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HallieMae



Joined: 19 Aug 2007
Posts: 50

Post Posted: Thu Mar 20, 2008 1:52 pm Reply with quote    Back to top    

Hi all, I've been lurking in Huff n Puff with an occasional post now and again. My husband was diagnosed last July with IPF. I'm still trying to learn how to help him take care of himself. He has been complaining forever about a runny nose. He is on the oxygen all the time. The respiratory therapist from the oxygen company was surprised his nose wasn't dry, ???

Another question I had was in regard to oxygen. He started on 02l pulse, continued to work and didn't use it at work (grrr). We got the liquid oxygen container that was easy to carry, and he used it at either 02l or 04l pulse. Then he enrolled in a respiratory rehab program at a nearby rehab hospital approved by our pulmonary doctor, they evaluated him and the day he was to start, the therapist immediately told him he had to be on 6l continuous 24/7, this was after she read his oximeter reading. This meant bringing at least 2 tanks to work, and not really knowing how long they would last, he retired. This therapist also put a "mustache" type cannula on him and hiked up his oxygen to 8l with the mustache for exercises. Recently the therapist from the oxygen company came by with a "medallion" type cannula and had him walk up and down the hall and determined he could set it at 4l continuous since the "stored" oxygen would make up the difference. He had already stopped going to the exercise program so we didn't have any discussion with the therapist there about it. She seems to have the opposite opinion of the use of the mustache or medallion cannula. In October he had the complicated "breathing" tests and a CT Scan. Our pulmonary doctor has scheduled another CTScan next month which I assume will show him how much the disease has progressed.
So, any ideas about the runny nose and any thoughts about his oxygen?
I'd appreciate any help you can give me. Thanks in advance Smile
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prairiecuzz



Joined: 02 Aug 2007
Posts: 303
Location: saskatchewn

Post Posted: Sun Mar 23, 2008 10:51 am Reply with quote    Back to top    

i also had a continuous runny nose when I was diagnosed last may, it isn't anymore, not sure when it stopped but sometime during the cytoxan/prednisone treatment, I have definitely felt better, no longer in bed resting a lot, i get my last of 6 treatments on wed., then pft's and ct to see if it has helped, still mucousy but realize now chocolate, milk, ice cold drinks make it worse. hope he gets some relief, I have kleenex boxes everywhere

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Mary Jo, May 07, uip by olb, saskatchewan
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strayze
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Joined: 22 Dec 2002
Posts: 6466
Location: Maryland

Post Posted: Sun Mar 23, 2008 7:22 pm Reply with quote    Back to top    

I literally drown in clear mucus every day of the year, year after year. It's a darned nuisance, always. The biggest problen is using the oxygen cannula, for it forever gets plugged up, say, every 5 min. I need to remover it, get out the flashlight (if dark out), carefully inspect, and then blow out the tubes, after disconnecting the base of the hose from the O2 tank. Now none of this detracts from my health, but my sanity is tested frequently. I have been knowned to yell " SxxT!!" in a very unladylike old bag way.

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strayze
IPF-UIP by VATS at Hopkins, 8/00
NSIP by VATS review+ new tets, Nat. Jewish 3/04
Severe symptoms 12/99
Dyspnea since '73
ILD by CXRs since '85
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Holly



Joined: 22 Dec 2002
Posts: 2268

Post Posted: Sun Mar 23, 2008 7:26 pm Reply with quote    Back to top    

This is a new thing drug co's should focus on, to bring relief to the many suffers.
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Mac



Joined: 13 May 2005
Posts: 962
Location: New Hampshire

Post Posted: Sun Mar 23, 2008 8:48 pm Reply with quote    Back to top    

Well, once again I have been reinforced concerning a problem I have had since being on O2. My nose runs constantly! I have taken to stuffing Viva paper towels in my pockets (They're softer than most). My nose is (if you can imagine) always dry but constantly runny with clear watery mucus. It's more of a nuisance than a problem but I'd certainly be receptive for a way to turn off the faucet.

Mac

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Old in body but young at heart

Diagnosed IPF 6/2005
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HallieMae



Joined: 19 Aug 2007
Posts: 50

Post Posted: Mon Mar 24, 2008 9:06 am Reply with quote    Back to top    

Thanks for all the replies. Guess there's no solution for it at present. Let's hope they come up with an answer.

Strayze, his is not as bad as yours, just a leaky nose which he had to blow several times a day.
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strayze
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Joined: 22 Dec 2002
Posts: 6466
Location: Maryland

Post Posted: Mon Mar 24, 2008 12:12 pm Reply with quote    Back to top    

There are over the counter meds that dry one up. However, I've never been able to use these as they are anticholinergics drugs, which means that (1) Puts me to sleep so I can contend with narcolepy and anticholinergic sleepiness too, (2) I get the anticholinergic looniness, forget everything I'm doing, etc, etc. (3) My Sjogren's symptoms are intensified but no add'l looniness. For me, 1 and 2 are so serious that I am unable to work, read, think, etc. So I remain like Rudolph the Red Nosed - - - person. Our household expenses on Kleenex are high enough that I should have purchased stock in the company long ago. Around home and yard I save on Kleenex and let it run like a river. Oddly certain actions increase the runniness- - and sneeziness- - - such as eating ice cream or oreos or other similar cookies. I've been tested thoroughly for allergies but Alas!!, there are none.

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strayze
IPF-UIP by VATS at Hopkins, 8/00
NSIP by VATS review+ new tets, Nat. Jewish 3/04
Severe symptoms 12/99
Dyspnea since '73
ILD by CXRs since '85
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JerryX



Joined: 22 Dec 2002
Posts: 114
Location: California

Post Posted: Tue Mar 25, 2008 1:07 am Reply with quote    Back to top    

I had the runny nose problem which was a real pain. I was going through boxes of Kleenex and bottles of nose spray and I had a constant thin watery flow going most of the time. I have never had allergies or hey fever but my wife has always had those problems and she suggested I try taking Chor-Pheniramine. To my surprise I got immediate relief. Now if I take one pill when I get up and another at bedtime. The problem improved about 80%. When I saw my pulmonologist he asked, as usual, if I had any problems with mucus so I told him about the nose drainage and what I was doing for it. He didnít respond right away and you could see the wheels spinning around in his head, but finally he responded. He said he thought maybe I wasnít changing my hoses often enough which I had to agree was true. So, I now continue to take the pills but also pay closer attention to the hoses and also clean my C Pap every weekend. I donít know if this would help anyone else but it seems to be beneficial for me.
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HallieMae



Joined: 19 Aug 2007
Posts: 50

Post Posted: Wed Mar 26, 2008 2:10 pm Reply with quote    Back to top    

JerryX, thanks for the information about what you use. Our pulmonologist prescribed Fluticasone Proprionate but Dick didn't find it helped. We'll ask him about the one you take. Thanks again.

Strayze, when you mentioned what made your problem worse, ice cream, oreo cookies, I noticed that prairiecuzz also had mentioned chocolate, milk and ice cold drinks aggravated her problem too. I'll tell Dick to lay off the ice cream (more for me Laughing ) he's not a big candy eater so the chocolate is not a problem.
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prairiecuzz



Joined: 02 Aug 2007
Posts: 303
Location: saskatchewn

Post Posted: Thu Mar 27, 2008 10:00 am Reply with quote    Back to top    

Yea, but sometime you just got to have it,went to dairyqueen 2 days ago and had a hot fudge sundae, mmm good, coughing mucous an hour later and kicking myself in you know what. I am getting better at substituting my chocolate craves for licorice (not nearly the same). My daughter and I are joining the gym this weekend because I am blowing up like the pilsbury dough boy on this 25 mg of prednisone, also have to take didrical, amytriptyline to sleep, and now a bp pill just because I take prednisone. Maybe if I get the weight down I can get rid of one

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Mary Jo, May 07, uip by olb, saskatchewan
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RC



Joined: 25 Jan 2008
Posts: 340
Location: Los Angeles, California

Post Posted: Thu Mar 27, 2008 11:50 am Reply with quote    Back to top    

I also have the runny nose but more specifically when I remove my cannula. I use Nasonex which is actually a steroid that opens your sinuses with continued use. I also use Astelin which treats allergies. Both are prescription medicines and unfortunately they are a bit pricey depending on your insurance coverage. I've tried them all and these work for me.
My father once told me if your nose runs and your feet smell, there is a good chance you are built upside down.

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IPF/UIP diagnosed
Jul 2007 w lung biopsy VATS
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HallieMae



Joined: 19 Aug 2007
Posts: 50

Post Posted: Thu Mar 27, 2008 1:27 pm Reply with quote    Back to top    

JerryX, I got the medication you use and asked the pharmacist if someone with IPF could take it and she said it was OK so he's going to give it a try, it's an antihistamine.

prairiecuzz, my two favorite candies are chocolate, any kind, and jelly beans. I suppose I could give up chocolate if I could have my jelly beans (sugar city).

RC, your Dad is one funny guy. One of the silly sayings we had when I was a kid (a loong time ago) was "You're a good kid, but your feet stink." We thought that was hilarious.
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Anna



Joined: 16 Feb 2003
Posts: 221
Location: Wild and Wonderful Wales

Post Posted: Thu Mar 27, 2008 2:07 pm Reply with quote    Back to top    

Just when I think I am isolated, and unique in my list of endless symptoms, I get a "verbal" kick in the bum, and revert to feeling normal again...

I've read back through this subject posts, and am AMAZED at the fact that what I was worried about, is actually very normal. And it is SO good to feel normal, even if in an odd sort of way like this!!

Runny nose - yes!
Ice cream and very cold drinks making it worse?
Sugar overload ditto?
Problems sleeping, as coughing and hawking stop me? Etc etc

So - a big thank you to everyone who posted, and helped me lay a few demons to rest - the ones that surface in the small dark hours when the rest of the world seems to be asleep.

I'll continue to take the prescribed medication for the drippy nose - desloratadine 5mg - and try to be good (and avoid causing the heaving coughing and spitting) by following your good examples and laying off the ice cold stuff, chocolate etc. AND - increase my hygiene levels with the O2 tubing, canulas etc.

Whoever it was that said you learn something new every day, got it spot on!!

Thanks, everyone.
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prairiecuzz



Joined: 02 Aug 2007
Posts: 303
Location: saskatchewn

Post Posted: Fri Mar 28, 2008 8:45 pm Reply with quote    Back to top    

yes in our own little group we are normal and that is what makes it so great, i have a hoarse voice most of the time probably from coughing, i tell the world it's my voice now get used it, it would be easier if you could say i have ipf and then not have to take 15 minutes to explain that, sometimes i just say allergies, but here a hnp we are normal to each other and i love it, and need this group

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Mary Jo, May 07, uip by olb, saskatchewan
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strayze
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Joined: 22 Dec 2002
Posts: 6466
Location: Maryland

Post Posted: Sat Mar 29, 2008 1:09 pm Reply with quote    Back to top    

A couple of years back I finally consulted the voice disorders clinic at Hopkins for my persistent hoarseness lasting over 6 mo. To the point of aphonia a few times- - - when there is no voice at all. The doc had a TV hookup to his laryngoscope, the little instrument that goes down the nose to the larynyx (voice box). Each time I visited him we got another look. The vocal chords were white and swollen. I was instructed not to use my voice for anything (pretty hard when one is a professor speaking to an auditorium filled with med students). I used pictures and pointers and mime to get by. I brought in rolls of toilet paper to show what DNA does as it unrolls it's code. All sorts of lecture aids. The rest of the time I whispered or used my whistle. No longer could I shout out obsenities to trucks that ran me off the road. All went well. And each trip my vocal chords looked a bit better. Finally it happened, and I got my voice back.

Perhaps the contestants for the primaries may have to resort to drastic measures to get their voices back.

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strayze
IPF-UIP by VATS at Hopkins, 8/00
NSIP by VATS review+ new tets, Nat. Jewish 3/04
Severe symptoms 12/99
Dyspnea since '73
ILD by CXRs since '85
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