Betsy's Journal

Looks like she's leaving. I've had roofers here for almost 2 weeks, and when she's not in the back of the closet hiding under a pillow, she's either trying to escape, or supervising from a windowsill. 

I'm checking back in after several weeks. I have been kind of discharged from the valve program due to it being almost 2 months since my valve job and no complications, much. Not serious ones, anyway. I've been absent from here due mostly to a persisting foul mood combined with extraordinary activity at home, consisting of a new roof on my house, the departure of my long-term farm maintenance and repair guy, and a drainage project proposed by my neighbor to the south. It seems water runs off my fields into his garage every winter, and something had to be done, and the cost shared. I could say a lot about my mental state which still includes sketchy cognition and depression, but will do that another day because it is 3 am and I am, or should be, heading for bed.

I started cardiac rehab 2 weeks ago and have begun to recalibrate my perceptions of how much I am exerting myself. It is pleasant to feel my muscles in a way that tells me they are working. For a long time, I had to do so much less because my heart couldn't pump much blood oxygen out to the rest of my body. Now, with a 23mm valve opening wide, the blood pours through easily and I can finally use my body in a way that it has been wishing for. I have been doing cardio only but it bores me out of my mind, and this coming week I will start with free weights. I used to lift weights, some years ago, and I'm really looking forward to it.

My aging body isn't going to look like it did in my 30s, but I will feel and be stronger. There is nothing quite like growing up a farm kid for part of your self concept being about feeling sturdy and physically capable. The stenotic aortic valve rendered me weak and I felt alarmingly vulnerable. It seems I am not yet old enough to have to accept that as a permanent state. I don't know what I'm capable of, but I'm eager to see how I do.

My mood, ugh. Oh yes, I am saving that description for another journal entry on another day. I hope this finds everyone doing well, and I am glad to be back among you.

I am 2 weeks post TAVR. I'm taking a walk every day. I'm not a fan of taking walks. Before TAVR I was doing chores in the barn and pastures, feeding horses, loading up and pulling a cart full of hay and feed, checking the horses for wounds, picking up their feet, etc. The only part of that which made me breathless was pulling the cart.

My post procedure instructions were to avoid lifting, pushing, or pulling anything greater than 10 lbs. This was to protect the incisions into my femoral arteries. They are fine, healing up nicely.

I am trying to figure out when I can start back on my previous routine. The pulling and lifting are definitely more than 10 lbs. But I can't increase the weight gradually, because it's a lot more than 10 lbs. After 2 weeks there has been no guidance.

What's everybody else been doing?

2 weeks post TAVR, I finally felt like cooking something. This is a Thai-inspired curry and tofu soup. Good for a few days so I don't have to cook again tomorrow. 

I've been taking 1-2 strolls each day, not too strenuous. I go out to the mailbox and back (rural road, mailbox far from house). I go down to the barn and poke around sometimes beyond it, past the pond, as far as the burn pile and the hazelnut orchard, then back. Sometimes both those destinations.
Today, I went out to the mailbox, up the road to the neighbors' donkey pasture, and back home. This walk has the most slope, and I could feel it. But! It felt like exercise used to feel, back when I was a runner, taking a hill or on a new route with more slope. Noticeably using a bit more oxygen than I had.
But! It did not feel like it's felt for the last year, when my aortic valve was calcifying and couldn't throw enough blood through the diminished opening to provide my lungs and muscles with enough oxygen.
I can't describe the difference I felt between the 2 functionally similar (identical?) circumstances, because it was subtle, and because I can't feel both simultaneously to compare. But I have a physical template in my body, first laid down in around 1980, and made indelible over the course of the next 30 years. I have another, more flimsy template applied for about a year. They are different. I like the first one better.
I don't feel as vulnerable now because of course I have a durable cow tissue valve, which is brand new and working efficiently for me and I no longer have an active fatal heart condition. For the first time in a couple of years it feels safe to exert myself without fear of damaging my heart or keeling over with a heart attack. It is liberating.

Update. I was asked to come get a new EKG. normal. After some discussion with the PA, I was instructed to resume the Metoprolol I have been using for a few years to normalize my BP. After 2 days, my BP and heart rate returned to normal.

I'm feeling less tired but sleeping 12 hours a day. My appetite is better. My little incisions are healing. I'm not eager to do more, and I think I might appreciate a bit of supervised reconditioning so I can recalibrate my system.

Would a few people tell me about their cardiac rehab program? I'm told I'll get a call to get started but I'd like an overview of what it consists of.

This is my one criticism of my valve team. They are shit about giving information. No overview of the entire process, from diagnosis to done. No roadmap, no context for anything. It's been, "Okay, get x test." Then, "We'll call you to set up an appt." (For what? What's the goal? Can't you write anything down??)

I like my doctor and feel she was both capable and attentive to my concerns. The nurses in the hospital were good. It's the systems that are bad, and I see it all over across medical settings and in industry too, and it is so aggravating when it's the bank. But when it's your own heart on which you depend? When you've been poked and prodded and scanned and hooked up to wires and cut into? I want to wring someone's neck.

A road map to afterward would help. I've had minimally invasive treatment yet I still feel like I got worked over, I'm exhausted instead of feeling the same or better, the incisions in my groin hurt and my underwear scrapes on them so I've had to buy new, in a different style (which I'd have done ahead if warned). A bandage won't come off because it seeped blood a long time and the nurse had to keep applying pressure, but now the dried blood is sticking the dressing to me and I can't get it off without risking bleeding again. Long shower in the morning to soak it off, I guess.

These are all such small things but they add up and I just feel sick of the details: take this, don't take that, do this, don't do that, weigh yourself daily, take your pulse, WTF. I have little appetite just when I had thought it would be fun to indulge a little -- I earned it! Nothing tastes good, which is weird.

I've had a couple of lightheaded spells, my BP is up and so is my heart rate. They discontinued the Rx I'd been taking for high BP which is apparently what gave me kidney disease, so I'm not happy about this. I have many years of experience with the medical system and I know how the only person putting anything together was always me. So frankly, I don't trust the Rx discontinuation. My heart docs weren't around when I started that Rx. What's going to control my BP now?

Everybody has blinders on, looking at their own specialty, and not seeing the whole picture. I'm sick of trying to get them to listen and actually hear. My sister tells me it's very possible none of my providers sees the whole picture. As an example of this from her life, she told me how (many years ago now) after her C-section, the surgeon who had with his own hands removed the baby from her body, told her she needn't take the antibiotic he'd prescribed at precise intervals because he didn't want her to not get a full night's sleep. Hell-o-o!? Newborns don't sleep through the night! Her life was changed the day he took the baby out and a full night's sleep was no longer a possibility anyway! Talk about specializing, good lord.

So because of that phenomenon, I generally clue one doctor in about the other stuff going on. My TAVR doc took good care of my kidneys. But the surgeon I didn't end up needing had a misapprehension about what prompted the taking of a certain medicine I take. She had it wrong, and when I corrected her, she refuted my explanation, I held firm, and she looked at me as if she still thought the error was mine. That made me worry if in the middle of OHS she might blow off what a nurse or other doctor told her if it didn't comport with her own idea. People raved about her but I found that very bothersome and had I opted for OHS I'd have had to discuss it with her directly and maybe even ask for another surgeon if she didn't offer me something to explain or inspire my confidence in her everyday capacity to take in new information that was counter to her perceptions.

**And these are the people into whose hands we place our lives. I am not a fan.**

Even my TAVR doc, whom I like quite a bit, didn't anticipate how it would feel when the kitchen person refused to include a Caesar salad with my dinner because it added too many grams of fat. Whattt?? That's not what brought me here, I wanted to holler through the phone. Well I was calling from the heart recovery unit and I guess standing orders are the same for everyone, even though my arteries and vessels are nicely clear of plaque and I know this because of all the tests and scans and whatnot. So did my doctor know, but didn't think how in just trying to get a big enough salad, I was spoken bluntly to by someone who isn't qualified to use discretion, and lord knows a "heart healthy" diet is more important (though how healthy is lettuce past its prime? Or fake ice cream made from a chemistry set and so sweet it hurt my teeth?) than eating more green leafy salad. Yeah, with dressing. At home I eat butter, too, and my arteries are fine.

Okay, I know I'm in a foul mood, and I'm just bitching about minor details in the greater scheme of hey! I got a new heart valve and it's working and I'm not going to die in a year! But the accretion of multiple small indignities, being expected to tolerate being Done To without it having an effect, the withholding of basic information a reasonable person is better off having, on and on, and just not feeling right since the hospital, like my normal self, is REALLY GETTING ME DOWN.

I'm calling the valve team in the morning with a short list of questions, and to report on my status (BP up, heart rate up, incisions ouch, dizzy). Ugh I hate this. Sorry for the screed. No one needs to answer if they don't want to, and please, if you do, don't minimize my experience. Just say oh poor you and leave it at that.

I've been home 24 hours. My TAVR went just fine, and now when I go upstairs I am not breathless. My most keen feeling at first was relief: no stroke, no bleeding, not dead. Now, I'm tired. Like, bone-deep fatigue. My doc said, of course. We call it "minimally invasive" but the body doesn't experience it that way.

I've slept a lot today and I don't care that my discharge instructions say not to stay in bed too much. I'm not in bed now; I'm slouching in a chair.

So this is the filthy cat I'm not allowed to sleep with the night before my TAVR. She's not going to take it lightly, and I'll hear about it from her for days afterward.

Counting down. Today is Monday and my TAVR is Wednesday. 

A question I'd like to have an answer to is this: why start so early?

With the special bathing before bed and again in the morning (and sleeping in not my own room because I'm not supposed to let my cat sleep on the bed), plus leaving the house by 5:45 am, there's no way on earth I will be anything but exhausted on top of normal anxiety when I arrive at the hospital and put myself into their care. Surely someone has studied the effect of this on outcomes? 

I'm too tired to write all the details, but the preoperative appointment was aggravating, draining, and one day I'll write more. I'm satisfied with my doctor, but the system in which she is supposed to do her job is sorely lacking when it comes to almost every part of the preparation which has now been going on since April. I'm so tired of it and tired from it that now I just want the whole thing to be over. 

The 2-weeks-til-TAVR day went by without my noticing until evening. That was Wednesday. Today is Friday. Twelve days to go. I'm not eager for it, but I am tired of being tired and out of breath and not doing anything. So I could say, in 2 weeks I'll be home again!

In other news, the day I was feeling so lousy, I went with my daughter for a walk - a birding walk - at a wetlands area close by. It was evening, and the day had cooled, the terrain was flat, and we saw lots of birds. It felt good to be somewhere other than home, and so many birds!

Today I just don't feel like doing anything. I put in a load of laundry and want to sit down. I'm more grateful than ever there's a cure for this, and it's only 3 weeks away now, for me. I have so much to do before then, and my normal procrastination is more troublesome because I suddenly can do so much less than in the past. Oh well, if the house isn't clean, so be it. My sister is coming and she'll just have to deal. Not that she wouldn't, but I'm not really up to more than the bare minimum anymore.

I have a question about people traveling to distant places for surgery. What kind of insurance covers that? And, what do you do for support from family or friends while there? Take them with you? 

NEW date: August 14, 2023
Start time is 6:30 am with echocardiogram. Blood work the week before.

It's a month away and my sister wants to know if she can help me with new sheets and what I'm going to wear, LOL. I am not even thinking about that. Today I met with the lawyer to get my "mortality papers" finished up. I'm discussing getting folks to come take care of the outside/horse chores so my daughter doesn't have to while I'm in the hospital. And figuring out what she'll need for emotional support so she's free to be MY emotional support. 

I'm noticing that I seem to be past the hand-wringing and feel much more matter-of-fact about what's to come, which is something of a relief. It occurred to me today that I can look forward to feeling good enough to want to do things that I've quit doing due to low energy and the disinterest that prompts.

TAVR scheduled for August 12.

I procrastinated half a day in calling, because it felt like something final was happening. 

I've gotten settled regarding this vs. OHS. I did some more reading of specific studies that pertain to my situation. And I listened to a talk by the head of Cleveland Clinic that really underscored the nature of the decision. I concluded that no one else is in a better position to decide than I am. And I'm confident I understand sufficiently the variables and the relative merits of both.

So, with an acceptable level of nervousness, I made the decision and scheduled the procedure. Now I'm working out the calendar for my sister to come, and after that my daughter's friend, both from the bay area. This is primarily to support my daughter, who is my primary support. Part of me looks forward to the family and friends showing up aspect. My family is small and my friend group small, too. Being an introvert can make some things harder. 

I've been writing a lot; this is just a bit of it. More will show up here in due time.

No sleep so far all night. This used to happen every few months without explanation. Now it's at least weekly. I have a lot on my mind. The cat races around making a Rackers, but I think she's acting out my unrest. I'll be glad when this valve job is done and I can resume normal living. 

On Wed. I met with someone on the valve team to get my questions answered about TAVR at my age. The PA I spoke with was only somewhat reassuring about the possibility of valve-in-valve replacement if the new one fails, but it's not something anyone can judge with 100% certainty. There are so many variables. I find it all very nerve-wracking.

I've concluded that there isn't, in my case, a medically preferable way to replace the valve. I just wish they would say that so I don't have to sort it myself based on what they do and don't say. I'm disappointed that it's so hard to get plain talk. I have the feeling they are trying not to upset the patient, or themselves. Maybe the TAVR is okay for me because they don't expect me to live past its soundness. I doubt they would say that, and I'm kicking myself for not asking directly. But I certainly did, and do, talk in such terms, indicating I'm able to handle the subject.

Generally, I feel ill-equipped to make a decision that is apparently mine to make. But it's made, and while I'd expected to leave the appointment with a date, I realized I can't until I have consulted with family and friends who will interrupt their lives to come and provide support to my daughter. 

Last week I had an angiogram. It went remarkably well and I was less anxious than I'd anticipated. The bruising was unexpected, wow. And the compression bandage took my skin with it when I removed it - ow!

The good news is, my arteries and blood vessels are nicely clear of significant plaque, so it's being recommended I get my new valve via TAVR. The valve they intend to use is the Edwards Resilia, which is designed with anti calcification properties, so maybe it will outlast my need for it. 

I have some concerns about that, and other questions, so will meet with the doc tomorrow for that. I'm assuming I'll be given a date, then. Holy moley, it's going to happen. 

I'm so happy about the state of my clear arteries etc. I've been a careful eater since my mother fed us from our massive garden, but I've always eaten bacon, LOL. And butter is a daily pleasure. Guess I got away with something after all, ha!