COPD and Steam trains

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Hi might seem like a daft question. My husband more than likely has COPD (going to hospital Dec 17th) no earlier appoinment.  We are visting family for Christmas and have been invited to go on a Santa steam train on Christmas eve with the grandchildren.  Of course we would like to go and my husband in particular as he really likes steam trains.  I have said yes please but now have started thinking would the steam affect and smell affect his breathing.  Any one offer any opinion.

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  • Posted

    Hi ,it's hard to answer this question as he hasn't actualy gift a diagnosis ,

    but I have got,,, asthma ,Bronchietis emphasyma ,copd ,I was first diagnosed back in 1992 ,,,,,2008 we were in Switserland and we went on a steam train ( sadly not through the mountains ) I was fine ,we also used to go on the steam train in Wales ,I just made sure I had my inhaler with me and of course a scarf to hold up to my  face when it got a bit smoky and most all keep my head in to avoid the smoke ,,,,,,but best to ask consultant when he has his appointment as I wouldn't like to be responsible for any wrong imformation ,I'm just saying how I coped with family trips on steam trains ,good luck ,,,,,making family memories is important so I hope you make the trip .best wishes .

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    • Posted

      Thank you sounds positive.  If you have read or replied to my previous posts you will know that he was in A and E twice in September on his discharge letter it does state COPD exacerbation.  At his lung function tests they said they thought it was asthma but being an exsmoker I think it is COPD.  I know you can have asthma and copd.  He was supposed to see the consultant this month but as is often the case with our local hospital things get missed or messed up.  He had to phone and they knew nothing about it.  It was only after speaking to the doctors secretary that he got the December appointment and this is to see the registrar.  We have so many questions and no one to ask the gp says ask the hospital.  I called what I thought was the respiratory nurse but turned out that they don't deal with patients.  I have managed to locate a local breathe easy and we are going in 2 weeks time as they have a guest speaker a senior physio who deals with copd.  I feel like no one cares and as I suffer from anxiety everything is magnified in my mind.  He tried to get an earlier appointment and couldn't and when we asked about cancellations were told nobody cancels.  Sorry to go on about it. 
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    • Posted

      My heart goes out to you ,you must feel like my husband feels when I have an exasipation ,I to am an ex smoker ( stopped 1992) thank god ,,,,,,I don't know if you've heard about the PULMARY REHAB COURSE but they are amazing ,they have been soooooooo supportive over the years !I can highly recommend the course !ask your GP for a referral ,my copd is Asthma based ,but because of smoking I'm also Bronchietis border emphasyma copd ,,,,,try to relax ,,,,deep breathing exersises as shown on you tube will help you and hubby ,please make sure when going out side he has a scarf  and inhalers,once he's seen the consultant and a DEFINATELY diagnosis things will look better, 

      I see my consultant twice a year ,a pulmary specialist consultant nurse 3/4 times a year and the copd pulmary nurse twice a week at the gym ,yes gym ,I do 3 Klm on treadmil ,3 Klm on bike ,3 Klm on hand bike and try to do 1000meters on the rower ( but due to a bad back I've given that up for a few weeks) hahaha,,,,,,the point I'm trying to make is ,keep positive,I'm 70 in January and I honestly didn't think I'd  make  it this far back in 1992 ,,,,yes I've had set backs even a stay in ICU one Christmas ,,,,,but there's light at the end of the tunnel ,,,,,hubby will be ok as long as he takes his medication properly and looks after himself ,,,and you of course ,,,,please let us know hie things go after husband appointment ,,,,I'd like to know how he gets on ,

      and please try not to worry ,,,,,be good to yourself to .take care,x

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    • Posted

      Thank you also for your kind words.

      Lots of people on this forum have praised Pulmonary Rehab and I maybe wrong but I think that you definitely have to have a diagnosis which he will not get until December,  also that it is not guaranteed you will get on a course.  Maybe it's NHS cuts.  We are going to a local brreathe easy group a week Wedneday and the man who runs it had told me they are having a senior physio who deals with copd, so I think that might be helpful.  They don't do exercises at this branch although many do.  It's really a get together for a chat and cuppa and they have guest speakers.  Unfortunately my husband does not like being told what to do and does not always ask questions when with the doctor.  He think's I'm just fussing.  I know as a mild asthmatic myself to increase inhalers when I have a cold.  I hardly ever use ventolin just the preventer and only do peak flows if I am ill.  My husband was not told any of this.  He is on 3 

      inhalers and has not been told to increase any if he starts a cold.  He has the emergency pack of anitbiotics and steroids but surely you don't take antibiotics unless you really have an infection.  Even when he was in hospital he was not he didn't need them as there was no chest infection.

      He just had predisilone.  All this makes my anxiety worse.  I have a few health problems as well.  I will look at the exercises on utube.  I already do deep breathing for my anxiety.  

      Can I say well done to you for looking after yourself and keeping positive for all these years.  Unfortunately we both have osteo arthritis and are limited to what exercise we can do apart from walking and then not too much.  I know we both need more exercise of the right kind.  I had physio for my knees but each time what they did left me in pain for the week.

      I feel down at the moment my ibs has been playing up and with neck knee and spine all hurting not happy with myself.  Oh well will just have to wait until December will be just our luck we come down with colds and wont't be well enough to go.  I have so much to do Christmas presents twin daughters 40th birthdays etc.  Another worry my son had a minor stroke around the same time as my husband was in hospital he seems to be recovering well it was caused by stress and not looking after his diabetes which he has had since age 2 now 43.  He is doing well though

      and back at work part time soon to go full time.  I have told my husband who has type 2 Diabetes how important it is with his diet but once again he just thinks I'm fussing.  Sorry I have gone completely off the subject.

      So will finish and just say thank you for taking the time to read my posts and offering advice.

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  • Posted

    I know how you feel. I suffer from COPD plus heart problems and eye problems due to a stroke and damage to my optic nerve, plus now have ARMD. Where I live, they are always cancelling my appointments and putting me further back in the queue. You are not over-anxious, just worried about the fumes making your husband bad, as anybody would.

    If he follows Libralady's instructions, I reckon it would be safe for your husband to go with you, especially since you are seeing seeing a doctor before you go, who can give you the necessary information.

    Hope you have a happy trip and I'm sure your husband will fine. The doctor may even prescibe a dust mask for him.

    Regards, Val.

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  • Posted

    Hi,

    Everyone is different, I have chronic COPD and I'm very sensitive to smoke, steam and diesel fumes but in my book being a lover of steam trains is far more important so I'd jump at the chance of the trip ... but take a scarf wth me in case it gets a bit smokey, or indeed cold.

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    • Posted

      Hi I  am replying to you as you were kind enough to reply to my questions about steam trains.  To bring you up to date the official diagnosis is mainly asthma with fixed airway disease brought on by years of smoking.  I assume that means copd.  The treatment is the same 3 different inhalers.  He is ok but still gets out of breath at times and coughs.  I am trying to get him to lose weight he really needs to lose about 3 stone.  I am dieting myself at the moment.  It is hard as he is really trying with his diabetes to get his control better but I think he needs to give up the beer at least for a while if he is to lose weight, but I am afraid he will not to this no matter what I say.  To be fare he has cut down and is down having 1.5 to 2 pints but 4 days a week 3 off.

      I am only an occasional drinker so I suppose can't see why he can't stop it.  Anyway to get to my point.  As it turned out he did not go on the santa train trip at christmas  I went with th grandchildren instead.

      He is 70 in March and we want to give him one of those experience days that are available and the one we think he would love is an hour on a steam train upfront with crew learning the ropes and actually driving.

      After getting excited about it I began to think it would not be suitable as he has arthritis in the hips so wondered about climbing up also the breathing from the steam etc.  The small print just says you should be reasonably fit and in reasonable health.  I mentioned it to my daughter and she thought I was fussing to much.  I don't know what to do now the trip would in the summertime.  I know he would really love it but I don't want him to go and find it too much.  I obviously can't ask him or it will spoil the surprise.  It does seem from the reviews that most of the people who have done it seem to be over 65.  What do you think.  I am of nervous nature and my 3 children are used to me overreacting.

       

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  • Posted

    When I saw the old post I was a bit envious - I LOVE steam trains but, at 62 with moderate COPD I know this is a reciept for disaster (for me). I can/have done the carriage rides but keeping my head in, the open window caused me a few problems for most of the day (but it was worth it [cheesygrin]  ).

    ​It varies from person to person but for me the idea of the really dry air in the engine, the dust, smoke and steam would be like an hour in hell - I would probably be in bed for a few days afterwards!

    ​The weight issue - at 6' 1" I was 20 stone, about 5 stone too heavy (I also blame this on smoking because it happened when I stopped smoking!). I recently started a weight loss plan and have lost a stone (1lb a day) - the impact of this has been that it's so much easier to breath, my knee arthritis is a lot better and I sleep better (OSA).

    Maybe after I lose a couple more stone I will be fit enough to give an engine ride a second thought ... fingers crossed!

    ​Best wishes for your husband - hope he can do the engine ride and loses the weight - just a thought but spirits often contain a lot less calories than beer .... just thinking out loud.

    ​Good luck whatever you decide.

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    • Posted

      Thank you for your post.  This is also for others who kindly replied to my original post about Copd and steam trains.  As it happens I went on the steam train trip with the grandchildren as they were only able to get one extra ticket at Christmas.  I went because we knew that we were thinking about a steam train trip for his 70th Birthday.  Here now is my problem.  My family and myself wanted to send him on one of gift experiences where he could actually climb up and drive the train etc.

      We are now having 2nd thoughts because although we know he would love to do it, we are not sure if with his asthma/copd he would be able to take part.  I found out that he would have to climb 3 vertical steps on the footplate stand for an hour as there is no seat they also said that the smoke from the fire could cause problems with asthmatics depending or how bad they are affected and that they would not be liable for any problems which may arise.  Am I just being over cautious.

      One family member thinks so but they only see him for a few days at a time through out the year.  I am worried so is another family member.

      I don't want to disappoint him but equally I don't want him to become ill.  Has anyone done this kind of thing.  Would like to know what you think.  He is on symbicort spiriva and salbutamol his breathing is much improved although he does have some days when it is not as good but he does cough a lot on some days.  He is also having some tests done at the moment which we are keeping are fingers crossed will not turn out to be prostate cancer.  So you can see why we don't want to make the wrong decision and want to enjoy his self with all that's going on.

      Obviously we can't ask him about the trip as it would spoil the surprise.

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    • Posted

      Oh dear, what a conundrum - one side of me says "To hell with it - live for today" but then the sensible side keeps saying,"get in a carriage and enjoy the journey safe in the knowledge that you'll be okay tomorrow".

      ​Then of course we never know what tomorrow brings ... an exacerbation of a number 22 bus so shoudl we build the memories in the hope that the flu jab worked and the bus driver didn't?

      ​libralady13, you have asked me the ultimate question - and I don't know the answer! Well done for achieving that!

      ​Would I go on it? Honestly, no, I just know the price and it's too high for me to pay. I would happliy get into one of those old fashioned carriages wiht the corridor and emergency chain but, the engine ... afraid not

      Sorry, I really can't help you ...

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    • Posted

      Thanks for your reply.  I reaslised after I posted what I was asking.  Since then what we have decided to do is to design some sort Birthday card, which my son in law will do offering him various things including steam engine driving and murder mystery evening and let him decide, then I will book accordingly.  I am almost certain he will say the steam engine driving experience and at least it give him the chance to find out about it and make the decision for himself.  As you suggested me might feel that he is better just to take a ride on a steam train maybe with lunch etc included.  Also it gives us a bit of breathing space to see what is happening with his tests.  Thanks again, sorry to have put you in an impossible position.  

      Best wishes to you and keep well

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    • Posted

      What a brilliant idea! Don't feel bad about the Impossible position", i just thought i had an answer for everything - you dispelled that theory. 😁 please let us know what he chooses, how he gets on and maybe even a picture?

      ​Have a great time whatever you do.

       

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    • Posted

      Hello everyone who was kind enough to reply to me.  An update on the steam train driving experience.  We went yesterday afternoon and I was very anxious thinking he would not be able to cope or we might need to call an ambulance (my anxiety again).  Well I am delighted to say he was fine and throroughly enjoyed himself being the driver and fireman.  He said it was very hot in the cab but nothing he could not deal with.  A little short of breath afgerwards but salbutamol quickly solved that.  The only after effect is achingmuscles from shoveling the coal into the fine.  He was in such a good mood afterwards and kept talking about it.  We were able to watch and take photos as well.  
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    • Posted

      I am so pleased that the trip went so well and you both had such a wonderfull experience. Thanks to you, he had such a brilliant time and I'm so pleased you had such a wonderful trip. Please, please, send us some photos!  xx

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    • Posted

      Thank you so much.  Actually the trip was only an hour away as we recently moved up to Greater Manchester to live near family.  As I mentioned not sure that I should post any photos here as they include another chap taking the experience as well.
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