[Kim Hetherington]

Hi Everyone

Thank you so much for all your replies and I apologize that I haven’t replied to each and every one of you and that it has taken me so long to return to the forum.

My father died at the end of October and it has been a busy time organizing his funeral, plus I have two teenagers and a part-time job to juggle

My heart goes out to all of you having this horrid disease and the psychological effect it has on us not knowing how long we have, worrying if our next lung test results will be as good or better than the previous ones, and not worse. Then the concern as to whether the anti-fibrotic drugs, or whatever we take, are working – or causing other problems.

I am still waiting for my next appointment at Papworth hospital. I was told it would be December but guess it’s more likely to be January or February. The gastroenterology department has signed me back to Papworth and only suggested that I take PPIs for a further month and then only as I need them.  I have lots of questions for my consultant including whether having a hiatus hernia would disclude me from being placed on a lung transplant waiting list.

I feel great at the moment but I have had my recent blood liver profile tests back and two of the areas have gone up quite a bit since June. I started the Ofev in September.  My Serum alkaline phosphatase was 76 U/L in June and is now 110 U/L. My Serum ALT level was 23 U/L in June and is now 71 U/L. Do you think this is something that I should be concerned about? My doctor has had these results for two weeks now and hasn’t contacted me. Again, I need to discuss this with my consultant at my next appointment.

I do feel great at the moment. I FEV/FEV1 are 76 and 72 down from 78 and 74 at my first appointment back in April. However, I am not coughing, I can walk miles, I do find flights of stairs tricky but then I always have done. I wonder if I could have had this disease for years and it not been diagnosed. I was diagnosed with asthma aged 30 and I’m now 58.

I have odd days where I feel overwhelmed and anxious about dying and leaving my family. I can’t bear to think about it. Mostly though, I am being positive and know that there are at least 2 new drugs in the pipeline that have been shown to stop fibrosis progressing and possibly even restore fibrotic lung tissue – Saracatinib was one of the drugs. Are those of you in the USA aware of this drug and do you know when it will be available for use? I really do hope there is a cure for this disease too.

Regarding GERD and hiatus hernias. I read that up to 50% of the population have one and many don’t even know. So, I wonder how far GERD and hiatus hernia are connected to the development of IPF.

I have had some good news recently in that I received my mum’s health records (she died in 2020) and she did not have pulmonary fibrosis despite having suffered with rheumatoid arthritis from the age of 21. She was 78 when she died. I hope that I can reach a similar age. Not sure how likely that would be – 20 more years, lol!

My dad had COPD but had smoked heavily for years. It reassures me that I was with my mum for 9 days and nights and at the time she died and my sister was with my dad. I really hope that our NHS system here doesn’t collapse completely and I can continue to receive the Ofev and drugs to treat pain/anxiety at the end stage when my time comes.

Anyway, on to positive thoughts. I wish you all a happy Christmas/holidays and a healthy 2023. x

[Kim Hetherington]

Hi Jeff

Thank you for replying and I’m glad that you are not experiencing indigestion since taking Omeprazole. Are you on that long-term? I started to take Nexium while I was on holiday after the reflux episode but I had to swap to lansaprazole as Nexium clashes with Citalopram. I was on that for post-menopause anxiety and had weaned myself off, but then had to go back on it following my diagnosis. I feel as though my digestive system is being hammered by medication. Last year I was on ibuprofen for 6 weeks following torn meniscus in both knees. Thankfully, that has cleared up and no more ibuprofen is necessary. I wonder if that could have affected my stomach or just maybe it’s the hiatus hernia causing that as well. I guess I’ll get some answers from the medics soon.

The hospital has said to stay on the lansaprazole for 4 weeks and then take only when required. I’m a bit nervous about not taking them as I have researched that PPIs may help to protect our lungs more.

I hope you are doing well with your PF. Is it IPF in your case as well? I had never heard of this disease before. My mother had rheumatoid arthritis and I had wondered if that was the cause of mine but I have no inflammatory markers and they suspect my lungs will form a UIP pattern. Life!

Take care.

Kim

[Kim Hetherington]

Hi Peter

Thank you for your post and I’m sorry to hear about your diagnosis too.

Yes, I don’t want to be taking lansoprazole for too long but it seems to be helping at the moment. I will speak to my consultant about melatonin at my next appointment. I have two large pillows that keep me propped up in bed and do sleep on my left side, although I think that it would be better to raise the bed itself and go back to using one pillow which is better for my neck.

I’m glad that you have found a treatment that works for you.

All best wishes.

Kim

 

[Kim Hetherington]

Hi Libby, firstly, I’m sorry about your diagnosis. None of us wanted to hear this news!

I am feeling more and more that the hiatus hernia is not the cause of my IPF and maybe the cause has been a mixture of things over time. I will look out for GI-Encap. I am currently taking 15mg Lansoprazole early in the morning and then Gaviscon before bed. This seems to work unless I eat non-lean meat/spicy food. I don’t do this very often but I think total exclusion is probably the answer. I too have the burping. I seem to be coping on Ofev although have occasional side-effects that I am managing to deal with.

Let’s hope researchers find a cure, or at least a drug that will stop the progression of the fibrosis completely, soon.

Best wishes.

Kim

[Kim Hetherington]

Hi Nina, thank you for your comment and I’m sorry to hear about your diagnosis. I hope that you are keeping well and that the acid reflux and PF are stable. I find lansoprazole helps my stomach and I take Gaviscon before I go to bed. I sleep with my head raised. This all seems to help. I did speak to my GP about whether I should have surgery for the hiatus hernia and she said no. She advised that very few individuals progress to surgery if the medication prevents any further reflux/issues. So, I’m still on a weight-loss plan, walking lots, and practicing deep breathing. I hope that my IPF remains stable and that a cure can be found before it progresses too far. I live in hope.

Keep safe and well.

[Kim Hetherington]

Hi Denise

Thank you for your post and I’m sorry for your diagnosis.

I too have been altering my diet and the symptoms have more or less disappeared. I’m still taking a PPI (20mg) once a day, but I will wind down after Christmas. I avoid rich food but I am going to have some Christmas pudding tomorrow and I’m looking forward to a family Christmas dinner. Other than that, bland and low fat seems the way to go.

My mum had rheumatoid arthritis and I know that people with RA can go on to develop ILD. However, I’ve had her health records through and there was no sign of ILD. So, I’m still curious as to how far IPF is caused by GERD, hiatus hernia or aspiration. Or, whether it’s something different all together.

Let’s just hope that there is a cure, or at least medication that will stop it progressing in the months ahead.

Best wishes and a Happy Christmas/holidays to you.

Kim

[Kim Hetherington]

Hi Holly

Thank you for letting me know about your experience. I was diagnosed back in January 2022 having had a cough for 12 weeks. It’s early stages but I’ve lost 4% lung function since January. I am still fit and healthy although a bit overweight. I’m desperately trying to get the weight off so that I can at least be considered for a lung transplant when things get worse.
It’s reassuring that surgery can stop the reflux. I honestly put it down to gallbladder issues and wish now that I’d pushed for further investigation. That said, I don’t think anything would have shown up until recently in any case. My oxygen levels are stable between 97-99%. I really don’t want it all to be downhill from now and so your post has made me feel better and more positive. I will discuss it all further with my consultant when I meet up with them in December. I’m taking Lansaprazole (30mg) once daily and then Gaviscon before I go to bed. I sleep virtually sat upright.

Strangely enough, I joined an online ‘cough’ conference earlier this year and one of the speakers told me that I was probably aspirating. I am glad that I attended the meeting and pushed for a referral regarding my oesophagus. I had helicobacter pylori several years ago but recent tests have shown that to be clear and so I have no idea what is causing the gastritis unless it’s the Ofev. Could it be the Ofev if it can cause stomach bleeds? I don’t want to come off the anti-fibrotics as they are a lifeline to living longer – I hope! Anyway, it’s reassuring that you are feeling good after surgery and that your spirometry results have improved. Onwards! Take care.

Kim