Lung Conditions Community Forum

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Weight loss with emphysema

Morning all - hope everyone's good or as good as possible.

I seem to have started to lose weight. Doesn't matter how much extra I eat I still stay same weight whereas before I would put it on if I ate extra. My BMI isnt out of normal range yet but Ive always understood we should not let our BMI slip too low.

My question is: does this mean the emphysema is progressing more? Interested to learn some of the experiences of those of you with primarily emphysema (rather than chronic bronchitis which doesnt seem to have the same problem).

And second question: how can I put on weight? Any tips welcome!

Ive had a pretty good run, having been dxd at mid-moderate state in 2000, and having managed to continue living a good life. But maybe this is just what eventually happens.

Wishing everyone a good weekend, jean xx

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O2Trees

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78 Replies

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CDPO1620 days ago

Hi Jean, I have stage 4 emphysema and have been underweight for years. My appetite is very poor but when I can eat reasonably well I fail to gain any weight at all. I have dietary supplements via the dietitian but their team have given up on trying to get my weight up although they still check on me now and then. I think that it is part and parcel of advanced lung disease, it certainly is for me. Carole x

O2Trees in reply to CDPO1620 days ago

Thanks Carole - I know this may come at some point. Just not ready for it yet. I am seeing a dietitian in June I think. Some recommendations on weight gain without eating multiple carbs which will put my blood sugar up would be very welcome. You take care xx

CDPO16 in reply to O2Trees20 days ago

My dietitians used to push me to eat a high fat diet which I wasn't keen on. I also found that some of them had a poor understanding of lung disease. The latest one to see me just accepts things as they are for which I am very grateful. I hope you fare well when you see one. Best wishes xx

O2Trees in reply to CDPO1620 days ago

Thank you Carole x

JJ_720 days ago

Hi O2. My favourite method of putting on weight is to eat more and move less. I also compete in the triathalon.....sitting ,eating, and watching. I have no problems gaining weight but the converse is a problem.

If you are concerned about your weight loss there could numerous reasons for this. I think you should get a checkup with your GP to rule out any health complication.

Good luck O2 JJ xx

O2Trees in reply to JJ_720 days ago

I am seeing my GP, JJ7. She is asking my consultant for an endoscopy in case anything problematic in my stomach or oesophagus. I have Barretts so we'll see. Not usual for it to progress so we'll see. All best x

Jaybird19 in reply to O2Trees18 days ago

i lost weight steadily from feb 22. i was over weight but couldnt change it . in sepyt i had an emrgency strangulating hernia . asked dr if that was cause but thought not but since then my weight stabilsed and now 6 minhs later is creeping up slowly ,. porbably no coneection but now having to taen in all my trousers as thet fall down if not secured by elt , i do hope that i do not end up by letting them all out again . nothing fits fron the waist down . but i am 85 and my arms are now thin and my legs the same > After being well _pear shaped for many years , i think it is muscle loss . cannot do what i did more than 6 months ago and have to recover my mobility after no more than about 12/13 days in bed on drip and catheter with nil by mouth 2 months later with gut blocked .and NIL by mouth. Is muscle wastage cause or effect of weight loss ? in 6 months i lost 10 kilos .

O2Trees in reply to Jaybird1915 days ago

A strangulating hernia sounds awful Jaybird - so sorry you've had to deal with that. And 10k in 6 months is a lot to lose. Im 77 and my arms and legs are stick thin but I have a large stomach. I try to avoid muscle wasting by doing weight lifting exercises - that seems relatively successful and I can lift quite heavy things in the garden etc.

I hope you can get your mobility back. Good luck with that

sassy5920 days ago

Can’t really answer your question Jean but hoping someone can help. Two great replies so far. Take care dear friend. Xxx❤️

O2Trees in reply to sassy5920 days ago

Lovely to hear from you Carole. Im having an endoscopy I think, assuming my con agrees. At the moment I wouldnt care if I never ate again !! Hope you and Pete are ok, sending love xxx

sassy59 in reply to O2Trees20 days ago

Bless you Jean, good luck with everything. We’re fine thank you and I’m thinking of you. Wishing you well.

Love, Carole xxxx❤️

hypercat54 in reply to O2Trees20 days ago

I think some people who are naturally slim anyway tend to lose weight as they age, so it could be that and not your disease. I hope so anyway as I hope you have many good years left in you yet.

My mother didn't have anything serious like you but she lost weight as she aged. Mind you she made 90 at just 5 stone! xx

hypercat54 in reply to O2Trees20 days ago

Oh yes meant to say as well there are some build up drinks which are high in calories. The only one my mother liked was Ensure and it had a huge range of flavours. Maybe ask to try one?

O2Trees in reply to hypercat5418 days ago

Im a bit dubious about those build-up drinks, Bev, but I may have the wrong idea about them. I hate sweetness since Ive given up sugar/added sugar, and wonder if they are sweetened. We'll see - Im sure the dietician will be suggesting something like that so I dont want to be negative about it. Your mum did well to make 90. x

Donald_193120 days ago

I've been wondering recently why I'm so fat at my age (well plump anyway). All of the people I know of my age are as thin as rakes, not that there are many left. I can't say it worries me in the least but my Diabetic Nurse frowns every time I get off the scales. She never remarks on it because she knows my solution if she did would be to stop getting on scales. 😉

O2Trees in reply to Donald_193120 days ago

Im sure you could write a good poem about that Don I'll watch out for one

cindyching in reply to Donald_193120 days ago

Hello Don, at your age you should not lose weight. A chubby face makes your face look wrinkle free 😊

leo60 in reply to cindyching18 days ago

I had a very fat "moon face" when I was taking a lot of prednisolone. Now I'm not, my face has gone back to normal, but I've got wrinkles! Nothing to do with age, they were caused by the steroids!! 😂😂 xx

cindyching in reply to leo6018 days ago

I can't believe I don't know anything about such an important information!🤗xx

Patk1 in reply to Donald_193120 days ago

😂😁keep doing as you are Donald, it's working x

Nula220 days ago

Hi Jean, I have a very low BMI (15.7) and was referred to a dietitian by my specialist. Although I haven't put on any weight (although weight is stable) it might help you. I have a very good appetite so that isn't the problem with me. But as your appetite isn't great it may be of more benefit to you. They can recommend supplementary drinks and advise on the best foods to eat to help you put on weight. Good luck and take care 🙂

O2Trees in reply to Nula220 days ago

Glad you have a good appetite at least Nula. As I now have prediabetes it can be hard working out what foods to eat. Im seeing a dietitian next month so hoping (s)he will be able to fix me. All best to you. x

Nula2 in reply to O2Trees20 days ago

Ah it's good your seeing dietitian, hope it helps. Be lovely if they can help you get your appetite back in some way. Must be so hard if you don't fancy anything to eat. xxxx

Blackbird920 days ago

Hi Jean ...Just to say I'm stage 4 copd and if anything have put weight on even though I'm walking daily ... I think with me it's muscles on my legs because everywhere else is very round 😂😂😂

O2Trees in reply to Blackbird920 days ago

You walk so far, BB - always amazes me that you can still do so with S4 copd. How long have you been S4? You're quite an inspiration. How are you doing now? Ive been thinking about you and the loss of dear Stan. He was lucky to have such a loving human, guess you were lucky to have each other xxx

Blackbird9 in reply to O2Trees16 days ago

I have been stage 4 for 7 years now .. thankyou so very much that means a lot ... Things are still very raw we brought his ashes home yesterday along with his paw prints 🐾 and a few locks of the soft downy hair that surrounded the top of his ears... it' was his favourite place to be scratched ... 🥰

leo60 in reply to Blackbird918 days ago

Stage 4? Gosh you do so well! xx

Blackbird9 in reply to leo6016 days ago

Thankyou yes for about 7 years now ...I think the walking helps a lot 🩷

O2Trees in reply to Blackbird916 days ago

I'm sure the walking is doing loads to help. I could walk more from the point of view of the breathing, but I have what feels like a steel band around my chest at bra level and am always breathing against that which is exhausting. But Ive always said that exercise is key, and you are the living proof BB! xx 😘

Blackbird9 in reply to O2Trees15 days ago

Slow and easy ...that's me I have never been one for running shoes unless I really have to then it's grab the ventolin which I have on me all the time ...Have you had the pain checked out? is it muscles working to hard for you maybe ?

The bra line is something I used to get really annoyed with when I wore a bra ... easiest solution gave up wearing them and just have vest tops now ... my bras were never comfortable even though I was measured and fitted ..I hated them .🙈🙈

Maybe get some of those drinks fortisip and the likes or a complan drink ... eat porridge 😋 ...have you always been a slim lady ... I was built quite tiny at just under 5 ft and around 7 stone till I had my children and went on from there... I'm around 72 kgs ..probably 82 kg more like 😂😂

O2Trees in reply to Blackbird915 days ago

Nobody seems to know about the discomfort/pain (the extent varies) on my ribs but I think its connected with my being barrel-chested which ppl with emphysema can get. Its a distortion of your torso due to hyperinflation and the lungs being much bigger than they should be.

Wow, I would love to be 72k - Im currently 56k and 5'5" but Im still within BMI range. It's just that Im concerned that I will lose more. I can see from replies here that many already have got low BMIs. I assume mine will go lower but maybe not, who knows?

I eat porridge, jumbo oats with a whole host of other ingredients. Ive always seen my food as medicine. Im really not sure about these drinks like Fortisip. Are they quite sweet? I dont really like that and it doesnt work when you have diabetic concerns. Plus I dont like the taste of artificial sweeteners. But I see that those drinks have helped people here so I wont close my mind to that possibility.

Hope you're having a good day BB. You must miss Stan so much. You take care

Blackbird9 in reply to O2Trees15 days ago

I envy envy you .... I would adore to be 56 kgs and 5ft 5 .. I would swish about town like a lady ..instead I'm borderline oompah loompah never mind by BMI which is probably over and above any normal range .. we are never happy or content with ourselves...its like curly hair want straight hair... and straight haired ppl get perms 😂😂....

My beautiful boy is missed terribly but in a good way due to our memories of him ...

He will be forever missed..... we cry when we need to not holding any back ... things might not get easy for a long time ... we will learn to cope 🩷🩷

O2Trees in reply to Blackbird914 days ago

Aw - I feel for you. So hard.

Blackbird9 in reply to O2Trees14 days ago

Thankyou so much 🩷

clematis593220 days ago

I started losing weight in 2014 had many tests to find the cause. I was then seen by a professor at Birmingham Chest Hospital who told me it was due to the Emphysema, I have seen four dieticians over the years all giving the same advise eat as normal but add olive oil or butter to anything that you can, graze throughout the day make yourself snacks to eat during the day, first thing in the morning as you will be lest tempted to avoid food if it already prepared for you in advance. I also have three Forti juices a day drunk straight from the fridge as the taste then is ok for me. My weight at the moment is six stone four with a height of 4foot 11inches. Each time i have either a infection or exacerbation I lose weight which I then have to try to put back on again. For me it is simple I have to work so hard to breathe that it uses up more calories than i can eat. Everything that my daughter can not eat as she is dieting I have to eat to stay well. I am now stage 4 but have had ththis weight problem since being diagnosed. I should also add that I had Asthma for 40 years that does not affect weight.

O2Trees in reply to clematis593218 days ago

So hard isnt it? You lose weight with infections, then the effort of breathing makes it hard to regain it. I need more grazing like you say but don't really have any motivation for it. I do eat loads of olive oil though, and some butter. I do actually manage to make my breakfast which is very fat laden with loads of nuts and plain yoghurt, that FAGE one which has cream added.

knitter20 days ago

no thyroid symptoms ?

I lost weight when my thyroid went haywire ….even though eating more than usual .

O2Trees in reply to knitter18 days ago

I thought people with over active thyroid lost weight, and those with under active gained weight but maybe that's too simplistic. I hope you're sorted now knitter

PaulineHM19 days ago

Hello 02Trees,

What a concern for you ? So pleased to read that you are addressing this weight issue for yourself.

For sure difficult breathing for us uses a great deal of energy, I do know that and as you are aware some weight loss in advanced lung disease is possible- deep joy eh ? .

Until you can have the endoscopy and see the dietician I wonder if it is worth having a word re dietary supplements with your friendly pharmacist or even the Asthma Lung U.K. helpline… they may have a few nuggets of gold to offer you.

Do let us know how you get on pls.

Go well.

Pauline

O2Trees in reply to PaulineHM18 days ago

Hi Pauline, I might give the helpline a call, good suggestion. Havent spoken to the pharmacist, partly as Im suspicious of commercial products but I will probably have to consider them. My consultant has to agree the endoscopy which I want but also dread as they are so horrid, but I need the info. You take care

PaulineHM in reply to O2Trees18 days ago

02Trees, wish you well in your quest for an answer.

Endoscopy….yes I knoooow..the most recent one I had, they sedated me (briefly ) long enough to get the tube down, have a look and extract it. Apparently I was very resistant, but of course don’t recall it all ! Heavenly. Was my old self after a couple of hours, but then we are all very individual aren't we ?

Go well.

O2Trees in reply to PaulineHM18 days ago

Glad you got yours over with Pauline. I havent had one for about 5 years at least. I have Barretts but have been told they dont monitor it any more. But I think I need one. Will let you know

PaulineHM in reply to O2Trees17 days ago

Yes 02Trees, as uncomfortable as they are I hope you get an endoscopy to have a look see what is occurring for you. Hopefully they won’t find anything ! Yes do let us know how you get on. Wishing you well.

Pauline

Ergendl19 days ago

Here is a link to the diet fact sheet for lung diseases on the British Dietetic Association website: bda.uk.com/uploads/assets/5...

Hope this helps. All the best.

O2Trees in reply to Ergendl18 days ago

Thanks Ergendl - that's really helpful

Corin195019 days ago

hi O2Trees

My husband became increasingly thin as the emphysema progressed and as he lost his appetite too.

As well as the usual advice of eating build up drinks and adding full fat products I think it is good to add healthy nutrient dense high calorie foods like nuts and seeds, olive oil, high cocoa (70%+) dark chocolate. Also good to eat some fresh vegetables and fruit each day for micronutrients and fibre as latest research on diet shows a strong, healthy gut impacts on all areas of health. There are so many varieties of nuts and seeds and all beneficial in their natural state and unsalted.

All the best

Corin

O2Trees in reply to Corin195018 days ago

Hi Corin, yes I have all those foods you mention, except chocolate with sugar in it. I have cacoa powder mixed with chia seeds to make a pudding, chia seeds being very high fat. Loads of o/g unsalted nuts with my porridge. And ground flaxseeds, 15gm, with my porridge plus lots of veg, so plenty of fibre. Fibre being essential for [pre]diabetes. Thanks for your reply.

watergazer19 days ago

Wishing you well O2Trees. Hope the dietitian can help x

O2Trees in reply to watergazer18 days ago

Thanks watergazer x

Izb119 days ago

As if we dont have enough to deal with O2, it seems we have a constant battle on our hands. I do hope the dietician can help and that your test results come back normal, its always a worry . I used to make milkshakes for my mum with banana and icecream using guernsey milk, she loved them and was easy for her when she couldnt eat x

O2Trees in reply to Izb118 days ago

I would love to make a shake like that Izb1, but it would send my blood sugar through the roof. That's the difficulty - fatty stuff is good but there's a limit to how many avocados you can eat in a day! If I could eat carbs it would be easier - I love icecream, cakes etc, But thanks for your suggestion x

Izb1 in reply to O2Trees18 days ago

Sorry O2 didnt realise you had so many problems with what food you can eat x

Biker8819 days ago

Hi Jean, I have Aspergillosis and emphysema and was diagnosed with disease based malnutrition after loosing a lot of weight. Since I have been under a hospital dietitian my weight has just crept back to a just acceptable BMI. I’m following an NHS weight gain diet which basically means eat what I want with added calories such as milkshakes with powdered milk added. The dietitian said if it’s labelled “healthy”, low fat etc don’t touch it as these are all aimed at weight loss. My supplements are, 125ml Ensure compact twice a day (each 125ml is 300 cal.) and 3 x 40ml Calagen a day this is another few hundred calories. Problems with my oesophagus haven’t helped but hopefully this problem has been recently resolved

O2Trees in reply to Biker8818 days ago

Yes get that about the oesophagus - I have reflux and have had awful choking especially on eating milk and cheese. So much is aimed at people wanting to lose weight which is frustrating for those of us who want to put it on. And there are a lot of us. Im glad your BMI has got better.

2013mayo19 days ago

hi,

I’ve tried to put on weight, nothing seems to help, I’m under supervision from a dietician and drink supplements but it’s not working. My bmi is 17.05, it’s been getting lower and lower over the years, I eat anything and everything now, it seems I never stop eating and I am always hungry but it makes no difference. And if you end up in hospital for whatever reason you lose weight.

Just try to eat more, its difficult at first but the more you eat the more you want to eat.

O2Trees in reply to 2013mayo18 days ago

Sorry to hear your bmi is so problematic - at least it's good you are able to eat but shame it doesnt help your weight. I lost about 6 pounds with double pneumonia in 2018, two admissions, same each time. But I was able to put the weight back on. But not now it seems. Im sending a prayer to the universe that you do manage to put on a pound or two. Take care.

2013mayo in reply to O2Trees18 days ago

thank you, I will also pray for all our health.

CDPO16 in reply to 2013mayo18 days ago

I envy you your appetite. I hover around 6st in weight but never feel hungry and force myself to eat but don't enjoy it. Years ago I used to love my food. Damned lung disease!

peege19 days ago

Hiya, just to say that I sympathise with your plight. I know you have reflux so the usual weight enhancing foods like butter, cream, full fat milk etc are are probably out for you. I'm wondering about eating more good fats like nuts, seeds, avocado, extra virgin olive oil...... are you okay with high sugar fruit like bananas, mango? wish I could help. It's a flipping pain so l'm thinking of you, love P

O2Trees in reply to peege19 days ago

Ah thank you P. Several here are suggesting things to eat - all sensible suggestions but there is a lot I am not able to eat. The main thing causing the difficulty is being prediabetic - steroid induced, which is hard to reverse unlike some Type 2 diabetes. Carbs are out, as is high sugar fruit, definitely out, sadly. I can do some high fat stuff but not too much. Also some protein like red meat, and especially liver which I used to love, I can no longer eat due to diagnosis of haemochromatosis - genetic iron overload condition caused by both parents having a defective gene. So cant have stuff like alcohol, or those meats as they are what is called "iron enhancers" allowing excess iron to be laid down in important organs, liver, heart, pancreas (often causing T1 diabetes). Im sure on a good day I could write a comedy about this though at present Im kind of despairing about what to eat.

I do eat loads of nuts and seeds, avocado, extra virgin OO, two eggs each day, but without managing to put on weight, and this has happened quite suddenly.

Anyway sweet of you to be in touch and I hope your health is ok at present. Sending love to you xxx

CDPO16 in reply to O2Trees18 days ago

Gosh Jean, I hadn't realised that you were so restricted in what you can eat. I hope a dietitian can give you some good, helpful advice xx

O2Trees in reply to CDPO1615 days ago

Thanks Carole - I will post when I have seen her/him. All best to you x

KC222219 days ago

My consultant said weight loss due to large amount of energy body needs to keep lungs inhale exhale etc

O2Trees in reply to KC222218 days ago

Yes, that is my understanding too. Can't win!

colourpassion19 days ago

Hi O2, i was dxd with emphysema/bronchitis in 2009, to be honest it didn't impact on me at all, ran business, traveled a lot etc. then 2021 got infection and it's been down hill ever since, i think the lock down and being so isolation left me wide open to one infection after another, i can no longer walk distance/hills etc, get very breathless so easily. During the past few months i have lost so much weight (BMI still good), i understand it is the emphysema though i am aware my diet changed while i was ill, feeling better now and hoping i can push my activity more...but i do understand it is a symptom of emphysema, i've lost weight off my face too and aged 10 years these past few months.

O2Trees in reply to colourpassion18 days ago

Hi colourpassion (great name btw!) I understand about loss of weight on the face - mine is pretty skeletal now. More activity the better but I know it's hard. Good luck with that.

Timberman19 days ago

Hi Jean - I have emphysema, bronchiectasis, asthma, congestive heart failure and a weakened immune system due to leukemia 20 years ago (result!). Anyway, I have the opposite problem due mostly to lack of exercise ( I am gasping at 10 metres now!). Our diet is good but I do tend to snack a bit. I am 6ft 2in and 103 kilos so have a highish BMI. But BP and HR are good.

So I do read that emphysema can cause weight loss but this is a symptom I would welcome frankly!

So I fear my experience is not much help - but my wishes for your good health may have some value! All the best.

O2Trees in reply to Timberman18 days ago

Thank you for responding Timberman. Eventually your wish to lose weight may come true. A bit of exercise could help you use up a few calories but maybe that's hard for you as it is for many. Take care

fancy187219 days ago

Hi there, I too suffer from poor weight loss. I have emphysema stage 4 too. I have always been very skinny since childhood but was in normal BMI range until the last few years. I am a 63 man who stupidly still smokes. My weight is now well below BMI range and has been for at least 3 years now. First thing I was told by my GP and later dietician, is it is incredibly hard to put on weight when underweight because the stomach shrinks. A lot of excellent advice on previous comments. I eat to live, not live to eat as they say. It is a real chore as i am limited in what i can eat due to difficulty swallowing many foods, fattening foods too unfortunately, because of a very dry throat and mouth due to Sjogren's Syndrome which I have always had. Ensure supplements are good, and quite tasty too. But remember for us they should be taken in addition to what we eat and not instead of. One minor consolation is I have been encouraged by GP and dietician to eat cream cakes often and other fatty sweet foods we have been literally brainwashed not to overdo as a nation because of all the obese folk. It really really annoys me that 99% + of all diet plans and info online is to reduce weight. We skinny folk are ignored and contrary to popular belief I have always hated being underweight, more so now it is a real heath issue in itself bringing unexpected health complications too, not to mention clothes falling off me because of the weight loss. Rant over, sorry for long post.

O2Trees in reply to fancy187218 days ago

Omg - my jeans are skinny design from Gap, and my legs are like sticks inside them! My oxygen nurse exclaimed that I was so thin last time I saw her which wasnt encouraging.

So far I dont think my stomach has shrunk as I force myself to eat but I can see that happening. I cant do the sweet foods due to being prediabetic and not wanting that to advance to full-on diabetes. You're right, it is so frustrating that little attention is given to underweight people - all the diabetes sites I go on to concentrate on overweight people losing weight so they can reverse their diabetes. Which is of course a worthy aim but if only we skinnies could get a look in too!

SparkySW12319 days ago

I have emphysema like yourself and have lost a stone in weight over a period of time. At the moment I weigh about 42 kilos and am under a dietician to try to put weight on and taking a specific type of smoothie (milk free) with added minerals and vitamins etc. You use a lot of energy, well, at least I do, when doing everyday things when you have emphysema. It drains you and sometimes I feel absolutely shattered. I've been advised to 'graze' between meals - biscuits, fruit, nuts etc. Maybe that's something you could try if it suits you. x

O2Trees in reply to SparkySW12318 days ago

Im getting so many really nice replies here Sparky, including yours. Unfortunately I dont eat biscuits, cake etc due to prediabetes which I hope will not progress. And I'm not able to eat much dairy as it is currently setting off choking episodes, part of reflux, and very scary. I do eat loads of nuts though. I'll be interested to see what the dietician says. x

Homely219 days ago

I just have asthma and am losing weight, I think it is that everything is twice the effort it should be. It does mean I can drink bitter again.

O2Trees in reply to Homely218 days ago

They say it takes up to ten times the calories for us just to be able to breathe. At least you have the bitter

Normc18 days ago

A few years ago I had a lot of chest infections, l have asthma bronch & copd. I am 6ft 2inches & my weight went down to 10st 7lb from 12 st. A consultant told me I was losing weight because my body was constantly fighting infection. A change of medication solved my problem. Are you having a lot of infections? Normc

O2Trees in reply to Normc18 days ago

No, not really - I havent had an infective exacerbation since 2018, though I have needed short course of oral steroids about once a year for breathing deterioration from asthma. So infection doesnt seem to be a cause of my weight loss.

Maverick215 days ago

As emphysema alone has no apparent symptoms, weight loss is not bad.

I have emphysema and a low BMI 2 years back. After stopping my sports activity, I gained weight. For me, activity controls more than food or appetite.

There are some papers which indicate weight is controlled by gut bacteria. the fattening of animals on a farm by antibiotics too suggests such a possibility.

Try to Increase the weight only if you are already in the Low BMI category

O2Trees in reply to Maverick215 days ago

Everyone's different Maverick. I need to have a bit extra as a guarantee against losing loads if I get a bacterial infection which is what happens - then its really hard to get back to where I was before. Im just hoping to get back to where I was last year. We'll see. Thanks for your reply.

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