The last comments for
First Day Out of the Hospital...
This post could have not come at a better time! I am a 25yfwcf and to this day I still fight with myself...
May 24, 2022 07:57:50 Jump to
Its great time for me to offer Review to your site, I am simply visiting your site on the web and should...
February 29, 2020 10:37:09 Jump to
The last comments for
We are urgently in need of KlDNEY donors with the sum of $500,000.00 USD (3 crore) and Also In Foreign...
October 27, 2019 15:21:03 Jump to
The last comments for
Thanks for updating the information. Stress is a feeling of emotional or physical tension and it will...
July 22, 2019 06:08:59 Jump to
The last comments for
How to deal best with failure and stress
While reading this article, I found stress management is very difficult for failures and they face some...
July 22, 2019 04:57:54 Jump to
Comments by IntenseDebate
Logging you in... Sort by: Date Rating Last Activity
Comments by IntenseDebate
Reply as a Guest, or login:
Go back
Connected as (Logout)
Not displayed publicly.
Connected as (Logout)
Not displayed publicly.
Posting anonymously.
Posts
Piper · 800 weeks ago
1) Remind you that it's not actually all that uncommon for PFTs to get worse before they get better. Obviously you're not giving up and you're still going strong, but I think it's always worth hearing that sometimes these things happen and it doesn't spell disaster. I know for me my PFTs don't improve for about 2 weeks (sometimes longer) on IVs, largely b/c I'm moving around so much gunk that it all sort of moves into my upper airways and actually pushes my numbers down. Then suddenly they'll pop back up in a BIG way -- and this happens to me frequently.
2) Check your cultures for synergy -- maybe the abx combo you're using has lost some of its effectiveness?
3) Make sure you're inhaling as much HTS as possible. Yeah, that one kinda sucks I know, but for me I always use the stuff at least 3 times a day because it is SO good at hydrating the airways and helping to make me cough.
4) Is one of your meds leaving you feeling "tight" or could you be having an asthma-like reaction to something in the hospital? This is a long shot, but some meds/smells/chemicals/etc can cause restriction in airways and then PFTs will go down.
and finally, 5) Have you tried/considered the dreaded prednisone burst (cue scary music)? You might find it works wonders in terms of opening you up enough to get that air moving and the junk up and OUT so that your "windbags" can come back stronger than ever. It will also help you appreciate those yummy snacks even more ;)
Good luck -- thinking of you dude!
Piper
RunSickboyRun 96p · 800 weeks ago
2) Did you know that they're shutting down the synergies lab in NY? They say that synergies don't help all that much. Crazy!
3 )I'm doing it twice a day in here. Maybe I can ask for 3?
4) That could be a possibility. I moved to a new room and my symptoms have increased since the move!
5) I HATE prednisone, but I have a feeling that's what I need. My lungs feel SUPER inflamed.
Thank you SOOOOOOOO much Piper! Means a lot to me that you would take the time to write this stuff out :)
Ronnie
Piper · 800 weeks ago
As to #2, they were thinking about shutting down the lab, but the CFF just renewed funding with specific criteria for who could get cultures (i.e., you have to meet certain FEV1 and infection criteria). Apparently synergy testing is really only valuable in target populations, not necessarily CFers overall. But you're right, my doctor often says that even though certain synergies are "better" in the lab, patients often respond well to their familiar, "staple" combination anyway. So synergy testing does have limited value -- I just know the lab is still up and running b/c it happens to be affiliated with my hospital up here. They have a website listing the criteria for submitting samples.
If your throat can take it, 3 HTS treatments certainly can't hurt! And as for the pred, I hate it too (see the multiple posts dedicated to hating prednisone on my blog ;)) but if you're in the joint already you could ask for solumederol (the IV form). It's brutal, but it also does the job of pred in about 2 days, so no long taper. Seriously every time they put me on the IV steroids I show immediate improvement.
BTW, that's super interesting about the room change and symptoms increase. I would talk to your doc about that for sure -- CF lungs are SO sensitive to environmental irritants. I always have to leave my hospital room for an hour after they clean it b/c the chemicals will make me tight for days.
Kat East · 800 weeks ago
Best,
Kat
jamiebug · 800 weeks ago
Lisa · 800 weeks ago
Gillian · 800 weeks ago