same: boneless, skinless chicken breast, or small pork cutlets, a fair amount of starch of one kind or another, and some frozen veggies. The only good thing is that she does like Brussels sprouts and beets, which I also like, but mostly the veggies are whatever frozen veggies were cheap at Family Dollar. If I make a list, she might remember to get some fresh produce, so I’m gonna try that later. Also going on the list, some nice plum tomatoes and some bananas, so I can keep my potassium up while I am on the amiodarone, the furosemide, and the increased dosage of the metoprolol.
She did finally get a replacement key for the house key she lost, so I don’t have to lend her my key if she goes out. She also got a couple of spares, which have been placed where I know about them, just in case she loses her key again.
In other things, I have spent much of my adult life with very itchy skin. Since the surgery, I have had almost no desire to scratch. I see this as a vast improvement. I hope it continues.
So, to recap. Other than being scared about the roomie and her disconnects, things are going pretty smoothly for me. I’m a bit impatient to be able to get back to doing things, like being able to walk the length of the apartment without having to stop for a rest, but that will come. I also can’t wait until reaching high or low is not an issue, but that will come, too.
Had my first follow-up appointment yesterday – the Cardiologist. He’s mostly pleased with where I am, and that I have not had another A-fib incident. Sadly, I also had my first encounter with stairs; the stairs to his office, which is also my primary care guy’s office are fairly steep, and the handholds are wobbly. But I made it up the stairs and into the office. Getting on the examination table was another story, however. I have trouble doing that even when I’m in good health with all the weight lost. That little shelf for your feet is too small to turn comfortably on and there was no way it was happening today. I rolled the office chair to the side of the room with the blood pressure cuff, so that could get done. When the cardiologist came in, he told the nurse she could do my EKG from a sitting position, so I rolled the chair to the other side of the table, and we did that. So far, I seem to be on track.
When I got home, I called the Visiting Nurse Service, because I hadn’t heard from the Physical Therapist they were supposedly getting for me, nor had I heard anything further about the Home Health Aide. The Home Health Aide is still in the application stage, so that’s that for the moment. However, I have been approved for a Physical Therapist, and they are just trying to find one to assign to me. I’m not taking bets on whether I manage to get myself rehabilitated (Thank you, Arlo Guthrie!) before they assign me one or not, though.
Today is my second follow up – my primary care guy. Willpost more later, if any news.
Today has been a good day. I’ve been up since about 7 am, and have not spent large portions of the day napping. I was able to get to the bathroom and back without my cane — several times. I was able to sit at my desk for larger portions of the day than previously. I was able to get clothes on — including the compression bra, and wear it much of the day. I was able to sit up through my friend Adria’s most welcome visit. I was able, using my cane and making one stop each way, to let Adria out of the house when her visit ended – which meant walking from one end of the house to the other, and up the hall step so I could get the door unlocked and open. I was even able to get some knitting done. I’m still using the spirometer every time I think of it, which is probably not nearly enough. It is, however, more than most people use it after leaving the hospital. Some of my appetite is returning, although I’m still not eating a lot at any given sitting.
I noticed this morning that I seem to be getting a cold, so I called the surgeon’s office to see if it was okay to take my normal cold meds (Coricidin HBP – Cold and Flu), and got the okay to do so, since getting a cold right now would be a Very Bad Thing.
I have had the first home visit from the nurse. I need to call them tomorrow and see what happened to the physical therapist they said they were assigning me.
Tomorrow and Thursday will be used largely for my first two follow-up visits; both at the same office four blocks from home: the cardiologist is Wednesday, and my primary care guy is Thursday. It will be interesting to see how much effort it takes to get up the stairs to the office.
Tonight is the chat for the club I’ve been in since 1972. We’ve been doing online chats once a week for a few years now. Sometimes, they are well-populated; sometimes, they are just a few of us.
Anyway, such is my life today. More news when I get it.
First, I note that I am a bit depressed today, which will probably color this to some degree.
I got home on Wednesday, 2 April, and was very glad to do so. I was supposed to come home on the first, but I had an A-Fibulation incident (right after the discharge process had been started, no less), and they wanted to observe me overnight, which made sense.
When I got home, we picked up the roomie, dropped off my prescriptions, and went to get some lunch. At that point, my energy crashed, so Nancy T and the roomie picked up food while I waited in the car. Eventually got into the house, and over to my desk, where I ate lunch.
The next day, the roomie had some family stuff to do, so Debbie B came over and sat with me until Naomi M could get there. Spoke to the VNS folks, and an appointment was set for Friday. I now can make it from the bed to the bathroom and back, mostly without having to stop along the way. At some point I had a conversation on the phone with Nancy, and we realized that we might have a clue for some of the roomie’s disconnects. Told her and she agrees that it is a possibility, but for now that’s her story to tell, not mine.
Friday, the roomie went out to do some errands, while I settled in for a nap. I woke to someone trying to take the air conditioner out of my window and yelling at me mostly in Russian. I started trying to call the roomie figuring she was back, but she wasn’t. She had lost her keys while running errands, and decided it would be a bad idea to make me walk to the front door to let her in. Instead, she went to get the Landlord – who was in Pennsylvania with his wife. The guy yelling in Russian turned out to be his father-in-law. (Why she thought it would be less stressful to wake up to someone trying to break into the house than to have to take the time to walk to the front door is beyond me.) She still has not found her keys, btw.
Nor has Naomi found my glasses. Not the end of the world, since I have two spare pairs, but still no fun.
According to the Visiting Nurse Service, I will be getting Nursing visits for 5 weeks, tapering off slowly; and five weeks of PT, also tapering off slowly. They are also trying to get me a home health aide for some part of that period.
Oh, and, of course, my usual problems stemming from the surgery back in 2008 have kicked in, so I feel exhausted.
Visits and phone calls are welcome, but I may not be up for much talking at any given minute.
So, that’s what’s happening at the moment. For now, I’m gonna crawl back into bed.
My surgery was March 26th. I feel a lot better already, and am slowly starting to get my energy back.
There will, at some point in the next few days, be a wrap up about the surgery post, but I just don’t have the energy tonight.
Needless to say, the rest of this month will consist of various followup appointments.
My first day home, I woke up to find a Fred Email, bemoaning the great wrong he perceives me to be doing to him. Just like with my sister, my surgery was not about me, but about them and how I consistently don’t do right by them.
However, as I noted in a semi-private email this morning, I have – for the most part amazing friends who go to great lengths to try to actually be useful and helpful in emergencies.
Thank all of you who have helped. You all truly humble me, and humble is a word I very rarely apply to myself.
My pre-surgical clearance work is set for Monday, 24 March, at 10:30. I will be getting a ride in and a ride home.
My surgery is scheduled (should nothing else go wrong) for Wednesday, 26 March, time TBD. The location will be Mount Sinai Hospital, in Manhattan. I am told that I will be in CCU for a few days after the surgery, with very limited visiting, and I probably won’t be up to talking on the phone a lot. If you are local and want to visit, I suggest checking with the hospital for visiting hours and durations or if you know Marc G. or the roomie, call them. After that, I will be transferred to a regular room for several days. Beyond that, it is probable that I will have to go to a rehab place for a few more days, and have some aid at home after the rehab. Tentatively, recovery is supposed to take from six to eight weeks.
I’m mostly holding up okay, although I am scared (which makes total sense – I’m about to let someone literally mess with my heart, and they will have to separate the sternum to do so).
Here is a URL for some information on the surgery I’m going to be having, just in case you want to find out a bit more. Not sure how much I will be blogging between now and going in for the surgery, although I will try to write about the pre-surgery stuff on Monday evening.
To all my friends, I love you; to all my readers that I don’t yet know, I value your taking the time to read this blog; to any family reading, I love you. While I truly believe I will come through this and recover just fine, I did not want to close without saying it – just in case.
See you all Monday.