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Post by valerie on Mar 4, 2011 8:54:41 GMT -5
I have finally managed that the pnuemologist sends me to a bigger hospital to have a test on diffusion? and consequently to see if I can have this operation. I'm very doubtful, as they turned me down 4 years for Transplant because I had miocardio, in the left side of my heart and now my right side is weak too. Corpulmon. I have search in the old posts but nothing much has come to light. I'd appreciate to hear from those who have had the LVR surgery, how it was, was it worth all the risk etc. I understand that this operation is done very successfuly in the States. Any comments grateful.  |
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Post by Blossom/Jackie W. on Mar 4, 2011 10:02:21 GMT -5
I'd like to comment a bit more Valerie on your post but it'll have to be a bit later. Meanwhile.... there's 2 people I know off the top of my head, who are members here and who've had LVRS. WendyCO and Muffin (Arlene) If you go to the top of this category you'll see Wendy's LVRS journey. (She lives in the U.S.) Here's the link philns.proboards.com/index.cgi?board=wendy |
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Post by aero63 on Mar 4, 2011 20:23:12 GMT -5
I can't answer this personally for you, but just the opinions of the persons above. It can't hurt to go talk to them and maybe try the testing if they think.
Good luck
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Post by wendyco on Mar 7, 2011 19:44:31 GMT -5
Hi Valerie, I had LVRS in Oct 09 and would do it again in a heart beat.....the pre-testing is very thorough and I'm not sure if your heart issues would be a problem or not but that's why you go through the testing, to be sure you can have a successful outcome.
any questions, concerns etc etc et c that you have I would be more than happy to answer.......
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Post by valerie on Mar 8, 2011 9:32:12 GMT -5
Hi, and thanks for your reply. How are you now after 1 and half years, are you still better than you were before the op? How's the oxygen use more or less. After reading all your LVR diary and I must admit I started to chicken out, boy what a tes t of determination. However, I don't think I'll get past first step to find out about difusion levels. I was turned down for transplant because of my heart and the lung doctor has always said they would turn me down for the LVR too. But even so I felt I wasn't doing anything to prolong my life a bit and after 4 years of persuading him, he agreed to send me to a bigger hospital for difusion tests first. I have not been in hospital for 4 and half years now, (touch wood) and thought that maybe I'm not so bad as everyone, including myself, thinks. Well also I thought I'd like to be seen by other specialists, as one never knows what treatments and different ideas there are outside one's very restricted world. For example I might be able to find out if they are going to do 'coil' trials in Spain now. I was waiting on your reply and pleased you came in on this. Thanks
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Post by helen on Mar 8, 2011 12:00:00 GMT -5
On the Dutch forum there is one member (Vera) who had the lung volume reduction surgery over two years ago.
She is still doing extremely well and enjoying life to the full.
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Post by wendyco on Mar 8, 2011 20:29:54 GMT -5
Valerie I learned that even with a good doc, they can only learn so much without extensive testing.....I sure hope you will persue this, it can't hurt you and if nothing else you may find some new methods to help you out.....teaching/university hospitals are very good for this and they keep up on the newest....keep me posted, I care what happens............
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Post by valerie on Mar 25, 2011 14:46:42 GMT -5
Well I?ve seen the Thorax surgeon dept at a University hospital here where I went to do the diffusion spirometry test, is it the DCLO, but unfortunately the nurse controlling the test didn't seem to understand me and she didn't explain very well what I had to do, so I couldn't finish a good test. It left me without oxygen but without CO2 as well. When I saw the surgical team they explained it all and said more tests, first a ecocardiogram and a nuclear scan, then I'll see them again when I can do the diffusion test again. I still feel they will turn me down for my Congestive heart failure, but you know I feel a lot brighter just thinking there may be a small chance, and that can't be bad, can it? These appointments are going to take time, but I'll post when I know more. Thanks for your help all.
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Post by Blossom/Jackie W. on Mar 26, 2011 9:44:22 GMT -5
You just keep chipping away at it Valerie...... I know Wendy didn't think she had a shot at it but...... you just never know!
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Post by John on Mar 27, 2011 16:29:48 GMT -5
They say "opportunity happens to those who go & get it "  Go get it Valerie |
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Post by valerie on Mar 30, 2011 4:47:51 GMT -5
I was fishing in internet and I came accross an article about a hospital here in Spain completing successfully Biologic Lung volume reduction, in trial patients.. It's called The Aeriseal System using a type of foam/gel sealant which is injected into the bad parts of emphysemos lung by broncoscope. The bioabsorbable gel uses body's natural scar formation to collapse the deseased part of lung. The company is Aeris Therapeutics in Woburn Mas. I remember reading I don't remember where, a long time ago, that a woman was going to do trials with a new type of LVRS using a sort of foam. I wonder if anybody has read anything similar and better still, knows of this case. Any news welcome, thanks
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Post by Blossom/Jackie W. on Mar 30, 2011 6:52:50 GMT -5
Valerie; I get the impression that they weren't getting the results they had hoped for. It looked like the Study was in Phase 3 but was then withdrawn about a year ago. clinicaltrialsfeeds.org/clinical-trials/show/NCT00716053 I don't know what happened after that. What I would do is contact Aeris Therapeutics directly and ask them about it. Chances are you'll get a response. |
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Post by goof on Mar 30, 2011 8:29:12 GMT -5
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Post by valerie on Mar 31, 2011 7:08:46 GMT -5
Thanks all. Yes I had found that link too Goof. I feel they approve treatments in the EU a long time before he USA and in most cases before they have been tested adequately. What do think about a person living in Spain being in contact with a person in Holland, through a Forum based in Canada. Marvellous eh?
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Post by John on Mar 31, 2011 9:18:45 GMT -5
I second that Valerie |
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Post by goof on Mar 31, 2011 10:24:58 GMT -5
It surely is  |
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Post by valerie on Apr 11, 2011 13:29:12 GMT -5
This Wednesday I'm having a Prefusion scan. Have to go to Nuclear Medicine at the hospital, which word horrifies me for the danger it creates at only the mention of Nuclear and radiation. Is it normal to have this test for LVRS?
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Post by Blossom/Jackie W. on Apr 11, 2011 13:46:56 GMT -5
Hi Valerie..... I had to chuckle a little bit by your post. I remember when I had the scan done (also known as a VQ scan) but for different reasons..... anyway; I'll explain why further along re: the chuckle) Although I don't know for sure, I would suggest that yes that would be a normal part for LVRS testing. That type of scan basically looks to see how much air is flowing (in your lungs) and in what areas. They inject a bit of low dose radioisotopes normally; you shouldn't have any problem whatsoever. I've been more uncomfortable getting a flu shot! It's painless and it's quick. The reason I chuckled was becasue of two things...... one was that they also tell you that if you plan on flying in the next 48 hours(and I think you were even thinking of it at one point), you'd need a letter from the hospital/clinic stating you'd had this test. Probably becasue you'd set off some sensors. But also, for me, was that I actually tried getting up in the middle of the night like a fool (in the dark) to look at myself in the mirror to see if there was any glow! ;D Trouble is; I also fractured my toe in the dark, in the process......  |
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Post by chrisw on Apr 11, 2011 14:39:34 GMT -5
Hi Valerie, It is the only test (actually two tests done one after the other -ventillation and perfusion) that shows both what the blood flow and air flow in the lungs is. As such it is essential as a test before LVRS as it is the only practical method to determine what, if any, part of the lungs are most affected. As regards the radiation: The amount of radiation in the radioisotopes used for both tests is very small. The amount of radiation in the gas and injection together are about the same as the amount a person is naturally exposed to in 1 year. www.nhlbi.nih.gov/health/dci/Diseases/lvq/lvq_all.html |
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Post by susanny on Apr 11, 2011 15:18:28 GMT -5
Good luck, Valerie. It'll be ok, I'm sure.
Blossom, you are too funny! First the disappointment of no glow, then the frustration and pain of a broken toe. Just like a kid, ya think? Haha (have to admit I'd probably do the same thing though,)
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Post by valerie on Apr 12, 2011 14:31:30 GMT -5
Thanks all for the information. My, my what a laugh now Blossom with 'no glow and broken toe' but at the time it would have been painful and very inconvenient. I always get up tight when I have to do tests at hospitals and my stomach suffers as a consequence. Now, when I get anxious I'll try and picture you running aound with a bandage on your toe.
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Post by Blossom/Jackie W. on Apr 12, 2011 18:45:28 GMT -5
It was Valerie.... very painful (my baby toe) I stubbed in on the danged leg/foot of the bed.
Don't be uptight my dear and yes I too get "uptight" with tests; even now. But; the door with the radioactive sign is scarier than what they do.
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Post by valerie on Apr 14, 2011 6:57:50 GMT -5
Well, no problem after travelling 60 miles to Provincial Hospital I did the prefusion/ventilation test. Two injections as first one didn't show up. The doctor in charge of nuclear medicine had to ask me for what the test was as she couldn't read the nuemologist's writing......... typical eh! I must admit today I'm not so 'perky' as usual and have more sob. All in the mind I suppose, and last night I had a curios look but 'no glow'.
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Post by mary57 on Apr 14, 2011 7:19:49 GMT -5
Valerie, I'm glad you did these tests to see if you can have the reduction. One step at a time and you'll make it. So funny about the 'no glow', but at least you kept your toes safe. Now rest today, after all the 'stress' y'day you sure need it. When do you hear the results?
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Post by valerie on Apr 14, 2011 14:06:30 GMT -5
Hi, well still have to do a cardiogramafia but that will be at my local general and I'm still waiting to receive date, but soon I hope, then I have to repeat the spirotory test for DLCO levels as the first one I couldn't complete. Yesterday results are sent direct to nuemologist. Reading your journey I know all this testing etc takes it's due time. Have to learn to be more patient!
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Post by valerie on Apr 14, 2011 14:13:29 GMT -5
Do you know Mary, but I've just made a big boob of all time, I have got you confused with Wendyco and her LVRS journey. Please forgive me, must be the radiation from yesterday making me more light headed than usual.
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Post by mary57 on Apr 14, 2011 17:15:55 GMT -5
Don't worry about it, I get confused quite often too. So long as you are getting some rest, and it sounds like the tests are moving along for you. Patience is always a needed virtue, one I usually lack.
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Post by Deleted on Aug 3, 2014 19:42:46 GMT -5
Hi there. Dont worry about it guys. I got surgery too. When i'm in hospital i need clean water, but there is no clean water there. because their valves is not fix. |
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Post by jim on Aug 3, 2014 21:13:09 GMT -5
Hi Proboarding, thanks for posting. I'm confused, I don't know whether you are waiting to have the surgery or have already had it. Either way, I'm hoping that life is smiling on you. hug4U
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