It’s always scary when you feel your health is somewhat limited and yet there are no clear indications as to what is causing the symptoms and/or problems you are facing. This was the case with Dad, the full diagnostic process for him being told he had IPF probably took about five to six months, and even then, I don’t think he or any of us were fully told the gravitation of such a serious prognosis and what we should be faced to deal with. Most of that came from Google.
The course of his diagnosis also wasn’t straight forward, in fact it was clear as mud as a troublesome cough was initially treated for acid reflux and only on return when nothing changed, his prior history of heart troubles was monitored, which then raised the issue of his lungs not looking quite normal on a standard chest x-ray. This took a number of weeks before further investigation took place.
With that in mind, I thought I’d use this opportunity to write about some of the diagnostic tools used for lung disease and what you might want to consider if you feel at all concerned that you match the symptoms for either IPF or any progressive lung disease. There is plenty of reading attached in this post if you are the kind of person who wishes to know more, but I must stress this post isn’t designed to incite worry or fear. It’s hopefully something that makes the diagnostic process of IPF a little clearer for you and gives you prior knowledge if you find yourself going down this route.
This will probably be your first port of call and this in my history of having spoken to patients, is the most troublesome and perhaps regretted interaction because of the lack of awareness or gravitas of lung disease. Of course, a GP’s job isn’t necessarily to assume the worst, but they should at the very least take a thorough examination of your medical history and lifestyle choices such as whether you have smoked, if you have been exposed to harmful substances (asbestos for example) and your overall health. They can listen to your chest and lungs, and from that be able to tell how healthy your lungs sound as well as other physical indications such as clubbing of the fingers and how breathless you are on exertion. These symptoms will of course vary between patient and as to how serious or deteriorated you are, but trust in yourself that if you feel something quite serious is going on, press them to at least be referred for a chest X-ray or request to make an appointment with a respiratory consultant at your local hospital for further investigations. This may be the case if you have visited the GP a number of times and feel no progress is being made.
Disclaimer: I must also add that at this time and any other time, you have the right within the NHS to refer yourself to whomever you wish. Thought there are obviously waiting periods for more popular Consultants, if you don’t feel satisfied with your GP or where you are being referred to, ask around for some recommendations online and be insistent that you wish to be seen by an alternative.
Further Tests & Hospital Referrals
Either your GP will request these tests or a respiratory Consultant if you are transferred into their care for further investigations. These tests may feel a bit time consuming, and unfortunately the urgency of diagnosing IPF is somewhat lacking in comparison to other progressive and terminal illnesses. Be patient, but at the same time be prepared to be assertive in pushing for results as time is crucial when initially treating IPF to help stall deterioration.
The tests you will probably have are standard blood tests to measure how well your oxygen is doing in your bloodstream, this indicates how well your lungs are transferring oxygen into your circulation and also helps lab assistants see whether there could be a cause or anything abnormal in your system to bring about the symptoms you are experiencing.
Spirometry or lung function tests are key in assessing your lung capacity, how well they transfer oxygen and remove carbon dioxide and how well your lungs are at coping with the bog-standard expectations of what they are expected to achieve. If anything abnormal or concerning is raised, then it is likely you will repeat these tests at three month intervals (less or more depending on the Consultants request) to ascertain whether they are set at this level or whether they are deteriorating and struggling to function. If you do get referred for lung function tests, I recommend you look into what to expect and the type of equipment used as it may be a little emotionally overwhelming when you first walk in the door. Trust in the physician present though and be sure to ask questions or raise any concerns you have if you may struggle; this was the case for my Dad as his lung capacity reduced so quickly the lung function tests were a real hardship for him, so we pressed for CT scans as an alternative.
Plain Radiography (Chest X-Ray) & Computerised Tomography (CT)
Okay, these words may be a little scary but there is nothing to worry about. If anything, these diagnostic tools are the best and least intimidating as there’s not much to do on your part except lie still and let them do the imaging. Chest X-rays are done using the bog-standard equipment you may have come across if you’ve previously broken a bone and CT scanners are a similar method but give a more detailed view as to what your lungs are looking like internally. Both of these tools can give some indication if there is something amiss and CT scans in particular can help diagnose the type of fibrosis you may have depending on the characteristics the images present. See here if you’re more interested to know what the results may or may not mean.
Bronchoscopy & Lung Biopsies
If the diagnostic process is taking a while without much being achieved, these procedures are likely to be completed to help Doctor’s see a much clearer picture of what’s going on. There’s not much I can personally say to help calm your fears, so as before I suggest you do your research and ask plenty of questions. The main difference between them is that Bronchoscopy is generally local anaesthetic (you’re awake) and a camera is inserted to see a better picture of what’s going on. Lung biopsy is general anaesthetic (you’re asleep) whereby keyhole surgery is performed, and a surgeon will remove a piece of your lung to be sent for testing and further investigation. The Bronchoscopy is not necessarily a comfortable procedure but those who carry them out are well experienced to make it pain free and get the results as quickly as possible. If you are very nervous or anxious at the thought of this procedure then be sure to speak up to your Consultant as they can look into how to make it less intimidating for you.
For many of those diagnosed with IPF, looking back at the diagnostic timeline is a tricky and concerning one as it tends to take time and the longer it takes, the worse the prognosis can become if deterioration takes place further. It’s a hard battle to fight as you want to trust in medical professionals, but at the same time it’s clear that diseases such as IPF are largely being ignored and put aside considering how lethal and devastating an illness it is. More needs to be done to help people get help quicker and get treatment quicker, but hopefully if you’re on the road to diagnosis or want to consider your options if you feel worried about your symptoms, it’s better to go into appointments with a basket of knowledge than to feel forgotten about or as if you aren’t being treated seriously. Probably the most important advice I can give you out of all of this though is to be assertive, whether it’s IPF or anything else, you have to trust in your health and if you aren’t satisfied with the help you’re getting then speak up. I know it’s hard, and I know you want to trust in their efforts, but at the end of the day it’s your general well being on the line and that’s more important than keeping quiet and feeling as if the process isn’t going the right way for you.
For more information about being diagnosed with IPF or if you have any respiratory problems then please check the British Lung Foundation website or call their helpline on 03000 030 555 to speak to someone for more specialist advice on your situation.
I’d love to hear more from any of you who have been down this road, so whether you wish to share personal advice, stories or add anything to the pool of knowledge then please don’t hesitate to comment below. Thanks!