Experiment

Since I’ve run out of doctors that are of any support to me, it seems time to stop being chronically ill, stop my medications and improve my diet. Starting with the heart medications first, quit them two days ago. Will stay on the diabetes med. Stay on aspirin to reduce cancer growth in my gut and continue the inhalers for COPD so I can function.

Besides the aspirin, there’s no cancer meds and the skin cancer is just there. My contact with whichever oncologist it is that is “watching” me (unclear who it is) seems to have stopped over a month ago when she couldn’t get in touch the guy who does the colonoscopies.

The cardiologist is not to be contacted.

My own doctor is a nice person but I feel very uncomfortable in the local clinic and can’t see her at the hospital because I won’t EVER go back there. So, in practical terms, my prescriptions are cut-off anyway.

The only person available is the lung specialist.

At some point, you have to protect yourself from indifferent care.

My History

On Friday we drove the 3 hours to Edmonton for a dermatological exam of my left temple where my family doctor (FD) had removed a large mole about a month ago. Biopsy came back as skin cancer and the idea was remove more tissue to be sure it hadn’t spread. My understanding was the procedure would be done that day and included an exam for other spots my FD has no time to look at.

Unfortunately, this dermatologist had a clinic to run, intended to operate later and was gracious enough to freeze a bump on the end of my nose that appeared suddenly a few weeks ago. And then he was gone. At the front desk I was told to await an appointment convenient to their schedule. AKA “you do a six hour drive for ten minutes of my time and then do it again for this simple operation which will be booked in the AM so next time will also include an overnight hotel stay.” No consideration for the patient? You bet.

Had my FD read my medical record, first she would have removed the mole a year ago when I asked and she said it was “nothing.” To be fair, she is my second doctor at this clinic, (there is only one clinic in this district). Though my former doctor works in the same clinic, there is no cross-talk between doctors so you have ONE doctor. If that doctor is on vacation (mine was gone over 3 months in a row last year so when my prescriptions ran out and I had to get renewals from my cardiologist) you in theory can have any of the other docs IF they have time but they will know nothing about you–or should I say LESS than my FD knows about me? .

So, not knowing I’d had moles removed, she wouldn’t know that there was a dermatologist who had already treated me and knew my record.

This morning I called yesterday’s dermatologist’s office and cancelled any further contact. Will book my other dermatologist, or maybe I’ll forget it.

Below is a letter from the heart surgeon who fixed me twice, to my cardiologist who is in very infrequent contact. Not sure why with a department full of them at the U of A hospital. Probably because I have only ONE cardiologist?

My idea here is to write down my medical history here because I KNOW medical people don’t read my history or don’t believe it. Also, someone close to me said today I didn’t have my “story right” so I want to get it down before I’m erased by everyone. This is what the reliable surgeon sad about me and I’ll fill in details in later posts.

April 21, 2016

RE: JOHNSON, Scott PHN# 

I reviewed the recent CT-Angiogram on Scott. Although there was very slight enlargement of the aortic root and aortic root pseudo-aneurysm since October 2014, the overall appearance to me does not look very bad. As you will recall he has an ultra-complex history- I originally operated on him back in 2008 to replace his aortic root. Prior to this he had congestive heart failure with severely reduced ventricular function with an ejection factor of l5%. We had also performed a four vessel coronary bypass. He did well with this for a period of time. However, he had an MI in 2010 and had a bi-iliac stent and internal iliac embolization in 2010. In April of 2014 he had a myocardial infarction again and was found to have severe aortic regurgitation and aneurysm of the ascending aorta. Prior to surgery he developed renal failure and a cardiac arrest and had been resuscitated. He had hepatic failure as well as renal failure. He has been a long-standing heavy smoker with a 50 pack year history and has emphysema and chronic obstructive lung disease as well as hypertension and peripheral vascular disease. He was also morbidly obese with a BIvfl exceeding 40 kg/m:. We re-operated and replaced his aortic root and he gradually got better from this.

In 20I1 he was diagnosed with stage 3 colon cancer and had a lower anterior resection followed by chemotherapy.

Obviously with all of the risk factors that he has, any of further surgical re-intervention would be highly risky. I would just recommend a repeat CT-Angiogram in I years’ time.

 

Positive

Saw the cardiologist and found it was great to learn that she’s current with my history. As said before over and over the communication aspects of receiving medical care are essentially absent here. No one seems to know anything. There’s no sense of there actually being a person with my name or history on the books except for those brief moments when I’m actually face to face with a doctor. In the case of my cardiologist, that’s two ten minute meetings in about a year and a half.

Felt very strange to talk to someone who knows my medical challenges.It isn’t that there haven’t been problems with the department she works in but it’s amazing how someone “knowing” you matters. The cancer people have made it clear they aren’t interested in anything about me. I do two more blood tests for them and I’m gone.

Only glitch with the cardiology people is an appointment I was supposed to have right after chemo was done. I had been booked for heart surgery before chemo. Then it was decided to do it after I was done with chemo in the spring and apparently the surgeon, like everyone else, lost my file so I need to wait for more months until I find out about surgery. The deal is, if there is no word by April we call the cardiologist and she reminds the surgeon.

As for my family doctor. She’s still on holiday and I’ll run out of the medications she needs to prescribe in a week. Four days without meds and my heart goes erratic and I start passing out. So I arranged with the cardiologist to get refills and I can skip the family doctor for three months. Anyway, she’s already over-booked for whenever she does get back so I couldn’t see her until mid-February.

 

There are no priorities for patients with chronic illness at the local clinic. The patient is considered, at best, a source of billable hours and otherwise treated like a stranger.

In fact, the whole medical system for rural people is an uncoordinated mess. There is a group now collecting stories like mine to see what can be done. Have sent in some material to them.

 

 

Something New

The end of this week I have an appointment with the cardiologist. I’m on some kind of scheduled check-in list though that changes based on reports sent in by my doctor which changes based on my doctor being in town. None of this really works but apparently the doctors haven’t been told and they still see the system as just swell. And anyway, it’s the way it is and I’ve learned to “manage” in a medical system unaware of its mistakes and delusional beliefs.

I say “manage” in quotations because the truth is there’s no particular intentional system in play to remain alive–it’s just a matter of not dying long enough to be noticed by someone who knows what to do about it. So far, it has worked out. There’s probably an argument for expecting more from a hugely expensive and exotic health care system but dead / not dead is what’s available here.

Funny, I asked a nurse calling me to request I have my 3 month blood test for cancer markers her call was considered “care” and she said “yes” plus it was proof of their “watching over” me. Suppose that is a semi-accurate indication of care? They don’t call the patient if no markers are found so I asked how I would be able to distinguish between missing a phone call and not getting a phone call? It seems this is something that doesn’t happen. Did find out later that blood tests done at my hospital and faxed to their lab 300 KM away is known in the industry as an “unattended clinic” allowing the request by phone or mail to be declared “patient contact” even though I saw no one. Magic? Yes.

Have been reading about Complex Project Management searching for a clue to the notion that my doctors have that they are “providers of health care”. Are they crazy, or is it me? (That’s the first condition that needs to be resolved in the study of organizational weirdness and it does MATTER. So I’ll have to get back to you on this).

Be here, maybe

Edited from my original because I’m angrier today.

This is a reply I was going to leave at the smallc blog by Rebecca Matos but I am in a pissy mood and don’t want it to seem like I’m mad at her. You will have to read her blog for this to make sense. Don’t be lazy, do it!

The gist of my message is that though specialists are hired for their ability to focus and bring expert advice in order to save the patient’s life, I think they should extend some effort to know something of the patient. If they want live in a sterile glass cubicle and shoot diagnostics out their ass all day, then fine. But I would propose that as a witness to some pretty catastrophic health events they need to be accompanied by someone who notes the human dimension. My doctors and specialists hold my life in their hands and don’t know anything about me. In fact they go beyond non-recording to fictionalizing aspects of my personality when in extreme stress, and then claiming privilege by their ranking in the system.

So not only do they write the public account of my illness, they get it wrong. So to be clear… Well I’m upset…

To an extent I agree that the oncologist’s job is primarily to keep us alive. In my particular case, the answers received were from an oncologist who had no connection to my treatments and was obviously reading back from a list of standard procedures like the mechanics do at when you go in for warranty work. The only indication the answering oncologist was talking about me was a mention of contact with my cardiologist on the concern over how the aneurysm in my heart would react to the chemo. A question never answered until after the chemo was done and after 8 months of feeling like my heart was failing. That lack of feedback seems to be a hallmark of treatment here. It’s part of the institutional structure of disrespect for patients and definitely made way worse by my living in a small rural town.

It starts with there being nobody to fill the role of GP here. If you have a chronic health problem, well too bad, there is no continuity at all. My doctor sees me once every 3 months to renew my prescriptions, take my blood pressure and very rarely pass messages from the specialists. She’s a nice person but has lots of patients to see so 10 minutes for an appointment is the max. I don’t see her when I’m ill because it takes weeks for an appointment (if she’s even in town), so I go to emergency where, they seem to know me better but still I’m an incident in the shift log, here and then gone.

My cardiologist is potentially available but since she missed my second heart surgery she seems to be unaware of my case and it’s almost certain I’ll never see her again. Anyway she disappeared after my first heart surgery and with no continuity at her end or mine, my first implanted valve went un-monitored, came loose and tore the top of my heart to hell.

Then we have the original oncologist assigned to my case quitting over something I said and it isn’t my business to know. Yeah, I might have said something in those weeks after my first chemo. Felt like my heart had blown up again and I lost almost 35 pounds in 3 weeks and couldn’t get anyone to understand–though I DID get a reputation as a rude, verging on abusive person and had “services” and contact cut even more. It took months to find out oncologist #1 had been replaced and I have no real connection to her. Saw her once during chemo where I took someone to speak for me and my concerns were erased by small talk and the obvious message that fuck all was going to transpire.

Not sure, but it seems to be bad form to do everything possible to reduce a person to an invisibility. Who are we that don’t have stories? Why keep us alive?

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.

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.

Progress

Managed to get in touch with the Alberta Health “Patient Advocate” last week. She even phoned and spent a half hour listening to my concerns. If you add up the time spent talking to a doctor over 2 open-heart surgeries, cancer surgery, an abdominal aortic stent operation and tumor removal, the total speaking time would be about an hour. Does this mean anything? Well first time someone on a patient contact hasn’t hung up me in years. I also have one place that accepts email messages and replies. No doctors I try and contact take email messages, none reply to phone calls, and even registered postal letters don’t return the receipt tab.

The advocate was quite pleasant and said she will “report my concerns to the Ministry of Health” but can’t reveal when, where or who so I think another effort is into the garbage. I found it completely strange that the medical system is so devoid of human contact. If I was that unresponsive I’d be declared dead–but I did die last time and this all zombie dreamin’?

Next step is to volunteer for the Lakeland Communities Health Advisory Council. I sent a query email about membership and will attend the next meeting reply or not. The district they cover is quite large, so it’s long drive to the meeting, but I think it will be worth it. At some point a person needs to break the isolation. The medical system itself is hard to access and even though my doctor’s clinic and the hospital are both a 5 minute walk from my house, neither provides any useful services. In fact, the County Home-Care Nurses are the one’s who keep me alive and actually know about medical stuff. So I’ll see what is up at the advisory council–I suspect it’s more useful than it sounds.

Some of my decisions to become more active come from reading “The Untethered Soul, the journey beyond yourself” by Michael A. Singer. The book is a kind of essay on how your mind works mixed with practical tips on holding your spirit together. Though it may seem obvious to seek medical help from medical systems, I’ve found here that the medical people are too detached from their JOB to actually provide help. They themselves know this but can’t admit it.