Sometimes you just have to say NO!!!

[dall05]

After waiting the usual 4 months it was time for my chest consultants meeting at the hospital. We arrived at the clinic with plenty of time to spare and it looked as though we were in for a long wait as it was very busy but after spending a lot of time around hospitals that was almost expected and don't bother me.

After a long wait the nurse as usual weighed me and checked my sats etc and then sent us through to clinical investigations for a lung function test, she told me that I only needed to go on the small machine and it wouldn't take long. At this point I said oh' I'm booked in for a full spirometry test because my lung problem is not the quantity of air I take in and expel, its in the gas exchange which only shows up on the full spirometry test on the large machine.

She said we may not have time for that but I will see what we can do and she left us in the waiting room. After about a half hour a technician came and took me through to do the test and sat me down in front of the small blow test machine. Knowing that this was a test that would not show how the gas exchange was working in my lungs I said there is no point in doing this test on me as it wouldn't help me or the consultant later, so I said if you can't do the full test as I was booked in for then I would come back another day. I had already been prepared for this as it was obvious to me they were trying to cut corners and rush people through. The nurse then took us back to the waiting room and said they would have to see what they could do.

One thing I knew was that I wasn't going to budge on this as the full spirometry was the only test that would tell me how my lungs were doing compared to my last tests and this was even more important to me at the moment because not only my consultant needed that information but the Transplant consultant at the QE also needed it in a months time to help him and me in our massive decision on whether I should stay on the transplant list or not. This decision was very much in the balance and all concerned needed as much information as possible on the table.

Anyway digging my heals in did the trick and a technician returned and took me through to do a full respiratory test on the larger torture machine. The outcome of this test proved to be very important to me as it showed a slight improvement and I was now up to 30% gas exchange. (amount of oxygen getting to the blood against the amount of carbon dioxide leaving the blood) through the alveoli.

Talking to my consultant just after I said there is a slight improvement and in his very words he replied yes but 30% is still crap isn't it. It was one of those moments where we both laughed even though we both new its a pretty dire situation.

Oh well I came away pretty pleased with the knowledge that my lungs were still holding steady after 3 years and if anything there is a slight improvement.

I now look forward to next months meeting at the QE with my transplant consultant and what he will advise on whether or not transplant is my best option or to continue as I am, breathless but sort of coping at a very steady pace.

At least we will have the information necessary to help us make this huge decision and it seems as though there are times when knowing as much as you can about respiratory tests and how the body works can really pay off when the nurses are trying to get home early and rush you through hoping you'll just go with the flow, it was a time to stand up and fight for what was right. I feel justified in what I did because the little extra time spend doing the job properly meant that the consultants time wasn't wasted, our time wasn't wasted and valuable information was gathered by all.

Healthunlockeders, it pay's to be as knowledgeable as you can about your particular lung disease and stand up and shout when you know things are not being done correctly.

Tony. Look after yourselves everyone and may you all continue to breath easy.

[Suzy6]

Well done. Wondering if I would be as steadfast.

[dall05 in reply to Suzy6]

I think the confidence to speak out when you know things are not right comes from hospital experience and having has much knowledge as you can about whats going on around you.

Don't be afraid to say something Suzy if you feel things are not quite right.

Tony x

[Toci]

Hi Tony, well done for digging in those heels! Fingers crossed for your meeting re the transplant. xx

[dall05 in reply to Toci]

Thanks Toci, there are times when you just have to speak out even though its not in my nature to do so.

Tony xx

[Bliss2]

Hi dall05 I'm new to having COPD had it now for one year an one month, I had to go for a spirometer test two weeks ago this was done by the nurse on a silly little machine the first test I had done was on a computer where I was blowing up balloons, I did say to her about the machine but she said she liked this small one, not knowing about it myself I let her carry on what advice would you give me for next time lol xx

[dall05 in reply to Bliss2]

Hi Bliss2, I've never heard of the balloon machine you speak of but the large spirometry machine they have at the hospital can tell them a lot more about how your lungs are functioning and is only operated by a trained technician. It can take around 1/2 an hour and be quite physically challenging but I would ask your respiratory nurse if you need it for your condition. xx

[longlungs]

Hi Tony good for you sticking to your guns.Sounds like your doing velly well my friend.Happy days Tony Janexx

[dall05 in reply to longlungs]

Thanks Jane, Things are going quite well for me at the moment so its fingers crossed as we both know things can change very quickly with lung disease.

Tony xx

[Mavary]

Hi Tony. Good for you. You're getting closer to feeling better.

[dall05 in reply to Mavary]

Thanks Mavis, is your other half better now? I hope so!

[Mavary in reply to dall05]

Hi Tony. Yes! He is much better now. I think it was probably the steroids that did it. It was very worrying at first. It came on so quickly and he only managed to stay out of hospital by the skin of his teeth. Glad you pushed yourself at the chest clinic. Don't let them push you back now you are so close.

[DozyDormouse]

Well Mr Miracle man, you've done it again and politely told the nurses that you knew what you were there for. Think I'll take you with me next time I see my man, although I haven't had any of those tests. Something about not being to take oxygen mask off for long enough. I'm with you whatever your decision re transplant cos you're the man. regards Dozy x

[dall05 in reply to DozyDormouse]

What can I say DD, you'll get there, you really will. I remember my first spirometry test, the technician just said 'well at least you tried' I didn't have enough breath to register any kind of reading.

Its good to know I have your support if the big decision comes on transplant or not. I know that if I break the 500 meter 6 minute walk distance at my next transplant check there will be some serious head scratching going on.

Tony xx

[appyalison]

Thank you for that Dal and well done for sticking to what you know is right. Alison

[dall05 in reply to appyalison]

After waiting 4 months for that spirometry I wasn't going to let them get away with fobbing me off because they had overbooked the day or were badly organised. The other more basic test would have just wasted everyone's time and money

Tony xx

[Sooki]

Goodness my results from a month ago was 29% dropped from 34% 6 months ago,diagnosed with IPF earlier this year,just started pirfenidone,and don't know where I contracted pleurisy from this last week, spoke to ILD nurse at Papworth where I attend,but she does not seem concerned,I am not due to go back to the hospital for nearly 3 months,I think 29% seems low and I was told am not ill enough to go on transplant list?I am starting to get scared over this illness.Linda.

[dall05 in reply to Sooki]

Hi Linda, My chest consultant told me yesterday that 30% is the level that they send people up for transplant assessment, when I was sent for assessment I thought I may be told I was too fit to be considered but to my surprise they told me I was ill enough and fit enough for transplant. I've been on the transplant list now for 8 months.

Tony x

[Chassa]

Well done for sticking by your guns. I have been assessed and accepted for placement on the transplant list. That decision is still to be made by me. I recognise and have had explained to me all the risks and alternatively benefits. I am at a complete loss at the moment as to what to do, but that is in my hands and I think at the moment I am inclined to put up with things as they are, dire as that is. I am straying a bit, sorry, from my point, which is that, like you, a LFT will show my spirometry to be pretty good, but my gas exchange lower in my lungs to be pretty bad.

It is so important that the full test is undertaken when this is the case, otherwise the consultant cannot possibly assess deterioration or improvement.

As you say it is important to 'know' your illness as best you can, but this knowledge only comes with time and experience and asking questions when you do not understand.

I would not advocate self learning through the Internet etc ( for me anyway) as I end up with every symptom described!! That's just me.

For now, I am inclined to have my situation monitored by the wonderful teams that do so. I had a LFT earlier this week, which indicated a slight deterioration, though not significant, since my last in September. As a result future appointment brought forward to January from April. You are so right in insisting on having the test you knew you needed. Well done and every good wish for the future.

[hufferpuffer]

Hello Tony, I'm so pleased you were assertive and had the correct test! Can you have a bloods gas check in which they take blood from your ear lobe? I think I have that coming up towards the end of the month.....

You've taken responsibility for your health and all those walks have done you good, well done you! a virtual pint coming your way! huff xxx

[Hidden in reply to hufferpuffer]

Hi hufferpuffer - I believe you can - the nurses at pulmonary rehab. told my husband that was possible. I hope so - he has one coming up soon too. Take care, TAD xx

[Hidden]

There are times when you just have to stand your ground - well done for doing just that. You have the information you need. You are an inspiration you do know that?? Fantastic a small improvement in three years only through your hard work and determination. May you continue to stay well xxx

[junespoon]

Yes Tony great that you insisted on the full test, You really give me inspiration, I wish you all the very best, Heather. X

[sassy59]

Great post dall and wishing you all the very best for the future. Thinking of you. xxxx

[Offcut]

well done nice to hear that you are the same which is not great news but even a slight improvement is better than hearing it is worse.

[Hidden]

Yep have to agree with others well done for sticking to your guns

Yer i was at my IIDB Appeal and its all the loon doc went on about is my my good FVC but when i told him about gas trapping was not interested

Yep well done wishing you all the best

[KingoftheCocktails]

Your consultant knows how to explain things in plain English

KOTC

[undine]

Good for you we should all learn to stand up for our rights - well done very proud of you - and actually in the long run saved hospital hours for you and them - take care - best wishes xxx