Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 BJ... I'm thinking if mold was not found when you bought the place ("they lied") did you then have a house inspection? If not, I hope you don't have to pay the price now. An inspector will no doubt find mold if a new buyer gets a house inspection. I do so wish you could get out of your house and get where you want to be. Hugs. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Tuesday, January 19, 2010 8:02 PM To: Breathe-Support Subject: Re: Frustrated Sher, I still haven't heard anything. I got my weekly update today but it kept saying the page can't be found. All of the mold and bird stuff should be gone or at least sealed in. But I've had housekeepers and I'm sure there are still places they haven't cleaned. I:m a clutterbug so it's hard and they don't do deep cleaning. I've been wearing a mask and trying to get some of it around my computer desk and file cabinets but I seem to be having some side affects from the CellCept. I oonly have one blood pressure pill so I have to get to town tomorrow and get some. I hope I feel better. There never was any mold showing on my walls. It was all in my rotten ceiling and roof. They lied to me when I bought the house about several things. One was the r0oof and my inspector didn't catch it.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Sher, I did have it inspected. The mold was in the rotten roof and the roof is gone and has been replaced. I paid for it with some help from the USDA. I know they lied because they told me the very slight droop in the ceiling was caused from a leak in the skylights. The skylights were fixed and the problem solved. Sure! When I noticed the beam over my head starting to sink I got a USDA loan to get it fixed. When the carpenter's were working on the roof they took pictures all of the way. When they removed the ceiling you could see where they had removed the skylights and connected new wood to the rotten roof. That's how they fixed it. I could have sued but I was living on $800 a month. I tried to get Legal Aid and they said it wasn't over $5,000 so I would have to go to small claims court and be my own lawyer, make out my own papers and drive 40 miles each way to the county court house. I decided I couldn't do it. Apparently Legal Aid isn't what people think it is. I am so sick tonight. I know it is side affects from the CellCept Dr. Raghu put me on. I also let him talk me into taking 5mg of Prednisone again and my blood sugar was low this morning and high this afternoon so it's looking like my Diabetes might be back . I started out with 90 e-mail to go through so I had better get to reading.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 beverley it takes awhile to adjust to Cellcept the initial side effects for me had to do with my tummy i stopped eating all dairy for a while as suggested by the doc things improved i eat some dairy products now and drink lactaid milk, or take lactaid pills, but i stay away from yogurt i'm on 10 mgs prednisone and metformin for the diabetes Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: FrustratedTo: Breathe-Support Date: Wednesday, January 20, 2010, 10:38 PM Sher, I did have it inspected. The mold was in the rotten roof and the roof is gone and has been replaced. I paid for it with some help from the USDA. I know they lied because they told me the very slight droop in the ceiling was caused from a leak in the skylights. The skylights were fixed and the problem solved. Sure! When I noticed the beam over my head starting to sink I got a USDA loan to get it fixed. When the carpenter's were working on the roof they took pictures all of the way. When they removed the ceiling you could see where they had removed the skylights and connected new wood to the rotten roof. That's how they fixed it. I could have sued but I was living on $800 a month. I tried to get Legal Aid and they said it wasn't over $5,000 so I would have to go to small claims court and be my own lawyer, make out my own papers and drive 40 miles each way to the county court house. I decided I couldn't do it. Apparently Legal Aid isn't what people think it is. I am so sick tonight. I know it is side affects from the CellCept Dr. Raghu put me on. I also let him talk me into taking 5mg of Prednisone again and my blood sugar was low this morning and high this afternoon so it's looking like my Diabetes might be back . I started out with 90 e-mail to go through so I had better get to reading.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 You can't do much with no money and no legal help. I'm seeing my PC in the morning. I think if it is necessary I will see if she will contact Dr. Raghu. Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2634 - Release Date: 01/20/10 01:12:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 BJ... I'm relieved you called your PCP. I'll watch for what she tells you... MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Thursday, January 21, 2010 7:57 PM To: Breathe-Support Subject: Re: Frustrated You can't do much with no money and no legal help. I'm seeing my PC in the morning. I think if it is necessary I will see if she will contact Dr. Raghu. Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2634 - Release Date: 01/20/10 01:12:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2638 - Release Date: 01/21/10 23:34:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 All, Fifteen months ago I was diagnosed with mild PF and mild HP and ten months ago sleep apnea. After going on CPAP I felt better going from weal to fatigued alot. Last week I went to my Pulmonoligist who told me my PFT was again stable which is good news, except he says I should feel better than I do. I told him the dermatologist says I have an autoimmune disease affecting my hand ( I think it looks like mechanic's hand, but it has not been called that. Pulmonoligist says I may have an autoimmune disease. I know you all advise everyone to go to a center of excellence but that will not work for me. I go to a pulmonologist to a city not far from here. He was recommended by my cardiologist (who is a researcher ) due to Pulmonolgist having success in treating PF. I am frustrated because of not having of final diagnosis which I realise may be slow or perhaps never and because I find it so difficult to get daily life taken care of - job, house, errands. I have paced myself for years which means I leave out the fun and social. Pulmonlogist keeps going back to the first PFT before I saw him which was severe. Is it possible to have a bad day and they test and it is severe? And why don't I feel better? Any advice? Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Gale You can't get to any teaching hospital with an Interstitial Lung Disease department? I'm not comfortable with some of what is in your post. You were referred to a doctor who had success in treating PF? I guess it's how you define success. The fact you haven't been through the blood work and even perhaps muscle biopsy for Dermatomyositis or other Connective Tissue Diseases is disturbing, especially since your Dermatologist feels you may have it. It's critical to find out because they could treat the Connective Tissue Disease and it might stabilize the PF. If the pulmonologist says you may have an autoimmune disease, has he referred you to a rheumatologist? That sounds like what you need. > > All, > > Fifteen months ago I was diagnosed with mild PF and mild HP and ten months ago sleep apnea. After going on CPAP I felt better going from weal to fatigued alot. > > Last week I went to my Pulmonoligist who told me my PFT was again stable which is good news, except he says I should feel better than I do. I told him the dermatologist says I have an autoimmune disease affecting my hand ( I think it looks like mechanic's hand, but it has not been called that. Pulmonoligist says I may have an autoimmune disease. > > I know you all advise everyone to go to a center of excellence but that will not work for me. I go to a pulmonologist to a city not far from here. He was recommended by my cardiologist (who is a researcher ) due to Pulmonolgist having success in treating PF. > > I am frustrated because of not having of final diagnosis which I realise may be slow or perhaps never and because I find it so difficult to get daily life taken care of - job, house, errands. I have paced myself for years which means I leave out the fun and social. > > Pulmonlogist keeps going back to the first PFT before I saw him which was severe. Is it possible to have a bad day and they test and it is severe? > > And why don't I feel better? > > Any advice? > > Gale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Bruce, I believe his definition of success was determining the type of PF it was. My internist told me types of autoimmune disease that attacks your hand does not affect your organs. To my understanding that is incorrect? Am I right? Pulmonologist did blood work last year and he said autoimmune was up very little. He has talked about referring me to rheumatologist but has not yet. Gale To: Breathe-Support Sent: Sat, January 30, 2010 3:02:47 PMSubject: Re: Frustrated GaleYou can't get to any teaching hospital with an Interstitial Lung Diseasedepartment?I'm not comfortable with some of what is in your post. You were referredto a doctor who had success in treating PF? I guess it's how you definesuccess. The fact you haven't been through the blood work and evenperhaps muscle biopsy for Dermatomyositis or other Connective TissueDiseases is disturbing, especially since your Dermatologist feels youmay have it. It's critical to find out because they could treat theConnective Tissue Disease and it might stabilize the PF. If thepulmonologist says you may have an autoimmune disease, has he referredyou to a rheumatologist? That sounds like what you need.>> All,>> Fifteen months ago I was diagnosed with mild PF and mild HP and tenmonths ago sleep apnea. After going on CPAP I felt better going fromweal to fatigued alot.>> Last week I went to my Pulmonoligist who told me my PFT was againstable which is good news, except he says I should feel better than Ido. I told him the dermatologist says I have an autoimmune diseaseaffecting my hand ( I think it looks like mechanic's hand, but it hasnot been called that. Pulmonoligist says I may have an autoimmunedisease.>> I know you all advise everyone to go to a center of excellence butthat will not work for me. I go to a pulmonologist to a city not farfrom here. He was recommended by my cardiologist (who is a researcher )due to Pulmonolgist having success in treating PF.>> I am frustrated because of not having of final diagnosis which Irealise may be slow or perhaps never and because I find it so difficultto get daily life taken care of - job, house, errands. I have pacedmyself for years which means I leave out the fun and social.>> Pulmonlogist keeps going back to the first PFT before I saw him whichwas severe. Is it possible to have a bad day and they test and it issevere?>> And why don't I feel better?>> Any advice?>> Gale> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Gale, To give you an example, the most prominent symptom of my dermatomyositis has always been the "mechanic hand" rash on my hands. For your internist to say that "types of autoimmune disease that attacks your hand does not affect your organs." is completely absurd. Rashes, regardless of where they are on your body can be symptoms of underlying problems some of the auto-immune in nature. I also find it concerning that he states he tested you for autoimmune and "he said autoimmune was up very little". I don't even know what that means. What test did he do? What was he looking for? There are many many auto-immune disorders many of which can cause lung disease. Gale I can't recommend strongly enough that you get yourself to a rheumatologist. You need to be evaluated post haste. You don't say where you live so I can't make specific suggestions. I know you say you can't get to one of the "Centers of Excellence". That's fine, there are many many other university medical centers with specialists in ILD's. Please give serious consideration to going to one of these so that you can be thoroughly evaluated. I'm sorry you feel so lousy. Part of the reality of lung disease is getting used to a certain level of discomfort and fatigue that is just always there. But it's possible that you may be able to feel better if you can get accurate diagnosis and possible treatment if you do have an auto-immune issue. Please look after yourself. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, January 30, 2010 8:18:21 PMSubject: Re: Re: Frustrated Bruce, I believe his definition of success was determining the type of PF it was. My internist told me types of autoimmune disease that attacks your hand does not affect your organs. To my understanding that is incorrect? Am I right? Pulmonologist did blood work last year and he said autoimmune was up very little. He has talked about referring me to rheumatologist but has not yet. Gale From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 30, 2010 3:02:47 PMSubject: Re: Frustrated GaleYou can't get to any teaching hospital with an Interstitial Lung Diseasedepartment?I'm not comfortable with some of what is in your post. You were referredto a doctor who had success in treating PF? I guess it's how you definesuccess. The fact you haven't been through the blood work and evenperhaps muscle biopsy for Dermatomyositis or other Connective TissueDiseases is disturbing, especially since your Dermatologist feels youmay have it. It's critical to find out because they could treat theConnective Tissue Disease and it might stabilize the PF. If thepulmonologist says you may have an autoimmune disease, has he referredyou to a rheumatologist? That sounds like what you need.>> All,>> Fifteen months ago I was diagnosed with mild PF and mild HP and tenmonths ago sleep apnea. After going on CPAP I felt better going fromweal to fatigued alot.>> Last week I went to my Pulmonoligist who told me my PFT was againstable which is good news, except he says I should feel better than Ido. I told him the dermatologist says I have an autoimmune diseaseaffecting my hand ( I think it looks like mechanic's hand, but it hasnot been called that. Pulmonoligist says I may have an autoimmunedisease.>> I know you all advise everyone to go to a center of excellence butthat will not work for me. I go to a pulmonologist to a city not farfrom here. He was recommended by my cardiologist (who is a researcher )due to Pulmonolgist having success in treating PF.>> I am frustrated because of not having of final diagnosis which Irealise may be slow or perhaps never and because I find it so difficultto get daily life taken care of - job, house, errands. I have pacedmyself for years which means I leave out the fun and social.>> Pulmonlogist keeps going back to the first PFT before I saw him whichwas severe. Is it possible to have a bad day and they test and it issevere?>> And why don't I feel better?>> Any advice?>> Gale> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Gale There are just way too many open questions. Talking about referring you to a rheumatologist doesn't accomplish anything. If it was worthy of talk, the referral would have made sense to me. Yes, there are many situations in which autoimmune diseases don't attack organs, but your organs have been attacked. You say he's successful in determining what type? Has he done so in your case? Most autoimmune diseases can lead to damage to organs and in many cases for even those that can't, they're often found in conjunction with other autoimmune diseases. The reality is your lungs have fibrosis and more than one of your doctors suspects you may have an autoimmune disease and that just needs to be explored more fully. I'm imagining insurance must be what is preventing you from seeing another doctor but regardless you need to push for more than you're getting. It may lead you nowhere but it also may lead you to uncovering a treatable condition. > > > > All, > > > > Fifteen months ago I was diagnosed with mild PF and mild HP and ten > months ago sleep apnea. After going on CPAP I felt better going from > weal to fatigued alot. > > > > Last week I went to my Pulmonoligist who told me my PFT was again > stable which is good news, except he says I should feel better than I > do. I told him the dermatologist says I have an autoimmune disease > affecting my hand ( I think it looks like mechanic's hand, but it has > not been called that. Pulmonoligist says I may have an autoimmune > disease. > > > > I know you all advise everyone to go to a center of excellence but > that will not work for me. I go to a pulmonologist to a city not far > from here. He was recommended by my cardiologist (who is a researcher ) > due to Pulmonolgist having success in treating PF. > > > > I am frustrated because of not having of final diagnosis which I > realise may be slow or perhaps never and because I find it so difficult > to get daily life taken care of - job, house, errands. I have paced > myself for years which means I leave out the fun and social. > > > > Pulmonlogist keeps going back to the first PFT before I saw him which > was severe. Is it possible to have a bad day and they test and it is > severe? > > > > And why don't I feel better? > > > > Any advice? > > > > Gale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 i don't understand do you have to get a referral can't you just make an appointment with any type of specialist that you want to see i am used to personal choice so i never needed a referrral Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: FrustratedTo: Breathe-Support Date: Saturday, January 30, 2010, 8:18 PM Bruce, I believe his definition of success was determining the type of PF it was. My internist told me types of autoimmune disease that attacks your hand does not affect your organs. To my understanding that is incorrect? Am I right? Pulmonologist did blood work last year and he said autoimmune was up very little. He has talked about referring me to rheumatologist but has not yet. Gale From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 30, 2010 3:02:47 PMSubject: Re: Frustrated GaleYou can't get to any teaching hospital with an Interstitial Lung Diseasedepartment?I'm not comfortable with some of what is in your post. You were referredto a doctor who had success in treating PF? I guess it's how you definesuccess. The fact you haven't been through the blood work and evenperhaps muscle biopsy for Dermatomyositis or other Connective TissueDiseases is disturbing, especially since your Dermatologist feels youmay have it. It's critical to find out because they could treat theConnective Tissue Disease and it might stabilize the PF. If thepulmonologist says you may have an autoimmune disease, has he referredyou to a rheumatologist? That sounds like what you need.>> All,>> Fifteen months ago I was diagnosed with mild PF and mild HP and tenmonths ago sleep apnea. After going on CPAP I felt better going fromweal to fatigued alot.>> Last week I went to my Pulmonoligist who told me my PFT was againstable which is good news, except he says I should feel better than Ido. I told him the dermatologist says I have an autoimmune diseaseaffecting my hand ( I think it looks like mechanic's hand, but it hasnot been called that. Pulmonoligist says I may have an autoimmunedisease.>> I know you all advise everyone to go to a center of excellence butthat will not work for me. I go to a pulmonologist to a city not farfrom here. He was recommended by my cardiologist (who is a researcher )due to Pulmonolgist having success in treating PF.>> I am frustrated because of not having of final diagnosis which Irealise may be slow or perhaps never and because I find it so difficultto get daily life taken care of - job, house, errands. I have pacedmyself for years which means I leave out the fun and social.>> Pulmonlogist keeps going back to the first PFT before I saw him whichwas severe. Is it possible to have a bad day and they test and it issevere?>> And why don't I feel better?>> Any advice?>> Gale> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Hi Gale, I was suffering from auto-immune for awhile until I was diagnosed Nov 09. I would go to a rheumotologist with the symptoms of Sjogrens's - they would do tests and it came back negative. This happened 3 times in 4 years. The only thing that was slightly elevated was my SED rate, it was 38 when it can't be more than 30. When I went for the first time to NY Presbyterian I was starting to get joint pain, swelling along with the dry mouth and dry eyes I lived with for years and dr. said it was a flare up- did tests again and my ck (inflammation) factor was 2700 (highest it can be is app. 200). False negatives with Sjogren's is 40% and who knows-maybe if I was diagnosed earlier it might not have damaged my lungs. The point of knowing about whether you have auto=immune is that they can treat it and it slows the progression of PF. It definitely is worth it to see a rheumy. Take care! nne, ILD 6/09, Fibrotic NSIP 11/09 > > > > All, > > > > Fifteen months ago I was diagnosed with mild PF and mild HP and ten > months ago sleep apnea. After going on CPAP I felt better going from > weal to fatigued alot. > > > > Last week I went to my Pulmonoligist who told me my PFT was again > stable which is good news, except he says I should feel better than I > do. I told him the dermatologist says I have an autoimmune disease > affecting my hand ( I think it looks like mechanic's hand, but it has > not been called that. Pulmonoligist says I may have an autoimmune > disease. > > > > I know you all advise everyone to go to a center of excellence but > that will not work for me. I go to a pulmonologist to a city not far > from here. He was recommended by my cardiologist (who is a researcher ) > due to Pulmonolgist having success in treating PF. > > > > I am frustrated because of not having of final diagnosis which I > realise may be slow or perhaps never and because I find it so difficult > to get daily life taken care of - job, house, errands. I have paced > myself for years which means I leave out the fun and social. > > > > Pulmonlogist keeps going back to the first PFT before I saw him which > was severe. Is it possible to have a bad day and they test and it is > severe? > > > > And why don't I feel better? > > > > Any advice? > > > > Gale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 nne, where are you from. I see you have gone to NY Presbyterian. To: Breathe-Support Sent: Sun, January 31, 2010 12:25:44 PMSubject: Re: Frustrated Hi Gale, I was suffering from auto-immune for awhile until I was diagnosed Nov 09. I would go to a rheumotologist with the symptoms of Sjogrens's - they would do tests and it came back negative. This happened 3 times in 4 years. The only thing that was slightly elevated was my SED rate, it was 38 when it can't be more than 30. When I went for the first time to NY Presbyterian I was starting to get joint pain, swelling along with the dry mouth and dry eyes I lived with for years and dr. said it was a flare up- did tests again and my ck (inflammation) factor was 2700 (highest it can be is app. 200). False negatives with Sjogren's is 40% and who knows-maybe if I was diagnosed earlier it might not have damaged my lungs. The point of knowing about whether you have auto=immune is that they can treat it and it slows the progression of PF. It definitely is worth it to see a rheumy. Take care! nne, ILD 6/09, Fibrotic NSIP 11/09 > > > > All, > > > > Fifteen months ago I was diagnosed with mild PF and mild HP and ten > months ago sleep apnea. After going on CPAP I felt better going from > weal to fatigued alot. > > > > Last week I went to my Pulmonoligist who told me my PFT was again > stable which is good news, except he says I should feel better than I > do. I told him the dermatologist says I have an autoimmune disease > affecting my hand ( I think it looks like mechanic's hand, but it has > not been called that. Pulmonoligist says I may have an autoimmune > disease. > > > > I know you all advise everyone to go to a center of excellence but > that will not work for me. I go to a pulmonologist to a city not far > from here. He was recommended by my cardiologist (who is a researcher ) > due to Pulmonolgist having success in treating PF. > > > > I am frustrated because of not having of final diagnosis which I > realise may be slow or perhaps never and because I find it so difficult > to get daily life taken care of - job, house, errands. I have paced > myself for years which means I leave out the fun and social. > > > > Pulmonlogist keeps going back to the first PFT before I saw him which > was severe. Is it possible to have a bad day and they test and it is > severe? > > > > And why don't I feel better? > > > > Any advice? > > > > Gale > > > Quote Link to comment Share on other sites More sharing options...
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