In a nutshell. 3 weeks ago my dads consultant said there was nothing that could be done for him. life expectancy was 2 years from diagnosis (which was 4 yrs ago) and he would arrange pallative care.
TODAY
Went to see a private consultant in Cardiff who specialises in PB. WOW. He's good. So for all you PF sufferers, read on!
He has known Pf sufferers to live for 12 years and one case was 17 years. He said it is often dormant for 5 years BEFORE you start getting symptoms and then if you get it diagnosed at the right time, TREATMENT can work and does work. He said he has CURED people of fibrosis when he has seen them at the right time and depending on the severity etc. Each patient is different and has to be treated on its own merits. My dad has NEVER been given steroids and is starting a high dose course tomorrow for 8 weeks. He explained that this will not cause him to increase his weight, there is no proven link and if it does improve his appetite then he has to be strict with himself. My mother has clear instructions on cooking!
My dad said he has little appetite and doc siad that is wrong, he should have an apptite and we have to work on that. He also said that even though my dad has lost weight he must make sure he is losing fat and not muscle which is what he is doing. He has a belly-sorry dad-and he explained that this is not helping with his breathing cos his belly is pushing his lungs up and squashing them. Makes sense. We spoke about a transplant option and although he said he had not known anyone to have them over 64 yrs of age, he has not ruled it out. He wants to see what happens with the steroids first. He also diagnosed asthma-no one else has. My dad also used to take simvastatin for cholestorol but stopped them ages ago cos he didnt think it did any good. Doc said he needs to restart them because they also have anti-inflammatory purposes and this is paramount for the PF.
My dad came out smiling and that was enough for me. So I do believe that its not what you know its who you know. As my dad said, he was worth every penny! He's right but we should all have access to high callibre specialists shouldnt we, NHS or private.
Keep positive and smile xxxxxxxxxxxxx
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tanyamarie
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That is really positive and just goes to show that you have to keep asking and asking (or paying in your case) until you get the answers you need. Good luck TAD xx
I agree, I had my child benefit so was more than happy to use it to pay towards the cost, I'd give my last penny, but my parents refused and thankfully could afford it. And I will gladly share as much information as I can so you can take anything back to your GP's etc if needed.
Hi Tanyamarie, I'm really happy for your dad and all of you with the good news. I'm new on here and thought I'd tell you about my PF. I was diagnosed with sarcoidosis and PF purely by chance 13 years ago and didn't have any problems until about 7/8 years ago. The consultant in Liverpool didn't give me any treatment even when I started to rapidly decline about five years ago. In 2008 I asked for referral to Brompton and they have been fantastic. They have told me I have extensive PF and unfortunately up to now they don't seem to be able to stabilise the sarc/PF. However they tod me I could live another 15-20 years no one knows. I am on O2 24/7. I'm glad you found a good doctor, I think that is what it all depends on at the end of the day. good luck
How fantastic to read your reply, i am most grateful, thank you very much. Reading true stories, gives people hope and inspiration and if only one person gains something then mission accomplished in my book. Take care xx
most definitely, everywhere the message seems to be the same.... pulmonary fibrosis is the 3rd largest lung disease and no-one knows anything about it. There just simply doesn't seem to be an awareness and medical practitioners just simply don't know what to say let alone do to be honest. There are a few gems out there as we found out yesterday but its really not good enough, we all deserve the best care, no matter what.
well with everything that i'm learning i am seriously thinking about paying for private healthcare for my family and I just in case. its negative in a way planning for something unfortunate that may or may not happen but when you are put in that situation it makes you think.......
Just thought I would chip in to try and clarify some of the terminology used and perhaps give some clarification to the treatment of the group of conditions commonly referred to as pulmonary fibrosis.
To start off with - Interstitial Lung Disease (ILD) is the name given to a group if conditions - this can be further split into two groups - those that are Idopathic Interstital Pneumonia's (IIP's) and those that aren't. IIP's are not the more common and better known pneumonia.
IIP's account for 40% of the total ILD's. The IIP's include conditions such as Idiopathic Pulmonary Fibrosis (IPF), Non-specific interstitial pneumonia (NSIP) etc. IPF being the most common.
There are no treatments for IPF but there are treatments for the other IIP's. So if somone is classed as having "pulmonary fibrosis" or "fibrosis of the lungs" etc they may not be getting the treatment that may help their condition. For example most of the IIP's (excluding IPF) respond to some extent to immunosuppressants.
The Interstitial Lung Disesase guidelines state that ILD has to be diagnosed through a multi disciplinary team (MDT) at a specialist centre - the patient doesn't necessarily have to be seen by a consultant at the centre - it can be that their notes can be sent over to be reviewed.
So as you can see not straightforward - but what is cler is that anyone with an ILD type condition should make sure that they have been "referred" to a specialist centre. Awareness of ILD is increasing amongst the medical profession - here at the Helpline it is the second most common condition we get calls about.
Just to give you all an update, since leaving the appointment and spoken to other medical professionals, GP/Pharmacists/Respiratory Nurse/ no one has heard that the simvastatin can be used as an anti inflammatory, I even called the manufacturer. Not that I doubt what the Private doc said because working in the medical profession myself I know that many drugs are used for purposes other than what they are licensed for. I shall discuss this with him next time tho.
Also, there has ben questions raised over his claim to have cured PF. What this was based on I didn't ask and knowing that it definitely can't be cured I willbe asking him about this as well. But I do know that if it is caught at the right time and depending on the progression etc that it can be stopped in its tracks. Maybe that is what he meant, I don't know. Every case is different.
My father has been taking the steroids for a few days now and as yet has reported no change. However he did experience the 'false energy' that the doc said he would have and my dad felt well enough to come downstairs, after wakin, without his oxygen and subsequently had a very bad breathing episode and panicked and was turning blue. thankfully my mum and brother were there to rush to his aid. I have said that he must think of his oxygen as his lungs and where he goes, it goes. He went to tesco and asda last night and took his oxygen and sat in the car using it before he went in. He said it worked a treat. He is learning daily and I could cry and do cry for him as I know that accepting his limitations is half the battle.
Knowing that this disease is not self inflicted and caught through no fault of your own sucks and I admire everyone with this, you seem to have a determination that is inspirational, you all truly deserve an amazing life and it's great that we are all her for the ride together. It be nice if it was a ride that you could get off mind but as we are stuck on it through the ups and downs lets have a scream now and again to and laugh.
Enjoy the jubilee weekend however you choose, luv n hugs, Tanya xxxx
Dear Tanya ,glad to hear that your dad is making some progresss in living with PF,and that he has a loving daughter who realy cares.A good life with Pulmonary Fibrosis is possible once one accepts it and plans around it. I have been fighting it for 8 years and know my limitations. More laughs than screams is a good tonic,keep positive.I am celebrating my 70th birthday next month with my lovely family, and 3 adorable young grandchildren. My wife and I |( sounds royal dosent it)
are planing our holliday for next year, we fancy a cruise from Southampton.Will I Tell them( the travel agents) that I suffer a lung condition? NO WAY.
I live for today and enjoy nevery day, and count my blessings,You are doing great for your dad,
That is so kind of you Terry, thank you. You look royal, as well as sounding royal.......were you in the cathedral with Her Majesty earlier?!
A cruise sounds fantastic, funnily enough I did mention that yesterday to my parents but they just don't fancy it all all. They will never go abroad again unfortunately, they are too afraid, but we all went to Devon at Easter and are going again in 6 weeks time so my dad is still getting out and about.
I agree with you, laughter is the best medicine and we make my dad laugh as much as possible. Cry in private. He's out now with my mum and 6 year old daughter shopping for wedding outfits, my brother is getting married soon so he is looking forward to that.
Keep smiling Terry and love to you and your family xxx
Well, his NHS Specialist is based at St Woolos Hospital in Newport, Gwent to which he will not be going back to, but privately he is going to Spire in Cardiff. It used to be BUPA.
The specialist is DR Davies and if you look up the Spire website and select the hospital, it gives you a list of the docs and thir details. Dr Davies is a specialist in PF and my father found him fantastic. So far, the direction he has given my dad (he recommnded a v high steroid dose) is working out great and we will have a second review with him in a few weeks.
Good Luck and take caree x
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