I was wondering if any one read the article in the daily mail, on the 7th. May 2012.
Me and my operation: The tiny bell that breathes life back into your lungs, has anyone seen anything else about this lady who had the operation, an update on how she is getting on, I am just curious, my husband has c.o.p.d, so I thought perhaps it might be good to invistigate the possibility.
Have a good day.
Dane
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Hi Dane, the article did say and the end....
"The procedure costs £10,000 to £15,000 privately, depending on the number of valves used, with a similar cost to the NHS."
dailymail.co.uk/health/arti...
I guess you could enquire through NHS or through the Royal Brompton, but usually procedures on the NHS are those recommended by the specialising consultants (not all NHS patients will be put forward for this procedure in the same way not all NHS patients will be referred for lung volume reduction surgery,LVRS)
I would be interested to read more about this if you do find out anything more.
Good wishes Zoee
Hi Zoee. Thanks , yes I did read the cost, but I would like to know how this lady is doing, I have been looking to see if there was anything about her progress, but not able to find out anything , but I am still trying, I might drop a mail to the daily mail, to see if they have done a follow up.
But it sounds good, my husband would like to know more about it, so I will keep at it, we live in denmark, and here they dont do anything like that, so they say, I dont think they have got the know how!!
kind regards
dane
Hi Zoee,
I read the article too and showed it to my doctor who more or less pooh-poohed the idea. He did however, make enquiries with the county chest physician from whom I heard nothing. I also emailed Royal Brompton but have not received a reply. This all happened in May just after the article appeared - I have since given up.
Seems to me the doctors and physicians are quite happy to pump us full of steroids and anti-b's forever more.
Regards, Ciss
Hi dane, Zoee and ciss
I had this procedure done, implanting 3 valves in my right lung. Very successful for me. You can read about it at:
bitz-and-bobz.co.uk/copd/20...
If you have any questions, ask them on this blog. I'll be visiting frequently and answert any that I see..
breathe easy
Johnwr
Hi John. Thanks for that info, but it was the article in the daily mail, back in may, lady had a BELL, and you have had the valves, is that the same thing? and how long was the opearation for? Would like all the info you can give me, as my husband has been reading about the lady who had the bells inserted.
Thanks in advance.
Jane
Hello dane,
Yes. This is the same operation that the lady had, and by the same surgeon. When you look at the valves, they look like a cut glass bell, and I can see why a journalist would make that comparison. I have huge amounts of info about this and similar procedures. The operation takes between 30min and 1 hour. It is all done through a broncoscope down the throat. No cutting at all. So no major surgery to heal or recover from. Some people have a sore throat for a day or so afterwards. I didn't. Benefits come very quick. The day before the op, I struggled to walk 10 yards using O2 at 6 l/min.The day after the op I made about 80 yards before needing to sit for a minute because my legs were aching! Actually covered over 300yds on that first trip before getting back into bed. I was using O2 for that walk, but I made the distance.
Keep asking questions. It helps me to know what info people need.
Breathe easy,
regards to both of you
Johnwr
Hi John.
Thanks for your info, so pleased you will share it with us.
When did you have it done? And was it through the NHS, I guess there is a waiting list, and also is there an age limit?
What ever hope your life will be a lot easier, as time goes by.
Thank once again, and wish you all the best.
Regards
dane
Hi dane
The operation was done early in February this year. It was done through NHS though at the time it was not on the NHS general list, so funding had to be approved on an individual basis. Also bear in mind that I am in Wales and the op was done in Cardiff, and NHS funding is different compared to England. There are no age limits, but when choosing patients, the surgeons do look for those who will probably get best improvement.
If you get the chance, I say 'Go for it!'
I just noticed that you live in Denmark. I think maybe you should look there as an option. They are ahead of us there, and this operation is more widespread. Try to contact Dr. Bernd Schmidt at University Hospital, Halle, Germany.
He may be able to put you in touch with a surgeon close to your border. Be aware that there may be funding differences again because of crossing borders.
Also, look at Pulmonx.com website for more info.
Always pleased to answer questions where I can.
You and your husband breathe easy,
Johnwr
Hi John. Once again thank you so much, I have looked at the germany hospital, also looked at the Pulmox.com, all very good information.
I have also found out, they do this op in Copenhagen hospital.
We are going there on Thursday, for something else, my husband have got an abdominal aneurysm,and ofcause they have said they cant do the op, due to his c.o.p.d, so we will be asking if they can do the op with the valves first, and then see about the aneurysm, Oh if its not one thing then its another, so hopefully we will be able to get some anserws soon, but we will keep on, we are due to move back to the UK next spring,so if no luck here, we will see about do some thing once we are back. But he is really strugling, walking etc. everything is an effort.
Sorry I did not mean to go on about his problems, I am so pleased there is someone who has had it done, so we are able to ask ..
All the best
Regards Jane
Hi Johnwr
Many thanks again for this extra information about being the same op as the lady in the Daily Mail. I'm sure this was the same procedure that my Consultant had in mind for me before retiring so I will most defintely bring this up at my appointment in 2 weeks time.
xxx
Hi Johnwr that's great, thanks for sharing. So glad you have benefited from this procedure. Auntymary
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