I was gone all day yesterday. Not really invisible, but invisible on the Internet.
By the time we got home in the evening, it was late. Too late to start going through email for sure. So most of my email got dumped because if I don’t get to it on the day it arrives, the odds are that I will never get to it at all.
I’m never going to get through today’s emails either. I’m totally overwhelmed and I apologize. I hope I might catch up eventually. I keep trying, but somehow, I never quite make it.
I went to the cardiologist. It’s an hour’s drive to get there … a little more with traffic and there was more than enough traffic. Then there was the test to make sure my pacemaker is working, the echocardiogram to make sure the replacement valves are doing their job and the rest of my heart is pumping nicely away.
On the way to Chestnut Hill
Everything works. I suggested maybe it was time to reduce the amount of medication I’m taking and we did that. I’ll have to check in a couple of days and see how it’s going. I also should get in touch with the surgeon and ask about fixing my broken sternum.
The problem is, there’s no way to fix it without cutting me open. For what I think are obvious reasons, I don’t feel like doing that. Meanwhile, it’s pretty loose. It pops and crunches all the time these days. It takes all the fun out of exercise. Who knew my sternum was attached all those other parts of my body?
Doctors are so specialized, they don’t realize how much of you they miss. If you go to the hip guy, he won’t even look at your spine, even though the problems are actually one thing. Everything in medicine is so specific to a single little piece of you that the whole “you” gets lost. The cartilage in my sternum never healed and every other action I take makes it bump and grind.
No part of us is entirely on its own.
Sometimes, I wonder if all of my problems are not one problem and the reason no one can figure them out is because no one see the whole person with all those interlocking pieces. My primary guy gets it, but to get anything worked out, there are specialists and they only work on specific body parts. I got four calls this morning asking about setting me up for an MRI of my head except they can’t do that because I have a pacemaker. I can’t even be in the same room as all that magnetic equipment. It would kill me, suck the pacemaker right out of my chest. That is an image from which i may never recover.
Later this week, there’s the psycho-pharmacologist and next week there’s the oncologist and probably more tests because I didn’t do them last year, but sooner or later, you can run but you can’t hide.
Almost home
I will be invisible again next week and the week after and probably again after that and finally, I’ll be done with all this stuff and hopefully, no one is going to tell me that I urgently need yet one more surgery because I’m seriously anti-surgery at this point. Short of death, I’m not going there again.
Just around the corner – back in the icy hills of home
The best news? I will never be an unidentified Jane Doe on someone’s slab. At least four different pieces of me have embedded code. My body parts have code numbers. That’s pretty good news, isn’t it?
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I don’t know — my current hip doc looked at my back x-ray. BUT when the first hip went south, my GP didn’t order hip X-rays at all. It’s a big mystery to me. I have a suspicion that it’s related to what they think the insurance will pay THEM for. 😀
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You may be right, but regardless, it’s a dumbass way to deal with the human body. I KNOW there’s nothing wrong with my hips. The pain is entirely from the spine, but apparently the location at the base – L -3-4-5 and S-1 all hit me in the hips. The back gets very sore and stiff, but the hips really hurt to the point where I can barely touch them or the muscles near them. It gets very frustrating dealing with doctors who only look at a single piece of you as if it, alone, is the culprit. And that there’s no transfer of data between hospitals — even when the hospitals are literally standing next to each other in what we call “hospital city” in Brookline — makes it downright dangerous. I know I was supposed to get a CAT scan of my head, but for some reason, they keep trying to make it an MRI. An MRI could literally suck the pacemaker right out of my chest like a scene from some particularly gory horror movie.
I at least know I can’t get anywhere near an MRI, but how many patients aren’t as aware of the risks as I am?
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I’ve learned in the last month that (besides the fact that the joint in my hip is messed up) there are a lot of other things that can go wrong that have nothing to do with bones. Every time I go to physical therapy I learn something more and I bring it home and add it to the list of things I can do to help my hip. It’s all helped. I had no idea. Yesterday I learned more. I once believed physical therapy was some kind of placebo, but if it’s targeted correctly, it’s more than that by far. I respect my doc even more for prescribing it and I respect the two people who’ve been helping me at PT for paying attention both to my doc and to me.
Communication between the people taking care of us is really important. I think — as do you — when that doesn’t happen, it’s a problem.
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I have yet to find a good PT person around here. I know there ARE good ones, but we don’t seem to have any. We also don’t have many places that do PT at all. If we had a Y around here with a pool, there’s a lot I could do in the water, but we only have one indoor public pool –and it is permanently log-jammed by local schools.
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The problem with being human these days is that while we seem to be just one organism we contain so many independent, yet vitally connected, systems within each one of us. What affects one system can and must affect, to varying degrees, all other parts of each other system. Sadly modern medical specialists (with few exceptions) have either forgotten this, were never taught this, or refuse to recognise it and stick to what they know ‘best’. 😦
I’m currently being treated/checked up on by six different specialists for 3 major conditions, all of which i believe share a common and as yet unidentified or unsearched for common root. But it keeps them employed to just stick to what they know best while i maintain the basic minimum health conditions with their ‘help’.
What the health system really needs is a specialist who specialises in generalised (holistic) health care! 😉
Someone who can look at what all the others are doing to/for you and figuring out how best to maximise your health with a minimum of operations.
But how to make a profit from it??
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In this country, it really IS all about who pays who for what, so if there was a holistic doctor, he or she would have to work independently and good luck with getting hooked into some insurance scheme. We really do have a terrible health system. It isn’t really a system at all. We have terrific technology and training, but NO organization.
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That was quite a day. Things would sure be easier if our bodies were meant to live this long, and if the medical professionals didn’t want to treat absolutely everything with prescription meds and surgery. So, in steps the patient who has to advocate for herself by weighing options before agreeing to anything. Best wishes for a good medical plan that works for you. 🙂
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Right now, my best plan is to get the tests, but say no to anyone with a scalpel. It’s not that I don’t trust doctors, but I really don’t trust doctors. It’s not personal.
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I always remember in the back of my head that it is the ‘practice’ of medicine. 🙂
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If they keep doing it long enough, they will get good at it, or so I hear.
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Our lives seem to revolve around medical follow-up visits these days too. I’m with you on the anti-surgery bandwagon. Good to hear that this visit went well. Take good care of you… ❤
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One down, half a dozen to go! I hear that spring is just around the corner. Oh, wait … it was yesterday.
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LOL
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Keep on a chugging along… Glad I have had few surgeries, but disgusted that because of the afib that started when my daughter went into a nursing home with her MS 8 plus years ago, because of poor circulation they will not (can not because of risk of infection.) fix my knees, etc….
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No one will even try to fix my back because it’s such a mess, the odds are they would make it worse rather than better. Sometimes, chugging along is as good as it gets. Also — if things don’t heal, it can get very messy, so you are probably better off. Because those infections will kill you. All you knees will do is make you miserable. That doesn’t sound like a really terrific choice, come to think of it. I suppose I count myself lucky to be alive at all!
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I’m a bit surprised (a TINY bit, we’re talking about physicians here), that the bone guy or whomever was checking your sternum and told you it was broken, didn’t suggest some kind of support device, like a back brace, but designed for that wonky bit of bone in our chests, to stop it wiggling around and popping like that. Maybe there aren’t such things. But (and my anatomy is rusty these days…too long retired I guess), that wonky bit of cartilage is support for things like your ribs, which if annoyed tend to snap and poke one in vital organs like lungs; and for your overall frame in general…including your spine. It’s no doubt a lot less urgent than I might think it is, especially if they’re letting you toddle around and aren’t insisting on surgery … my best wishes. And thank goodness, at least this time they got your appointment right…. 😉
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Without getting too technical, your ribs are attached to your spine rather than your sternum. Your sternum’s basic function is to protect your heart, but has to remain mobile enough to let your lungs expand and contract. The problem with mine is that the cartilage never came back. At my age, cartilage doesn’t restore well. In my case, it never really did, even when I was a lot younger.
Nothing can make a bone heal if it doesn’t want to heal. There’s no medication, no exercise, nothing. The ONLY thing they can do for me it take me apart and tie me back together more tightly which is major surgery. I’ve had a lot of major surgery and I’m reluctant to do more. I may not have a choice in the end, but until I have no choice, I’m not doing it.
I have a friend who had a broken rib that didn’t heal for almost 7 years until one day, it did. I also asked about some kind of vest or something, but anything that would keep the chest closed would also make it hard to breathe and probably make me miserable too.
This is one of those things they can’t fix. It may eventually fix itself — or not. It should have repaired itself in the first six months after surgery, but every time it seemed close to healing, I’d do something and I’d feel it snap apart. The bones ARE healed, but there’s no cartilage to protect them.
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Even in a small area like one’s face, it’s all connected. In the last 7 months, I’ve had cataract surgery on both eyes, laser enhancement on one eye, basal cell cancer on one oyelid, and another on my nose with a skin graft. All a month or so apart! And the other day I was in the surgeon’s office about an enhancement on the other eye — during the course of conversation, I told him that I had felt like my face had been healing for so long that I was about at the point of telling everyone to stay away from my face. Fortunately, he heard me, backed off, and opened the door to take care of it later. My best to you for the next few weeks — hopefully you’ll be fine!
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I was like you for a long time. I had so many surgeries on my abdomen that it looks like all the rail lines coming together in the yard.
I agree. Heal up for a while. I had both my eyes done about a month apart, so I had barely finished one huge black eye before I got another. I took to wearing sunglasses everywhere. Garry is having a lot of trouble dealing with the cochlear implant. He really doesn’t want to do it, even though he would like to hear. I think if it was 10 years ago, he’d be on it … but now, at 76, it seems like a lot of surgery and therapy.
I delayed it until May. He needs time to think and sort it out. Decide what he really wants to do.
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We live in a specialist world. The only common denominator I have at the moment is my physio therapist, she is an angel and examines all my body parts. Today she spent time on my arm to see if she could find out why my right hand is getting less versatile. She is the only one that has bothered. All the docs say it is typical MS and the problem is solved. It must be unpleasant have so many body parts with problems and I hope you can manage OK. I cannot say I hope you get well soon, but it cross my numb fingers that there will be an improvement somewhere.
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I got completely baffled when the hip doctor wouldn’t even LOOK at my spine x-rays. The problems are connected and having a doctor who will ONLY look at this piece and not the connected pieces is ridiculous.
I’m not expecting any kind of miracles, either. If things don’t get worse, I figure I’m doing well. Getting all that good news from the heart guy was a relief. Whatever else is wrong, the pump is pumping. And there is NO way I’m going back for another surgery so they can stitch me up tighter unless it gets dangerously loose. I’m not sure what that would be, frankly. As far as I’m concerned, anything that doesn’t required chest surgery will be okay with me.
I hope we both get some kind of remittance … and if not that, at least no worse. Sometimes, staying the same is as good as it gets. I also think warmer weather will probably help. This damp cold is not improving anything.
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I agree with you, Marilyn… the local doc sees the patient and all the bits that hang together, no matter how loosely. The specialists see only one problem and never seem to take a more holistic approach that allows them to see where the dots might join up to make a different picture.
I’m currently waiting for possible surgery to fix a bone problem that may yet turn out to be caused by another problem altogether that will probably end up with having my throat cut. While I think I prefer the bone surgery, given a choice, I doubt if that would help ther rest of it much 😉
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Isn’t that incredibly frustrating? We KNOW our problems are part of a bigger issue so surely doctors know it too … don’t they? I finally made the hip doctor take an x-ray of my back and she said “Oh. Yes, the hip pain really is caused by your spine.”
Duh.
There was a time when you went to a bone guy and he looked at ALL your bones, not just the ones in your hand or your elbow. The one who looked at my hand completely refused to look at my wrist. They are connected. They really are. There’s a song about it. Eventually, we will have doctors that only look at ONE bone. They will be tibia or femur specialists. Or just your right index finger — no hand need apply.
Meanwhile, they asked me how long I’ve had a pacemaker. I said “Four years.” They said “Oh.” If I let them, they would have killed me. And then said “Oops.”
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Let’s just say I will be stalling the bone surgeons until the other guys have given me some answers…if they ever get around to it.
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It is frustrating and exhausting. I have a league of specialists and they NEVER EVER TALK TO EACH OTHER. This is why it’s such a mystery to other doctors that I have a pacemaker. Despite all this computerization, the various doctors and hospitals do NOT share information. I had my heart surgery done at Beth Israel, all my gut surgery at Brigham and Women’s, my spine done in a dinky hospital in New York that no one has heard of … and then a bunch done at Newton-Wellesley … and the cancer stuff done at yet another Boston hospital, the name of which escapes me at the moment. NONE of them share data. And they charge a fortune to even make copies of the information for you.
I have a crate of medical data in the trunk of my car. It probably weighs 10 pounds and is about 1500 pages. And that’s only through 2009. It doesn’t cover the cancer or heart surgeries. You’d think after all this they could at least share medical information between institutions, but they don’t even have the same formats for documents. If I wasn’t alert, they would kill me for sure.
Short of having something that is going to kill me quickly, I’m not letting anyone with a scalpel anywhere near me.
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All our NHS records are computerised and freely available to doctors… but the system seems set up to summarise a lifetime on a page. Even stuff as basic as what essential bits they’ve whipped out or sliced and diced twenty years ago doesn’t show… so it is no better unless they take the time to look, and time is one thing they do not have.
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The MRI lady was a bit put off when I said I’d had a pacemaker for four years … in fact, this is the anniversary of it or it will be in a week. I KNOW my doctor has entered the information into the records but no one reads the records. If WE aren’t on the ball, they will kill us. Entirely by accident. Just failure to check. At this point in time, it’s bizarre that they don’t know such major information about our health.
I have two replaced valves, two replaced breasts, a pacemaker, a myolectomy and a bypass. Most of them don’t even notice I’ve lost both breasts to cancer. Or had my stomach removed twice. And NO ONE even remembers the spinal fusion or the burst septic ovary or the replaced toes. And some of this stuff is lethal if they use the wrong procedures. God help us if we aren’t conscious enough to tell our stories. And NOW they want an MRI of my head and if they did that, they would actually tear the pacemaker out of my chest … not a pleasant thought . I didn’t know for sure until yesterday that I had TWO replaced valves either. No one saw fit to mention it. And the spine surgery was in 1967, so I don’t even think there ARE any records remaining — or the pin in my tibia. I am, as my doctor points out, complicated.
And yet I’m still here and more or less functional. Tom (also one of our writers) points out that I’m a tough old bird. We are, you know. If we weren’t tough, we’d be gone.
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It beggars belief how the incredible information systems we have in place can be so uninformed and uninformative. We manage to talk to each other across the world, but two departments in the same hospital can’t maage to access one shared record…
You are right, we need to be tough to survive…and have a sense of humour too 😉
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Many long day journeys into night.
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