Oxygen referral

[Carnival567]

After my difficulties with the referral for ambulatory oxygen assessment I finally saw the respiratory nurse again on Thursday , after a six month break. As you can imagine it was rather a prickly meeting, but my husband did his headmasterly mediation and although we still disagreed we managed to move on. There was no apology nor did she even say that she hadn't meant to upset me, although how she can think that saying there is nothing she can do rather grumpily is not upsetting I don't know. Anyway, since we have to work together we agreed to disagree! I also discovered though that she had apparently discharged me, another thing I wasn't told. After this I showed her the letters from my consultants, and after reading the cardiology one she rather changed her tune. The upshot of all this is that she did a proper assessment with 6 mwt test and then tried me with oxygen. I am to have ambulatory oxygen, starting at 2l/m but with the option of turning it higher if necessary, I am not to do pulmonary rehabilitation until all the heart problems are addressed. The oxygen was supposed to come yesterday but didn't so I suppose I shall have to wait till Monday. But at least we finished the consultation in a better mood, talking about our dogs!

[Billiejean_2]

Sounds like a result, finally. I know you have other issues to deal with but I'm so pleased at least one of them has been sorted. Will be very interested in hearing how the O2 works out for you and if it helps you on a day to day basis.

[Carnival567 in reply to Billiejean_2]

Thank you. Yes I hope so too. I did notice that when she took me for a walk I was able to chat as well as walk without getting breathless. A major difference, I had forgotten what it was like! It's shocking how your body declines without you even noticing it isn't it? All the best xx

[Billiejean_2 in reply to Carnival567]

Sounds very encouraging. So happy for you.

[Caspiana]

Hello Carnival567 . I cannot fathom why people cannot simply do the job assigned to them without being "grumpy". It's as if some people do not understand that they receive revenue from it so as to be able to survive.

I hope your oxygen comes on Monday. Finally, you had a proper walk test and your oxygen.

Sending a big hug.

Cas xx 🍁

[skischool]

Congratulations carnival,you have persevered and finally got to where you should have been six months ago,lets hope you can now be more mobile and with the Ambulatory enjoy a better and safer quality of life............................skis and O2 cat x

[sassy59]

Glad things ended on a more positive note Carnival. Hope the oxygen does arrive on Monday.

Good wishes to you. Xxxxxx

[Katinka46]

Well done you. And your husband. That is a good result. Well, as good as it can be, I think, given the personality of the nurse. I now have a good relationship with my grumpy GP, when I could ---- and maybe should --- have walked away. But I didn't and his guilty conscience means he is now working his socks off for me.

Kate xxxx

[Time_2_drink]

Hello carnival at last something being Done I think you and I recieve about the same level of care and I can't imagine what they discuss at the multi disciple ernly meetings I'm sure they are talking about some one else I hope your oxygen comes on Monday same thing happened with me I waited ages But because I had concentrators put in it must have been deemed that I didn't need to get out which was the start of a lot of my problems .I am so pleased the oxygen helped you to walk and talk at the same time The Headmaster will be pleased lol But seriously how hard would it have Been to give you a apology Though I know at my own experience it don't happen with my people what type of oxygen are you getting liquid or canisters love Margaret xx

[Carnival567 in reply to Time_2_drink]

I don't really know yet. The nurse wants me to try both flow and pulse to see which suits me best, but she thinks probably flow, so it will presumably be cylinders. I hope they don't muck me about with the delivery, as I have my first appointment with the counselled on Monday. Apparently the company here won't give you a time slot for delivery, which is irritating. I am glad the Headmaster is getting involved, he is very supportive but expects me to deal with things, as I am generally quite strong, but I think his experience with his own illnesses this last year has made him realise how unstraightforward it can be. I do hope you are feeling a bit better tonight. Love Rosemary xxx

[Time_2_drink in reply to Carnival567]

Good afternoon Rosemary yes it is good that the Headmaster is getting involved Frank tried stepping Back and letting me Deal with things as far as possible But has realised that it is so tiring for me and like you say can have complications Didn't sleep very much at all last night Frank slept like the proverbial Bless him .I get oxygen from BOC they just say morning which is from 7.30 or afternoon which can be awkward if you have appointments or have to get Frank up to wait for morning delivery then they don't come till lunch time .I am a mouth Breather so can't have pulsed which is a shame because oxygen lasts much longer .I have the liquid. The nurse has just Been coming Back this evening sats Been playing up again thankfully not as low as Before .I Do hope you get the Delivery Monday nurse really should have sorted out which method you will be using before oxygen delivery I honestly don't know how these people keep jobs hope you get to your counselling take care love Margaret xx

[Carnival567 in reply to Time_2_drink]

I shall go to the counselling anyway, I've waited long enough for it. Peter will take me and drop me off, and then come home to wait. Only ten minutes away. As far as the type of oxygen delivery, I think she was covering all options because my situation is unusual. Her attitude certainly changed after she read the interventional cardiologist's letter, full of things like exceptionally large right heart, possible aortic aneurysm, hole in the septum etc. By the time we had finished she actually smiled. The trouble is because of this cross border business she hardly gets any information. The chap she saw before me had had a scan in Gloucester some time ago and she had nothing. Absolutely ridiculous! It still doesn't excuse her manner though, but we have to get on so we both have to make the effort. I think sometimes the medical professionals forget that they are dealing with people first and illness second! All the best to you and Frank. Love Rosemary xx

[Ergendl]

Well done for keeping at them until you had a result. Hope your oxygen is delivered soon. All the best.

[Offcut]

Looks like a good result. It does happen one person with half the information thinks it will control the whole problems we get.

When ever I go to hospital they always ask what oxygen am I on? When I tell them I am not they just shut up? I think that they are all waiting on a PH decision to see if they are going to take it down that route or not? My last PH test results went from mild to serious?

Be Well