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Sharks1967

Member
Joined
Aug 7, 2012
Messages
24
Reason
PALS
Diagnosis
08/2010
Country
AU
State
Queensland
City
Gold Coast
Hi all, just want to express my frustration with the process of getting a Peg Feeding Tube put in.
I deceided about three weeks ago that it was time to go down the track of getting a feeding tube put in. I was diagnosed just on 2 years ago, 22 Aug 2010 and was determined to not get a feeding tube. Well my swallow has got a lot worse so after I spoke to my Support worker from MND Queensland I went off to my GP to start the process. He wrote me a referral to see a specialist. Unfortunately not having private health insurance I was told it would cost between $2000 to $3000. The other option was to go down the public hospital road and get put on a waiting list which at this stage I'd be looking at late October before it could be done. Probably my own fault to a degree leaving it so long but I really don't think I can go another couple of months. Spoke to my GP again and he's suggested that I just roll up to the emergency department at the local public hospital, get accessed and it will be done basically straight away.
It's been a fairly stressful time, firstly deceiding to get it done, then all the muck around to find a way to get it done as quick as possible, on both me and my wife and family. So Monday morning I'll take myself off to the Tweed Heads Hospital and see how it goes.
After making the decision, which was hard enough, then coming up against these issues hasn't helped the stress levels very much. But I have found one thing that helps reduce stress and that's a couple of beers so I think I'll be having a couple this arvo.

Cheers
Danny
 
So sorry for your PEG run around Danny.
I was in a similar situation. Put it off as long as I could, too long really. Sent an email to my MND team doctor on a Friday afternoon, by Monday at 10 a.m. the appointment was set for Tuesday a week. All went to plan and job was done, with my requested Gastro no less, in the public hospital in 10 days time.
I'm the first to admit that the overnight stay in the general ward was nothing short of diabolical but the medical care was first rate. I am so grateful as the PEG has been a huge help.
I so hope that your one can be placed on Monday and the procedure goes as easily as mine did.
I find rum reduces my stress, more bang per volume than beer. I feel sure you will sort it out for yourself.
All the best mate, do let us know how it goes.
 
Hi Kiwisally,
Yeh fingers crossed for Monday. I'm hoping it all goes off ok, I should have had it done a few months ago but a bit stubborn.
I'm actually quiet partial to the odd rum or six but being predomitly an American site I wasn't sure anyone would know the pleasures of the brown liquid from the square bottle called Bundy or for the kiwi's Capt Morgan!
Danny
 
Spent a bit of time in Bundaberg one year when hubby was doing some work for the distillery. Had a great time and developed an appreciation for the square bottle. ;) Fond memories, thanks for reminding me, I hadn't thought about that in yonks. Now I'm just as happy with the Captain, can't tell the difference in quality when it goes down a tube.
Again, best of luck for Monday.
 
Good luck on Monday, Danny! Hope all goes well for you.
 
Thanks guys for all the well wishes, looking forward to posting a good story next week.
Danny
 
Danny,
We'll be thinking of you and enjoy your captain...

Jen
 
Good luck and we will be thinking of you on Monday. Let us hear from you as soon as you can.
 
Good Luck Danny! Will be thinking of you next week. I hope all goes well!
 
Well..its Monday. Thinking of you tonite Danny. Hope everything went well.
 
Well what a disaster today was. As per my GP said, just roll up to emergency and they'll do the peg. Got to the hospital and after a couple of hours got in to see a doctor. She didn't do a thing apart from writing a referral for a Gastro specialist and the calling and making an appointment for me for next week. She said that they won't do the PEG insertion there unless it's an emergency. I explained that I'm surviving on ice cream, custard and porridge and having heaps of problems getting that down and have lost 15kg in the last 6 months. My wife called to see if she could get an earlier appointment and might be able to get in this week. Even the receptionist at the specialist was surprised they didn't check my hydration levels or put me on an IV to get some fluids into me.
I had myself all hyped up for it this morning then nothing so I'm more then a little upset about it all.
Time to start again from now towards the appointment next week and hopefully will have some better news then.
One good thing is my football team are playing tonight on TV so at least I'll be able to watch the boys go round!

Danny
 
Well Danny, very sorry that didn't go to plan. I'm sure you were disappointed after getting all prepared for today. At least you will be seen by the gastro next week and hopefully you will get up the list and have it done sooner than late October. I certainly hope so. Do let us know what they say next week after you see them. I would stress how much trouble you have drinking and how much trouble you are having staying hydrated.
 
Thanks Kiwisally
Yeh I suppose it's a bit better then late October and I will stress the hydration issue with the doc.
Oh, and thanks for not mentioning the Rugby!
Danny
 
So sorry things didn't work out for you this morning.
Have you checked on the net for tips to aid swallowing? Our archives hold tips for bumping up calories.
Be sure you sit fully upright and tuck your chin toward chest as you swallow. Remember pudding type consistency may be easier to manage. Look for thickening agents to add to liquids at the drug store.
Be careful this week! HOpe things go well for you next week.
 
Thanks Deb, I'll run a search for the tips on swallowing and high calorie stuff. Thanks everyone for all the concern.
 
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