Lung Volume Reduction Coils

[Deleted]

Jun 29, 2013 9:14:03 GMT -5 Blossom/Jackie W. said:

Hi Edward; good question.... why not contact the manufacturer and ask?
www.pneumrx.com/contact-us/

Good luck! And please let us know what transpires.

Hi Blossum, here's the reply I got seems 4 countries are doing them commercially, wrote 1 of them as to cost, waiting on reply, thanks Edward
Dear Mr. Kirkland,



We received your inquiry, below. The RePneu LVRC technology is CE-marked and we have chosen to make it available in a certain number of countries in Europe, through selected partners. You can visit www.pneumrx.com/contact-us/distributor-information/ to see the list of countries, and the partners who represent our products. Cost of the treatments for nationals may vary depending on their country of residence.



Participation in the RENEW Clinical Study is vital to ensuring eventual approval and availability of RePneu LVRC in the U.S.A. We sincerely hope that you will qualify for treatment and be able to enroll in and complete the Study.



Thank you, and good luck

With best regards,

[Blossom/Jackie W.]

Thanks Edward for following up and posting the response you received.

I'm sure there will be a number of people interested in the new/updated info.

It would be interesting to see not only what they charge; but also their success rate.

Continued good luck on your quest AND; getting accepted into the clinical trial!

[crusty]

I just got off the phone with one of the people screening persons for the RENEW or LVR Coil Treatment clinical trials here in northern Calif. Talked for about 45min and she sounded very interested. I'll get all the consent forms in a few days and then hopefully start the study and test process in a week or so.
One requirement for consideration is that you have completed. pul. re-hab with in the last 6 mos. or been performing supervised maintenance re-hab. I just enrolled in a maintenance one today and start tomorrow. I want in to these trials. The first two people accepted are assured of getting the device. The remaining members of the cohort are randomized and not assured of being treated. I can't wait for 5-7 years for these trials to end.
IF I'm accepted I'm willing to roll the dice that this stuff is safe and effective. This is the first glimmer of light at the end of this very dark tunnel we are in and I'm heading for it like a moth. Hope that light isn't a flame. We shall see.............crusty

[sandy07]

Good luck crusty. Let us know what happens and keep us up to date. Sounds like you're going to be going on some kind of wild ride. We'll all be watching.

[Blossom/Jackie W.]

Ohhhhhhh Crusty! Excited? Nervous? Heck; I would be! And from what I gather from your post (and Edward's); this is something you really, really want to do. So.... for that reason by itself, my little fingers are crossed that you get accepted! And like Sandy said.... we'll be watching for posts!

[Deleted]

This article relates to Lung Reduction surgery. However, I would expect the results would be similar with the reduction coils, possibly better as there is no need for recovery from the surgery.

-----------------------------------------------------------

Outcomes after lung reduction surgery

According to US researchers, patients with severe emphysema who undergo lung volume reduction surgery can obtain long-term symptomatic relief.

The authors, from the University of Michigan Medical Center, followed up 89 patients with severe emphysema who had undergone bilateral lung volume reduction surgery to remove parts of their diseased lungs. All patients were given a minimum of six weeks pulmonary rehabilitation prior to surgery. Pulmonary function, distance walked in six minutes, and chest CT were carried out before and after surgery. Main outcome measures, over three years, included forced expiratory volume in one second (FEV1), and improvements in six-minute walking distance.

The study showed:

FEV1 increased significantly over three years of follow-up compared with baseline figures
Six-minute walking distance also improved significantly, from 871 feet at baseline to 1,390 feet three years after surgery
Although FEV1 declined over time, the six-minute walking distance remained the same.

The researchers concluded that lung volume reduction surgery ‘improves pulmonary function, decreases dyspnoea, and enhances exercise capacity in many patients with severe emphysema, although improvement wanes 36 months after surgery.’

www.thealmagest.com/2013/07/outcomes-after-lung-reduction-surgery/

[Deleted]

quote "although improvement wanes 36 months after surgery.’

I wonder where they get these figures. I know of at least four people that have had the surgical procedure for LVRS and no follow up was ever done. Soooo, it would seem to me that they have no way of knowing how long the benefit will last

[Deleted]

I suspect you are correct. They followed a very small number of people, in a small area for 3 years. They have no way of knowing what the longer term will be.

[mel]

Hi All,

I am new to this board but was researching this topic & came across your site. I was recently referred to a clinical trial of the RePneu coil by my transplant Dr. in San Antonio, TX. I just spoke to a coordinator and the information she gave me is that the trial/study will last 5 years. If approved, 50% of the patients will receive the coil, the other 50% will not, but will be able to get them 1 year into the study. As she explained it, they will place coils in one lung and then wait 4 months & do the other lung.

I plan on at least being evaluated for the study. I will try to give information here as I find it out.

[Deleted]

Mel, that would be great to hear about your experiences with the processes etc.

[sandy07]

Thanks mel. Let us know how things are going and don't forget to keep a journal for yourself as well.

[Blossom/Jackie W.]

That would be wonderful Mel and so very appreciated by many people. Thank You!

[crusty]

Up date on my application to the ReNew coil implant trials. (LVRC for lung volume reduction coils as opposed to LVRS for lung volume reduction surgery. Its been sooo slow but I now have an appointment at UC Davis for the second round of screening. In the first round they just poked around all your recent med. files for something to disqualify you. I squeaked by with the caveat of having "border line Heterogeneous emphysema" instead of homogenous emphysema. Apparently being homo emphysemic can't be treated with current interventions except a transplant. The whole lung is damaged where as in hetero emph. there are targets of damaged tissue which can be excised, ablated or some how shrunk in size using broncoscopic techniques instead of the "whack and crack" methods of LVRS (surgical excision). So on this coming Wed. I will meet with the team and get interviewed, ECG, EKG, chest Xray, spirometry, lung function, ABG ,blood draw and a physical exam. No CT exam unless I pass all the previous road blocks. I'm still in the hunt. May know more in a week or two or three.........I'll let you know....................crusty

[sandy07]

Thanks crusty...we'll be waiting. Good luck with all that.

[Blossom/Jackie W.]

Wow Crusty!
thumbsupde1
So far so good!

My little fingers are soooooo crossed for you!
angel


We're rooting for you!
cheerleader0-vi

[areo]

If you have LVRS or LVRC both procedures are to try to reach the same goal,which is to remove or crunch up areas of diseased lung to allow good areas of lung to function better.

The CT SCAN is most important as this will determine where and how many areas can be cut out, or how many coils can be used.If you have areas (patches)of diseased lung these can be remove to help the good areas function better,but if the areas are like a sieve with holes (that emphysema causes).

By removing these area could mean removing say 50% of good lung to remove 50% of diseased lung,this will not be done as that would be defeating the object of the procedures,and also if what areas they could remove would not improve your quality of life to a certain standard, they also may not do it

Been there,my lungs are like a sieve.

[sandy07]

Sorry it didn't turn out for you areo. Did anyone suggest a transplant?

[skate4life]

I just got home Saturday from 7 days in the hospital (4 in ICU) for exacerbation - first hospital admission since dx with emphysema. Pulmy told me Yale University (New Haven, Connecticut) is enrolling patients for the RENEW study (1 of 30 centers in the USA.) Printed all the info and today emailed back and forth with Study person. She answered all my questions re schedule of all the testing, bronchoscopy for coil placement is done 4 months apart. My biggest concern was my lack of other people to drive me back & forth (it is a solid 45" to get there, then add time for parking etc.) She said I could drive myself. Still have some other questions and I will talk with my pulmy about it. I'm not sure how I feel about this. I thought I would post this for any USA people on this board.

[sandy07]

skate....how many times a week would you need to drive there? For 4 mos.? I don't know how bad you are but I thought they did these things when people were quite bad. I suppose they have their criteria. It might be interesting to do. All the tests would be free, right? Even if you didn't end up getting the coils it would be an experience. Do they pay for lunch or parking? Maybe a daily fee? Some do.

Let us know what you decide. Then let us know how things are progressing. We can all learn from your journey.

Hope you're feeling better now and stay that way.

[crusty]

Well Folks, I'm out of the PneuRx LVRC trials. I couldn't get past the lung function test, that is my RV
(residual volume or trapped air was not high enough. 165% predicted instead of 225% predicted to qualify. The
RT's comment was that I'm too healthy and that I definitely don't want a RV of 225% or greater consider your self fortunate. Well, that glimmer of hope at the end of the tunnel is out for now but perhaps the tunnel is a lot longer than I had feared..................crusty

[susanny]

Take heart, Crusty. I can hear the disappointment in your post. I am sorry that things didn't work out FOR NOW, but like you said, perhaps the tunnel is a lot longer than you'd feared.

Did you notice an improvement after you went through the rehab? I would think that you had and perhaps you are able to do more than you could when you first started out on this quest. Don't give up; keep on the rehab pace and hopefully it will be a long long time before you actually do need the surgery. Also keep on top of those dr appts and keep track of your numbers. You don't want to fall behind and find out you missed the boat. Knowing you and how tenacious you are, that won't happen.

Prayers and energy for you, Sue

[Blossom/Jackie W.]

Well Crusty..... guess that's kind of a double edged sword isn't it but like you said...... the tunnel is longer! And, maybe by the time you would qualify it might be standard proceedure! I think it's great that you were even willing to give it a go so to speak! Just out of curiosity, how many litres would it equate to for qualifying?

[sandy07]

Interesting. I just looked at mine. I was at 185% 2 yrs. ago. I haven't had a PFT since. Was just getting better from an exacerbation and had to cancel my last appointment. Didn't make another. Guess I should. Thanks for letting us know crusty.

[crusty]

Blossom: Lung function tests are specific for age+weight+gender+race so for some average skinny white male geezer (SWMG) the predicted RV is 2.80 liters How ever, when this same SWMG has emphysema thrown in the mix my RV is 4.61 liters or 165% greater than the average SWMG. I have an extra 1.81 L of trapped air most of which is co2 in my lungs. Just the nature of the beast..................

[crusty]

Blossom: Forgot to answer your question. It would take 2.80 x 225% = 6.3L RV to qualify. Thats a lot of dead air left after fully exhaling.

Sandy: Maybe you don't want to know how much worse you may be.

Sussany: I took rehab two years ago which motivated me to get a TM. Had to enroll in a supervised maintenance rehab as a condition to qualify for the trials but had to drive 40 mi. EW. Since I'm out of the trials I stopped the rehab. I've lost the motivation to get on the the TM. Am struggling with my weight loss. BMI=15.9

Skate4life: Hope you can qualify for the trials. If you haven't seen the video by Dr. Slebos of the Med Center in Groningen,Netherlands. Here is the link. This is a fantastic vid of the broncoscopic insertion of the coils.
...........crusty

[Blossom/Jackie W.]

Thanks Crusty. I'm aware of how it works etc (%'s and what it's based on), I was just wondering what it was in ltres for this. You're right it IS a very interesting video!

[mel]

Crusty: sorry you weren't able to get into the trial. Thank you for posting the video, very interesting.

I spoke to my Clinical Trial Coordinator yesterday and they are still on hold. Some problem with changing wording on release forms and/or a protocol change. Anyway she says they should be getting to me soon. I am keeping my fingers crossed and will post again when I know more.

[Blossom/Jackie W.]

It would be fantastic to follow someone's jpuney from start to finish with the coils. So Mel; maybe that person might be you!

[mel]

I got a call from the Study Coordinator. They are back up & running and I am hoping to get an appointment for the 1st part of the evaluation process the 1st week of November. My transplant Dr. is the one running the clinical trail so I can't imagine that He would have me come in if I didn't meet the necessary criteria. I just don't want to be disappointed like Crusty was.

I am very excited and any positive energy sent my way is appreciated.

I will try to keep you all up to date.

[Blossom/Jackie W.]

Mel; I think your news is bloody fantastic!
thumbsupde1

And you're right.... your Dr would surely know by now.
Bet you're a tad bit nervous!

Yes... please....
keep us updated AND Good Luck!