Oxygen dropping

[Janeforpaul]

My hubby Paul has ipf lately he has been getting headaches pain across chest from shoulder to shoulder been waiting six weeks for an oxygen review as his consultant sais five months ago only needs it on excretion. Why does everything take so long especially when he has four other chronic illnesses to deal with. Not happy right now

[Janeforpaul]

Excertion sorry

[Janeforpaul]

Any help would be appreciated

[mrsmummy]

Sometimes it pays to make a fuss rather than being too patient, as long as you remain polite. If you need medical advice for your husband please feel free to call the BLF nurses during office hours on 03000 030 555.

[sassy59]

Please contact consultant and say Paul needs an oxygen review urgently. You need to push for things to be done these days. It's not right to have to fight for things and l hope you do get help for Paul urgently. Xxxxx

[Janeforpaul]

We did ring but consultant not in work so have to wait been waiting six weeks already to see respiratory team he has never had his blood gases tested in the three years he has been diagnosed .He says he can really feel a deterioration tired constantly

[Janeforpaul]

When he spoke to respiratory team this morning they said he should be on oxygen at least 16 hours a day from the report they have read on Paul but still have to wait for consultant to change the prescription

[Patriciapotts in reply to Janeforpaul]

Respiratory nurse practitioner can prescribe 02 for you. Push if necessary demand!

[Watfordgirl]

You must be really worried that nothing seems to be happening. Can you go to see your GP to tell him how Paul is struggling and ask him to hurry things up. And do what sassy suggests and contact Paul's consultants secretary.

Make the fuss! Sue x

[Watfordgirl in reply to Watfordgirl]

You posted while I was replying. Get back to the respiratory team tomorrow. Your poor husband needs his oxygen!! xxx

[Janeforpaul]

Done both gp won't do anything without consultant say so I've been crying all day as I know he is getting worse and don't know how much time we have left together, He is only 51

[Janeforpaul]

We have the oxygen in the house so we have decided to use it for the 16 hours don't know if we are doing the right thing or not.surely you can't have too much oxygen

[Watfordgirl in reply to Janeforpaul]

I think you can have too much oxygen. What setting will you have it on? Sue x

[Six1 in reply to Watfordgirl]

Watfordgirl what is to much oxygen? I started out on 02 ,2,yrs ago hospitalized twice now I'm on ,24hrs sometime I try 2 do things without it but right back 2 it I go

[Watfordgirl in reply to Six1]

It depends on what's the matter with you and is usually worked out on blood gases. It' a medication and each patient has the best dose for their problem. I hope you're doing ok, Six1.

Sue x

[Six1 in reply to Watfordgirl]

@Sue x Thanks I'm OK sticking to 04 til they get me back down font no how long that will take

[Patriciapotts in reply to Janeforpaul]

You can have too much 02. BUT a respiratory physiotherapist can guide you to what your husband may need in the interim. Ring hospital physio dept in your area

[mrsmummy in reply to Janeforpaul]

You can definitely have too much oxygen. Do be careful.

[Mandy6513 in reply to Janeforpaul]

You must be careful giving oxygen if you give him too much it can be dangerous ....If you buy a finger pulse oxymeter you can see how low his oxygen is ...you can buy them from boots they are not that expensive ....Im on oxygen and most of us need to be between 88-92

Take him to a and e if your really worried and let them sort him out its outrageous the way you have been left if he needs oxygen 16 hours a day its probably the reason he is getting headaches because he is oxygen starved

[Janeforpaul]

It's only on a two

[Watfordgirl in reply to Janeforpaul]

Is this what you were told Paul would be having? It might be better to start at one litre per minute and see how he goes. But I can't advise you can I? It's only what I think. I can' t treat him!! x

[Janeforpaul]

Hopefully consultant will get in touch tomorrow with the respiratory team and then they can advise until we get the appointment

[Watfordgirl in reply to Janeforpaul]

Look after yourselves. x

[Patriciapotts in reply to Janeforpaul]

EDITED

Positive calm assertion

[Six1]

Janeforpaul I went to the doc 6 days ago oxygen was normal but pain in left shoulder been going on 3 months she said my lung is in stage4 but chronic along with copd and sarcadois and emphysema prescribed meloxicam for pain and inflammation helping a little bit I hope he feels better

[kurtjahn]

HI. IM NEW NAME IS KURT IM 60YRS OLD.. LONG STORY. AT 43 HAD BIG HEART ATTACK THEN AT 47 2MORE STENTS THEN AT 51 HAD EMERGENCY BYPASS 3WAY BYPASS THEN 3MONTH AFTER IN WENT BACK TO WORK LOSS JOB DUE TO MEMORY ISSUSIES DURING BYPASS HAD ISSUSIES EFECTED MY BRAIN AND SPELLING . SO OUT OF WORK AT 52 TO 56 VERY DEPRESSED DRANK TO MUCH. THEN AND LOSS EVERYTHING I HAD ALL RENTAL HOMES ALL. AT 56 HAD BAD FLU BUT NO IT WAS MY COLON ABSCESSED WITH E-COLI AND 10 OTHER BACTERIA IN BLOOD. 5 WEEKS IN I.C.U. CAME HOME TO GET STRONGER. THEN THEY REMOVED COLON. THEN THEY SAW MY O2 WAS LOW WHEN SLEEPING DOWN TO 78%. SO NOW NITE IS 77% AND 88TO 90% WHEN DOING THING DURING THE DAY. BUT WATCHING TV DROPS TO 84 TO 91%. SO IM ON O2 AT NIGHT AND SOMETIMES DURING DAY. THIS IS WHAT I NEED. HELP WITH TRYING TO QUIT SMOKING. BEEN SMOKING AT AGE OF 10 TO NOW THATS RIGHT STILL SMOKING 50 YRS OF SMOKING. I JUST BEAT MYSELF UP ALL DAY LONG. I JUST KNOW IF I DONT STOP ONLY MATTER OF TIME. HEAD ACHE ALL THE TIME NEVER HAD THEM BEFORE. CAN ANYONE HELP IM LOST DONT KNOW WHAT TO DO WELL I KNOW WHAT TO DO . IM JUST ABOUT TO JUST GIVE UP IT IS WHT IT IS......

[Watfordgirl in reply to kurtjahn]

kurtjahn hello and welcome. You're in a bit of a pickle and sound not well at all. I don't know how much we can help and think that you already know that the best thing you can do is to stop smoking!

Unfortunately you've posted at the end of someone else's post and no-one will see it. You need to write it again as a new post. Click on the 'write a post' at the top right of the page. People here are very friendly and supportive and will try to help. There's also a Quit Smoking community and you can post on two communities ar the same time.

I'll get back to you later but have to ask if you know that smoking around oxygen is dangerous?? It's not just the fire risk - smoking changes the action of the oxygen. I can't explain how but I'm sure someone will be able to.

Please do try again. Sue x

[Mandy6513 in reply to kurtjahn]

If your really struggling with packing in smoking try the e cigs they are better than cigarettes and helped me stop smoking

Your headaches need to be discussed with your consultant if your waking with them it could be that your retaining c02 and you will need a blood gasses done

If your getting headaches when your active it could mean your not getting enough oxygen