….Or maybe that should be “Natter with a Nutritionist!”….
So it was 9:30 AM on my birthday morning and I was just thinking about getting ready before my coffee party and my Parents arriving, and the phone rang. Turned out it was one of the Dieticians from the Royal Brompton Hospital phoning me for a ‘then and there’ consultation. She started by asking me my date of birth so I said “today” and that sort of made her laugh she asked if I could bare to have a phone consultation on my birthday and I said “yes”! She understood that is virtually impossible for me to get to a clinic appointment at the moment. They only hold Dietetics clinics once a month on a Thursday morning and that’s no good because of course I am always working.
So she asked me lots of questions about what I eat and my typical breakfast, lunch, dinner, snacks, drinks etc, and she tried to calculate quickly how much I eating calorie-wise, fats-wise and with my height and weight what might bmi is. Apparently it is around 16 which is really much too low. She then suggested that I need about an extra thousand calories a day on top of my normal food intake, but I just don’t have the appetite or stomach space to eat that much more and therefore I need to replace this with supplemental feeding. This is what I have been doing for the last 5 to 6 years although for the last three months I have been off my feeds because I have been trying to reduce my cholesterol and concentrating on eating low-fat
Whilst this has been beneficial in reducing my cholesterol from 6.99 to 5.14, it has also reduced by weight by about 5 kg. We went through all the things that I should be eating ie more of the good fats like monounsaturated fats, olive oil, rapeseed oil almonds and walnuts. And the things that I used to eat on a high fat diet before I realised my cholesterol was bad, such as butter, whole milk and the saturated fats. I do like and eat a lot of oily fish fresh tuna, salmon, and I’m now going to try and have sardines and I’ve been told to have as much honey, jam and sugar as I can because that is good calories but no fat.
And at last I can have my supplements re-added to my prescription and therefore my diet. I used to have Scandishakes and Ensure Plus milkshakes but they have a lot of fat in them so I’m now going to have Ensure Plus Juce-lemon and lime flavour as that is my favourite.
They are pure carb calories and sugar calories but no fat and I am going to be having two a day of those between meals. We are also going to take away my Pro Cal shot as that is all fat, and replace it with three shots of Polycal Liquid which will give me 270kcal per 100mls.
If I have three shots of that a day it will give me an extra 300 calories and the two Ensure Plus Juces will give me another 660 cal so that is very nearly the extra 1000 calories that I need.
So why do I need all these extra calories unlike everybody else when I’m on long term Pred? And, as you know, I’m the opposite of overweight. Plus I’m not exactly over active either- in fact I’m pretty sedentry at home in my own environment and I also ride around on Scootie at school as I cannot walk large distances because I get so short of breath.
So why am I burning all these calories?
Well, My body seems to react in the opposite way when I’m on Pred. The drug seems to cause me to have a diminished appetite. and I actually prefer to eat things like salad to biscuits and cakes anyway. However I have a bad cough I have coughed constantly for about the last six or seven years and because I cough so much and my cough is always a productive one, I am burning up a great deal of energy and calories just coughing and producing sputum.
Have you ever wondered why severe COPDers are often very thin?
Well that’s me. That’s my lungs. That’s where I do fit the mould.
The steroids have also caused a degree of myopathy-muscle weakness and wasting, so my body has changed for the thinner not the fatter.
I wish it would all go away but of course it’s not going to. I’ve enjoyed eating more normally for 3 months, bit I’m looking pretty darn scrawny now.
And my dietician thinks I’m probably one of the people with a predisposition to high cholesterol unless I can stick to eating the right things. Hence the fact that I can’t just go back on my High Fat butter dairy ice cream regime.
We will test my cholesterol again in another 3 months after starting the new supplements. Hopefully I will gain and maintain a little weight. That in turn will improve my Lung Function and immunity to germs. I seem to have gone down with every bug going recently because I’ve just got no reserve.
….But first my Dietician has to write to my GP telling her all this, and that she’ll need to prescribe my supplements. I hope this happens without there being a spanner in the works!!….