Jan 31, 2018

Rant #6 - Lets Talk About Primary Care

Originally, I was so pleased to find out that our Medical Clinic (the Haig Clinic) was part of the Primary Care Network here in Southern Alberta.
I never thought much more about it until we became thoroughly entrenched in the Medical System.
My first mistake was that I thought a Primary Care System implied that each part of the system has a path, is integrated into, and responsible to the whole.
HUH – was I wrong!!
It seems that the key objective of the Primary Care Network is to ensure Albertans have a place to enter the System – a front door – a family doctor . . . if you please. Theoretically, this is good . . . BUT . . . the doctors at most local clinics are not taking new patients.
Then the doctor refers . . . and refers . . . and refers. 
Communication and follow-up seem to be optional.
Any referral MUST come from the doctor; the staff sets up the appointment with the receiving service and tells the patient when their appointment is.
What would happen if we tried to introduce the patient into this Primary Care Team?
The biggest element missing from the system seems to be the patient. It seems that the more complex the situation is - the less the patient is involved in the process: the process goes on around the patient.
How can they call it a Primary Care system if one part of the system doesn’t know what the another piece of the system is doing – has done – or plans to do?

Oct 22, 2017

Rant #5 – Oops is the scariest word in the English Language: The Fear/Panic Syndrome

July – October (2017)
Now what?
The pain in his foot was so bad, he couldn’t put any weight on it . . . Fred thought there must be a broken bone or bones in his foot.
I can’t deal with over 200 pounds of pained weight, so again, after talking to Healthlink (telephone health service) it was a call to 911 and the EMS with a stretcher to take him.
Again a long stay in Emergency and a final diagnosis of gout . . . but the Emergency doctor said he was concerned about prescribing the usual medications for gout because of Fred's kidneys so he tried a very a minimal dose . . . it didn’t work.
A trip to the Family doctor resulted in a steroid regime.
Cricky . . . what next?!
What Next was another visit to the hospital with a significant amount of blood in his urine. This time he was admitted. After more tests that revealed nothing, they thought maybe it was still a leftover from the TURP or irritation from the wrong catheter when Fred had the urology dynamic test . . . another one of those ‘scare-the-hell-out-of-you’ experiences. 
Fred monitored the blood-in-the-urine thing and realized what an issue was and what was not.
Now the gout (the pain and the difficulty walking) and the failing kidneys became the centre of our concerns. The resurgence of the gout pain was continual and once more the Family Doctor prescribed the prednisone.
October 8th, 2017 – the latest visit to Emergency
An extended (24 hour) stay in Emergency undergoing extensive testing to identify why he was experiencing a muscle spasm in his lower back.
This was the first time we have actually experienced one of the Hospitalist Physicians[1] (and I am still reserving my opinion about their role in the system). We were impressed with the gal who came in to see Fred. (We both commented that she was very different than any doctor we had encountered up to then on our medical misadventure journey: she was very hyper; was not wearing a ‘white coat’; seemed exceptionally concerned about her patients). She was more thorough than any other doctor – it was obvious that she had even read Fred’s file.
She uncovered a potential issue that was noted in January that indicated there should be follow-up! She even called our home the next morning to ensure we understood and were following up which we did. And another Hospitalist called a few days later to find out if we had followed up with our Family Doctor.
When your Family Doctor calls you to make an appointment you can only assume there is something very important.
No doubt!
The Family Doctor admitted that the January report did indicate the need for follow up. 
He commented with a smile, “It must have fallen through the cracks.”
Did he actually read the report???
Whose CRACK was it anyway??
October 19th, 2017
The scheduled six month visit to the Wong doctor (the Nephrology Specialist that never shared information with us before) resulted in a Medical Rant from him about: how little other medical personnel knew about the interaction of medications with the kidneys; how wrong they usually are; how he had done the tests before Fred left the hospital in January; how he had discussed all the results of the tests with us (like the tests he had done and no concern in regard to potassium, etc) that we did not recall AT ALL.
We heard more from him that day than he had ever shared with us before. [2] 
Needless to say, this outburst relieved considerable anxiety.
We realize that we have been suffering from the Fear/Panic Syndrome.

[1] Hospitalists are “Physicians whose primary professional focus is the general medical care of hospitalized patients. Their activities include patient care, teaching, research, and leadership related to hospital medicine.” Society of Hospital Medicine http://www.albertahealthservices.ca/assets/info/hp/cfm/if-hp-cfm-annual-report-16-17.pdf page 12

[2] He did tell Fred his blood pressure was high after just one test and prescribed Coversil – that we questioned because his blood pressure had not been high before.

Jul 9, 2017

Rant #4 - And the Misadventure Continues . . .

Were we lulled into compliance or were things really getting more under control?
Our last visit major disappointment came when we visited the Kidney Specialist. He reinforced our discovery that most doctors, especially specialists, were not inclined to understand the concept of communicating.
As we sat anxiously in his office to find out if, what we were doing, was actually achieving anything. He walked into the office with a file; sat down at his desk; opened the file; and told us he would see us again in six months! 
 Nothing about how things were going or whether we were on the right track or . . . anything.
We were so shocked that we could not even remember what questions we wanted to ask.
Finally I managed to blurt out “What are the test scores? What do they mean?” I commented that when we saw him last he said Fred’s kidneys were functioning at a 18% level. His comment was “I didn’t say that!”
We both remembered that . . . but neither of us could see any advantage to questioning what he said.
Again, he may be a very competent doctor BUT how would you ever know?
Blood-letting (drawing blood) continues at the Lab, weekly, bi-weekly, or monthly to monitor the INR levels that regulate the blood thinner levels and the conflict still arises as to who calls us with the results.
We had thought that because the one doctor was the specialist, it was reasonable to get the results from his office and so chose that option.
For a while, both offices called us (the Specialist AND the office of the GP). Then the call came only from the Specialist’s office; then the GP’s office called wondering why they were not getting the Lab reports.
Apparently, the Lab no longer sends results to the GP but they are recorded on the network.
Oh, I did have a major clash with the nurse about getting the results and getting an on-going OK from the doctor to share the results.
On our next visit, I did ask the doctor about getting the results of the tests. His comment was that he has too many patients to do that.
I did ask him who the system was set up for, the patients or the doctors.
His answer to the question was not forthcoming so we did not wait for an answer.
Doctor's Rules Reign!

On June 28th – Fred retired the on-going Home Care Workers.

May 27, 2017

Medical Rant #3: And what would we do without them?

Now with all the disappointments, mistrust, and mistakes that have surrounded our Medical MisAdventures, we have finally found something that works!! 
 Alberta Health Services – Home Care

With no family nearby . . . no close friends . . . from the very beginning, Alberta Home Care has worked right along with us to come up with the best possible care options.
We arrived back in Lethbridge with NO idea what to do. One visit from Home Care set us off in the right direction – into the hospital in Lethbridge – the best place for Fred.
And then there is Lethbridge Family Services and the Home Care workers and staff. 


We have had Home Care Workers come in twice a day every day since Fred got out of the hospital almost 4 months ago.
There is a variety of Care Workers: some young; some not so young; some highly congenial; some very shy; . . . an incredible variety. Each one records any observation seen in the visit and immediately communicates these with their supervisors.
If there is a concern, we get a phone call from a Health Care nurse within a couple of hours to arrange any needed follow-up.
I must say, there is no pressure to leave the services. As our Case Manager said, “ Continuation of services depends complete on you. You are in charge of your Service.”
The workers have become like members of our family . . . we share our highs and lows with them and celebrate any accomplishment with them.
As Fred said this morning, “We couldn’t have any better care and service”.

Apr 22, 2017

Medical Rant #2

They Don’t Talk to Each Other
We became acutely aware that each silo of Specialty Care provides excellent service BUT does not consider what other issues or conditions may be affecting the health and well-being of the patient, nor does that medical specialist communicate or share information with other medical staff involved to ensure the safety and well-being of the patient.
1. Our first indication of problems in communication was the phone call we received from our Internist in Lethbridge that they had a bed in the hospital in Lethbridge to prepare the patient for his angiogram at the Libin Institute in Calgary. We received that phone call in the FMC as we were waiting for the patient to recover from the angioplasty that he just had. The Internist was the doctor who had referred the patient in the first place. He did not know we were already admitted in Calgary for the procedure.
2. After the Cardiac Team decided on what procedure and timing they recommended the patient was transferred back to the Chinook Regional facility, we had the opportunity to see the aforementioned Internist who asked us what was going on. To me, that indicated that he had either not been sent the information or did not had an opportunity to update himself on the progress of the case.
3. When the patient visited his family doctor after a trip to Emergency at the Chinook Regional, the Family Doctor knew nothing about what treatment the patient had received. Again he had not been informed about any of the procedures or case plans for the patient. The only way he was aware of anything going on was a lab report from the hospital. With each admission, the patient provided information about the name of the family doctor.
4. There was a huge gap in providing the patient with information about where he needed to go for what.

Apr 21, 2017

Welcome to Lethbridge (Chinook Regional)

The best thing about being back in Lethbridge was that we were home and away from the unforgiving constraints, impatience and invisibility of Calgary – not that constraints, impatience and invisibility don’t exist in Lethbridge, they are simply on a different scale.
The first encounter with the Lethbridge EMS and the Chinook Regional Hospital was the result of the first visit from the Home Care Worker. She took one look at Fred and called 911.
They didn’t keep him in the hospital that time and sent him home with a prescription for some pain meds and a suggestion for a referral to a Kidney Specialist.
A few days later when the pain was even more intense they kept him in the hospital to try and assess what was going on. He was referred to Dr. Wong (the Renal Doctor)  BUT we only saw his resident, who was personable, seemed to know what she is doing and attempted to explain to us what they were doing.
They monitored his potassium, INR and put him on a catheter.  He had little energy or motivation but is finally started eating solid food. They did take it a little far-this is what they gave him for supper one night.
The incision was healing well but we needed to get the pain under control WITHOUT causing more harm to the kidneys.
They don’t communicate with each other
The Renal Doctor told us that they were reluctant to give him diuretics because it was so hard on the kidneys. The next day, the nurse came in and without explanation (until I asked him what he was doing) pumped a diuretic intravenously. He said that was what the ward doctor had ordered.
I wish to hell the doctors would either talk to each other or, at least read the files to find out what other issues the patient might have!!!!!
Every day has been a whirlwind of random activities just to keep things under control.
I have seen small steps of improvement every day, but his confidence has been  effected.

Home Care has been more than I ever expected. Immediately - like the same day he got home - we had a care worker up here to help him with the catheter bags - then twice the next day - phone calls to see how things are going - someone comes in to help him have a shower and a nurse comes in to help when it comes time to take out the catheter.
February – April
Two months of trying to find out WHY his kidney is not functioning the way it should and why his bladder is not expelling the urine.
The Renal Doctor (the WONG doctor) seemed to quite looking for any explanations. Yes, he looked at the creatinine levels (I think), referred us to a dietitian and said come back in 6 weeks.
The Urologist seemed a little more concerned. He scheduled another test ( a urology dynamic test) that is supposed to reveal more information about what is going on. Unfortunately the Nurse-technician who performed the test “forgot her glasses”.
Can you believe a person who has to input catheters into a human body AND data into a computer can function without proper vision and be completely unconcerned about it ???
We became VERY concerned when Fred was in severe pain and the Home Care Nurse came up the following night to discover the nurse had put in an 18 gage catheter instead of a 14 gage one. Also, there was only 5 cc of fluid in the balloon (that keeps the catheter in the bladder) instead of 10 cc.
The next visit with the Urologist revealed that the dynamic test revealed nothing and he then did a scope through the urethra to the bladder. It looked clean. The only conclusion he came up with was that the muscle that controls the flow of urine is not functioning and Fred will need the catheter forever more.
We were hoping for some direction from the Kidney doctor (the Wong doctor) who told us ABSOLUTELY nothing. He walked into the room, opened the file and said “we will see you in 6 months”. THAT WAS IT.
We were so shocked, we didn’t even say anything.


Apr 14, 2017

Fred’s Medical Mis-Adventure

Since September, 2016 Fred has developed an intimate relationship with the Health Care system – in fact we both have. Fred’s started with pains in his chest; mine transgressed into a lot of advocacy and frustration in dealing with a broken Medical System and a spouse that needed a lot of care.
In Emergency, in September, they confirmed that Fred had not had a heart attack but they did not know what was going on.
After a week in the hospital, they really couldn't find anything wrong with his heart – needed to do more testing. His kidneys were not functioning at their peek and they won't do an angiogram (which is the only test that would give us any more information about what his heart is doing) while his creatinine is so high and this can only be done in Calgary
According to the doctor, there is nothing we can do for that except keep flushing out his kidneys with lots of water. I asked the doctor whether our elevated levels of anxiety were warranted and he said we are in the process of dealing with of some of the issues so we can relax a bit.
Finally, they decide they can dilute the dye enough to be relative safe for the angiogram and we managed to get an appointment for the angiogram and possibly an angioplasty – clean out the artery – and insert a stent to keep it clear.
We were at the Foothills hospital in Calgary (about 2 ½ hours away) by 6:45 am on Friday, October 21.  Fred was admitted and had an angiogram, angioplasty and a stent put in by 10 am.
Another oops! Things screwed up! They were still trying to figure out why he was still short of breathe and got pain sometimes but not others so they kept him in there to monitor.
They decided that he had a sticky valve and it should be either repaired or replaced and that meant surgery. BUT they won't have any definite plan until their conference meeting at the end of the week. 
They flew Fred back to the hospital in Lethbridge and he stayed there for over a week until the first of November.
Got a phone call from the cardiac team in Calgary saying they want him up for a consultation interview with the surgeon – so off to Calgary, again.
Saw the surgeon who said everything looked good for surgery in early January. 
Doctor did a lot of explaining which helped ease our totally frantic minds!
 He explained all the worn out or damaged parts of Fred's heart and what has been done and what still needs to be done to sustain his lifestyle.
It all sounded so reasonable
Because he had the angiogram and the angioplasty, he needed to be on the anti rejection drugs for at least 6 weeks before they can do the open-heart surgery. So he targeted the first week in January for the surgery – 5 days to a week in the hospital and then 2-3 month to recuperate.
I asked him if we should cancel our reservations on the Island for March and he said "No".
Good sign!!
So much for Good Signs!!
There is no way that a surgery as complicated and complex as a heart valve replacement could be as ordinary and mundane as they let on. As time got closer, our anxiety levels grew and grew. When they postponed the surgery until after the New Year, our demeanours were rather indescribable. 
It took all we could do to get it together and travel the 3 hours to Calgary to the ‘Foothills Medical Centre’.
The Cardiology Department (called the Libin Cardiology Institute) is a well-oiled mechanism. In fact, Henry Ford would by very proud of the organizational structure . . . it brought to mind the assembly line at a Ford Motor plant: Assembly Line Americanization (https://michiganjournalhistory.files.wordpress.com/2014/02/fall-12-firsht.pdf)
The steps are precisely defined and do not deviate:
1.      Do the surgery.
2.     Doctor reports to patient’s care-giver (s).
3.     Doctor tells the staff when visitors can see the patient.
4.     Patient in Cardiac ICU.
5.     Visitor (s) sees patient.
Hustle-bustle . . .
6.     Patient stays in the ICU until there is a bed available in the step-down unit.
7.     Then the patient is moved to a less monitored area until they can manoeuvre 3 flights of stairs.
8.     The Patient is discharged.
So, let me tell you what it is like from a Patient and Care-givers Point of View
Steps 1 to 3 - The first three steps seemed to go smoothly and according to Libin’s standard procedures.
The doctor reports that the surgery went well and we do not see him again the whole time we are there.
Steps 4 and 5 - The Cardiac ICU is wedged into a tight little space that is too small for the number of patients and staff jammed into it.
At least one patient, Fred, in this case, is suspended half-way into the hall.
This is where they supposedly keep a close eye on the patients – or at least on the monitor screen that records each patient’s progress generated by wireless devices attached to various parts of their bodies.
No rest for the wicked – they start them doing exercises and moving around right away – that is, when the nursing staff are not overtaken with their pregnancies and babies (or that is the way it appears when the visitors or patients look for something. You could usually find them huddled in the hallway discussing the latest pregnancy symptoms or baby behaviour).
Step 6 – the beds in the Step-down Unit seemed to be at a premium and it took a couple of days to get moved into another unit where patients get less attention but apparently each patient is monitored from mechanisms at the nursing station.
 Step 7 – The Step-down Unit is where they ‘get the patient ready to leave’ or be discharged, as they put it. There are physical therapists with exercises you need to do; respiratory therapists with breathing instructions to get and keep the mucus out of your lungs; dieticians – “Oh my, your kidneys are not functioning very well – you need to avoid these food. Here are dietary suggestions when you are on blood thinners . . .; pharmacists with a list of over a dozen medications with a schedule of when they should be taken, and the occasional doctor who comes around. 

 Each has his/her own specialty and each gives the patient reams and reams of information that becomes overwhelming the patient becomes totally confused.
Another day . . . Onward and upward! – Fred managed to ascend and descend a couple flights of stairs.
I talked to the Social Worker to see if we could get him transferred to Lethbridge. The message I got was that “Lethbridge is also wanting for beds and it may be a week or so before he could get in there”.
7:30 am – the morning of January 11, 2016
Swollen feet and all – they are discharging him . . . NOW!
The sign on the wall says “Discharge time 9:30 am
No, they want him out now.
I wasn’t ready . . . packing both myself and the car; getting to the hospital; getting parked; getting to where Fred had been . . . all that took time.
I arrived at the room where Fred had been; an empty bed; a severe sense of being invisible . . . no one but the cleaning staff would even acknowledge I was there or tell me where Fred might be.
“Down at the end of the hall,” she told me.
And there he was sitting in a chair along the wall in front of a blank television monitor.
They needed me to be there – it was only 10:30 am – they needed me to watch the EXIT video so they could complete their get-out-of-hospital check-list; and get him out of there so the assembly line could start again.
We were rather compliant until it came time to leave . . . now what? 
He could not get his shoes on because his feet were so swollen; he couldn’t walk that far, anyway; I could not handle a wheelchair plus his suitcase . . . the reluctance to help was overwhelming.
Finally a new student popped up and said she would help us.
Great! BUT she was only allowed to go as far as the front lobby of the hospital (more rules and regulations) and a Volunteer would have to help us from there.
We found the Volunteer but she could not leave her post at the Information Desk until the only other Volunteer showed up (there were only two) to take her place. Finally, finally, he showed up and the km trek to the car in the only heated parking lot began.
No strain . . . lots of pain
First off, they discharged him with no pain medication. There we were, in the car for almost 3 hours - he hurt and was certainly not a happy camper. 
We stopped a few times but all he could do was get out of the car and turn in a circle. It was so windy and slippery, he was afraid that if he walked around, he would fall down.
We got home and discovered he really couldn't get himself into the bed and the hide-a-bed was too low so we tried to pillow him up in one of the chairs.
My first chore was to go pick up all the scripts that the hospital sent to the pharmacy.  It was then I found out that the doctors had not even sent along a prescription for anything for the pain.
Believe me when you get your chest broken open and put back together, THERE IS PAIN!!
Why oh why would they possibly not give him a prescription for the PAIN MEDICATION?
I sat with the pharmacist for almost 1/2 hour while she explained and described each one of the medications so I understood what they were; what they were for and when he had to take each one.
Night No. 1 was a total fiasco - no sleep - up and down trying to keep him relatively comfortable.
Day No. 2 – a marathon - getting a script for Pain meds which meant getting a hold of the doctor; getting him to make a referral for Home Care; cancelling the lab because there was no way of getting him there; and finding a way for Fred to be comfortable for the night so we both could sleep.
I must have hit 5 different furniture stores and finally found a power recliner that would fit into the condo - remember he cannot use his arms to get up or down because it would put pressure on the sternum. (Actually, the recliner is really nice)
home care were on –the-job right away; the specialist wanted him to get his blood checked - my first statement to the nurse was to ask the doctor if he wanted to come over and try and get him to the lab. That quickly prompted the effort to get someone to come over and draw the blood - which happened.
What do people do if they can't advocate for themselves or have someone else to do it for them? They must just get lost in the shuffle.
 And that was only the first week!

Good Surgery . . . Rugged Recovery
It is totally amazing how the surgery . . . process leading up to the surgery; the actual surgery; immediate after-surgery care . . . is so well planned and carried out. Unfortunately, the phase between the after-surgery care and the recovery phase . . . the planning for the after-surgery state of affairs and issues . . . is almost non-existent.
The Disregarded Patient – The Forgotten Step
Step 9 – What happens after the patient leaves the hospital?
Once patients hit the second step-down ­bed, it becomes a race to get them out of the support and protection of the institution.
Unfortunately, they forgot that most people do not fit into the scenario they present in the video.
This is especially true for the patient who does not live in the city. To their credit, the staff is well versed in the resources available in the immediate community. Unfortunately, they seem totally unfamiliar with resources and restrictions outside their areas.
The only service area that reached out to resources in Lethbridge was the Pharmacy. They forwarded a list of all the prescriptions to the pharmacy in Lethbridge.
Unfortunately, again it was an attempt but not complete. The omission of pain medications created considerable unnecessary anxiety. Also, neither the Family Doctor nor the Internal Specialist was notified about prescriptions.
Fortunately, in our case, for the most part, we tend not to just sat back and let things happen and pursued every avenue we uncovered to get the right help for what we needed. I think we have figured out which doctor to contact for what and who you don’t ask in regard to which issues.
For example, Fred has a weekly blood test to adjust one particular medication which is cardiac related. The results go to two different doctors (the Family Doctor and the Internist-Cardiac guy) and they both call to give him the results and directions for the coming week. We have tried to tell them we only need to hear from one (preferably the Internist) to no avail so we just let it happen.
We now have relationships with 5 different doctors and a bunch of other care-providers:
1.      The Cardiac Surgeon – who we have not seen since the surgery
2.     The Internist – who we go to with the heart stuff here in Lethbridge
3.     The Renal Doctor – he does various tests and monitors the kidney function – responsible for functioning from the kidney to the bladder.
4.     The Urologist – again does various tests and monitors the bladder and catheter – responsible for functioning from the bladder through the urethra.
5.     The Family Doctor – supposedly co-ordinates things – Supposedly is the operative word here. Unfortunately he does not seem to get information from the other service providers.
Provincial Health Services:
a.      Home Care nurse
b.     Home Care workers (in twice a day to do the physical stuff)
c.      Dietician
d.     Cardiac Rehab Program
That’s all I can think of right now.
Individually, each service seems to have competent and well trained staff . . . BUT . . . as a care-giver or patient . . . it feels like the patient has been left out of the equation. The patient is there to give the doctors something to work on.

The after-care procedure feels much like taking a car in for service. After the car is hooked up to the diagnostic machine and the gas and oil are checked, a specialist takes over to suggest which specific module needs to be repaired or replaced.

My poor aging body and mind are having a difficult time keeping up with everything!!
But we will not surrender!!!

Rant #6 - Lets Talk About Primary Care

Originally, I was so pleased to find out that our Medical Clinic (the Haig Clinic) was part of the Primary Care Network here in Southern ...