Post Number: 207
|Posted on Friday, January 20, 2012 - 01:03 pm: ||
Today was cystic fibrosis clinic.
I was taken in my wheelchair by my sister. Ive ad a tough time since October with a nasty virus, so gettin around is pretty tough. I was on countless antibiotics for 6weeks during the christmas period ,had a four week break, and started iv antibiotics again today.
One major thing that hasnt improved since october is my oxygen levels. Im feeling very anxious about this. imagine my shock today when i arrived at clinic and my oxygen levels were 54% wen they first checked my saturations YIKES! i have never seen this number before and it petrified me.
My sats have never been great but always in the high 80s, early nineties. I put on oxygen straight away and they shot up to 92,obviously i need to get my head round wearin oxygen 24 7. i could get away with it afew months ago....not now
I suppose im writing this to ask if anyone ever saw these kind of numbers themselves before? and just lookin for answers as to why they have dropped so dramatically in 3months. Ive asked my doctors who think ive had a hard hit from my virus. Will they ever rise?
Ive gone from seein friends without needin oxygen, to being very uncomfortable without it. I feel like my heart and lungs are aching if that makes sense?
|Nicola/25/ England/Cystic Fibrosis/ on the waiting list for new lungs.|
Post Number: 17045
|Posted on Friday, January 20, 2012 - 01:10 pm: ||
Sorry you are not feeling well. From the photos you shared you look like the picture of health. I would wear the o2 and follow the doctors orders. You want to stay in the best shape for tx.
From what I remember my lowest o2 for CF lungs were in the Seventies. I felt awful at that number.
Thank you for sharing. Take good care of yourself
Post Number: 4
|Posted on Friday, January 20, 2012 - 01:20 pm: ||
I'm sorry to hear you are having such a rough time. But, I also wanted to tell you that I went thru a similar situation the last few months. I don't know if you remember me...I'm on once in a while...but I do read a lot of the posts. I have Bronchiolitis Obliterans. I got a cold right after Halloween and I just went downhill fast from there. My O2 levels never dropped like yours...the lowest they go is in the mid 80's but generally I'm in the mid to low 90's. But, by Christmas, my FEV1 had gone down to 17%! I was in a bad place...couldn't even shower without sitting down. I was put on Oxygen at home. The Dr's couldn't figure out if I had a tough pneumonia or my disease had gotten worse. They changed my meds. Now since January I am feeling so much better. I haven't needed to use the oxygen during the day (only at night...dr wants me to sleep w/it) and I'm able to move around so much easier now. I don't get breathless so quick.
Anyway...after that long story, I want to say, that you could just be fighting a very resistant virus and b/c your body is already weaker than the norm, you are getting hit hard. Just try to rest, rest, rest. Don't go outside in the cold weather. Give your body a good break. I wish you the best. I will say a prayer for you.
Post Number: 499
|Posted on Friday, January 20, 2012 - 10:35 pm: ||
What you describe is not uncommon. This is why anyone who uses supplemental oxygen must have a pulse oximeter with them all the time. We are not able to tell when our saturation falls into the 80's, 70's, and even lower. In the same respect, we may also feel very short of breath when our saturation is in the mid 90's. You cannot sense what your SpO2 is at any time, though some believe they are different and can tell.
Nowadays, you can buy a finger oximeter for around $20, so there is no excuse for not having one. Not only do you need to check when you're not wearing your oxygen, but also to make sure your flow rate is correct. If you normally use 2L and then notice that your sats drop into the 80's or lower, you must turn the flow up until you're back in the 90's.
This is a constant topic on the respiratory forums, and the consensus is always to keep turning it up if your sats drop below 90.
BTW, by the time I got my lungs, I needed 10 liters at a minimum whenever I walked anywhere, even to the bathroom.
Post Number: 5309
|Posted on Saturday, January 21, 2012 - 08:22 pm: ||
I have gotten my butt back on Buddies!! I know we have connected via Facebook.
I am so sorry that your horrid winter cold has taken such a toll. I would definitely wear your O2. It will help your body feel better. When your O2 levels are that low your body is working sooooo hard. You need to give it a break so that you can recover.
Rest lots, wear your O2, eat healthy, and get better - that's an order!!
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Be kinder than necessary because everyone you meet is fighting some kind of battle.
Post Number: 49
|Posted on Monday, January 23, 2012 - 06:27 pm: ||
I think you'll bounce back from this. I have had that kind of winter and was soooooo surprised to finally bounce back. Keep in mind,of course, that low sats not only cause shortness of breath but also lots of anxiety.
Use your oxygen and try to relax and tell yourself you'll be feeling better soon.
I'll be pulling for you and hope you keep us posted.
Post Number: 4
|Posted on Tuesday, January 24, 2012 - 12:59 am: ||
I can remember pre transplant having the same issues where if I was sitting still my sats would hover between 85 to 90 but then as soon I would move about would drop like a hot spud down to the 60's so i know how your feeling. This was about the time (approx 6 months before my eventual transplant) that I started o2 24 hrs round the clock and I felt that it really helped to stabilize me whilst waiting, I can remember also being petrified of having those prongs in my nose as I was always adamant that CF would never get me, but I soon learned that I just had to readjust my mentality to what was happening inside of me. Hopefully your wait isnt too long and you have a nice set of healthy airbags really soon.