At My Wits End

[Johnsel]

Hi there my name is Johnsel and this is my first post. I was diagnosed with Pulmonary Fibrosis and mild emphysema just over ayear ago. It was manageable for the first 10 months and the appointment at the hospital even showed that my lungs had slightly improved, I was over the moon as I also felt much better. Then because I felt so good I did a silly thing, thought I would renovate our bathroom and did a lot of hard work and lifting. A few days later breathing became very difficult so much so that I was admitted to hospital and spent a week there. They told me I had an infection and gave me antibiotics which did not make much difference but I was advised to go back home as there was a lot of infections with patients at that time and they did not want me exposed to it. Since then I have been getting gradually worse with my breathing and nothing seems to work, i.e. Inhalers, salt pipe an air energy machine and antibiotics make no difference at all. I have omitted to say that I live in Spain and although tried very hard to learn the language could only grasp the basics so it is very difficult speaking to the doctors with a translator. I also have a very large hiatus hernia (7cm) which cannot be operated on due to a damaged esophagus. I feel so low, even though the doctor has put me on antidepressants, life seems to have come to a standstill. I cannot believe that I should be this bad after only 14 months and wonder if I will ever be able to get a bit better.

[sassy59]

Welcome Johnsel and sorry to see you are not doing well at the moment. It is difficult not speaking Spanish but you do need to see a doctor again and find out just what is going on.

Take care and do stay in touch. Xxxx

[Johnsel in reply to sassy59]

We are going again to the docs on Wednesday but don't hold out much hope there as although he is understanding not often much help. But thank you for your advice

[PastMeBest]

Hi Johnsel a very warm welcome to our friendly and informative community.

I am in a very similar situation health wise as yourself. I was diagnosed with Idiopathic Pulmonary Fibrosis in Nov 2015, COPD - Emphysema and have had a Hiatus Hernia for years. I also have other health problems. One thing that I do have though that really helps is a positive attitude.

My condition also showed some improved over the next year but it is still important that you look after yourself. It is not easy at times accepting that you can't do all the things you used to do. I can do most things but have learned to pace myself and ask for help to do heavy jobs. I'm sorry to hear that renovating your bathroom worsened your condition.

The hospital are right in that you are better being treated at home if that is possible because of the variety of infections you could pick up by staying there. If the antibiotics you were given by the hospital for your infection didn't work then you need to revisit your GP. A sputum test should identify which antibiotic is best to treat your infection. It also sounds like further investigations are needed to find out if anything else is causing your breathlessness. You don't mention whether you have been assessed by an Respiratory Nurse to see if Oxygen Therapy my be beneficial to you. May be worth asking about. I use Ambulatory Oxygen, 2Lt and find it very helpful.

Do you know what has caused your Pulmonary Fibrosis as you don't say that it is Ideopathic. Various treatments are available depending what has caused it. There are a couple of medications that are available to slow the progression of Pulmonary Fibrosis that can be prescribed by your consultant if you fit the requirements. They are Pirfenidone and Nintedanib.

It must be very frustrating for you not speaking fluent Spanish and having to rely on an interpreter when communicating with your doctor.

I've had a lot of problems over the years with a Hiatus Hernia and am on medication for it, Omeprazole and Ranitidine. I sometimes need to supplement it with Gaviscon as well. I also use a wedge pillow which does help a lot to stop reflux when sleeping. You'll also know the importance of a good diet.

As for your depression when you are feeling down come on here for a chat. Sometimes sharing with others can help lift your spirits. Try to keep yourself busy to take your mind off negative things. I do Paper Folding, Card Making, Adult Colouring Books, Reading, Gardening (when well enough), Repairing Clocks, and I use my computer for all sorts. I know motivation is a problem when you have depression but small steps are better than none at all. One thing that I do have that really helps me is a positive attitude but it takes a bit of work getting there sometimes.

Please keep in touch or if you need to you are quite welcome to Personal Message me.

I wish you better health.

John

[Johnsel in reply to PastMeBest]

Hi PasttheBest thank you for your reply and look forward to hearing the end of your message

[Johnsel in reply to PastMeBest]

Hello PastMeBest

Thank you so much for such an informative message. As far as I am aware I have not been diagnosed with Ideopathic Pulmonary Fibrosis. I will however mention this to my doctor who I am seeing on Wednesday. I am on oxygen at home (CPAP) of a night and also have a portable one as the hospital said I should be on it for 16 hours a day (very difficult). Everything I have been prescribed and have bought does absolutely nothing for me, and worse of all the consultant put me on a very high steriod dose (was 60 mg but now 40 mg) hopefully will be less at my next visit. However I am getting all the side effects from them, face has ballooned, tremors, muscle wastage, etc. and as far as I can see none of the benefits.

As for my hiatus hernia, I am on esomeprazole (40 mg) and ranitidine (150) to stop any reflux plus having to watch my diet. I am wondering if ,my hernia is playing a large part of my difficulty in breathing as well as lungs, as this bad spell only came on after renovation of the bathroom. I have however an appointment with the digestive doctor at the hospital on Monday who maybe able to throw some light on this.

Thank you once again for your comments and I will let you know how I get on.

[PastMeBest in reply to Johnsel]

Hi Johnsel idiopathic just means 'cause unknown'. Usually if they say you have Pulmonary Fibrosis the cause is known and treatment may be possible. I would ask for clarification as to whether or not the cause of your PR is known or not.

It was thought possibly that acid reflux caused by my hiatus hernia may have got down into my lungs and caused scarring. I had also worked with asbestos, grain dust and animals in the past, all of which are possible causes of PR.

Good luck when you see you doctor on Wednesday.

[Johnsel in reply to PastMeBest]

Hello PastMeBest

I believe like you my PF was caused through acid reflux along with my hiatus hernia. As well as a doctors appointment on Wednesday I also had a hospital appointment with the Digestive Doctor today which was rather disappointing as they confirmed they could do nothing about my hernia due to a damaged esophagus (caused by reflux). I really believe the hernia has a lot to do with my breathlessness as well as my COPD. I have heard that sometimes a chiropractor can help so I may explore that.

Of course another reason for my lung condition is the fact, although I gave up smoking 15 years ago I was a heavy smoker.

Thank you again for your comments I do appreciate it, and it's good to talk to others with the same condition.

[Pam1952]

Good morning Johnsel and welcome.

So sorry that you're struggling at the moment and I hope that you can get some answers from the medical profession in Spain......language barrier is always a bit tricky (my Spanish is almost non-existent).

I'm sure that PastMyBest will have some good advice for you. In the meantime I'd like to wish you the best of luck and hope that you're feeling much better soon. Please let us know how you get on. XXX

[Johnsel in reply to Pam1952]

Thank you Pam1952 for your kind words. It's good to speak to people who are in the same boat as me.

[hufferpuffer]

Hello Johnsel, nice to meet you.Sounds like a very nasty infection is still with you. Back to the doctors with an interpreter I think. It will take a while for you to get back to the level of fitness you were at before...you are amazing taking on big jobs like the bathroom .... focus on what makes you feel better. Wishing you well , huff x

[Johnsel in reply to hufferpuffer]

Thank you also hufferpuffer and look forward communicating with you again.

[bandit2]

Hi Johnsel, and welcome, Past by me has given you the best advice ever I would print it and have the interpreter read it to the dr. Then have the dr, tell your interpreter what is going on. I too have a hernia had it for years, I try not to aggravate it and it leaves me alone. I did the ranitadine for years now I take Tecta, certain foods and movements I have learned over the years not to do. You have to learn to listen to your body now and treat it special. Good luck

[Johnsel in reply to bandit2]

Thank you bandit2

[KCC08]

Hi Johnsel, I'm Kath and like you I live in Spain. I'm am inland from malaga so am treated at the main clinico in malaga. It is about 14 months since being diagnosed with PF, I have recently found out that mine is caused by methotrexate which I was taking for my Rheumatoid Arthritis. Nobody told me to stop taking it, so now am worse than I may have been. I am on prednisona now and don't really feel much difference but hope that I can get a bit better, even just a little walk in the garden would be great.

We have to keep our chins up and tell this horrible disease to take a back seat so we can live our lives without worry. Easier said than done I know. Keep smiling Kath xx

[Johnsel in reply to KCC08]

Hello Kath We live in Arboleas which is a small village in the province of Almeria. So enjoyed these last 10 years in Spain could not ask for a better way of life and now this has to happen. Sorry to hear you have the same condition and even worse through taking treatment for your RA. Was it a Spanish doctor that prescribed that drug? hope not. I am also on prednisona 40 mg and have all the nasty side effects but none of the benefits. I cannot believe that we both should be this bad after only 14 months. I had a friend who had it for years before it became so debilitating. I will certainly try to keep my chin up but it is so so difficult.

[Jaynair]

Hello and welcome Johnsel x

[Johnsel in reply to Jaynair]

Thank you

[Phyll]

I'm in exactly the same position as you. Was prescribed methotrexate for 5years for RA , not knowing that it was exacerbating the pulmonary fibrosis. I still feel bitter about this and tell everyone to warn people who are diagnosed with PF not to take methotrexate.

Anyway, I wish you well, try not to get too down!

[Nottobad in reply to Phyll]

Hi I was offered it and refused it as my consultant said one of the side effects was damage to the lungs. I have COPD and my lungs are already damaged. I have Psoriatic arthritis but it is treated the same as RA

[Phyll]

Gosh, thank goodness your consultant was so well informed. I wish mine had been. Not just that, but he was insulted that I had said that mtx was bad, pooh poohed my fears, generally pointed out that it was nonsense.However, apparently they have now started testing lungs for fibrosis at regular intervals.

Thanks for replying to my post. It makes me feel less pointless. Good luck with your treatment.

[mrsmummy]

Hi and welcome to the forum.

[Johnsel]

Thank you