Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Good evening. I just recieved the letter from Jewish to my doctor and I cannot understand it at all. I don't know what the initials mean nor the numbers. It says for instance I have Pulmonary Hypertension and then there is a number with RAP after it. Have no idea. But my question is: Jewish wants me to get an open biopsy multilobe. What does that mean? Does that mean both lungs? And, I see the surgeon on Monday what questions should I ask him? Thank You, Joyce Rudy AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Joyce I'm glad you've been feeling so much better since Jewish. Just temper that and don't expect to suddenly be all well. Just hope for not getting worse or, if you must, making that a long long time away-maybe some progression in another 50 years or so. Then if you do improve or it takes some time, what a great bonus. Actually, there is so much said in what you posted from Jewish. First, the good part that they think it's the birds but want to make certain. A conservative approach to not risk overlooking something like scleroderma. But, ultimately all the choices are yours. Now, much of that first section sounds very much like radiologists write and the results of CT's normally read. I'm sure the radiologist wrote that portions looked like smoking related lung disease. Then, having gone into detail with you on your history, the doctor was able to interpret. He knew you hadn't smoked and knew of the birds. That would give the same appearance. So radiologist describes the appearance as he's use to seeing it, but pulmonologist translates based on knowledge of you. (Isn't teamwork just amazing). As to early fibrotic lung disease not being excluded. That's about as nice a statement as a radiologist will make. He's not going to say you don't have it. But he didn't see a reason to say you did have it. So, he says he can't say definitely you don't. The pleural effusion is accumulation of fluids. Notice he said " tiny. " Again, I have to put it kind of attitude but I'm not too concerned. More than 1 million people are diagnosed in the US each year with pleural effusion. In your case it's only material to your doctors if it reflects something serious. Borderline cardiomegaly or heart enlargement. Again, they want to determine why and prevent greater enlargement but key on the word " borderline. " The ANA and swallowing and concern about scleroderma. A million things can cause high ANA and another million can cause swallowing problems. Their intent is to take a conservative approach and eliminate scleroderma as while their is no cure for it, there is treatment to control it and prevent complications. Only you can decide if its worth the surgery to do that. I'd ask them how high do they think the probability of different things in terms of words like highly unlikely or doubtful or what word would they use. As to the pulmonary hypertension you didn't indicate what it said your pressure was. Again, often times the one reading the echocardiogram has a lower tolerance for listing it than the pulmonologist might for concern. Still, its worth knowing, for followup and questions. What you have is an excellent, very comprehensive report. Perhaps much more information than you cared to read, but all of importance and good to know. Now discuss it all with your doctors. Each point just as you asked us. Sometimes its troublesome seeing every possibility spelled out but isn't it good to know that they are aware of every one and monitoring or checking or tracking. A simple example. Your ANA may be lower next time and bounce around. However, now that they have a baseline reading, they would recognize if it continued to increase. Same with your pulmonary rate. Also, so much evidence in that brief document to show that they listened to you. Things you might not have related, from the birds to not smoking to the swallowing problems. Hopefully all this equips you better to talk to them on Monday and to continue to do so. If you need more talk with them, you insist on it. You drive the process. Even if they think you should be ready to move on, just say I need more clarification. I sure did that with my initial pulmonologist before my VATS. He thought he'd told me all I needed to know and answered all my questions until he found out I had a new long list. > > Beth, they told me that they want to confirm that it is the birds and check to make certain I don't have scleraderma.Apparetly I have several different looking things in my lungs and the letter said that multiple lobes would be necessary because he thought they would show different things. I also have mild emphasema in my upper lung. I don't know where I got that since I don't smoke. This is what the letter said and I don't understand it. " Patchy ground-glass abnormality with centrilobular nodularity and spetal thickening. This may represent smoking-related lung disease such s respiratory bronchiolitis. As the patient is nonsmoking consider hypersensitivity pneumonitis or drug toxicity. Early fibrotic lung disease is not excluded. Mild emphysema. Tiny left pleural effusion and borderline cardiomegaly. " I have no idea what this means. I can't find the latest letter where he said I show an ANA for Scleraderma and show a pattern of swallowing that is suggestive of Sclerderma but he doesn't think that it is that. I just have to tell you none of this makes much sense to me. He also said I have Pulmonary hypertension. All I know is what ever I have must not be too serious. Oh and he said he'd like to see me in 6 months and to give me another pulmonary function test in 4 months and after the biopsy he may suggest some kind of immune suppressant drugs but not Prednisone. Do you understand any of this. I have been so happy since I have been to Jewish. I think he thinks I am fine and will get well soon! For that reason I look forward to the biopsy because I think it will confirm the bird diagnoses and that I will be on my way to recovery. Joyce Rudy AZ > Questions > > > Good evening. I just recieved the letter from Jewish to my doctor and I cannot understand it at all. I don't know what the initials mean nor the numbers. It says for instance I have Pulmonary Hypertension and then there is a number with RAP after it. Have no idea. > > But my question is: Jewish wants me to get an open biopsy multilobe. What does that mean? Does that mean both lungs? And, I see the surgeon on Monday what questions should I ask him? Thank You, Joyce Rudy AZ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Joyce Oh, just love reading about you pushing your oxygen provider. You can tell him for me, that I'm going around as long as I possibly can. I know people on this forum on 8 liters who get out more than you'd think. I've met people for lunch on 10-15 liters. The reason people he knows on 4 lpm don't go around much is he doesn't do what he should to educate them and make it possible. He should take pride in seeing all people are capable of if he supports them right. > > > > Beth, they told me that they want to confirm that it is the birds > and check to make certain I don't have scleraderma.Apparetly I have > several different looking things in my lungs and the letter said that > multiple lobes would be necessary because he thought they would show > different things. I also have mild emphasema in my upper lung. I don't > know where I got that since I don't smoke. This is what the letter said > and I don't understand it. " Patchy ground-glass abnormality with > centrilobular nodularity and spetal thickening. This may represent > smoking-related lung disease such s respiratory bronchiolitis. As the > patient is nonsmoking consider hypersensitivity pneumonitis or drug > toxicity. Early fibrotic lung disease is not excluded. Mild emphysema. > Tiny left pleural effusion and borderline cardiomegaly. " I have no idea > what this means. I can't find the latest letter where he said I show an > ANA for Scleraderma and show a pattern of swallowing that is suggestive > of Sclerderma but he doesn't think that it is that. I just have to tell > you none of this makes much sense to me. He also said I have Pulmonary > hypertension. All I know is what ever I have must not be too serious. Oh > and he said he'd like to see me in 6 months and to give me another > pulmonary function test in 4 months and after the biopsy he may suggest > some kind of immune suppressant drugs but not Prednisone. Do you > understand any of this. I have been so happy since I have been to > Jewish. I think he thinks I am fine and will get well soon! For that > reason I look forward to the biopsy because I think it will confirm the > bird diagnoses and that I will be on my way to recovery. Joyce Rudy AZ > > Questions > > > > > > Good evening. I just recieved the letter from Jewish to my doctor > and I cannot understand it at all. I don't know what the initials mean > nor the numbers. It says for instance I have Pulmonary Hypertension and > then there is a number with RAP after it. Have no idea. > > > > But my question is: Jewish wants me to get an open biopsy > multilobe. What does that mean? Does that mean both lungs? And, I see > the surgeon on Monday what questions should I ask him? Thank You, Joyce > Rudy AZ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Joyce Oh, just love reading about you pushing your oxygen provider. You can tell him for me, that I'm going around as long as I possibly can. I know people on this forum on 8 liters who get out more than you'd think. I've met people for lunch on 10-15 liters. The reason people he knows on 4 lpm don't go around much is he doesn't do what he should to educate them and make it possible. He should take pride in seeing all people are capable of if he supports them right. > > > > Beth, they told me that they want to confirm that it is the birds > and check to make certain I don't have scleraderma.Apparetly I have > several different looking things in my lungs and the letter said that > multiple lobes would be necessary because he thought they would show > different things. I also have mild emphasema in my upper lung. I don't > know where I got that since I don't smoke. This is what the letter said > and I don't understand it. " Patchy ground-glass abnormality with > centrilobular nodularity and spetal thickening. This may represent > smoking-related lung disease such s respiratory bronchiolitis. As the > patient is nonsmoking consider hypersensitivity pneumonitis or drug > toxicity. Early fibrotic lung disease is not excluded. Mild emphysema. > Tiny left pleural effusion and borderline cardiomegaly. " I have no idea > what this means. I can't find the latest letter where he said I show an > ANA for Scleraderma and show a pattern of swallowing that is suggestive > of Sclerderma but he doesn't think that it is that. I just have to tell > you none of this makes much sense to me. He also said I have Pulmonary > hypertension. All I know is what ever I have must not be too serious. Oh > and he said he'd like to see me in 6 months and to give me another > pulmonary function test in 4 months and after the biopsy he may suggest > some kind of immune suppressant drugs but not Prednisone. Do you > understand any of this. I have been so happy since I have been to > Jewish. I think he thinks I am fine and will get well soon! For that > reason I look forward to the biopsy because I think it will confirm the > bird diagnoses and that I will be on my way to recovery. Joyce Rudy AZ > > Questions > > > > > > Good evening. I just recieved the letter from Jewish to my doctor > and I cannot understand it at all. I don't know what the initials mean > nor the numbers. It says for instance I have Pulmonary Hypertension and > then there is a number with RAP after it. Have no idea. > > > > But my question is: Jewish wants me to get an open biopsy > multilobe. What does that mean? Does that mean both lungs? And, I see > the surgeon on Monday what questions should I ask him? Thank You, Joyce > Rudy AZ > > > Quote Link to comment Share on other sites More sharing options...
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