Result of VATS biopsy

I went to see the surgeon today, who did lung biopsy nearly 3 weeks ago. I have IPF. That's all I know until I see the respiratory consultant again, who referred me for the biopsy. She only referred me because we kicked up a fuss about nothing being done to get me a definative diagnosis, after being told I had an ILD of some kind in July. At least now I know.

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  • My hubby gets breathless I kept on for him to get checked out the Dr sent him for an ultrasound he was told there was nothing wrong we just happened to go to a local event where a respiratory nurse was asking if anyone was happy to take a respiratory test my hubby refused saying that he had just had an ultrasound and all was ok but the nurse persuaded him to have the test anyway she then forwarded him to the Dr who then said he had COPD the Dr gave him medication which after talking to a respiratory nurse was too strong and go back to the Dr who then changed the medication. Hooray for Respiratory nurses they certainly know what they are doing.

  • I'm sure you're relieved to finally have a proper diagnosis CW. At least now, you can get started on the appropriate treatment and get the support that you need.

  • I'm glad you have a diagnosis. Not good news but I always think to know what something is better than not. Psychologically it puts one in a different place.

  • Your right kat. I have been waiting a long time and am relieved at last to know what I have. The surgical team were lovely. But I am aprehensive about seeing my respiratory consultant again. She was very cold and unapproachable. Had no desire to explain all the acronyms she was quoting, ie, nsip, ipf , ha, etc, etc, some which I knew and others I didn't. When we asked her ro repeat and explain some of these, she answered 'it will be in the letter'. I am worried my life is now in her hands and she has no empathy. I know it's not just me, someone else I know of had a relative under her care and described her as a cold fish.

  • You have a right to change consultants. But there might be difficulties. You need someone who is a specialist in IPF. And they may be few and far between, especially if you live in the wilds. If it's not possible to change then explain the problems you have with her to the PALS team at her hospital. You do not even have to make a complaint, just "raise concerns." I have had friends who have done this with excellent outcomes. Empathy is now accepted as a necessary part of the doctorly package. It is taught at med school. It is only when people like that are challenged that things will change. She may even be on the autistic spectrum and have no idea of the effect of her manner on patients. In one of the cases I just mentioned two consultants were sent for training.

    I am the type of person who likes to do something, and find action the best way to avoid stress, but for others taking action is stressful. You will know which type you are.

    All the best

    Kate x

  • Lynne, only just saw your news now. How are you doing, luvvie? Xxx

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