Cardiac sarcoidosis changed my outlook on the medical profession

Day 1014.

I had never had any major medical issues before this.

When I used to go to a doctor and they would ask me if I had any allergies? I would say no. Any past surgeries? No. Any long term medication? No. Any pre-existing conditions? No.

In fact, I hardly visited the doctor at all. How things have changed.

Now I have had surgery for my ICD placement. I have been on a shopping list of medication: Prednisone, Methotrexate, Infliximab, Folic Acid, Omeprazole, Bisoprolol, Entestro, Amiodarone, Candesartan, Furosemide. I have conditions that make doctors and nurses pause when I mention them.

All of these things have been a huge adjustment.

Everything takes time

One of the big things I had to get used to when I first got diagnosed is that everything takes time in medicine. It takes a couple of months for them to see if a medication is working or making you feel bad. And then some more months before you will have a scan. And then some months to see if Prednisone withdrawal works before another scan.

It also takes time to get referrals. Your GP is your primary care provider - your first port of call. You may need multiple visits to discuss the same thing before they will consider referring you to a specialist for that issue.

Specialists have huge wait times here in New Zealand. Especially in the public sector. Getting an appointment is only the first hurdle. Wait times can be up to a year for "non-urgent" issues. I had severe back pain for almost 9 months before I could get an appointment with an orthopaedic surgeon, and that was privately. I then had to wait a another 9 months for the MRI due to an ICD technician not being available.

In every other aspect of our lives we have become accustomed to almost instantaneous gratification of our needs. It feels counter-intuitive for these sometimes life-changing problems to be responded to so slowly. I am still not used to this, to be honest. And I never know when I should challenge it. I have become much more likely to visit an Emergency Department if I don't feel well or unusual.

Due to these long time delays, it is very important that you are happy with your doctors and their treatment of you. You can lose months down a specific path of treatment. I complain a lot on this blog, but I have been lucky with my treatment overall.

Some doctors don't like to explain

I have really come to value talking with my doctors about why they are making a specific diagnosis or dismissing a specific problem or choosing a specific treatment plan. I have a lot going on with my body and with my medication. I pay a lot of attention to my blood test results, overall trends of test results and my symptom history.

When a doctor appears to dismiss one of my concerns, I would like to understand why. What is the problem being attributed to? Why are we deciding to do something or nothing?

Finding doctors who are open to discussing their thought process is not a given, I have found. I think sometimes it is from a desire not to cause anxiety in the patient (me). I think other times it may just be that the doctor has never been expected to bring the patient along on the journey - some patients don't want to know the details, and just want an answer.

When you do find a doctor who is open to these types of discussions, it can be a breath of fresh air.

I now love paramedics

Every time I have interacted with paramedics have been special. They always arrive and immediately take my concerns very seriously. They have always been consummate professionals. I am in awe of them, really.

It has gotten me started to listening to emergency medicine podcasts, watching emergency medicine reality shows / documentaries, and even researching what a paramedic career would involve.

Some of my favourite podcasts are:

• EMS 20/20

• The Resus Room

I have seriously considered a career change to paramedicine. Some things holding me back from pursuing this are: potential inability to drive from time to time, pre-existing health conditions need to be evaluated by the ambulance service here in Wellington before you start studying, a very rigid work schedule (at the moment I enjoy the flexibility of my job with my son being quite young and in school), and fear that fatigue would keep me from being a great paramedic.

I also hated biology in school, but I am finding the medical field fascinating at the moment.