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Post by helen on Feb 13, 2011 10:27:22 GMT -5
The patient is Annie, member of the Dutch COPD forum and I have her permission to put this here.  Don't know how to get rid of the advertisement next to the video  |
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Post by susanny on Feb 13, 2011 11:46:19 GMT -5
Thank you so much, Helen, and please thank Annie, too, for giving permission to post this video and her picture. What a beautiful woman she is! I would love to know some things, such as what her condition was pre-treatment, when she had the first procedure and what improvement she had, and how long until the other side was done and how she is doing now.
The video is so very well done, easy to understand, and makes me have hope. Do you know how many people have had the procedure done there? It is so exciting to me, and to others I'm sure.
I know that we've discussed the coils before. Does anybody remember if they are in trials for them here in N. America, either Canada or the US?
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Post by Blossom/Jackie W. on Feb 13, 2011 18:29:19 GMT -5
Ohhhhhhh Helen; Please, please thank Annie for this. I vaguely remember you telling us about this (Sorry; my memory's a bit cloudy though I could do a search here) When did she have it done? How is she doing? ? Please give her a BIG Hug for us! This was an excellent video! Very informative and very easily understood. I'd love to have this Dr for MY Dr! |
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Post by aero63 on Feb 13, 2011 18:51:20 GMT -5
Thanks for posting this. It is a very interesting video. Thank you too, Annie.
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Post by John on Feb 15, 2011 6:30:08 GMT -5
Thank you Helen, very interesting & Thank You Annie
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Post by valerie on Feb 15, 2011 8:45:06 GMT -5
Thanks for posting this video Helen and thank Annie. If they were to do it here, I'd definitely do everything I could to be included in the trials. Do you know if it is still in trial stages or are they now doing it generally, even if it is privately. The young doctor must give so much confidence to his patients. I too would be pleased to know how Annie feels now as to how she felt before the coil placements.
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Post by helen on Feb 16, 2011 10:23:59 GMT -5
Today I have posted your reactions on the Dutch forum. Sorry for the delay. What I know is that Annie became a member after the first coils were placed. She recently had a lung infection, but she is on the forum again. As soon as I get her answers I will start translating  and put it here. |
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Post by helen on Feb 16, 2011 14:07:27 GMT -5
Annie's letter to you:  Helen Before the coils were placed I was not doing well, while I kept doing sports. My lung Dr. asked me then if I was willing to go for a new treatment and I immediately said yes without knowing what it was, or if I could be considered for this. After three weeks Dr. Slebos rang me to make an appointment for the intake. After thinking it over for a few days I decided to do it. The appointments for both lungs were made at the same time, the second lung was treated four weeks after the first one. Immediately after the first treatment I felt like I was an other person, what a change! I can’t tell you how happy I was. After the second treatment I felt even somewhat better than before and still am enjoying it. At the moment I have a little trouble (the illness does not stop). After the treatment I feel much more comfortable and I feel like doing several things and everything goes much easier than before. The results of last check up in Groningen were good, the balance between in- and ex-haling is much better now and that is the most important thing for us. As anyone else I kept too much air inside and exhaling that goes easy now. Helen, I hope that I wrote this somewhat right and that you can translate again and send it!! I like to thank you for that, and if there are any more questions I will hear them. Lovely greetings, Annie I asked her to answer Sue's questions as well. (I could find some of the answers on the forum, but the search function does not work at the moment  ) |
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Post by John on Feb 16, 2011 16:15:45 GMT -5
Helen & Annie .Again  thank you |
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Post by susanny on Feb 16, 2011 23:38:19 GMT -5
Helen, thank you for asking Annie and translating for her. I really appreciate it. And please thank Annie, too. It is just so exciting to hear this, and I soooo wish I could do this treatment tomorrow. I guess I do have more questions. Did she have to go through a lot of pre-testing such as to find out which part of her lungs were affected by the disease? And did she have to do any physical rehabilitation afterwards? Might think of more after I hear her other answers.
God bless her bravery for trying something new. I am just thrilled that she is doing so well.
Sue
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Post by sandy07 on Feb 16, 2011 23:55:02 GMT -5
Helen...I think a lot of us are reading this and wondering about doing this ourselves...if it's available. Thank you for the work you are doing to put this on the forum and translate back and forth. Sue is asking the questions we would all ask. So when you answer we all read it. Aren't these forums GREAT. Thanks again Helen. |
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Post by helen on Feb 18, 2011 14:05:25 GMT -5
I found the hospital e-mail adres of Karin Klooster, the blonde woman in the video, so I asked her if the trial has ended yet.
And here is her answer:
Good morning Helen,
Thanks for you nice mesage.
The LVRcoil trial has now stopped including/treating new patiënts.
Of course patiënts still come to us for control visits.
In the Netherlands we have treated 38 people with the LVRcoils.
We expect to start a new LVRcoil trial this spring/summer; this trial will go on in several countries; maybe also in the US.
We also try to keep our website up to date.
Have a nice weekend!
With kind greetings,
Karin Klooster
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Post by valerie on Feb 18, 2011 14:26:04 GMT -5
This email is very interesting, I'm going to do my best to find out if any hospital here will be involved in the new trials in Spring/Summer.. Thank you both for the info.
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Post by susanny on Feb 19, 2011 0:38:44 GMT -5
Thank you so much again. My only wish right now is that the website offered language choices...Perhaps if I tried contacting them in English I would get a response as to how this first group is doing overall, and if/when a trial might happen here in the US.
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Post by zar on Feb 20, 2011 5:36:51 GMT -5
"Perhaps if I tried contacting them in English" Do you remember this?,There is no problem to send a email to her in English. Quote 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 patient............... Erin McGurk pneumrx.com) Sent: 27 April 2010 -------------------- You also may remember I was not excepted for the trail,not evey one is.I have met 4 people that have had it done,they seem to be happy with it. You may like to read this. www.newswire.ca/en/releases/archive/January2011/04/c8416.html
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Post by susanny on Feb 20, 2011 9:16:44 GMT -5
Thanks for the link, zar. Another bookmark on my computer for future research. The US is a huge country, as you are aware, so will be interesting to see how close something eventually gets to where I'm located. I doubt there will be any trials anywhere close to where I live, but hey, you never know. Should have been born somewhere more central to the country,  . I do not fly for any reason. Shouldn't be too many more years though. Then we have insurance to deal with. My dr has never had a cat scan done on me to see where my damage is in my lungs. He said they'd do all that when I went to be checked for a transplant. I'd like to know now so can stop wondering if eligible for something like these coils or an LVRS, but also don't want any unnecessary radiation. I do remember you were not accepted into the trial, what with your extenuating circumstances. But you also didn't give up on other trials possibly coming up. You are a fighter. |
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Post by zar on Feb 20, 2011 11:32:42 GMT -5
Sue, As you know I was offered two trials,one I did do and one I refused to do at the moment,but may go into it latter as I think its the only one so far for people with lungs like mine(like a sieve or tea strainer). . What I did notice with the people I met that had the coils,unless it was my imagination,they sound like they have ashma,I dont sound like that. I do have a appointment on the 27th of April for my six monthy check up,I will see what they have on the shelf then. |
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Post by Deleted on Mar 24, 2011 10:53:06 GMT -5
  to all of you!! I promessed Sue to send the results of 4 weeks after placing the valves. I hope I did it right, I'm no computer genius, on the conterary! The most important thing that came out (and is easy to understand I think), is that there is 1 liter less rest volume. I tried to translate the subscription written at the CT scan: * Ther's obviously a volume decrease (decrease in size of the left side); the whit part (see red arrow) on the picture on the right shows that a part of the lung has overlapped. Because of this ther's now created a lung volume reduction. During the lungfunction we measured a decrease of 1 liter rest volume. The more increase of the resvolume the better. The picture on the left is the one taken before the treatment, the one on the right, after the treatment.* At the moment I'm busy overcoming a virus, and though I'm not feeling well it's not as bad as it used to be, so maybe also while being ill I'll benefit from the extra air I got now thanks to the valves. I read something about the chartis system also here, they did use it this time here in Holland on 30 patients,they are now writing a protocol to be able to go on with the procedure but they advise not to use the chartis system on every patient. Most of the time the can allready see if it's going to be working by making, pictures of the lungs en ct scan. Anneloes. |
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Post by Blossom/Jackie W. on Mar 25, 2011 7:57:12 GMT -5
Anneloes..... you did just great getting this uploaded and translating! The PFT you're showing.... is the date of March 22nd? Also; if in fact the date was March 22nd, you mentioned you weren't well when they did it so will they be repeating the PFT when you're feeling better? Also, do you happen to have a copy of your PFT "before" the valve placement so that we can compare the two? I hope I'm not asking too much Anneloes but this is quite interesting and Bravo lady for having it done!  |
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Post by Deleted on Mar 25, 2011 11:10:56 GMT -5
Thanks for the compliment Jackie/Blossom (which name do you prefer?)! It is correct that the latest PFT was done on March 22nd, and indeed I was not feeling well. However the results were good enough for them to work with, in 6 months they are going to do the same tests again. On top op the list you see two dates, one is March 22nd, and on the left is Februari 16th, that's done one day before getting the valves. You als see pre and post standing on top. And you are not asking too much, I think it's very interresting to compare the way COPD is treated in your country and here. And realy, the treatment is such a small happening, I was quite scared before but if they call me tomorrow that the can also do my other lung, I'm going there with a big smile on my face!!!
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Post by mary57 on Apr 14, 2011 7:48:13 GMT -5
Thank you so much for sharing this with us Anne, and to Helen for posting in here. Such great easily understood information, is so hard to come by. This post would take all of my fears away were I to become elegible for this treatment.
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Post by valerie on Oct 3, 2011 5:47:06 GMT -5
I am wondering if Helen or Anneloes in Holland knows anymore news that they could tell us about the LVS Coils. How is Anneloes, or any one of the Dutch candidates now. Would be very pleased to hear from you. Thanks
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Post by annabob on Oct 3, 2011 18:43:47 GMT -5
Thankyou for all the information Helen & Annie. I am fairly new to this and I have never heard of this procedure before.
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Post by maryaz on Oct 3, 2011 21:02:32 GMT -5
Quite a few years ago I was translating words from a website to English. I think this is the link that I used. However, it was setup different when I used it. Thought some of you may be interested in this. You might want to search and see if you can find another website that translates. babelfish.yahoo.com/ |
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Post by zar on Oct 4, 2011 11:36:38 GMT -5
I have juast been reading over the posts for coils?and Isee some people are taking about valves whic are not the same?.Anneloes had the valves or am I wrong?.
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Post by valerie on Oct 5, 2011 4:23:40 GMT -5
I think Anneloes, or Annie ( her photo appears the first entrance on this page) had the metal Coils put in in Holland just like the video also on this page. The by-pass valves were not a success, but the coils had finished the initial trials and more trials were starting up on them, in more countries in Spring this year. If possible, would like to hear something more about the progress of the Dutch people who had metal coils placed in their lungs, as this procedure seemed very promising to me.
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Post by Blossom/Jackie W. on Oct 5, 2011 8:07:28 GMT -5
Valerie; I'll put up a post for Goof to your query and perhaps Helen will see it as well.
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Post by goof on Oct 5, 2011 10:13:15 GMT -5
Valerie, I asked the members of the Dutch forum who have undergone the treatment to mention their progress.
When they respond I'll translate and post it here
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Post by valerie on Oct 5, 2011 18:23:49 GMT -5
Much appreciated Goof. Will look forward to hearing any news.
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Post by goof on Oct 10, 2011 14:18:44 GMT -5
Valerie so far only one of the members of the Dutch forum has responded.
Some haven't been visiting the forum for a while due to sickness, health or other problems.
In her case the LVR coils haven't had the expected effect in the end.
As soon as I know more I'll report.
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and put it here.
Helen
)
. I do not fly for any reason. Shouldn't be too many more years though. Then we have insurance to deal with. My dr has never had a cat scan done on me to see where my damage is in my lungs. He said they'd do all that when I went to be checked for a transplant. I'd like to know now so can stop wondering if eligible for something like these coils or an LVRS, but also don't want any unnecessary radiation.
