Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Hi Deb, I live in Dayton. We get up to Cleveland once a year to see my husband's aunt and uncle. Well, since I have never felt full, I guess that has helped me eat fast, since nothing seems to bother me. But, I will try to slow my eating down. I do not drink when I eat, and I wait at least 1/2 hour after I have eaten to drink, so I am really trying. I am going to up my shakes to 3 a day, that will give me 90 g of protein, but I need to up it so I can hopefully jumpstart my weight loss. Thanks so much for writing, I sometimes feel alone in my battle. Take care, Debbi in Dayton -- Re: RE: Questions Debbi, You want to eat slowly to give your pouch the satiety feeling. It takes almost 20 mins for that to kick in. Nice slow bites, no water with meals. 30 mins before and 30 mins after. Even tho I just started to eat after 11 weeks. I stop before I get that full feeling. I took someone's recommendation to eat with a baby spoon. I just need a plate warmer cos my food gets cold before I'm half way done. LOL Are you doing protein shakes. increase those to over 60 grams and see what that does. I think some of the hints folks give is to use less water to mix it in. I know others do it before they eat 30 mins. before......... Deb in cleveland. Where in Ohio do you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 Hi Robyn- You are one of the lucky ones I guess? You are exhausted because your heart is not pumping efficiently. To me it felt like popcorn was popping in my chest. My heart rhythm had no rhyme or reason, it would speed up and slow down. You are going to one of the best clinics ever:) You will be in good hands. Marna questions > how do you know you are in a fib? they tell me i am in constant afib but > i > dont feel it.i do feel exhausted,and every once in awhile i feel like my > heart > is being squeezed.i have an app at cleveland clinic on nov 2 nd with > james b > young,they say he is the best but i have no idea about these people.any > help > would be appreciated > robyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I don't have the liver problems but I do have the other problems that you metioned..... of course I have had my gallbladder removed and I have the chrons disease now too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I am in the process of being diagnosed with celiac. My mother had it and I have a ton of symptoms. I have some questions though. I have rcently been diagnosed type 1 diabetic. Are any of you type 1? How do you, or do you adjust your insulin for the increase in carbs since celiacs use more carb flours? My other question is that my biopsy is scheduled for the 16th and 3 days ago found out that I am pregnant. I am scared not the have the biopsy because I've been so sick and need the celiac diagnosis to figure out what is going on with me. How will all of this affect each other????? Tara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I am not diabetic. But my blood sugar does fluctuate alot. Go figure... On the pregnancy thing since they do give you anesthiesia for the biopsy I would strongly suggest you call your doctor and notify him. They might go ahead and do the biopsy. I have met some ladies on another board that said they found out after they had thier children and there were problems with the pregnancies that could have been prevented ahead of time. Please call your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Beth: I live in Waynesville, NC - just the other side of Asheville. Two hours or so away from Duke. I haven't had a six-minute walk test (I don't think!) and I don't know about my oxygen levels. So I guess I'll need to check with my pulmonologist about that. That's what's so good about this site - it educates the ignorant (like me.....) Thanks. ;-) Beth wrote: Hi Barbara, What I referred to was "sats" (not stats) and that is a shorthand way of saying Oxygen saturations. That refers to the level of oxygen in our bloodstream at any given time. Normal O2 sats are in the high 90's, 97-99. Anything below about 90 leads to organ damage. When the oxygen level in our bloodstream falls below 90 for more than a few minutes ( and by few I mean 4 or 5 at the most) cells begin to die, brain cells, liver cells, kidney cells, heart cells, muscle cells. Low oxygen levels can cause a heart attack. Keeping our sats at more normal levels is how we protect the rest of our bodies from the effects of this disease. You don't mention whether you've had a 6 minute walk or any other test of your O2 levels. If you have not it would be a good thing to request. Where are you located? I live in Durham NC about 10 minutes from Duke University Medical Center. I moved here specifically to be close to Duke which has an excellent interstitial lung disease department. It might be worthwhile to look into being evaluated at a university medical center as they have access to the most up to date information on our disease. Please let us know if you have any questions at all. We've all been in your position and we're happy to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, October 25, 2008 10:35:33 AMSubject: Re: Re: questions Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara, I know where Waynesville is! The Blue Ridge Parkway goes through that area, I think a little south of where you are, right? My son lives up in Boone so I'm familiar with alot of western NC. It is gorgeous! I'm glad I was able to help and I agree these are questions you should definitely ask your pulmonologist. If you ever decide to pay a visit to Duke let me know, I'd love to meet you! Just so that you know, you can be evaluated at Duke and then have your local doctor implement whatever treatment plan they prescribe. That's what I did when I lived in NY. I saw a doctor at NY's Columbia Pres and my local pulmonologist implemented the plan Dr Simonelli prescribed. That saved me from making constant trips into the city to be seen by Dr. Simonelli. I was monitored locally and only had to make that trek every 3 or 4 months. I'm happy to be able to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 11:45:49 AMSubject: Re: Re: questions Beth: I live in Waynesville, NC - just the other side of Asheville. Two hours or so away from Duke. I haven't had a six-minute walk test (I don't think!) and I don't know about my oxygen levels. So I guess I'll need to check with my pulmonologist about that. That's what's so good about this site - it educates the ignorant (like me.....) Thanks. ;-) Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Hi Barbara, What I referred to was "sats" (not stats) and that is a shorthand way of saying Oxygen saturations. That refers to the level of oxygen in our bloodstream at any given time. Normal O2 sats are in the high 90's, 97-99. Anything below about 90 leads to organ damage. When the oxygen level in our bloodstream falls below 90 for more than a few minutes ( and by few I mean 4 or 5 at the most) cells begin to die, brain cells, liver cells, kidney cells, heart cells, muscle cells. Low oxygen levels can cause a heart attack. Keeping our sats at more normal levels is how we protect the rest of our bodies from the effects of this disease. You don't mention whether you've had a 6 minute walk or any other test of your O2 levels. If you have not it would be a good thing to request. Where are you located? I live in Durham NC about 10 minutes from Duke University Medical Center. I moved here specifically to be close to Duke which has an excellent interstitial lung disease department. It might be worthwhile to look into being evaluated at a university medical center as they have access to the most up to date information on our disease. Please let us know if you have any questions at all. We've all been in your position and we're happy to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 10:35:33 AMSubject: Re: Re: questions Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara ... I want to welcome you to our board and it won't take long until you know you are in the right place. When I was first dx I too had only coughing and wheezing. Soon came sob and I now need O2 during the night (because my blood O2 levels drop too low) and with exertion...actually, with just about any 'prolonged motion' even. I personally think it's nearly impossible to give one answer for all. We are so different in our disease and how/when it progresses. Tiredness certainly could be depression, which I live with and take meds for. Most of us here do take anti-depressants. Anyone with a life threatening illness also lives with depression...just in different stages/degrees/effects/treatments. Do be sure to see a good pulmonologist and have the Pulmonary Function Tests (PFTs) he will recommend. Write down questions to take to him and ask everyone! Become your own best advocate. You will learn a lot here Diane. As we gain information about ourselves then we know what decisions to make. Keep on keepin' on! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara.. whooops. I called you "Diane"...sorry. Temporarily got the newbies mixed up. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Beth I used to live in NY. Born and raised in Queens, lived in Manhattan most of my adult life, until I met Mike (from Santa Fe) on the internet, and we married and moved to Rockland County in 1996. Been here in Waynesville since October 2001, and love, love, love it! Boone is beautiful - almost as nice as Waynesville ;-). I haven't been to Durham yet, but if I do - I will definitely get in touch. B Beth wrote: Barbara, I know where Waynesville is! The Blue Ridge Parkway goes through that area, I think a little south of where you are, right? My son lives up in Boone so I'm familiar with alot of western NC. It is gorgeous! I'm glad I was able to help and I agree these are questions you should definitely ask your pulmonologist. If you ever decide to pay a visit to Duke let me know, I'd love to meet you! Just so that you know, you can be evaluated at Duke and then have your local doctor implement whatever treatment plan they prescribe. That's what I did when I lived in NY. I saw a doctor at NY's Columbia Pres and my local pulmonologist implemented the plan Dr Simonelli prescribed. That saved me from making constant trips into the city to be seen by Dr. Simonelli. I was monitored locally and only had to make that trek every 3 or 4 months. I'm happy to be able to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, October 25, 2008 11:45:49 AMSubject: Re: Re: questions Beth: I live in Waynesville, NC - just the other side of Asheville. Two hours or so away from Duke. I haven't had a six-minute walk test (I don't think!) and I don't know about my oxygen levels. So I guess I'll need to check with my pulmonologist about that. That's what's so good about this site - it educates the ignorant (like me.....) Thanks. ;-) Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Hi Barbara, What I referred to was "sats" (not stats) and that is a shorthand way of saying Oxygen saturations. That refers to the level of oxygen in our bloodstream at any given time. Normal O2 sats are in the high 90's, 97-99. Anything below about 90 leads to organ damage. When the oxygen level in our bloodstream falls below 90 for more than a few minutes ( and by few I mean 4 or 5 at the most) cells begin to die, brain cells, liver cells, kidney cells, heart cells, muscle cells. Low oxygen levels can cause a heart attack. Keeping our sats at more normal levels is how we protect the rest of our bodies from the effects of this disease. You don't mention whether you've had a 6 minute walk or any other test of your O2 levels. If you have not it would be a good thing to request. Where are you located? I live in Durham NC about 10 minutes from Duke University Medical Center. I moved here specifically to be close to Duke which has an excellent interstitial lung disease department. It might be worthwhile to look into being evaluated at a university medical center as they have access to the most up to date information on our disease. Please let us know if you have any questions at all. We've all been in your position and we're happy to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 10:35:33 AMSubject: Re: Re: questions Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Sher.. Thanks for the words of welcome. Having the ability to question good, "been there" people who will answer honestly (and with kindness!) is a great comfort. I actually am feeling pretty peaceful about the whole thing. I'm not sure if it's the power of prayer that is having that effect, but I think it is. By no means am I giving up, or putting my head in the sand, but I have a strong faith and rest in that faith. B Sher Bauman wrote: Barbara ... I want to welcome you to our board and it won't take long until you know you are in the right place. When I was first dx I too had only coughing and wheezing. Soon came sob and I now need O2 during the night (because my blood O2 levels drop too low) and with exertion...actually, with just about any 'prolonged motion' even. I personally think it's nearly impossible to give one answer for all. We are so different in our disease and how/when it progresses. Tiredness certainly could be depression, which I live with and take meds for. Most of us here do take anti-depressants. Anyone with a life threatening illness also lives with depression...just in different stages/degrees/effects/treatments. Do be sure to see a good pulmonologist and have the Pulmonary Function Tests (PFTs) he will recommend. Write down questions to take to him and ask everyone! Become your own best advocate. You will learn a lot here Diane. As we gain information about ourselves then we know what decisions to make. Keep on keepin' on! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! ----- Original Message ----- From: Barbara McD To: Breathe-Support Sent: Saturday, October 25, 2008 6:25 AM Subject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara ... once again, the majority of us have deep faiths, although different. Never be afraid to express your faith. (Although we try not to "preach" lol). Your writing shows a good attitude. Somedays mine is up and some days not so. I think age plays a part too. I'm recently 70 and one of the older ones here so I "mother hen" everyone. lol MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara, I'd like to add my Welcome to the others. You have landed in the right place. We all "get it" Regardless of what type of PF and what stage of the disease, we've got someone here to understand your concerns and answer your questions. I was DX'd 3+ years ago and still chugging away. Yes there are "down" days. There are PJ days when I don't even answer the phone because talking can really wipe me out. And then there are days with my baby grand daughters or friends or my pottery workshop too. I just have to pace myself. Sometimes it's one day "on" and then one day "off". Indulgence is a good thing...take care of yourself..pamper yourself. Save your energy for positive people and positive activity. Don't waste your time with people or situations that are negative. Just my tips for today. Welcome again. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Barbara McD wrote: I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think? Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. Nasturtiums Don't fret about tomorrow, God is already there! ----- Original Message ----- From: markjacobyphoto To: Breathe-Support Sent: Friday, October 24, 2008 12:21 PM Subject: Re: questions > > Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane > Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower! I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know. Mark pf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.8.3/1744 - Release Date: 10/24/2008 6:08 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Thanks for the welcome, . I'm looking forward to getting to know all y'all. B Zion wrote: Barbara, I'd like to add my Welcome to the others.You have landed in the right place. We all "get it"Regardless of what type of PF and what stage of the disease, we've got someone here tounderstand your concerns and answer your questions.I was DX'd 3+ years ago and still chugging away. Yes there are "down" days.There are PJ days when I don't even answer the phone because talkingcan really wipe me out. And then there are days with my baby grand daughters or friendsor my pottery workshop too. I just have to pace myself. Sometimes it's one day "on" and then one day "off".Indulgence is a good thing...take care of yourself..pamper yourself. Save your energyfor positive people and positive activity. Don't waste your time with people or situations that are negative.Just my tips for today.Welcome again. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Barbara McD wrote: I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.8.3/1744 - Release Date: 10/24/2008 6:08 PM Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
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