Hello everyone. I have Bronchectasis and during last year I lost about a quarter of a stone in weight. I have tried really hard but have not been able to put it back on. The GP did some blood tests and have not found anything else that could be causing it. She tried me on some weight gain sachets that have not helped. I have read up about how Bronch can cause weight loss due to the lungs using up a lot of calories. It can cause muscle wastage, including in the lungs, making the lungs not work so well, possibly more chest infections and malnutrition. I have read the dietary advice online and am eating 6 times a day and including more fats but only just maintaining my weight at 7 stone. However, I have never been given any dietary advice with the Bronch diagnosis.
Having already had 2 chest infections this year, which is unusual for me I have asked the GP to refer me back to the respiratory dept as I have not been reviewed for 5 years. He asked me to have a chest XRay which says they have compared it with my previous one and there is no deterioration. As such the GP won't refer me to the hospital for weight loss alone. I don't particularly trust the Radiology dept as they misdiagnosed my condition twice. I don't think they can see it on an XRay anyway can they? My diagnosis finally came from a CT scan. He says he could refer me to a dietician but that will take a long time. So I am left with the only option of finding a dietician privately.
Does anyone have a similar issue with Bronch and weight Loss? Can anyone recommend a private dietician who specialises in Bronchiectasis as it is important to me that they are trained in the particular needs of the condition please? Any other suggestions or advice would be welcome also. Thank you in advance.
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gardeninglady
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I have fought all of my life with bronchiectasis to keep weight on. Doctors aren't interested beyond telling me off for not eating 'properly' or giving me vile milkshakes which don't work. I have recently been put on sprironolactone for my heart which has helped my heart breathlessness, stopped swelling in my ankles and miraculously reduced the amount of mucus in my lungs. But I have lost 7pounds! If anybody finds the answer please let me know.
They wouldn't refer me to pulmonary re-hab either as apparently I am not bad enough for that. I don't think I can answer your question as to if I am eating enough protein and carbs if no one tells me how much I am supposed to be eating. That gives me an idea though that I could ask my GP if we could ask the respiratory dept if they have any general dietary advice for Bronchiectasis, thank you.
I have had the same problem. I was diagnosed last May and am now on oxygen home therapy. I lost a stone because of a series of chest infections and not eating properly. I have read that apparently the weight loss is due to the fact that our lungs have to work twice as hard and everything we do takes an enormous amount of energy. I have also lost some muscle condition. I am waiting to go on a pulmonary rehabilitation course, which l am told helps a lot. Have you been put on a waiting list to attend one?
I initially lost weight and do from time to time but mainly my weight is stable. At the mo my weight is a few pounds heavier due to eating lots of chocolate 🙈and a decrease in my daily walking 🤗
Your GP may be well meaning (to give him/her the benefit of the doubt) but is not doing you any favours thinking he is serving you well. Not to be seen by respiratory team for 5 years is totally unacceptable. If I were you I would be checking out a good cf/pcd/bronchiectasis consultant online at a hospital you can access and explaining to them you understand they specialise in your condition and ask if they will accept a referral. When they agree your doc should then refer you. Please don’t take no for an answer. You should have no need to go private to see a dietician. There should be one within the team. Good luck.
I think alot of people with lung conditions have problems with their weight and am sure it must be down to using alot of calories to breathe and coughing. It could also be down to not having enough daily exercise building up muscles due to being short of breath. A rehab class might be a good place to start for you. Some people though just cant put the weight back on no matter what you do. I fed my Mum little and often which worked better for her, although her weight was always around 7 stone. I do hope you find a solution x
Thank you for posting. I’m afraid I don’t have any answers to your question though. Ive been diagnosed with mild/ borderline Bronchiectasis 3 years ago but not been seen by Respiratory or GP either. I’ve gone from 62kgs to 53kgs in this time & had no idea why. This could explain things so thank you. You will get lots of advice from other members.
This is a free download on the BLF website which may help. Otherwise try their helpline. Please take the advice above and demand a referral to a bronch specialist. Your GP is clearly under pressure not to refer people but that doesn’t help you.
Here are the free national guidelines for bronchiectasis; file:///H:/Downloads/BTS%20Guideline%20for%20Bronchiectasis%20in%20Adults%20(1).pdf
*** Referral to a specialist centre for investigation should be considered for young patients (usually considered to be age 50 and under but not limited to this age group) and those
with apparent idiopathic bronchiectasis especially where there is evidence of progressive disease. ****
It also says Airway clearance techniques should be taught by a respiratory physiotherapist.
and you should get a Bronchiectasis severity score...
So I agree 2 flare up and weight loss should mean a referral is sent.
Hi, I have bronchiectasis and recurring aspergillosis. I'm very thin (a bag of bones 😅😅). I've always been skinny but in the last few years have lost about one and a half stone. I know I have a really good appetite and eat loads so it's way down my list of worries but my specialist worries about it as he says it is a concern when I have any complications. He referred me to a dietician who advised me to eat more carbs and protein and less veg. She said to think of the plate as a capital letter Y with carbs and protein each side and veg in the small top bit. Also to eat lots of snacks in between meals. That was during lockdown and have followed this advice but have not put on any weight! However it may work for you - it's worth a try. Good luck and take care xxx
crumbs I dont think that the Y business was very good advice. Anyone pre-diabetic or diabetic would get far worse with all those carbs! SuggestSuggesting you eat fewer veg is also weird in this era of eating at least five per day. Very best wishes ××
PS to gardeninglady, regarding Pulmonary Rehabilitation course I was offered it right at the beginning of my lung woes, I was told that it was cost effective due to learning so much that I'd cost the NHS far less in the future which has happened. Weight, I'm about twenty pounds overweight I'd love to lose it because it's not healthy. Much higher risk of diabetes, stroke & heart attack when overweight. Good luck, at least you can enjoy cake!
I questioned that myself but she said that I would still be getting enough veg and the idea was to help increase my weight. She could probably see from my notes that I'm not diabetic and she knew I eat lots of fruit. My BMI is 15.7 which is what she was concentrating on. xxx
Ah no don't apologise - I didn't take offence in the least. I think it's harder if you're trying to lose weight as eating yummy food is such a pleasure. Kind people are always giving me yummy things to eat as I look like I don't eat enough (but truth is I eat loads!! 😅). Take care and look after yourself xxx
I have bronch, and my problem is losing weight. I used to be skinny, and didn't like it. Now I'm too fat in some places, and I don't like that either. However, now my joints are complaining about carrying all that fat around, I think skinny is preferable. Also, being fat makes you prone to contracting type 2 diabetes, which I have, borderline.
Weight loss is well described in long term lung conditions and is complex. You have some great suggestions already 1) Ask for referral to pulm rehab (esp if you are breathless scale 2 or on the mrc-dyspnoea-scale some centres only take score 3 or more which i"Do you have to walk slower than most people on the level? Do you have to stop after a mile or so (or after ¼ hour) on the level at your own pace?". Keeping muscle mass is important.
2) If you have had a few flare ups and not had a CT scan for a while you could ask if a repeat CT would help.
3) Sputum cultures for less common bugs such as NTM also helpful to rule things out that can cause flare ups and weight loss
4) referral to a dietician; knowledge is power; look up this where UK malnutrition awareness week was run from ; eatwellagewell.org.uk/aboutmaw
5) multiple mini meals often better ! My patients often tell me they dont like dairy (in excess) in their diets as their mucus gets stickier.. this might be useful to discuss with a dietician if they see you
Everytime I go for an appointment with the consultant I get weighed and at the tx clinic I got weighed several times so weight loss and/or gain is obviously important. I think your gp is like mine! (Admitted they don't always read consultants letters and they get confused!)
I was referred to a dietician. The main advice was drink lots of milky drinks - it was a bit of a waste of time, although she was very nice - it was the pulmonary rehabilitation team that got me an appointment, not the doctors! The doctors seem to think I have some sort of eating disorder!
I have recently read in the GOLD update, that people with weight loss, due to lung conditions, should have a very high protein diet. My son, who did a degree in sports science, had already told me that I'd only gain weight by eating high amounts of protein. I hope this helps.
I lost a stone as well with Bronchiectasis. I agree with Falcon that our lungs have to work much harder and everything we do takes much more energy, therefore burning more calories and then causing the fatigue. I don't mind having lost it because I was a stone overweight due to low thyroid which causes weight gain. I do follow a healthy diet, but now I can enjoy some sweets. 😊
You asked about private dietitians. The list of professionally registered dietitians can be accessed here: bda.uk.com/find-a-dietitian... . Wishing you all the best xx
I do have to laugh. 69 yrs of bronchiectasis. Doing absolutely everything that is suggested in this thread and still fighting to maintain my 6st 9Ibs let alone actually put weight on! Rather than lecture us on what to eat medics should be looking at our link to cf, ( which really must be there in a gene yet to be found). This could explain the inability of some of us to absorb nutrients.
Hi, I'm sorry you're having these issues and also not being cared for or referred on to get help. It's frustrating, I had to keep pushing for a dietician referral. As others have said she prescribed me drinks and said that was really it, but that also chest infections and Bronciectasis can impact appetite. I went from a slim 58kg with a bit of a belly to 50kg and looking gaunt. It's mostly muscle mass I've lost. I've got no bum and sitting us painful. It's horrible. People are quite happy to make comments and say "oooh you look so thin...you've lost more weight haven't you..." The drinks I've got are Fortisip Vegan (no dairy). They're ok, but seem to upset my stomach. So a bit counter productive. I did notice my appetite increased when I started a Zinc supplement.
I asked about Pulmonary rehab, not heard anything in months.
Do come back and let us know if you find a dietician and what they suggest. If that's no hassle. Wishing you all the very best.
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Weight Loss.
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