Hello again

Chat about anything you like... Fed up with the state of the world today? Tell us!
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Bob1955
Posts: 321
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Hello again

Post by Bob1955 » Thu Oct 03, 2019 6:00 am

Well nothing to report on the panc side of things, but my cystic fibrosis has taken a big hit on me the last 18 months or so, I am now on oxygen 24/7 and struggle to get upstairs, I have a large oxy converter in bedroom which I am hooked up to at night and another in the living room for day use, I have a dewar ( liquid oxy) which I can fill a flask from for going out with and a different smaller portable one that is a electronic backup, also have a large bottle as hone backup...everything is backed up...lol
So ai have gone from being able to walk no problem to only able to walk small distances before i need to sit, it is a bit of a nightmare to be honest.
I fibd it uncomfortable with people staring and feel my personality has changed a lot. I am hopeless around the house because I can do little to help, I become desaturated very quickly and any exertion makes me struggle for breath, I am now on lorazepram, oramorph morphine and mst continus morphine pills, meant to help my breathing...not for pain, was in hozzy last week and am now home doing home iv's, most of my day is either taking meds, thinkibg about meds or doing airway clearance to try keep my lungs clear as pissible, my lung function last month was 46% ...that is down a little, but, it never goes up, it will dontinue to get worse, that is the nature of the beast, the new cf drugs now freely available in Scotland was fantastic news, but sadly my gene type does not match those required for these new drugs, I have been told a new one is due out in march and I need to hold on until then as these new obes are a defo to help me, my consultant said I would be top of the list.as long as there is no squabbling about money ..fingers crossed.
Now, you mostly all will remember Tam who had a whipple or similar op, he got through it I believe tho was quit unwell, has he been on ?...did he overcome his illness...did he make it?...I really hope he is doing all right, tho his lack of posts worries me, hope you are all pain free and doing great, it is a long hard road for all chronically ill people and it can bring you to the very depths of your " Whats the point" stage. Stay strong mentally if you cannot stay physically strong.

Bob.

paul 28
Posts: 307
Joined: Mon Aug 27, 2018 4:02 pm

Re: Hello again

Post by paul 28 » Thu Oct 03, 2019 6:46 am

Sorry to hear of your problems getting worse but good to see your name on here again but lets hope new drugs turn up sooner than expected ,Shame it all comes down to money .

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maz
Posts: 7645
Joined: Fri Jan 01, 2010 11:29 am
Location: Harrogate, UK.

Re: Hello again

Post by maz » Thu Oct 03, 2019 8:53 am

Hi Bob. I will say welcome back, but really I am sorry to read how things have been going for you and what you have been dealing with. One thing I am glad about is that your pancreas has been behaving. I have heard great things about this new drug for CF, you keep on keeping on, and be as well as you can till you can start them next year.

As far as Tam goes he hasn't been on here for a while. I hope that means he is doing well and enjoying his life. People tend to come back when something isn't going so well, though I wish they would pop by occasionally as I would like to know how past members are doing every now and then. I do seem to remember a post from him saying things were going well. The forum was hit with a big spam attack a little while ago which managed to wipe off about a year's posts, so people can't look back to posts within that time scale. I just went to look for Tam's post, but it is obviously in the deleted ones. However his profile says was online here at the beginning of September, so that is good. His screen name is tamdiana and the last posts to see from him are back in 2014. I do wonder if some past members come on and see some of their posts deleted and think it has been done on purpose, so just leave :(

You are so right about it being a hard road for people with chronic illnesses. I wish there was more that could be done for everyone.
Marilyn

Bob1955
Posts: 321
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Hello again

Post by Bob1955 » Fri Oct 04, 2019 12:50 am

I seen the spam attack or was it a ddos attack, whatever...just another idiot with nothing better to do.

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maz
Posts: 7645
Joined: Fri Jan 01, 2010 11:29 am
Location: Harrogate, UK.

Re: Hello again

Post by maz » Fri Oct 04, 2019 9:22 am

I guess we will never know who or why, just have to live with the outcome :cry: .
Marilyn

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Janey Dal
Posts: 9931
Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Hello again

Post by Janey Dal » Sat Oct 05, 2019 12:18 pm

Hi Bob

Sorry to hear you have not been so well. It really is a tough world at times!

It's good to hear that Tam has at least been on so must be okay. It always makes me a bit sad when people disappear but I always hope that, as Marilyn says, its because they don't need the support any more which must be a good thing.

Hugs for you

Jane xx

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MikeyB
Posts: 2976
Joined: Sat Apr 30, 2016 6:48 pm
Location: Ribble Valley, Lancashire

Re: Hello again

Post by MikeyB » Tue Oct 15, 2019 11:19 am

Hi Bob, welcome back. I had been wondering where you were hiding.

Sorry to hear the bad news. But you can make your life easier - you can apply for a stairlift, 80% paid for, if you apply to the local council. And have a look at electric wheelchairs, which can have oxygen bottle carriers appended so you can get out and about. It’s good your lung function is more or less holding up. That’ll keep you going till the new drugs arrive.

You’ve been playing the cards you’ve been dealt for 60 odd years. New game, new rules.

Fingers crossed, best of luck.

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Janey Dal
Posts: 9931
Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Hello again

Post by Janey Dal » Sat Oct 19, 2019 12:49 pm

Hear, hear!

Hugs

Jane xx

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