Guest guest Posted October 13, 2007 Report Share Posted October 13, 2007 Hi all, My name is Sandie and I was just diagnosed with Pulmonary Fibrosis, waiting to go to the Mayo Clinic because I also have RA and I am unable to fight off infections. I am 36 years old. My questions are this. Since I have hounded doctors to listen to me that something is wrong finally one of them sent me in for all these tests and found the minimal honeycombing on my lung. He said its minimal and I am not dieing yet nonetheless its still pulmonary fibrosis and because everyone is so different they just have to watch and see what will happen. I dont think thats right because what I have read is that once it goes into advanced stage there is nothing they can do because there is no cure. What should I be doing now? Thanks so much Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2007 Report Share Posted October 13, 2007 Hi Sandie, My heart breaks each time someone young like you comes into our group. My story is somewhat like yours. I was diagnosed with mixed connective tissue dissease (RA, Lupus, and Sjogren's) when I was 33. It worked me over and finally ended up in my lungs in 1997. I had a few years before that when I had lung involvment but was not diagnosed earlier. My pulmonary and rheumatology doctors have worked together and have kept me going 10 years since biopsy. I take Cellcept to help control my immune disorder. In 2004 I developed Bronchiectasis which is common to late stage fibrosis. It is so miserable. You are just starting this journey with fibrosis, but it sounds like you have had some experience with disease. Continue your quest for knowledge. That and faith are your best tools. So glad that you landed here. We need each other. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. >> Hi all,> > My name is Sandie and I was just diagnosed with Pulmonary Fibrosis, > waiting to go to the Mayo Clinic because I also have RA and I am unable > to fight off infections. I am 36 years old.> > My questions are this. Since I have hounded doctors to listen to me > that something is wrong finally one of them sent me in for all these > tests and found the minimal honeycombing on my lung. He said its > minimal and I am not dieing yet nonetheless its still pulmonary > fibrosis and because everyone is so different they just have to watch > and see what will happen. I dont think thats right because what I have > read is that once it goes into advanced stage there is nothing they can > do because there is no cure. What should I be doing now?> > Thanks so much> > Sandie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 YEah I know it the Metho causes PF and it will probably be something they take me off of but right now no one wants to mess with my meds, not the internist and my RA doc hasnt seen the results yet. I will have to fax them over to her. I hope to find out today about this whole waiting thing on the Mayo so hopefully its more clear then. - Thanks for hte information on the VATS, I did read some on that and I got some good information from the Pulmonary FIbrosis Foundation, they have a patient hand out has lots of good information in it. I just dont have patience for things like this. Even though I have RA, Fibermyalgia I still work full time as a software engineer, work part time as a cook at a restaurant (2 nights a week) and work at a food store a couple nights a week. There are a lot of things I get to tired to do or a lot of things in my life I have had to modify since I was diagnosed with RA in 2001 it took a few years but I felt the impact on me by not listening to body telling me to slow down. I dont let RA run my life but I make adjustments for it as I need to. I am not a person to let PF run my life either as I have worked to far to get to this point in my life to give up. I made it through 16 years of an abusive relationship and finally one day had enough and said no more and that was the end of him and I, it was pure hell and our divorce was pure hell through it. I raised those kids and paid everyone of those bills and never lost my house or anything it was a great feeling for me to do, I knew I could do anything then, and it was during that time I was diagnosed with RA. I met a man who I had dated way back when I was 16 we started talking again and here we are several years later and today we have been married a little over a year, my kids are daughter is almost 21 with a 4 month old little boy, my son is almost 19 and has an almost 1 year old and getting ready to go in the National guard, and I have a 16 year old. So I am at the point in my life where its almost time for just my husband and I and I am not willing to let that go as we have to many plans so this PF stuff will just have to wait! Sorry babbling its been a tough weekend - I have been dealing with an infection in my face (cellulits and whatever else) been through CT's, MRI's, ENT's you name it)finally got to an endodontist and she thinks she knows why I get these face infections, she doesnt know why I cant fight anything. Get this when I was in the hospital a few weeks ago for the face infection, I got 120mg of prednisone a day (which she put it under another name so I wouldnt know) and then 2000mg of Vanko twice a day, no I didnt mistype that - the dentist and surgeon just about fell over. You could tell they were jsut trying to get the swelling in my face down and push me out the door because they didnt know what to do with me. They always call the CDC when I come in. Thats always fun! Thanks for listening to me babble, just wanted to fill you all in a little bit about me and what I am like. Sandie > > > > & g t ; > > > > > > > > > Hi all, > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > > > Fibrosis, > > > > > > > waiting to go to the Mayo Clinic because I also have RA and > > I am > > > > > > unable > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > > listen to > > > > > me > > > > > > > that something is wrong finally one of them sent me in for > > all > > > > > these > > > > > > > tests and found the minimal honeycombing on my lung. He > > said its > > > > > > > minimal and I am not dieing yet nonetheless its still > > pulmonary > > > > > > > fibrosis and because everyone is so different they just > > have to > > > > > watch > > > > > > > and see what will happen. I dont think thats right because > > what > > > I > > > > > have > > > > > > > read is that once it goes into advanced stage there is > > nothing > > > > > they > > > > > & g t; can > > > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release Date: 10/14/2007 9:22 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Kathy sounds like me but I come off and on metho all the time when I am sick and this is the first doctor to order any kind of PFT, HRCT, and Echo so I am grateful he did it but its the docs that specailize in RA that are supposed to be doing this as a routine thats what makes me upset. My ex-husbands dad died 2 years ago from RA in his lungs he was 59 years old we had the same RA doc it took me a year but I switched from her thought she could have done more had she doen the normal tests she was supposed to do. Sandie > > > > > & g t ; > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > Pulmonary > > > > > > Fibrosis, > > > > > > > > waiting to go to the Mayo Clinic because I also have RA > and > > > I am > > > > > > > unable > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > > > listen to > > > > > > me > > > > > > > > that something is wrong finally one of them sent me in > for > > > all > > > > > > these > > > > > > > > tests and found the minimal honeycombing on my lung. He > > > said its > > > > > > > > minimal and I am not dieing yet nonetheless its still > > > pulmonary > > > > > > > > fibrosis and because everyone is so different they just > > > have to > > > > > > watch > > > > > > > > and see what will happen. I dont think thats right > because > > > what > > > > I > > > > > > have > > > > > > > > read is that once it goes into advanced stage there is > > > nothing > > > > > > they > > > > > > & g t; can > > > > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >----------------------------------------------------------------- -- > ----- > > > > > >No virus found in this incoming message. > > >Checked by AVG Free Edition. > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release Date: > 10/14/2007 9:22 AM > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Kathy sounds like me but I come off and on metho all the time when I am sick and this is the first doctor to order any kind of PFT, HRCT, and Echo so I am grateful he did it but its the docs that specailize in RA that are supposed to be doing this as a routine thats what makes me upset. My ex-husbands dad died 2 years ago from RA in his lungs he was 59 years old we had the same RA doc it took me a year but I switched from her thought she could have done more had she doen the normal tests she was supposed to do. Sandie > > > > > & g t ; > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > Pulmonary > > > > > > Fibrosis, > > > > > > > > waiting to go to the Mayo Clinic because I also have RA > and > > > I am > > > > > > > unable > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > > > listen to > > > > > > me > > > > > > > > that something is wrong finally one of them sent me in > for > > > all > > > > > > these > > > > > > > > tests and found the minimal honeycombing on my lung. He > > > said its > > > > > > > > minimal and I am not dieing yet nonetheless its still > > > pulmonary > > > > > > > > fibrosis and because everyone is so different they just > > > have to > > > > > > watch > > > > > > > > and see what will happen. I dont think thats right > because > > > what > > > > I > > > > > > have > > > > > > > > read is that once it goes into advanced stage there is > > > nothing > > > > > > they > > > > > > & g t; can > > > > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >----------------------------------------------------------------- -- > ----- > > > > > >No virus found in this incoming message. > > >Checked by AVG Free Edition. > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release Date: > 10/14/2007 9:22 AM > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 See how is that fair? Here we trust them to take care of us and they dont tell us, go home and pray! I cant imagine that what kind of doctor is that! I am glad you found some one good and that he keeps you going strong. I know I am not ready to go yet either. I lost my grandma my only grandma I ever knew the same day my son was stabbed, it was the hardest day of my life and a day I will never forget, I lost my grandma and the son I knew that day.... He still isnt the same kid he was then but I thank god he is alive and here. Yesterday I went to the cemetary (ah I didnt go home and relieve my son who had his son, I love my grandson but I dont want to raise him) so instead I went to the cemetary and to a friends house I havent been able to visit with for a long time. It was a nice and a good shoulder to cry on. I am slowing down you wouldnt know but truly I am and have a few years ago I wouldnt let the vacumning go one day or anything like that now I can, its taken awhile but I can do it now...I had work on my desk from my day job I was supposed to do over the weekend, I didn t do that either, I read a book instead! See I can slow down and I do I have learned its hard to accept but I do do it because my body wont allow me to go sometimes......... It has been the biggest challenge for me with having RA! Sandie > > > > > > > & g t ; > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > Pulmonary > > > > > > > > Fibrosis, > > > > > > > > > > waiting to go to the Mayo Clinic because I also have > > RA > > > and > > > > > I am > > > > > > > > > unable > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > > > > > listen to > > > > > > > > me > > > > > > > > > > that something is wrong finally one of them sent me > > in > > > for > > > > > all > > > > > > > > these > > > > > > > > > > tests and found the minimal honeycombing on my lung. > > He > > > > > said its > > > > > > > > > > minimal and I am not dieing yet nonetheless its still > > > > > pulmonary > > > > > > > > > > fibrosis and because everyone is so different they > > just > > > > > have to > > > > > > > > watch > > > > > > > > > > and see what will happen. I dont think thats right > > > because > > > > > what > > > > > > I > > > > > > > > have > > > > > > > > > > read is that once it goes into advanced stage there is > > > > > nothing > > > > > > > > they > > > > > > > > & g t; can > > > > > > > > > > do because there is no cure. What should I be doing > > now? > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------- ---- > > -- > > > ----- > > > > > > > > > >No virus found in this incoming message. > > > > >Checked by AVG Free Edition. > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > > Date: > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 See how is that fair? Here we trust them to take care of us and they dont tell us, go home and pray! I cant imagine that what kind of doctor is that! I am glad you found some one good and that he keeps you going strong. I know I am not ready to go yet either. I lost my grandma my only grandma I ever knew the same day my son was stabbed, it was the hardest day of my life and a day I will never forget, I lost my grandma and the son I knew that day.... He still isnt the same kid he was then but I thank god he is alive and here. Yesterday I went to the cemetary (ah I didnt go home and relieve my son who had his son, I love my grandson but I dont want to raise him) so instead I went to the cemetary and to a friends house I havent been able to visit with for a long time. It was a nice and a good shoulder to cry on. I am slowing down you wouldnt know but truly I am and have a few years ago I wouldnt let the vacumning go one day or anything like that now I can, its taken awhile but I can do it now...I had work on my desk from my day job I was supposed to do over the weekend, I didn t do that either, I read a book instead! See I can slow down and I do I have learned its hard to accept but I do do it because my body wont allow me to go sometimes......... It has been the biggest challenge for me with having RA! Sandie > > > > > > > & g t ; > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > Pulmonary > > > > > > > > Fibrosis, > > > > > > > > > > waiting to go to the Mayo Clinic because I also have > > RA > > > and > > > > > I am > > > > > > > > > unable > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > > > > > listen to > > > > > > > > me > > > > > > > > > > that something is wrong finally one of them sent me > > in > > > for > > > > > all > > > > > > > > these > > > > > > > > > > tests and found the minimal honeycombing on my lung. > > He > > > > > said its > > > > > > > > > > minimal and I am not dieing yet nonetheless its still > > > > > pulmonary > > > > > > > > > > fibrosis and because everyone is so different they > > just > > > > > have to > > > > > > > > watch > > > > > > > > > > and see what will happen. I dont think thats right > > > because > > > > > what > > > > > > I > > > > > > > > have > > > > > > > > > > read is that once it goes into advanced stage there is > > > > > nothing > > > > > > > > they > > > > > > > > & g t; can > > > > > > > > > > do because there is no cure. What should I be doing > > now? > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------- ---- > > -- > > > ----- > > > > > > > > > >No virus found in this incoming message. > > > > >Checked by AVG Free Edition. > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > > Date: > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2007 Report Share Posted October 22, 2007 my husband goes to the Mayo Clinic in Rochester MN - he saw Dr Limper in the pulmo. division. Let us know how it goes. Kim Re: New THANK YOU ALL for your information! It helps me so much! I am still kind of in shock at all of this and my husband is kind of in denial I think. he tends to believe doctors when they say something I on the other hand dont. After all I got the flesh eating bacteria from a doctors clinic, a contaminated bottle of lidocaine. I just dont trust them much since then.Joyce, I take methotrexate and Orencia been on the metho for several years and Orencia has been a few months although I have had to miss the last 2 times because of being sick. I dont have a lung doctor apparently they referred me to the Mayo Clinic in Rochester, MN so I am waiting until Monday when the internists office calls and tells me what is going on. I just dont like this sitting around waiting for something to happen. especially when I had to HOUND to even get this far and its not their lungs or their life its mine.I will keep hounding.I think your name is , what are VATS? Sorry dont know what that is yet. Sandie > > & g t ; > >> > > > > Hi all,> > > > >> > > > > My name is Sandie and I was just diagnosed with Pulmonary> > > Fibrosis,> > > > > waiting to go to the Mayo Clinic because I also have RA and I am> > > > unable> > > > > to fight off infections. I am 36 years old.> > > > >> > > > > My questions are this. Since I have hounded doctors to listen to> > > me> > > > > that something is wrong finally one of them sent me in for all> > > these> > > > > tests and found the minimal honeycombing on my lung. He said its> > > > > minimal and I am not dieing yet nonetheless its still pulmonary> > > > > fibrosis and because everyone is so different they just have to> > > watch> > > > > and see what will happen. I dont think thats right because what> I> > > have> > > > > read is that once it goes into advanced stage there is nothing> > > they> > > & g t; can> > > > > do because there is no cure. What should I be doing now?> > > > >> > > > > Thanks so much> > > > >> > > > > Sandie> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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