It has been 6 six weeks since I had 10 coils placed in my right upper lobe. The surgery was without any problems and I was eating a sandwich and drinking a cup of coffee a few hours later and spent two nights in the hospital. I felt so good on my way home that we stopped for a bite to eat and I noticed I wasn't short of breath at all; well, that was because I was still on a high dose of prednisone (40mg) and as I did the drawdown on the prednisone I noticed more and more shortness of breath. I kept hoping it was only a matter of time before I would improve but so far I have not had a single improvement. Last week, I went for my first post treatment checkup. The Pulmonary tests showed zero improvements and I did even worse in the six minute walk by 100 feet than I did before the coils were inserted. The xray taken that day showed no changes. The coils were still in place but no shrinking of my lung has occurred yet. I am hoping it will just take time to see improvements but I am not sure where it stands because no one has contacted me about how to proceed at this point. I am hoping I am an exception and other patients in the trial see better results. As part of the trial I am supposed to have the coils placed in my left lung in January but I am not sure if I will proceed at this time.
Update on my results from the RENEW Study for Coils at Beth Israel, Boston
- Thread starter Jeannine
- Start date
Jeannine - You were put through the wringer to even get into this trial. I know you could write a book about it. I am hoping too that it just is taking you more time to see results than anticipated. It certainly would be helpful if there was better communication.
JC the Fox
New member
Well, nuts. Good things are supposed to happen to good people. Your going through this procedure inspired me to try to get into the lung valve trial here in Cincinnati. I received all the consent forms last week; and I go for my second interview next week.
I am in the hospital because all antibiotics to cure my pneumonia are failing. If you should decide to take part in the coil program have yourself tested for a nickel allergy first. I am positive that is my problem yet no one believes me. I feel better for a few hours and Tylenol is the only thing that helps with the chills, low grade fever, wrist and ankle pain, rapid heart rate and low oxygen levels. Proceed with caution.
But thanks to our wonderful healthcare the hospital doctor can't have me tested for allergies. He can ONLY treat the pneumonia. So I have to wait until Tuesday just to see my PCP to get an appointment with an allergist? Insane.
But thanks to our wonderful healthcare the hospital doctor can't have me tested for allergies. He can ONLY treat the pneumonia. So I have to wait until Tuesday just to see my PCP to get an appointment with an allergist? Insane.
Vancouverman
New member
Hello dear jeannine,
At first I was so excited and so happy to hear that you received your coils. But now I looked up on the internet what material this Nitinol is (the coils metal), well its an alloy, and there really seems to be nickel inside and some atoms are going into the body. I even found some scientific papers where they say you can get nickel allergy because of that alloy.
I would do some skin patch tests for nickel allergy. Probably you are not really allergic. Otherwise I would remove it too..
I am a little bit sensitive when it comes to these things too. So if I were you I would probably let them remove.
There are also still these valves. They also shrink the lung a little. Perhaps these are not made of nickel, but only out of titanium. I have not fond out yet. If its only titanium then I would not be concerned about.
At first I was so excited and so happy to hear that you received your coils. But now I looked up on the internet what material this Nitinol is (the coils metal), well its an alloy, and there really seems to be nickel inside and some atoms are going into the body. I even found some scientific papers where they say you can get nickel allergy because of that alloy.
I would do some skin patch tests for nickel allergy. Probably you are not really allergic. Otherwise I would remove it too..
I am a little bit sensitive when it comes to these things too. So if I were you I would probably let them remove.
There are also still these valves. They also shrink the lung a little. Perhaps these are not made of nickel, but only out of titanium. I have not fond out yet. If its only titanium then I would not be concerned about.
JC the Fox
New member
Valves
The valves used in the Spiration trial are, in fact, Nitinol - which is a Nickel/Titanium alloy. It appears to be the safest alloy used for a variety of devices placed within the body. If I get to have them placed in me, I shall keep posting as to my progress, or lack thereof.
The valves used in the Spiration trial are, in fact, Nitinol - which is a Nickel/Titanium alloy. It appears to be the safest alloy used for a variety of devices placed within the body. If I get to have them placed in me, I shall keep posting as to my progress, or lack thereof.
I should have updated my status with the coils. It has been 3 months now since the coils were placed in my right lung. I had some major bumps (pneumonia and a blood clot in my lung) but I am finally feeling much better. In fact, I am breathing better than I have in years. There is no sign of an allergic reaction. The blood clot was causing the problem. I am still going ahead with having the coils placed in my left lung some time in March. My lung function has improved if my peak flow and ability to do much more are any indication. I do apologize for not updating sooner.
Vancouverman
New member
that sounds so much better...
please let us know more in march.
please let us know more in march.
Donna
I don't believe the blood clot was directly related; however what I believe caused it was the long hours stuck in traffic. Especially the last time we went there which was about 5 days before I noticed severe breathing problems as well as a rise in blood pressure and heart rate.
I spent almost 6 hours sitting either in a car or in a wheelchair in the hospital with only a few minutes of walking around. I rarely sit for more than an hour at a time at home and never use a wheelchair except for getting around in these huge hospitals.
The odds of pneumonia or an exacerbation after the coils are implanted are quite high (about 80%). I read the results of the coil trial in Europe and the incidence was quite high.
I don't believe the blood clot was directly related; however what I believe caused it was the long hours stuck in traffic. Especially the last time we went there which was about 5 days before I noticed severe breathing problems as well as a rise in blood pressure and heart rate.
I spent almost 6 hours sitting either in a car or in a wheelchair in the hospital with only a few minutes of walking around. I rarely sit for more than an hour at a time at home and never use a wheelchair except for getting around in these huge hospitals.
The odds of pneumonia or an exacerbation after the coils are implanted are quite high (about 80%). I read the results of the coil trial in Europe and the incidence was quite high.
Hi Jeanine, I am part of the RePneu Coil Study in South Africa. I had my right lung done in September and left lung done in Oct this year. I do feel a difference, especially on recovery. Both operations went well and no problems since. I have my next tests done on 27th Jan, which should show if there is a difference in my actual readings. I still have days when I am very breathless and other when I think that there is a huge improvement. I remain optimistic that as time goes by there will be even more improvement and I will have more lung capacity. I will keep you updated to my results after 27th Jan. If I can ask you how did you know you had a blood clot in your lung and how did they treat it. Was it due to the coils being placed ?
Kind reagrds Margz
Kind reagrds Margz
Margz
I didn't know I had a blood clot but the symptoms I had were different than anything I had ever experienced. I had the chills, low grade fever (between 98.9 and 99.6) for days, high blood pressure and heart rate and extreme short of breath. It was very scary. I had pneumonia as well.
I didn't know I had a blood clot but the symptoms I had were different than anything I had ever experienced. I had the chills, low grade fever (between 98.9 and 99.6) for days, high blood pressure and heart rate and extreme short of breath. It was very scary. I had pneumonia as well.
Update to my Renew Coil Trial
I had 10 coils placed in my left lung on April 9th, 2015. The surgery went well and I was eating a turkey dinner 4 hours later and went home the next day. I felt pretty good for a few weeks, but once again ended up in the hospital with pneumonia for 5 days. It's been about 10 days since I was discharged and I think I am back to where I was before the second set of coils were inserted. My FEV1 has gone from 21% to 33% so far but I was told it takes up to 6 months to achieve the final results. I am heading to Beth Israel on June 2nd for my first checkup and PFTs plus 6 minute walk. Will post the results when I receive them.
PS: for those who are new to this story. I now have 20 coils in my lungs. The first 10 were placed in my right lung last September.
I had 10 coils placed in my left lung on April 9th, 2015. The surgery went well and I was eating a turkey dinner 4 hours later and went home the next day. I felt pretty good for a few weeks, but once again ended up in the hospital with pneumonia for 5 days. It's been about 10 days since I was discharged and I think I am back to where I was before the second set of coils were inserted. My FEV1 has gone from 21% to 33% so far but I was told it takes up to 6 months to achieve the final results. I am heading to Beth Israel on June 2nd for my first checkup and PFTs plus 6 minute walk. Will post the results when I receive them.
PS: for those who are new to this story. I now have 20 coils in my lungs. The first 10 were placed in my right lung last September.
I'm holding my own and doing much better than I did before any coil treatment. I feel like I have some type of life where I can make plans and not have to wonder if I will be too short of breath to leave the house. I was very fortunate to have been selected for this trial.
Visited Beth Israel on Tuesday, June 16, 2015 for a follow-up visit, PFT and 6 minute walk.
Technician who performed the PFTs was unable to tell me the results due to the nature of the trial, but I kept track of how far I walked based on how many times I walked past the cones and it was about 950 feet. That is at least 250 feet more than I have ever walked in a 6 min walk. Plus, I didn't have to stop to catch my breath. On my home Peak Flow I am showing my FEV1 as .89 Liters or 37%. Prior to having coils my FEV1 was .51 liters or 21% Not a cure but definite improvement. The biggest change is the at least 70% less shortness of breath. Although the coil trial has closed, there are several valve trials still accepting patients., Visit http://www.clinicaltrials.gov and type emphysema and valves in the search box.
Technician who performed the PFTs was unable to tell me the results due to the nature of the trial, but I kept track of how far I walked based on how many times I walked past the cones and it was about 950 feet. That is at least 250 feet more than I have ever walked in a 6 min walk. Plus, I didn't have to stop to catch my breath. On my home Peak Flow I am showing my FEV1 as .89 Liters or 37%. Prior to having coils my FEV1 was .51 liters or 21% Not a cure but definite improvement. The biggest change is the at least 70% less shortness of breath. Although the coil trial has closed, there are several valve trials still accepting patients., Visit http://www.clinicaltrials.gov and type emphysema and valves in the search box.