My doctors are not listening

Day 757.

Yesterday I went to see my GP to try and take control of some of my health concerns.

Last time I visited her, I went through a list of concerns with her. That visit ended with me crying in frustration in her office. She did not think any of my health concerns were anything to worry about. And then she focused on my crying and wanted to prescribe me something for anxiety.

I am really trying to see things from her point, and do want to take her opinion seriously. But at the same time I do not feel that my concerns are being taken seriously.

Seeing my therapist

Since that visit I have had two appointments with my psychologist. Her speciality is counseling folks who suffer medical difficulties like cancer. I have spoken to her about everything I have gone through with my mum dying, the ongoing arrhythmias and my frustrations with the doctors.

Her advice has been to try and take control of some of these issues. A lot of my concern right now is that some things seem out of control, and I don't see a way forward.

Finding doctors who can help

To get some control, I have taken my current list of health concerns and tried to see if there are any specialists in New Zealand who I can talk to about them.

I have landed on two specialists:

• A pulmonologist in Auckland who has a special interest in sarcoidosis

• An electrophysiologist in Auckland who has a special interest in VT ablations

The pulmonologist has been recommended on patient support groups for sarcoidosis in New Zealand. I have decided that the reason my GP might not be as concerned with some of my symptoms is because she does not know sarcoidosis. This may or may not be correct. But the only way I will know for sure is to speak to a doctor who does know sarcoidosis.

I would also like to get a second opinion from the electrophysiologist about a VT ablation. I can't deal with more VT or VFib arrhythmias. The Amiodarone isn't controlling it. I am also worried about being on Amiodarone long term. Every time I have seen the cardiology team at the hospital, they have just changed my device settings and sent me on my way. They have raised an ablation numerous times, but never quite see things as urgent enough to warrant doing something.

I have heard that VT ablation is recommended more by private sector cardiologists than by public sector cardiologists. That has been the slow burning driver for me to make this decision (finally).

My latest GP visit

I decided to go to my GP and ask her for referrals to these doctors. I was hesitant based on her lack of support on my last visit.

My GP was worried that the sarcoidosis specialist might not want to see me based on the fact that I don't have lung involvement. I assured her that I already contacted the specialist to confirm if that would be a problem, and she said that it wouldn't be - she sees all types of sarcoidosis patients. My GP agreed to refer me.

Next up, I spoke to my GP about the electrophysiologist for a second opinion. She did not want to refer me to someone outside my city. She thought it would be too cumbersome for my cardiologist to send them my paperwork. She did not want me to go outside my current care team, as they know my history. She pushed me to contact my current team about an ablation instead.

I raised my concerns about them not seriously considering it, and not seeing one doctor in that team consistently. They may have my files, but each visit I see a different cardiology registrar who doesn't have my history anyway.

I became frustrated with my GP again. Spoiler alert: I cried again. Fucking tears.

So we ended the appointment with one referral and another push by my GP for me to go on anxiety medication.

I told her that my anxiety was under control when my health was under control. I need to have some actions in place to ensure that I have some hope that my health will improve.

She acknowledged it, but wouldn't budge on the cardiologist or the anxiety meds push.

I left with only a partial victory.

Power imbalance

I am really at a loss. In South Africa I could just make an appointment with a specialist. In New Zealand I need to convince a doctor to take me seriously for a referral to happen.

I basically asked for a second opinion and was told "no".

I feel really at the mercy of the medical system. And I don't feel taken seriously.

Now I have to try my existing cardiology team. Again. Do we think I am going to have a different result?