Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 I just wanted to weigh in on the VATS issue. I had it done in 2/07 they sent it to the Mayo clinic for the 2nd opinion . Well both said IPF, turns out they were wrong . I have pulmonary fibrosis but it is caused by the several auto immune diseases I have. So if I had the chance again I would not have the surgery. They can tell pretty well from x-rays and ct scans and it really isnt as easy as they say to recover , but in the end it is your decision and whatever it takes to give you piece of mind. IPF 2/07 IL Scleroderma Sjogren Raynauds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Hi Kiki,I couldn't find one reason in the world to have the test at least not with the treatments etc. and my health at the moment. I was talking one day to a nurse who works in ICU (she is a tennis player so we were playing and talking between games) and she said not to have it that a lot of the people who have them have all kinds of complications. It sure sounds like a lot of our members have had trials with it. I feel like as long as I am stable and I have been why rock the boat? It seems to me that there can be a pretty 'common sense' answer about what is causing the disease if people would only look hard enough. I still think that when I got sick to my stomach in April '07 I must have aspirated a lot of acid which caused me to be so acutely ill that summer and over the next several months I got better on my own and now just have this scar tissue where it was. I was perfectly fine and able to do all the normal athletic things one day and the next day I couldn't run down one ball without turning blue, having the world turn dark and nearly passing out. I bet my O2 sats were in the 70's. To me now with the GERD being treated it looks like that was it all along and it just took 'connecting the dots'. I'm happy with a "I'm 95% sure this is what is causing your disease" and no biopsy but maybe I'm a chicken.Peggy E 53 yo ILD 2008, stable and feeling pretty darn good considering!Subject: StefaniTo: "send msg" <Breathe-Support >Date: Tuesday, June 16, 2009, 12:57 PM I just wanted to weigh in on the VATS issue. I had it done in 2/07 they sent it to the Mayo clinic for the 2nd opinion . Well both said IPF, turns out they were wrong . I have pulmonary fibrosis but it is caused by the several auto immune diseases I have. So if I had the chance again I would not have the surgery. They can tell pretty well from x-rays and ct scans and it really isnt as easy as they say to recover , but in the end it is your decision and whatever it takes to give you piece of mind. IPF 2/07 IL Scleroderma Sjogren Raynauds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Hi Bruce,Forgive me if I implied anything for anyone other than my personal situation. I totally agree with your closing statement: Unfortunately, there are few absolutes, few rights versus wrongs, few things of which we're sure. So, all we can do is educate ourselves and make our best informed personal choice.That is exactly what I was doing. For ME, with my personal state of health it doesn't make sense and I was agreeing with another member who also felt that way. I would never try to talk anyone into or out of any kind of procedure, test, treatment. We all have our own unique disease(s) and situations and I am not a nurse or a doctor. I do think in my case there is a better than average chance that I got this disease by aspirating stomach acid. I had gotten violently ill a few days before my lungs took a nose dive to the floor. They recovered greatly and I nearly cancelled my appt at National Jewish Hospital because I was feeling so much better but the RN there suggested I keep the appointment. At that point I was 'doing well' and running on the treadmill and my sats dropped to 82% so I am guessing (as that is all I could ever do) that my sats had to be significantly below that when I was turning blue etc. while waiting for my appointment at National Jewish. The fact that my CT scan is showing no 'new areas' and every CT scan I had previously did show 'new areas' I am guessing that the omraprazole might have something to do with it especially since the inhaled steroids are no longer in the picture. Had they been helping my lungs might have been worse. I don't know what will happen tomorrow but there are people who have ONLY IPF who have remained stable for over 5 years after getting their GERD under control. I am betting (for myself) that in some situations it certainly can't hurt and if it only improves the quality of my life and not the quantity then so be it - I'm still HAPPY AS A CLAM. I'll continue to try to share information that might be helpful to others. It is good to have hope and I know that there are specific ILD's where this is not the case (sarcadosis for example). I only wanted to share my thoughts for my situation and why I came to the conclusion I did for myself. If nothing else it might help others see that they too can be empowered to make their own choices.PLEASE, DON'T THINK THAT I KNOW ANYTHING ABOUT YOUR SITUATION - I'm having enough trouble walking in my own shoes at the moment to even begin imagining what it might be like for you. The reason I don't always respond to many of the questions is that most of you have so much more experience and years with this disease than I do that I am dumbfounded. Thank God for people like Beth and you Bruce and others who can help.My apologies to anyone who misunderstood my comments,Peggy Ellis (humbly 53 yo. newbie to ILD - nothing specific since I will still refuse to have a biopsy but not judging anyone who is brave enough - quite the opposite)Subject: Re: StefaniTo: Breathe-Support Date: Tuesday, June 16, 2009, 4:13 PM Peggy E. I was out having fun when you joined here and missed the specifics of the form of ILD you have and how diagnosed. I'm assuming by CT since you haven't had a VATS. Have they expressed any strong opinion as to which ILD? We're jumping way ahead into assumptions here. I have to express some concern and make sure we are careful to separate opinion from fact and supposition from proven cause and effect. This is not intended to say your opinions are wrong, but there are opposite views on many of these subjects and you state them so firmly that I feel obligated to express the uncertainty as well. As to VATS, there are reasons to have it and not to have it. While you have chosen not to have it, many of us do have it for a variety of reasons. I had it to assist in making a treatment decision. I am not saying the VATS was easy. It wasn't. I had a tough time. However, I got the information I needed and the results were clear. They have been confirmed by three top pathologists. I have UIP with no Alveolitis. Therefore, I have chosen based on that not to use Prednisone. It just isn't believed by most to work in my specific situation. Were my situation different, I might have made different decisions. Others have VATS to be eligible for clinical trials. Some have them just to know what they have. Some have them to dismiss or confirm other diseases. I know many who have chosen not to have them and are comfortable with that decision. I know many who have had them and are glad they did, myself included. I know others who regret having it. Now as to GERD and IPF. It is believed approximately 9 of 10 with IPF have GERD, although many with no symptoms. However, Dr. Raghu makes it clear that no causal relationship has been proved and, in fact, that it would be nearly impossible to do so. Whether GERD causes IPF or IPF causes GERD or both are caused by similar causal agents, we just can't be sure. Furthermore the research is extremely limited. Outside of a clinical trial, which has not been conducted, there is no way to know for sure whether PPI's for GERD help slow the progression of IPF. A study with four subjects just doesn't. Many people with IPF go periods with no progression. This is much like prednisone for IPF. Just because one goes without progression doesn't mean that is what it can be attributed to. I have remained nearly stable for two years on nothing. This is why we have clinical trials, to get double blind scientific evidence. Do I believe controlling GERD is very important? Oh, yes...for many many reasons. Does it sound logical it could irritate the lungs? Yes, again. There are other studies unfortunately that show controlling the GERD impacts life quality but not the lifespan of one with IPF at all. I also dismiss those studies as not large enough or controlled well enough to be scientific fact, but just another man's hypothesis based on limited study. Before stage 3 clinical trials many meds are believed to be effective. Then they are often found not to be. On the other hand when there is overwhelming evidence based on clinical observation such as prednisone helping with NSIP then that can become accepted as medical opinion. Without VATS even the diagnosis can be in some question. When you take multiple meds such as PPI's and Prednisone, one can't know which helped. I'm certainly glad you've been helped by whatever combination of meds you've had and based on whatever form of lung disease you have. The fact you're doing better is all that really matters. However, this may not be the same for others. As little as we know about IPF and other ILD's to be 95% of the cause would really be stretching it. To say it appears pretty "common sense" to know what caused the disease if people would only look hard is saying most doctors and most of us have no common sense because I sure don't know the cause of mine nor does any doctor profess to know. I can list a dozen possibilities just from those listed by many. If its common sense then I guess we're wasting a lot of money on research to determine causes. However, fact is, we don't know. We have a list of things we believe may contribute toward the diseases but we just don't know. While you bet what your sats were, you don't really know. I can bet what mine were a year before my diagnosis only from feel today if I wasn't on oxygen. Being able to play tennis one day and not walk down the hall the next without turning blue generally isn't IPF without complications accompanying it. While under treatment we might feel better, I have no knowledge of any doctor professing IPF improving. I've read nothing representing the fibrosis in the lungs with IPF improving. Now, other forms of ILD's do sometimes improve. The inflammation that may accompany IPF can be helped by Prednisone. You're stable. You're doing well. I wouldn't probably want to rock the boat or change a thing in your situation. All I do ask is that we be very careful in expressing things as common sense and as causes and as certainties with a group of diseases (over 200 identified ILD's so far) about which we know so little. Those of us with ILD's have to make many decisions along the way. Unfortunately, there are few absolutes, few rights versus wrongs, few things of which we're sure. So, all we can do is educate ourselves and make our best informed personal choice. > > From: kiki boettin netwiz3@... > Subject: Stefani > To: "send msg" Breathe-Support@ yahoogroups. com > Date: Tuesday, June 16, 2009, 12:57 PM > > > > > > > > > > > > > > > > > > > > I just wanted to weigh in on the VATS issue. I had it done in 2/07 they sent it to the Mayo clinic for the 2nd opinion . Well both said IPF, turns out they were wrong . I have pulmonary fibrosis but it is caused by the several auto immune diseases I have. So if I had the chance again I would not have the surgery. They can tell pretty well from x-rays and ct scans and it really isnt as easy as they say to recover , but in the end it is your decision and whatever it takes to give you piece of mind. > > IPF 2/07 IL Scleroderma Sjogren Raynauds > Quote Link to comment Share on other sites More sharing options...
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