Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Joyce Multi-lobe means a sample from multi-lobes of the same lung. Typically today they take three samples. They take these from each lobe. This allows them to get a full picture of your condition. At one time, they just took a single sample. Unfortunately, that often left inconclusive results as your fibrosis may just be centered in one lobe at this time. Also, you can possibly have different indications from different lobes and even multiple conditions. So, multi-lobe has significantly increased the likelihood of getting solid answers from the biopsy. RAP is Right Arterial Pressure. This is the measure used to determine the level of pulmonary hypertension. Pulmonary hypertension is common in pulmonary fibrosis patients as a result of inadequate oxygen. This is the number one reason to use your supplemental oxygen faithfully. There are medications for pulmonary hypertension if it is deemed sufficient to require them. I have some indication of PH but my RAP as measured from my echocardiogram is not yet high enough to indicate a problem. Now, if the echocardiogram indicates a source of concern, the next step is generally a heart catheter. This sounds like a horrible procedure but isn't at all. Many here have had them and they generally are not bad at all. The heart catheter is the only way to get an accurate read of your RAP. You should ask the surgeon anything you want. Ask what to expect from the VATS. I even ask how many of that procedure my surgeon has performed and what complications he has encountered (I'm quite direct on those type things). Ask about the hospital facilities where you'll have it. Ask what to expect the day of the surgery, the day after, the next day. Ask what is important for you to do after to avoid complications (One definite is to use your incentive spirometer faithfully). The good thing to is that you got copies of your notes from National Jewish so you can ask questions of us like you did about the PH and so you can make sure your doctor and Jewish cover everything with you. You did exactly right. There was something there you didn't understand and you wanted to know what it means. > > 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 sorry to hear you have pulmonary hypertension. Unfortunately it is a common complication of many types of lung disease. The number you see in the report is a measure of the Right Arterial Pressure (that's the RAP you referred to). This measures the pressure in the pulmonary artery. As for the lung biopsy, multi lobe means they will take small sections of more then one lobe of your lung on one side. It does not mean they will be taking samples from both lungs. The biopsy will be done on one side or the other, not both. I would have many questions for the surgeon, starting with, what information will you gain from a biopsy that you can't gain from some other less invasive procedure? An open lung biopsy is major surgery Joyce. I'm not saying you shouldn't have it done. I had one done and if I had it to do over again, I would but it was no walk in the park. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, April 23, 2009 11:26:36 PMSubject: 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 24, 2009 Report Share Posted April 24, 2009 Joyce, I'm sorry to hear you have pulmonary hypertension. Unfortunately it is a common complication of many types of lung disease. The number you see in the report is a measure of the Right Arterial Pressure (that's the RAP you referred to). This measures the pressure in the pulmonary artery. As for the lung biopsy, multi lobe means they will take small sections of more then one lobe of your lung on one side. It does not mean they will be taking samples from both lungs. The biopsy will be done on one side or the other, not both. I would have many questions for the surgeon, starting with, what information will you gain from a biopsy that you can't gain from some other less invasive procedure? An open lung biopsy is major surgery Joyce. I'm not saying you shouldn't have it done. I had one done and if I had it to do over again, I would but it was no walk in the park. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, April 23, 2009 11:26:36 PMSubject: 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 24, 2009 Report Share Posted April 24, 2009 Joyce The other major question I would have is exactly what procedure is he performing-is it a tradtional Open Lung Biopsy or a Video Assisted Thoracoscopic Surgery form of biopsy? If it is Open then I'd ask why that choice instead of a VATS. > > Joyce, > I'm sorry to hear you have pulmonary hypertension. Unfortunately it is a common complication of many types of lung disease. The number you see in the report is a measure of the Right Arterial Pressure (that's the RAP you referred to). This measures the pressure in the pulmonary artery. > As for the lung biopsy, multi lobe means they will take small sections of more then one lobe of your lung on one side. It does not mean they will be taking samples from both lungs. The biopsy will be done on one side or the other, not both. I would have many questions for the surgeon, starting with, what information will you gain from a biopsy that you can't gain from some other less invasive procedure? An open lung biopsy is major surgery Joyce. I'm not saying you shouldn't have it done. I had one done and if I had it to do over again, I would but it was no walk in the park. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: greycharlie greycharlie@... > To: Breathe-Support > Sent: Thursday, April 23, 2009 11:26:36 PM > Subject: 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 24, 2009 Report Share Posted April 24, 2009 Joyce The other major question I would have is exactly what procedure is he performing-is it a tradtional Open Lung Biopsy or a Video Assisted Thoracoscopic Surgery form of biopsy? If it is Open then I'd ask why that choice instead of a VATS. > > Joyce, > I'm sorry to hear you have pulmonary hypertension. Unfortunately it is a common complication of many types of lung disease. The number you see in the report is a measure of the Right Arterial Pressure (that's the RAP you referred to). This measures the pressure in the pulmonary artery. > As for the lung biopsy, multi lobe means they will take small sections of more then one lobe of your lung on one side. It does not mean they will be taking samples from both lungs. The biopsy will be done on one side or the other, not both. I would have many questions for the surgeon, starting with, what information will you gain from a biopsy that you can't gain from some other less invasive procedure? An open lung biopsy is major surgery Joyce. I'm not saying you shouldn't have it done. I had one done and if I had it to do over again, I would but it was no walk in the park. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: greycharlie greycharlie@... > To: Breathe-Support > Sent: Thursday, April 23, 2009 11:26:36 PM > Subject: 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 24, 2009 Report Share Posted April 24, 2009 Joyce, There are two lung biopsy surgeries. One is the VATS (video assisted thoracic surgery). In this they use the same kind of scope that they use in laproscopic surgery, they make a small incision, insert the scope to visualize the area and then make one or two additional small incisions, insert intruments to actually take samples of lung tissue. The other option is the open lung biopsy. The surgeons make two or three somewhat larger incisions to be able to get a clear view of the areas of lung they wish to take samples of. Post operatively from an open lung biopsy (which is the one they've told you they want to do.) you will probably have a chest tube to facilitate drainage from the surgical incisions and there will be significant pain. It's really impossible to say how you will react to the surgery. Everyone is different. We have members who were in the hospital 2 or 3 days and had no difficulties with recovery from both the VATS and the open lung biopsy. We've also had members who had a much more difficult time (I was one of them). Sometimes they start out with the intent to do a VATS and end up abandoning that course and doing the faster, if more invasive open lung biopsy. That's what happened to me. I reacted poorly to the anesthesia and ended up on a ventilator for 3 days post op. I was in the hospital for a week afterward that. I didn't drive for two weeks after I got home from the hospital. Joyce my advice would be to ask alot of questions about the biopsy. Ask them what they hope to learn from it. Can they get that information from other, less invasive tests? If they have a diagnosis and know what caused it (the birds) then what is the purpose of the biopsy? I'm not saying you shouldn't do it, I'm only saying you should understand why they want you to do it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, April 24, 2009 10:33:06 AMSubject: Re: Questions Beth, thank you for explainig the RAP and the lung biopsy. You say it is no walk in the park. What can I expect afterward assuming all goes well? I live alone and have 5 dogs. Will I be able to care for them and myself? Will there be post surgical pain? Do you think I will be able to drive? I understand it is a minimal 2 day stay in the hospital. I did find a friend who would be able to take me to Phoenix and bring me home from the hospital and that is a blessing. I didn't think I would be able to drive 200 miles just being released from the hospital. 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 24, 2009 Report Share Posted April 24, 2009 Joyce, There are two lung biopsy surgeries. One is the VATS (video assisted thoracic surgery). In this they use the same kind of scope that they use in laproscopic surgery, they make a small incision, insert the scope to visualize the area and then make one or two additional small incisions, insert intruments to actually take samples of lung tissue. The other option is the open lung biopsy. The surgeons make two or three somewhat larger incisions to be able to get a clear view of the areas of lung they wish to take samples of. Post operatively from an open lung biopsy (which is the one they've told you they want to do.) you will probably have a chest tube to facilitate drainage from the surgical incisions and there will be significant pain. It's really impossible to say how you will react to the surgery. Everyone is different. We have members who were in the hospital 2 or 3 days and had no difficulties with recovery from both the VATS and the open lung biopsy. We've also had members who had a much more difficult time (I was one of them). Sometimes they start out with the intent to do a VATS and end up abandoning that course and doing the faster, if more invasive open lung biopsy. That's what happened to me. I reacted poorly to the anesthesia and ended up on a ventilator for 3 days post op. I was in the hospital for a week afterward that. I didn't drive for two weeks after I got home from the hospital. Joyce my advice would be to ask alot of questions about the biopsy. Ask them what they hope to learn from it. Can they get that information from other, less invasive tests? If they have a diagnosis and know what caused it (the birds) then what is the purpose of the biopsy? I'm not saying you shouldn't do it, I'm only saying you should understand why they want you to do it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, April 24, 2009 10:33:06 AMSubject: Re: Questions Beth, thank you for explainig the RAP and the lung biopsy. You say it is no walk in the park. What can I expect afterward assuming all goes well? I live alone and have 5 dogs. Will I be able to care for them and myself? Will there be post surgical pain? Do you think I will be able to drive? I understand it is a minimal 2 day stay in the hospital. I did find a friend who would be able to take me to Phoenix and bring me home from the hospital and that is a blessing. I didn't think I would be able to drive 200 miles just being released from the hospital. 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 24, 2009 Report Share Posted April 24, 2009 Joyce, There are two lung biopsy surgeries. One is the VATS (video assisted thoracic surgery). In this they use the same kind of scope that they use in laproscopic surgery, they make a small incision, insert the scope to visualize the area and then make one or two additional small incisions, insert intruments to actually take samples of lung tissue. The other option is the open lung biopsy. The surgeons make two or three somewhat larger incisions to be able to get a clear view of the areas of lung they wish to take samples of. Post operatively from an open lung biopsy (which is the one they've told you they want to do.) you will probably have a chest tube to facilitate drainage from the surgical incisions and there will be significant pain. It's really impossible to say how you will react to the surgery. Everyone is different. We have members who were in the hospital 2 or 3 days and had no difficulties with recovery from both the VATS and the open lung biopsy. We've also had members who had a much more difficult time (I was one of them). Sometimes they start out with the intent to do a VATS and end up abandoning that course and doing the faster, if more invasive open lung biopsy. That's what happened to me. I reacted poorly to the anesthesia and ended up on a ventilator for 3 days post op. I was in the hospital for a week afterward that. I didn't drive for two weeks after I got home from the hospital. Joyce my advice would be to ask alot of questions about the biopsy. Ask them what they hope to learn from it. Can they get that information from other, less invasive tests? If they have a diagnosis and know what caused it (the birds) then what is the purpose of the biopsy? I'm not saying you shouldn't do it, I'm only saying you should understand why they want you to do it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, April 24, 2009 10:33:06 AMSubject: Re: Questions Beth, thank you for explainig the RAP and the lung biopsy. You say it is no walk in the park. What can I expect afterward assuming all goes well? I live alone and have 5 dogs. Will I be able to care for them and myself? Will there be post surgical pain? Do you think I will be able to drive? I understand it is a minimal 2 day stay in the hospital. I did find a friend who would be able to take me to Phoenix and bring me home from the hospital and that is a blessing. I didn't think I would be able to drive 200 miles just being released from the hospital. 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 24, 2009 Report Share Posted April 24, 2009 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 24, 2009 Report Share Posted April 24, 2009 Bruce, Yes, I was so glad to see that they were taking the conservative approach and that they were listening to me and did a thorough exam. Yes! I read it and didn't think it was so bad. I would like to rule out once and for all that I don't have scleraderma. But, as he said it is highly unlikely. I left Jewish feeling elated that they found out the problem and it was correctable. So many people with an ILD don't have the option of removing something from their environment and stoppin gthe progression of their illness. That made me feel wonderfu...though the loss of my birds was upsetting. I didn' t see the report as a "bad' report but an excellent one considering what I was told before I went to see them. I will indeed write a list of questions to ask the surgeon. There are things I want to know. I can't find the letter that said the number of my PH...I think it was 58. It was done from an Echo. No one seems to be too concerned. Although I sure would like to know why it has gone up. Oh, I pushed and pushed and got my oxygen provider to give me enough oxygen to get to Phoenix and come home although he was very pessimistic about it. He said people on 4 litres don't go running around. I told him I didn't think 4 litres was such a huge amount. Joyce Rudy AZ Questions>>> Good evening. I just recieved the letter from Jewish to my doctorand I cannot understand it at all. I don't know what the initials meannor the numbers. It says for instance I have Pulmonary Hypertension andthen there is a number with RAP after it. Have no idea.>> But my question is: Jewish wants me to get an open biopsymultilobe. What does that mean? Does that mean both lungs? And, I seethe surgeon on Monday what questions should I ask him? Thank You, JoyceRudy 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 I love how you say in the end " they should have " and " I should have " as we all learn along the way. I get my deliveries on Thursday afternoon, generally 2 o'clock or later. I just arrange everything possible around that and when there is a conflict coming up I make arrangements with them in advance. On the other hand, if you do miss, it's still their responsibility to work to insure no lapse in oxygen. Still oxygen doesn't have to limit you. It just takes time, trial and, sometimes error to figure out how to not let it. For trips out of town it may take a reservoir in your vehicle and one at the other end or E-tanks in addition to the liquid or any combination. With a 5:1 conserver, an E-tank can last approximately 14 hours at 4 lpm. Without a conserver, it can last approximately 2.8 hours. > > > > > > 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 I love how you say in the end " they should have " and " I should have " as we all learn along the way. I get my deliveries on Thursday afternoon, generally 2 o'clock or later. I just arrange everything possible around that and when there is a conflict coming up I make arrangements with them in advance. On the other hand, if you do miss, it's still their responsibility to work to insure no lapse in oxygen. Still oxygen doesn't have to limit you. It just takes time, trial and, sometimes error to figure out how to not let it. For trips out of town it may take a reservoir in your vehicle and one at the other end or E-tanks in addition to the liquid or any combination. With a 5:1 conserver, an E-tank can last approximately 14 hours at 4 lpm. Without a conserver, it can last approximately 2.8 hours. > > > > > > 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 I love how you say in the end " they should have " and " I should have " as we all learn along the way. I get my deliveries on Thursday afternoon, generally 2 o'clock or later. I just arrange everything possible around that and when there is a conflict coming up I make arrangements with them in advance. On the other hand, if you do miss, it's still their responsibility to work to insure no lapse in oxygen. Still oxygen doesn't have to limit you. It just takes time, trial and, sometimes error to figure out how to not let it. For trips out of town it may take a reservoir in your vehicle and one at the other end or E-tanks in addition to the liquid or any combination. With a 5:1 conserver, an E-tank can last approximately 14 hours at 4 lpm. Without a conserver, it can last approximately 2.8 hours. > > > > > > 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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