Eating Low salt while abroad with dilated cardiomyopathy

[bouncingsouls]

Iam very early into my journey with Dilated cardiomyopathy and HF at 39 yrs old

we already have trips abroad booked, New York in May to celebrate our 40ths and Thailand at Xmas, so this diagnosis is a spanner in the works.

I was just wondering in regards to the reduced salt intake and diet, how strict does this have to be? As trying to eat out on New York and Thailand will be very difficult to follow a low salt intake.

Iam not talking about going crazy on salt, just wondering if an increased intake and a poorer diet for 1 week or 2 weeks is majorly impactful.

Also regarding alcohol can you drink 0.5% alcohol free drinks with cardiomyopathy?

Iam yet to have any meetings with the cardiac nurse team, and the cardiologist in the hospital wasn’t very good at communicating so a little bit on my own for a few weeks until first nurse appointment.

Nobody in the hospital even mentioned to be on low salt, all the meals there were Mac and cheese, sandwiches etc.

Many thanks

[Blearyeyed]

Although it's important to treat yourself on a holiday it's actually even more important to keep mainly to your healthy well balanced diet , portion control, and alcohol reduction and make sensible meals choices depending on your medical needs.Things like keeping to eating less salt and sugar , and still avoiding alcohol with cardiomyopathy are important to keep up , I'm afraid , because a holiday , although fantastic involves a lot of Physical and Mental Stress , even if it's really fun things that are causing it. Stress , people often forget , isn't just a bad thing!

Adding heavy restaurant meals or too many snacks and alcohol in the mix on top of all the extra exertion can be the straw that breaks the camels back and sends you in for a quick spell in the Emergency Room with chest pains from various symptoms, including indigestion and GERD.

You might have heard of "Holiday Heart Syndrome" at Christmas.

This is when people suffer from a heart event or increase in their cardiac symptoms that require medical support because of the perfect storm of over exertion and over indulgence being just too much at once for your system to cope with at it's current health level.

Well , the same can occur on a holiday at home or abroad for the same reasons.

It's why it's important to try and treat yourself and enjoy your holiday activities but still to keep some balance in your behaviour including rest breaks not just non stop sightseeing , and , to managing your menu options to reduce those post feasting fainting spells and nausea.

That doesn't stop you having fun , quite the contrary, it allows you to keep the fun going everyday without having to miss out because of needing a day sick in bed , whether that's in hospital or otherwise.

So , make similar choices to those you have at home.

Have smaller portions , especially in the US.

Ditch the carbs for a salad or veg or the chips for a jacket spud.

Let restaurants know that you are on a low salt diet and ask them not to put added salt in your food.

Avoid big meals and those dishes that are obviously full of salt , sugar and too much fat.

Have a spoon of someone else's Mac and Cheese if you are tempted but go for a chargrill meat or fish with veggies for you meal instead.

All US menus have lighter options and they are used to leaving stuff off or putting it " on the side".

Give up on the dessert with the meal so that you aren't overfull and have a small sweet snack while out and about instead.

Take care in Thailand to read the ingredients or find out about the ingredients in certain dishes before you go so you can avoid ones higher in salt or sugar from added things like soya and fish sauce or palm sugar and syrups.

Avoid dishes that are filled with ingredients that aren't right for you or ask if they can leave out certain things to make it healthier for you.

You could always have a little taste of someone else's or have a sharing menu with a few interesting dishes that you could have a small taste of and a wide selection of steamed foods , fish and veggie dishes with less sauce to lighten your load.

Take care of where you choose to eat from in both countries, as a stint of food poisoning or diarrhea from a dodgy restaurant or street food vendor isn't t just horrible in itself it could also be a trigger for a cardiac event.

Also help reduce the effect of the more strenuous and more negative stress of travel to reduce the burden on your body too with these extra tips.

Take care to keep a water bottle with you at all times and drink as you go , take rest breaks regularly, have quiet days before and after your travelling day , and get help with bags and packing , including getting airport assistance if required.

Make sure you know the rules about how you need to package any medications and devices to get through customs , on board meds to take as you travel may still need to be in original smaller size bottles and it is better to have a week's extra supply than the length of your trip in case of delays.

It can also be handy to have a full list of your meds and conditions and doctors names printed off on official paper from your surgery to confirm you need for meds , but also let your fellow travellers know where you keep it and take it out with you folded in your day bag just in case you do have an emergency and your companions need to speak to a doctor on your behalf.

If you are doing car hire give the responsibility of driving to someone else on your trip and just apologise that you can't take a turn, as adding driving stress in a new place on top of extra activity and meals could tip the balance as well. Rest on the drive instead.

Have a " on the go " mini OTC travel med kit with you at all times just in case you do find symptoms increase, or you may have a little indigestion , diarrhea , an allergy reaction or a headache, and don't forget the sunscreen.

Don't forget , alcohol free and sensible eating doesn't mean fun free, the fun comes from the experiences and memories you make along the way not the "all you can eat' buffets and big bar bill.

Have a great trip , Bee

[bouncingsouls in reply to Blearyeyed]

Thanks very much bee, for your detailed response.

Lots of sound advice, I guess when we travel just have to be hyper aware of what Iam eating and take all the precautions we can.

Thanks

[devonian186]

Good advice below from Bee. Reading your post it sounds as if you have had tests recently but no follow up. Have you arranged travel insurance on that basis?

[bouncingsouls in reply to devonian186]

Yes just newly diagnosed and not started any follow up appointments yet, have my first cardiac nurse appointment in 2 weeks time.

The trips were booked long before, this HF came to light, so we had initial travel insurance coverage for cancellation etc with our Amex card, but I am yet to open a new policy with another provider to now cover us for my medical conditions, looking quite pricey for that.

[Jeremyrunicles]

Hi there,

I was 44 when i got ill. I also have DCM, I had severe heart faliure ef 24%. Now 43% after 11 months.

I have tried to keep to 3g of salt instead of the 6g adult allowance a day. This has been easy for me as i eat quite healthily anyway.

Alcohol - I used to drink 2 pints each day after work and more at weekends. My cardiologists and cardiac nurse just told me to keep to the recommended guidelines for adults. So 14 units a week. I have done this also. Where there was a big celebration I have had up to 25 units probably 10 times in a year.

I guess we are all different, and what works for one may not work for others as well. I'm slim, don't smoke and have been previously fit and healthy. I was encouraged to walk as much as i felt able, and rest when I needed to.

I have also done a lot with diet and supplements to support the heaet muscle recovery and help build my immune system as my cardiomyopathy was due to infection. I did a lot of research my self and also went to see a very good national expert. Worth the money if you can afford to. We only get one heart so worth the investment I thought.

I have tried to walk at least 5 miles a day, unless it's terrible weather of course. I've kept going to the gym three times a week. Just less weight. I was given a max weight and heart rate to get up to by the rehab team.

The excersise has helped mentally as well as physically.

Generally i have been ok, the first few months were worrying, but there is lots of help on here if you have questions.

I travel several times a year, and I have used All clear travel insurance. My policy was approx £500 for the year including winter sports. I had also had left bundle branch block, and severe mitral valve regurgitation due to the cardiomyopathy. So maybe your will he less.

It's worth being cautious for the start of your journey. It's better to be safe than sorry.

I've always been told to try and keep to the 2litres of liquid a day rule. Overloading your body with liquid will put extra strain on your heart. But depending on your level of hf you may already have had different advice. The salt reduction is to stop moisture retention in your body as the salt absorbs moisture. So the less salt inside you the better. Having said that we do need some. So be mindul of that. I was surprised at the things which have salt in, like yoghurt. (Which is also considered a liquid).

I had been sent to Papworth for a transplant assessment as I was quite poorly for a few months. Luckily they have said they hope to never see me again now. (In a nice way).

If i get symptoms, I have a drug called ferusemide to take. This relives the fluid in my body, and always seems to so the trick.

Good luck with your journey. And as several of the experiend guys on here say "it's a marathon, not a sprint". That is the best advice I've heard on here. So please try and remember that as it will help physically, and mentaly.

[bouncingsouls in reply to Jeremyrunicles]

Thanks for your detailed reply.

It’s quite hard to get your head around the life adjustments, especially the social aspect of it, as I am used to having beers on a Friday and Saturday.

the cardiologist did say that if they can’t find out what caused my DCM (still looking at genetics) then cutting alcohol completely might be best as they don’t know if that could have been a trigger.

The day to day salt intake will hopefully be manageable, it’s just the eating out aspect of it when away on holidays that Iam panicking about, my dreams of nyc pizza and street food seem to be over.

Iam glad your EF has improved, that’s great news.

I work as a joiner, so hoping I can continue on doing that, will just have to see how it goes.

Many thanks

[Laurap18]

Honestly when I am on holiday and I eat out a lot more, I don't care too much about the salt. Obviously, I avoid eating chips at every meal, but if I want chips a few times I get them. I usually also drink a little more, I am not talking about alcohol but drinks in general. I should limit my fluids to 1.5l per day, but on holiday I drink more. I have never have any issues. The only thing is that I feel a little more bloated than usual, but not extremely and after one day at home the bloating is gone. About the alcohol, you should ask your doctor. I can drink in moderation, ma cardiologist told me it's fine. So be mindful, but try to enjoy your holiday too

[bouncingsouls in reply to Laurap18]

Thanks very much for taking the time to reply.

it sounds like you have discovered a nice happy medium that works for you with regards to food and drink whilst travelling.

Hopefully I can too,

I suppose I will have to wait and see what the cardiac nurses say at my first session, was a little disillusioned leaving the hospital with regards to eating as they had told me nothing when I was discharged after my diagnosis

[Thanksnhs]

Hi it seems people are told different things by their cardiac teams, I had arrythmogenic cardiomyopathy but originally my team thought it was dilated cardiomyopathy and severe heart failure, I holidayed abroad a lot before lockdown hit but only in Europe. My team told me and they still do, to stick to the units of alcohol that are recommended by the government 14 units per week, salt wasn't mentioned much either but I know it's sensible to keep it as low as possible which I do try and keep to. I was led to believe just to eat sensibly but not to deprive yourself of treats just not to go daft 🎂😅🥂. insurance is another thing, if you have already taken it out you will have to tell them about your condition, I never had any trouble getting covered for europe all be it more expensive. I hope you have a brilliant time take care char

[Shar28]

Firstly, I’d say to follow the advice given by your medical team. My husband has DCM, EF just 10-15% on diagnosis. With meds and then having his aortic valve replaced his EF is 66%. It’s taken a few years to get there, but he puts it down to taking Ubiquinol (which his cardiologist and GP are happy for him to do as its not causing any harm)

He wasn't actually given much advice about diet. We eat pretty healthily and I never add salt to anything I cook anyway so that isn't as issue for him. He’s always had a low fat diet too. His arteries were crystal clear on an angiogram so the Drs just said to carry on with what he was doing

In respect of alcohol he was told to stay with government guidelines. Now he actually drinks (& enjoys) Heineken 0% most of the time.

With fluids he was initially restricted to something like 1.5L per day but then his blood tests showed he was “too dry” so they just said drink normally.

The best advice he was given by one of the doctors was that life is for living, so live it, just with some moderation and common sense. It sounds like thats what you're doing too with your holidays. So have fun and enjoy.

By the way, have you discovered the Cardiomyopathy UK website? Its really useful and their nurse helpline is fantastic

Best wishes to you and your loved ones