Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 Welcome and Congratulations! It is great that you found this group before the birth of your child. My only advice at this point is to enjoy every moment! Take picture of your little ones feet before you start casting...we have a lot of baby pictures but not very many where you can really see his feet, and this is a regret of mine! It is great to compare before & after pictures...I have a timeline I made after each cast, but my true before pictures are not very good because I just took baby pictures at that point, not " feet pictures " , if that makes sense. Second, there might be pressure at the hospital when you deliver to begin treatment immediately. You will need to be adamant about not starting with any other doctor than the one you have chosen. Good luck and enjoy your little one! Kaci (mom to , 12/17/05, bcf, FAB 18/7) > > Hi, > > My name is Ana, and I am expecting my first child in a few weeks. At > my 20 week ultrasound our perinatologist noticed that the baby had > bilateral clubefeet. > After some research we decided to go with the Ponseti Method. We had > our prenatal consultation this morning, and we are very happey with > the decision. > I was just wondering if anyone had any suggestions for us? > > Thanks > > Ana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Shelly, I have a son who will be 5 in August. We have been seeing Dr. Dobbs since he was 2 weeks old. He is a wonderful doctor, you will love him! We are from KY and travel to see him--he's worth every mile! He truly cares about his patients. I just can't say enough good things about him. If you would like me to call you if you have any further questions just e-mail me with your phone # pammi_kay@... Pam > > Hello. My name is Shelly, and my 3 month old daughter has bilateral > club feet. We were seeing a doctor locally, but my daughter's casts > kept slipping. I emailed Dr. Ponseti, and after seeing some of my > daughter's pictures he advised me that has atypical clubfeet. > We are going to see Dr. Dobbs at the Shriner Hospital in St. Louis > July 17th, and I am very excited. If any of you have experience with > Dr. Dobbs, please let me know what you think of him. Thanks!! > > Shelly in KS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 > > Hi all! New member here! My name is Janet, and I am newly divorced > mother of two boys. Looking forward to connecting with other and > making new aquaintances! > > > -Janet > Welcome, Janet Are you following the SCD Diet for yourse;f or a family member? Carol F. SCD 6 years, celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Hi , I am new to the diet so I don't have any advice for you but there are plenty of people who do. I wanted to tell you that my son eats Vaseline, chapstick, toothpaste, lotions etc, etc. I have always wondered why or what might be in them...the toothpaste is obvious (sugar, strong sweet flavors) but Vaseline? If anyone can tell me what it is I would appreciate it....I apologize if this is a little off topic. Hinojosa 3yr old boy, ASD, Began SCD Feb 14, 2007 [Norton AntiSpam] new member Hello, My name is Thatcher and my son is 3. An SP, 2 PT's and an OT have pointed out his signs of ASD. He has had many of the typical issues since birth. So this month we're going off island to get him diagnosed officially. I was mentioning his problems to my hydrotherapist and he told me about BTVC. I ordered the book and am following the website. I started with 2 days of cutting out some major startches that he had been having and then began the intro diet on March 2. The first day on the intro diet he began sleeping at 10:30 and either slept or needed someone to be with him on a futon in the living room. He was warm (usually is a cold child) and crying. He threw up his broth with cooked carrots at first but we were able to get some in him at dinner and he kept it down. Day 2 was a better day and he got by with just 2 naps and got outside and played. He ate the intro foods well. He has been straining on the toilet the last 2 days (despite loads of water spiked with grape juice) with one constipated stool ea. day (usually his stool is runny or very loose, undigested food remains and he has several a day). Since it could take a while for the book to arrive (it's usually a sloooow boat to Hawaii!)I have a couple questions. 1) I went to the GI Pro Health website and am confused on what is important to order right now...enzymes, minerals, pro biotics...etc 2) When do I start with probiotics or any of these other things? 3) When do I start him on the yogurt? 4) Since it's illegal in HI to buy raw goat milk and I don't have access to a goat, can I use canned/powdered goat milk to make the yogurt? Thank you sooo much for this group. It has been very helpful. Even things like the 'toothpaste' info helped since I never thought of how he likes to eat his toothpaste (along with other non-food items unfortunately). I hope this post is not too lengthy or lacks the proper info. This is all is a great 'stretching' excersize for me! But I really appreciate being able to run this by someone. I'm really hopeful about this diet. Thanks for your time and any help, Thatcher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Welcome, .... It sounds like you have seen some classic " die-off " symptoms in your little guy. Baths with epsom salts may really help him to feel better. Try the " Electrolyte Drink " on Elaine's website, www.breakingtheviciouscycle.info, in the " Knowledge Base " under " E " . We often get reports that this really helps with constipation, which is fairly common in the beginning. It doesn't taste super wonderful, but even if you can get him to take a few swallows, several times throughout the day, it would help. Another thing you might try is to add a supplement of magnesium oxide or magnesium citrate. Look for one that has no added illegals... you can compare the label to the list of legal/illegal supplement additives on www.pecanbread.com , under " Supplements " . As far as products from GI Pro Health, we send SCD parents there for their non-dairy-based acidophilus.... and/or their yogurt starter. These are especially for families that want to remain completely free of any cow dairy.... even the slightest trace. You don't have to use their products, but their SCDophilus is one that many SCD families do use. I'm honestly not familiar with any of their other supplements.... just the yogurt starter. Other than acidophilus, and possibly some magnesium, I would not be in a big hurry to add more supplements just now. It has been my experience that kids get off to a better start on SCD with as few supps on board as possible. I'm a big fan of cod liver oil, and magnesium, but beyond that..... I usually suggest waiting until the diet is well-established. We usually suggest waiting at least a few weeks to start yogurt, for kids that were dairy free prior to starting SCD. That way, the child is past any initial die-off response from the diet itself, and it can be made very clear what, if any, reaction there is to introducing the yogurt..... or additional die-off that can sometimes be triggered by the probiotics in the yogurt. Yes, you can use the powdered goat milk, as long as you reconstitute it to just the normal goat milk proportion/consistancy. Don't add extra milk powder in an effort to get a thicker yogurt. I am not sure about the canned goat milk. I should be fine, as long as nothing has been added..... just 100% pure goat milk. Patti, one of several list moderators new member Hello, My name is Thatcher and my son is 3. An SP, 2 PT's and an OT have pointed out his signs of ASD. He has had many of the typical issues since birth. So this month we're going off island to get him diagnosed officially. I was mentioning his problems to my hydrotherapist and he told me about BTVC. I ordered the book and am following the website. I started with 2 days of cutting out some major startches that he had been having and then began the intro diet on March 2. The first day on the intro diet he began sleeping at 10:30 and either slept or needed someone to be with him on a futon in the living room. He was warm (usually is a cold child) and crying. He threw up his broth with cooked carrots at first but we were able to get some in him at dinner and he kept it down. Day 2 was a better day and he got by with just 2 naps and got outside and played. He ate the intro foods well. He has been straining on the toilet the last 2 days (despite loads of water spiked with grape juice) with one constipated stool ea. day (usually his stool is runny or very loose, undigested food remains and he has several a day). Since it could take a while for the book to arrive (it's usually a sloooow boat to Hawaii!)I have a couple questions. 1) I went to the GI Pro Health website and am confused on what is important to order right now...enzymes, minerals, pro biotics...etc 2) When do I start with probiotics or any of these other things? 3) When do I start him on the yogurt? 4) Since it's illegal in HI to buy raw goat milk and I don't have access to a goat, can I use canned/powdered goat milk to make the yogurt? Thank you sooo much for this group. It has been very helpful. Even things like the 'toothpaste' info helped since I never thought of how he likes to eat his toothpaste (along with other non-food items unfortunately). I hope this post is not too lengthy or lacks the proper info. This is all is a great 'stretching' excersize for me! But I really appreciate being able to run this by someone. I'm really hopeful about this diet. Thanks for your time and any help, Thatcher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 > Welcome Have a look at www.pecanbread.com Study each of the links. This will answer many of your convccerns, perhaps as well as the book as it is geared to ASD. Carol F. SCD 7 years, celiacI hope this post is not too lengthy or lacks the Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2007 Report Share Posted March 5, 2007 Thank you Patti for your info. We did the electrolyte drink which he loved and Epsom bath. Today he had a softer stool but it was nearly black. The loose stools he used to have were blond. The 'sandy gritty " stool post was enlightening as it's perplexed me too. He's just 4 days into SCD and a two amazing things happened! Could it be working this soon? He ate last night entirely by himself for the FIRST time in his life (clumsy as you can imagine but with intention). No head banging, doing repetitive tapping w/the spoon or screaming fits that usually happen at mealtimes. My family was whooping it up for him. Then this morning I said " thank you " to him for something and he poked his head around the corner and said " we-come " with a big smile. I almost fell off my seat! Thank you everyone for your posts and information. Thatcher new member Hello, My name is Thatcher and my son is 3. An SP, 2 PT's and an OT have pointed out his signs of ASD. He has had many of the typical issues since birth. So this month we're going off island to get him diagnosed officially. I was mentioning his problems to my hydrotherapist and he told me about BTVC. I ordered the book and am following the website. I started with 2 days of cutting out some major startches that he had been having and then began the intro diet on March 2. The first day on the intro diet he began sleeping at 10:30 and either slept or needed someone to be with him on a futon in the living room. He was warm (usually is a cold child) and crying. He threw up his broth with cooked carrots at first but we were able to get some in him at dinner and he kept it down. Day 2 was a better day and he got by with just 2 naps and got outside and played. He ate the intro foods well. He has been straining on the toilet the last 2 days (despite loads of water spiked with grape juice) with one constipated stool ea. day (usually his stool is runny or very loose, undigested food remains and he has several a day). Since it could take a while for the book to arrive (it's usually a sloooow boat to Hawaii!)I have a couple questions. 1) I went to the GI Pro Health website and am confused on what is important to order right now...enzymes, minerals, pro biotics...etc 2) When do I start with probiotics or any of these other things? 3) When do I start him on the yogurt? 4) Since it's illegal in HI to buy raw goat milk and I don't have access to a goat, can I use canned/powdered goat milk to make the yogurt? Thank you sooo much for this group. It has been very helpful. Even things like the 'toothpaste' info helped since I never thought of how he likes to eat his toothpaste (along with other non-food items unfortunately). I hope this post is not too lengthy or lacks the proper info. This is all is a great 'stretching' excersize for me! But I really appreciate being able to run this by someone. I'm really hopeful about this diet. Thanks for your time and any help, Thatcher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 , All kinds of color changes in the stool are very common in the beginning, as gut pathogens die off. YES.... SCD could be working this soon! What great news! I'm thrilled for you. I just love those " almost fell off my chair " moments. Patti Re: new member Thank you Patti for your info. We did the electrolyte drink which he loved and Epsom bath. Today he had a softer stool but it was nearly black. The loose stools he used to have were blond. The 'sandy gritty " stool post was enlightening as it's perplexed me too. He's just 4 days into SCD and a two amazing things happened! Could it be working this soon? He ate last night entirely by himself for the FIRST time in his life (clumsy as you can imagine but with intention). No head banging, doing repetitive tapping w/the spoon or screaming fits that usually happen at mealtimes. My family was whooping it up for him. Then this morning I said " thank you " to him for something and he poked his head around the corner and said " we-come " with a big smile. I almost fell off my seat! Thank you everyone for your posts and information. Thatcher Recent Activity a.. 16New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Hi, The first thing is try to not fear this monster. I am so sorry you need us but you will learn how to live with this disease here. You could never find a better group. Everyone here is helpful. Ask anything, vent all you want or need.We all fight it head on as much as possible. Go on line and order an oximeter. you can find them for about 65.00they are life savers. They help you keep track of your saturation and you will know when you need to slow down. Your Dr. will probably tell you you will drive yourself nuts with it but I am sure everyone on this board will agree, get one ASAP.God Bless you with strength and peace. Love & PrayersPeggy, IPF 2004 I am new to the group. I went to the ER September 14th for shortness of breath and extreme fatigue. My CT showed scarring in my lungs and I had a blocked coronary artery. I had a stent put in my artery the next day. My pulmonologist performed a lung function test and determined that I have interstitial lung disease (moderately severe). He then performed a broncoscopy but did not get a diagnosis. He wants to do an open lung biopsy but the cardiologist does not want me to stop taking Plavix and it is dangerous to have the surgery. I am not waiting until June to see if I can stop the Plavix for the biopsy. I feel like I am in limbo waiting. I have good days and days with much shortness of breath. I am not on oxygen yet. Will the wait make things much worse for my lungs? Thanks for your help... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 DS I don't know where you are or where these doctors are nor even your name for that matter. However, the first thing that strikes me is a need for you to get to a teaching hospital with an ILD center such as one of the IPF Centers of Excellence. You have a very complicated situation and most doctors and facilities are not well equipped to deal with it correctly. You need to have copies of all that has taken place and understand the reports. Was it a HRCT (High Resolution) and did it indicate an Interstitial Lung Disease? Did it give a clue as to which one? I'm assuming it did at least indicate one based on the scarring you mention. What were your PFT's like. Was it the CT or the PFT's that led the pulmonologist to say ILD? What did the broncoscopy indicate? If you haven't seen the report make sure you get a copy. Now he wants to do what you refer to as an open lung biopsy but I'm assuming it would be a VATS. You're not on oxygen. Then how bad are your lungs? What are your PFT's? How much is related to your artery issues and perhaps heart related? Yes, I've asked a lot of questions but I'd want answers to all those by doctors expert in the diseases before deciding to do anything else. I understand your cardiologist's hesistation and it sounds like most immediately your arteries put you in more danger than your lungs did. If thats the case, maybe they get the immediate priority. If your interstitial lung disease is " moderately severe " then you should be on oxygen. Did you have a six minute walk? What is your oxygen saturation like at the end of six minutes of exertion or during activity? If he didn't check that and only checked your saturations at rest then he doesn't have adequate knowledge of pulmonary fibrosis. But " moderately severe " and " no oxygen " don't fit. I guess perhaps I'm moderately severe but if I wasn't on oxygen my saturation would drop to the 80%'s walking across the room and the 70's with moderated exertion and even 50's and 60's while under greater exertion. Yet, I can sit here on the sofa typing and I'm at 95% right now with no oxygen on. I'm guessing you probably don't have an oximeter. If not, get one immediately. Will the wait make things that much worse on your lungs? No one knows because we don't know what is wrong with your lungs or whether its something that could and should be treated. Will getting off Plavix and having a very invasive surgery (which the biopsy is) put you at greater risk? Very well might. And I certainly wouldn't take that risk without being absolutely sure why I was doing to and that the alternatives had been carefully thought out. I don't know where you are to recommend a facility to go to, but some of the better ones for ILD's are listed here: www.ipfnet.org Don't let anyone make you feel pressured to jump into something. If you don't even need oxygen yet you're not in an situation that you should panic and undertake risk to have an invasive procedure that may or may not provide any useful information. Have you had full labs for connective tissue diseases? If not, you need those as well (an ILD center would do so). How old are you? I ask because that could give some clue into certain likelihoods although nothing absolute. I know I've probably confused you even more, but these are the types questions we'll help you work through so you can understand. It's not a simple situation and not one to jump into a biopsy without knowing much more than you've shared with us at least. > > I am new to the group. I went to the ER September 14th for shortness of breath and extreme fatigue. My CT showed scarring in my lungs and I had a blocked coronary artery. I had a stent put in my artery the next day. My pulmonologist performed a lung function test and determined that I have interstitial lung disease (moderately severe). He then performed a broncoscopy but did not get a diagnosis. He wants to do an open lung biopsy but the cardiologist does not want me to stop taking Plavix and it is dangerous to have the surgery. I am not waiting until June to see if I can stop the Plavix for the biopsy. I feel like I am in limbo waiting. I have good days and days with much shortness of breath. I am not on oxygen yet. Will the wait make things much worse for my lungs? Thanks for your help... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 DS Bruce,as always, did such a wonderful job psting to your quiry. Before I thought any further about having an open-lung biopsy, I would go to that website, and then make an appointment with one of the ILD centers of excellence. Until then, purchase and use an oxymeter daily, and you'll begin to understand your oxygen needs well enough o discuss them with your pulmonologist. Any pulmonologist worth his/her salt should be more than willing for you to have a second oinion. Welcome to the group. As you can already see, this is a place to come for information, undestanding as well as a place to just speak your mind about what life fois like after diagnosis. Several of us have lived long beyond what you might expect after reading about PF, so take heart, and most of all, take good care of yourself. Jerry/Mississipp54/IPF/dx April05Who believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Good morning and welcome to Breathe Support. I always have mixed feelings in welcoming a new member...glad you found us but sorry you have reason to look for us. You don't mention where you are so it's impossible to make specific suggestions but I can't recommend strongly enough that you seek out a specialist in interstitial lung disease. Bruce already posted this link but I'll post it again for good measure. www.ipfnet.org There are listed I think, 22 different university medical centers with the kinds of specialists that we need. If you are not near one of these, let us know where you are and we may be able to make suggestions. This is not to say your pulmonologist isn't perfectly competent. The reality however is that ILD's are fairly uncommon and most community based pulmos don't see a lot of it. For the most part they treat things like emphysema, asthma, COPD and these are completely different from what we are dealing with. You mention that you've had a ct scan. High resolution ct scans are the standard to be able to gain useful information with ILD's. If you haven't had one, it's absolutely necessary. That alone may give you a very good idea of which ILD you actually have. You need to have screening bloodwork for all kinds of connective tissue/auto immune diseases. An extremely detailed personal history needs to be taken. All of these things can and will be done in a place where they see ILD's every single day. Your cardiac issues make surgery much more problematic. To me this is all the more reason to seek out experts in your lung disease. If at some point you do decide to have a biopsy, you want to have it done where your complete situation is taken into account. Have you had a 6 minute walk? If not, ask your doctor. That will help determine whether you actually need oxygen. I'm confused about your "moderately severe" diagnosis but not needing oxygen. In the meantime buy yourself an oximeter. You can buy one for about $65 here: http://www.portablenebs.com/choiceoximeter.htm You want to make sure your O2 saturations stay over 90%. Check when you're moving around, walking, carrying groceries etc. If they are consistently dropping below 90, please let your doctor know immediately. Low oxygen levels will stress your heart which is not what you need. Keep reading the board and asking questions. There is no such thing as a dumb question. We all understand what you are going through. We help each other and somehow that does make the journey a bit easier. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, December 26, 2009 10:16:12 PMSubject: new member I am new to the group. I went to the ER September 14th for shortness of breath and extreme fatigue. My CT showed scarring in my lungs and I had a blocked coronary artery. I had a stent put in my artery the next day. My pulmonologist performed a lung function test and determined that I have interstitial lung disease (moderately severe). He then performed a broncoscopy but did not get a diagnosis. He wants to do an open lung biopsy but the cardiologist does not want me to stop taking Plavix and it is dangerous to have the surgery. I am not waiting until June to see if I can stop the Plavix for the biopsy. I feel like I am in limbo waiting. I have good days and days with much shortness of breath. I am not on oxygen yet. Will the wait make things much worse for my lungs? Thanks for your help... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Thank you all for your ideas and support. My name is Donna and I live in Lafayette Indiana. I am 59 years old. Bruce, The HRCT showed scarring. I have had two. The PFTs led to the ILD diagnosis. The doc said the PFT diffusion results showed moderately severe disease. He said the broncoscopy did not provide a diagnosis. I do not have copies of any of my test and need to get them. The pulmonologist sent me to a Rheumatologist due to some abnormal test results. The Rheumotologist ruled out inflammatory diseases. Sure sounds like I need to learn more about my results. It has been so confusing with all the different docs. Thank you again. > > > > I am new to the group. I went to the ER September 14th for shortness > of breath and extreme fatigue. My CT showed scarring in my lungs and I > had a blocked coronary artery. I had a stent put in my artery the next > day. My pulmonologist performed a lung function test and determined > that I have interstitial lung disease (moderately severe). He then > performed a broncoscopy but did not get a diagnosis. He wants to do an > open lung biopsy but the cardiologist does not want me to stop taking > Plavix and it is dangerous to have the surgery. I am not waiting until > June to see if I can stop the Plavix for the biopsy. I feel like I am > in limbo waiting. I have good days and days with much shortness of > breath. I am not on oxygen yet. Will the wait make things much worse > for my lungs? Thanks for your help... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Donna If the HRCT didn't lead to ILD diagnosis then the PFT can't. DLCO on a PFT can vary widely between two times and if this was your first time doing a PFT you could have been lousy at it. It is not uncommon to show 50% one time and 35% the next then 50% the third. The more common way of distinguishing obstructive versus restrictive is to look at the relationship between the FVC and the FEV1 but thats far from foolproof as well on just one test. If you believed my test from February 2008 I'd long ago have been dead, but my problem (I figured out later) was the mouthpiece was too large for me. As to the rheumatologist, an ILD center typically checks for far more things than a regular rheumatologist. Now, my current rheumatologist is very thorough but I had one who basically was looking for Lupus or RA and if you didn't have those, he was through. As Beth pointed out too, your history and clinical observations are very important to the diagnosis. So, first steps in taking control are 1-Order an oximeter, 2-Get copies of all your tests and labs and reports and digital copies of your CT's, 3-Get to an ILD center for a second opinion. On your CT, did they have you do a lot of breathing in and out and holding? The average doctors facility does not have HRCT, just CT. Also, for ILD's they go back and do CT's with you inspiring and exhaling to focus on the lungs and not the chest in general. So, even those on the same equipment are done following a different protocol. I know again it's overwhelming but you do the three things I'm indicated above and stay with us here and you'll feel much more in control. Only when you know more will you know whether a VATS biopsy makes sense or whether monitoring it further is more appropriate. > > > > > > I am new to the group. I went to the ER September 14th for shortness > > of breath and extreme fatigue. My CT showed scarring in my lungs and I > > had a blocked coronary artery. I had a stent put in my artery the next > > day. My pulmonologist performed a lung function test and determined > > that I have interstitial lung disease (moderately severe). He then > > performed a broncoscopy but did not get a diagnosis. He wants to do an > > open lung biopsy but the cardiologist does not want me to stop taking > > Plavix and it is dangerous to have the surgery. I am not waiting until > > June to see if I can stop the Plavix for the biopsy. I feel like I am > > in limbo waiting. I have good days and days with much shortness of > > breath. I am not on oxygen yet. Will the wait make things much worse > > for my lungs? Thanks for your help... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Bruce, Again, thank you. I have another PFT scheduled in March. I really respect my pulmonologist and think I will discuss going to a ILD center with him in March. I am ordering the oximeter today. I did lots of breathing in, out and holding my breath for the CT. You have given me lots to think about. I appreciate your help very much. Donna Re: new member DonnaIf the HRCT didn't lead to ILD diagnosis then the PFT can't. DLCO on aPFT can vary widely between two times and if this was your first timedoing a PFT you could have been lousy at it. It is not uncommon to show50% one time and 35% the next then 50% the third. The more common way ofdistinguishing obstructive versus restrictive is to look at therelationship between the FVC and the FEV1 but thats far from foolproofas well on just one test. If you believed my test from February 2008 I'dlong ago have been dead, but my problem (I figured out later) was themouthpiece was too large for me.As to the rheumatologist, an ILD center typically checks for far morethings than a regular rheumatologist. Now, my current rheumatologist isvery thorough but I had one who basically was looking for Lupus or RAand if you didn't have those, he was through.As Beth pointed out too, your history and clinical observations arevery important to the diagnosis. So, first steps in taking control are1-Order an oximeter, 2-Get copies of all your tests and labs and reportsand digital copies of your CT's, 3-Get to an ILD center for a secondopinion.On your CT, did they have you do a lot of breathing in and out andholding? The average doctors facility does not have HRCT, just CT. Also,for ILD's they go back and do CT's with you inspiring and exhaling tofocus on the lungs and not the chest in general. So, even those on thesame equipment are done following a different protocol.I know again it's overwhelming but you do the three things I'm indicatedabove and stay with us here and you'll feel much more in control. Onlywhen you know more will you know whether a VATS biopsy makes sense orwhether monitoring it further is more appropriate.> > >> > > I am new to the group. I went to the ER September 14th forshortness> > of breath and extreme fatigue. My CT showed scarring in my lungsand I> > had a blocked coronary artery. I had a stent put in my artery thenext> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to doan> > open lung biopsy but the cardiologist does not want me to stoptaking> > Plavix and it is dangerous to have the surgery. I am not waitinguntil> > June to see if I can stop the Plavix for the biopsy. I feel like Iam> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things muchworse> > for my lungs? Thanks for your help...> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Bruce......When I had the CT scan at U of C I told my husband that was the first time I had ever been told to hold my breath several different ways during the scan. I had three previous scans done locally and never had to hold my breath. Another incentive to get to a teaching hospital. Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Donna I personally wouldn't wait until March to schedule at one but your pulmonologist should be in favor. We're not talking about respect for a pulmonologist but we're talking about what they deal with every day. An ILD center only deals with ILD's. A typical pulmonologist will have no more than 1 or 2 patients with ILD's and some have none. I have a great local pulmonologist who does have PF experience, but I still go to ILD centers for more expertise. My local rheumatologist, I also respect greatly, but he's the one pushing me hard to go to Duke for another review. There is just too much disconnect when you're told " moderately severe " and you're not put on oxygen. Did you have a 6 minute walk test? > > > > > > > > I am new to the group. I went to the ER September 14th for > shortness > > > of breath and extreme fatigue. My CT showed scarring in my lungs > and I > > > had a blocked coronary artery. I had a stent put in my artery the > next > > > day. My pulmonologist performed a lung function test and determined > > > that I have interstitial lung disease (moderately severe). He then > > > performed a broncoscopy but did not get a diagnosis. He wants to do > an > > > open lung biopsy but the cardiologist does not want me to stop > taking > > > Plavix and it is dangerous to have the surgery. I am not waiting > until > > > June to see if I can stop the Plavix for the biopsy. I feel like I > am > > > in limbo waiting. I have good days and days with much shortness of > > > breath. I am not on oxygen yet. Will the wait make things much > worse > > > for my lungs? Thanks for your help... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 No, never had the walk test. Lots to think about. Re: new member DonnaI personally wouldn't wait until March to schedule at one but yourpulmonologist should be in favor. We're not talking about respect for apulmonologist but we're talking about what they deal with every day. AnILD center only deals with ILD's. A typical pulmonologist will have nomore than 1 or 2 patients with ILD's and some have none. I have a greatlocal pulmonologist who does have PF experience, but I still go to ILDcenters for more expertise. My local rheumatologist, I also respectgreatly, but he's the one pushing me hard to go to Duke for anotherreview.There is just too much disconnect when you're told "moderately severe"and you're not put on oxygen. Did you have a 6 minute walk test?> > > >> > > > I am new to the group. I went to the ER September 14th for> shortness> > > of breath and extreme fatigue. My CT showed scarring in my lungs> and I> > > had a blocked coronary artery. I had a stent put in my arterythe> next> > > day. My pulmonologist performed a lung function test anddetermined> > > that I have interstitial lung disease (moderately severe). Hethen> > > performed a broncoscopy but did not get a diagnosis. He wants todo> an> > > open lung biopsy but the cardiologist does not want me to stop> taking> > > Plavix and it is dangerous to have the surgery. I am not waiting> until> > > June to see if I can stop the Plavix for the biopsy. I feel likeI> am> > > in limbo waiting. I have good days and days with much shortnessof> > > breath. I am not on oxygen yet. Will the wait make things much> worse> > > for my lungs? Thanks for your help...> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Donna Let me explain what that tells me and why so significant. You can't determine oxygen needs without checking under exertion. I suspect you had an oximeter stuck on your finger but you were sitting. For COPD patients that is a normal procedure. They will normally need it seated if they need it for exertion and not show a tremendous difference. For PF patients, checking under activity is critical. It is very normal for us, especially at earlier stages, to not need oxygen when seated but to need it when active. I can sit much of the time without it. But under exertion, I can't go without. I require 3 lpm to 5 lpm depending on what I'm doing. So, while your pulmonologist may be great, just something as simple as this shows that his methods are not aimed toward Interstitial Lung Diseases. I'm very anxious to see what your oximeter tells you under exertion. Hopefully it will be ok and show you are above 90% at all times. If it shows that, then you are quite far from anything I'd call " moderately severe. " If it shows your saturations drop though, then getting oxygen quickly will become a priority. (Actually medicare and most insurers use 88% on a six minute walk as their cut off). > > > > > > > > > > I am new to the group. I went to the ER September 14th for > > shortness > > > > of breath and extreme fatigue. My CT showed scarring in my lungs > > and I > > > > had a blocked coronary artery. I had a stent put in my artery > the > > next > > > > day. My pulmonologist performed a lung function test and > determined > > > > that I have interstitial lung disease (moderately severe). He > then > > > > performed a broncoscopy but did not get a diagnosis. He wants to > do > > an > > > > open lung biopsy but the cardiologist does not want me to stop > > taking > > > > Plavix and it is dangerous to have the surgery. I am not waiting > > until > > > > June to see if I can stop the Plavix for the biopsy. I feel like > I > > am > > > > in limbo waiting. I have good days and days with much shortness > of > > > > breath. I am not on oxygen yet. Will the wait make things much > > worse > > > > for my lungs? Thanks for your help... > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Bruce, That is useful info. I ordered the oximeter this morning. I will let you know the outcome. Thanks so much! Re: new member DonnaLet me explain what that tells me and why so significant. You can'tdetermine oxygen needs without checking under exertion. I suspect youhad an oximeter stuck on your finger but you were sitting. For COPDpatients that is a normal procedure. They will normally need it seatedif they need it for exertion and not show a tremendous difference. ForPF patients, checking under activity is critical. It is very normal forus, especially at earlier stages, to not need oxygen when seated but toneed it when active. I can sit much of the time without it. But underexertion, I can't go without. I require 3 lpm to 5 lpm depending on whatI'm doing. So, while your pulmonologist may be great, just something assimple as this shows that his methods are not aimed toward InterstitialLung Diseases.I'm very anxious to see what your oximeter tells you under exertion.Hopefully it will be ok and show you are above 90% at all times. If itshows that, then you are quite far from anything I'd call "moderatelysevere." If it shows your saturations drop though, then getting oxygenquickly will become a priority. (Actually medicare and most insurers use88% on a six minute walk as their cut off).> > > > >> > > > > I am new to the group. I went to the ER September 14th for> > shortness> > > > of breath and extreme fatigue. My CT showed scarring in mylungs> > and I> > > > had a blocked coronary artery. I had a stent put in my artery> the> > next> > > > day. My pulmonologist performed a lung function test and> determined> > > > that I have interstitial lung disease (moderately severe). He> then> > > > performed a broncoscopy but did not get a diagnosis. He wantsto> do> > an> > > > open lung biopsy but the cardiologist does not want me to stop> > taking> > > > Plavix and it is dangerous to have the surgery. I am notwaiting> > until> > > > June to see if I can stop the Plavix for the biopsy. I feellike> I> > am> > > > in limbo waiting. I have good days and days with muchshortness> of> > > > breath. I am not on oxygen yet. Will the wait make things much> > worse> > > > for my lungs? Thanks for your help...> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Donna, Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join. You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis. Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA. The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA. BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you. Cees, S Calif IPF/UIP 10/08 > > > > > > I am new to the group. I went to the ER September 14th for shortness > > of breath and extreme fatigue. My CT showed scarring in my lungs and I > > had a blocked coronary artery. I had a stent put in my artery the next > > day. My pulmonologist performed a lung function test and determined > > that I have interstitial lung disease (moderately severe). He then > > performed a broncoscopy but did not get a diagnosis. He wants to do an > > open lung biopsy but the cardiologist does not want me to stop taking > > Plavix and it is dangerous to have the surgery. I am not waiting until > > June to see if I can stop the Plavix for the biopsy. I feel like I am > > in limbo waiting. I have good days and days with much shortness of > > breath. I am not on oxygen yet. Will the wait make things much worse > > for my lungs? Thanks for your help... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Cees, Thank you for this info. You all have made me feel welcome and not so alone. I feel my pulmonologist thinks I have a RA disease also. I had x-rays and the rheumatologist said I just have moderate arthritis. My thumbs hurt so bad sometimes. Would a lung biopsy prove it to be the cause of ILD? I so hope the meds help you. Please keep us informed.Thanks again... Donna Re: new member Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Donna, The biopsy would not show a cause of your fibrosis. What it would show is what type of fibrosing lung condision you have. Some are more typically associated with auto immune/connective tissue diseases than others. What diagnoses the RA is bloodwork and even then it can take multiple tries of the same blood test before it finally shows up. To use myself as an example, my lung biopsy in 2006 showed that I have fibrotic NSIP. NSIP is commonly associated with connective tissue disease and two years later in late 2008 I was finally diagnosed with dermatomyositis an inflammatory muscle condition that sometimes causes pulmonary fibrosis. I am now being treated specifically for the dermatomyositis with the intention of controling it and slowing the progress of my lung disease. It can take a long time to chase down these diagnosis' but it's worth the effort since treating the connective tissue disease often stablizes the lung disease. Hope that makes some sense. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, December 27, 2009 4:05:48 PMSubject: Re: Re: new member Cees, Thank you for this info. You all have made me feel welcome and not so alone. I feel my pulmonologist thinks I have a RA disease also. I had x-rays and the rheumatologist said I just have moderate arthritis. My thumbs hurt so bad sometimes. Would a lung biopsy prove it to be the cause of ILD? I so hope the meds help you. Please keep us informed.Thanks again... Donna Re: new member Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009  Beth, It makes sense. Hope my questions are not too silly. I do not know much about ILD and the docs do not always get easy answers. I appreciate your help. Donna Re: new member Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 Donna Your questions are quite normal and appropriate. The reality is that here on this forum there are more patients with PF than the average doctor sees in a lifetime. Now, the ILD centers see many but there are doctors who never see or diagnose PF. Chasing a connective tissue disease can be a challenge but the chase toward figuring things out the best possible is worth the effort. Even if the CT's and bronch are not conclusive, there must be some information that they do have and doctors should be forming opinions at least as to possibilities versus exclusions. Now, determining any connective tissue disease is also a matter of clinical diagnosis and not just tests. Putting your history, your current symptoms and the way your body is reacting, and the labs and tests together is a complex puzzle. It's also one that changes as new clues develop. There may be some other symptoms or issues that you'd never think to connect but that give additional clues. > > > > > > > > I am new to the group. I went to the ER September 14th for shortness > > > of breath and extreme fatigue. My CT showed scarring in my lungs and I > > > had a blocked coronary artery. I had a stent put in my artery the next > > > day. My pulmonologist performed a lung function test and determined > > > that I have interstitial lung disease (moderately severe). He then > > > performed a broncoscopy but did not get a diagnosis. He wants to do an > > > open lung biopsy but the cardiologist does not want me to stop taking > > > Plavix and it is dangerous to have the surgery. I am not waiting until > > > June to see if I can stop the Plavix for the biopsy. I feel like I am > > > in limbo waiting. I have good days and days with much shortness of > > > breath. I am not on oxygen yet. Will the wait make things much worse > > > for my lungs? Thanks for your help... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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