Hi all. I went to Addenbrookes Hospital in Cambridge today for an appointment with my consultant to find out if they can do anything to improve my COPD. First I had PFT. which showed a Fev 1 of just 15%. That was a shock as last one was 23% 8 months ago. Doc said that I have to build up my weight and strength over the next 6 months then they will do one way valves if pressures are OK. The problem I have is that it is my lower lungs that are affected which normally means Alpha 1 Ant deficiency but I have tested negative for that which he doesn't understand. He said they normally don't do anything if its at the bottom of lungs. He also said he has been speaking to people in Germany and they are now inserting valves into bottom of lungs as well as the top so sounds like It's a new thing. I Have to get my Rehab going again and try to eat more and then wait and see. He said that my lungs are double the size of normal lungs and that they are holding 3 times more old air than normal.
Went to see Consultant to find out if... - Lung Conditions C...
Went to see Consultant to find out if anything could help me.
Do you think he will do the valves if you put on some more weight Lupie. Please let us know how you get on.
Love C xxx
Hi Lupie
Sorry to hear your news but there are many of us in the same boat I'm afraid. My FEV in September 2012 was 25% and at another PFT in December it was down to 17%. Also my lung are at 234%. So I can relate to your problem. Unfortunately I was unsuitable for valves due to what the call collateral ventilation. I am now left with the prospect of endobronchial coils which are being trialled at the Royal Brompton - so all is not lost. There is also the development of what they commonly call "glue" which they inject into the bad parts of your lungs - it solidifies and then eventually collapses that part of your lung so as to reduce the hyperinflation - which is one of the keys to better breathing. To summarise, all is not lost and in addition they are developing new treatments and techniques all the time. Chin up! Martin
Hi Martin, have you been contacted by the Brompton to take part in the trial?
Hi Chinka - No I haven't. I live in Australia and the coils are not available here as yet.
Hello
I struggle to put on weight have all my life, but I did rehab december and January, and my BMI has gone from 15 to 16.1, and I've put on 6 1/ 2lb which is amazing I've never been over 6st 5. But I think the real secret is the dietician told me to put powered milk in everything and it's worked, so it's worth a try to try and build yourself up.
Good luck
Kim
Hi Kimmy59,
I was interested in your advice to Lupie re powdered milk, when I was advised to increase my protein intake by the physio, I investigated and found that one of the foods with highest amount of protein is powdered milk. And of course protein helps build the body and is less energy hungry than carbs. And as a non meat eater is great for me, as are eggs too!
So thanks for the feedback.
hi pollyp.which powdered milk/i mean whats it called /ill try it .thanks take care
Hello Lupie,
Germany is leading the field at the moment with valves, having done about 5,000 operations so far, compared to just under 1,000 in UK. So I think that what they say needs to be treated with respect. Lung disease is one area where advances are happening regularly, and the boundaries of what is considered possible or prudent are being pushed back all the time.
We all want to hear how you get on.
breathe easy
johnwr
Awaiting further news with interest a source for cautious optimism.
You take good care of yourself lupie,enjoy easter,, and keep well... xx
Cofdrop he said if the pressure inside my lung are ok he would do them. Martin from what he said I think they only do one way valves at Addenbrooks which makes me wonder if that's the only option I've got !! (that maybe an unfair comment) He said I couldn't have LVRS because its the bottom of lungs. and Kim yes I've been small all my life and putting on weight has never been easy but I'm trying really hard.
They do the procedure at a number of hospitals in the UK, including Bristol, Cardiff, Oxford, Leeds and Birmingham and a few more I have an appointment on Friday for a Ct scan to start the process to see if I am suitable.
Carole x
Good luck Lupie, and I second Kimmy's advice re powdered milk- a brilliant source of protein and more energy efficient than lots of carbs.
And let us know how you go, and in the meantime, chocooooolaaaate 
I need to put weight on desperately, I don't like the idea of powdered milk but I will try anything, do you just dilute and drink it. I'm not a big milk drinker, do you get it from a Supermarket. Wishing you success Lupie.
Lib x
Hi folks.
I was very interested in the comments about putting on weight with powdered milk.
As in my last blog I've started doing the BLF exercises as my respiratory nurse told me too, but after nearly collapsing yesterday I recall that 1) she said take it easy to start with and 2) at PR they said only to do the exercises about 3 times a week.
I did them full on on both Wednesday & Thursday - mistake! Legs gave out.
To get back to powdered milk, I've found that I don't like a lot of foods I've loved all my life (drives my wife mad poor girl), and a lot of others turn my stomach. I've lost over 3 stone and that seems to have been mainly muscle. So I need to build muscle back up and everyone's comments here seem to make powdered milk sound useful.
Any one got helpful recipes or comments about how they use it? On top of the skimmed milk we usually have or instead? Can it be used on my breakfast cereal (one of the few things I still like?
Thanks
Frank
oh i would like to know how you use powdered milk, as i am so off of food, so some some tips will be really helpful.thanks,
is there an age limit on these treatments? i just reached 74,and this is the first i have heard of them.
hope you are all successfully helped it sounds good .x
Hi Lupie, I don't know much about valves but sounds like with the advancements going on there is great hope. I wish you all the best. This a great site for tips and support,
James
Much as I hate to disagree with consultants, yours is absolutely wrong. When COPD is caused by Alpha 1 Antitrypsin Deficiency, the damage is almost always evenly spread throughout the lung, therefore lungs where most of the damage is at the bottom are usually caused be external influences, for example smoking. When the damage is at the bottom, lung reduction surgery is often possible, but your best bet has surely got to be transplant? Good luck
I was very interested in the comment about powered milk as one who has had difficulty
putting on weight all my life. I have Bronchiectasis and have been advised not to drink
milk as it is mucus forming as is bananas. Has anyone with Bronchiectasis tried the powered milk? And is it mucus forming?
Good luck Lupie with all your endeavours.
Amazing the difference between one consultant and another, i go to addenbrookes and only found out anything about my condition through copies of letters sent to my gp. Last time i went they couldn't find my notes and i was left sitting there an hour after appointment time till they found them. (they'd been left in the scanning dept).
Who would have thought in this post, that apart from various lung surgeries, the topic of powered milk could have caused so much discussion
Yes, it is a high form of protein and yes it can be used in all forms of cooking and in drinks. It is not the only source of protein, but it is a food with a very high amount of protein compared to other protein sources.
Good luck to all of you with your lung surgery options, reductions, valves etc. thinking of you all and wishing you well...
PollyP
I was diagnosed with COPD about 5yrs ago, this last couple of weeks i have felt awful, get really breathless if i do anything and just want to sleep all the time. Don't know if its a bug or something to do with the COPD. Thank you everyone for the tips and good luck with your treatment ........
Polly It is amazing how one thing can lead to another. lol. I have ordered my powdered milk and Raisins & nuts & yoghurts & various other things. Carly I have felt bad this week seem to have a virus back on steroids and Antis.
LVRS
Keep on the tablets or go for being Pacemaker Dependent with dodgy lungs
Been to see my consultant
Further Forward??
