Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 hay bruce! just went and met a lady at my local hospital, as i will be getting my treatment tomorrow for the first time.... got her to do my oxygen sats, and it was 97! she was very very pleased and said i can pop in each week if i want to get them checked! my hubby was a bit cautious about me getting an oximeter just yet as he knows what i am like, and thinks i could obsess over it a bit, which could be a negative thing... if you know what i mean! so i think i am just gunna hold off for my 3months treatment with chemo and see what happens and get them checked each week at the hospital by the pulmonary lady and go from there. bit nervous about treatment, but hay, gotta do it! regards monique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 If you were just standing or sitting you didn't benefit. In fact, what you now know can be very misleading. I'm sitting on the sofa right now with no oxygen at 97%. If I got up and walked 10 feet I'd be below 90%. If I did a six minute walk with no oxygen I'd be in the 70's. Now, if I'm mistaken and she checked you as you did a six minute walk then forget what I just said. However, oxygen at rest versus activity are quite different. I hope yours are fine under exertion and we have many members whose are. But, make sure. As to what your husband said, I'm as obsessive as they come. It's a good thing when it comes to protecting my other organs and my life quality and perhaps length. Some obsessions are bad and some good. You learn moderation. I obsess over looking both ways before crossing a street. I obsess over stopping at stop signs when driving. I obsess over making sure I take my meds when I'm suppose to. Yes, I obsess over making sure my oxygen stays above 90%. I hope your response is that you did a brisk walk for six minutes and were 97%. If so, I am thrilled. I don't know your pulmonary lady, but I'll tell you in many areas here they are only familiar with COPD. Its very different and not nearly the variations you see from PF between sedentary and exertion. > > hay bruce! > just went and met a lady at my local hospital, as i will be getting my > treatment tomorrow for the first time.... got her to do my oxygen sats, > and it was 97! > she was very very pleased and said i can pop in each week if i want to > get them checked! > my hubby was a bit cautious about me getting an oximeter just yet as he > knows what i am like, and thinks i could obsess over it a bit, which > could be a negative thing... if you know what i mean! > so i think i am just gunna hold off for my 3months treatment with chemo > and see what happens and get them checked each week at the hospital by > the pulmonary lady and go from there. > bit nervous about treatment, but hay, gotta do it! > regards monique > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Just jumpin' in here to say 'All the best' with your Chemo treatment....I'll check on you when I get back... Cheers, >> hay bruce!> just went and met a lady at my local hospital, as i will be getting my > treatment tomorrow for the first time.... got her to do my oxygen sats, > and it was 97!> she was very very pleased and said i can pop in each week if i want to > get them checked!> my hubby was a bit cautious about me getting an oximeter just yet as he > knows what i am like, and thinks i could obsess over it a bit, which > could be a negative thing... if you know what i mean!> so i think i am just gunna hold off for my 3months treatment with chemo > and see what happens and get them checked each week at the hospital by > the pulmonary lady and go from there.> bit nervous about treatment, but hay, gotta do it!> regards monique> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Seconding as I omitted saying the best with the chemo. Take care and we'll all be thinking of you. We need you healthy so you can meet and tell us if she's as Scilly as we think.....and (don't let her dare see this part) as wonderful. > > > > hay bruce! > > just went and met a lady at my local hospital, as i will be getting my > > treatment tomorrow for the first time.... got her to do my oxygen > sats, > > and it was 97! > > she was very very pleased and said i can pop in each week if i want to > > get them checked! > > my hubby was a bit cautious about me getting an oximeter just yet as > he > > knows what i am like, and thinks i could obsess over it a bit, which > > could be a negative thing... if you know what i mean! > > so i think i am just gunna hold off for my 3months treatment with > chemo > > and see what happens and get them checked each week at the hospital by > > the pulmonary lady and go from there. > > bit nervous about treatment, but hay, gotta do it! > > regards monique > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 gina! thanks and have an awesome time on norfolk you lucky duck! bruce, your a wealth of information...... your exactly right! i was sitting, she didnt do the walk test and yes she is the copd lady,,,,if thats what its called? how much difference is there? hmmm, lots of thinking about the oximeter, i know exactly what you mean, i think i am going to get one after what you just told me! your a legend! xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 COPD is an obstructive disease while Interstitial Lung Diseases are restrictive. With COPD your airways are obstructed, with ILD's your lungs are damaged. Now, as applies to your saturation being checked there are a couple of significant differences. First, while generations are not always true so can be dangerous. generally PF patients may have a greater difference between oxygen needs sedentary versus under exertion. You may have read Beth's where she is at 2 lpm sleeping and requires 12 lpm with a mask while on the treadmill. I go from 0 to 5 lpm. The ability of our damaged lungs to respond to exertion varies but they certainly have problems with it. The obstruction of allergies or asthma or COPD is the same regardless and while you need more oxygen from your lungs under exertion, the lungs themselves aren't damaged in the same way and are more capable of providing it. Second, with COPD there is danger of " oxygen overdose " . A COPD patient may be shorter of breath than they are of oxygen. Turning up the oxygen can be toxic for them. Too much oxygen can lead to progressive hypercapnia, too much carbon dioxide. While theoretically not impossible with PF, this is extremely unusual and unlikely with PF. Most pulmonologists will tell us not to worry about it. This doesn't mean go to 6 lpm when you only need 2 lpm, but just within reason you may adjust. This means that nurses, respiratory techs, and even oxygen providers who are so use to COPD may give very incorrect information. They might tell a patient not to dare turn up their oxygen without seeing their doctor. My doctor tells me with PF to adjust it to the level required to maintain my saturation. Our pulmonologists depend on us monitoring and apprising them of our changing needs. At one time many were against patient oximeters but that has greatly changed. I've seen four and all four strongly encourage use of oximeter. Do i overdo it? Probably so. But I continue to learn. I got a delivery of a storage bench for my patio this week. It was just a few plastic pieces in a big box and I thought surely I could open and assemble it. Well, I did one piece at 3 lpm and watched my oxygen drop. So, I went and turned the oxygen up and tried the next piece at 4 lpm and it dropped again. I repeated at 5 lpm and watched it quickly go below 90%. Basically I found that it was just a task I couldn't do. The pieces were bigger and heavier and the bending greater than I could handle. It seemed like so little to me and without my oximeter I would have continued and my oxygen would have been in the 70's. As it was, I went down fast but I turned the oxygen up and sat down and recovered quickly and didn't worsen it. Now, what I'm hoping is that you get an oximeter and its a total waste of money and you don't see your oxygen drop below 90% for years and then you fuss at me ten years from now when its finally of use to you. You might wait and do a six minute walk with doctor's oximeter first, but what price safety. I don't have a blood pressure problem but I have a blood pressure machine and check periodically. Why? Well, mine sometimes is higher than normal at the doctor's office as is true with many. Can you imagine how many abnormally high readings they get in ER's? But I know that there is no trend upward by checking at home and realize its the doctor's office effect. We had an officer/owner once who needed below a certain level for officer's and owner's insurance but knowing that when the nurse approached what do you think happened to his already problem blood pressure. Finally she would sit with him in the dark listening to soothing music for thirty minutes and take it. He eventually passed that way. > > gina! thanks and have an awesome time on norfolk you lucky duck! > > bruce, > your a wealth of information...... > your exactly right! > i was sitting, > she didnt do the walk test and yes > she is the copd lady,,,,if thats what its called? how much difference > is there? > > hmmm, lots of thinking about the oximeter, i know exactly what you > mean, i think i am going to get one after what you just told me! > > your a legend! xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 wow! that explains alot, so in lamen terms...... i should get a 6minute walk test.... get an oximeter,,,,,, aim to not be under 90% ??? then will this determine whether or not i need oxygen assistance? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 bruce, i am sorry about all the continuing questions, you dont have to answer if you dont want? I have no idea on what kind of exercise to do or how much to do etc... i have polymyositis too, so i have much muscle wastage and very weak legs, but am 30kilos overweight due to prednisolone and probably adding to it,,, the wrong type of foods at times. i have not seen any physical therapist or anything as of yet, so am very unaware of any of this... thanks once again.... p.s i hope no one gets offended by me just addressing bruce..... you are more than welcome to add ANY help or advice or comments to what i am asking... not trying or meaning to be exclusive.... xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 , I would advise caution in starting an exercise program until your doctor has given you an ok. It's really important to know what your oxygen situation is before you begin any type of strenuous exercise. In the US many of us have been through pulmonary rehabilitation which is a program of supervised, monitored exercise. For me it taught me what I could do and also what my limits were. I don't know if that type of program is easily available to you where you live but I would strongly advise purchasing an oximeter so that you can monitor your saturations while exercising. That said, most of us begin exercising by walking. I try to use the treadmill 5 times a week. When I started in rehab I could only do about 15 minutes at about 1.5mph. It's a matter of beginning and then making it a habit. But please, please, please be cautious about beginning an exercise program before you are certain how your O2 saturations respond to exertion. We want you to be safe!!!! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 Re: o2 levels just measured bruce, i am sorry about all the continuing questions, you dont have to answer if you dont want?I have no idea on what kind of exercise to do or how much to do etc... i have polymyositis too, so i have much muscle wastage and very weak legs, but am 30kilos overweight due to prednisolone and probably adding to it,,, the wrong type of foods at times.i have not seen any physical therapist or anything as of yet, so am very unaware of any of this...thanks once again....p.s i hope no one gets offended by me just addressing bruce..... you are more than welcome to add ANY help or advice or comments to what i am asking... not trying or meaning to be exclusive... . xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 you need to go to pulmonary rehab they will assess your needs, and monitor you as you develop an exercise routine in the meantime, one of the safest and easiest is walking so get a good pair of walking shoes and start walkingPink Joyce IPF 3/06 Pennslvania Subject: Re: o2 levels just measuredTo: Breathe-Support Date: Tuesday, October 7, 2008, 5:59 AM bruce, i am sorry about all the continuing questions, you dont have to answer if you dont want?I have no idea on what kind of exercise to do or how much to do etc... i have polymyositis too, so i have much muscle wastage and very weak legs, but am 30kilos overweight due to prednisolone and probably adding to it,,, the wrong type of foods at times.i have not seen any physical therapist or anything as of yet, so am very unaware of any of this...thanks once again....p.s i hope no one gets offended by me just addressing bruce..... you are more than welcome to add ANY help or advice or comments to what i am asking... not trying or meaning to be exclusive... . xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Thats basically it. Under 90% = bad. Over 90% = good. > > wow! > that explains alot, so in lamen terms...... > i should > get a 6minute walk test.... > get an oximeter,,,,,, > aim to not be under 90% ??? > > then will this determine whether or not i need oxygen assistance? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 I love the continuing questions. They are part of what makes this place the pleasure for me that it is. Now, I would strongly recommend some form of rehab for you, where they can professionally put together the perfect program for your combination. As someone possibly with polymyositis, I know that physical therapy is recommended for it with a program designed for your level and changing over time. For PF, respiratory rehab is recommended with a program designed for you. Yes, your muscles are weak and your lungs are weak and you're less capable and you need it even more. I picture a program not too different than that MB described or what I saw at rehab. You probably would do treadmill or similar machines such as rowers or skiers. Mostly at home we have treadmills while the rehabs have much more. In addition you would do some small hand weights and some leg weights. You would do stretching before any of the exercises. Again they would be designed within your capacity to help you maintain as much as you can. Breathing exercises are also good. In a rehab session, the work is spread out generally over 2 to 2 1/2 hours or so with breaks for education and rest. At home most do up to an hour. Treadmill is generally 45 min to 60 min and up to 4 or 5 times a week. Weights would also be around every other day or 4-5 times. You'll be amazed how even the exercise you're capable of (and its more than you think) will help you day to day. You'll notice the difference when you miss it. Over time you'll maintain better. The weight can be worked on with the exercise and diet but is difficult with prednisone. Generally you want to work to avoid diabetes so diabetic type diets are good even if you don't have it. Sugars are the enemy. Each pound lost are additional pound avoided will make day to day life easier. This rather simple daily program needs to become part of your life. Even as the diseases progress you'll still be able to do some exercise and benefit from it. > > bruce, > i am sorry about all the continuing questions, you dont have to answer > if you dont want? > > I have no idea on what kind of exercise to do or how much to do etc... > i have polymyositis too, so i have much muscle wastage and very weak > legs, but am 30kilos overweight due to prednisolone and probably adding > to it,,, the wrong type of foods at times. > > i have not seen any physical therapist or anything as of yet, so am > very unaware of any of this... > thanks once again.... > > p.s > i hope no one gets offended by me just addressing bruce..... you are > more than welcome to add ANY help or advice or comments to what i am > asking... not trying or meaning to be exclusive.... xx > Quote Link to comment Share on other sites More sharing options...
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