OT (Somewhat) -- Update

Having a neuromuscular disease has compromised my diaphragm muscles requiring ventilation at night with the Trilogy 100 ventilator (most of you know this). The breathing difficulties began in the summer of 2009, but I also had a nasty cold/flu thing that turned to pneumonia in the spring of 2008.

I get a flu shot every year, but haven't gotten it yet this year because I usually wait for my 6-month check up with my PCP, unless I see my pulmonary doctor at the right time of year, but I saw her too early this year.

I am kicking myself like crazy for not running to my PCP for a flu shot the second my daughter got sick, but I didn't. My husband has it full blown right now and I'm just getting started with scratchy/sore throat, running nose, achy joints and drainage. This started yesterday morning.

I called my PCP and they said I can't get the flu shot at this point. While this feels like it could be a flu of sort, my PCP's office claims that flu season hasn't started and because of it, they aren't treating flu. Oh brother -- she suggested I contact my pulmonary doctor and I have a call into them at this point.

I have always gotten really sick whenever I get a cold or anything, but the flu shot has been fabulous at minimizing it. I am worried that with my compromised breathing situation, this is going to turn very ugly very quickly.

Do any of you experts have any suggestions on what I CAN do at this point to try to minimize how sick I DO get?

I wish I had some helpful advice, Madalot, but .... I don't. *sigh*

Except for others who are concerned, our local pharmacy and Walgreens in town are both offering flu shots right now. They are self-pay, but, while I don't know about Walgreens, our local pharmacy will help w/the Medicare direct billing if you are a Medicare patient.

(((hugs))) and best wishes to you, Madalot!!!!

Take good care of yourself. Extra vitamins, hot baths, lots of sleep, chicken soup, extra humidity.

However I did all that and still got bronchitis/pneumonia last February. Actually my cpap machine made living through it much easier.

Just stay very aware of what your body is doing. There is something that they give for the flu TamiFlu (?) Get in touch with your pulmonologist immediately. And if you feel you are getting worse don't tough it out - go to emergency.

BlackSpinner wrote:Take good care of yourself. Extra vitamins, hot baths, lots of sleep, chicken soup, extra humidity.

However I did all that and still got bronchitis/pneumonia last February. Actually my cpap machine made living through it much easier.

Just stay very aware of what your body is doing. There is something that they give for the flu TamiFlu (?) Get in touch with your pulmonologist immediately. And if you feel you are getting worse don't tough it out - go to emergency.

Thanks for the input, BlackSpinner. Unfortunately, the ventilator doesn't have any humidity. I asked about it and was told that you don't need it. I also can't do baths because I can't get in/out of a bathtub! I wish I could. But I can do the rest of it -- chicken soup, liquids, etc.

I have a call into my pulmonologist now, and I also have a message into the RT at my DME just to see if she has any suggestions.

I'm a little annoyed at my PCP because I was wondering about the flu medication as well. They took the stance that flu season doesn't start around here until January so it's not the flu. Based on how sick my daughter was and what my husband sounds like, it sure looks like the flu to me!! I'm hoping my pulmonologist will be a little more helpful, but she doesn't work on Mondays! Yikes!!

Hi Madalot

I am sorry to hear of your dilemma.

My only (lay) suggestion is that your do everything you can to keep your immune system as healthy as possible, plus I would be taking plenty of vitamin C.

A couple of links to more information. There are a number of paths that may help you -

http://www.google.com.au/search?q=the+i ... =firefox-a

http://www.google.com.au/search?q=stren ... =firefox-a

If you have trouble with stress, post details, as stress will diminish the effectiveness of the immune system.

So relax, minimise stress, and do what you can (as I know you will) .

Good luck

Mars

At the pharmacies they have steam humidifiers. They make a huge difference when you have a cold/flu and are pretty cheap.
From personal experience - if you have wall paper keep an eye on it - mine started coming lose when I had it on day and night one time when I had a bad bout of bronchitis.

Just who decided you didn't need a humidifier?

BlackSpinner wrote:At the pharmacies they have steam humidifiers. They make a huge difference when you have a cold/flu and are pretty cheap.
From personal experience - if you have wall paper keep an eye on it - mine started coming lose when I had it on day and night one time when I had a bad bout of bronchitis.

Actually, I think I have one in the basement!! Great idea...thanks!!!

BlackSpinner wrote:Just who decided you didn't need a humidifier?

The DME/RT. The ventilator doesn't have an add-on option for one. Something CAN be added, I think, but it's not like it is with the cpap/bipaps -- not as common I don't think.

As stated by Slinky Walgreens offers self pay flu shots. Wal Mart too offers flu shots and they accept insurance cards. However a flu shot takes about a month in the system to become fully effective.

Laura

OceanGoingGal wrote:As stated by Slinky Walgreens offers self pay flu shots. Wal Mart too offers flu shots and they accept insurance cards. However a flu shot takes about a month in the system to become fully effective.

Laura

I appreciate the input, Laura. My doctor's office claims that you shouldn't get the flu shot if you have cold/flu symptoms. My pulmonologist's office just called me and they are sending my pulmonologist a message to get in touch with me as quickly as possible.

I appreciate the input! I figured it wouldn't hurt to ask a few people here what they thought.

Kathy, I am so sorry that you are not feeling well. We are definitely in flu season, although it's not starting out to be as bad as last year. It will be mostly over by January.

http://www.vdh.virginia.gov/epidemiolog ... Report.pdf

OutaSync wrote:Kathy, I am so sorry that you are not feeling well. We are definitely in flu season, although it's not starting out to be as bad as last year. It will be mostly over by January.

http://www.vdh.virginia.gov/epidemiolog ... Report.pdf

This is what I was thinking too, and even if the flu isn't widespread, it doesn't mean a person CAN'T have it.

Even before the neuromuscular disease compromised my breathing at night, colds were never minor for me. I ALWAYS got really nasty ones with serious congestion, coughing, the works. My husband and family usually get over them within 10-14 days, but I am usually sick for 6-8 WEEKS. I started getting the flu shot AFTER I got pneumonia and it helped a lot. I haven't been really sick since the spring of 2008. Minor colds, yes, but the nasty stuff I usually get, not since then.

But since I haven't had the flu shot yet, I'm concerned, especially knowing that my breathing is compromised at all.

Madalot wrote: I appreciate the input, Laura. My doctor's office claims that you shouldn't get the flu shot if you have cold/flu symptoms. .

They are right and it doesn't really work for about 2 weeks too. (or that is the contagion window where if you have been exposed you are going to get it anyway regardless of your shot) so if you had got the shot when your daughter came down with it you could still have gotten sick. So you can stop beating yourself up over this and just go with the flow.

BlackSpinner wrote:

Madalot wrote: I appreciate the input, Laura. My doctor's office claims that you shouldn't get the flu shot if you have cold/flu symptoms. .

They are right and it doesn't really work for about 2 weeks too. (or that is the contagion window where if you have been exposed you are going to get it anyway regardless of your shot) so if you had got the shot when your daughter came down with it you could still have gotten sick. So you can stop beating yourself up over this and just go with the flow.

Thanks for this, BlackSpinner. I still probably should have made a point of getting it earlier in the month anyway, but I have a regular PCP appointment in November and was going to get it at that point.

But it helps to hear that I should stop trying to kick my own backside!!

Sorry to here you are getting sick. When I am sick I take zinc tablets along with vitamin c and that seems to help. I believe that zinc helps build up the immune system. I find it funny that just because it is not "Flu season" that your PCP thinks that you can't get the Flu.

I've used a separate Fisher & Paykel HC150 heated humidifier for years.
https://www.cpap.com/productpage/fisher ... ifier.html

Can be used with any machine. I like that stand-alone humidifier better than any integrated humidifier I've used with various cpap/autopap/bilevel machines.

There are two openings on top of this humidifier's water chamber. Main air hose from the cpap machine attaches to one opening and the short connector hose (comes with the humidifier) connects the humidifier to the cpap machine. Very simple.

I don't put any credence at all in the DME/RT's opinion that "you don't need it."
But given your complicated medical issues, there might be a reason why extra humidification wouldn't be a good idea for you. I doubt it, but there's always that chance. Do check with your pulmonologist.