Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 My PFTs were today, but no DLCO (my last was 26%). My FEV 1 was 1.56 out of a Predicted 3.06. I walked a measly 646 feet on my 6 minute walk (worst ever), my sats dropped to 82%, and I finished at 10 liters but could have used more. My doc took me off the CellCept after 2 years, as we've ALL decided it isn't working. The kicker is that (I can almost hear the moans and groans) he actually wants to increase my Prednisone from 10 to 40 mg. for two weeks. He's not insistent, because he knows I have too many reservations. Truth is, I haven't decided about this yet, although I probably won't do it. Tack on 30 more mg to current depression? Probably isn't a great idea. They finally did get my chart information to San , and I have an appointment there Feb. 1. All they're going to require of me is an x-ray, blood work, social worker consult, and to meet the doctors, thank goodness. Judy, You are warmly welcomed to this group of caring and knowledgeable people. I'm sorry you also have IPF (me too) - when were you diagnosed? I was also being mistreated for asthma. Thank you for the information about yourself. Know that you're not alone. FYI,we have another Judy who was transplanted recently. Leanne, Amen to " Now Is The Time " . It says it perfectly. Thank you, I'll keep this one. Todd, Great photos of the Tetons!! I'm a mountain girl at heart. You have a lovely family. I'll bet that trip was a good one. Your headaches could also be cluster headaches...just a thought. I got a headache immediately today upon doing my PFTs. Blow, blow, blow usually means a headache for me, as can coughing (especially in the temples). Nausea that improves with eating is sometimes a sign of an ulcer. I agree that your symptoms sound much like IPF. But it does seem premature to recommend transplant even before testing your lung volumes or having a biopsy. Transplant evaluation is about a 6-day process that includes a LOT of tests: CTs, MRIs, heart cath, and many more. Bruce answered your question about VATS. That's what I had, and I was in the hospital 2 nights and 3 days. I HAD to know, although I didn't fully realize how much of a non-answer IPF is - i.e., all the lack of concrete answers, lack of knowledge about the causes or disease process, lack of treatment, etc. , I adore your post about this site. You have never even come close to offending me, and I can't see it ever happening. Big hugs to you when you're scilly or serious - I'll take you either way... in fact I need you both ways! You don't mention the Russians - do you like Rachmaninoff? I DO. Your page-turning experience is thrilling. I have a Russian cousin-by-marriage who competed in our prestigious Van Cliburn International Piano Competition here in Fort Worth, and then went on to win the Leeds in London. Cool, huh? I could listen to him play for days on end!!! Ilya Itin is his name. Sher, Awwwwww- the photos of you and Rosebud are absolutely heart-warming. I'm glad she gives you so much comfort. I have to admit my daughter gave me a stuffed dog that looks very much like my Misha, which I set on my bed the 3 nights that she was in the hospital. It actually helped a tiny bit to give it an occasional squeeze. Misha's going back for a re-check in a week - we've ruled out some bad things, but we don't have the full story yet. At least she's doing better. Joyce, Terrific SERMON #!. I'd hate the hospital bed too, but probably not for long if it led to better, more restful sleep (yeah, I know, another one of those " acceptance plateaus " that we experience). That's what I'm hoping happens right away for you. I don't want you to have to change docs, but if you have to consult with the new MD, at least he comes highly qualified. You'll be the perfect judge of if he's also a good healer and compassionate person. You surely have a lot of beautiful grandchildren! Thanks for the photos of YOU and Lucian especially. Yeay, jammies! Peggy, Wonderful story. I do try to live my life in seasons instead of by years. It was good advice from my sweet pulmonologist. Still depressed here. Ridin' it out as best I can. Hugs and blessings, Gwynne IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Gwynne... my best thoughts are your way about Misha. I'm sure you saw my little Lola in the pink chair. How I love that dog. She was the shy one of the bunch and therefore 'wimpy' about everything. She needs her 'mommy' all the time. lol Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! PFTs etc. My PFTs were today, but no DLCO (my last was 26%).My FEV 1 was 1.56 out of a Predicted 3.06. I walked ameasly 646 feet on my 6 minute walk (worst ever), mysats dropped to 82%, and I finished at 10 liters but couldhave used more.My doc took me off the CellCept after 2 years, as we'veALL decided it isn't working. The kicker is that (I canalmost hear the moans and groans) he actually wantsto increase my Prednisone from 10 to 40 mg. for twoweeks. He's not insistent, because he knows I havetoo many reservations. Truth is, I haven't decided aboutthis yet, although I probably won't do it. Tack on 30 moremg to current depression? Probably isn't a great idea.They finally did get my chart information to San ,and I have an appointment there Feb. 1. All they're goingto require of me is an x-ray, blood work, social workerconsult, and to meet the doctors, thank goodness.Judy,You are warmly welcomed to this group of caring andknowledgeable people. I'm sorry you also have IPF(me too) - when were you diagnosed? I was also beingmistreated for asthma. Thank you for the informationabout yourself. Know that you're not alone.FYI,we have another Judy who was transplanted recently.Leanne,Amen to "Now Is The Time". It says it perfectly. Thank you,I'll keep this one.Todd,Great photos of the Tetons!! I'm a mountain girl at heart.You have a lovely family. I'll bet that trip was a good one.Your headaches could also be cluster headaches...just athought. I got a headache immediately today upon doingmy PFTs. Blow, blow, blow usually means a headache forme, as can coughing (especially in the temples).Nausea that improves with eating is sometimes a sign ofan ulcer.I agree that your symptoms sound much like IPF. But itdoes seem premature to recommend transplant evenbefore testing your lung volumes or having a biopsy.Transplant evaluation is about a 6-day process thatincludes a LOT of tests: CTs, MRIs, heart cath, and manymore. Bruce answered your question about VATS. That'swhat I had, and I was in the hospital 2 nights and 3 days.I HAD to know, although I didn't fully realize how muchof a non-answer IPF is - i.e., all the lack of concrete answers,lack of knowledge about the causes or disease process,lack of treatment, etc.,I adore your post about this site. You have never even comeclose to offending me, and I can't see it ever happening.Big hugs to you when you're scilly or serious - I'll take youeither way... in fact I need you both ways!You don't mention the Russians - do you like Rachmaninoff?I DO. Your page-turning experience is thrilling. I have aRussian cousin-by-marriage who competed in our prestigiousVan Cliburn International Piano Competition here in FortWorth, and then went on to win the Leeds in London. Cool,huh? I could listen to him play for days on end!!! Ilya Itinis his name.Sher,Awwwwww- the photos of you and Rosebud areabsolutely heart-warming. I'm glad she gives youso much comfort. I have to admit my daughter gave mea stuffed dog that looks very much like my Misha, whichI set on my bed the 3 nights that she was in the hospital.It actually helped a tiny bit to give it an occasional squeeze.Misha's going back for a re-check in a week - we've ruledout some bad things, but we don't have the full story yet.At least she's doing better.Joyce,Terrific SERMON #!. I'd hate the hospital bed too, butprobably not for long if it led to better, more restfulsleep (yeah, I know, another one of those "acceptanceplateaus" that we experience). That's what I'm hopinghappens right away for you. I don't want you to have tochange docs, but if you have to consult with the new MD,at least he comes highly qualified. You'll be the perfectjudge of if he's also a good healer and compassionateperson.You surely have a lot of beautiful grandchildren! Thanks forthe photos of YOU and Lucian especially. Yeay, jammies!Peggy,Wonderful story. I do try to live my life in seasons insteadof by years. It was good advice from my sweet pulmonologist.Still depressed here. Ridin' it out as best I can.Hugs and blessings,Gwynne IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Gwynne...I totally overlooked sending you a hug concerning the depression. I know all about that stuff! I take Cymbalta every day. It has made a good difference in my life. When we are prone to depression we sometimes don't know what sets it into motion. It sucks anyway. If it helps, you sure "sound good" on the board! Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: PFTs etc. GwynneYour PFT's remind me how dangerous any one indicator can be. I'm early and mine is so mild today compared to yours but yet my FEV1 is actually worse. I still say the mouthpiece was too big for me. lol.If you do the Prednisone please make sure someone who will see you regularly is aware so they'll recognize signs that it is causing too much depression. Wouldn't a try of a smaller increase like to 20 make more sense. I know he's trying to hit hard, but it just seems to me high side effect drugs should be increased gradually, not quadrupled. So glad they aren't putting you through the ringer in San . Thank goodness they actually will trust that the doctors at UTSW knew how to run tests.>> > My PFTs were today, but no DLCO (my last was 26%).> My FEV 1 was 1.56 out of a Predicted 3.06. I walked a> measly 646 feet on my 6 minute walk (worst ever), my> sats dropped to 82%, and I finished at 10 liters but could> have used more.> My doc took me off the CellCept after 2 years, as we've> ALL decided it isn't working. The kicker is that (I can> almost hear the moans and groans) he actually wants> to increase my Prednisone from 10 to 40 mg. for two> weeks. He's not insistent, because he knows I have> too many reservations. Truth is, I haven't decided about> this yet, although I probably won't do it. Tack on 30 more> mg to current depression? Probably isn't a great idea.> > They finally did get my chart information to San ,> and I have an appointment there Feb. 1. All they're going> to require of me is an x-ray, blood work, social worker> consult, and to meet the doctors, thank goodness.> > Judy,> You are warmly welcomed to this group of caring and> knowledgeable people. I'm sorry you also have IPF> (me too) - when were you diagnosed? I was also being> mistreated for asthma. Thank you for the information> about yourself. Know that you're not alone.> FYI,we have another Judy who was transplanted recently.> > Leanne,> Amen to "Now Is The Time". It says it perfectly. Thank you,> I'll keep this one.> > Todd,> Great photos of the Tetons!! I'm a mountain girl at heart.> You have a lovely family. I'll bet that trip was a good one.> Your headaches could also be cluster headaches...just a> thought. I got a headache immediately today upon doing> my PFTs. Blow, blow, blow usually means a headache for> me, as can coughing (especially in the temples).> Nausea that improves with eating is sometimes a sign of> an ulcer.> I agree that your symptoms sound much like IPF. But it> does seem premature to recommend transplant even> before testing your lung volumes or having a biopsy.> Transplant evaluation is about a 6-day process that> includes a LOT of tests: CTs, MRIs, heart cath, and many> more. Bruce answered your question about VATS. That's> what I had, and I was in the hospital 2 nights and 3 days.> I HAD to know, although I didn't fully realize how much> of a non-answer IPF is - i.e., all the lack of concrete answers,> lack of knowledge about the causes or disease process,> lack of treatment, etc.> > ,> I adore your post about this site. You have never even come> close to offending me, and I can't see it ever happening.> Big hugs to you when you're scilly or serious - I'll take you> either way... in fact I need you both ways!> You don't mention the Russians - do you like Rachmaninoff?> I DO. Your page-turning experience is thrilling. I have a> Russian cousin-by-marriage who competed in our prestigious> Van Cliburn International Piano Competition here in Fort> Worth, and then went on to win the Leeds in London. Cool,> huh? I could listen to him play for days on end!!! Ilya Itin> is his name.> > Sher,> Awwwwww- the photos of you and Rosebud are> absolutely heart-warming. I'm glad she gives you> so much comfort. I have to admit my daughter gave me> a stuffed dog that looks very much like my Misha, which> I set on my bed the 3 nights that she was in the hospital.> It actually helped a tiny bit to give it an occasional squeeze.> Misha's going back for a re-check in a week - we've ruled> out some bad things, but we don't have the full story yet.> At least she's doing better.> > Joyce,> Terrific SERMON #!. I'd hate the hospital bed too, but> probably not for long if it led to better, more restful> sleep (yeah, I know, another one of those "acceptance> plateaus" that we experience). That's what I'm hoping> happens right away for you. I don't want you to have to> change docs, but if you have to consult with the new MD,> at least he comes highly qualified. You'll be the perfect> judge of if he's also a good healer and compassionate> person.> You surely have a lot of beautiful grandchildren! Thanks for> the photos of YOU and Lucian especially. Yeay, jammies!> > Peggy,> Wonderful story. I do try to live my life in seasons instead> of by years. It was good advice from my sweet pulmonologist.> > Still depressed here. Ridin' it out as best I can.> > Hugs and blessings,> Gwynne IPF 7/04 listed for transplant 3/07 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Funny about the shy ones. Mandi (cat) was the shy one of her litter and although so beautiful, I'm sure thats why her friendly playful sister was selected first. When we picked her up her sister was playing with us wildly and Mandi was hiding. Now Mandi still doesn't like strangers and lots of noise from them but when it comes to or me, she is the most " people " cat you'll ever see. She has to sleep close to you, doesn't have to touch, but be near. She follows you around like a puppy does. Attention and petting are her constant goals in life, well, and playing and she has such an imagination she can go wild playing with just a plastic curly Q. But, maybe that is part of shy that you cling to those you love and are even more affectionate. > > Gwynne... my best thoughts are your way about Misha. I'm sure you saw my little Lola in the pink chair. How I love that dog. She was the shy one of the bunch and therefore 'wimpy' about everything. She needs her 'mommy' all the time. lol > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > PFTs etc. > > > > My PFTs were today, but no DLCO (my last was 26%). > My FEV 1 was 1.56 out of a Predicted 3.06. I walked a > measly 646 feet on my 6 minute walk (worst ever), my > sats dropped to 82%, and I finished at 10 liters but could > have used more. > My doc took me off the CellCept after 2 years, as we've > ALL decided it isn't working. The kicker is that (I can > almost hear the moans and groans) he actually wants > to increase my Prednisone from 10 to 40 mg. for two > weeks. He's not insistent, because he knows I have > too many reservations. Truth is, I haven't decided about > this yet, although I probably won't do it. Tack on 30 more > mg to current depression? Probably isn't a great idea. > > They finally did get my chart information to San , > and I have an appointment there Feb. 1. All they're going > to require of me is an x-ray, blood work, social worker > consult, and to meet the doctors, thank goodness. > > Judy, > You are warmly welcomed to this group of caring and > knowledgeable people. I'm sorry you also have IPF > (me too) - when were you diagnosed? I was also being > mistreated for asthma. Thank you for the information > about yourself. Know that you're not alone. > FYI,we have another Judy who was transplanted recently. > > Leanne, > Amen to " Now Is The Time " . It says it perfectly. Thank you, > I'll keep this one. > > Todd, > Great photos of the Tetons!! I'm a mountain girl at heart. > You have a lovely family. I'll bet that trip was a good one. > Your headaches could also be cluster headaches...just a > thought. I got a headache immediately today upon doing > my PFTs. Blow, blow, blow usually means a headache for > me, as can coughing (especially in the temples). > Nausea that improves with eating is sometimes a sign of > an ulcer. > I agree that your symptoms sound much like IPF. But it > does seem premature to recommend transplant even > before testing your lung volumes or having a biopsy. > Transplant evaluation is about a 6-day process that > includes a LOT of tests: CTs, MRIs, heart cath, and many > more. Bruce answered your question about VATS. That's > what I had, and I was in the hospital 2 nights and 3 days. > I HAD to know, although I didn't fully realize how much > of a non-answer IPF is - i.e., all the lack of concrete answers, > lack of knowledge about the causes or disease process, > lack of treatment, etc. > > , > I adore your post about this site. You have never even come > close to offending me, and I can't see it ever happening. > Big hugs to you when you're scilly or serious - I'll take you > either way... in fact I need you both ways! > You don't mention the Russians - do you like Rachmaninoff? > I DO. Your page-turning experience is thrilling. I have a > Russian cousin-by-marriage who competed in our prestigious > Van Cliburn International Piano Competition here in Fort > Worth, and then went on to win the Leeds in London. Cool, > huh? I could listen to him play for days on end!!! Ilya Itin > is his name. > > Sher, > Awwwwww- the photos of you and Rosebud are > absolutely heart-warming. I'm glad she gives you > so much comfort. I have to admit my daughter gave me > a stuffed dog that looks very much like my Misha, which > I set on my bed the 3 nights that she was in the hospital. > It actually helped a tiny bit to give it an occasional squeeze. > Misha's going back for a re-check in a week - we've ruled > out some bad things, but we don't have the full story yet. > At least she's doing better. > > Joyce, > Terrific SERMON #!. I'd hate the hospital bed too, but > probably not for long if it led to better, more restful > sleep (yeah, I know, another one of those " acceptance > plateaus " that we experience). That's what I'm hoping > happens right away for you. I don't want you to have to > change docs, but if you have to consult with the new MD, > at least he comes highly qualified. You'll be the perfect > judge of if he's also a good healer and compassionate > person. > You surely have a lot of beautiful grandchildren! Thanks for > the photos of YOU and Lucian especially. Yeay, jammies! > > Peggy, > Wonderful story. I do try to live my life in seasons instead > of by years. It was good advice from my sweet pulmonologist. > > Still depressed here. Ridin' it out as best I can. > > Hugs and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Sher/Gwynne Well, I think even if they weren't before the disease, anyone here is quite logically going to suffer from some depression. I almost think when they tell you that you have such a disease they should say " and now our counselor is in the next room waiting to see you. " And, with the scare she had and Misha, I just want to cry with Gwynne. I was miserable and anxious and depressed when I took Mandi to the vet recently because she was sneezing a lot and the vet started checking and covering possibilities. I know right now if anything happened to her or Marli there's no way I'd avoid serious depression and probably a panic attack. But I just feel that way about pets and actually feel a bit sad for those who have never experienced that loving relationship you can have with a dog or cat. > > > > > > My PFTs were today, but no DLCO (my last was 26%). > > My FEV 1 was 1.56 out of a Predicted 3.06. I walked a > > measly 646 feet on my 6 minute walk (worst ever), my > > sats dropped to 82%, and I finished at 10 liters but could > > have used more. > > My doc took me off the CellCept after 2 years, as we've > > ALL decided it isn't working. The kicker is that (I can > > almost hear the moans and groans) he actually wants > > to increase my Prednisone from 10 to 40 mg. for two > > weeks. He's not insistent, because he knows I have > > too many reservations. Truth is, I haven't decided about > > this yet, although I probably won't do it. Tack on 30 more > > mg to current depression? Probably isn't a great idea. > > > > They finally did get my chart information to San , > > and I have an appointment there Feb. 1. All they're going > > to require of me is an x-ray, blood work, social worker > > consult, and to meet the doctors, thank goodness. > > > > Judy, > > You are warmly welcomed to this group of caring and > > knowledgeable people. I'm sorry you also have IPF > > (me too) - when were you diagnosed? I was also being > > mistreated for asthma. Thank you for the information > > about yourself. Know that you're not alone. > > FYI,we have another Judy who was transplanted recently. > > > > Leanne, > > Amen to " Now Is The Time " . It says it perfectly. Thank you, > > I'll keep this one. > > > > Todd, > > Great photos of the Tetons!! I'm a mountain girl at heart. > > You have a lovely family. I'll bet that trip was a good one. > > Your headaches could also be cluster headaches...just a > > thought. I got a headache immediately today upon doing > > my PFTs. Blow, blow, blow usually means a headache for > > me, as can coughing (especially in the temples). > > Nausea that improves with eating is sometimes a sign of > > an ulcer. > > I agree that your symptoms sound much like IPF. But it > > does seem premature to recommend transplant even > > before testing your lung volumes or having a biopsy. > > Transplant evaluation is about a 6-day process that > > includes a LOT of tests: CTs, MRIs, heart cath, and many > > more. Bruce answered your question about VATS. That's > > what I had, and I was in the hospital 2 nights and 3 days. > > I HAD to know, although I didn't fully realize how much > > of a non-answer IPF is - i.e., all the lack of concrete answers, > > lack of knowledge about the causes or disease process, > > lack of treatment, etc. > > > > , > > I adore your post about this site. You have never even come > > close to offending me, and I can't see it ever happening. > > Big hugs to you when you're scilly or serious - I'll take you > > either way... in fact I need you both ways! > > You don't mention the Russians - do you like Rachmaninoff? > > I DO. Your page-turning experience is thrilling. I have a > > Russian cousin-by-marriage who competed in our prestigious > > Van Cliburn International Piano Competition here in Fort > > Worth, and then went on to win the Leeds in London. Cool, > > huh? I could listen to him play for days on end!!! Ilya Itin > > is his name. > > > > Sher, > > Awwwwww- the photos of you and Rosebud are > > absolutely heart-warming. I'm glad she gives you > > so much comfort. I have to admit my daughter gave me > > a stuffed dog that looks very much like my Misha, which > > I set on my bed the 3 nights that she was in the hospital. > > It actually helped a tiny bit to give it an occasional squeeze. > > Misha's going back for a re-check in a week - we've ruled > > out some bad things, but we don't have the full story yet. > > At least she's doing better. > > > > Joyce, > > Terrific SERMON #!. I'd hate the hospital bed too, but > > probably not for long if it led to better, more restful > > sleep (yeah, I know, another one of those " acceptance > > plateaus " that we experience). That's what I'm hoping > > happens right away for you. I don't want you to have to > > change docs, but if you have to consult with the new MD, > > at least he comes highly qualified. You'll be the perfect > > judge of if he's also a good healer and compassionate > > person. > > You surely have a lot of beautiful grandchildren! Thanks for > > the photos of YOU and Lucian especially. Yeay, jammies! > > > > Peggy, > > Wonderful story. I do try to live my life in seasons instead > > of by years. It was good advice from my sweet pulmonologist. > > > > Still depressed here. Ridin' it out as best I can. > > > > Hugs and blessings, > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 gwenne i hope ou feel better. it is very hard to get out of the depression. you are in my prayers. i am going through a state now. i have been to the dr and she put me on seroquel mae me sllep for two days. i am going back mon. i am boarder line bipolar. sucks when you are trying to get out of this depresion. love and hugs i nsip 2002 Sher Bauman wrote: Gwynne...I totally overlooked sending you a hug concerning the depression. I know all about that stuff! I take Cymbalta every day. It has made a good difference in my life. When we are prone to depression we sometimes don't know what sets it into motion. It sucks anyway. If it helps, you sure "sound good" on the board! Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: PFTs etc. GwynneYour PFT's remind me how dangerous any one indicator can be. I'm early and mine is so mild today compared to yours but yet my FEV1 is actually worse. I still say the mouthpiece was too big for me. lol.If you do the Prednisone please make sure someone who will see you regularly is aware so they'll recognize signs that it is causing too much depression. Wouldn't a try of a smaller increase like to 20 make more sense. I know he's trying to hit hard, but it just seems to me high side effect drugs should be increased gradually, not quadrupled. So glad they aren't putting you through the ringer in San . Thank goodness they actually will trust that the doctors at UTSW knew how to run tests.>> > My PFTs were today, but no DLCO (my last was 26%).> My FEV 1 was 1.56 out of a Predicted 3.06. I walked a> measly 646 feet on my 6 minute walk (worst ever), my> sats dropped to 82%, and I finished at 10 liters but could> have used more.> My doc took me off the CellCept after 2 years, as we've> ALL decided it isn't working. The kicker is that (I can> almost hear the moans and groans) he actually wants> to increase my Prednisone from 10 to 40 mg. for two> weeks. He's not insistent, because he knows I have> too many reservations. Truth is, I haven't decided about> this yet, although I probably won't do it. Tack on 30 more> mg to current depression? Probably isn't a great idea.> > They finally did get my chart information to San ,> and I have an appointment there Feb. 1. All they're going> to require of me is an x-ray, blood work, social worker> consult, and to meet the doctors, thank goodness.> > Judy,> You are warmly welcomed to this group of caring and> knowledgeable people. I'm sorry you also have IPF> (me too) - when were you diagnosed? I was also being> mistreated for asthma. Thank you for the information> about yourself. Know that you're not alone.> FYI,we have another Judy who was transplanted recently.> > Leanne,> Amen to "Now Is The Time". It says it perfectly. Thank you,> I'll keep this one.> > Todd,> Great photos of the Tetons!! I'm a mountain girl at heart.> You have a lovely family. I'll bet that trip was a good one.> Your headaches could also be cluster headaches...just a> thought. I got a headache immediately today upon doing> my PFTs. Blow, blow, blow usually means a headache for> me, as can coughing (especially in the temples).> Nausea that improves with eating is sometimes a sign of> an ulcer.> I agree that your symptoms sound much like IPF. But it> does seem premature to recommend transplant even> before testing your lung volumes or having a biopsy.> Transplant evaluation is about a 6-day process that> includes a LOT of tests: CTs, MRIs, heart cath, and many> more. Bruce answered your question about VATS. That's> what I had, and I was in the hospital 2 nights and 3 days.> I HAD to know, although I didn't fully realize how much> of a non-answer IPF is - i.e., all the lack of concrete answers,> lack of knowledge about the causes or disease process,> lack of treatment, etc.> > ,> I adore your post about this site. You have never even come> close to offending me, and I can't see it ever happening.> Big hugs to you when you're scilly or serious - I'll take you> either way... in fact I need you both ways!> You don't mention the Russians - do you like Rachmaninoff?> I DO. Your page-turning experience is thrilling. I have a> Russian cousin-by-marriage who competed in our prestigious> Van Cliburn International Piano Competition here in Fort> Worth, and then went on to win the Leeds in London. Cool,> huh? I could listen to him play for days on end!!! Ilya Itin> is his name.> > Sher,> Awwwwww- the photos of you and Rosebud are> absolutely heart-warming. I'm glad she gives you> so much comfort. I have to admit my daughter gave me> a stuffed dog that looks very much like my Misha, which> I set on my bed the 3 nights that she was in the hospital.> It actually helped a tiny bit to give it an occasional squeeze.> Misha's going back for a re-check in a week - we've ruled> out some bad things, but we don't have the full story yet.> At least she's doing better.> > Joyce,> Terrific SERMON #!. I'd hate the hospital bed too, but> probably not for long if it led to better, more restful> sleep (yeah, I know, another one of those "acceptance> plateaus" that we experience). That's what I'm hoping> happens right away for you. I don't want you to have to> change docs, but if you have to consult with the new MD,> at least he comes highly qualified. You'll be the perfect> judge of if he's also a good healer and compassionate> person.> You surely have a lot of beautiful grandchildren! Thanks for> the photos of YOU and Lucian especially. Yeay, jammies!> > Peggy,> Wonderful story. I do try to live my life in seasons instead> of by years. It was good advice from my sweet pulmonologist.> > Still depressed here. Ridin' it out as best I can.> > Hugs and blessings,> Gwynne IPF 7/04 listed for transplant 3/07 Texas> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Thinking of you as well. I tried Seroquel sometime along the way. Can't remember exactly what my problem with it was. At some point you lose track. Just recognize your mental state is in many ways more critical than your physical and whether its meds or counseling or whatever, don't hesitate to get the help. Unfortunately, I've been determined to be medication resistant. Fortunately, after a long time, I was determined to not be counseling resistant. > > > > > > My PFTs were today, but no DLCO (my last was 26%). > > My FEV 1 was 1.56 out of a Predicted 3.06. I walked a > > measly 646 feet on my 6 minute walk (worst ever), my > > sats dropped to 82%, and I finished at 10 liters but could > > have used more. > > My doc took me off the CellCept after 2 years, as we've > > ALL decided it isn't working. The kicker is that (I can > > almost hear the moans and groans) he actually wants > > to increase my Prednisone from 10 to 40 mg. for two > > weeks. He's not insistent, because he knows I have > > too many reservations. Truth is, I haven't decided about > > this yet, although I probably won't do it. Tack on 30 more > > mg to current depression? Probably isn't a great idea. > > > > They finally did get my chart information to San , > > and I have an appointment there Feb. 1. All they're going > > to require of me is an x-ray, blood work, social worker > > consult, and to meet the doctors, thank goodness. > > > > Judy, > > You are warmly welcomed to this group of caring and > > knowledgeable people. I'm sorry you also have IPF > > (me too) - when were you diagnosed? I was also being > > mistreated for asthma. Thank you for the information > > about yourself. Know that you're not alone. > > FYI,we have another Judy who was transplanted recently. > > > > Leanne, > > Amen to " Now Is The Time " . It says it perfectly. Thank you, > > I'll keep this one. > > > > Todd, > > Great photos of the Tetons!! I'm a mountain girl at heart. > > You have a lovely family. I'll bet that trip was a good one. > > Your headaches could also be cluster headaches...just a > > thought. I got a headache immediately today upon doing > > my PFTs. Blow, blow, blow usually means a headache for > > me, as can coughing (especially in the temples). > > Nausea that improves with eating is sometimes a sign of > > an ulcer. > > I agree that your symptoms sound much like IPF. But it > > does seem premature to recommend transplant even > > before testing your lung volumes or having a biopsy. > > Transplant evaluation is about a 6-day process that > > includes a LOT of tests: CTs, MRIs, heart cath, and many > > more. Bruce answered your question about VATS. That's > > what I had, and I was in the hospital 2 nights and 3 days. > > I HAD to know, although I didn't fully realize how much > > of a non-answer IPF is - i.e., all the lack of concrete answers, > > lack of knowledge about the causes or disease process, > > lack of treatment, etc. > > > > , > > I adore your post about this site. You have never even come > > close to offending me, and I can't see it ever happening. > > Big hugs to you when you're scilly or serious - I'll take you > > either way... in fact I need you both ways! > > You don't mention the Russians - do you like Rachmaninoff? > > I DO. Your page-turning experience is thrilling. I have a > > Russian cousin-by-marriage who competed in our prestigious > > Van Cliburn International Piano Competition here in Fort > > Worth, and then went on to win the Leeds in London. Cool, > > huh? I could listen to him play for days on end!!! Ilya Itin > > is his name. > > > > Sher, > > Awwwwww- the photos of you and Rosebud are > > absolutely heart-warming. I'm glad she gives you > > so much comfort. I have to admit my daughter gave me > > a stuffed dog that looks very much like my Misha, which > > I set on my bed the 3 nights that she was in the hospital. > > It actually helped a tiny bit to give it an occasional squeeze. > > Misha's going back for a re-check in a week - we've ruled > > out some bad things, but we don't have the full story yet. > > At least she's doing better. > > > > Joyce, > > Terrific SERMON #!. I'd hate the hospital bed too, but > > probably not for long if it led to better, more restful > > sleep (yeah, I know, another one of those " acceptance > > plateaus " that we experience). That's what I'm hoping > > happens right away for you. I don't want you to have to > > change docs, but if you have to consult with the new MD, > > at least he comes highly qualified. You'll be the perfect > > judge of if he's also a good healer and compassionate > > person. > > You surely have a lot of beautiful grandchildren! Thanks for > > the photos of YOU and Lucian especially. Yeay, jammies! > > > > Peggy, > > Wonderful story. I do try to live my life in seasons instead > > of by years. It was good advice from my sweet pulmonologist. > > > > Still depressed here. Ridin' it out as best I can. > > > > Hugs and blessings, > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Our Lola knows she is safe here and with us. She does like people but often will look to me as though to say, "Is this ok mom?" Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! PFTs etc.> > > > My PFTs were today, but no DLCO (my last was 26%).> My FEV 1 was 1.56 out of a Predicted 3.06. I walked a> measly 646 feet on my 6 minute walk (worst ever), my> sats dropped to 82%, and I finished at 10 liters but could> have used more.> My doc took me off the CellCept after 2 years, as we've> ALL decided it isn't working. The kicker is that (I can> almost hear the moans and groans) he actually wants> to increase my Prednisone from 10 to 40 mg. for two> weeks. He's not insistent, because he knows I have> too many reservations. Truth is, I haven't decided about> this yet, although I probably won't do it. Tack on 30 more> mg to current depression? Probably isn't a great idea.> > They finally did get my chart information to San ,> and I have an appointment there Feb. 1. All they're going> to require of me is an x-ray, blood work, social worker> consult, and to meet the doctors, thank goodness.> > Judy,> You are warmly welcomed to this group of caring and> knowledgeable people. I'm sorry you also have IPF> (me too) - when were you diagnosed? I was also being> mistreated for asthma. Thank you for the information> about yourself. Know that you're not alone.> FYI,we have another Judy who was transplanted recently.> > Leanne,> Amen to "Now Is The Time". It says it perfectly. Thank you,> I'll keep this one.> > Todd,> Great photos of the Tetons!! I'm a mountain girl at heart.> You have a lovely family. I'll bet that trip was a good one.> Your headaches could also be cluster headaches...just a> thought. I got a headache immediately today upon doing> my PFTs. Blow, blow, blow usually means a headache for> me, as can coughing (especially in the temples).> Nausea that improves with eating is sometimes a sign of> an ulcer.> I agree that your symptoms sound much like IPF. But it> does seem premature to recommend transplant even> before testing your lung volumes or having a biopsy.> Transplant evaluation is about a 6-day process that> includes a LOT of tests: CTs, MRIs, heart cath, and many> more. Bruce answered your question about VATS. That's> what I had, and I was in the hospital 2 nights and 3 days.> I HAD to know, although I didn't fully realize how much> of a non-answer IPF is - i.e., all the lack of concrete answers,> lack of knowledge about the causes or disease process,> lack of treatment, etc.> > ,> I adore your post about this site. You have never even come> close to offending me, and I can't see it ever happening.> Big hugs to you when you're scilly or serious - I'll take you> either way... in fact I need you both ways!> You don't mention the Russians - do you like Rachmaninoff?> I DO. Your page-turning experience is thrilling. I have a> Russian cousin-by-marriage who competed in our prestigious> Van Cliburn International Piano Competition here in Fort> Worth, and then went on to win the Leeds in London. Cool,> huh? I could listen to him play for days on end!!! Ilya Itin> is his name.> > Sher,> Awwwwww- the photos of you and Rosebud are> absolutely heart-warming. I'm glad she gives you> so much comfort. I have to admit my daughter gave me> a stuffed dog that looks very much like my Misha, which> I set on my bed the 3 nights that she was in the hospital.> It actually helped a tiny bit to give it an occasional squeeze.> Misha's going back for a re-check in a week - we've ruled> out some bad things, but we don't have the full story yet.> At least she's doing better.> > Joyce,> Terrific SERMON #!. I'd hate the hospital bed too, but> probably not for long if it led to better, more restful> sleep (yeah, I know, another one of those "acceptance> plateaus" that we experience). That's what I'm hoping> happens right away for you. I don't want you to have to> change docs, but if you have to consult with the new MD,> at least he comes highly qualified. You'll be the perfect> judge of if he's also a good healer and compassionate> person.> You surely have a lot of beautiful grandchildren! Thanks for> the photos of YOU and Lucian especially. Yeay, jammies!> > Peggy,> Wonderful story. I do try to live my life in seasons instead> of by years. It was good advice from my sweet pulmonologist.> > Still depressed here. Ridin' it out as best I can.> > Hugs and blessings,> Gwynne IPF 7/04 listed for transplant 3/07 Texas> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.