Tag Archives: distance

Doctor’s Holiday Season

Appears I’m no longer to be considered a participant in my health care. No word from Patient Concerns and as expected the doctor tasked with answering my question on lack of communication has chosen to not talk to me at all. This has to be the strangest medical service on the planet here in Alberta. It’s so strange, the staff denies doing they are doing what they are doing when they are doing it. The nothingness of this state of being is leading to a numbness and disassociation that makes me feel unreal–not here.

Have an appointment with the family doctor Monday the 9th. Apparently there are test results and messages relating to my status as a human to be gone over. Since I’m not told in advance what any of this is about, I don’t think I’ll even guess any more. And does it matter? The 3 months on either side of Christmas are when doctors and specialists disappear. So not only do people who might know my history disappear. But since they really don’t know my history because they never talk to me, just issue orders, only they do hold the key to my files and when they go, the files are locked. Anyway, maybe it doesn’t matter if I have no files as no one reads them? Guess I’ll see.

Heard an interesting story about parents of very sick children who work out treatment chart for their kids to give to emergency room staff when they arrive at Emergency. No one touches the child until they’ve read the chart. It eliminates some of the frustration of explaining over and over what the child needs. Think I’ll do one up myself. My wife has spent many horrible hours being ignored by jackass doctors who WON’T look at my file.

Another change

This changing my mind thing is a continuing feature of this blog (and my life) so if you’re tired of it stop here.

To avoid being treated like a useless nothing it came to me that I should detach myself as much as possible from the medical system and step one was to embark on an unscientific study of what happens when I reduce my meds to prolong the periods of time between trips to the doctor to get my prescriptions filled. I know this sounds stupid but going to the doctor has become a declaration of total failure of myself as a person. What other type of person would submit themselves to the care of  people who have no use for who you are–and in fact insist you admit your worthlessness and inability to understand the world to them personally and in a couple of cases have blandly pointed out that if I don’t like it, it’s no worry of theirs if I just walk away.

It would be paranoid to say directly that since there is only ONE health-care provider in the whole province of Alberta that offering walking away as an alternative is to say I’m welcome to go and die somewhere. That, well, does seem a bit extreme–even if it does feel like the truth. So lets just say these people are so tired of sickness and the way it twists a person around that they are no longer willing to “put up with it” and if you want help you’ll get the same treatment a clerk at a hardware store would give to an unreasonable customer. And accept it because that’s all there is.

Since I believe I shouldn’t have to debase myself in order to stay alive, my strategy was to detach but the prescription thing needs to resume. My heart, in spite being scar tissue, implanted valves and surgical mesh is still vulnerable to stopping and starting at will without meds. Strangely, headaches, ringing ears, dizziness and even arthritis in my hands and joints came back almost immediately. All of this is normal, but much enhanced by lack of medication.

So, always full of plans and schemes, the next play is to stay on the meds, endure the useless check-ups once every 3 months and pick-up my prescription renewals. The 3 month cycle is mandated by the insurance company that covers my medication costs and not based on some sort of care plan. IF I ever bother to bring up a problem there’s no time to investigate and if there are messages from my specialists that haven’t been lost, I always get them months too late to act on anyway. This streamlined scheduling has advantages in that I can substantially reduce the physical pain at a small investment of time while enduring the minimal amount of disrespect the system seems unable to resist delivering.

What amazes me is given the high level of training over a long period of time going into medical education, that being a caring person isn’t considered a necessary prerequisite to medical school. Sure, it’s a shame to turn away all that tuition money by rejecting someone who’s only limitation is lack of empathy–it’s a lot of money I hear. And maybe that’s the point? Medicine is just a business in the unique position of having customers who must put up with whatever service level medicine feels like offering? Add to this the pressures of work overload that medicine appears to value as a proof of expertise more important than care and it’s not surprising that medicine fails to support human needs.

The complications of not playing their way

So I’m leaving my current family doctor–that’s what the specialists call the person you signed up with to be “your” doctor. Usually local, provides continuity of care, knows your case, your history and presumably advocates for you. This person is the go-between with other medical people and manager of your health care needs. In addition, this person is needed by distant specialists to be their representative by receiving and acting on their directives. In also if tests are needed this person will perform them or order them done, specify the needed procedure and process the paperwork back to the specialists in a timely manner. That’s a lot of things to do for one person but it’s a controlling system that that values its self-image over the needs of the customer (no sense pretending we are patients or even of interest).

From the list, my family doctor renews my prescriptions and is too busy for the rest–even if she knew there was a rest in my case.

So after confirming nothing had been about my yearly cancer exam and simultaneously being told I “worry too much” by fd’s receptionist, I have quit.

Plan A was to call the cardiologist and oncologist to please stop sending requests for action like tests or appointments to my fd and send them directly to me instead. Neither of them can do this. System rules are ALL contact with the patient is done through their fd–no exceptions. Except, when between fds and as a temporary measure I can call the specialist when I guess I probably, might or might not feel an appointment may have been booked without my knowing it. Of course I can’t book any appointments myself, issue prescriptions or be notified of anything already because “your family doctor will do it.” Or not.

So there it is, no fd, no more medical. In a way this doesn’t matter as my cardiologist is totally absent from my life, always has been. My abdominal aneurysm surgeon disappeared before my first check-up with him to confirm the stent was still in place. Skin cancer guy took samples, reported they were malignant and then evaporated. My oncologist says I’m on “close surveillance” after chemo but I can’t be watched without an fd, so that’s a bust.

Next step is to do the late yearly exam and then I’m done. Have already started tapering on my medications because there’s no way to access them without the fd. Have about 2 months supply left that I can stretch out over 6 months. The withdrawal on a couple of them is rough but they are all heart meds and my heart is already half scar tissue, half surgical mesh and the existing aneurysm is stable. So as my pressure goes up, I’ll be able to adapt–or not, who knows?

No doctors please

To late in the day to describe what happened beyond confirmation that stepping away from all but absolutely necessary contact with the medical system was a good decision. As usual, my doctor failed to do anything but the minimum with a letter sent from my oncologist. Letter was received and forwarded on to essentially the wrong place June 17. As I have mentioned, it was me who tracked the letter down after the doc’s receptionist didn’t have a confirmed appointment. And it was me who MADE the appointment for the colonoscopy I was ordered to have no later than mid-June to confirm I’m cancer free. Luckily it will be at the end of September which is quick for here.

Went to the clinic today to confirm my doctor knew of the appointment and she didn’t. While standing there (I wanted to see this) the receptionist called to make the appointment and then took credit for my efforts by announcing the date like she had done it all. Then she called home later to reassure me they are in control of things and ended with she thinks I worry too much.

So, the end of doctors for me. The only service she provides is renewing my prescriptions once every three months, and even there I was supposed to have a review before chemo started last September and another this June after chemo. So since this is the “best doctor in town” it will be no doctor at all.

Since the rule in Alberta is a patient MUST have a family doctor for the rest of the system to communicate with it may be I’m off the grid completely. So be it. This all started with me taking myself into the heart clinic in 2008 and being admitted as a “Walk-In” because my doctor at the time didn’t even know there was a letter on her file saying I urgently needed open heart surgery. And even after three more surgeries I’m still listed as a walk-in to this day. NO doctor has ever helped me, so goodbye doctors.

Same Old stuff

My family doctor is away for six weeks. This happens 3 or so times a year without any warning. Because the clinic I use has no policy for continued care of chronic patients I now have no access to files and updates from other doctors as their messages go into my doctor’s message file and aren’t monitored or passed on in any way.

By accident my lung doctor mentioned he had seen a message from the oncologist who WILL NOT talk to me about a CT scan sent to him (I see him about every 18 months) because it images my lungs really well. That’s good news but there’s also something about my cancer’s “progress” (not a nice word) that goes unexplained plus some news of deterioration on the left side of my heart.

So hopefully the appointment next week at the local clinic with a different doctor will get me access to my health news. (Ha!)

Introduction to my introduction

This a long story and you may find it boring or too self-involved but I need to post it to clear some space for being here at POT Cert14

My second chemo cycle was delayed for a week as I mentioned because it zapps my platelet count which I need at least normal to keep blood clotting around the incision in my heart that leaks that needs fixing as soon and the cancer is “gone.”

This cycle is already different than the first. I’m very energetic and clumsy here at 10 hours after the IV infusion and starting 46 hour chemo pump infusion. Other side effects: my saliva glands go nuts when I first eat something; left eye fogs over then clears and hurts; angina in sharp short bursts (I know these); very sensitive to cold; fingers and feel tingle and hurt, but typing with chop sticks is harder than trying to ignore the pain–experience tells me to work through the pain and not focus on the misery. That tactic is dangerous, works well, and life is dangerous anyway.

Was thinking not to make this blog available to POT Cert because I don’t want sympathy or to be a distraction. So I’ll give one example of why today relates to online learning:

I live in a rural small town in N.E. Alberta where medical services for medical disasters like me and almost non-existent. My specialists Vascular, Heart, Lungs and now cancer all operate out of Edmonton 3 hours one-way south of here. By being distant and tied to the phone only (specialists don’t do email) I’ve already lost contact with the vascular guy; my cardiologist’s first notice to me sent by email (ironically) to my local doctor was “lost” after only one attempt by the clinic receptionist and the clinic’s refusal to search for it resulting in a serious setback including a heart attack and a heroic patch-up by a surgeon when I did finally get into the cardiac ward almost 2 months later.

Because I presented as a “walk-in” there were no services booked for my recovery and so I missed psychological counselling, physiotherapy and follow up appointments–I was alive but invisible. When I called help-lines (even as a “priority patient”) I was diverted to receptionists who told me quite firmly that “no news was good news.”

This cheerful mantra became a problem after not being booked for regular follow ups and in year 4 my patch-up tore loose and my heart began swallowing my implanted aortic valve patch-up. Not able to get an appointment with my regular doctor for 5 weeks after I’d been sick for a few months I endured the time being miss-diagnosed by 5 doctors and one surgeon at the local “hospital.”

Seeing my doctor–my wife dragging me into her office–it was discovered I was in last stage major organ failure and got to go for a ride on the air ambulance. First to isolation at one hospital to rid me of c-difficile caught from the local surgeon. Then during the tests for c-diff I stopped breathing and ended up brought back by resuscitation and going into valve implant #2 surgery really smashed up and with a record of an unknown period of no oxygen to my brain. And also lost in what is known as Intensive Care Psychosis that lasted through surgery plus 8 and days after and included being tied to the bed and saying regretful things to my Daughters and Wife.

This time my cardiologist, who works a few offices down from ICU, was never told I came in because there was no formal check-in and worse than walking-in is flying-in. It took her months to contact me and by then, again, all services but the Home care Nurse had expired. I still cannot call my Cardiologist without getting the “no news” reply and no call back.

So now 2 years later scans for cancer in my colon showed leakage and a “stable aneurism” at the implant site at my heart. I’ve had one call from the cardiologist about the risk of cancer surgery that happened anyway. The only reason she called me is my oncologist for her imperial approval to give me heart threatening chemo. Then her most recent letter to my oncologist (email again) in reply got “Misplaced” (specialists don’t “lose” things–receptionists do) saying I could have chemo but it was risky, never got to the oncologist (they are both in the same university hospital building). It did go to my family doctor but she’s on holidays without backup and I had to stand at the counter and not leave until one of the doctors read it to me.

Short version is a system that values only itself and some phony issues of “privacy” and “integrity” can trash years spent on education (doctors unable to do diagnostics a one-eyed newt wouldn’t miss).

Smart as you are, online can cause you to miss cues you are a pro at in class. If you work at a school that has policies for “handling” students like objects. Find another place to work. Online doesn’t need to be “distant”, don’t let it.

Tomorrow I’ll write about what made today very, very different in my medical adventures.

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