Re:Todd

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LOL, Todd, Our Bruce is the info man. He will tell you so much you will have to weed through it.. I must sayit is all good information. Relax, It seems like you are in good hands. We are here to support you, listen to you, help you deal with life with the monster.Did I see you are not on 02 yet? That is surprising. Anyhow Keep us posted and we'll be here you are not alone in this fight.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." I think my nose might be bleeding. Are all newcomers grilled like this?The procedure is VATS. I have had a battery of tests to date includingwhat my pulminoligist determined using a CT scan to be PF. I havehoneycombing in my lower lobes, a very cloudy. Areas in it as well. Myspirometry test show I have 48 % capacity left. My doctor hears velcrowhen he listens to my lungs. I can't climb a set of stairs withoutbeing breathlessFrom my limited knowledge and research it does not seem to me that mydoc is basing his diagnosis on partial info. I think he wants to besure thru the biopsyOn 1/3/08, Bruce Moreland <brucemorelandgmail> wrote:> Well, we like a signature knowing who you are and your location and> diagnosis although I can't remember to put mine most of the time.>> Now, I know I'm asking some questions you can't answer, but they are> ones I would want to know before I'd submit to surgery.>> VATS is Video Assisted Thorocoscopic Surgery where they do the biopsy> with a camera and laparoscopically. They cut three small holes and> then leave a tube in one for you to drain after. Two are along the> side of your ribs and one on your chest(mine is about an inch and a> half below my nipple-the one used for the tube). When you say> pathologist are you meaning pulmonologist? Or really a pathologist?> The other form of a biopsy is an Open Lung Biopsy which is much more> serious a surgery although VATS is invasive itself as they remove a> piece of your lung.>> Did he not have you do a six minute walk to check your oxygen? If so,> how was it then? How has he decided you've got PF? I would definitely> say with the headaches that calls for monitoring your oxygen. In> fact, they need to know what your requirements are for the surgery> and recovery.>> I'd certainly talk to my surgeon and find out how many of the> procedures he's done and how many have had complications.>> VATS can detect some non PF issues but generally what its going to do> is to verify or determine what form of PF you have, whether its IPF> or one of the others. Now, that may be of benefit just because you> want to know or for future transplant or for clinical trials.> However, often its used for course of treatment. Therefore, if you> know you are or are not going to use prednisone regardless, then it> serves less purpose. While some believe Prednisone is helpful for> IPF, most don't see that or see minimal help. However, far more do> see benefit on other forms of PF.>> I'm confused a bit myself by some inconsistencies. Your doctor is> talking about getting you on the transplant list and yet not even> monitored your oxygen levels or at least, if so, determined you don't> need oxygen?>> I would want to have many more questions answered before the surgery> although if you do the biopsy doing it with a healthy lung is> important. But, with PF, doctors are to educate and advise you. You> have to manage your medical treatment and your life choices. You> haven't been given enough information to do so. Only submit to> surgery if you know why you're doing so. Only take medications if you> know why and both the benefits and side effects. Only enter a> clinical trial if you know completely what it involves. Only plan a> transplant if you understand what it involves and life after it is> like.>> This isn't like going to the doctor and he determines you have an> infection and prescribes an antibiotic. That is cut and dry. Nothing> related to PF is. We've all made widely different decisions.>> A very simple example is a survey we did on prednisone. 34 people> responded. 1 said they were never offered prednisone. 6 said they> decided not to use it. 10 said they have come off it or are in the> process. 13 said they are on it and have seen a benefit. 4 say they> are on it and have seen no benefit. This is complicated because there> are arguments as to its effectiveness on various forms and with most> people there are very severe side effects. There isn't a right> answer. Only a right one for you. And, you must be the one to make> it.>> Many here have chosen not to have a biopsy. Some did but wouldn't if> they were doing it over. Others of us had one and are glad we did.>> At the least before I had one I knew the nature of the biopsy, the> risks in it, had information on my oxygen levels including sleep,> knew why I wanted the biopsy and what my medication plans were> depending on the findings.>> What other medical conditions do you have? This might affect> decisions. Certainly knowing what is causing the headaches is> important-Shortage of oxygen, neurological problem, sleep problem?>> Your next meeting with your pulmonologist needs to be with a piece of> paper and a long list of questions. He may think that there isn't> need for a next meeting until after your biopsy. I think there's a> strong need. Also, I would absolutely want to talk to the surgeon at> length before agreeing. I might even want to get a second opinion> from another pulmonologist.>> From what I can tell Pulmonology is not a specialty area at the only> teaching hospital in your area, although there are quite a few> pulmonologists. Are you sure you don't want to go to Duke before your> surgery for an opinion or somewhere else?>> I'm just tossing a lot of things out but don't be pushed into> something until you're sure its right for you, whatever that is.>>> > > > >> > > > I actually live in ton SC. I have a friend in my church> > > that is part> > > > of Mercy Flights that provides free air travel at any time for> > > transplant> > > > recipients.> > > >> > > >> > > >> > > > I currently have no medications prescribed.> > > >> > > >> > > >> > > > I have a question which is related to my current diagnosis. I> have> > > > headaches every day starting in the afternoon that last the> rest of> > > the day.> > > > My lung specialist had no theories and I have not found any> link to> > > IPF.> > > > Has anyone experienced these?> > > >> > > >> > > >> > > > My lung biopsy is next week. It looks like I will be out of it> for> > > 48 hours.> > > > My pathologist was pretty certain that it is IPF after> reviewing my> > > tests> > > > but wants to rule anything else out. He also indicated that I> have> > > perhaps> > > > the best lung specialist in the area.> > > >> > > >> > > >> > > > Todd Miles, (h) © > > > >> > > >> > > >> > > > _____> > > >> > > > From: Breathe-Support > > > > [mailto:Breathe-Support ] On Behalf Of Beth> > > > Sent: Thursday, January 03, 2008 4:05 PM> > > > To: Breathe-Support > > > > Subject: Re: Glad to find this group> > > >> > > >> > > >> > > > Hi Todd and welcome to our corner of the internet. You have> found> > > what I> > > > think is the most amazing group of people I've ever had the> > > privilege of> > > > being in contact with.> > > >> > > > Are you in NC? I'm a new resident of Durham and am a patient of> > > Dr. Lake> > > > on at Duke. So far I'm very happy with the care I'm> > > getting. So far> > > > I'm still "too healthy" to be listed for transplant but I am> open> > > to that> > > > eventually if it becomes necessary. I had an open lung biopsy> in> > > June of> > > > 06. They initially thought I had IPF but that diagnosis was> > > refined to> > > > Fibrotic NSIP (non specific interstitial pneumonitis) I was on> > > prednisone> > > > for months but have now been off of it entirely for nearly a> year.> > > >> > > >> > > >> > > > Again, welcome and feel free to ask whatever questions you can> > > think of!> > > >> > > >> > > > Beth in NC Fibrotic NSIP 06/06> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Glad to find this group> > > >> > > > Just been diagnosed with IPF. Frustrating thing is I am> otherwise> > > > healthy, 46 yr old (past) runner, never smoked.> > > >> > > > I have a lung biopsy coming up to confirm what my lung> specialist> > > is> > > > certain of. Is there anything I should ask?> > > >> > > > Based on a confirmation my lung specialist is going to set up an> > > appt> > > > at Duke for getting on the list. Anything I should expect/ask> about> > > > this?> > > >> > > > Thanks so much.> > > >> > > > -Todd> > > >> > >> > >> > >> >>>>