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 DON’T THINK SO!!

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!!!