Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 , Before you give the script for the O2 to the O2 company...make a few copies to have on hand. In case you need a refill while away..you'll have the script. Your doc could have called the script in to the company. What form of O2 are you using ...liquid or gaseous? I know you've been through hell with all the medical problems. How do they suggest that you gain weight? I need to ask because that's definitely never been one of my problems...I'm sort of Fluffy to steal from another board member! I have always had a weight issue...but believe it or not I have not gained more than 6lbs from all the time on Prednsone!!! Three years and counting! I can be 6lbs up or down depending on fluid retention! What I do have is lack of muscle and it's a battle to keep active enough to strengthen my legs and upper body We all handle this disease as differently as we are different! Good luck!!! Stay positive and enjoy your day. 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 wrote: Hey everybody; hope all is well *hugs*. I saw my lung doctor this afternoon. She said there isn't much to be done but she wants to try prednisone for two weeks. The other lung doctors didn't put me on predinsone because they thought it wasn't going to do anything beneifical for me. I don't know how I am going to go through with taking this nasty medication. I cannot swallow pills, and I've had my share of it crushed during my cancer days and it's so bitter! It is going to be very difficult for me. She didn't want to subject me to a open biopsy of my lungs she told us she didn't want to make me sicker plus the recovery time from that. My dad wanted me to mention a lung transplant but she also said due to my weight and whatnot it wouldn't be a possibility. She also got me my portable oxygen tank, I use 3 liters with activity; but she gave me the RX I don't know what to do with it cause I thought the drs had to call the company and give them the script. Plus she also added a humidifier to my oxygen at home to ease the bloody noses I've been getting. Plus a refill on my rescue inhaler. I see her in two weeks and I get a CT scan beforehand without contrast (woot! arms saved again). My arms were saved from a artery gas I didn't have to give them any blood. /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~. No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 I don't know what kind of O2 I'm on..how can I tell? I think it's the gaseous kind. Everybody just tells me to eat, I don't know what they want me to do to gain weight. /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~ > > > Hey everybody; hope all is well *hugs*. > > > > I saw my lung doctor this afternoon. She said there isn't much to be > > done but she wants to try prednisone for two weeks. The other lung > > doctors didn't put me on predinsone because they thought it wasn't > > going to do anything beneifical for me. I don't know how I am going to > > go through with taking this nasty medication. I cannot swallow pills, > > and I've had my share of it crushed during my cancer days and it's so > > bitter! It is going to be very difficult for me. > > > > She didn't want to subject me to a open biopsy of my lungs she told us > > she didn't want to make me sicker plus the recovery time from that. My > > dad wanted me to mention a lung transplant but she also said due to my > > weight and whatnot it wouldn't be a possibility. > > > > She also got me my portable oxygen tank, I use 3 liters with activity; > > but she gave me the RX I don't know what to do with it cause I thought > > the drs had to call the company and give them the script. Plus she > > also added a humidifier to my oxygen at home to ease the bloody noses > > I've been getting. Plus a refill on my rescue inhaler. I see her in > > two weeks and I get a CT scan beforehand without contrast (woot! arms > > saved again). My arms were saved from a artery gas I didn't have to > > give them any blood. > > > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ > > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to > > chemotherapy 06/2008 ~. > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 , Do you have tanks with green tops that have to be replaced? Do you have a noisy machine ( concentrator) that is plugged in? Or do you have a large ( R2D2 type) tank that hooks up to the tubing? If you have green tanks that's compressed gaseous, the concentrator is gaseous but not compressed under pressure and the last one is liquid O2. What does the portable thing look like? About the gaining weight...try to add calories from Ensure type drinks in between meals. Your doctors should refer you to a nutritionist to help you get stronger and put the weight on. Considering that I'm almost 3x your age and my youngest child is a 28 yearold married man, I cannot imagine what kind of life you are leading now with all the medical issues you have to face daily. Please know that whatever I can do to help I'll try...you're just another of my kids!!! 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 wrote: I don't know what kind of O2 I'm on..how can I tell? I think it's the gaseous kind. Everybody just tells me to eat, I don't know what they want me to do to gain weight. /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~ > > > Hey everybody; hope all is well *hugs*. > > > > I saw my lung doctor this afternoon. She said there isn't much to be > > done but she wants to try prednisone for two weeks. The other lung > > doctors didn't put me on predinsone because they thought it wasn't > > going to do anything beneifical for me. I don't know how I am going to > > go through with taking this nasty medication. I cannot swallow pills, > > and I've had my share of it crushed during my cancer days and it's so > > bitter! It is going to be very difficult for me. > > > > She didn't want to subject me to a open biopsy of my lungs she told us > > she didn't want to make me sicker plus the recovery time from that. My > > dad wanted me to mention a lung transplant but she also said due to my > > weight and whatnot it wouldn't be a possibility. > > > > She also got me my portable oxygen tank, I use 3 liters with activity; > > but she gave me the RX I don't know what to do with it cause I thought > > the drs had to call the company and give them the script. Plus she > > also added a humidifier to my oxygen at home to ease the bloody noses > > I've been getting. Plus a refill on my rescue inhaler. I see her in > > two weeks and I get a CT scan beforehand without contrast (woot! arms > > saved again). My arms were saved from a artery gas I didn't have to > > give them any blood. > > > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ > > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to > > chemotherapy 06/2008 ~. > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 I have a concentrator & green topped tanks. I don't know what the portable tanks look like I haven't done anything with the script yet. My doctor has reffered (SP) me to a dietitian she calls me once and awhile on the phone. You have no idea how many times I have heard about Ensure and all that. ; My life isn't that exciting now...I stay home a lot because of my lungs..I can't work (I miss it a lot too)..on Social Security getting disability. /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~ > > > > > > > Hey everybody; hope all is well *hugs*. > > > > > > > > I saw my lung doctor this afternoon. She said there isn't much to be > > > > done but she wants to try prednisone for two weeks. The other lung > > > > doctors didn't put me on predinsone because they thought it wasn't > > > > going to do anything beneifical for me. I don't know how I am > > going to > > > > go through with taking this nasty medication. I cannot swallow pills, > > > > and I've had my share of it crushed during my cancer days and it's so > > > > bitter! It is going to be very difficult for me. > > > > > > > > She didn't want to subject me to a open biopsy of my lungs she > > told us > > > > she didn't want to make me sicker plus the recovery time from > > that. My > > > > dad wanted me to mention a lung transplant but she also said due > > to my > > > > weight and whatnot it wouldn't be a possibility. > > > > > > > > She also got me my portable oxygen tank, I use 3 liters with > > activity; > > > > but she gave me the RX I don't know what to do with it cause I > > thought > > > > the drs had to call the company and give them the script. Plus she > > > > also added a humidifier to my oxygen at home to ease the bloody noses > > > > I've been getting. Plus a refill on my rescue inhaler. I see her in > > > > two weeks and I get a CT scan beforehand without contrast (woot! arms > > > > saved again). My arms were saved from a artery gas I didn't have to > > > > give them any blood. > > > > > > > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ > > > > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to > > > > chemotherapy 06/2008 ~. > > > > > > > > > > > > > > > >No virus found in this incoming message. > > > >Checked by AVG - http://www.avg.com <http://www.avg.com> > > > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: > > 7/21/2008 6:42 AM > > > > > > > > > > > > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Kim ... I'm sure sorry you have to put up with so much at your young age. It sounds like your Dr didn't prepare you for the use of O2. In my experience, the Dr. faxes an O2 provider and they bring according to her Rx. They can answer your questions all about O2. Sounds like you need to call Dr and get more info. Good luck. It can be confusing at first. God bless. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! My Doctor Visit Today Hey everybody; hope all is well *hugs*.I saw my lung doctor this afternoon. She said there isn't much to be done but she wants to try prednisone for two weeks. The other lung doctors didn't put me on predinsone because they thought it wasn't going to do anything beneifical for me. I don't know how I am going to go through with taking this nasty medication. I cannot swallow pills, and I've had my share of it crushed during my cancer days and it's so bitter! It is going to be very difficult for me. She didn't want to subject me to a open biopsy of my lungs she told us she didn't want to make me sicker plus the recovery time from that. My dad wanted me to mention a lung transplant but she also said due to my weight and whatnot it wouldn't be a possibility.She also got me my portable oxygen tank, I use 3 liters with activity; but she gave me the RX I don't know what to do with it cause I thought the drs had to call the company and give them the script. Plus she also added a humidifier to my oxygen at home to ease the bloody noses I've been getting. Plus a refill on my rescue inhaler. I see her in two weeks and I get a CT scan beforehand without contrast (woot! arms saved again). My arms were saved from a artery gas I didn't have to give them any blood./23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Hi Kim, I developed PF due to the Methotrexate medication...which I'm taking for Crohn's Disease. I'm 35yrs old. I'm not familiar how O2 providers work, a lot of other members on the board will be able to help you more. Since my diagnosis of PF I only required 3 litres of oxygen three times and that was in the emergency room and overnight stay in one of the rooms on the hospital floor. IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 My Doctor Visit Today Hey everybody; hope all is well *hugs*.I saw my lung doctor this afternoon. She said there isn't much to be done but she wants to try prednisone for two weeks. The other lung doctors didn't put me on predinsone because they thought it wasn't going to do anything beneifical for me. I don't know how I am going to go through with taking this nasty medication. I cannot swallow pills, and I've had my share of it crushed during my cancer days and it's so bitter! It is going to be very difficult for me. She didn't want to subject me to a open biopsy of my lungs she told us she didn't want to make me sicker plus the recovery time from that. My dad wanted me to mention a lung transplant but she also said due to my weight and whatnot it wouldn't be a possibility.She also got me my portable oxygen tank, I use 3 liters with activity; but she gave me the RX I don't know what to do with it cause I thought the drs had to call the company and give them the script. Plus she also added a humidifier to my oxygen at home to ease the bloody noses I've been getting. Plus a refill on my rescue inhaler. I see her in two weeks and I get a CT scan beforehand without contrast (woot! arms saved again). My arms were saved from a artery gas I didn't have to give them any blood./23/ Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~. Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Hi Kim, I developed PF due to the Methotrexate medication...which I'm taking for Crohn's Disease. I'm 35yrs old. I'm not familiar how O2 providers work, a lot of other members on the board will be able to help you more. Since my diagnosis of PF I only required 3 litres of oxygen three times and that was in the emergency room and overnight stay in one of the rooms on the hospital floor. IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 My Doctor Visit Today Hey everybody; hope all is well *hugs*.I saw my lung doctor this afternoon. She said there isn't much to be done but she wants to try prednisone for two weeks. The other lung doctors didn't put me on predinsone because they thought it wasn't going to do anything beneifical for me. I don't know how I am going to go through with taking this nasty medication. I cannot swallow pills, and I've had my share of it crushed during my cancer days and it's so bitter! It is going to be very difficult for me. She didn't want to subject me to a open biopsy of my lungs she told us she didn't want to make me sicker plus the recovery time from that. My dad wanted me to mention a lung transplant but she also said due to my weight and whatnot it wouldn't be a possibility.She also got me my portable oxygen tank, I use 3 liters with activity; but she gave me the RX I don't know what to do with it cause I thought the drs had to call the company and give them the script. Plus she also added a humidifier to my oxygen at home to ease the bloody noses I've been getting. Plus a refill on my rescue inhaler. I see her in two weeks and I get a CT scan beforehand without contrast (woot! arms saved again). My arms were saved from a artery gas I didn't have to give them any blood./23/ Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~. All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 , Once you get the portable O2 set up..try to get out as much as you are able to. It will really make a difference in your outlook. Even if you just go to a nearby shopping mall and walk around at your own pace. Do you do crafts? Enjoy reading ? Movies? Hobbies? Get yourself to a store that involves your hobby...you don't have to buy anything!!! I go to the AC or 's craft stores when I'm feeling cooped up...I frequently but nothing!!! Now if I happen to go past a Babies R Us store that's a different story all together!!! I have two gorgeous grand-daughters ( see them in my photo album). I have to buy things for them!!! Anyway, the portable O2 will be very helpful to your state of mind. Don't worry about what other people might think. ...they're too busy being self-absorbed! Just get out! I'm sorry that I also mentioned the Ensure,,it's the only thing I could think of. There are Yogurt smoothees already to drink too! Hey, you could eat whatever you want..ice cream, cake, candy..they all have the erxtra calories to help gain weight..I just figured that healthy ideas sounded better coming from a Mom who is doing a bit of nagging. Take care. 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 wrote: I have a concentrator & green topped tanks. I don't know what the portable tanks look like I haven't done anything with the script yet. My doctor has reffered (SP) me to a dietitian she calls me once and awhile on the phone. You have no idea how many times I have heard about Ensure and all that. ; My life isn't that exciting now...I stay home a lot because of my lungs..I can't work (I miss it a lot too)..on Social Security getting disability. /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~ > > > > > > > Hey everybody; hope all is well *hugs*. > > > > > > > > I saw my lung doctor this afternoon. She said there isn't much to be > > > > done but she wants to try prednisone for two weeks. The other lung > > > > doctors didn't put me on predinsone because they thought it wasn't > > > > going to do anything beneifical for me. I don't know how I am > > going to > > > > go through with taking this nasty medication. I cannot swallow pills, > > > > and I've had my share of it crushed during my cancer days and it's so > > > > bitter! It is going to be very difficult for me. > > > > > > > > She didn't want to subject me to a open biopsy of my lungs she > > told us > > > > she didn't want to make me sicker plus the recovery time from > > that. My > > > > dad wanted me to mention a lung transplant but she also said due > > to my > > > > weight and whatnot it wouldn't be a possibility. > > > > > > > > She also got me my portable oxygen tank, I use 3 liters with > > activity; > > > > but she gave me the RX I don't know what to do with it cause I > > thought > > > > the drs had to call the company and give them the script. Plus she > > > > also added a humidifier to my oxygen at home to ease the bloody noses > > > > I've been getting. Plus a refill on my rescue inhaler. I see her in > > > > two weeks and I get a CT scan beforehand without contrast (woot! arms > > > > saved again). My arms were saved from a artery gas I didn't have to > > > > give them any blood. > > > > > > > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ > > > > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to > > > > chemotherapy 06/2008 ~. > > > > > > > > > > > > > > > >No virus found in this incoming message. > > > >Checked by AVG - http://www.avg.com <http://www.avg.com> > > > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: > > 7/21/2008 6:42 AM > > > > > > > > > > > > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Well my main hobby is playing video games, I was planning on going out once a week to the local game stores to see what was new and stuff like that. I can buy games after I pay my monthly bills with rest of my disability check which is fun. I like going to movies but it wears me out just to walk across the lobby to the theater so I've been waiting for DVD releases to come out. I eat all day it seems like I even wake up in the middle of the night to grab a little snack lol. Yogurt smoothies sounds good I'll have to look into those (never had them before). /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~ > > > > > > > > > > > Hey everybody; hope all is well *hugs*. > > > > > > > > > > > > I saw my lung doctor this afternoon. She said there isn't much > > to be > > > > > > done but she wants to try prednisone for two weeks. The other lung > > > > > > doctors didn't put me on predinsone because they thought it wasn't > > > > > > going to do anything beneifical for me. I don't know how I am > > > > going to > > > > > > go through with taking this nasty medication. I cannot swallow > > pills, > > > > > > and I've had my share of it crushed during my cancer days and > > it's so > > > > > > bitter! It is going to be very difficult for me. > > > > > > > > > > > > She didn't want to subject me to a open biopsy of my lungs she > > > > told us > > > > > > she didn't want to make me sicker plus the recovery time from > > > > that. My > > > > > > dad wanted me to mention a lung transplant but she also said due > > > > to my > > > > > > weight and whatnot it wouldn't be a possibility. > > > > > > > > > > > > She also got me my portable oxygen tank, I use 3 liters with > > > > activity; > > > > > > but she gave me the RX I don't know what to do with it cause I > > > > thought > > > > > > the drs had to call the company and give them the script. Plus she > > > > > > also added a humidifier to my oxygen at home to ease the > > bloody noses > > > > > > I've been getting. Plus a refill on my rescue inhaler. I see > > her in > > > > > > two weeks and I get a CT scan beforehand without contrast > > (woot! arms > > > > > > saved again). My arms were saved from a artery gas I didn't > > have to > > > > > > give them any blood. > > > > > > > > > > > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years > > 12/2005 ~ > > > > > > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis > > due to > > > > > > chemotherapy 06/2008 ~. > > > > > > > > > > > > > > > > > > > > > > > >No virus found in this incoming message. > > > > > >Checked by AVG - http://www.avg.com <http://www.avg.com> > > <http://www.avg.com <http://www.avg.com>> > > > > > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: > > > > 7/21/2008 6:42 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >No virus found in this incoming message. > > > >Checked by AVG - http://www.avg.com <http://www.avg.com> > > > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: > > 7/21/2008 6:42 AM > > > > > > > > > > > > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi Kim, I was wondering if your docs had thought what type of PF you have. I've never had a biopsy either, my docs had decided that as they already knew that mine responded to treatment a biopsy wasn't going to tell them anything new, but according to X rays and CT scans it is considered that I have NSIP type, which would follow that it does respond to meds. It might be worth finding out before you make a decision re pred. Love Ze xx>> Hey everybody; hope all is well *hugs*.> > I saw my lung doctor this afternoon. She said there isn't much to be> done but she wants to try prednisone for two weeks. The other lung> doctors didn't put me on predinsone because they thought it wasn't going> to do anything beneifical for me. I don't know how I am going to go> through with taking this nasty medication. I cannot swallow pills, and> I've had my share of it crushed during my cancer days and it's so> bitter! It is going to be very difficult for me.> > She didn't want to subject me to a open biopsy of my lungs she told us> she didn't want to make me sicker plus the recovery time from that. My> dad wanted me to mention a lung transplant but she also said due to my> weight and whatnot it wouldn't be a possibility.> > She also got me my portable oxygen tank, I use 3 liters with activity;> but she gave me the RX I don't know what to do with it cause I thought> the drs had to call the company and give them the script. Plus she also> added a humidifier to my oxygen at home to ease the bloody noses I've> been getting. Plus a refill on my rescue inhaler. I see her in two weeks> and I get a CT scan beforehand without contrast (woot! arms saved> again). My arms were saved from a artery gas I didn't have to give them> any blood.> > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~> Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to> chemotherapy 06/2008 ~.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi again Kim, Just adding to what said really. As far as going out with your jet pack, your friends and anyone else who matters will regard your nose hose with the same familiarity as they would a pair of glasses. I have customised mine and have all sorts of things that friends have made for me hanging off of it, as well as badges etc. I was going to get busy with some fabric paint, but I don't feel the need now. I don't really notice it now. Get out, even if it's to an internet cafe, with a couple of friends for a coffee. You may feel tired by the time you get home, but you will feel so much better for having gone out. Love Ze xx> > > > >> > > > > > Hey everybody; hope all is well *hugs*.> > > > > >> > > > > > I saw my lung doctor this afternoon. She said there isn't much> > to be> > > > > > done but she wants to try prednisone for two weeks. The other lung> > > > > > doctors didn't put me on predinsone because they thought it wasn't> > > > > > going to do anything beneifical for me. I don't know how I am> > > > going to> > > > > > go through with taking this nasty medication. I cannot swallow> > pills,> > > > > > and I've had my share of it crushed during my cancer days and> > it's so> > > > > > bitter! It is going to be very difficult for me.> > > > > >> > > > > > She didn't want to subject me to a open biopsy of my lungs she> > > > told us> > > > > > she didn't want to make me sicker plus the recovery time from> > > > that. My> > > > > > dad wanted me to mention a lung transplant but she also said due> > > > to my> > > > > > weight and whatnot it wouldn't be a possibility.> > > > > >> > > > > > She also got me my portable oxygen tank, I use 3 liters with> > > > activity;> > > > > > but she gave me the RX I don't know what to do with it cause I> > > > thought> > > > > > the drs had to call the company and give them the script. Plus she> > > > > > also added a humidifier to my oxygen at home to ease the> > bloody noses> > > > > > I've been getting. Plus a refill on my rescue inhaler. I see> > her in> > > > > > two weeks and I get a CT scan beforehand without contrast> > (woot! arms> > > > > > saved again). My arms were saved from a artery gas I didn't> > have to> > > > > > give them any blood.> > > > > >> > > > > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years> > 12/2005 ~> > > > > > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis> > due to> > > > > > chemotherapy 06/2008 ~.> > > > > >> > > > > >> > > > > >> > > > > >No virus found in this incoming message.> > > > > >Checked by AVG - http://www.avg.com <http://www.avg.com> > > <http://www.avg.com <http://www.avg.com>>> > > > > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date:> > > > 7/21/2008 6:42 AM> > > > > >> > > > > >> > > > >> > > >> > > >> > > >> > > >No virus found in this incoming message.> > > >Checked by AVG - http://www.avg.com <http://www.avg.com>> > > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date:> > 7/21/2008 6:42 AM> > > >> > > >> > >> >> > > >> >No virus found in this incoming message.> >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.3/1564 - Release Date: 7/21/2008 6:42 AM> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi Kim. Wow. I heard you loud and clear! The nagging to eat when you don't have an appetite. The need to gain weight, but you eat as much as you can already. The lack of info and direction on getting your o2. I get it. Swallowing meds post BMT was a real issue for me, but has improved over the years. I have found that by doing pulmonary rehab - walking the treadmill (aka the plank) and lifting some weights has really added to my weight and muscle mass. It was very difficult for me at first, but now that I have some muscle I am much more active and can get out and about. I agree with the others to take full advantage of your portable oxygen and get out regularly. I too call it my nose hose...and because I often use humor to deflect negativity I let my friends/family know right away that just b/c I have on my oxygen doesn't make me any less of a hottie....I'm just a hottie with a hose in my nose! :-) (Warning: hottie is a state of mind and may not be reality) All joking aside Kim, the more you get out and live your life to the best of your ability the better you will feel. We have limitations but we do not have to be home bound. I hope you found encouragement in my note. Gotta go for now. Have a great everyone. Will check the board this evening. Jen 37 STL,MO/TX, AML 4/98, BMT 8/98 & 10/98, ARDS 9/99, IPF 8/06 > > Hey everybody; hope all is well *hugs*. > > I saw my lung doctor this afternoon. She said there isn't much to be > done but she wants to try prednisone for two weeks. The other lung > doctors didn't put me on predinsone because they thought it wasn't going > to do anything beneifical for me. I don't know how I am going to go > through with taking this nasty medication. I cannot swallow pills, and > I've had my share of it crushed during my cancer days and it's so > bitter! It is going to be very difficult for me. > > She didn't want to subject me to a open biopsy of my lungs she told us > she didn't want to make me sicker plus the recovery time from that. My > dad wanted me to mention a lung transplant but she also said due to my > weight and whatnot it wouldn't be a possibility. > > She also got me my portable oxygen tank, I use 3 liters with activity; > but she gave me the RX I don't know what to do with it cause I thought > the drs had to call the company and give them the script. Plus she also > added a humidifier to my oxygen at home to ease the bloody noses I've > been getting. Plus a refill on my rescue inhaler. I see her in two weeks > and I get a CT scan beforehand without contrast (woot! arms saved > again). My arms were saved from a artery gas I didn't have to give them > any blood. > > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ > Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to > chemotherapy 06/2008 ~. > Quote Link to comment Share on other sites More sharing options...
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