Acute and Chronic

After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.

Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.

With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.

Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.

Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.

My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.

I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?

I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?

My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.

I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.

I picture myself on arrival at the hospital:

Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?

That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.

I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.

Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?

Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.

Taxi!

Action Plans

Simple definitions:


Acute illness:

• Rapid onset
• Severe symptoms
• Short course

Chronic illness:

• Of long duration
• (often developing slowly or insidiously)
• Variable severity

Seeing acute and chronic illness separated and delineated makes them seem clearly distinct from one another.

However, in real life, things are often not so simple. Let's take asthma as an example:

I have been diagnosed with asthma since 1988. That is a long time. I would feel comfortable saying that I have chronic asthma. I take lots of different medications to treat my asthma, including daily high-dose oral steroids (Prednisolone). I nebulise medications every day and get daily symptoms of asthma. Again, this is easy. I have severe chronic asthma.

So what about when I have a flare-up of asthma. Sometimes this comes on subtly, making each breath shorter and more difficult over a period of hours or days; sometimes it happens in minutes. This is clearly an acute reaction (especially the rapid reaction, which is often a response to some allergen or other). The acute reaction is easy: I am having an acute flare on a background of chronic asthma. It's less easy to spot the acute exacerbation when it happens less quickly, and it can be very difficult to know where to draw the line between these situations:

1. I can manage this situation at home by increasing my normal medications
2. I need to speak to my GP or asthma nurse about extra treatment to keep me at home (e.g. extra steroids or antibiotics)
3. I need treatment in hospital

The time to decide which situations fit into each of the above treatment plans is NOT when you are having an acute flare. Hypoxia does not help good decision making. For me personally, the desire to stay at home becomes overwhelmingly strong when I'm not well. Hospital, with the undignified gown, endless questions, needle-sticks and bright lights, is not nearly as appealing as my big, soft bed at home.

The best solution to this is to get together with your GP (or consultant, or specialist nurse) and agree a plan. For asthma, you might use peak flow measurement as a guide; for diabetes it might be blood sugar measurements; for gastroparesis, it might be body weight in combination with certain symptoms.

My asthma plan:

• Peak flow more than 80% of normal: Carry on as normal
• Peak flow between 50% and 80%: Increase oral and inhaled steroids, use nebuliser as often as four-hourly if necessary; contact GP
• Peak flow less than 50%: Go to hospital. Go straight to hospital. Do not pass Go. Do not collect £200.

There are other signs that fit into this, that indicate clear deterioration: waking at night more often than usual with coughing/wheezing, inability to talk in complete sentences without needing to take a breath, pulse rate more than 120 per minute (this is a bit iffy, because I have autonomic dysfunction, which messes with my heart rate), shortness of breath at rest, needing to use the nebuliser more often than every three hours. 

Having these signs and symptoms written down in black and white means that the pressure of making a decision is lighter. Without such a plan, I would tend to continue to try all the drugs available to me at home, and wait, and wait, and wait.

I don't want to make a fuss. I don't want them to think that I'm overreacting. I have stuff to do. I don't want to be admitted to the hospital. I'll just try one more nebuliser...

And wait...

Until it's nearly too late, and I end up in the Intensive Care Unit on a ventilator.

Because I didn't want to make a fuss.

I have a chronic illness, which means that I live with daily, constant symptoms, and it can be very easy to become blase about them, even when they become quite severe, as in the case of an acute asthma attack. Having cut-off points agreed in advance with your specialists (GP, consultant, specialist nurses), written down and reviewed regularly, mean that you don't have to make a decision. I'm not making a fuss, I'm just following my action plan.

Action plans save lives.