Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 I've been very lucky with my breathing. Even as a Type II, 38 years old and too weak to roll in bed and do many other things... My inhale is actually in the normal range and my exhale is close to normal. > > I was just wondering what your PFT results were for those on NIV or with > a trach? What was your PFTs before that? And how about those not on NIV > or a vent - what are yours if you don't mind sharing? > > I just did mine and the percentage is in the low 20s. I know I am > getting weaker and have very little strength to breath okay when my body > gets too cold or when I try to hurry or under a lot of stress. It helps > to keep it in perspective when I read about your abilities and how you > deal with getting weaker. > > TIA, > Lori in MN with SMA II > > No virus found in this outgoing message. > Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.9.10/1811 - Release Date: 11/25/2008 8:29 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 This might be a dumb question, but what is PFT and what is NIV? I know when talking about bibles, NIV stands for New International Version. Lol Kemp Director, OurGV Rewards <http://www.ourgvrewards.com/> http://www.ourgvrewards.com Phone: 714-974-5799 Business Phone: 714-974-5693 Cell Phone: 714-244-5920 Phone: 949-579-9465 Email 1: d-kemp@... Email 2: dkemp@... <http://www.ourgvmall.com/djk> banner021.jpg <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500> 000-toolbar-banner-1 From: [mailto: ] On Behalf Of Sent: Tuesday, November 25, 2008 1:27 PM Subject: Re: PFT results I've been very lucky with my breathing. Even as a Type II, 38 years old and too weak to roll in bed and do many other things... My inhale is actually in the normal range and my exhale is close to normal. > > I was just wondering what your PFT results were for those on NIV or with > a trach? What was your PFTs before that? And how about those not on NIV > or a vent - what are yours if you don't mind sharing? > > I just did mine and the percentage is in the low 20s. I know I am > getting weaker and have very little strength to breath okay when my body > gets too cold or when I try to hurry or under a lot of stress. It helps > to keep it in perspective when I read about your abilities and how you > deal with getting weaker. > > TIA, > Lori in MN with SMA II > > No virus found in this outgoing message. > Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.9.10/1811 - Release Date: 11/25/2008 8:29 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 I'm not positive on this, but I think PFT stands for " pulmonary function test " and NIV is " noninvasive ventilation. " Bethany In a message dated 11/25/2008 5:25:08 PM Eastern Standard Time, d-kemp@... writes: This might be a dumb question, but what is PFT and what is NIV? I know when talking about bibles, NIV stands for New International Version. Lol Kemp Director, OurGV Rewards <_http://www.ourgvrewhttp://ww_ (http://www.ourgvrewards.com/) > _http://www.ourgvrewhttp://w_ (http://www.ourgvrewards.com/) Phone: 714-974-5799 Business Phone: 714-974-5693 Cell Phone: 714-244-5920 Phone: 949-579-9465 Email 1: _d-kemp@..._ (mailto:d-kemp@...) Email 2: _dkemp@..._ (mailto:dkemp@...) <_http://www.ourgvmalhttp://ww_ (http://www.ourgvmall.com/djk) > banner021.jpg <_http://www.benefitbhttp://www.benefhttp://www.bhttp://www.bhttp://wwwhttp_ (http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500) > 000-toolbar-000-tool From: _@groSMAfrie_ (mailto: ) [mailto:_@groSMAfrie_ (mailto: ) ] On Behalf Of Sent: Tuesday, November 25, 2008 1:27 PM _@groSMAfrie_ (mailto: ) Subject: Re: PFT results I've been very lucky with my breathing. Even as a Type II, 38 years old and too weak to roll in bed and do many other things... My inhale is actually in the normal range and my exhale is close to normal. > > I was just wondering what your PFT results were for those on NIV or with > a trach? What was your PFTs before that? And how about those not on NIV > or a vent - what are yours if you don't mind sharing? > > I just did mine and the percentage is in the low 20s. I know I am > getting weaker and have very little strength to breath okay when my body > gets too cold or when I try to hurry or under a lot of stress. It helps > to keep it in perspective when I read about your abilities and how you > deal with getting weaker. > > TIA, > Lori in MN with SMA II > > No virus found in this outgoing message. > Checked by AVG - _http://www.avg.htt_ (http://www.avg.com/) > Version: 8.0.138 / Virus Database: 270.9.10/1811 - Release Date: 11/25/2008 8:29 AM > [Non-text portions of this message have been removed] **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 5 yrs ago my PFT was 23%, recently, it was 26% - I am not vented at all, type no, no NIV - I remember during my test 5 yrs ago having a " very weak " day and think this may have made it lower... Here's my issue though - I sleep well, have normal blood gases/O2 levels when sleeping but have horrible secretions when I wake. I have attributed this to allergies/asthma and have had this since high school over 11 yrs ago - they seem to get worse when season's change or if I'm in a moist environment or with down feathers (no longer use) as well as with stress (which my allergist said it for sure can make allergies worse). So far nothing has totally helped and only been a temp fix. I removed the down - felt great for a few months, then I got an air purifier, same thing... none of the OTC allergy meds seem to help except benadryl some... inhalers havent helped much for my bad allergy days. Kimi suggested it may be time for bi-pap. She's thinking - and it makes sense, that IF I were on bi pap maybe it would move things more - since 70% of my allergies seem to be when I sleep and wake up after laying in bed (turning helps). I also have changed my diet and go to acupuncture which has helped too, and stress reduction is the major help. My worry with bi pap is if I can do something else first to help, I of course dont want to try it yet because I'm afraid I'll " lose what I have " and then feel worse in the day non assisted. I have no sign of sleep apnea/not getting enough O2 other than I could sleep for forever usually, but ive had that since a child. How does a Dr or person determine when to go to this step? I'm all for it if its time but want to use my options. Ive yet to try allergy shots (I'm allergic to almost everything) so I'm gonna start those soon, and I think a coughliator and good inhaler WITH a spacer (that I wasnt using) could help... I have such non-proactive Drs in an HMO that is in country bumkin land and will not give me what i ask for (like asking to see a pulmo or neuro outside of the plan considering they barely knew about those with disabilities and hadnt even heard of SMA. I am very pro-active but get turned away for better care, and am suffering for it. Ideas? L > > > > I was just wondering what your PFT results were for those on NIV > or with > > a trach? What was your PFTs before that? And how about those not > on NIV > > or a vent - what are yours if you don't mind sharing? > > > > I just did mine and the percentage is in the low 20s. I know I am > > getting weaker and have very little strength to breath okay when > my body > > gets too cold or when I try to hurry or under a lot of stress. It > helps > > to keep it in perspective when I read about your abilities and how > you > > deal with getting weaker. > > > > TIA, > > Lori in MN with SMA II > > > > No virus found in this outgoing message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.138 / Virus Database: 270.9.10/1811 - Release Date: > 11/25/2008 8:29 AM > > > Quote Link to comment Share on other sites More sharing options...
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