Information Please
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Hi - I hope there is someone out there that can help! My husband was diagnosed with IPF last year (he is 72). He had a respiratory test at Arrowe Park Hospital in December and the results he was given was 80% in one lung and 75% in the other. He was then referred to Aintree Hospital which is the only hospital in our area with the funding for medication to help to slow down the problem. His appointment came through for Monday 13/03 and he had blood tests and a further respiratory test. This time the results were 90% in both lungs. When he enquired to the difference from the Arrowe Park Hospital results he was told that the equipment at Aintree was much better and gave a more realistic reading. Of course he was then told that he didn't qualify for the medication but he would be continued to be monitored. Has anyone else come across this difference in respiratory readings?
Thanks.
0 likes, 9 replies
bob80691 pippinscat
Posted
Hi pippinscat:
Very sorry to hear about your husband's IPF diagnosis.
You haven't said exactly what kind of tests your husband had and what the percentages refer to. So I assume they were Lung Function Test but it is difficult to be specifc without knowing what part of these test had results your are referring to. Normally the percentages refer to the percentage comparison of the actual performance of the lungs during the test as compared to the normal results for healthy individuals. These "norms" can vary from Lab to Lab, thus the percentages will also vary.
Therefore, try to find out what your husband's actual lung performace was in each test. If the actual lung performace was the same or nearly the same in both tests, but the norms used for comparison were different, I would challenge the findings. I do not think it is a reasonable explanation to be told that one Lab's equipment is better than another Lab's. In my experince it is not the equipment that's the issue but the norms used to measure the results.
Please come back if you are able to find out more information.
pippinscat bob80691
Posted
Hi and thank you for the info. Because we are new to this I can only surmise that the respiratory test that he had on Monday was to measure his lung function which came back as 90% - he also had a blood test where he said at least 3 different phials were taken (I wasn't with him for this or when they weighed him). I read comments in these forums and to be honest am quite baffled by some of the terms used probably because I should read up more on the disease but I think it's a case of burying my head in the sand!
epictetus1939 pippinscat
Posted
This is a disaster. I am so sorry. I have the same problem. I am 77 and my FVC is 108% so I do not qualify for Nintedanib either and I will surely be dead before i qualify because my gas transfer is already below normal. There is accepted evidence that Nintedanib is useful even in my case. There are 3 things to do.
1. Go to your MP and get him/her to ask a question in the house. UK is the ONLY COUNTRY IN EUROPE which does not offer Nintedanib below 80%.
2. Insist on a remeasurement but this time get him not to try so hard. A consultant I know in Southamptom recomended this. Also get him not to stand up straight when he has his height measured and dont wear shoes. because the FVC % predicted depends on your height and age. if he has a bithday soon dont wait till he is one year older.
3. Try to get your husband on a trial of Nintedanib. It took me nearly a year to finaly get accepted but I have done this and I wil get it for life. I believe the Royal Brompton and another hospital in the north are still recruiting though there is probably a long waiting list.
My FVC varies by at least +/- 5%. I measure my FVC on a protable instrument twice a week as part of the trial and honestly I can get almost any reading I want by using diaphragmatic breathing or not. I met somebody who was tought breating exercises by a singing teacher and his reading went up by 15%. Also different hospitals use a different formula to calculate the percentage.
I know al this sounds horrendous. Perhaps a more realistic plan might be go along with the monitoring but get the reading down slowly as above. This would be more plausible and with a bit of luck he could be down to 80% within a year.
I am puzzeled as to how the FVC % can be measured for each lung?
linda80939 epictetus1939
Posted
Hi epictetus,
I have been asking my gp,s for a while now to explain to me my lung function tests results. Basically I get told the same thing, " don't worry about that," also when I ask for someone to explain any doctor's letters they receive I am told that"they dont want me to be alarmed or to read something that may upset me "
Sorry but being diagnosed 18 month's ago with pulmonary fibrosis at the age of 57 was alarming enough so I'm sure being explained about my oxygen scores isnt going to alarm me any more. It's so frustrating!
From what I've read you seem knowledgeable about the results.
I wonder if you would mind, if it's possible to explain a couple of thing's for me. I was diagnosed in September 2015 after ct scans and lung function tests, ct scan showed numerous nodules in both sides of the lungs and scaring, this came about after 3 year's of struggling with chest pain,breathlessness and constant coughing.
My original DVD was 90% , in March it came back at 84% and in November it was 72% because of this my appointment was bought forward to early March and I'm going for a scan and another lung function in a few weeks. My consultant when I spoke to him a couple of weeks ago was way behind with appointments so didn't have time to"chat about these results"so still I dont really understand much. I'm the kind of person that needs to know what I'm fighting.
The other question I have about medication,I have never been offered any meds though I read about other's that take meds to try and slow down the disease. I have mentioned this to consultant who as said they are trialing the drug you mentioned later this year and he would mention me as a possible candidate. But lots of others are on it?? I am so confused about things.
Sorry for such a long post but I've tried to get some one to talk to me for so long.
Thank you for reading, if you manage to get to the end that is.
Kind regards Linda.
Sorry for butting in pippinscat and I hope your husband gets himself the meds that can help him. best wishes to you both x
pippinscat linda80939
Posted
Hi Linda - your post was very informative - to be honest we are new to all this and must admit we were on a bit of a high when we got the results on Monday but then my husband started having doubts about the test and why he could be told that the equipment at Aintree hospital was better than at Arrowe Park. He's now got to wait for his next respiratory test at Arrowe Park in July and all the time I'm thinking that time is not on his side although the doctor at Aintree did agree with him that he could outlive the disease. I think with him being fit - he loves a walk (albeit on the flat now) and he's got a small gardening round. Being a bit forward here but thank you for taking the time to read this. Take care Sue
epictetus1939 linda80939
Posted
Hi Linda
First are you sure it is called DVD? I think you mean FVC (Forced Vital Capacity) predicted. Predicted means your reading compared withthe average for people of your age and height. It is a very inaccurate test. The formula for prediction used varies from region to region. It is certainly possible to learn how to get high or low readings by the way you breathe and breathing exercises you can do.
Unfortunately the NICE guidelineds regard FVC predicted as the state of the are for assesing the progress of the disease and use it to deny treatment for people with 80% or more. The best treatments are Nintedanib and Perfenidone. Perfenidone makes you photosensitive and you must not go out in the sun. Nintedanib gives some people diarrhea but I have no problem with this. These drugs cost the NHS about £30,000 per year but have been shown to slow the rate of progress of IPF by about 50%..doubling your life expectancy.
So when you go for your next test wear shoes or thick socks and stand up straight when threy measure your height. Dont take a full breath and dont strain too hard when you blow out. You must not let them get a result above 80% or you wont get treatment. Let us know how it goes.
i spend a lot of time surfing the we tolearn about IPF and in my case the likely cause, gastric reflux. You can chat to the British Lung Foundation help line and you can join a local support group where you may be able to chat to a consultant over a cup of tea!
linda80939 pippinscat
Posted
Don't know if this is of any help but I am in Leicestershire. I see my consultant in a local cottage hospital which can do simple lung function tests but for a more accurate test the only place in Leicestershire with this equipment is the Glenfield hospital so I travel over there for my LFT and ct scans.
It may be the same in your husbands case.Take care hope your day is going well. Linda x
epictetus1939 pippinscat
Posted
pippinscat epictetus1939
Posted
Thank you for the information and your time to reply - it will all be taken on board and used on my hubby's next appointment. Hopefully we will get a more positive feedback if we are forearmed and know what we're talking about!