Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi Merf, I read your post about your PFTs and your statement about slipping and wondering if it was the Drug Trials of natural progression. I had to call my wife in from the other room to read it---you described exactly what I have been going through the last 3 months. I have been stable for the last 2 1/2 years and on the Bosentan Drug Trial since July of '08. My PFTs are starting to show a downward trend and as of the last 3 months I have felt the decline in my chest along with some areas that seem to be a little more sensitive than before and other areas that feel like I could pound on my chest and not feel it at all. I have not been able to get a full breath which indicates that I am loosing some lung capacity and it is harder for me to maintain my sats above 90 when exercising (I am not on o2 yet), I can do it, but I have to maitain a good breathing pattern to do it. My oximeter gets a very rigorous workout everyday--LOL. I have found that it is better for me when I don't eat after 7:30 PM, I go to bed at 1 or 2 in the morning and don't get up until 10-1100AM--take my meds lay down for about 1 hour then eat a small breakfast, walk my dog then go to the gym and workout---this seems to work very well for me. It seems that the reality of this disease is starting to rear its ugly head and I don't like the way it looks but I have been preparing for what I view as the enevitable and that is a Transplant, I workout 4-5 days a week and have lost 52 pounds since January 2007. I do not diet, I just cut back on quantity (smaller portions & no seconds), exercise regularly (not very hard) and not eating after 7:30 at night and it seems to work for me (I do cheat once in a while but not very often). Every since my first symptoms in 2005, I have noticed that anytime I have felt any progression it was always between November and February the coldest and wettest time of the year. Usually in April I begin to feel better again and the hotter it gets the better I feel. I lived in Washington State when this disease started (2005), then moved to Arizona a year later and found the heat to be a life saver for me--I love the 100-115 dry heat, my lungs feel great when its that hot. Sorry I rattled on so much here, but I would like to know how you are doing and if there is any more progression, I have a feeling that I'm not to far behind you, my sats are close to yours, my symptoms started in 2005 but was wrongly DX for 2 years, I'm 63 y/o and just as scared as you--LOL. Goog luck and hopefully the weather is causing most of our problems. G. UIP/IPF 5/07 AZ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 scott thank you for being in a drug trial Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Merf PFTsTo: Breathe-Support Date: Sunday, January 24, 2010, 3:27 AM Hi Merf, I read your post about your PFTs and your statement about slipping and wondering if it was the Drug Trials of natural progression. I had to call my wife in from the other room to read it---you described exactly what I have been going through the last 3 months. I have been stable for the last 2 1/2 years and on the Bosentan Drug Trial since July of '08. My PFTs are starting to show a downward trend and as of the last 3 months I have felt the decline in my chest along with some areas that seem to be a little more sensitive than before and other areas that feel like I could pound on my chest and not feel it at all. I have not been able to get a full breath which indicates that I am loosing some lung capacity and it is harder for me to maintain my sats above 90 when exercising (I am not on o2 yet), I can do it, but I have to maitain a good breathing pattern to do it. My oximeter gets a very rigorous workout everyday--LOL. I have found that it is better for me when I don't eat after 7:30 PM, I go to bed at 1 or 2 in the morning and don't get up until 10-1100AM--take my meds lay down for about 1 hour then eat a small breakfast, walk my dog then go to the gym and workout---this seems to work very well for me. It seems that the reality of this disease is starting to rear its ugly head and I don't like the way it looks but I have been preparing for what I view as the enevitable and that is a Transplant, I workout 4-5 days a week and have lost 52 pounds since January 2007. I do not diet, I just cut back on quantity (smaller portions & no seconds), exercise regularly (not very hard) and not eating after 7:30 at night and it seems to work for me (I do cheat once in a while but not very often). Every since my first symptoms in 2005, I have noticed that anytime I have felt any progression it was always between November and February the coldest and wettest time of the year. Usually in April I begin to feel better again and the hotter it gets the better I feel. I lived in Washington State when this disease started (2005), then moved to Arizona a year later and found the heat to be a life saver for me--I love the 100-115 dry heat, my lungs feel great when its that hot. Sorry I rattled on so much here, but I would like to know how you are doing and if there is any more progression, I have a feeling that I'm not to far behind you, my sats are close to yours, my symptoms started in 2005 but was wrongly DX for 2 years, I'm 63 y/o and just as scared as you--LOL. Goog luck and hopefully the weather is causing most of our problems. G. UIP/IPF 5/07 AZ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi , Sorry to hear your sats are dropping, please get on oxygen! If you are dropping below 90 when at the gym or walking your dog, you need O2 for exertion! When trying to exercise without O2 you are working your body too hard in order to keep your sats up on your own by resting or stopping and also causing yourself added stress. You may find the O2 eases your chest discomfort too, you're just not getting enough O2 to your other vital organs that need it. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Sun, January 24, 2010 12:27:47 AMSubject: Merf PFTs Hi Merf, I read your post about your PFTs and your statement about slipping and wondering if it was the Drug Trials of natural progression. I had to call my wife in from the other room to read it---you described exactly what I have been going through the last 3 months. I have been stable for the last 2 1/2 years and on the Bosentan Drug Trial since July of '08. My PFTs are starting to show a downward trend and as of the last 3 months I have felt the decline in my chest along with some areas that seem to be a little more sensitive than before and other areas that feel like I could pound on my chest and not feel it at all. I have not been able to get a full breath which indicates that I am loosing some lung capacity and it is harder for me to maintain my sats above 90 when exercising (I am not on o2 yet), I can do it, but I have to maitain a good breathing pattern to do it. My oximeter gets a very rigorous workout everyday--LOL. I have found that it is better for me when I don't eat after 7:30 PM, I go to bed at 1 or 2 in the morning and don't get up until 10-1100AM--take my meds lay down for about 1 hour then eat a small breakfast, walk my dog then go to the gym and workout---this seems to work very well for me. It seems that the reality of this disease is starting to rear its ugly head and I don't like the way it looks but I have been preparing for what I view as the enevitable and that is a Transplant, I workout 4-5 days a week and have lost 52 pounds since January 2007. I do not diet, I just cut back on quantity (smaller portions & no seconds), exercise regularly (not very hard) and not eating after 7:30 at night and it seems to work for me (I do cheat once in a while but not very often).. Every since my first symptoms in 2005, I have noticed that anytime I have felt any progression it was always between November and February the coldest and wettest time of the year. Usually in April I begin to feel better again and the hotter it gets the better I feel. I lived in Washington State when this disease started (2005), then moved to Arizona a year later and found the heat to be a life saver for me--I love the 100-115 dry heat, my lungs feel great when its that hot. Sorry I rattled on so much here, but I would like to know how you are doing and if there is any more progression, I have a feeling that I'm not to far behind you, my sats are close to yours, my symptoms started in 2005 but was wrongly DX for 2 years, I'm 63 y/o and just as scared as you--LOL. Goog luck and hopefully the weather is causing most of our problems. G. UIP/IPF 5/07 AZ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 ....I just read this post to Merf....so I'm aware of your update now. The progression is a bit hard to cope with isn't it. I've had some too and the SOB becoming worse is of course a worry. I tell myself, it will get worse but it doesn't comfort me a lot now... A pat on the head for Dakota! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Godfrey Sent: Sunday, January 24, 2010 12:27 AM To: Breathe-Support Subject: Merf PFTs Hi Merf, I read your post about your PFTs and your statement about slipping and wondering if it was the Drug Trials of natural progression. I had to call my wife in from the other room to read it---you described exactly what I have been going through the last 3 months. I have been stable for the last 2 1/2 years and on the Bosentan Drug Trial since July of '08. My PFTs are starting to show a downward trend and as of the last 3 months I have felt the decline in my chest along with some areas that seem to be a little more sensitive than before and other areas that feel like I could pound on my chest and not feel it at all. I have not been able to get a full breath which indicates that I am loosing some lung capacity and it is harder for me to maintain my sats above 90 when exercising (I am not on o2 yet), I can do it, but I have to maitain a good breathing pattern to do it. My oximeter gets a very rigorous workout everyday--LOL. I have found that it is better for me when I don't eat after 7:30 PM, I go to bed at 1 or 2 in the morning and don't get up until 10-1100AM--take my meds lay down for about 1 hour then eat a small breakfast, walk my dog then go to the gym and workout---this seems to work very well for me. It seems that the reality of this disease is starting to rear its ugly head and I don't like the way it looks but I have been preparing for what I view as the enevitable and that is a Transplant, I workout 4-5 days a week and have lost 52 pounds since January 2007. I do not diet, I just cut back on quantity (smaller portions & no seconds), exercise regularly (not very hard) and not eating after 7:30 at night and it seems to work for me (I do cheat once in a while but not very often). Every since my first symptoms in 2005, I have noticed that anytime I have felt any progression it was always between November and February the coldest and wettest time of the year. Usually in April I begin to feel better again and the hotter it gets the better I feel. I lived in Washington State when this disease started (2005), then moved to Arizona a year later and found the heat to be a life saver for me--I love the 100-115 dry heat, my lungs feel great when its that hot. Sorry I rattled on so much here, but I would like to know how you are doing and if there is any more progression, I have a feeling that I'm not to far behind you, my sats are close to yours, my symptoms started in 2005 but was wrongly DX for 2 years, I'm 63 y/o and just as scared as you--LOL. Goog luck and hopefully the weather is causing most of our problems. G. UIP/IPF 5/07 AZ. No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2640 - Release Date: 01/22/10 23:33:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi & Merf & others in this group that finds ourselves edging towards the dreaded 'Progression'...it feels as though we've all been cocooned in a false sense of security (although none of us have been kidding ourselves!) We've taken in the Initial diagnosis... we were lucky enough to get time to take it all on board & DO practical things to help ourselves (like the diet/weight/exercise stuff/drug trials)..we've prepared ourselves as well as we can..... NOW we face the REAL challenge ..how each of us adjusts to each new milestone in this Journey. I'm getting better at using my O2....grab it BEFORE I go to make the Bed..hang out the Washing....etc.... Huge Thanks must go to this Forum in preparing we Kindergarten Kids what to expect when we reach Big School! TAke Heart & Merf..this is a BIG class & we'll go right through School together! love, in Oz Now I have to deal with the fact that even at 3LPM the POC's Alert Alarm sometimes starts screaming at me that I need MORE O2.....cleaning the bathroom...bending down to get stuff from cupboards....weeding the garden beds MMmmmmmm regardless of LFT numbers THIS POC machine is giving me immediaite bio-feedback about my O2 needs..... I'm going to have to think about getting a BIG Mama POC for use around the house.... >> Hi Merf,> I read your post about your PFTs and your statement about slipping and wondering if it was the Drug Trials of natural progression. I had to call my wife in from the other room to read it---you described exactly what I have been going through the last 3 months.> I have been stable for the last 2 1/2 years and on the Bosentan Drug Trial since July of '08. My PFTs are starting to show a downward trend and as of the last 3 months I have felt the decline in my chest along with some areas that seem to be a little more sensitive than before and other areas that feel like I could pound on my chest and not feel it at all. I have not been able to get a full breath which indicates that I am loosing some lung capacity> and it is harder for me to maintain my sats above 90 when exercising (I am not on o2 yet),> I can do it, but I have to maitain a good breathing pattern to do it. My oximeter gets a very rigorous workout everyday--LOL. > I have found that it is better for me when I don't eat after 7:30 PM, I go to bed at 1 or 2 in the morning and don't get up until 10-1100AM--take my meds lay down for about 1 hour then eat a small breakfast, walk my dog then go to the gym and workout---this seems to work very well for me. > It seems that the reality of this disease is starting to rear its ugly head and I don't like the way it looks but I have been preparing for what I view as the enevitable and that is a Transplant, I workout 4-5 days a week and have lost 52 pounds since January 2007. I do not diet, I just cut back on quantity (smaller portions & no seconds), exercise regularly (not very hard) and not eating after 7:30 at night and it seems to work for me (I do cheat once in a while but not very often). > Every since my first symptoms in 2005, I have noticed that anytime I have felt any progression it was always between November and February the coldest and wettest time of the year. Usually in April I begin to feel better again and the hotter it gets the better I feel. I lived in Washington State when this disease started (2005), then moved to Arizona a year later and found the heat to be a life saver for me--I love the 100-115 dry heat, my lungs feel great when its that hot.> Sorry I rattled on so much here, but I would like to know how you are doing and if there is any more progression, I have a feeling that I'm not to far behind you, my sats are close to yours, my symptoms started in 2005 but was wrongly DX for 2 years, I'm 63 y/o and just as scared as you--LOL. Goog luck and hopefully the weather is causing most of our problems.> G. UIP/IPF 5/07 AZ.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 , Three weeks ago I had a drop of 8% since last July in my PFT's. It is not a good thing but we all are in the same boat. I also knew I was declining. I told my wife prior to the tests not to be shocked as I felt a difference. Keep the faith and we will pray for each other. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Merf PFTs Hi Merf, I read your post about your PFTs and your statement about slipping and wondering if it was the Drug Trials of natural progression. I had to call my wife in from the other room to read it---you described exactly what I have been going through the last 3 months. I have been stable for the last 2 1/2 years and on the Bosentan Drug Trial since July of '08. My PFTs are starting to show a downward trend and as of the last 3 months I have felt the decline in my chest along with some areas that seem to be a little more sensitive than before and other areas that feel like I could pound on my chest and not feel it at all. I have not been able to get a full breath which indicates that I am loosing some lung capacity and it is harder for me to maintain my sats above 90 when exercising (I am not on o2 yet), I can do it, but I have to maitain a good breathing pattern to do it. My oximeter gets a very rigorous workout everyday--LOL. I have found that it is better for me when I don't eat after 7:30 PM, I go to bed at 1 or 2 in the morning and don't get up until 10-1100AM--take my meds lay down for about 1 hour then eat a small breakfast, walk my dog then go to the gym and workout---this seems to work very well for me. It seems that the reality of this disease is starting to rear its ugly head and I don't like the way it looks but I have been preparing for what I view as the enevitable and that is a Transplant, I workout 4-5 days a week and have lost 52 pounds since January 2007. I do not diet, I just cut back on quantity (smaller portions & no seconds), exercise regularly (not very hard) and not eating after 7:30 at night and it seems to work for me (I do cheat once in a while but not very often). Every since my first symptoms in 2005, I have noticed that anytime I have felt any progression it was always between November and February the coldest and wettest time of the year. Usually in April I begin to feel better again and the hotter it gets the better I feel. I lived in Washington State when this disease started (2005), then moved to Arizona a year later and found the heat to be a life saver for me--I love the 100-115 dry heat, my lungs feel great when its that hot. Sorry I rattled on so much here, but I would like to know how you are doing and if there is any more progression, I have a feeling that I'm not to far behind you, my sats are close to yours, my symptoms started in 2005 but was wrongly DX for 2 years, I'm 63 y/o and just as scared as you--LOL. Goog luck and hopefully the weather is causing most of our problems. G. UIP/IPF 5/07 AZ. No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2640 - Release Date: 01/22/10 23:33:00 Quote Link to comment Share on other sites More sharing options...
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