Introduction

[matthew55]

Hello John, I have Bulbar onset and I had my PEG fitted a couple of weeks ago while I was still fit enough for the simple operation. I have had no pain and no painkillers since the op and I sleep like a baby. I can still swallow but eating is painful and stressful so I'm sticking to the PEG which I syringe. The hardest part is getting used to it but that passes quickly. Living on my own means I am very jealous of you but I will try and deal with it along with everything else. Stay Strong x

[jd58]

Hi Denise. I use mine for meds only at present because a. they don.t taste nice and b. one is very sticky so sticks in my throat. I am still eating blended foods like big soups and weetabix with hot milk for breakfast. I also on two medical milk shakes a day.... The tube insertion went very well took 20 mins under local. stayed in overnight. Has liquid paracetamol for pain relief which worked. I pulled my stitches getting out of bed so i had one night in pain before the stitches came out. Everything fine now thanks.

[denise]

hi John
its nice to hear from you but think the circumstances could be better . i would really like to hear how you get on with the feeding tube as my husband is due to have one. if anyone else can add to this information it would be great to hear from you. my husbands treatment has been held up due to the virus but i am hoping it will all be back on track soon. xxx

[Ellie]

Hi John.

Any joy with improving your air humidity? Hope you're not still waking up with Sahara mouth

Love Ellie.

[jd58]

Yes will check it tonight i read in the manual that a climateair line is best to improve humidity if using a humidifier. I'll enquire about one on Monday.

[Ellie]

That's disappointing John, I wouldn't last 2hrs without a humidifier!! It can take a few different settings before landing on the ideal one.

Is it working as it should - can you check if the water is definitely getting warm? Is the humidifier integral to the NIV or separate?

[jd58]

added a humidifier to the ventilator did not notice much difference still awoke at 5am with a very dry throat? setting I put at setting 5 and after 6 hours solid sleep.

[Deb]

Hi John,

I just wanted to say a warm welcome to the forum from me. It's a great place for friendship and support from people who really understand. It sounds like you're really proactive in getting a feeding tube and it's good you managed a good sleep with your NIV.

Enjoy your fishing and take care,
Love Debbie x

[Barry52]

Hi John,

Well done for catching those perch. When I was a boy my dad took me perch fishing in the Lake District and we used live minnows for bait. I believe this is now banned. Sign of the times we live in.

Best wishes,

Barry

[Ellie]

Great that your first night using BiPAP / NIV / ventilator went so well for you John and that you got good benefit from it.

If there are any Covid-19 patients on your ward, I hope they're well away from you with dedicated staff!!!

Stay safe.

Love Ellie.

[jd58]

Thanks for all the good wishes. I picked up a resmed ventilator yesterday to use at night. I wore it throughout the night and got a good nights sleep and made a difference to my breathing today. I went fishing with a friend for 3 hours to a local pond and I caught 3 perch - takes me back to when i was a lad. Had my preop yesterday too. The say i have isolate for 14 days before and take a covid test the week before, I will spend a night on the respiratory ward with maybe some covid patents at the other end because of my ventilator.

[miranda]

Welcome John. I’ve had a PEG for several years but still manage a soft food diet and only use the tube for meds and extra water. Hope it all goes well.

[Lynne K]

Hi John, welcome to our forums. It is hard in the beginning to accept this horrid disease but going for the feeding tube early shows that you are a courageous rational man. Mathew on here is getting a feeding tube soon too so you’ll have things to chat about. Others are very well versed in it. It’s good that you have a wife and two daughters there for you. Sounds like you are surrounded in love and laughter. My husband is here with me and my youngest daughter lives a 15 minute drive away. She always brings joy with her. We often have a laugh.

Nice to hear from you. Take care, Lynne

[Magpie]

Hallo, John, I'm a newbie here too!

[bilvers]

Welcome! Andy