Re: A Need to Vent and Inquire...

[Guest guest]

Hi Dale, This disease just advances for apparently just because. The main thing we need to do is to watch our saturation. If you are using 02 during the day you probably need it at night.You will feel much better in the mornings also. Just remember above 90 always.. You will feel the difference in you body when you stay above 90.I would ask about an over night 02 check asap.I am jealous you will be seeing Beth soon. Give her hugs for me and enjoy yourself. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Hello to an incredible group! Most of my posts to date...new since July...have been brief with either questions or a short note of information. Now I need to vent because my condition may be changing sooner than I had hoped, and I had a scary moment in the middle of the night last night when all of a sudden I experienced what it might be like to really not have enough oxygen...I've always been claustrophobic, so that probably has something to do with it. I woke up feeling cold, and a sudden shortness of breath and feeling of not getting enough oxygen kept me awake for a while. I am going to request a nighttime oximeter to make sure I'm getting enough 02 at night...thanks to you, Bruce and, I think, Dennis for encouraging that. I'm also going to start looking at the local 02 vendors, using all the jewels of info gathered from this group. Confirming what I think I've learned from this group, it seems to make sense for me to see what the local 02 providers have available...Lincare is in the area so I assume they'll have the full spectrum available... and then present my list to my pulmo for an Rx, and then take it up with my insurance company if they resist anything. Beth...you might want to save your reply until I...hopefully...see you this weekend, which is now at the top of my list. Thank you! Just 3 weeks ago I was crusing along with good day-time 02, and it had actually gone up from 92 to 94 while on the treadmill and reclining bycicle. Then I missed my regular routine of at least 3 times a week for an hour...getting ready for a week out of town...and only walked the streets or the beach some while gone. I noticed my breathing shorting last week, and yesterday my 02 wouldn't go above 90 while exercising, and the slightest activite drops it below 90, and even below 88 once in a while. Plus, my coughing ruins my appetite...benzonotate hasn't helped much at all... and my morning expectorant has had blood in it for the last several days. That happened once before about 6 weeks ago, but stopped in a few days. Besides the change in my exercise routine, I switched my natural treatment from Serrapeptase (SerraEzyme) to Neprinol (which contains some Serrapeptase), about the same time my 02 started to change. I've ordered more SerraEzyme to see if that makes a difference. Otherwise, even though my pulmo's comments and notes suggested I was in the mild category and no rush to get on the transplant list, I'm now leaning towards keeping my transplant evaluation appointment at Duke in December...encouraged my my insurance case coordinator. My age could become a problem at some poinst (67) but I've otherwise been in good shape, so Duke didn't hesitate to call me to schedule an evaluation. I'm about to call my pulmo with an update, and would appreciate any comments from the board. You really are a great group, and my heart breaks when I read about some of the much more serious problems that so many of you have, especially the old timers...read that however you wish...:-)... who just keep plugging away, venting when they have to, while still unselfishly holding hands with the rest of us. Thank you all and bless you, Dale Snellbaker NC, 67, IPF 7/08  

[Guest guest]

Dale,

First of all, take a deep breath and relax. There are many things that can explain a temporary glitch. Remember that everyone, not just people with an illness everyone has times when they don't feel well. You could be coming down with a cold as Bruce suggested. (I just had strep, an ear infection and early bronchitis so a visit to the doctor may be in order. I didn't feel ill except for an earache. I had no indication of bronchitis). It could be attributable to the change in weather we've had over the last several days or the overall change in seasons. As people with lung disease we are sensitive to changes in air temperature, wind conditions and barometric pressure. It could be allergies affecting the way you feel. There are many possibilities. Too many in fact to push the panic button just yet.

We'll talk about local O2 providers when we get together this weekend. (I'm looking forward to that by the way) Let us know what your pulmo says. You are in my thoughts and prayers!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

A Need to Vent and Inquire...

Hello to an incredible group!

Most of my posts to date...new since July...have been brief with either questions or a short note of information. Now I need to vent because my condition may be changing sooner than I had hoped, and I had a scary moment in the middle of the night last night when all of a sudden I experienced what it might be like to really not have enough oxygen...I've always been claustrophobic, so that probably has something to do with it. I woke up feeling cold, and a sudden shortness of breath and feeling of not getting enough oxygen kept me awake for a while. I am going to request a nighttime oximeter to make sure I'm getting enough 02 at night...thanks to you, Bruce and, I think, Dennis for encouraging that. I'm also going to start looking at the local 02 vendors, using all the jewels of info gathered from this group.

Confirming what I think I've learned from this group, it seems to make sense for me to see what the local 02 providers have available... Lincare is in the area so I assume they'll have the full spectrum available... and then present my list to my pulmo for an Rx, and then take it up with my insurance company if they resist anything. Beth...you might want to save your reply until I...hopefully. ..see you this weekend, which is now at the top of my list. Thank you!

Just 3 weeks ago I was crusing along with good day-time 02, and it had actually gone up from 92 to 94 while on the treadmill and reclining bycicle. Then I missed my regular routine of at least 3 times a week for an hour...getting ready for a week out of town...and only walked the streets or the beach some while gone. I noticed my breathing shorting last week, and yesterday my 02 wouldn't go above 90 while exercising, and the slightest activite drops it below 90, and even below 88 once in a while. Plus, my coughing ruins my appetite...benzonot ate hasn't helped much at all... and my morning expectorant has had blood in it for the last several days. That happened once before about 6 weeks ago, but stopped in a few days.

Besides the change in my exercise routine, I switched my natural treatment from Serrapeptase (SerraEzyme) to Neprinol (which contains some Serrapeptase) , about the same time my 02 started to change. I've ordered more SerraEzyme to see if that makes a difference.

Otherwise, even though my pulmo's comments and notes suggested I was in the mild category and no rush to get on the transplant list, I'm now leaning towards keeping my transplant evaluation appointment at Duke in December...encourag ed my my insurance case coordinator. My age could become a problem at some poinst (67) but I've otherwise been in good shape, so Duke didn't hesitate to call me to schedule an evaluation.

I'm about to call my pulmo with an update, and would appreciate any comments from the board. You really are a great group, and my heart breaks when I read about some of the much more serious problems that so many of you have, especially the old timers...read that however you wish...:-).. . who just keep plugging away, venting when they have to, while still unselfishly holding hands with the rest of us.

Thank you all and bless you,

Dale Snellbaker NC, 67, IPF 7/08