Dad going downhill fast

Dad going downhill fast

My Dad was first diagnosed with ipf about 2 and a half years ago. For the first 16 months it didn't seem to be affecting him and he carried on as normal. Then he has been on a very rapid decline. Starting with steroids, occasional oxygen, to increasing steroids and levels of oxygen including big tank in the bedroom. He was referred to a specialist in Sheffield who concluded that it was all being caused by his epilepsy medication tegretol. Poor man has not been able to drive since a seizure 14 months ago. We had hoped that he would get some trial medication as he still had 48% lung function. It took 4 months to transfer to a new epilepsy medication and now he is down to 20% lung function left. The specialist wouldn't answer my mum when she asked directly "is he still in the middle stages of this disease". Now he is having to wait for a CT scan and depending on what they find they could try immunosuppressants but this would be a "last ditch attempt". He now has a home oxygen monitoring system where he has to send his results down the line. 1 week ago his levels were 90. He is now down to 75. Does this disease progress this quickly? What can we do?

32 Replies

  • Ho wattoo, sorry to hear about your dear dad and l am sure someone will be on soon who can offer advice. I just wanted to offer support to you and your family. X

  • Thanks sassy

  • I don't know why this is happening to your dad, wattoo, but it does seem very rapid to go from 90% to 75% in one week. Im sorry, any knowledge I have is not around ipf. Could it be possible that he has caught an infection which might be affecting his gas exchange? I know you said he has to monitor and communicate his oxygen sats but are you in regular touch with GP or respiratory nurses to talk about what these sats might mean? I know your dad is waiting for a ct scan but that doesn't mean you can't call up his medics in between.

    Im afraid I know nothing of the interaction of ipf and epilepsy and the meds for both of the conditions. I have had my own sats drop suddenly from 92 to the high 70s but that was due to pneumonia and I have copd, so i don't think its relevant to you.

    You could try calling the BLF helpline and speak to one of the nurses. 03000 030 555 - Office hours. And if he worsens and you can't get hold of a GP, don't be afraid to call an ambulance.

    Im so sorry this is happening to your dad. Take care and try to stay strong.

  • Thanks O2Trees. The nurses ring us daily and as my dad is not coughing anything up, they have advised to hang fire with the antibiotics (mum keeps a supply in as advised). I will check with her again to see if there has been any change. We are waiting to hear from the oxygen nurses at the hospital as he needs to have his oxygen increased.

  • I hope they can do something to help. Take care, x

  • I am so sorry to hear of your dear Dad's struggles wattoo. What a lovely photograph.

    Love to you both.


  • Hi, so sorry to hear about Dad, are his sats permanently on 75? If so he needs to get a GP's opinion soon. I have similar problems and mine can drop very low, 66 the other day, but by sitting down and relaxing with my oxygen on it rises to low 90s in about 5 minutes. Please speak to your GP soon. Best wishes, Tatters.

  • No his sats drop to 75 when he has moved from one room to next (he lives in a bungalow). When rested we can get him up to 91 but generally late 80s. He is needing oxygen so much and even with oxygen he struggles outside. Thanks for your best wishes x

  • Dad sounds similar to me, I'm on oxygen 24/7. At the moment I am having trouble with water retention which doesn't help with fluid in the lungs. The Heart Failure Nurse has doubled my Furosemide to160 mgs a day but it's working. Keep us informed about Dad, you will get plenty of help on here. Give him my regards.

  • I will and you take care too x

  • Tatters, do you get legs cramps ( Charlie horses) while taking Furosemide? If so, what do you do for it?

  • Morning, No I don't get leg cramps anymore than I have always done, in fact I have had less (just watch speaking too soon) Years back when I was having problems with leg cramp I got something from the pharmacist, they were called something Crampons, think they are a climbing aid ! But I find my local pharmacist most helpful. I haven't read the enclosed leaflet but they seem to cover all ailments. As I said in my original post I am on 160 mg a day so the dose is pretty high. I do hope that you sort it soon. Take care, Tatters.

  • Hi

    I am sorry to hear about you dad being so unwell. I have an interstitial lung disease (not IFP) from what I have been told by my specialist, and from what I have discovered whilst researching the illness, a sudden deterioration, following a period of stability can happen.

    This awful illness seems to vary from one person to another considerably. I hope you can get some answers. It is worth trying to find a specialist ILD centre......not sure if you are already attending one?

    Take care and best wishes


  • Dad has his CT scan tomorrow so let's see what answers we get after that. My dad is under a specialist. He is also having pulmonary rehab too but they sent him home today as he was too breathless.

  • Dad is due back at specialist on Friday. He cannot even walk around with his oxygen on. The doctors have done nothing and he is giving up. He is convinced they are going to send him home to die. Let's hope this is not the case.

  • I am so sorry you have seen little improvement. Have you spoken to the British Lung Foundation nurses on their helpline? . 03000 030 555 during office hours.

  • Thanks will do

  • sorry should have told you I am on oxygen 24/7 when I stand up my sats drop to 72 it takes about 15 minutes to get sats back to 89-91 so like your dad I have been on antibiotics for 2 and a half years they are not working now I was able to walk to my car 4 months ago so it really does advance very fast now so your dad is still not to bad yet if he can go from room to room is good news

  • Toci I will ring them and try and get some advice,

  • Thanks Teaky. I think mum and I are asking for a miracle and we hope the doctors will give him something to bring his lung function up again. They are convinced that some of this is inflammation and not yet scarring of the lung.

  • I spoke to Dad on the phone last night and he was very breathless

  • Well I am here at Northern General in Sheffield. My Dad has only just got on his transport. He is now very stressed.

  • good luck don't leave until you have all the answers. Best wishesxx

  • Well we got our answers. None that we wanted to hear. He has finally been given immunosuppressive medication but this is "not a cure" the best that we can hope for is some stability for a while. He seems to still be going down hill fast. They have now increased his oxygen and he is now struggling to get around even between rooms and he is very down.

  • Hi darl, I hope your dad will respond to the medication and regain some ground. Best wishes to you allxx

  • Thank you for the leg cramp info. I hope your dad has stabilized since the last time we chatted. This is a tough disease! I a 2 months into it but I'm doing ok for now. I'm thinking about you and your family.


  • Thanks Lynda he now has an infection and the Drs are talking about taking him off his medication.

  • Good morning Wattoo,

    I believe we are in the same situation, my father has posted on this forum already about his struggles. He was put on the medication to try and slow the advancement however they gave a flu type symptom and now his liver is damaged. We knew it would be a possibility but like you I didn't believe how quickly it would take effect. The only thing I am now focused on is trying to take each day as it comes and support both my parents as much as I can. 

    The thing I have found amazing is the support  from all areas of my life, whether that is work (having to take time off on short notice), friends (who I haven't seen in a long time) and (family who has their own issues yet always find the time to support us).  

    I hope your dad has stabilised and sending hope, because hope is what makes go that little further.


    (Tenter's Daughter) 

  • Hi Suzy

    I feel your pain, this disease is so cruel. We now know that he is in the latter stages and day to day he just gets worse. What is frightening for him and us all, is that his brother died of the same illness last year (around this time). So he has seen what it does. I am still trying to carry on as normal, but now we are at the point that he cannot be left alone. mum is no longer sleeping as she just watches him breath. She tried to take him out on Friday but he really needs a wheelchair as standing robs him of oxygen and he can now only go five steps (with his oxygen on). My husband fell out with my parents last year and refuses to come and see them so I am doing this on my own. He asked me if my Dad was any better this morning and I could not bite my lip anymore, needless to say we are in full argument mode but at least it's a distraction. I love my Dad, I don't want to lose him. Xxxx

  • Suzy I hope your Dad is stable too, I will keep you posted.

  • My Dad lost his battle with pulmonary fibrosis on 2nd July 2016. He passed away peacefully in the hospice. I just want to send my thanks for all of the support that we have received here xx

  • I'm so sorry to hear this wattoo. What a horrible illness IPF is, some people like your dad seem to go downhill very fast. That is a lovely photo of the two of you, what a very kind face he had. I hope before long your special memories of him will outweigh the sad ones.

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