Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 I am sorry to hear that Z but at least he said to do anything you can do and i hope that is to have lots of interesting times! Joyce R AZ birds , I'm going to try a look at the positive. While things may have worsened due to the bronchitis, your doctor did say anything you want to do and can do is good. You are a trooper and have lots of positive things in you life. Hope you have a happy Thanksgiving and when you feel up to it maybe you'll arrange a get together of the PA folks since you plan so well. Take care, rest and focus on the positive. Adrienne From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support Sent: Mon, November 23, 2009 2:05:47 PMSubject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. .yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 ... gosh I'm sorry to read you are not stable for now. These times are hard to go through. I especially noticed you mention hoping that your cognitive function don't go haywire.... can this be a symptom of our NSIP as well??? I'm really having a difficult time with my own cognitive functions. I wrote to someone a few days back that my cognitives aren't 'cogging' very well! Short term memory is a problem, I lose words when I'm talking, say the dumbest things right in the middle of a sentence and on and on. I also have more SOB and less energy, so I empathize with you. I'll stretch my hand half way and you stretch half way and we'll hold hands for support! hehee MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Z's pulmo appointment Well...here's the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 linda last spring, Kreider changed my diagnosis to idiopathic fibrosing alveolitis also this is because my disease is responsive to the meds, so for insurance purposes it can't be IPF if you look up the disease, it means the same thing you will do fine and become a happy camper again real soon Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Z's pulmo appointmentTo: Breathe-Support Date: Monday, November 23, 2009, 2:05 PM Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 besides no honeycombing is good news as far as i know Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Z's pulmo appointmentTo: Breathe-Support Date: Monday, November 23, 2009, 2:05 PM Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 , I'm sorry about your progression. I am, however, glad they noticed it in your testing. I'll be paraying for you. Don't beat yourself up over it. (I know-easier said than done.) Keep your chin up and smile. Sometimes just the simple act of smiling can make you feel better, even if it starts out as a fake smile. Better Breathin' to Ya! 34 FL IPF dx 1/06 > > *Well...here's the latest!* I had my appointment at Penn this morning. > My HRCT's from July and October show a re occurrence > of inflammation! " Idiopathic Fibrosing Alveolitis " it seems to be > yet another term for NSIP. > A glass like opacity in the lower lobe of both lungs..no honeycombing. > Even though symptoms have changed only in a minor way.( slight increase > in cough and SOB and less energy) > ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! > Here we go again...I'm just hoping that my cognitive function doesn't go > haywire! > He seem to think that this worsening may be a result of the bronchitis > from March! > I have to go back for the HRCT and PFT's in 3 months and keep n touch > with him if I > have trouble with the medication increases. > He hasn't changed his attitude my general health and feels that anything > I want and can do is good. > So, barring medication issues things should be OK. > BUT...it means for the time being I'm no longer stable...yuck..yuck..yuck! > Presently, I'm not a happy camper!It took so long to get down to the > 10mg of Prednisone! > > > Z 65, fibriotic NSIP/05/PA > > > And " mild " PH/10/07 > > No, NSIP was not self-inflicted...I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > " *I'm gonna be iron like a lion in Zion " Bob Marley* > > *Vinca Minor-periwinkle is my flower* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 , I'm going to try a look at the positive. While things may have worsened due to the bronchitis, your doctor did say anything you want to do and can do is good. You are a trooper and have lots of positive things in you life. Hope you have a happy Thanksgiving and when you feel up to it maybe you'll arrange a get together of the PA folks since you plan so well. Take care, rest and focus on the positive. Adrienne To: Breathe-Support Sent: Mon, November 23, 2009 2:05:47 PMSubject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, November 23, 2009 2:05:47 PMSubject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 : I am interested in the problems found in you lower lobes. Were you able to clear the crackles from your lungs each day---completely or a lessor amount. On most days I have crackles in my lower lobes. The right lobe is the worst of the two lobes. I can find little on this issue on the web and have gotten few comments from MDPs. I spend hours each day trying to clear my lungs. I no longer need to cough to bring white stuff up. I use a drink of water prior to most "bring-ups.'" I have IPF and there are many issues that might add to ones longivity or quality of life the Pulmonoligists ignor. I wish your book would cover some of these not important enough issues for Doctors. Today I walked like a drunk--worse day for balance problems ever. I asked my MDP about this. He told me this was our of his area. I needed to see another Doctor. I have talked with other persons with IPF. We think balance problems come with IPF. What do you think? Burns Subject: Re: Z's pulmo appointmentTo: Breathe-Support Date: Monday, November 23, 2009, 5:01 PM , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Mon, November 23, 2009 2:05:47 PMSubject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Pink Joyce, Yes, Dr. Delisser did say that due to my body's positive response to the meds he expected to see improvement.At least there was no honeycombing ( no additional fibrosis was found) just inflammation..JUST..that's not a JUST!I go back in 3 months for additional  HRCT and PFT"s to monitor the increases..hopefully I won't need to go to 40mg of Prednisone I was in never never land on that dose..foggy, jumpy, ADD ( Attention Deficit Disorder) and just miserable. Sher..the cognitive issues for me correlate with the increase of Prednisone. With the 10mg...I'm all right...higher than that...I have problems with the Wordjumbles and Wonderwords that we both like, and reading in general. I also forget what I am saying..losing ends of sentences. Adrienne..yes let's figure out a week-end soon to meet. Thanks for the kind words Beth ..Good for you.Stable is a good place. I'm working on getting back there. and Joyce Rudy ..Thanks for the pep talks! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA.. And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Joyce T Rosenberg wrote:  linda last spring, Kreider changed my diagnosis to idiopathic fibrosing alveolitis also  this is because my disease is responsive to the meds, so for insurance purposes it can't be IPF  if you look up the disease, it means the same thing  you will do fine and become a happy camper again real soon  Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org From: Zion <ljz741 (AT) verizon (DOT) net> Subject: Z's pulmo appointment To: Breathe-Support Date: Monday, November 23, 2009, 2:05 PM  Well...here' s the latest! I had my appointment at Penn this morning. My HRCT's from July and October show a re occurrence of inflammation!  " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP. A glass like opacity in the lower lobe of both lungs..no honeycombing. Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) ...the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! Here we go again...I'm just hoping that my cognitive function doesn't go haywire! He seem to think that this worsening may be a result of the bronchitis from March! I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I have trouble with the medication increases. He hasn't changed his attitude my general health and feels that anything I want and can do is good. So, barring medication issues things should be OK. BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck! Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Actually, I’d like some input on the balance problem as well. I’ve been having difficulty with balance for some time now but can’t determine if it’s related to this disease or my arthritis. Bob Dopher From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Burns Sent: Monday, November 23, 2009 7:14 PM To: Breathe-Support Subject: Re: Z's pulmo appointment : I am interested in the problems found in you lower lobes. Were you able to clear the crackles from your lungs each day---completely or a lessor amount. On most days I have crackles in my lower lobes. The right lobe is the worst of the two lobes. I can find little on this issue on the web and have gotten few comments from MDPs. I spend hours each day trying to clear my lungs. I no longer need to cough to bring white stuff up. I use a drink of water prior to most " bring-ups.' " I have IPF and there are many issues that might add to ones longivity or quality of life the Pulmonoligists ignor. I wish your book would cover some of these not important enough issues for Doctors. Today I walked like a drunk--worse day for balance problems ever. I asked my MDP about this. He told me this was our of his area. I needed to see another Doctor. I have talked with other persons with IPF. We think balance problems come with IPF. What do you think? Burns Subject: Re: Z's pulmo appointment To: Breathe-Support Date: Monday, November 23, 2009, 5:01 PM , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Zion <ljz741 (AT) verizon (DOT) net> To: Breathe-Support@ yahoogroups. com Sent: Mon, November 23, 2009 2:05:47 PM Subject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning. My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis " it seems to be yet another term for NSIP. A glass like opacity in the lower lobe of both lungs..no honeycombing. Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) ...the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! Here we go again...I'm just hoping that my cognitive function doesn't go haywire! He seem to think that this worsening may be a result of the bronchitis from March! I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I have trouble with the medication increases. He hasn't changed his attitude my general health and feels that anything I want and can do is good. So, barring medication issues things should be OK. BUT...it means for the time being I'm no longer stable...yuck. .yuck..yuck! Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Burns...Nope...no crackles...no additional fibrosis at all.That's what makes that noise that sounds like Velcro.I did hear them when I first was DX'd  I have been rather asymptomatic for 4+ years...that is except for coughing occasionally, being SOB and tired a lot!Ha! I really can't say I feel worse that before DX. Actually in comparison to the spring of 2005 just prior to DX I actually feel quite a bit better than that! So go figure! I have NSIP...one of the 200 forms that this monster includes.My form is responsive to the Prednisone and Imuran so I'm hoping that this short term increase will get me back to STABLE. I have no mucous to clear out..my cough ,if I have one, is dry. Only when I was really sick with bronchitis last winter did I have chest and lung congestion. The doc seems to think that this new inflammation may be related to that illness. About your balance...I go to a PT who specializes in Vertigo and Balance issues...She's been a miracle worker for me. My vertigo has gone for now and I practice my balance exercises daily. They really help. Ask your doctor ( probably your primary care) or look up PT's in the phonebook and ask about specializing in Vertigo and Balance. I live in the Philadelphia area and I now know about 2 such therapists near me. You might even call a nearby hospital PT department and ask them. Having balance issues can be a life-changing problem..falling is not a good thing! I don't know if balance comes with PF..I've had motion problems forever. I could not read while in anything moving,even had trouble reading bill boards. Forget about amusement rides...just the carousel for me.That's another story for another day. Many people may have balance issues and PF but that may also be related to age! I'm 65+ and as I have said I've always had balance and motion issues...so I can't blame PF for this problem. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/ And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Burns wrote:  : I am interested in the problems found in you lower lobes. Were you able to clear the crackles from your lungs each day---completely or a lessor amount. On most days I have crackles in my lower lobes. The right lobe is the worst of the two lobes.  I can find little on this issue on the web and have gotten few comments from MDPs.  I spend hours each day trying to clear my lungs. I no longer need to cough to bring white stuff up. I use a drink of water prior to most "bring-ups.'"  I have IPF and there are many issues that might add to ones longivity or quality of life the Pulmonoligists ignor. I wish your book would cover some of these not important enough issues for Doctors.  Today I walked like a drunk--worse day for balance problems ever. I asked my MDP about this. He told me this was our of his area. I needed to see another Doctor.   I have talked with other persons with IPF. We think balance problems come with IPF. What do you think? Burns   From: Beth <mbmurtha (AT) yahoo (DOT) com> Subject: Re: Z's pulmo appointment To: Breathe-Support Date: Monday, November 23, 2009, 5:01 PM  , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers.  Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Zion <ljz741 (AT) verizon (DOT) net> To: Breathe-Support@ yahoogroups. com Sent: Mon, November 23, 2009 2:05:47 PM Subject: Z's pulmo appointment  Well...here' s the latest! I had my appointment at Penn this morning. My HRCT's from July and October show a re occurrence of inflammation!  " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP. A glass like opacity in the lower lobe of both lungs..no honeycombing. Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) ...the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! Here we go again...I'm just hoping that my cognitive function doesn't go haywire! He seem to think that this worsening may be a result of the bronchitis from March! I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I have trouble with the medication increases. He hasn't changed his attitude my general health and feels that anything I want and can do is good. So, barring medication issues things should be OK. BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck! Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Bob I have the balance issue with no cause determined. > > > From: Beth mbmurtha@... > Subject: Re: Z's pulmo appointment > To: Breathe-Support > Date: Monday, November 23, 2009, 5:01 PM > > > > , > > I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! > > You are in my thoughts and prayers. > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > _____ > > > From: Zion ljz741 (AT) verizon (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, November 23, 2009 2:05:47 PM > Subject: Z's pulmo appointment > > > > Well...here' s the latest! I had my appointment at Penn this morning. > My HRCT's from July and October show a re occurrence > > of inflammation! " Idiopathic Fibrosing Alveolitis " it seems to be yet another term for NSIP. > A glass like opacity in the lower lobe of both lungs..no honeycombing. > Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) > ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! > Here we go again...I'm just hoping that my cognitive function doesn't go haywire! > He seem to think that this worsening may be a result of the bronchitis from March! > I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I > have trouble with the medication increases. > He hasn't changed his attitude my general health and feels that anything I want and can do is good. > So, barring medication issues things should be OK. > BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck! > Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! > > > Z 65, fibriotic NSIP/05/PA > > > And “mild†PH/10/07 > > > No, NSIP was not self-inflicted…I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > “I’m gonna be iron like a lion in Zion†Bob Marley > > Vinca Minor-periwinkle is my flower > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 --- In Breathe-Support , Zion wr , Sorry about your bad report ! Hope these days pass fast and you get back to 10mg prednisone soon, it is surely the Bronchitis that worsened the lung condn. Prayers and special hugs for you Geeta ote: > > *Well...here's the latest!* I had my appointment at Penn this morning. > My HRCT's from July and October show a re occurrence > of inflammation! " Idiopathic Fibrosing Alveolitis " it seems to be > yet another term for NSIP. > A glass like opacity in the lower lobe of both lungs..no honeycombing. > Even though symptoms have changed only in a minor way.( slight increase > in cough and SOB and less energy) > ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! > Here we go again...I'm just hoping that my cognitive function doesn't go > haywire! > He seem to think that this worsening may be a result of the bronchitis > from March! > I have to go back for the HRCT and PFT's in 3 months and keep n touch > with him if I > have trouble with the medication increases. > He hasn't changed his attitude my general health and feels that anything > I want and can do is good. > So, barring medication issues things should be OK. > BUT...it means for the time being I'm no longer stable...yuck..yuck..yuck! > Presently, I'm not a happy camper!It took so long to get down to the > 10mg of Prednisone! > > > Z 65, fibriotic NSIP/05/PA > > > And " mild " PH/10/07 > > No, NSIP was not self-inflicted...I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > " *I'm gonna be iron like a lion in Zion " Bob Marley* > > *Vinca Minor-periwinkle is my flower* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Same here Sher , my cognitive abilities have 'gone for a six' in crickiting languge. As i wathch the movies on the TV I agonise to recall the actors' names even as they on the tip of tongue, i dont get words I want though I know them. Let us live in this world too!! Keep well and good luck with your hospital visit!! Geeta > > Z fibriotic NSIP/05... gosh I'm sorry to read you are not stable for now. These times are hard to go through. > I especially noticed you mention hoping that your cognitive function don't go haywire.... can this be a symptom of our NSIP as well??? > I'm really having a difficult time with my own cognitive functions. I wrote to someone a few days back that my cognitives aren't 'cogging' very well! > Short term memory is a problem, I lose words when I'm talking, say the dumbest things right in the middle of a sentence and on and on. > > I also have more SOB and less energy, so I empathize with you. > I'll stretch my hand half way and you stretch half way and we'll hold hands for support! hehee > MamaSher; 71, IPF 3-2006, OR. > Don't fret about tomorrow, God is already there! > Z's pulmo appointment > > > > Well...here's the latest! I had my appointment at Penn this morning. > My HRCT's from July and October show a re occurrence > > > of inflammation! " Idiopathic Fibrosing Alveolitis " it seems to be yet another term for NSIP. > A glass like opacity in the lower lobe of both lungs..no honeycombing. > Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) > ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! > Here we go again...I'm just hoping that my cognitive function doesn't go haywire! > He seem to think that this worsening may be a result of the bronchitis from March! > I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I > have trouble with the medication increases. > He hasn't changed his attitude my general health and feels that anything I want and can do is good. > So, barring medication issues things should be OK. > BUT...it means for the time being I'm no longer stable...yuck..yuck..yuck! > Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! > > Z 65, fibriotic NSIP/05/PA > And " mild " PH/10/07 > > No, NSIP was not self-inflicted.I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > " I'm gonna be iron like a lion in Zion " Bob Marley > > Vinca Minor-periwinkle is my flower > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Bruce, I'll tell you the same thing that I posted to Burns...Find a Balance and Vertigo PT specialist!! I'll be damned if I'll let myself fall and get a broken anything!!!!! The exercises are really easy.. even a 65+ lady with NSIP and the remnants of vertigo can do them!!! So...Please do it!! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Bruce wrote: Bob I have the balance issue with no cause determined. > > > From: Beth mbmurtha@... > Subject: Re: Z's pulmo appointment > To: Breathe-Support > Date: Monday, November 23, 2009, 5:01 PM > > > > , > > I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! > > You are in my thoughts and prayers. > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > _____ > > > From: Zion ljz741 (AT) verizon (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, November 23, 2009 2:05:47 PM > Subject: Z's pulmo appointment > > > > Well...here' s the latest! I had my appointment at Penn this morning. > My HRCT's from July and October show a re occurrence > > of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP. > A glass like opacity in the lower lobe of both lungs..no honeycombing. > Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) > ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! > Here we go again...I'm just hoping that my cognitive function doesn't go haywire! > He seem to think that this worsening may be a result of the bronchitis from March! > I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I > have trouble with the medication increases. > He hasn't changed his attitude my general health and feels that anything I want and can do is good. > So, barring medication issues things should be OK. > BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck! > Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! > > > Z 65, fibriotic NSIP/05/PA > > > And “mild†PH/10/07 > > > No, NSIP was not self-inflicted…I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > “I’m gonna be iron like a lion in Zion†Bob Marley > > Vinca Minor-periwinkle is my flower > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 i have been forgetting nouns for quite a while now. I can describe the noun, but don't remember the word i am looking for. at the ballpark, this hostess was nice to me. i was trying to tell Jerry who she was. could not remember her name, told him that she used to go out with Joe xxx, and she has a friend from England, but couldn't remember her name Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Z's pulmo appointmentTo: Breathe-Support Date: Tuesday, November 24, 2009, 12:18 AM Same here Sher , my cognitive abilities have 'gone for a six' in crickiting languge. As i wathch the movies on the TV I agonise to recall the actors' names even as they on the tip of tongue, i dont get words I want though I know them.Let us live in this world too!!Keep well and good luck with your hospital visit!!Geeta>> Z fibriotic NSIP/05. .. gosh I'm sorry to read you are not stable for now. These times are hard to go through.> I especially noticed you mention hoping that your cognitive function don't go haywire.... can this be a symptom of our NSIP as well???> I'm really having a difficult time with my own cognitive functions. I wrote to someone a few days back that my cognitives aren't 'cogging' very well!> Short term memory is a problem, I lose words when I'm talking, say the dumbest things right in the middle of a sentence and on and on.> > I also have more SOB and less energy, so I empathize with you.> I'll stretch my hand half way and you stretch half way and we'll hold hands for support! hehee> MamaSher; 71, IPF 3-2006, OR.> Don't fret about tomorrow, God is already there!> Z's pulmo appointment> > > > Well...here' s the latest! I had my appointment at Penn this morning.> My HRCT's from July and October show a re occurrence> > > of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.> A glass like opacity in the lower lobe of both lungs..no honeycombing.> Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)> ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!> Here we go again...I'm just hoping that my cognitive function doesn't go haywire!> He seem to think that this worsening may be a result of the bronchitis from March!> I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I> have trouble with the medication increases.> He hasn't changed his attitude my general health and feels that anything I want and can do is good.> So, barring medication issues things should be OK.> BUT...it means for the time being I'm no longer stable...yuck. .yuck..yuck!> Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone!> > Z 65, fibriotic NSIP/05/PA > And "mild" PH/10/07 > > No, NSIP was not self-inflicted. I never smoked!> > Potter, reader,carousel lover and MomMom to Darah and Sara > > "I'm gonna be iron like a lion in Zion" Bob Marley> > Vinca Minor-periwinkle is my flower> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 then there was the time i was trying to describe this problem to a friend of mine "my brain is like a ........." i described the noun as being the thing you drain spaghetti in she said colander like a colander, but that's not the right word much much much later i remembered "my brain is like a sieve" Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Z's pulmo appointmentTo: Breathe-Support Date: Tuesday, November 24, 2009, 12:18 AM Same here Sher , my cognitive abilities have 'gone for a six' in crickiting languge. As i wathch the movies on the TV I agonise to recall the actors' names even as they on the tip of tongue, i dont get words I want though I know them.Let us live in this world too!!Keep well and good luck with your hospital visit!!Geeta>> Z fibriotic NSIP/05. .. gosh I'm sorry to read you are not stable for now. These times are hard to go through.> I especially noticed you mention hoping that your cognitive function don't go haywire.... can this be a symptom of our NSIP as well???> I'm really having a difficult time with my own cognitive functions. I wrote to someone a few days back that my cognitives aren't 'cogging' very well!> Short term memory is a problem, I lose words when I'm talking, say the dumbest things right in the middle of a sentence and on and on.> > I also have more SOB and less energy, so I empathize with you.> I'll stretch my hand half way and you stretch half way and we'll hold hands for support! hehee> MamaSher; 71, IPF 3-2006, OR.> Don't fret about tomorrow, God is already there!> Z's pulmo appointment> > > > Well...here' s the latest! I had my appointment at Penn this morning.> My HRCT's from July and October show a re occurrence> > > of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.> A glass like opacity in the lower lobe of both lungs..no honeycombing.> Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)> ..the Prednisone was > increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!> Here we go again...I'm just hoping that my cognitive function doesn't go haywire!> He seem to think that this worsening may be a result of the bronchitis from March!> I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I> have trouble with the medication increases.> He hasn't changed his attitude my general health and feels that anything I want and can do is good.> So, barring medication issues things should be OK.> BUT...it means for the time being I'm no longer stable...yuck. .yuck..yuck!> Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone!> > Z 65, fibriotic NSIP/05/PA > And "mild" PH/10/07 > > No, NSIP was not self-inflicted. I never smoked!> > Potter, reader,carousel lover and MomMom to Darah and Sara > > "I'm gonna be iron like a lion in Zion" Bob Marley> > Vinca Minor-periwinkle is my flower> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 I've never had good balance and I don't fall often. I actually am very good at falling when or if I do by stumbling or tripping or whatever. Mine is by no degree what you've experienced. I just won't be doing any skating or bike riding. > > > > > > > > > From: Beth mbmurtha@ > > > Subject: Re: Z's pulmo appointment > > > To: Breathe-Support > > <mailto:Breathe-Support%40yahoogroups.com> > > > Date: Monday, November 23, 2009, 5:01 PM > > > > > > > > > > > > , > > > > > > I'm sorry you are going through this right now. IT STINK'S!!! > > Hopefully the increase in the meds will stop the progression and get you > > back in the stables where you belong! > > > > > > You are in my thoughts and prayers. > > > > > > > > > Beth > > > > > > Moderator > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > > > > > > From: Zion ljz741 (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Mon, November 23, 2009 2:05:47 PM > > > Subject: Z's pulmo appointment > > > > > > > > > > > > Well...here' s the latest! I had my appointment at Penn this morning. > > > My HRCT's from July and October show a re occurrence > > > > > > of inflammation! " Idiopathic Fibrosing Alveolitis " it seems to be > > yet another term for NSIP. > > > A glass like opacity in the lower lobe of both lungs..no > > honeycombing. > > > Even though symptoms have changed only in a minor way.( slight > > increase in cough and SOB and less energy) > > > ..the Prednisone was > > > increased from 10 to 20mg and the Imuran was increased from 50 to > > 75mg! > > > Here we go again...I'm just hoping that my cognitive function doesn't > > go haywire! > > > He seem to think that this worsening may be a result of the bronchitis > > from March! > > > I have to go back for the HRCT and PFT's in 3 months and keep n touch > > with him if I > > > have trouble with the medication increases. > > > He hasn't changed his attitude my general health and feels that > > anything I want and can do is good. > > > So, barring medication issues things should be OK. > > > BUT...it means for the time being I'm no longer stable...yuck. > > .yuck..yuck! > > > Presently, I'm not a happy camper!It took so long to get down to the > > 10mg of Prednisone! > > > > > > > > > Z 65, fibriotic NSIP/05/PA > > > > > > > > > And âEURoemildâEUR? PH/10/07 > > > > > > > > > No, NSIP was not self-inflictedâEUR¦I never smoked! > > > > > > Potter, reader,carousel lover and MomMom to Darah and Sara > > > > > > âEURoeIâEUR^m gonna be iron like a lion in ZionâEUR? Bob > > Marley > > > > > > Vinca Minor-periwinkle is my flower > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 I probably have family IPF. My brother died from IPF. He also had balance problems. Thanks, I will inquire at our local hospital to find an expert. We have a very good hospital in Holland, Mi. which offers pulmonary rehab year arround. Burns From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Z's pulmo appointmentTo: Breathe-Support@ yahoogroups. comDate: Monday, November 23, 2009, 5:01 PM , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Mon, November 23, 2009 2:05:47 PMSubject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Burns, The PT I see has no connection to the Pulmonary Rehab. Her practice deals primarily with Balance and Vertigo although I did see some clients with other issues as well. Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Burns wrote:  I probably have family IPF. My brother died from IPF. He also had balance problems. Thanks, I will inquire at our local hospital to find an expert. We have a very good hospital in Holland, Mi. which offers pulmonary rehab year arround. Burns From: Beth <mbmurtha (AT) yahoo (DOT) com> Subject: Re: Z's pulmo appointment To: Breathe-Support@ yahoogroups. com Date: Monday, November 23, 2009, 5:01 PM  , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers.  Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Zion <ljz741 (AT) verizon (DOT) net> To: Breathe-Support@ yahoogroups. com Sent: Mon, November 23, 2009 2:05:47 PM Subject: Z's pulmo appointment  Well...here' s the latest! I had my appointment at Penn this morning. My HRCT's from July and October show a re occurrence of inflammation!  " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP. A glass like opacity in the lower lobe of both lungs..no honeycombing. Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy) ...the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg! Here we go again...I'm just hoping that my cognitive function doesn't go haywire! He seem to think that this worsening may be a result of the bronchitis from March! I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if I have trouble with the medication increases. He hasn't changed his attitude my general health and feels that anything I want and can do is good. So, barring medication issues things should be OK. BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck! Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2009 Report Share Posted November 28, 2009 Thanks, I have now found a vertigo program offered by a nearby hospital. I do not check my email often. I spend six or more each day exercising and clearing my lungs. I want to be an IPF victom with some longevity. I am also sleeping more. Burns From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Z's pulmo appointmentTo: Breathe-Support@ yahoogroups. comDate: Monday, November 23, 2009, 5:01 PM , I'm sorry you are going through this right now. IT STINK'S!!! Hopefully the increase in the meds will stop the progression and get you back in the stables where you belong! You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Mon, November 23, 2009 2:05:47 PMSubject: Z's pulmo appointment Well...here' s the latest! I had my appointment at Penn this morning.My HRCT's from July and October show a re occurrence of inflammation! " Idiopathic Fibrosing Alveolitis" it seems to be yet another term for NSIP.A glass like opacity in the lower lobe of both lungs..no honeycombing.Even though symptoms have changed only in a minor way.( slight increase in cough and SOB and less energy)..the Prednisone was increased from 10 to 20mg and the Imuran was increased from 50 to 75mg!Here we go again...I'm just hoping that my cognitive function doesn't go haywire!He seem to think that this worsening may be a result of the bronchitis from March!I have to go back for the HRCT and PFT's in 3 months and keep n touch with him if Ihave trouble with the medication increases.He hasn't changed his attitude my general health and feels that anything I want and can do is good.So, barring medication issues things should be OK.BUT...it means for the time being I'm no longer stable...yuck. ..yuck..yuck!Presently, I'm not a happy camper!It took so long to get down to the 10mg of Prednisone! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
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