Pneumonia Frequency

[VivienandMe]

Hello friends,

Mum is in hospital again with a 3rd bought of pneumonia. The last one was only 2 weeks ago. She on meds again to clear it up and hopefully she'll be feeling better and home in time for Christmas.

I wondered if having a PEG might reduce the frequency of the pneumonia bouts but the consultant says that it is just as likely to reoccur due to her poor swallow of saliva. In view of that we're still reluctant to stop her food as she get a lot of please out of her meals and snacks.

So we are left wondering if the pneumonia will really be this frequent going forward? I had imagined that she might go many months between bouts rather than a matter of weeks. Does anyone else have any experience of this happening so frequently?

We've been told that the more times she is treated, the less effective the meds will become. I'm not sure what that means in terms of time and I guess even if I asked there wouldn't be an answer.

Taking each day as it comes, but thoughts of whether this will be our last Christmas with her are never far away.

Louise xx

[Kevin_1]

Hi Louise

I would stay with the doctors on this one. They see this everyday.

Do you know what your Mum would have wanted regarding repeated intravenious antibiotics?

Wishing you both the best

Kevin

[VivienandMe in reply to Kevin_1]

Thank you Kevin.

We're only really seeing the A&E doctors when she's admitted. It's difficult to know who is really there to take a longer term view on things beyond the immediate pneumonia bout. There seems to be lots of people milling around on the periphery of her care (Parkinsons nurse, District Nurse, SALT nurse, GP....) but no real one really feels like they are there to talk to about things.

Mum is well enough to talk pretty well and she has no dementia so she can make her own decisions. We do need to revisit the DNR conversation with her but it's so upsetting for her and us. Everytime I try to talk about it I just can't get the words out and we all end up in floods of tears.

Thanks, Louise

[Kevin_1 in reply to VivienandMe]

Gosh, it's hard on you all.

I do wish you well with this.

Warmly

Kevin

[kenh1]

My wife had ng tube instead of peg. No further cases of pneumonia and no more antibiotics. My own theory was that the tube helped the saliva flow down to the stomach. But as Kevin says it is best to stay with the doctors.

[AnneandChris]

Louise

It's hard isn't it!

Chris came off antibiotics on Tuesday morning but was back on them again by Thursday as he had again aspirated. He doesn't want a PEG and has both an advanced decision in place and a DNAR. He is having injections to help dry out the secretions in his lungs.

So from his experience I can only assume that these bouts will become more frequent until the inevitable happens. As you say with Christmas ten days away....

My thoughts are with you

Hugs

Anne

[VivienandMe in reply to AnneandChris]

Thank you Anne. It is so helpful to know other people’s experiences. I might ask about the injections as that hasn’t been mentioned.

Merry Christmas

Louise

[Railfan]

There are drugs available that will dry up much of the saliva and mucus issues should you decide in favor of the PEG. However, they are not 100 percent effective and she may still get aspiration pneumonia.

[VivienandMe in reply to Railfan]

Hi,

I’m going to mention this to the hospital and GP. Do you know what the drug is called. Don’t worry if not as hopefully they will.

Thanks for the info, much appreciated.

Louise

[Railfan in reply to VivienandMe]

For drooling/saliva 2 that I remember mentioned are amitriptyline and scopolamine. Scopolamine has a patch to wear I believe.

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Recently my best friend lost her dad. She repeatedly stated that she was so glad he had make his end of life wishes very clear to her & her brother. There was no second guessing what he wanted & did not want. Most importantly there was no arguing within the family. I know the talk is hard... it is so hard... Sending gentle hugs... Granni B