On why we need long term relationships with the same doctor….

I’ve been struggling to breathe for the past few weeks. As I mentioned, in a previous post, it all started with an anaphylactic reaction in mid May that I have never fully recovered from.

Almost two months later and I’m still struggling. Consequently I’m signed off work and working with a variety of different specialists as we try and work out what the problem is.

Oddly enough, I did gain some relief when I was given iodine by I.V. for a CT scan. Nobody can quite work out how this had an impact, or is willing (yet) to do it again just to see if it works again!

Instead I’m still on high dose steroids and doing a very, very slow taper in the hope that I can get off them this time (having tried twice before with disastrous consequences) so that testing is actually useful. Unfortunately while steroids are keeping me alive they are also masking what’s causing the problem. It’s a pretty effective Catch 22.

In the meantime these experiences have raised two issues that really bother me:

  1. the lack of compassion for fear, anxiety and panic that goes alongside not being able to breathe.
  2. the need for long term relationships with family doctors for patients with chronic disease/invisible disabilities

You’d think that doctors, of all people, would understand that it’s pretty scary to have to seriously think about how to breathe. To actually purposively force yourself to breathe out and to exhale as best you can, but not too far, so that you don’t trigger another asthma attack or start coughing again.

Breathing is something that we do without thinking, usually. When a baby is born, everybody waits for the first cry to demonstrate that the baby has transitioned from getting oxygen through the placenta and umbilical cord to being able to breathe using its own lungs.

The problem is that when it’s hard to identify a reason for a problem, such as a difficulty breathing, it is very easy for doctors to decide that it must be psychological. It’s all in my head!

The problem with that is that I’m the first to say that some of the problem is psychological.

I’d be insane if it didn’t.

Think about it.

Two months ago I went from sitting quietly waiting to see my doctor, not even thinking about breathing at all, to fighting to get even the slightest amount of air into an airway that was shutting down and swelling faster than I could get help. I had to fight for each and every breath. I had to specifically focus on breathing in and breathing out. Every single breath. Consider that for a moment. Really think about what that’s like.

If you’ve ever tried to swim under water and pushed it a little too far, or been punched in the stomach and winded so badly that you can’t catch your breath;  you’ve got an inkling of what I’m talking about. Except I haven’t recovered.

This went on for almost two hours before I was able to breath without deliberately thinking about every single breath.

Since then my breathing has returned to being unconscious; to an extent.

I’m not fighting to get air past a swollen airway anymore.

In fact, we’ve managed to get the asthma component under control to the extent that my lungs are no longer diffusely wheezy and the stridor has mostly gone.

That I.V. iodine seemed to relax my lungs a little too, so that they’re not as tight as they were. Maybe it was just a timing coincidence or that one of the positions I had to be in for the CT scan helped them loosen up, and it wasn’t the iodine. I don’t know for sure. But I felt them relax a little, and my doctors have observed less tightness in my lungs since then as well. Whatever caused it – I’ll take it!

However, I’m still struggling to breathe. That means that I can sit and do nothing but read, write, colour or watch NetFlix/movies and as long as I don’t get emotional I can breathe without thinking.

However, if I watch something funny or sad and laugh or cry…. that changes. I have to deliberately think about breathing again.

If I get up to go and let the dogs out, I have to think to breathe again.

Go to the bathroom, think to breathe again.

It’s not that the autonomous breathing stops when I do something; it’s more that the impact on my breathing of my doing something means that I have to control how much air I try and breathe in and out. If I don’t then I start to cough and my lungs tighten up fast and very quickly I’m in a full blown asthma attack once more, or just going slightly blue.

Neither of which are good.

Especially many times a day.

So this is my current reality.

The problem is that what I’m describing also sounds very much like a panic attack.

“My body feels tingly and I get dizzy. I feel like ice is running through my veins. I want to run away from my body but I can’t, of course. Shallow breathing. Heart racing. Total panic.”

To the new doctors, who don’t know me, it then becomes fairly simply to assume that I’m having a panic attack. That much of my problem is anxiety based.

Thankfully, it hasn’t taken long for the majority of them to realize that it’s going on a very, very long time and thus is not a panic attack! That my oxygen levels are low and that my heart rate really is sky high and that I’m actually doing all that I can to stop it.

Some of the physiological symptoms are the same for me right now, as they would be if I were having a panic attack; but some of them are not.

In a panic attack, blood sugar level increases, eyes dilate, sweat glands perspire, heart rate increases, mouth becomes dry, muscles tense, and
blood decreases in arms and legs and pools in head and trunk. Many people will start to hyperventilate; that is breathing rapidly and shallowly from the upper lungs and discharging too much carbon dioxide.

In my case though, close observation will show you that my eyes are not dilated, that my mouth is not dry, that most of my muscles are actually relaxed, aside from those that I’m using in my lower back and abdomen to force air out of my lower lungs.

I am breathing far too fast but if you look at what I’m breathing out (oxygen levels) I’m not discharging carbon dioxide at all, let alone discharging too much.

It’s not a panic attack.

However, sometimes what they see is my trained response. I’m a severe asthmatic. I’ve had brittle (hard to control) asthma for over two decades. I was also a flute player, and more recently, learned to play the saxophone. I know how to breathe using all of my lungs. I naturally breathe from my diaphragm. If you watch me breath it’s my stomach that moves, not my chest.

I know how to use my abdominal and back muscles to force my lower lungs to work. However, the breathing exercises that I do are exactly the same as those used to control a panic attack, or to reduce breathing issues due to anxiety.

So we end up in an interesting cycle.

I can’t breath properly.

I see a new doctor and they can’t find a cause so initially they decide that it must be psychological, at least in part. (This is only initially and to be fair, only one doctor has actually stayed with this idea past spending 5 minutes with me).

They inform me of this, and this is where I have a problem. How they say this to me makes all the difference in the world.

If they recognize that what I’m experiencing is terrifying and that it’s totally normal to be anxious, or panicking that works just fine for me.

I agree. I totally agree. Some of the issue is that I’m anxious, panicking, in fact; absolutely terrified.

My problem is when they stop at that point, or worse still suggest treating me like its a panic attack. Then I have a serious problem.

25 years ago I was young, stupid and not aware of how serious asthma can be. It was the summer holidays from university and I was working two jobs. I had an asthma attack. It was serious. I was taken to hospital by ambulance.

Unfortunately I then got treated by a very junior doctor who didn’t know enough to know that he didn’t know everything. I’m an atypical asthmatic. I can go from normal breathing to a silent chest without ever wheezing.

A silent chest can be fatal. It means that I am so tired from trying to breathe that I literally can’t generate enough air to create a wheeze. If not treated properly it can lead to respiratory failure and death, within minutes.

It almost did on this occasion. The junior doctor decided that I was having a panic attack, not an asthma attack. Instead of putting me on oxygen to increase the amount of oxygen I was breathing in he had me breath in and out of a brown paper bag to increase the amount of carbon dioxide I was breathing in.

I was very lucky for just as he was trying to get me to do this, and I was far too tired to fight him, a nurse walked by who had seen me in the hospital with asthma a number of times previously. She immediately educated the young doctor and efficiently had me on oxygen and blood gases drawn before he knew what had happened.

Once I recovered from this episode I was educated by my own doctors that I needed to advocate for myself better. To insist on blood gases being drawn to show true oxygen levels and to always refuse to be treated with a brown paper bag!

So back to my current situation and all of that runs through my mind when the doctor in front of me is suggesting that my difficulties are due to my being anxious and stressed!

Too right I’m anxious and stressed! However, you’ve just made it 1,000 times worse as I’m now aware that I can’t just concentrate on breathing but I have to educate you too! Or you are literally going to kill me!

Thankfully, for me. I have a family doctor that I see regularly and knows me well. So when the one specialist suggested to her, that my breathing problems were really a prolonged panic attack, he got educated.

He was informed about just how long this has been going on. That my family doctor has been seeing me weekly. That she was there and treated me during the initial anaphylaxis. That yes, I have tremendous levels of stress in my life but that I’m doing everything that I can to deal with it and there is nothing else that I can do to minimize it. That yes, I have good reason to be terrified of being admitted to hospital. That I really did experience my last three serious life-threatening anaphylactic reactions in her waiting room, and as an in-patient in the hospital that he wanted to admit me too. That I am educated and know what I’m talking about when I explain my medication and treatment protocols.

As a result, the next time that I saw this same specialist it was a very different experience for me. He wasn’t unprofessional the first time. He was just a little less compassionate than I’d like. He didn’t know about my experience with that junior doctor two decades ago. He also doesn’t know that what he considers high stress is so far below my lowest stress point that I can’t even see it anymore. He’s just dealing with what’s being presented to him right now.

That’s important. That’s needed. The point of a specialist is to bring a new perspective. One that is specialized in this specific area of concern.

However we also need our family doctors to be in relationship with us. We need that advocacy that my doctor was able to provide for me. She can do that because she has seen me many times a year for six years now.

The result of this is that when that specialist told me that I needed to consider hospitalization I dug my heels in, fought back, and simply refused. If he’d been a little more understanding, or taken the time to know me better I would have been more receptive, maybe.

When my family doctor said it just 24 hours later – I agreed to be admitted to get the CT scan done immediately. I knew that she knew that I was out of resources. That I was terrified of being in the hospital but that if she was saying that I needed to do it, I needed to do it. Thankfully I was only admitted for part of the day and able to go home later on.

So when people say just use a walk-in centre, or go to Emerg, that it’s not important for us to see the same family doctor all the time… They’re wrong.

Those of us with chronic conditions do need to see the same doctor regularly. We do need to build relationships with them. For we are far more likely to have to need to see specialists and when we do, we need our family doctors to advocate for us. Especially those of us that are different and unique in how we present.

So is part of my breathing difficulty psychological? – absolutely.

Is there an element of a panic attack happening when I’m faced with a specialist who is a little less compassionate, or thoughtful in how they speak to me. Definitely.

However, none of that changes the fact that I still can’t breathe properly.

Or that this has been going on for two months now, continuously.

I’m exhausted from having to work at something that you take for granted.

So please, new specialists, have a little compassion for me. Understand that I recognize that there is a psychological component to this. Recognize that I am doing everything that I possibly can to help myself.

Together we can get to the bottom of this and find a solution.

Believe me, I’d far rather be back at work than be in your waiting room.

Today I turn 45.

Please may I have the best birthday present ever?

I’ll accept it late! Anytime in the next few days would do, weeks if I have to but please not more months….I just want to be able to breathe without pain, breathe without thinking about it, live my life once more!

2 thoughts on “On why we need long term relationships with the same doctor….”

  1. A powerful and, as I would expect from you, articulate piece. I DO hope you get to the bottom of the issue or find a management strategy you can rely on……. and I wish that you get your birthday wish come true.

    Regards Jean

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