Marfan Weight Gain

Advice Trenna Got on How to Put Weight ON

Regular readers will know this, but…. although I mention several specific brands in this post I do NOT get any financial or other benefit from them. I name them just to help you understand what I’m talking about.

If you find this post useful or interesting you might want to check out three other posts: Marfan and Other Chronic Conditions – Things That Worked for Trenna; Things That Worked for Trenna -Part 2; and Marfan and Other Chronic Conditions – Things That Worked for Trenna – Part 3 .

Marfan People are Different

It’s fair to say that for the majority of people in developed countries they don’t have ANY trouble putting on weight.

However, that is not the case for everyone. Some people really struggle to put on weight – among those people are those who have Marfan Syndrome.

In Trenna’s last half dozen years doctors in hospitals were urging her to put on weight. When she would get sick she had no “stores” to call upon.

In one visit to Fremantle Hospital we were horrified – we were both mortified – when a dietician examined Trenna and said she was malnourished! I felt terrible that I was a bit overweight and my wife was apparently being starved.

We had always had a very varied and healthy diet so we consoled ourselves by assuming that the dietician had performed some test that just didn’t apply to people with Marfan Syndrome. I hope that is what it was.

Nevertheless, Trenna and I knew that she would be better off if she could put on some weight.

Dieticians Know Stuff

We got some dietary advice on that ‘visit’ to Freo Hospital but also got a referral to Bentley Hospital, not too far from where we live, to see another dietician. Much of the information in this post comes from Jasmine who advised us during that appointment.

As Trenna was a recipient of a National Disability Insurance Scheme (NDIS) Plan we were also able to access a dietitian through the NDIS, and a speech therapist for assistance with swallowing issues.

When I was more naïve, and before I worked in aged care, I imagined that a dietician’s main work was to help people loose weight, and to recommend unpalatable meals in hospitals. But in fact a great deal of their work is helping people to put on weight.

If you can get access to a dietician it is well worth it.

What We Found Out

First of all, I want to make a couple of points. Firstly, and hopefully most obvious, this is advice on how to put on weight, including consuming extra saturated fats (and other yummy things!) which for many people should only be taken in small quantities.

So the second quick point is to get some advice from a doctor and/or dietician so you are consuming what is good for your particular situation. The ‘advice’ that follows is mainly stuff that has been suggested to us by qualified, university trained dieticians and I haven’t gone and separately verified the advice.

Medical Supply Stores

Be aware that there are quite a few supplements specifically designed to help people add weight. We found the best range could be found at medical supply stores. I opened an account with Surgical House. I would just fill out an order online and the next day it was delivered. I’m sure there are similar stores all over the world.

And, as it related to Trenna’s disability, the NDIS would reimburse the cost. It is SUCH a good scheme when it works!

If you or your loved one have some sort of disability or chronic illness you really need to get to know your local medical supply store. There is some great stuff in them.

Things You Can Do To Add Weight

• The supplements I just mentioned. We used “Ensure“. You mix the Ensure powder with water to make a flavoured, energy rich milkshake.
  However, if you make it with full cream milk instead of water it is much more calorific. For even more calories, stir in a spoon or two of skim milk powder.
  The flavour of these drinks isn’t fabulous, but it isn’t too bad. You might like it! Sustagen is a similar product.
• Another way to drink your calories is via premixed calorie rich drinks. We were recommended Fresubin 2 kcal. It comes in a range of flavours and they really jam the calories/kilojoules into those 200ml bottles. Having these between meals adds quite a bit of energy to your diet. And maybe when you were going to have a water, have one of these instead.
  I believe Fresubin do other drinks that aren’t “2 kcal” but they have half as much energy in them.
  There are other brands too. Some energy rich drinks appear to be more like fruit juices than milky drinks.
• There is a neutral flavoured Sustagen that you can mix a spoon or more of into currys, stews, soups or other dishes to get an added dose of calories. We never tried it, but we got that advice from a couple of different dieticians.
• Whilst on the topic of Sustagen, there is a “Hospital Formula” version that packs a bigger energy punch than the standard one.
• One tip we did use was moving to 2 or 3 star minced meat. Australian supermarkets grade pre-packaged mince from 1 to 5 stars. I don’t think I’ve ever seen 1 star mince but that would have the most fat content, whereas 5 star mince is meant to be very lean.
  Before getting this advice Trenna and I only bought the 4 or 5 star product. Afterwards we started using 3 star mince. It tastes better too!
• Don’t skip the desserts and afternoon tea. If you want to put on weight you have to work at it! Cakes or biscuits (cookies) with afternoon tea (and morning tea for that matter). Desserts with custard and cream in the evening. On this note, don’t forget the Trenna Approved Lemon Meringue Pie and Cream Diet described later.
• If you aren’t hungry at some point, have an energy dense drink instead.
• Feel free to snack – some cheese and crackers, or maybe better still – nuts are very energy dense. Have a handful of those at afternoon tea.
• Yogurt is good, and you can get more calories into it by mixing in a spoon or two of skim milk powder or Sustagen. Nuts on your yogurt give it a further kilojoule kick.
• Soups with pasta and meat in them are good. They can have vegies in them too, but that is less important.
• When (if) you have potato and meat meals drizzle a bit of olive oil on the spuds.
• When making a sandwich for lunch consider making a meat sandwich with butter, mayonnaise and cheese.
• Evening meals should mainly be meat and carbohydrates. And don’t forget the butter, sour cream, olive oil and sprinkle it with grated cheese!
• Of course, you can add sugar (or more sugar) to tea or coffee, but Trenna thought tea and coffee consumption was too important a lifestyle issue to muck about with!

Worthy of It’s Own Section – The Lemon Meringue Pie and Cream Diet

And finally the tip which both Trenna and I agree did her the most good – The Lemon Méringue Pie and Cream Diet. Here’s how the diet works.

Buy a packet of frozen, individual lemon meringue pies. Actually buy two packets because you use 1 pie per day.

After dinner or whenever you want put one in a preheated oven and heat as directed. Serve up in a bowl with thick dollop cream, lots of it. Don’t spoil your good work now, you’re at home, noone’s watching! Put a bit more cream on.

I would prepare this dessert for Trenna every night and I would use a 200ml tub of cream every 2 days, so 100ml (about 3½ fluid ounces) per serve.

The cream is important because it is so calorie dense, but also because it cuts down on the acidity of the lemon. It is a fairly painless, but effective way of putting on weight.

Make Like Trenna – Keep Records

My final bit or advice is about keeping track of your weight. Trenna used her iPad and kept a record every time she weighed herself. A few times when we were seeing a new specialist, or being admitted to hospital discussion would turn to Trenna’s weight and the doctors were ALWAYS way impressed when Trenna would open her iPhone and give comprehensive weight trend data!

I suspect there is another benefit too. Research has shown that people who weigh themselves daily tend to be more successful in loosing weight if that is their goal. I’m not suggesting a causal link, but I suspect that a daily reminder about your weight helps you to stay on the job. My theory is that that would work equally as well for people trying to put on the pounds/kilos.

BTW, if you need to loose weight do the opposite of everything I’ve just suggested! Except, do weigh yourself daily.

Good Luck!

If you found this post useful or interesting you might want to check out three other posts: Marfan and Other Chronic Conditions – Things That Worked for Trenna; Things That Worked for Trenna -Part 2; and Marfan and Other Chronic Conditions – Things That Worked for Trenna – Part 3.