Mel's Lung Volume Reduction Coil journey

[sandy07]

thumbsupde1Sounds great fred. Hope everything continues to improve and that you'll get the right lung done too. I'm happy for you.

[idleguy]

Fred, I just found this site and this thread and wanted to wish you the best from your procedure. There doesn't seem to be many people in this trial that have posted on a forum (that I can find) so your experience is heartening. I was 'randomized' into the control group also like Mel. I was accepted about a month ago and HOPE that I can re-qualify next year for the 'follow-on study group'. Looking forward to more posts from you. Unfortunately us in the control group won't have a lot of news to report...yet.

[mel]

Fred, that is great news. I hope you continue to keep us updated on your progress. I am still hopefull that I will be able to get the coils in the "follow on group". Idleguy, good luck to you as well.

I have another appointment this Thurs. in San Antonio. It will consist of Lab work, PFT, 6 min. walk & visit with Dr.

Good luck to everyone.

[p.sunde]

was picked for control group in mayo clinic in min. june 9 was my first of many returns hopefully I will receive coils at end of trail

[mel]

p.sunde, I am wishing you good luck and hope you can get the coils in the follow on group.

[p.sunde]

thanks mel looking forward to them coils. thumbsupde1 sound like they work well

[p.sunde]

I believe the follow on group is proceeding, has anyone heard

[idleguy]

p. sunde;

Do you mean that the control group will receive the coils as originally scheduled at 10 1/2 mos, or sooner?

[p.sunde]

that is what it sounded like to me . I just typed in { ide crossover trail for lvrc for emphysema} and found the news dated sept. 18 2014

[fredtx]

I am happy to report that I will be having coils implanted in my right lung on October 13. I have been patiently waiting for this news since it has been four months since having my left lung treated. I am hoping that this will improve my QOL even more than just having one lung done. I will update when it is appropriate.

[p.sunde]

good luck fred, hope things go well. (for all of us waiting)

[fredtx]

Thanks p.sunde. I am pulling for all that are in the control group.

[p.sunde]

fredtx can you feel the differents with the coils

[John]

Please let us know how you make out . thumbsupde1

[fredtx]

I had my second LVRC procedure on October 13, in San Antonio where 10 coils were implanted in the upper lobe of my right lung. After seven days my results are that I still get short of breath but less often, my rebounding has definitely improved even though I still have some blood in my sputum. In addition I find that I can use pulse on my portable O2 instead of constant flow in certain situations. While I am satisfied with the improvement in my QOL I fully understand that I still have emphysema/chronic bronchitis and that is not going to change until there is a cure for these conditions.

I think it is important to remember that this is a trial and other patients may or may not see any of the improvements I'm experiencing. We are all different and our PFT test results are only applicable to us. I remember years ago a pulmo of mine said that the results of PFT tests are numbers, but it is far more important to rely on how we actually feel. That does not mean that I am not curious to compare my PFT results pre-LVRC and post LVRC. Once I get that information I will post them.

I do want to thank each of you that have been supportive to me during this whole process.

[P.sunde]

It sounds like it at lease help sum ,witch is much better then none. Hopefully it will only get better for you. I am in min. Mayo clinic for my 5th visit on October. 21 hopefully I wi get good news soon

[fredtx]

P.sunde, when your FEV1 is 20 % any little help is very welcome. I hope that you get the same opportunity that I and others have had to participate in the LVRC clinical Trial. Good luck and hang in there

[P sunde]

Fred do you do a normal workout routine

[fredtx]

I follow the protocol of exercises of the rehab program where I live. Includes treadmill, easy step, light weights and stretching. Usually 1-1 1/2 hours daily.

[p.sunde]

yes this is good to continuing to move, I believe that it will help the coils do what they are intended to do, I hope I will be able to receive the coils in the crossover trial I keep a very intense workout 6 days a week, I need that boost from the coils                    [ I hope]

[aero63]

I am glad that at least there is some improvement with O2 flow being reduced to pulse. I agree that any improvement is greatly noticed when down to certain levels.

You are a brave one doing this trial and should be praised by all to go through with it.

Keep on keeping on. Thanks for sharing.

[P sunde]

So Fred is your breathing getting any better

[mel]

Just wanted to update you all on my journey. I had my last visit, as part of the control group, last week. I have been told that I am approved for the follow on group & should be getting the coils sometime in February. I am not very patient and very excited to have the procedure done. I was told by my Dr. that the company sponsoring the study recently sold for a boat load of money, so I think they must be getting good feedback from the clinical trial.

On a sad note, I found out that another member on this site, FredTx, passed away on 11-24-14. I was told it was due to complications of an unrelated surgery. Very sad.

[mary57]

Mel, I'm glad to hear you will be getting the coils, but saddened to hear of Fred's passing. Thank you for letting us know.

[Margz]

to all, I am from South Africa and the first of two people to be part of the LVRC trials. I had my first 10 coils place in September and the second 10 in October. Both procedures went well. I did feel a slight discomfort after the second procedure and my actual readings did drop after a week but have increased since then. I can't say I feel a massive improvement but a definite gradual increase of lung capacity. Still have days where I can not do much then other days I have energy and air. I am due to see Mr Dr at the end on January to have test done to see if there is an overall improvement. Can anybody say as to how long will be take to feel a marked improvement. Also is it normal to cough up a little blood from time to time.

[mel]

Margz, I am glad you are having some improvement with the coils. Please keep us informed about your progress and visit with Dr at the end of the month. I have been told that coughing up a little blood is common with a bronchoscopy/coil procedure. Good luck.

[p.sunde]

good to hear mel you are getting the coils in feb. and very sorry to hear of freds passing I will return to mayo clinic in min. on Mar 4 for my 8th visit. just hoping to be able to receive coils after my 1 yr. June is my 1 yr.

[p.sunde]

Jan 3, 2015 16:21:50 GMT -5 p.sunde said:

good to hear mel you are getting the coils in feb. and very sorry to hear of freds passing I will return to mayo clinic in min. on Mar 4 for my 8th visit. just hoping to be able to receive coils after my 1 yr. June is my 1 yr.

[mel]

I just finished my initial testing for the follow-on portion of the LVRC study and if all is approved will be getting coils soon. I wanted to let everyone know that they are going to be extending the study with new patients. My coordinator thinks it is called the 'Recap' LVRC study, but it isn't on the government website yet. If you didn't get in in time for the last one, here is another change.

[skate4life]

Great news Mel! You mentioned in your Dec 22 post that the company that originally sponsored the insertion sold to another company for a 'boatload of money.' Do you have the name of the new company? Is this the maker of the coil??