Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Donna sorry to read about your visit to the "big house" i deal with the fatigue by taking naps some people in this group recommend limiting activity to 15 minutes and then a rest break for several months now, after using the treadmill, i need to sit and rest prior to doing the rest of the exercises at the Wellness Center as for the depression -- lots of people take anti depressants -- i think you stated that you are already on zoloft dealing with this disease has added to the depression keeping busy, seeing a therapist, belonging to support groups like this one on line are some of the things that help, continue to do the things you enjoy doing, or try doing new things that you are able to do every individual has different needs and different ways of coping with illness Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: PF and DepressionTo: Breathe-Support Date: Monday, November 2, 2009, 9:38 PM I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache, extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression?Wishing All a good night.Donna(Iowa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Donna One word for me-COUNSELING. It's saved my life in more ways than I can express. My counselor does far more for me than my pulmonologist, rheumatologist, primary, neurologist, pulmonary hypertension doctor, gastroenterologist, nephrologist, and all the others combined. We have a right to depression and anxiety and its just natural to need some help in dealing with them. I think everyone suffering from either needs some counseling and I think anyone with PF who never has any depression or anxiety needs counseling even more because I can't imagine that. Counseling is all about coping skills. The best family, the best friends in the world, even the most faith, can't always do what a professional mental health counselor can. Meds are a small part of controlling the moods we'll experience. Please no one hesitate to get assistance. > > I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache,extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. > > How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression? > > Wishing All a good night. > Donna > (Iowa) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Hi Donna I am glad to hear you are getting a sleep study. My CPAP is best sleep buddy. Your home health agency will be able to bleed oxygen into the CPAP if they determine one is necessary. We are pretty good listeners about depression and bad days. We've all been there and will go there again. Diseases like ours are a lot to comprehend and deal with and it takes some time. Cry or scream or pout or whatever you need to do but Bruce is absolutely right. It helps to have professional help and meds won't do it all sometimes. And if you have a crappy day, it is just a crappy day. So say it is a crappy day and look forward to the next day. The sun is going to come up right on schedule. Even in Iowa. I saw sunset one time at the Rosemond Bridge in Madison County. Highly recommended if possible. S, Lubbock, TX NSIP w/PF 12/2006 > > > > I have been so overwhelmed since my 6 day hospital stay and being sent > home with oxygen. This was the first time I have ever been sent home > with oxygen. I am on it 24/7 because my oxygen level drops quite low and > quite fast Before all this I was already on an antidepressant (Zoloft). > I also have more anxiety and my Dr has given me meds to use for that! > Today has just been a bad day. I am breathing alright just alot of > coughing,headache,extremely fatigued (took a few naps today)and just > achey! Im not sleeping well at night and this month I have a sleep > study. I see my Pulmonologist Next Monday for the first time Nov 9.My > coping skills seem to have went out the window today. It was hard to > stay in just today. Trying to look at the whole picture is very > overwhelming! I had a hard cry today and that seemed to help some. > > > > How do you all deal with the fatigue and do any of you suffer badly > with it? How do you deal with the depression? > > > > Wishing All a good night. > > Donna > > (Iowa) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Bruce I agree with you 100% I am one that truly believes in counseling/therapy and group therapy as well.For 19 years I attended a 12 step group and had 8+ years of one on one counseling and group therapy. The group therapy took a while to get use to but it was Very good for me! When I began counseling I remember them telling me "We Cant Fix You" But.."The more your willing to put into it ,the more you will get out of it". So I took that seriously and worked my hiney off! LOL! It did pay off handsomely! (smiles) But then something like PF happens and it can literally shake your world and all the coping skills you once had.Now it is time for me to go back to counseling because I truly need the support right now. Thank you for the reminder. I also agree that medication can be an important part but not the only part.Thank you Bruce for reminding me of counseling! My plan is to make an appointment hopefully once this swine flu slows down some. I am staying in trying not to come in contact with it as we like other states have run out of the H1N1 shots.Donna White(Iowa)To: Breathe-Support Sent: Mon, November 2, 2009 9:58:30 PMSubject: Re: PF and Depression Donna One word for me-COUNSELING. It's saved my life in more ways than I can express. My counselor does far more for me than my pulmonologist, rheumatologist, primary, neurologist, pulmonary hypertension doctor, gastroenterologist, nephrologist, and all the others combined. We have a right to depression and anxiety and its just natural to need some help in dealing with them. I think everyone suffering from either needs some counseling and I think anyone with PF who never has any depression or anxiety needs counseling even more because I can't imagine that. Counseling is all about coping skills. The best family, the best friends in the world, even the most faith, can't always do what a professional mental health counselor can. Meds are a small part of controlling the moods we'll experience. Please no one hesitate to get assistance. > > I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache, extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. > > How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression? > > Wishing All a good night. > Donna > (Iowa) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Donna I'd go on and make the appointment. Normally counselors are fairly safe flu wise (unless they have huge crowded waiting rooms), especially if they don't do a lot of kids. In fact thats an appointment one with flu normally cancels. Also, my counselor is aware if she's sick to cancel with me. Glad your previous experience was good and so know that it will be positive for you again. > > > > I have been so overwhelmed since my 6 day hospital stay and being sent > home with oxygen. This was the first time I have ever been sent home > with oxygen. I am on it 24/7 because my oxygen level drops quite low and > quite fast Before all this I was already on an antidepressant (Zoloft). > I also have more anxiety and my Dr has given me meds to use for that! > Today has just been a bad day. I am breathing alright just alot of > coughing,headache, extremely fatigued (took a few naps today)and just > achey! Im not sleeping well at night and this month I have a sleep > study. I see my Pulmonologist Next Monday for the first time Nov 9.My > coping skills seem to have went out the window today. It was hard to > stay in just today. Trying to look at the whole picture is very > overwhelming! I had a hard cry today and that seemed to help some. > > > > How do you all deal with the fatigue and do any of you suffer badly > with it? How do you deal with the depression? > > > > Wishing All a good night. > > Donna > > (Iowa) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Bruce,Thank you again!DonnaTo: Breathe-Support Sent: Tue, November 3, 2009 7:36:13 AMSubject: Re: PF and Depression Donna I'd go on and make the appointment. Normally counselors are fairly safe flu wise (unless they have huge crowded waiting rooms), especially if they don't do a lot of kids. In fact thats an appointment one with flu normally cancels. Also, my counselor is aware if she's sick to cancel with me. Glad your previous experience was good and so know that it will be positive for you again. > > > > I have been so overwhelmed since my 6 day hospital stay and being sent > home with oxygen. This was the first time I have ever been sent home > with oxygen. I am on it 24/7 because my oxygen level drops quite low and > quite fast Before all this I was already on an antidepressant (Zoloft). > I also have more anxiety and my Dr has given me meds to use for that! > Today has just been a bad day. I am breathing alright just alot of > coughing,headache, extremely fatigued (took a few naps today)and just > achey! Im not sleeping well at night and this month I have a sleep > study. I see my Pulmonologist Next Monday for the first time Nov 9.My > coping skills seem to have went out the window today. It was hard to > stay in just today. Trying to look at the whole picture is very > overwhelming! I had a hard cry today and that seemed to help some. > > > > How do you all deal with the fatigue and do any of you suffer badly > with it? How do you deal with the depression? > > > > Wishing All a good night. > > Donna > > (Iowa) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Dona: We know the feeling. Depression is quite common with IPF – it’s only natural. We have roughly 20 patients in our support group and we have all had it in various amounts and at various times. One fellow rarely leaves his house and his sister comes to our meetings to learn all she can. We have had two psychologists as guest speakers. What we have learned is to try to stay positive, try to “keep on keeping on” with the normal things you usually do, stay active, talk it out with someone and seek professional help if necessary. Try to join a support group. If one is not nearby then start one as we did last year. You will be surprised how many IPF patients there are in your town. Ask your pulmonologist about it. They will usually know where the nearest support group is located. Believe me. It really helps. Also so, be sure to deal in facts and not from fear. Yes, we have a serious disease and we can’t deny it. But it is not the end of the world. We have found that some doctors have a poor bedside manner – or they just do not have time to explain all the facts to the new IPF patient. This is one reason why a support group is so helpful. We have had two pulmonologists as guests at our meetings. Both have commented that they learned much from talking with us. We always try to dispel some of the misconceptions that are out there. For example, you might have been told that you have but 3 to 4 years to live. One doctor even told a patient to “go home and get his affairs in order”. That is pure bunk. NO DOCTOR CAN PREDICT WHEN A NEWLY DIAGNOSED IPF PATIENT WILL DIE. The statistic that is quoted of 3.6 years from diagnosis to death is THE “MEAN” TIME. That means that one half of the patients die within 3.6 years. BUT THE OTHER HALF LIVE LONGER – OFTEN MUCH LONGER. We have a new member of our group that was diagnosed 20 years ago. And all of this data was collected when there was no treatment available. But things are changing – and fast. One new drug has showed promise and has been submitted to the FDC for approval. Another has showed a 68% improvement in phase two trials and is now nearing completion of a phase three trial. (I am in the study.) A third drug in the same family is now enrolling patients in a phase three study. Ask your pulmonologist about joining the Letaris study. Very little is known about IPF. Is there a genetic component? An autoimmune component? Why do some people live a very long time? We simply do not know yet but the knowledge base is growing fast. Chances are excellent that we will soon have an effective drug on the market. So stay positive, Dona. The initial shock will pass. You will get over it and decide to fight this disease. And chances are very good that you will do well for a number of years. If you have no one else to turn to, call me on . Regards, Jack McVickers, sdale From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of simply-irresistible Sent: Monday, November 02, 2009 7:39 PM To: Breathe-Support Subject: PF and Depression I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache,extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression? Wishing All a good night. Donna (Iowa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Donna, Sorry to hear that you are home from the hospital with oxygen. It is hard NOT to feel overwhelmed as I know you do. I have been on oxygen 24/7 for 5 years and I am able to function and go places, etc. I do many things. Donna, take this time in your life to start feeling better after you were sick in the hospital. When you get over what ever you were in the hospital for, you will feel better, even with oxygen. Get plenty of rest, relax, etc. The oxygen will help you to feel better so your body doesn't have to work as hard. All of us here have anixiety when it comes to breathing. You will learn to deal with it and life will get better for you. Good luck at the pulmo appointment next week. Let us know what the pulmo-dude says. Remember: Relax, Nap, etc. Come back on the board and tell us more about yourself. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache,extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. > > How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression?> > Wishing All a good night.> Donna> (Iowa)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Donna, Jane said it perfectly, much better than I could have. I've been on O2 24/7 for over 3 and a half years and it allows me to continue to do things that I want to do, things I'd have no chance of doing without supplemental oxygen. Life is not over, merely different. Look after yourself, that's the single most important thing you can do! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, November 3, 2009 10:58:57 AMSubject: Re: PF and Depression Donna, Sorry to hear that you are home from the hospital with oxygen. It is hard NOT to feel overwhelmed as I know you do. I have been on oxygen 24/7 for 5 years and I am able to function and go places, etc. I do many things. Donna, take this time in your life to start feeling better after you were sick in the hospital. When you get over what ever you were in the hospital for, you will feel better, even with oxygen. Get plenty of rest, relax, etc. The oxygen will help you to feel better so your body doesn't have to work as hard. All of us here have anixiety when it comes to breathing. You will learn to deal with it and life will get better for you. Good luck at the pulmo appointment next week. Let us know what the pulmo-dude says. Remember: Relax, Nap, etc. Come back on the board and tell us more about yourself. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache, extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. > > How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression?> > Wishing All a good night.> Donna> (Iowa)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Bruce, Great advise.... Counseling is wonderful. I had individual counseling, and many times its a life saver but, good counseling is a art, and there are as many bad counselors as there are bad artists. Sometimes you have to go through a few before you find a "fit". I have learned more about life, found much about life, how to live in my own skin and truly enjoy all that life offers as well as many communication skills that has helped in my marriage of 31 years as well as life in general. Its not easy and doesn't happen overnight but is well worth the effort. Subject: Re: Re: PF and DepressionTo: Breathe-Support Date: Tuesday, November 3, 2009, 4:13 AM Bruce I agree with you 100% I am one that truly believes in counseling/therapy and group therapy as well.For 19 years I attended a 12 step group and had 8+ years of one on one counseling and group therapy. The group therapy took a while to get use to but it was Very good for me! When I began counseling I remember them telling me "We Cant Fix You" But.."The more your willing to put into it ,the more you will get out of it". So I took that seriously and worked my hiney off! LOL! It did pay off handsomely! (smiles) But then something like PF happens and it can literally shake your world and all the coping skills you once had.Now it is time for me to go back to counseling because I truly need the support right now. Thank you for the reminder. I also agree that medication can be an important part but not the only part.Thank you Bruce for reminding me of counseling! My plan is to make an appointment hopefully once this swine flu slows down some. I am staying in trying not to come in contact with it as we like other states have run out of the H1N1 shots.Donna White(Iowa) From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 2, 2009 9:58:30 PMSubject: Re: PF and Depression DonnaOne word for me-COUNSELING.It's saved my life in more ways than I can express. My counselor doesfar more for me than my pulmonologist, rheumatologist, primary,neurologist, pulmonary hypertension doctor, gastroenterologist,nephrologist, and all the others combined. We have a right to depressionand anxiety and its just natural to need some help in dealing with them.I think everyone suffering from either needs some counseling and I thinkanyone with PF who never has any depression or anxiety needs counselingeven more because I can't imagine that. Counseling is all about copingskills. The best family, the best friends in the world, even the mostfaith, can't always do what a professional mental health counselor can.Meds are a small part of controlling the moods we'll experience. Pleaseno one hesitate to get assistance.>> I have been so overwhelmed since my 6 day hospital stay and being senthome with oxygen. This was the first time I have ever been sent homewith oxygen. I am on it 24/7 because my oxygen level drops quite low andquite fast Before all this I was already on an antidepressant (Zoloft).I also have more anxiety and my Dr has given me meds to use for that!Today has just been a bad day. I am breathing alright just alot ofcoughing,headache, extremely fatigued (took a few naps today)and justachey! Im not sleeping well at night and this month I have a sleepstudy. I see my Pulmonologist Next Monday for the first time Nov 9.Mycoping skills seem to have went out the window today. It was hard tostay in just today. Trying to look at the whole picture is veryoverwhelming! I had a hard cry today and that seemed to help some.>> How do you all deal with the fatigue and do any of you suffer badlywith it? How do you deal with the depression?>> Wishing All a good night.> Donna> (Iowa)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Jack ...Thank you so very much and for all the interesting information! Thank you for your phone number as well. I would also like to take the time to thank everyone for their feedback and the experiences you shared with me.Jack- As you said about the "Initial Shock" wearing off. Yes that is exactly it! I am still in the shock phase and then I dip into some depression and then I am in shock again! (Sounds like the grief process). Thank you Jack you said a lot of things to help as did everyone.DonnaTo: Breathe-Support Sent: Tue, November 3, 2009 9:07:39 AMSubject: RE: PF and Depression Dona: We know the feeling. Depression is quite common with IPF – it’s only natural. We have roughly 20 patients in our support group and we have all had it in various amounts and at various times. One fellow rarely leaves his house and his sister comes to our meetings to learn all she can. We have had two psychologists as guest speakers. What we have learned is to try to stay positive, try to “keep on keeping on†with the normal things you usually do, stay active, talk it out with someone and seek professional help if necessary. Try to join a support group. If one is not nearby then start one as we did last year. You will be surprised how many IPF patients there are in your town. Ask your pulmonologist about it. They will usually know where the nearest support group is located. Believe me. It really helps. Also so, be sure to deal in facts and not from fear. Yes, we have a serious disease and we can’t deny it. But it is not the end of the world. We have found that some doctors have a poor bedside manner – or they just do not have time to explain all the facts to the new IPF patient. This is one reason why a support group is so helpful. We have had two pulmonologists as guests at our meetings. Both have commented that they learned much from talking with us. We always try to dispel some of the misconceptions that are out there. For example, you might have been told that you have but 3 to 4 years to live. One doctor even told a patient to “go home and get his affairs in orderâ€. That is pure bunk. NO DOCTOR CAN PREDICT WHEN A NEWLY DIAGNOSED IPF PATIENT WILL DIE. The statistic that is quoted of 3.6 years from diagnosis to death is THE “MEAN†TIME. That means that one half of the patients die within 3.6 years. BUT THE OTHER HALF LIVE LONGER – OFTEN MUCH LONGER. We have a new member of our group that was diagnosed 20 years ago. And all of this data was collected when there was no treatment available. But things are changing – and fast. One new drug has showed promise and has been submitted to the FDC for approval. Another has showed a 68% improvement in phase two trials and is now nearing completion of a phase three trial. (I am in the study.) A third drug in the same family is now enrolling patients in a phase three study. Ask your pulmonologist about joining the Letaris study. Very little is known about IPF. Is there a genetic component? An autoimmune component? Why do some people live a very long time? We simply do not know yet but the knowledge base is growing fast. Chances are excellent that we will soon have an effective drug on the market. So stay positive, Dona. The initial shock will pass. You will get over it and decide to fight this disease. And chances are very good that you will do well for a number of years. If you have no one else to turn to, call me on . Regards, Jack McVickers, sdale From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of simply-irresistible Sent: Monday, November 02, 2009 7:39 PM To: Breathe-Support@ yahoogroups. com Subject: PF and Depression I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache, extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression? Wishing All a good night. Donna (Iowa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Donna. Sorry about your current situation. Its a Bummer! most of us here have similar stories. I myself went to a Dr. appointment feeling rather healthy and ready to take on the world when I was suddenly told you Have IPF. Three year survival rate! plus I want you to be on O2 24/7! The same day thew O2 company arrived at my home large green bottles (while my wife and I were still devastated from the tragic information the Dr. had given to us earlier that same day) I felt doomed! But, thanks to this group......I began to gain perspective, and someone on the board said something that really helped. They said do not look at O2 as a bad thing....Look at it as an ENABLER! I thought yes...that's it,, its going to help me do things I wouldn't otherwise be able to do. So I embraced it, and begin to research more and found, I really didn't need those big green bottles, there were other alternatives....Liquid O2 and many other choices. Donna, listen to your body, rest when you need it, there will be time later to take this IPF full on....as you feel better look into rehab, it helped most of to get on the right track. But now just realax, keep Oxygenated, think about getting a oximiter to track your O2 level (Most of us have them) and most of us would not be with out one. but, for now, justa relax and know there are many of us on this board that will help in any way we can. --- On Tue, 11/3/09, pianolady_musicgirl wrote Subject: Re: PF and DepressionTo: Breathe-Support Date: Tuesday, November 3, 2009, 10:58 AM Donna, Sorry to hear that you are home from the hospital with oxygen. It is hard NOT to feel overwhelmed as I know you do. I have been on oxygen 24/7 for 5 years and I am able to function and go places, etc. I do many things. Donna, take this time in your life to start feeling better after you were sick in the hospital. When you get over what ever you were in the hospital for, you will feel better, even with oxygen. Get plenty of rest, relax, etc. The oxygen will help you to feel better so your body doesn't have to work as hard. All of us here have anixiety when it comes to breathing. You will learn to deal with it and life will get better for you. Good luck at the pulmo appointment next week. Let us know what the pulmo-dude says. Remember: Relax, Nap, etc. Come back on the board and tell us more about yourself. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache, extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. > > How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression?> > Wishing All a good night.> Donna> (Iowa)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 I deal with fatigue by resting when I can throughout the day. Get to bed at a regular time. And if I wake up early, I've found it's easier to get up and find something to do like wash clothes or catch up on the internet and emails. I usually end up with a headache if I force myself to lie there and try to sleep. With depression I will either vent here on this site, or count my blessings, that usually puts things in perspective. Here there are people who are worse off and yet seem content. I'm a relative newbie so I keep tripping on the depression thing, but it's not as bad as it was. And of course pray! How could I forget that?! Know that we care Donna. Were all in this together and were listening. Rest well and keep your chin up.PJ in OH, 54, IPF 09, Sjogren's 95 PF and Depression I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache,extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression?Wishing All a good night.Donna(Iowa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 IPF, especially in the early months after diagnosis, makes one feel isolated which in turn makes one withdraw inward. That's when the depression steps in. I was lucky that I was not allowed that. A large family and a large group of friends and co-workers huddled over me like a group clucking hens. And they still do after six years. I can talk openly about my life with IPF which allows me to not hold my feelings in. It's the best antidote for depression. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Wed, November 4, 2009 2:32:06 PMSubject: Re: PF and Depression I deal with fatigue by resting when I can throughout the day. Get to bed at a regular time. And if I wake up early, I've found it's easier to get up and find something to do like wash clothes or catch up on the internet and emails. I usually end up with a headache if I force myself to lie there and try to sleep. With depression I will either vent here on this site, or count my blessings, that usually puts things in perspective. Here there are people who are worse off and yet seem content. I'm a relative newbie so I keep tripping on the depression thing, but it's not as bad as it was. And of course pray! How could I forget that?! Know that we care Donna. Were all in this together and were listening. Rest well and keep your chin up.PJ in OH, 54, IPF 09, Sjogren's 95 PF and Depression I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache, extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression?Wishing All a good night.Donna(Iowa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Perhaps this news announcement of earlier today will cheer you up a bit. Hang in there!!!! Jack Mc sdale From: Coalition for Pulmonary Fibrosis Sent: Wednesday, November 04, 2009 3:28 PM To: Subject: InterMune files NDA for Pirfenidone with FDA Dear CPF Member, In an effort to keep our members and patients apprised of major news related to drug trials, we would like to inform you that InterMune has submitted a new drug application (NDA) for Pirfenidone to the Food & Drug Administration (FDA). Please read the company's press release for details below. The FDA will now review the new drug application to determine if the drug will become an approved therapy for the treatment of PF. We will alert you to any news regarding the status of Pirfenidone or any other drugs being submitted to the FDA for approval. Sincerely, Mishka Michon, CPF Chief Executive Officer INTERMUNE ANNOUNCES SUBMISSION OF NDA FOR PIRFENIDONE FOR THE TREATMENT OF PATIENTS WITH IPF Brisbane, Calif., November 4, 2009 – InterMune, Inc. (Nasdaq: ITMN) today announced that it has submitted an electronic New Drug Application (NDA) with the U.S. Food and Drug Administration (FDA) seeking approval to market pirfenidone for the treatment of patients with idiopathic pulmonary fibrosis (IPF). Pirfenidone has been granted Orphan Drug and Fast Track designation by the FDA, and also has been granted Orphan Drug status in Europe. “IPF is a rapidly and uniformly fatal disease. Sadly, there are no medicines approved for the approximately 100,000 Americans who suffer from this terrible disease, †said Dan Welch, Chairman, Chief Executive Officer and President of InterMune. “InterMune has dedicated almost ten years to the development of new medicines for patients with IPF. We are very proud to have submitted the first NDA ever submitted to the FDA for a medicine to treat IPF patients.†About Pirfenidone Preclinical and in-vitro evidence had shown that pirfenidone has both anti-fibrotic and antiinflammatory effects. Results from three adequate and well-controlled Phase 3 studies have shown evidence of a treatment effect in IPF patients and the compound has been safe and generally well tolerated, with side effects including photosensitivity rash and gastrointestinal symptoms. InterMune licensed pirfenidone from Marnac, Inc. and its co-licensor, KDL GmbH, in 2002 and in 2007 purchased from Marnac and KDL the rights to sell the compound in the United States, Europe and other territories except in Japan, Taiwan and South Korea where rights to the molecule were licensed by Marnac and KDL to Shionogi & Co. Ltd. of Japan. In October of 2008, pirfenidone was approved for use in IPF patients in Japan and is marketed as Pirespa® by Shionogi in that country. About IPF Idiopathic pulmonary fibrosis (IPF) is a disabling and ultimately fatal disease that affects approximately 200,000 patients in the United States and Europe combined, with approximately 30,000 new cases reported per year in each of the United States and Europe. IPF is characterized by inflammation and scarring (fibrosis) in the lungs, hindering the ability to process oxygen and causing shortness of breath (dyspnea) and cough and is a progressive disease, meaning that over time, lung scarring and symptoms increase in severity. The median survival time from diagnosis is two to five years, with a five-year survival rate of approximately 20%. Patients diagnosed with IPF are usually between the ages of 40 and 70, with a median age of 63 years and the disease tends to affect slightly more men than women. There are no medicines approved in the United States or Europe for IPF. About InterMune InterMune is a biotechnology company focused on the research, development and commercialization of innovative therapies in pulmonology and hepatology. InterMune has an R & D portfolio addressing idiopathic pulmonary fibrosis (IPF) and hepatitis C virus (HCV) infections. The pulmonology portfolio includes pirfenidone for which InterMune has completed a Phase 3 program in patients with IPF (CAPACITY) and has submitted a New Drug Application (NDA) to the FDA. The hepatology portfolio includes the HCV protease inhibitor compound RG7227 (ITMN-191) that entered Phase 2b in August of 2009 and a secondgeneration HCV protease inhibitor research program. For additional information about InterMune and its R & D pipeline, please visit www.intermune.com. From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Embarq Customer Sent: Wednesday, November 04, 2009 12:32 PM To: Breathe-Support Subject: Re: PF and Depression I deal with fatigue by resting when I can throughout the day. Get to bed at a regular time. And if I wake up early, I've found it's easier to get up and find something to do like wash clothes or catch up on the internet and emails. I usually end up with a headache if I force myself to lie there and try to sleep. With depression I will either vent here on this site, or count my blessings, that usually puts things in perspective. Here there are people who are worse off and yet seem content. I'm a relative newbie so I keep tripping on the depression thing, but it's not as bad as it was. And of course pray! How could I forget that?! Know that we care Donna. Were all in this together and were listening. Rest well and keep your chin up. PJ in OH, 54, IPF 09, Sjogren's 95 PF and Depression I have been so overwhelmed since my 6 day hospital stay and being sent home with oxygen. This was the first time I have ever been sent home with oxygen. I am on it 24/7 because my oxygen level drops quite low and quite fast Before all this I was already on an antidepressant (Zoloft). I also have more anxiety and my Dr has given me meds to use for that! Today has just been a bad day. I am breathing alright just alot of coughing,headache,extremely fatigued (took a few naps today)and just achey! Im not sleeping well at night and this month I have a sleep study. I see my Pulmonologist Next Monday for the first time Nov 9.My coping skills seem to have went out the window today. It was hard to stay in just today. Trying to look at the whole picture is very overwhelming! I had a hard cry today and that seemed to help some. How do you all deal with the fatigue and do any of you suffer badly with it? How do you deal with the depression? Wishing All a good night. Donna (Iowa) 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.