Still Waiting

there is no cure for ipf the treatment is inhalers which is to try and slow down the progression of the disease I am end stage and no inhalers is not working for me that's not to say they wont work for you. they will know how bad your case is and see you accordingly.ive been given 6 months to live two months ago and they made an appointment to see me in 6 months if im still here. my own doc has added me to palliative care register.hope you see your consultant soon.to put your mind at rest.but you can your own doc he may have results

I'm so sorry that your prognosis is so poor, and thank you for taking the time to reply to me. Do you mind my asking how long you have had IPF for/

Sorry to hear your news Teaky, as for marys question do believe her outcome and wait are quite normal . best wishes to you both

Have you contacted your gp's surgery to ask what has happened?

Best wishes

Yes, they have heard nothing either. It is 17 weeks since I was first admitted and nobody has even discussed IPF with me. I was never told they suspected it and it was first mentioned when I received the results of the lung biopsy. I have even said I will pay for the initial consultation, but have still heard nothing. I'm at a loss as to what to do next?

Hi Mary, diagnosed 13th December, we are now only 6 January, its not very long. It can take a while to see a consultant but as suggested above, check in with your GP and ask if there has been any indication of how long you will be waiting for an appointment with the Consultant.

"The consultant said she had no idea what was wrong with you." Is that an entirely different consultant to the one you are waiting to see?

Once under the consultant, the consultant actions tests and scans to be carried out to determine an accurate diagnosis. If condition is unstable consultant often asks patient to make another appointment at reception before leaving the hospital. At least that has been my own experience.

There have been recent changes to the way things work with specialist hospital appointments, I have also known that patients wait for a letter to arrive on which is a reference number and contact number which patient calls and then an appointment is agreed, this then is followed up in writing with a letter of appointment confirming the date and time to attend and any other instructions and information concerning the visit.

Hope you find you don't have to wait too long.

Best wishes BC

Hi, thanks for the reply. Yes it is a different Consultant because the first is retiring, although she is apparently an expert in IPF. I think she did suspect IPF based on the tests I've had, including a lung biopsy, she just wanted to be sure. Guess I just wait for the appointment to come through, although I have asked my GP to chase it up.

Hello Mary

I went for tests last June then got a diagnosis the same as yourself by letter about 2 months later I then received an appiontment to see the consultant for November so all in all it took about 5 months from my tests till I saw a consultant , When I seen him I didnt get much information and an appointment for this coming May .So probably to answer your question it is usual to wait a while to see a consultant I suppose it depends on how stable your IPF is .

When I got my letter the phone number was on it for the consultants secetary , I phone that and the consultant phone me back you could try that or get an appointment with your own GP and take a list of questions with you so you dont forget to ask something

All the Best

Alex

Thanks Alex, that's really helpful. Guess this time thing is very long winded and I just need to be patient. I am taking steroids which have helped a lot. Thanks for the reply.

Hi Mary 1956. My Husband was going to see a Specialist first for Bronchitis then Bronchiectasis. We went to see him one time and all of a sudden it was like a bright light had come on in his head. I think that you have IPF he said. I went with my Husband every time which was six monthly. They do breathing tests and the occasional scan. Apart from that nothing. This last time we went he had left my Husband for a year. I knew his breathing had got worse but wasn't quite prepared for the news we were met with. My Husband was given a year to live. At the same time they just put him on oxygen. That was nearly three months ago. We now have a Palliative nurse who is lovely and I can phone either her or an emergency team at any time. We also have a Respiratory nurse so if we're worried about his oxygen we can ring her. We went away for a couple of days for the New Year and we had the oxygen delivered where we were staying. My husband has had IPF for at least four years. Maybe five or six. X

Hi Mavary, I am sorry your husbands condition has deteriated. I have been getting progressively more breathless for 3-4 years, but only uphill until last summer when 2 bouts of pneumonia within 3 months made me realise something was wrong. I had a lung biopsy which has confirmed the condition. I'm on steroids which helps, but it appears nothing much can be done. Wishing you all the best. x

Hi Mary. My Husband has had steroids twice for infections. According to our specialist they don't give steroids now as he said it doesn't help. A lot of other people take them and I am wondering if we had the best Specialist. I think most of them don't know a lot about the illness and are stumbling around in the dark. If you are under ( I'm not sure if it is sixty or sixty five ) they can put you on Perfenidone which can slow the disease. It depends how advanced it is. It may be worth asking. My Husband is too old and too advanced. X

hi mary I have had ipf &copd for about six years now.but I continued to smoke don't know if you smoke but my disease is due entirely to smoking. so if you smoke you really need to stop.mines is idiopathic ipf you can also get pf due to auto immune disease hope you are early diagnosed the fact you are not being given an appointment in a hurry is probably a good sign

Thanks Teaky. Mine is idiopathic but I think I damaged my lungs from high altitude trekking. I gave up smoking 15 years ago; so pleased I did. I hope its been caught early. Thanks for your reply, I really appreciate it.

Read this with caution because this may not have happened to anyone else, but I was told 2 years ago that I have IPF after a open lung biopsy. Had a number other medical problems with my blood last year which resulted in being in hospital 4 time lots of tests 3 CT scans, chest xrays because they also thought I may have cancer. On one occasion when I was in hospital I had a lymph node biopsy under my arm that did not show anything and I have what I am being told is stage 4 clubbing as a result of the damage to my lungs which all went to confirm that I had IPF. I was on steroids until July for my blood condition when I asked for a further CT scan once the steroids were out of my system as I was losing weight and not feeling very well by early evening the only thing I could do was go to bed and I wanted to know what was happing with my blood condition and my lungs as steroids can mask sometime what happing and at this time I was not being offered any other treatment. So in October I had the CT scan which showed that I had enlarged lymph nodes in my chest. On the 12 December I went into hospital to have a biopsy carried out on these. I was call in on Christmas Eve for the results. As a result of this biopsy I have been told that I do not have cancer or IPF but Sarcoidsis which can affect your lungs in the same way as IPF and that the lung biopsy must have been taken from a part of the lung which was not affected but because I had fibrosis in the lungs as a result of this condition and I had the clubbing as well they had continued with the diagnosed of IPF. I am now back on steroids for up to 18 months until the sarcoidsis go`s into remission on its own feeling 100 times better without living with the time scale that having IPF can gives you. I know that I may have problems being on steroids for this length of time but I now have a future. So what I am trying to say I is check that the consultant you are seeing has looked at all the options and do not be afraid to aske could it be a different medical condition and have they considered other conditions.

Hi, They did loads of tests to exclude auto-immune disease, and they were all negative. They seem sure its IPF based on my lung biopsy. The one Consultant was very anti prednisolone, but the surgeon was happy for me to take it. I agree little seems to be known. I am 57 so maybe they will be able to give me something else???. Just waiting for the appointment and writing questions down as and when I think of them.

don.t ever let dr,s give u prednisone it is useless and accelerates ur illness pf. dacour

Hi,I don't know where you live,I am in Birmingham,but travel to Papworth for my IPF,was diagnosed last March,and have been seen several times since then.You are entitled to go to any hospital,Papworth or Royal Bromptom being the best.Most gps know very little about IPF. Pirfenidone is prescribed for mild to moderate IPF and N acetyl Estine both of which are sent from the hospital.Steroids are not now usually given for IPF.If you are on Facebook there is an excellent forum for pulmonary fibrosis you can join the group there also it's a closed group for us sufferers of IPF.Patients like me is another good site,and Inspire although an American site has lots of info.We need to heard , and you need to shout loud to get the treatment you require,best of luck.Sooki

Thank you, that's all really helpful. I live near Cheltenham and actually had my lung biopsy at The Heartland in Birmingham. The steroids have helped my breathing, but I guess it will be decided what I need when I see the Consultant. I have been referred to a Consultant in Gloucester who works with a ''National expert'' in Bristol. I will get onto Facebook. Best wishes to you.