Could someone help ? I went to see Respiratory Nurse today my readings were 98 ---- and 38

[supe]

can somebody explain the what these mean ,and whats next ? I also have parkinsons disease head also gets messed up so if I write rubbish at anytime just let me know.

supe x

[O2Trees]

Just realised when i saw this second (first) question that i don't think any of us explained what an FEV1 means. It stands for Forced Expiratory Volume in one second, so it is the amount of air anyone can blow out in a second. It gets compared to a predicted normal which is worked out on the basis of someone's age, height and weight. So if the 38 figure is indeed the FEV1, then it means 38% of what is predicted for you if your lungs were normal.

Hope Im not confusing you more - it took me ages to get my head round this, so ignore if it's not helpful. Take care supe, jean

[Offcut]

I was given a different set of figures. I was fev1 1.76 and should be 3.3 which means I am 53% lung function. they also check the air still expelled after the 1 second then the test is repeated with salbutamol. This will then define if it is obstructed or restrictive? There was minimal difference to both tests for me and my doctor told me I have Restrictive Lung Disease. I had a very severe lung infection in 2008.

I keep meaning to have a pen and paper with me to write things down as my short term memory is rubbish.

Be Well

[O2Trees in reply to Offcut]

Sometimes they measure fev1 as a percentage, Offcut. Then sometimes as a volume which i think yours above must be.

On my copies of the LFTs they give you both.

[Offcut in reply to O2Trees]

I asked for mine and it was as if I had asked them for all there own money and bank account details.

[O2Trees in reply to Offcut]

That's outrageous to be like that with you. It is may not always be allowed but its done often enough for them not to treat you like that. You could ask your GP for a copy, or contact PALS (patient liaison) and ask the situation re having copies. If letters are written about patients with results in i think it is the law now that we get copies, but they don't always have the full results, just what the consultant thinks is applicable.

[Offcut in reply to O2Trees]

I am seeing them again on Wednesday so will try again

[O2Trees in reply to Offcut]

good luck, let us know how it turns out.

[helingmic in reply to Offcut]

Offcut. Ask for your result to be explained more clearly (we are not all doctors!). Say that if they don't want to share the result they should send a copy to your doctor and yourself (this is the law if a patient requests this). if they send a copy to your doctor, at least you can make a telephone appointment and have the results explained. don't be fobbed of, if they say that it's "Normal for your age, for your condition" or normal whatever. Normal doesn't mean anything. You are unique so you require a unique interpretatin for your particular case. Be polite, but firm. After all the tests are for your sake, not just for the filing cabinet!

[Offcut in reply to helingmic]

He told me I am below the normal low line and the fact my 1 second blow drops shows I am restrictive due to probable scaring. I was on an oscillator for 10 days with heavily infected lungs and had to have infusions of blood, once I had 6 units of blood in one day because my lungs were bleeding so much. I just do not understand how it cannot be scaring? Roll on Wednesday

[Hidden]

Hi Supe hard to answer your question not knowing what the 98 and 38 figures measured relate to, are these the FEV / FVC before the calculation to get FEV1% etc, it would just be guessy guessy to try and answer your query.

If you have the print out of the spirometry test the BLF helpline may be able to advise you further. Or just check back with the nurse or your GP for further clarification on this.

BLF helpline click red balloon top right for contact number, lines manned 10am to 5pm normal working week days

Best of luck.

BC

[helingmic]

Dear supe,

I am glad you told us what you know and also the fact that you have sometimes difficulty in expressing what you want to say. Will you be able to take these result with someone who can ehlp you express what you want, and ask the doctor to give you the explanation? and the main part of the test on a piece of paper so you can take this as a record. Say that it may be useful to you.

Perhaps a pulmonary nurse could go through the test with you.Nurses are down to earth and are, perhaps more ready to listen and break it down for you. Do tell them about your difficulty sometimes, but also say that you can understand what they would say to you, so they aren't put off. Best wishes to you and hope you find an answer soon.

[supe]

Off to see G.P. tomorrow I will be taking pen and paper AND hubby not that numbers will make me better but I would like to know more about ME.

[initial in reply to supe]

Good luck for tomorrow, and I hope you get your answers x

[supe]

Hi all thanks for support my,new GP was very understanding (as I have said my GP that has seen me through the last 7 /8 years is off having a baby ) he said to forget numbers and take each day as it comes.He said I have severe C.O.P.D this is why I am so tired and breathless and lots of other symptoms that have all got worse since the clocks changed, he told me to try to get some fresh air each day and do light exercises as I am able.If I get worried about anything at all he has given me a number to leave him a message and he will call me back and if he is not available an oncall GP that has access to my records will call me to advise,he took some blood tests and said he will also speed up the Rehab team.He was good only thing I didnt get was a sweetie ---supe xx

[Suzy6 in reply to supe]

So pleased for you supe. My Nurse told me the same throw away monitors and enjoy life. Told me to exercise as she wants me fit for rehab. Ha Ha. Haven't been too fit this week.