Fibrosis : Has anyone got fibrosis and... - Lung Conditions C...

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Fibrosis

Time_2_drink profile image
13 Replies

Has anyone got fibrosis and how do you deal with it please feel like I been given a sentence finding hard to cope

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Time_2_drink profile image
Time_2_drink
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13 Replies
newlands profile image
newlands

Oh bless you someone will come along who knows more

Dorothy xx

sassy59 profile image
sassy59

Lots of people have fibrosis as does Pete. The hospital will sort you out and you will do better. You have a good future ahead of you. Xxxxxx

Time_2_drink profile image
Time_2_drink in reply tosassy59

Thank you sassy it is just another nail I'm feeling so low thought CopD was enough to cope with xx

sassy59 profile image
sassy59 in reply toTime_2_drink

You will get there T2d and l am so pleased you are getting the help you need.

Sending lots of gentle hugs. Xxxx 🐰

Billiejean_2 profile image
Billiejean_2

Hi T2, glad to hear you finally made it to the hospital and hope you are started on your IVs. Who gave you the diagnosis of fibrosis and how did they make the diagnosis ? While you are there make sure to get the answers you need from the doctors who diagnosed you. If you don't feel up to it, get your husband to arrange a meeting. You need to know, how your condition will be treated, what to expect when you go home and what aftercare you will need. Ask for written information and exact directions about what meds you need to take, how often etc. Please let them know how difficult things have been at home and how you and your husband need some support from the health service. Stay strong T2 and don't panic, things may not be as bad as you think they are. Give the IVs a chance to kick in. {{{{ big hugs }}}}}

Time_2_drink profile image
Time_2_drink in reply toBilliejean_2

Hi Had a chest X-ray at 1am last night then today had a CT scan seen Doctor and was given a print out about fibrosis Been having problems with I'v Drip but then again you probably know by now that nothing is straightforward where I'm concerned finally got drip on this morning then it came out so put vanilla in other hand this happened again so when I went for ct scan they put one in there .Back on ward it was decided I was being moved to other ward respiratory fine got there in goes cannula attach drip once again comes out take me of it so now 24 hours after admition still waiting for abs IV could you make it up oh yes 3 hours ago I asked for my painkillers invisible who me x

Billiejean_2 profile image
Billiejean_2 in reply toTime_2_drink

Sounds frustrating and infuriating. Hang on in there T2, hopefully they'll get their act together soon.

Time_2_drink profile image
Time_2_drink in reply toBilliejean_2

Watch out for next episode lol x

Toci profile image
Toci

(((HUGS))) x

Clamdigger profile image
Clamdigger

I was diagnosed but they said mine didn't spread but I have to have another CT scan.... What type is it I know there are three types.... I try not to think about things to much just deal with things as they come.

SquirrelsHolt profile image
SquirrelsHolt

Hello dear Time_2_drink I've not seen a recent post from you since you were in hospital and waiting for a CT Scan? I remember lots of people on this forum were asking about you and still are!! Ooh to be so popular,lol.

Hope you are on the mend and will contact us all as soon as you feel able.

Regards. X.

dall05 profile image
dall05

My advice T2d as a fellow pulmonary fibrosis sufferer is to keep moving and exercise as much as you are comfortable with. If your on oxygen find out through an oxygen assessment how much oxygen you need at rest and how much when on the move. These can vary considerably but if used correctly can make quite a difference to your mobility and breathlessness. I vary from 6 to 15 liters now but used to be 0 to 4 litres 7 years ago.

This is a condition that you can live with if its managed correctly, you just have to slow your life down to suit :) . xxx

NOSMO profile image
NOSMO in reply todall05

I HAVE HAD FIBROSIS FOR 16 MONTHS NOT SURE WHICH TYPE YET.DOCTOR SAYS TESTS DONT TELL THEM SO MONITORED EVERY 3 MONTHS HAD ALL THE TESTS I AM 80 SO NOT REALLY SAFE FOR INVASIVE TEST EVEN WITH KEYHOLE SURGERY.YOU SEEM TO HAVE HAD IT A LONG TIME NOONE HAS SAID HOW LONG .I DONT NEED OXYGEN YET CAN DO MOST THINGS TO LOK AFTER MYSELF JUST CANNOT WALK MUCH AT ALL NOWYET 16 MONTHS AGO COULD DO 1800 YDS EASY.ANY ADVISE AS HOW TO IMPROVE THINGS??HOPE YOU NOT IN PAIN WITH IT .NOT SEEN ANYONE USING OXYGEN AT THE CHEST CLINIC WHERE I GO TO..I ALSO HAVE TYPE 2 DIBETIS IF I WAS A HORSE I WOULD BE SHOT!!HA HA.ONE REGRET FELL I CANNOT RISK A HOLIDAY TO GUERNSEY ONE MORE TIME LOVE FROM TOM

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