Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 it is Jo again and I have additional questions. and some answers also. Corvallis, OR where I live is home to Oregon State University, 50 miles away is Eugene which is home to University of Oregon and 80 some miles in Portland is Oregon Health University and a couple of hundred miles is Seattle where there is a site at the University of Washington. So resources are good. Here the cardiac surgeon does the biopsy and I do not have any details but probably wouldn't understand the details anyway. I feel sort of powerless about this whole thing and so don't want to spend a lot of time head banging. So here is my main question. This one is tough for me to even put down but.... I have not been contacted about scheduling a biopsy and they (doctors) say I need one to determine treatment. Therefore no treatment has been started. Does this apparent lack of urgency mean that treatment isn't going to do that much anyway so no rush? If that is true then why have the biopsy anyway? If treatment is effect why haven't we started already? Don't mean to be a wet blanket but things just don't seem to add up here. I don't know what NAC is. Also my husband is interested in my getting a scooter. Since my sats drop to 85 almost instantly with any exertion he thinks a scooter would be great. What do you think. I guess the doc would have to request it. When I travel any distance the sats drop so do you up the oxygen before you go or wait until they are up then raise it? Our neighbor has an oximeter she had loaned to us. It is a nice one and I don't want to lose it so I ordered on for $65 to travel around with. What do you think of that? I read about the VATS and doesn't sound like day surgery. I was told day surgery so apparently it isn't VATS. Yesterday after napping my legs hurt so I took Ibuprofin and I felt much better all over the rest of the day. Is that okay?? I figure whatever works? Right? I love you all already and we have just begun. Thank you and thank you for sharing and thank you being here and thank you for everything else. I'm so sorry we had to meet this way but surely there is good here and more. Jo A little afraid. I feel so stupid to be afraid at my age but none the less I do. Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Hi Jo, I do understand the part of being afraid and fear of the unknown. Jo, you need to stay on top of your care, ask, ask, ask questions and get clarifications to the stuff you don't understand. I'm sure some of the people will have the answers to your questions, feel free to ask anything. We're a wonderfull group! I've been through a lot myself in the past month...on the other hand we need to stay strong and keep hoping the one of this days we won't have to suffer! Let me introduce myself, my name is Irene. I was diagnosed with PF in 03/07. I was rushed to the hospital with shorthness of breath and high blood pressure and emergency CT Scan was done. I learned the PF diagnosis, when I was given the discharge papers. In 09/07, I was diagnosed with Raynaud's Disease, circulation stops in my fingers and it feels like someone is strangulating them. I have Crohn's Disease 03/95, it's an inflammation of the small intestine (terminal ileum), which most of the time I cannot digest any food. In the past month I've lost 26 pounds and I'm continuing to lose weight due to not eating. I tried eating, I get these severe kniffing stabbing pains which makes it impossible for me to eat and enjoy the foods which I like so much. At the moment I'm facing surgery which they will go in and remove some of my intestine(Small Bowel ressection). As to the reason why I'm facing surgery it was due to the lack of incompetence of a nurse at the hospital. ---- Original Message ---- To: Breathe-Support Sent: Sat, 23 Feb 2008 10:11 am Subject: treatment it is Jo again and I have additional questions. and some answers also. Corvallis, OR where I live is home to Oregon State University, 50 miles away is Eugene which is home to University of Oregon and 80 some miles in Portland is Oregon Health University and a couple of hundred miles is Seattle where there is a site at the University of Washington. So resources are good. Here the cardiac surgeon does the biopsy and I do not have any details but probably wouldn't understand the details anyway. I feel sort of powerless about this whole thing and so don't want to spend a lot of time head banging. So here is my main question. This one is tough for me to even put down but.... I have not been contacted about scheduling a biopsy and they (doctors) say I need one to determine treatment. Therefore no treatment has been started. Does this apparent lack of urgency mean that treatment isn't going to do that much anyway so no rush? If that is true then why have the biopsy anyway? If treatment is effect why haven't we started already? Don't mean to be a wet blanket but things just don't seem to add up here. I don't know what NAC is. Also my husband is interested in my getting a scooter. Since my sats drop to 85 almost instantly with any exertion he thinks a scooter would be great. What do you think. I guess the doc would have to request it. When I travel any distance the sats drop so do you up the oxygen before you go or wait until they are up then raise it? Our neighbor has an oximeter she had loaned to us. It is a nice one and I don't want to lose it so I ordered on for $65 to travel around with. What do you think of that? I read about the VATS and doesn't sound like day surgery. I was told day surgery so apparently it isn't VATS. Yesterday after napping my legs hurt so I took Ibuprofin and I felt much better all over the rest of the day. Is that okay?? I figure whatever works? Right? I love you all already and we have just begun. Thank you and thank you for sharing and thank you being here and thank you for everything else. I'm so sorry we had to meet this way but surely there is good here and more. Jo A little afraid. I feel so stupid to be afraid at my age but none the less I do. Jo Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Those are all excellent questions and even if they weren't never hesitate to ask. Yes, you are fortunate to have access to good facilities. If its a VATS, I would want it done by a Thoracic surgeon with much experience at VATS. Many surgeons are both Heart and Lungs, but if they are almost all heart, I wouldn't choose them personally. Also, if they are almost all heart, understand while in the hospital you will be their least serious patient and may find yourself treated that way. Why do a VATS? Ask the doctor why they are advising. One reason is to be sure of the form if that is going to change your treatment. So discuss treatments before the surgery. The main decision is prednisone. So if you're going to use the same treatment regardless, then there is less need for a VATS. For me, I used it to decide not to try prednisone. Another is your own personal need to know. Another is that it may be required for clinical trials or transplants. But VATS is an invasive surgery where the standard now is to remove three pieces of your lung. It is not a procedure without risks of pain and problems. Do a search here and read about experiences of VATS. I did elect it. Many do, some don't. You make your own choice. As to how quickly a VATS: Two factors, when you're ready and sure. That said the sooner the better because the stronger your lungs the better. As to a scooter, I'm getting a new vehicle and have already talked to the stores about lifts and scooters or power chairs. I intend to get a lift soon, buy a cheap used scooter for now, later get good power chair when needed. Why the lift now? Well, to get the $1000 toward it by the auto manufacturer and to not pay sales tax on the vehicle which could be $1000-1500. Now medicare and some insurances will only pay for a scooter or lift when you need it to get around indoors. They don't care about you being able to get out. Also, scooters are slightly better outdoors, although power chairs have improved, but power chairs are better indoors because of much smaller turning radius. I don't see a lot of use of scooters and power chairs on this board and I think its because of cost and the fact that if you don't have a fully automatic lift system, they're a lot of trouble. I intend to use one short term for major things like Disneyworld or the zoo which would require extreme levels of walking. But I also know the day will come in which the only way to comfortably get out and go place will be with one. NAC is N-acetyl Cysteine. It's sold in liquid form in pharmacies if you can find it and smells like rotten eggs. It's sold in tablet form by some compounding pharmacies. It's sold as a health food product by health food and vitamin suppliers. Just be careful you stop taking Ibuprofen a couple of weeks before surgery as it can possibly affect normal blood clotting. I think ordering your own oximeter is great. Look what you learned borrowing your neighbor's. Without it you would not have known how your oxygen was dropping under the circumstances. The most important thing you can do is use enough oxygen to keep your sats above 90. This protects all your other organs. > > it is Jo again and I have additional questions. and some answers > also. Corvallis, OR where I live is home to Oregon State University, > 50 miles away is Eugene which is home to University of Oregon and 80 > some miles in Portland is Oregon Health University and a couple of > hundred miles is Seattle where there is a site at the University of > Washington. So resources are good. > > Here the cardiac surgeon does the biopsy and I do not have any details > but probably wouldn't understand the details anyway. I feel sort of > powerless about this whole thing and so don't want to spend a lot of > time head banging. > > So here is my main question. This one is tough for me to even put > down but.... I have not been contacted about scheduling a biopsy and > they (doctors) say I need one to determine treatment. Therefore no > treatment has been started. Does this apparent lack of urgency mean > that treatment isn't going to do that much anyway so no rush? If that > is true then why have the biopsy anyway? If treatment is effect why > haven't we started already? Don't mean to be a wet blanket but things > just don't seem to add up here. > > I don't know what NAC is. Also my husband is interested in my getting > a scooter. Since my sats drop to 85 almost instantly with any > exertion he thinks a scooter would be great. What do you think. I > guess the doc would have to request it. > > When I travel any distance the sats drop so do you up the oxygen > before you go or wait until they are up then raise it? Our neighbor > has an oximeter she had loaned to us. It is a nice one and I don't > want to lose it so I ordered on for $65 to travel around with. What > do you think of that? > > I read about the VATS and doesn't sound like day surgery. I was told > day surgery so apparently it isn't VATS. > > Yesterday after napping my legs hurt so I took Ibuprofin and I felt > much better all over the rest of the day. Is that okay?? I figure > whatever works? Right? > > I love you all already and we have just begun. Thank you and thank > you for sharing and thank you being here and thank you for everything > else. I'm so sorry we had to meet this way but surely there is good > here and more. Jo A little afraid. I feel so stupid to be afraid at > my age but none the less I do. Jo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Bruce... I told Jo I knew you would respond to her post. You are so much more knowledgeable than I. Have a good weekend. Mama-Sher, 69, IPF 3-06, OR.Don't fret about tomorrow, God is already there! Re: treatment Those are all excellent questions and even if they weren't neverhesitate to ask.Yes, you are fortunate to have access to good facilities.If its a VATS, I would want it done by a Thoracic surgeon with muchexperience at VATS. Many surgeons are both Heart and Lungs, but if theyare almost all heart, I wouldn't choose them personally. Also, if theyare almost all heart, understand while in the hospital you will be theirleast serious patient and may find yourself treated that way.Why do a VATS? Ask the doctor why they are advising. One reason is to besure of the form if that is going to change your treatment. So discusstreatments before the surgery. The main decision is prednisone. So ifyou're going to use the same treatment regardless, then there is lessneed for a VATS. For me, I used it to decide not to try prednisone.Another is your own personal need to know. Another is that it may berequired for clinical trials or transplants. But VATS is an invasivesurgery where the standard now is to remove three pieces of your lung.It is not a procedure without risks of pain and problems. Do a searchhere and read about experiences of VATS. I did elect it. Many do, somedon't. You make your own choice.As to how quickly a VATS: Two factors, when you're ready and sure. Thatsaid the sooner the better because the stronger your lungs the better.As to a scooter, I'm getting a new vehicle and have already talked tothe stores about lifts and scooters or power chairs. I intend to get alift soon, buy a cheap used scooter for now, later get good power chairwhen needed. Why the lift now? Well, to get the $1000 toward it by theauto manufacturer and to not pay sales tax on the vehicle which could be$1000-1500. Now medicare and some insurances will only pay for ascooter or lift when you need it to get around indoors. They don't careabout you being able to get out. Also, scooters are slightly betteroutdoors, although power chairs have improved, but power chairs arebetter indoors because of much smaller turning radius. I don't see a lotof use of scooters and power chairs on this board and I think itsbecause of cost and the fact that if you don't have a fully automaticlift system, they're a lot of trouble. I intend to use one short termfor major things like Disneyworld or the zoo which would require extremelevels of walking. But I also know the day will come in which the onlyway to comfortably get out and go place will be with one.NAC is N-acetyl Cysteine. It's sold in liquid form in pharmacies if youcan find it and smells like rotten eggs. It's sold in tablet form bysome compounding pharmacies. It's sold as a health food product byhealth food and vitamin suppliers.Just be careful you stop taking Ibuprofen a couple of weeks beforesurgery as it can possibly affect normal blood clotting.I think ordering your own oximeter is great. Look what you learnedborrowing your neighbor's. Without it you would not have known how youroxygen was dropping under the circumstances. The most important thingyou can do is use enough oxygen to keep your sats above 90. Thisprotects all your other organs.>> it is Jo again and I have additional questions. and some answers> also. Corvallis, OR where I live is home to Oregon State University,> 50 miles away is Eugene which is home to University of Oregon and 80> some miles in Portland is Oregon Health University and a couple of> hundred miles is Seattle where there is a site at the University of> Washington. So resources are good.>> Here the cardiac surgeon does the biopsy and I do not have any details> but probably wouldn't understand the details anyway. I feel sort of> powerless about this whole thing and so don't want to spend a lot of> time head banging.>> So here is my main question. This one is tough for me to even put> down but.... I have not been contacted about scheduling a biopsy and> they (doctors) say I need one to determine treatment. Therefore no> treatment has been started. Does this apparent lack of urgency mean> that treatment isn't going to do that much anyway so no rush? If that> is true then why have the biopsy anyway? If treatment is effect why> haven't we started already? Don't mean to be a wet blanket but things> just don't seem to add up here.>> I don't know what NAC is. Also my husband is interested in my getting> a scooter. Since my sats drop to 85 almost instantly with any> exertion he thinks a scooter would be great. What do you think. I> guess the doc would have to request it.>> When I travel any distance the sats drop so do you up the oxygen> before you go or wait until they are up then raise it? Our neighbor> has an oximeter she had loaned to us. It is a nice one and I don't> want to lose it so I ordered on for $65 to travel around with. What> do you think of that?>> I read about the VATS and doesn't sound like day surgery. I was told> day surgery so apparently it isn't VATS.>> Yesterday after napping my legs hurt so I took Ibuprofin and I felt> much better all over the rest of the day. Is that okay?? I figure> whatever works? Right?>> I love you all already and we have just begun. Thank you and thank> you for sharing and thank you being here and thank you for everything> else. I'm so sorry we had to meet this way but surely there is good> here and more. Jo A little afraid. I feel so stupid to be afraid at> my age but none the less I do. Jo> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Sher I have no more knowledge than you, just different. And she can certainly learn more from you about the hospital you go to and the doctors there and your experiences. > > > > it is Jo again and I have additional questions. and some answers > > also. Corvallis, OR where I live is home to Oregon State University, > > 50 miles away is Eugene which is home to University of Oregon and 80 > > some miles in Portland is Oregon Health University and a couple of > > hundred miles is Seattle where there is a site at the University of > > Washington. So resources are good. > > > > Here the cardiac surgeon does the biopsy and I do not have any details > > but probably wouldn't understand the details anyway. I feel sort of > > powerless about this whole thing and so don't want to spend a lot of > > time head banging. > > > > So here is my main question. This one is tough for me to even put > > down but.... I have not been contacted about scheduling a biopsy and > > they (doctors) say I need one to determine treatment. Therefore no > > treatment has been started. Does this apparent lack of urgency mean > > that treatment isn't going to do that much anyway so no rush? If that > > is true then why have the biopsy anyway? If treatment is effect why > > haven't we started already? Don't mean to be a wet blanket but things > > just don't seem to add up here. > > > > I don't know what NAC is. Also my husband is interested in my getting > > a scooter. Since my sats drop to 85 almost instantly with any > > exertion he thinks a scooter would be great. What do you think. I > > guess the doc would have to request it. > > > > When I travel any distance the sats drop so do you up the oxygen > > before you go or wait until they are up then raise it? Our neighbor > > has an oximeter she had loaned to us. It is a nice one and I don't > > want to lose it so I ordered on for $65 to travel around with. What > > do you think of that? > > > > I read about the VATS and doesn't sound like day surgery. I was told > > day surgery so apparently it isn't VATS. > > > > Yesterday after napping my legs hurt so I took Ibuprofin and I felt > > much better all over the rest of the day. Is that okay?? I figure > > whatever works? Right? > > > > I love you all already and we have just begun. Thank you and thank > > you for sharing and thank you being here and thank you for everything > > else. I'm so sorry we had to meet this way but surely there is good > > here and more. Jo A little afraid. I feel so stupid to be afraid at > > my age but none the less I do. Jo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Bruce... I'm hoping Jo may use OHSU. I go there and we may be able to meet. Are you feeling ok???? Mama-Sher, 69, IPF 3-06, OR.Don't fret about tomorrow, God is already there! Re: treatment SherI have no more knowledge than you, just different. And she can certainly learn more from you about the hospital you go to and the doctors there and your experiences.> >> > it is Jo again and I have additional questions. and some answers> > also. Corvallis, OR where I live is home to Oregon State University,> > 50 miles away is Eugene which is home to University of Oregon and 80> > some miles in Portland is Oregon Health University and a couple of> > hundred miles is Seattle where there is a site at the University of> > Washington. So resources are good.> >> > Here the cardiac surgeon does the biopsy and I do not have any details> > but probably wouldn't understand the details anyway. I feel sort of> > powerless about this whole thing and so don't want to spend a lot of> > time head banging.> >> > So here is my main question. This one is tough for me to even put> > down but.... I have not been contacted about scheduling a biopsy and> > they (doctors) say I need one to determine treatment. Therefore no> > treatment has been started. Does this apparent lack of urgency mean> > that treatment isn't going to do that much anyway so no rush? If that> > is true then why have the biopsy anyway? If treatment is effect why> > haven't we started already? Don't mean to be a wet blanket but things> > just don't seem to add up here.> >> > I don't know what NAC is. Also my husband is interested in my getting> > a scooter. Since my sats drop to 85 almost instantly with any> > exertion he thinks a scooter would be great. What do you think. I> > guess the doc would have to request it.> >> > When I travel any distance the sats drop so do you up the oxygen> > before you go or wait until they are up then raise it? Our neighbor> > has an oximeter she had loaned to us. It is a nice one and I don't> > want to lose it so I ordered on for $65 to travel around with. What> > do you think of that?> >> > I read about the VATS and doesn't sound like day surgery. I was told> > day surgery so apparently it isn't VATS.> >> > Yesterday after napping my legs hurt so I took Ibuprofin and I felt> > much better all over the rest of the day. Is that okay?? I figure> > whatever works? Right?> >> > I love you all already and we have just begun. Thank you and thank> > you for sharing and thank you being here and thank you for everything> > else. I'm so sorry we had to meet this way but surely there is good> > here and more. Jo A little afraid. I feel so stupid to be afraid at> > my age but none the less I do. Jo> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Sher Yes, I'm feeling fine. Have had to turn my flow up a bit the last day or so. Don't know if its congestion or deterioration or what, but feeling fine. Was out and about earlier today and now taking a break. As also pretty active yesterday so may just be a little tired. I've found that affects the needed liter flow too. How are you doing now that you're fueled up? Any luck on getting portables yet? > > > > > > it is Jo again and I have additional questions. and some answers > > > also. Corvallis, OR where I live is home to Oregon State > University, > > > 50 miles away is Eugene which is home to University of Oregon > and 80 > > > some miles in Portland is Oregon Health University and a couple > of > > > hundred miles is Seattle where there is a site at the > University of > > > Washington. So resources are good. > > > > > > Here the cardiac surgeon does the biopsy and I do not have any > details > > > but probably wouldn't understand the details anyway. I feel > sort of > > > powerless about this whole thing and so don't want to spend a > lot of > > > time head banging. > > > > > > So here is my main question. This one is tough for me to even > put > > > down but.... I have not been contacted about scheduling a > biopsy and > > > they (doctors) say I need one to determine treatment. Therefore > no > > > treatment has been started. Does this apparent lack of urgency > mean > > > that treatment isn't going to do that much anyway so no rush? > If that > > > is true then why have the biopsy anyway? If treatment is effect > why > > > haven't we started already? Don't mean to be a wet blanket but > things > > > just don't seem to add up here. > > > > > > I don't know what NAC is. Also my husband is interested in my > getting > > > a scooter. Since my sats drop to 85 almost instantly with any > > > exertion he thinks a scooter would be great. What do you think. > I > > > guess the doc would have to request it. > > > > > > When I travel any distance the sats drop so do you up the oxygen > > > before you go or wait until they are up then raise it? Our > neighbor > > > has an oximeter she had loaned to us. It is a nice one and I > don't > > > want to lose it so I ordered on for $65 to travel around with. > What > > > do you think of that? > > > > > > I read about the VATS and doesn't sound like day surgery. I was > told > > > day surgery so apparently it isn't VATS. > > > > > > Yesterday after napping my legs hurt so I took Ibuprofin and I > felt > > > much better all over the rest of the day. Is that okay?? I > figure > > > whatever works? Right? > > > > > > I love you all already and we have just begun. Thank you and > thank > > > you for sharing and thank you being here and thank you for > everything > > > else. I'm so sorry we had to meet this way but surely there is > good > > > here and more. Jo A little afraid. I feel so stupid to be > afraid at > > > my age but none the less I do. Jo > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Jo, I haven't officially welcomed you..so Welcome!!!! You have a perfect right to be upset. confused and anything else! The physicians ask for a biopsy to "nail down" a diagnosis...P F or not PF. auto-immune or not auto immune.etc. There is no cure for PF but there are many forms of treatment that may work to stave off the symptoms for many people..The problem is that no one knows what works for which people! The basic medical community is often less knowlegable than this group!!! The lung specialists try to throw everything they can at us! Take your time, research here and where ever, ask loads of questions and don't let anyone tell you what to do without giving you an explanation that satisfies you.It's your body and your life. You should have someone with you at appointments...our ears just don't get all the information at one sitting. Be sure that you also get copies of every test result every time!!!!They are yours, demand them if needed. Try not to panic, we have all felt as you do now. We "get it"..your family may take a while, just live your life to the fullest you can. One of our very smart members has said" there's no expiration date stamped on my butt". That's a good way to deal on a day to day basis. I'm 64, diagnosed with a form of PF called NSIP..it's been 2 1/2 years .. My symptoms have gotten less severe, the medications ( and there are so many) have gotten less and I'm stable. I've been here to witness the births of two grand daughters One is now 26 months and the really new one is 4 days old!!!I'm blessed to be here. I am on oxygen 24/7...usually 3 lpm . I go out evey day..now to help with the new beautiful Sara and to meet friends and family. I had to stop working but I've not stopped living. My normal day is different than it used to be but it's a"new normal". I'll take it!!! Please feel free to say anything, rant, hoiller, laugh, and cry..we'll be here! I found this group almost 1 year into this disease and I'm so grateful. It's supportive in every possible way and never judgemental! Have a good week-end. Z fibriotic NSIP/05 Z 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 JO wrote: it is Jo again and I have additional questions. and some answers also. Corvallis, OR where I live is home to Oregon State University, 50 miles away is Eugene which is home to University of Oregon and 80 some miles in Portland is Oregon Health University and a couple of hundred miles is Seattle where there is a site at the University of Washington. So resources are good. Here the cardiac surgeon does the biopsy and I do not have any details but probably wouldn't understand the details anyway. I feel sort of powerless about this whole thing and so don't want to spend a lot of time head banging. So here is my main question. This one is tough for me to even put down but.... I have not been contacted about scheduling a biopsy and they (doctors) say I need one to determine treatment. Therefore no treatment has been started. Does this apparent lack of urgency mean that treatment isn't going to do that much anyway so no rush? If that is true then why have the biopsy anyway? If treatment is effect why haven't we started already? Don't mean to be a wet blanket but things just don't seem to add up here. I don't know what NAC is. Also my husband is interested in my getting a scooter. Since my sats drop to 85 almost instantly with any exertion he thinks a scooter would be great. What do you think. I guess the doc would have to request it. When I travel any distance the sats drop so do you up the oxygen before you go or wait until they are up then raise it? Our neighbor has an oximeter she had loaned to us. It is a nice one and I don't want to lose it so I ordered on for $65 to travel around with. What do you think of that? I read about the VATS and doesn't sound like day surgery. I was told day surgery so apparently it isn't VATS. Yesterday after napping my legs hurt so I took Ibuprofin and I felt much better all over the rest of the day. Is that okay?? I figure whatever works? Right? I love you all already and we have just begun. Thank you and thank you for sharing and thank you being here and thank you for everything else. I'm so sorry we had to meet this way but surely there is good here and more. Jo A little afraid. I feel so stupid to be afraid at my age but none the less I do. Jo No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.9/1294 - Release Date: 2/22/2008 6:39 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Jo, Don't wait for the docs to call you. You have to manage your own healthcare. Get copies of all reports and tests. It is amazing how much you understand when reading over them in the quietness of your home with the computer there to interpret. This disease can not be ignored. You have to move faster than it does. I would not think a $65 oximeter would be reliable. Take it with you to the docs office and check out the reading against thiers. NAC is N-Acetylcystiene. It comes in liquid form as a prescription and as a supplement in pill form. Most docs advise taking it for fibrosis. It has other advantages also. Take care, Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 I will not forget you...Behold, I have engraved you on the palms of my hands. Isaiah 49:15-16 >> it is Jo again and I have additional questions. and some answers> also. Corvallis, OR where I live is home to Oregon State University,> 50 miles away is Eugene which is home to University of Oregon and 80> some miles in Portland is Oregon Health University and a couple of> hundred miles is Seattle where there is a site at the University of> Washington. So resources are good. > > Here the cardiac surgeon does the biopsy and I do not have any details> but probably wouldn't understand the details anyway. I feel sort of> powerless about this whole thing and so don't want to spend a lot of> time head banging.> > So here is my main question. This one is tough for me to even put> down but.... I have not been contacted about scheduling a biopsy and> they (doctors) say I need one to determine treatment. Therefore no> treatment has been started. Does this apparent lack of urgency mean> that treatment isn't going to do that much anyway so no rush? If that> is true then why have the biopsy anyway? If treatment is effect why> haven't we started already? Don't mean to be a wet blanket but things> just don't seem to add up here. > > I don't know what NAC is. Also my husband is interested in my getting> a scooter. Since my sats drop to 85 almost instantly with any> exertion he thinks a scooter would be great. What do you think. I> guess the doc would have to request it. > > When I travel any distance the sats drop so do you up the oxygen> before you go or wait until they are up then raise it? Our neighbor> has an oximeter she had loaned to us. It is a nice one and I don't> want to lose it so I ordered on for $65 to travel around with. What> do you think of that?> > I read about the VATS and doesn't sound like day surgery. I was told> day surgery so apparently it isn't VATS.> > Yesterday after napping my legs hurt so I took Ibuprofin and I felt> much better all over the rest of the day. Is that okay?? I figure> whatever works? Right?> > I love you all already and we have just begun. Thank you and thank> you for sharing and thank you being here and thank you for everything> else. I'm so sorry we had to meet this way but surely there is good> here and more. Jo A little afraid. I feel so stupid to be afraid at> my age but none the less I do. Jo> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Joyce $65 Oximeter. Actually its certified by the FDA to the same general reliability as the Nonin 9500 and others. The issue is more likely to be the durability of it as the casing and springs and even mechanisms may not last as long. Now checking against the doctors is always good. However, the doctor's oximeter also has +/-2% as the general tolerance. The oximeters to avoid definitely are those that are not FDA approved. They are sold strictly for exercise and not considered medical devices and haven't been through the testing. Now would I prefer everyone have $250 oximeters, absolutely. But do I think a $65 is better than none? Yes. And at the least it will show changes under differing conditions. So I agree with your advice to compare to the doctor's. But the one I did reference was one I was careful had been FDA approved as there are dozens out there which have not. As to getting all records, learn from me. I didn't before this disease. I had two radiologist reports from CT's showing I had ILD that no one ever said anything about, although they did talk about the swollen lymph nodes and send me to an oncologist. But four doctors had access and none said a thing. > > > > it is Jo again and I have additional questions. and some answers > > also. Corvallis, OR where I live is home to Oregon State University, > > 50 miles away is Eugene which is home to University of Oregon and 80 > > some miles in Portland is Oregon Health University and a couple of > > hundred miles is Seattle where there is a site at the University of > > Washington. So resources are good. > > > > Here the cardiac surgeon does the biopsy and I do not have any details > > but probably wouldn't understand the details anyway. I feel sort of > > powerless about this whole thing and so don't want to spend a lot of > > time head banging. > > > > So here is my main question. This one is tough for me to even put > > down but.... I have not been contacted about scheduling a biopsy and > > they (doctors) say I need one to determine treatment. Therefore no > > treatment has been started. Does this apparent lack of urgency mean > > that treatment isn't going to do that much anyway so no rush? If that > > is true then why have the biopsy anyway? If treatment is effect why > > haven't we started already? Don't mean to be a wet blanket but things > > just don't seem to add up here. > > > > I don't know what NAC is. Also my husband is interested in my getting > > a scooter. Since my sats drop to 85 almost instantly with any > > exertion he thinks a scooter would be great. What do you think. I > > guess the doc would have to request it. > > > > When I travel any distance the sats drop so do you up the oxygen > > before you go or wait until they are up then raise it? Our neighbor > > has an oximeter she had loaned to us. It is a nice one and I don't > > want to lose it so I ordered on for $65 to travel around with. What > > do you think of that? > > > > I read about the VATS and doesn't sound like day surgery. I was told > > day surgery so apparently it isn't VATS. > > > > Yesterday after napping my legs hurt so I took Ibuprofin and I felt > > much better all over the rest of the day. Is that okay?? I figure > > whatever works? Right? > > > > I love you all already and we have just begun. Thank you and thank > > you for sharing and thank you being here and thank you for everything > > else. I'm so sorry we had to meet this way but surely there is good > > here and more. Jo A little afraid. I feel so stupid to be afraid at > > my age but none the less I do. Jo > > > Quote Link to comment Share on other sites More sharing options...
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