Lung Volume Reduction Coils

[helen]

Hi Sue,
We use the global Gold standard and my percentage is about 60.

[susanny]

It is great that you are able to ride your bike and whatnot. I was able to work until I got down to 36, but that's just me. I've read of people with SATS down in the low 20's, high teens and they are in much better shape than I am. I hope you continue to do as well as you are.

[zar]

page 41 section 0010 summary of invention

www.freepatentsonline.com/20090012626.pdf

[John]

Zar I read that ! I would sign up for trial on that one . Thanks for all the info you bring to us .It's is much appreciated

[helen]

I think that's it, Zar! (But again I'm not a medic.)

A little update:

I (4) is back in hospital. There is an infection where the new coils are.
She is always in a good mood and says she still feels better than before the coils.

A (1) is doing very well, went from 35% before the coils to 46% now.

R (6) has had her second treatment (10 more coils) and will come home today.

[susanny]

It is really nice to hear the outcomes of actual patients, not statistics on papers of people nobody knows. Thank you for sharing, Helen. It makes me feel hopeful.

[helen]

On the other forum, we've got a new member who wrote something like I posted as a quote.
She is M and I will refer to her as 7.
The ones on our forum who had this treatment are all women.
I asked did they know if men also were treated and they did, so that's just a coincidence.

everybody,
I'm 49 years old and know since January 2009 that I've got copd (Gold 4).
I was screened for LVR surgery and unfortunately, or looking back fortunately, my condition was too bad.
The next step would be lung transplant which I was not keen on. And then suddenly my lung specialist asked me to sign in for the trail in Groningen.
I got a call on February 9 and was approved, March 10 right lung treated 10 coils. March 12 home.
Felt like an improvement but I thought maybe I imagined it but no I can really do some little things easier than before.
The Monday right after, I went to rehab.
April 21 I'm off back to Groningen for the left lung and hope to get as much as the first and it can only get better.

[helen]

www.pneumrx.com

[zar]

Here is a part of a email I recived

Thank you so much for inquiring about our Lung Volume Reduction Coils. We have just had our website up and running for a short time—so you must have been searching very diligently, and often, to have found it so quickly J. (I am assuming that it is where you saw the LVR Coils.)



Let me give you a little background… I used to do clinical work in a California hospital with Pulmonary patients many years ago. I subsequently obtained degrees in Biological Sciences and Mechanical Engineering, and later a graduate degree in Biomedical Engineering and started working in industry--inventing and designing medical products. My father was diagnosed with emphysema when I was in my teens and when I was in college, he passed away from the disease. As a result, I wanted to eventually work on a product that might help emphysema patients.



In 2004, my husband (who has also worked in the medical device industry for many years) and I started PneumRx and hired a team of very talented people to work on finding solutions to help emphysema patients. Out of this research came the idea for the Lung Volume Reduction Coils. The original clinical work was done in Heidelberg, Germany and then in Groningen in the Netherlands. There have now been over 80 Lung Volume Reduction Coil treatments done in Europe—resulting in over 750 coils being implanted. We are encouraged and excited by the results and continue to expand our knowledge about the treatment with each new procedure. We are also now expanding the number of Clinical Trial sites in Europe. Dr. Dirk-Jan Slebos in Groningen has the most experience


Erin McGurk
pneumrx.com)
Sent: 27 April 2010 03:57:13

[helen]

Thanks Zar!

Dirk Jan Slebos is indeed the lungspecialist who placed the coils in all the Dutch patients.

The link to the website was placed on the Dutch forum by one of the patients.

I have taken the freedom to translate (this part of) your e-mail and placed it on the Dutch forum.
It's so nice for them to know who is behind their Coils.

[zar]

Thank you very much for your interest in PneumRx.

We are currently conducting a clinical trial in London at the Royal Brompton an Chelsea and Westminster Hospitals. If you would like to learn more about volunteering for this study, please contact Dr. Samuel Kemp.

Please feel free to contact me directly if I may be of help.

Best regards,


Jeff Rondinone, PhD

Vice President, Clinical and Regulatory Affairs

PneumRx, Inc.
---------------------------

I had a telephone coversaion with Dr Samuel Kemp.
He said he would be interested in looking at my case records.

If I am not suitable for the coils,they have other procedures that could be considered.

But first I have to get a referal from my Plumo or my GP.

My Pulmo said he would have been quite willing to do so but because he has discharged me from hospital,it is now out of his hands.

Before going to hospital at xmas I had not seen a Pulmo for 4 years,only a Respertory Nurse.

He told me that I must stress to my GP that I want a second opinon,because the tests that Dr Samuel Kemp will be carrying out are very expensive.

I have a appointment with my GP on Monday.
I have not said what it is for.
I will let her read the two emails that I have posted here and then see what she says.

Wish me luck, because it is all in her hands.

[helen]

Well that is very exiting news, Zar!

I hope you GP will be co-operative and why not? She will want what is best for you, won't she?

Of course I do wish you all the luck you need and say a prayer for you.

Go, go, go for it and please keep us informed.

[Blossom/Jackie W.]

Ditto for me as to what Helen said Zar..... My fingers are
and I'll say a prayer as well. And yes; please let us know how you make out!

[susanny]

Good luck, zar. I'll be looking to see how this plays out. How exciting for you the possibility of treatment with the coils. I'm hoping it goes just the way you need it to go.

[zar]

I have a appointment on the 24 th of June at 10 oclock,at the Clinic for Advanced COPD for tests .

[John]

Best of luck Zar I'm very interested in this .Thanks again for all you research

[zar]

My appointment at the hospital.

Went quite well,and for a change when they talk about you going for Xray or blood test.
It not like you have to go down to as far as you can see, turn left,and then,what ever.
Everything is right there.
Entrance to main reception 15m,main reception to xray reception 20m,then 20m to Xray.
Then back pass Xray recption
,turn left 20 min to main waitting room everythig else is in rooms off of there.
I have to go back on 18/08/10 for ECHO,lung function(phone box)and CT SCAN,
Then I have an appointment with the doctors on 28/10/10.
But reading between the lines,I can see that the coils,stents will not be the way for me,because of the scaring in my left lung from TB.
Still hoping(fingers x) that I am wrong,will have to wait see

[Blossom/Jackie W.]

I was just asking about you at the Fence. Good grief... sounds like you needed a scooter or something! Never say never Zar. I've heard of cases (not for the coils) that you'd have never thought a person would qualify for but they did! At the VErY least you're getting some good (and expensive) tests done..... a good work-up!

[zar]

Jackie,
Sorry got you on the wrong track,not 20 mins(minutes)20 meters.
Must be the affects of the tube train
No good drving there (central london)even I could walk quicker ,and parking,like looking for gold.

[susanny]

Even if the left lung scarring rules that one out, perhaps they'd do it to the right. I would wonder, since they know your history, why they would go to the expense and time of all this testing if that weren't a possibility. As Jackie said, at the very least you are getting a thorough going over. You sound very positive, too. I hope things work out for you. Boy, the 18th of August is a long time from now. I'd be all antsy.

[zar]

Even if the left lung scarring rules that one out, perhaps they'd do it to the right. I would wonder, since they know your history, why they would go to the expense and time of all this testing if that weren't a possibility.

Susanny,
Rolling stones gather no moss,so they say,maybe this stone never gathered records too?.
Malaria in MALAWI,thrombosis in ZIMBABWE and tb in SOUTH AFRICA.
She (dr)said I had, had epertitusis (sp) too?, that was news to me.
Thinking about it I dont think someone has done the homework or is it the way they deal with it
The lung specialist that looked after me at xmas,said that he had discharged me from hospital ,but if they needed any information that he had they could contact him.
Where are the Xrays I had done when I first came to England + reports
I know the GP I have now has my TB Xrays because I gave them to her.
Perhaps they wait till they have seen you ,then if they think they need to investigate more THEN they get the wheels moving?.
I know they are interested in my right lung,as the main doctor said he would like to know why it is so dark then he said black
Maybe I should have said that I had spent a lot of time in Africa .
Perhaps they are thinking of doing SOMETHING,as Jackie said.
Maybe whipping out the left one and giving me a part exchanged one, but want to see if the right one will support me while that happening.
We will find out, wont we,maybe at round two?.

[susanny]

You always have me googling something, zar. This time it was for your previously unknown diagnosis of (your spelling!) epertitusis. Turns out it's pertussis, aka whooping cough.

[zar]

Sussanny,I hope you are right, but with my luck I dont get mild dieases
How about Hepatitis,but which one A,B,C.
Use to swim alot in the sea,ski and scuba.
Had injection in stomack,while having TB.
Time for you to google again ;D any way it will keep you out of mischief .

[susanny]

Actually, a little mischief sounds like fun. Reminds me of what my mother once told me. I was a rather 'naughty' child (who me?!). As an adult with a super rambunctious young son, I apologized to my mom for having given her gray hair. She told me that I wasn't a naughty child, but rather a mischievous one. She was such a kind woman....google, mischievous, it means naughty!

My oldest sister got hepatitis from a med. she took. Nasty stuff. They also figure hepatitis is what gave my father cirrosis of the liver in the 90's. They figure he was exposed while serving in Europe during WWII. He live 5 yrs after diagnosis, and they were a miserable 5 yrs.

[zar]

Here is a part of a copy of a letter sent to my GP,from the Avanced COPD Clinic.
...His past medical history includes emphysema,tuberculosis(twenty years ago),neuropathy secondary toTB durgs,hepatitis(possibly secondary to TB drugs,Malaria and DVT.There is no famiily history of note.........

...On examination today,he has a WHO performance of 2 and a MRC dyspnoea score of 3.BMI was 27.There was no evidence of jaundice,anaemia,clubbing,cyanosis,oedema or lymphadenopathy.On cardiovasculer examination,BP 137/85; pulse rate 106 regular;JVP was not raised;heart sounds were normal with no added sounds.On respiratory examination,oxygen saturations were 92% on air;respiratoy rate .There was some bronchial breathing in the left upper zone consistent with Tb scarring on the chest x-ray.Spirometry in clinic showed an FEV1 of 0.88(31% perdicted) and a FVC of 3.15.

He was reviewed by Dr Hopkinson and the plan for Mr----- is as follows:

1. We will obtain further investigations including a CT chest,pulmonary fuction test,blood tests and a echocardiogram.
2. once these investigations are don,he will be disscussed at our MDTmeeting to consider the next option.
3. He will also be contacted by one of our reasercher team to be considered for physical activity monitoring study.

I have given him a back-up appointment in 4 months time, but we will contact you with the outcome of the investigations and MDT in due course.

DVT=Deep vein thrombosis.(susanna no nead to google )

I got this 1 week after having malaria and losing 27 Kgs,when I return home from Malawi to Zimbarbwe(Rhodesia)

[zar]

Sorry,I mean susanny

[susanny]

For a guy who's been through a lot and with COPD, of course, you aren't in bad shape, are you? This is a very promising letter, I think.

By the way, zar, you don't have to be so formal with me. Only my mother called me Susan and that was when I was in trouble. Please, call me Sue

[zar]

Not that bad ,but when you look at it,it is 3 dieases only in 25 years.
Otherwise never went to the doctor that much every 2 or 3 years and when I went I did not know the name of the doctor,who I was under at the time.

As for names
I had a girlfriend after I got devoiced,her name was Susan and in the 3 years living with her I never called her sue.
one of my gransons name is Christopher,people call him Chris.
If I send him a sms I write his full name,the other granson is Gareth they call him Ga(not me).
One son is Kevin,called Kev?other son no problem Lee,and my first born was named Shane.
Dont know why people are not called by their full name?do you Sue.

[sandy07]

You got quite a check up Zar. Hope all turns out the way you'd like.

Were you travelling in Africa for work or pleasure? It's a very interesting and complex country.

I don't like when people shorten their name. That's why I used names for my kids that couldn't be shortened.....Brent....Mandy (shortened from Amanda). Her teachers would send notes about "Amanda" and I would always correct them. Mandy is on her birth certificate. I told her if she didn't like it (too childish) she could use her more dignified middle name...Adele. ( which I have seen shortened to Adie) I think it all depends on what the parents call them.

[susanny]

I can understand a parent wanting their child called by the name that was, very often, thoughtfully sought for while still in the womb. Nicknames are terms of endearment, a personalized "honey, or dear". My aunts and uncles all call me Susie, my dad called me Sue, my mom....Susan. My friend's used to call me Sunshine, . When my oldest sister wants to make a point about something, she will call me Susan. "Now Susan...." My youngest sister, Erin, who was born after my mother thought she was in menopause, called me Gnunnie. Couldn't say her S's I guess. She has shortened it to Gnu now.

I didn't care if my kids names were shortened. My daughter's name is Corinne, and I'd always liked the nickname Cori, so that's what we all called her. Until she hit school and decided she didn't like being called a boy's name (Corry). So she's been Corinne forever now, although her aunts still call her Cori. My son, Benjamin, is Ben. Like I said, for me when I was growing up, the purpose for being called my whole real name is if I was in trouble. Poor Ben heard "Benjamin John!" a lot growing up. The little stinker!

Sorry we've gotten away from the true topic of this thread. Maybe we could say we are debating whether to surgically remove parts of names or not. That'd keep us in the right spirit of "All Things Surgical....."