I have Bronscheitiasis, Emphysema and Asthma. Diagnosed 2007. On various meds and inhalers.
Now and then my weight would drop when I got worse. I looked up what I should be eating etc and have taken all that on board throughout the years.
Over the last year I have gotten so skinny my bones are showing everywhere. I’m eating right and although it’s very hard I still walk as much as I can. My osteoarthritis has flared up this year and is not giving me a break at all, but I still try to be active.
I’ve asked for supplements, just in case I’m missing something in my food intake, but the doctor won’t do that. I’ve gone from being a size 10 to to between a four and six.
I’ve mentioned this several times to gps and respiratory nurse, no reaction! It’s causing me a great deal of stress now, as my family are constantly remarking on my weight and don’t know what to do about it anymore, it seems to fall on deaf ears!
My food intake is well above average and often!
Recent blood test showed nothing to be concerned about.
Blood pressure is continuously high and awaiting for a call from doctor regarding this.
How do you out on weight, any tips are welcome.
Thanks for reading this👍
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Shalz
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Thanks for your response! Yes I already do all those things plus protein powder in porridge oats etc! Just seem to be loosing the battle! I think the worst thing is being ignored, I feel as if I’m really shouting( not literally) at a wall. It’s feels like oh well she has these lung conditions and it’s just part of the course! No one is listening or even remarking on my requests about this at my surgery! My COPD nurse just does calls over the phone now and I get frustrated at that! How can she know for sure what my lungs are doing, you can’t measure it down the phone! I keep saying these last couple of years, when can I actually, physically be seen, so I can do the blow tests etc and see how I’m doing and any changes. Even have another discussion about the weight loss!
My surgery has actually invited me for a face to face asthma check up for the first time in two years. I hope yours will soon start to as well. They do seem to be lightening up a bit. Your situation sounds really frustrating- quite unacceptable. I think you will have to do what Littlepom would do and keep on at your surgery until you get what you need. Good luck. xxx
Write to your GP. A hand written letter requesting that you want a F2F appointment. Accept no less! Written letters usually get a response. Good luck and wishing you all the best. T57
Thanks for your reply👍 Yes, I did and the doctor said no, just go to get an X-ray. I did have a consultant, but then moved home. So I’m going to push really hard to see one! Everyone keeps saying go to A&E, especially with the high blood pressure, not just my chest. I really don’t think that’s a good place for me to go at the moment as it is absolutely busy. Of course if I really couldn’t cope, then I would have to. I would rather see a consultant like I used to, as they are good at their work and help to get things sorted out. My doctors just seem to fob me off and I can’t even get a face to face! Just a telephone call. Think I need to change doctors too.Have a good weekend and thank you 😊
This is a long shot Shalz, but have you thought of ringing your old consultant and asking him to transfer you/ your case to a consultant at your local hospital? I know others have had different experiences, but in my experience hospital consultant’s secretaries have always been very helpful and sympathetic when you explain the situation before you put in your request.
Hi Shalz, sorry to hear you are battling with your weight.
A few years ago, I developed a nasty infection after an op, and ended up losing weight. I'm ordinarily a slight build (size 6 trousers, and 8 on top) and don't have issues staying that way.
When I commented to the ANP who was caring for my wound that I had lost a couple of kilos and wasn't having uch luck getting it back, she warned me it would take a while when my body was fighting the nasty infection and healing from the op.
She didn't offer me any dietary advice, which I was quite happy about as there are some things I can't eat anyway, but in the end I just made a definite effort to up my portions, and ensure I had plenty of protein and fats. Absolutely nothing low fat.
I added butter to veg, cream to my yoghurts and just stuck with it. It took a couple of months to get the 2kg back.
I don't post this for sympathy, but really to emphasise if you are trying to gain weight it can take a while and needs persistent effort.
A while ago when the dietician wanted me to put on weight , recommended sticky puddings with lashings of custard.Jam rolly polly etc , anything to get those calories down.
Complan does a range of nutritional supplement drinks that you can get without prescription which you can take in the meantime. Try to avoid foods that are filling without providing a lot of nutrition, like some packet soups.
If drinking alcohol is not a problem, try a daily bottle of stout, sweet stout or Guinness. If you have a sweet tooth, try hot chocolate made with milk and laced with whipped cream or ice cream, as a snack between meals.
All the best as you try to contact your former consultant.
Have you contacted your local PALS? In not, could you explain the situation to them and see if the can advise you? You certainly seem to have enough to contend with without the added worry of your weight loss. Hope you get the help you need and deserve soon. Good luck
Over active thyroid by the sound of it I only say this because my cat was eating and losing weight and diagnosed with hyperthyroidism. Although I’m no expert of course - however when I went to gp two years ago before covid the nurse was concerned I’d lost 1/2 stone and said if I lose any more I need to go back!! I didn’t lose more so didn’t go back but with COPD being full doesn’t help my breathing so I eat little and often. Go back to the GP good luck
Hector was hospitalised I was so anxious and cried - he was severely dehydrated however he is a bit better and home - he’s on this medication that’s like chemo but for his thyroid - I want to stabile him to get him an operation of removal. Mollie is much better now - it’s worrisome because they’re 15 this year and according to vets (old) cats x
If you do make a milk shake of full fat milk, Hagen daaz vanilla ice cream, table spoon of sugar or honey, some sweet fruit that you love, a spoon of collagen. It needs to taste delicious. At least once a day and up to three times.
Hi Shalz, I have bronchiectasis, recurring Aspergillosis and Asthma and I am very underweight. My lung consultant was concerned about my weight and referred me to a dietitian. Like you I have a big appetite so it isn't through not eating enough. Basically the dietitian told me to up the calorie rich foods (cake, cream, puddings etc) and to think of your dinner plate as a capital Y with the veg in the small bit at top of the Y and carbs and protein in the larger sections. So far I've only put on a few pounds but every little helps. I hope you soon find a consultant who will refer you. Take care xxx
I am sorry to hear nobody is taking you seriously Shalz. Please speak with your gp again and explain that you need to see a dietician and if he refuses speak with your practice manager and insist. You know your body better than anybody and know if something isnt right x
Hi Shalz. I have similar breathing problems & lost weight over 20 lbs in a year. I ride a recumbent as my “arthritic joints prevent walking or riding a bike. About 10 weeks ago started getting chest pains during the night, on one of my rides mBP was very high & stayed there, I also felt awful & dizzy. Later that day I called 111. An ambulance took me to hospital where I had an angioplasty. Recovering & feeling much better today all round early signs. All I’m saying to you is that it does not necessarily have to be what your already being treated for!!!!! I sometimes say how could I be that unlucky to have all this wrong with me.
I now weigh 5 st 1 lb. I really need to put on weight but nothing helps. All I have got from doctor is ensure drink once a day. I don't feel hungry but force myself to eat little and often but find I am sick because my body doesn't doesn't want it. My respiratory nurse said because I have COPD/Emphysema MY body is using a lot of energy trying to breath. I was seen by dietician but as soon as she said to put dried milk on potatoes I have up in her. I've stopped asking my doctor about it as I am not getting anywhere with them. I don't know what to do next.
Hi Shalz, sorry to hear you’re going through this stress . A pulmonary physiotherapist who treated my husband a couple of years ago told us that in his many years of dealing with lung disease he sees that his patients fall into two categories, those who lose a lot of weight and those who don’t and there doesn’t seem to be any known reason 🤷🏻♀️ You seem to be doing everything right diet wise and as the powers that be don’t feel supplements will help I think your priority right now is to get the tests you’ve missed and put your mind at rest re your condition. All Gp’s now have to give face to face appointments so maybe start there and get the referrals you need . If it’s any consolation my husband has battled with emphysema for 17 years , has been on oxygen for the past 5 , been hospitalised twice in the past couple and is generally very poorly most of the time and he is still 11 stone ! I’m no expert but possibly the weight loss isn’t necessarily an indication of a big deterioration in your condition, I hope that’s the case Good luck x
Hi Shalz. I also have bronchiectasis, asthma, etc. and I'm sorry you are not being heard by your medical people. It can be so maddening. Just wondering, have you had a recent sputum test to check for a new infection? I had all the symptoms you describe, and walking was really hard, had weight loss, etc. It was discovered I had a rare lung infection called stenotrophomonia which is found in soil and water. This type of infection is on the rise. While in hospital being treated for pneumonia, I was given vancomycin and doxycycline which cured my pneumonia but seems to have cured this infection as well. The weight loss began a year ago, and my breathing has been really bad for a year. But now my breathing has improved immensely, and walking is so much easier. It's too soon to know if I will gain back some weight as my hospitalization was in April. I also agree with Lizzab to check your thyroid. You never know, it could be adding to your weight loss. (I acquired a thyroid problem in my forties.) Good luck!
Hi Shalz, I agree that you really need a referral to a dietitian, they can go through with you in detail what you are eating and (a good dietitian) will be able to work with you to make appropriate suggestions and a personal plan for you to increase your energy intake using foods you like - often even small changes can make a difference. They can also prescribe food supplements, there are many different ones to try to see which ones you prefer. They are the specialists, they have the time and focus, it's their job! - often GPs are just not much help.
If you can't get a face to face appointment with your GP, maybe ask (insist) on seeing a practice nurse. They should calculate your BMI (Body Mass Index) - your height for your weight, and if it's low (which I'm sure it would be) they should refer you to a dietitian. They should also look at your weight history (which should be in you record from the asthma nurse etc) and will show how much weight you have lost over time. And maybe any blood test results.
It would also be a good idea to keep a food diary - note down everything you eat and drink, at what times and roughly the portion size. if you can, do it for at least 3 days, a whole week would be best....take this with you to any appointment.
You're welcome to direct message me if you'd like some more detailed info. Good luck getting some proper help and advice with this x
I have great empathy with what you say and it must be very frustrating, although you do take a very positive approach to overcoming the problem. Do you have a smart watch or Fitbit?
If you are ingesting more calories than you expend logically you put on weight. If this is not happening it would be logical to look for a reason other than diet.
Can you measure this? And check it out?
I count calories this way and although it still is difficult to keep weight on it has helped , together with attempting to slow down my body just running at such a fast rate that weight will not go on
Can you or do you already use breathing and mindful techniques to slow down your energy expenditure?
My very best wishes in your exploration and here’s to happy weight gain.
I am the same. My weight has gone down to 5stone 3lbs. Every bone in my body sticks out. I try to cover up as best I can because I look anorexic. My clothes don't fit me. All I get from the doctors is eat more. They have prescribed ensure drink and that's it. Last July I had a TIA and at that I only weighed 5 stone. I eat as much as I can, little and often but doesn't work. I have severe emphysema and doctor says I'm using a lot more energy just trying to breathe. I was referred to dietician but as soon as she said.sprinkle dried milk on top of mashed potatoes I had up. Sorry for rambling. I hope you get help as that should help as well. Good luck
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