Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 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 > 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 Peggy E. We all sometimes carry our situations into others and it just needs clarification for others. I do have one question. You indicate the form of ILD is unknown yet you keep referring to it as IPF. IPF is a specific form so I'm wondering if yours might be one of the others. > > > > > > 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...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Hi Bruce,I don't know. I'll let you all know when or if I know more. Dr. R. uses the terms interchangeably with me. I don't know why - I'll ask him when I see him. He told me I have ILD at this point it is idiopathic because I won't risk the biopsy. I believe because of the circumstances of how I got sick and what is helping that it was caused by the stomach acid. There have been incidences where it did cause IPF. I'm tired and have to get up in the middle of the night to take my husband to SeaTac so he can go to Denver for 2 weeks to be with his father who is receiving dialysis while his mother gets an aortic valve replacement. We have contractors scheduled to work on the house. Honestly all this is a little overwhelming for me. Earlier in the day I was so happy because I was thinking/hoping that maybe I will remain stable. Good night,Peggy ESubject: Re: StefaniTo: Breathe-Support Date: Tuesday, June 16, 2009, 5:51 PM Peggy E. We all sometimes carry our situations into others and it just needs clarification for others. I do have one question. You indicate the form of ILD is unknown yet you keep referring to it as IPF. IPF is a specific form so I'm wondering if yours might be one of the others. > > > > > > 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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