cf treatment

[lesley]

I'm from England and have a son with CF who's 18 and only diagnosed at 16. In some ways this is good, because he is pancreatic sufficient and so a big strapping lad who doesn't look ill and probably better able to stave off infections. The down side is that he spent 16 years being treated (insufficiently) for asthma and so has quite bad lung damage which could have been saved if he'd been treated properly.

What I want to know is whether CF patients in the US get any different treatment from in the UK. I read something in a magazine about a US patient having some kind of vest to loosen the mucous in the chest, which doesn't seem to be available here. All we have been told is that he must use antibiotics for specific infections and do physiotherapy. I suspect there are treatments used in the States which are more advanced than here in the UK because we are at the mercy of an underfunded health service. Any advice would be most appreciated.

 

[JazzysMom]

Overall your care is about the same I believe. The vest is still a form of physio. It just does all the sections at one time & is done by a machine instead of a person which saves time & is convenient. There are other countries that are ooking into things before we are so I dont know how advanced we are compared to others. If something is addressed by us here in the US & U want more info on it then ask because if its not available thru your healthcare or the doctors it might be the only way U found out!

 

[anonymous]

Lesley, if you go to www.cftrust.org.uk and click on meeting there is a forum for all of us in the UK. I am preciousjewel and have a daughter who is 9mths old. We are a friendly lot so just introduce yourself..if you havent already.

 

[anonymous]

Leslye, you can view the vest at <a target=new class=ftalternatingbarlinklarge href="http://www.thevest.com">www.thevest.com</a>, I believe they even have a video of someone using it. One of the moms on this site, Kelli who has a daughter named sydney has a video on their website of her toddler daughter doing it. I'll see if I can find it so I can post it on here for you.

It is my understanding, from others in the UK who visit this site sometimes that the UK does not have this vest available yet. I am not sure if this company would ship it to the UK (not sure what the international laws are on this sort of stuff, plus not sure how the healthcare system works either) but I would say that it isi definatly worth the inqury.

My husband has the vest-LOVES IT. It also frees me up to do other things (work, housework, cook a decent dinner, relax...) than spend 1 hour of chest PT on him every morning and night. He does about 20 minutes in the AM and 10-20 minutes in the PM. The only side effect he dislikes, but is tolerable is that all the shaking/vibrating leaves him a little itchy. I couldn't understand what he was talking about so I gave the vest a try for 10 minutes. It sort of reddens the skin (and he's a big guy, so he has it on one of the highest intensities) and leaves you feeling like you itch all over your chest and back. He said after about a month he got use to it though. .

Hope this helps a bit, let us know if you have any more questions.

As far as treatments here it the US, we have Tobi (nebulized tobramyacin-antibiotic), Pulmozyme (DNase) to thin the mucus (NOT an antibiotic), Colistin (newer) in nebulized form (traditionally use as an IV antibiotic) and then the traditional Cipro and other pill forms of antibiotics and IV forms.

 

[anonymous]

Lesley, that was me (julie, Wife to Mark 25 w/CF) and sorry for spelling your name wrong, I can't edit it as anonymous.


Julie, wife to Mark 25 w/CF..... who will graduate from Washington State University in May 2006!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
<a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</a>

 

[anonymous]

Lesley, You can now get the Vest in the UK but costs about 10 grand....

Heres a recent post from the uk site
Thought I'd let you all know I had an email today from Hill-Rom the american company I contacted a while back about these vests. I got another reply from them today. Have not called them as only just checked my email. Will call them tomorrow, and will then ask the CF team what they think. Will post back after I contact them for a price and let you all know but incase anyone wants to contact them themselves here is the email:

Hi
Thank you for your email regarding the Vest, I am delighted to announce
that the Vest is now on sale in the UK for further information please
contact Debby at Hill-Rom on 01530 562018 or email
debby.martison@hill-rom.com

Look forward to discussing the Vest with you
Regards
Debby

 

[Diana]

Hi Leslie,

It is great to know that has a true diagnosis of your sons health and can now give him the best preventative treatment he needs. I am from Australia and like the UK, we do not promote the Vest over here. It seems the cost is the largest factor and as far as I can tell the insurance companies here don't pick up the bill on it. I did ask my daughters CF doctor why it was not a 'promoted' option in AUS and he said the cost is very high and there are no studies to show that it is better than manual physio.

I don't suppose anyone here knows of any studies that were done to compare the two methods??? I would love to learn more on this one. It would of course be nice to free up some more time (to be used to do housework n o doubt!!).

 

[lesley]

Thanks everyone for all the great replies. 10 grand is a lot of money for a vest and I can't see the national health service stumping up that kind of cash! I only thought it might be useful as my son doesn't do any physio at all, but then again if it itches he will use that as an excuse not to use it anyway. Teenagers are so difficult!

It was also useful to know about DNase. We haven't been offered this yet, so I will ask the CF nurse when we visit the clinic this week.

Thanks also for the tip about the UK site, preciousjewel. I'll see you there