Son of COPD patient.

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Hi, I am not a COPD sufferer but I do suffer the disease with my mother who at 56 is very young to be at an advanced stage. I came onto this site looking for information on why she had suffered another acute exacerbation, which is her second in 6 months and I thought I would post my experience of the disease in the hope that it might help someone else in my position.

My mother smoked for 30+ years, and at 45 was diagnosed with emphasyma, and then later COPD - which with my father she has dealt with quite admirably. In the past year, I have noticed that the disease has taken a real grip on her and that her quality of life is taking a real rapid downward progression, meaning that she is pretty much bedbowned and realiant on my father for everything. I cannot imagine how she feels, but I try to understand by discussing it with her when she is able to although recently I have found that I try to talk about anything other in an attempt to keep her spirits up, which I am sure is a battle in itself for her personally.

Since the condition has taken hold in a major way, she has had a lot of medical attention from our local GP and the respitory specialists at the hospital. She has been on a transplant list for almost two years now and has been contacted twice to go for the transplant, but unfortunately has not been able to have it as she was on antibiotics the first time, and the tissue type was not right on the second. Still she remains positive, and never gives up hope. I am amazed at her inner strength.

As I mentioned before, I came onto this site for information as my mother has been admitted into hospital due to an acute exacerbation which I am struggling to understand. My father cares for her exceptionally well, so much so that the doctors but a lot of trust in him to manage my mothers condition and together they do a great job, so when she goes into hospital I am always left confused as to why this happens. It is not easy at all seeing her on a hospital bed with O2 tubes and antibiotic drips surrounding her, and she looks so frail and weak - and quite scared, which is totally understandable. I put a smile on for her, and chat about whatever I can which helps her I think, but when it comes down to it I am scared too so I hope that does not show.

I don't believe my mother has long left and trying to comprehend the inevitable is the hardest thing about the condition but I do not suffer it... I would really appreciate some advice on what happens with acute exacerbations and on a more personal note, what sort of thing my mother is going through in her own mind as I am sure its unbelievably frustrating and horrific.

Thanks for reading this

A concerned son,

Robbie

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  • Posted

    Hi Robbie,

    Thank you for posting your experience. I know how frightening it is to watch someone you love battle with this condition. May I say how great you are to help the way you do. Spending time talking to her and trying to keep her spirits up. I am sure she appreciates it very much.

    I do hope she gets the transplant very soon.

    Keep us informed of how she is doing.

    Tessa

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  • Posted

    Hi Tessa.

    Thanks for your reply, I find strength in keeping my own chin up for her. Obviously it takes its toll on everyone, but I keep that for myself and try to support my mum and dad as much as I can. I came onto the website to find information on what was going on with her condition, but have found that anything can bring these episodes on. It is unfortunate that COPD is an illness not in the public eye very much.

    As for my mum. She was released from hospital yesterday, and only because the specailists trust my father so much. You can tell when my mother is getting a little better as she starts talking a lot, and giving off about what she can, bless her. She deserves that privilage however.

    She was in a respitory ward for almost 4 weeks, and there were times were we honestly thought we were loosing her. This was especially the case when the doctors changed her medication after a few days improvement as she went from improving to hardly being able to move, worse actually than when she was originally admitted. This is no critisium of the efforts of the doctors, but they seemed to treat my mother by text book rather than her specific case. As she is on the transplant list I believe the specialists should be informed of any changes, and given the chance to air their concerns. An example of this was when her steriods where reduced by half rather than gradually as she is normally used to. On this occasion it was more mental than anything as she got so scared of having another relapse, once the specialist found out about this the steriods were put right back up again. This occasion made my mother flat again for a few days, and she was again kept in longer.

    I suppose looking back, my mum could have queried any change made by the doctors, but who does when everything is an absolute struggle and the fear of death is so great? I have a fantastic and honest relationship with my mother, and we discuss the inevitable openly between us. I hate to think of my mother giving up, but sometimes I think that it might just help if she did. Whilst she was in hospital she mentioned to me that she had thought this was the end as the excerbation was so bad this time, and she looked so low and for once I could not express what I felt, as I too tought this was it. It's quite a strange silence when that moment is brought up in converstation. I just hope that she is not taken off the transplant list, as I think it might just be the thing that depresses her.

    She was admitted into hospital due to the fact that her body was absolutely exhausted because there was just not enough oxygen getting into her system, even with the constant supply of O2 to her in the house. I suppose this made her system not want to work anymore, and I also believe it was putting tremendous stress on her heart which is another concern we have for her... It's endless sometimes! Her drugs have been changed now, so hopefully they will prevent this happening again as it has really scared my mum, and our family. It doesn't matter how many times we talk about it, or how many times we shrug it off, or how many times we cry about it, nothing at all can prepare me for what is around the corner and I feel for anyone else in my position but cannot imagine what it is like to be in my mum's shoes - I can only admire her strength.

    Whilst she was in the hospital, I built a path and ramp to make it easier for my dad to get her in and out of the house on her wheelchair. We've named this her skateboard park so she can have a use for it when she gets her transplant. Things like that keeps us smiling, which I believe at this point is the most important thing. Not only for her either.

    Thanks for reading this, it's helped me.

    Robbie.

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  • Posted

    Hi Robbie,

    I have been looking for patient experiences with COPD on-line for a module i am studying at uni (supporting individuals with long-term conditions), and found your experience as a son. I didnt known much about COPD until i researched it. I have to say you, your mother and father have been very strong and found your story touching, thankyou for sharing it. I hope everything goes well and wish you all the best.

    Ive had to look at services that are avalible for COPD, the British Lung Foundation raise awareness and spend a fair amount on research each year. Also in 2009 the NHS will have a national service framework for COPD. NSFs are about producing advice that will lead to working policies which take account of the needs of the patients and realistic about capability of the NHS and other organisations. You can find more information on the Department of Health website.

    All the best Chloe smile

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  • Posted

    Hi Chloe,

    Thanks for the words, I think it is best to be honest about these things because I would hope that by writing this I can help someone in my shoes. It is hard, but at least I am getting the chance to have some good times with my parents - I guess that's my silver lining.

    I am glad you are studying what you are, as I think people like you can only help the people who need support, even more so than my mother as I know there are people out there who have no one. My mother is more fortunate than most as she has her family 'Team Dixon'. If I can be any help to you I will gladly do it

    An update on my mum is that she is due to see the transplant team today, and I do fear what is going to come from this meeting. In the two months she has been out of hospital and with help from my dad, mum has been able to start getting around again, and doing little things like wash and dress herself - things I can't imagine struggling with. However, the latest episode seems to have taken a lot out of her in many ways and I fear that she has 'passed her window of opportunity' for the transplant.

    The progression of the disease, and strength of medication she is given takes a real toll on the body and they can only operate on people up to a certain point of time, and after that they cannot do anything for the patient. This is what worries me, and I can only imagine what it is like for mum, and my dad. I suppose the cliché looking down the barrel of a gun applies. Again, all I can do is support her the best I can, and really try as a son to put a smile on her face.

    I brought her an orchid a couple of weeks ago, and she usally kills them. So I told her she could out-live it which made her laugh a little!

    After reading this, I would hate anyone to think that it is all doom and gloom trying to manage this horrible disease. It's not at all. Sure there are times when we have to draw on each other, but they are outweighed by watching my mum smile and laugh (then coughing usually) and enjoy whatever time she has. She leaves it in Gods hands, and that works for her. We have a great family togetherness and appreciate each others company which makes it all the more enjoyable for mum. Mum and dad have fun too, then laugh and joke like kids and rely on each other for support. They play games when they can, watch films together and have a schedule of what time of the day to do things which has helped mum remarkably.

    The schedule is a spreadsheet which breaks the day down into managable chunks. For example, 7.00 - take a Nebuliser and medications. 10.00 - have some fun with dad. 12.00 rest. 13.00 - lunch. etc etc. Trying to stick to this has given my mum a routine, and has helped her energy levels in the days and helped sleep at night. So maybe if anyone has read this far, they might to try this to see if it helps. Talking to my dad is also something she swears by, they talk about the future and the inevitable and they talk about their worries which helps them both greatly. I suppose my mum finds closure in talking things through with my dad.

    Thanks for reading and commenting on my post, I hope my words reach someone and at least help them a little. Dealing with this is a serious pressure and strain on everyone it is close to... But that doesn't mean it can't be a little fun. They say depression is the biggest killer in COPD, and to me laughter is the best anti-depressent so maybe COPD and fun should come hand in hand? I'm certainly not a doctor, but I see first hand what works for my mum and hope that helps someone else.

    Thanks again,

    Robbie.

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  • Posted

    Hi Robbie,

    Thank you for keeping us up to date with what is happening to your Mother. You are a family with strength and fortitude. I can appreciate the way you are feeling about the possiblility of her not having the transplant now.

    Please let us know how she got on with the consultant and if they are still going ahead with the transplant.

    Warmest regards

    Tessa

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  • Posted

    Hi again Tessa - thanks for the interest.

    My mum went to the meeting, and she too was fearing the worst. Thankfully she has been kept on the transplant list after my dad talked the specialist through what they have both been doing. This was celebrated with my dad on the day with a few beers! Mum doesn't drink so we raised a can for her...

    The spreadsheet I mentioned in the previous post also included my mums stats (blood O2 levels, heart rate and steriod use), this showed a trend in the amount of steriods she was taking relating to the heart rate, then in turn the amount of O2 in the blood. From this they have found a way of keeping my mums heart rate down, reducing steriods and increasing physical activity.

    The tansplant team were originally concerned about the doseage of steriods my mum was using - up to 40mgs per day - and asked that these be reduced. Unfortunately when they were my mum's heart rate went up, and her O2 levels down. This made her pretty much bed ridden before her episode. My dad has managed to monitor the effects of this and now my mum is more active, on less steriods and has more blood O2. This is done by balancing the amount of O2 my mum is taking through her O2 gadget they put in the house, resting at certain times, and taking atibiotics advised by her local GP if there is any increase / decrease in the stats. And of course taking the correct medication.

    By using this method, mums stats have improved. Heart rate from 120 odds to 70 / 80 odds, O2 level from 90-93 to 95-97 and amazingly her steriods go from 10-15 in alternate days. Using the spreadsheet my dad created they can now see a good difference. However, it is coming into the summer so this may have an effect.

    I was home with my parents for fathers day and mum was able to come down stairs and join in with the rest of us. We used to go into her bedroom for any family do, but thankfully she was sble to sit in her living room and have a chat with her kids and husband. It sounds simple, but we could not have imagined this would happen when we were watching her in hospital in February. Amazing. She had the biggest smile on her face too, which makes it all the better for us.

    I believe the transplant team look at the psychology of the potential patients in every meeting, and luckily my mum is very positive about life and tends to live it as much as she can - even if it is with a wobble. My dad enables her to do this with the support he gives her, and I think the transplant team are very much behind them both. I think my dad's enthusiasm about the stats impressed the dr, and I think it really helps my mum.

    When my mum was told she would be kept on the list she burst into tears, which is unlike the old doll so I guess that shows what it means to her. My dad retired to look after her, and has always dreamed of owning a little boat on the Med, which is my mums ultimate goal. We always say that when she gets her spare parts, and passes her MOT they should chase that goal for the pair of them. I hope they can because they both deserve it, and it will give me a cheap holiday :o).

    I am moving house soon, and my mum wants to help so her next goal is to get out the house and help lift a couple of sofa's and TV's... Well, as long as she gets out and has fun, thats enough for us.

    Thanks again for reading, this has been a more positive post since a real weight has been lifted off my familys mind. As I said in the last post, there is no point in this horrible disease being doom and gloom because life is for living - however short or hard it may be.

    Like I say, I hope these words help someone somewhere because it's really helped me dealing with some aspects of what is going on with my mum.

    Thanks

    Robbie.

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  • Posted

    Hi Robbie,

    What an amazing post it has brought tears to my eyes.

    I am so pleased that the transplant is going ahead, that is wonderful news. But what has impressed me the most is how supportive you and your Father have been and how you have learned about her condition and worked tirelessly to improve her health. You have really achieved something to be proud of.

    I know exactly how your Mum felt when she came downstairs to join in the celebrations. I can imagine the smile on her face.

    It is good that she is so positive but even better that you and your Dad are positive too as that helps to keep her positivity up.

    Robbie, do keep us up to date with how things go and well done all of you.

    Tessa

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  • Posted

    Hi all and Bob (that's Robbie but as his Dad I call him \"Bob\"wink

    First off thanks for all the good things you have posted in this blog (blog I think that’s what it’s called)

    The health management system we use has improved Bob's Ma's life, her condition is still progressing so without the transplant it’s all about “quality of life” and that has improved.

    The system is so simple and shows up so much I can not understand why it is not in use for everyone with this condition. We can read the chart and pick up any changes and act on them BEFORE things get so bad that we have to be treated for a flair up in hospital with aggressive drugs, that’s expensive for both the NSH and the person.

    This condition is one of the one’s that all the family suffers from in one way or another especially if they are close as we are, when a flair up happens we all suffer, therefore the fewer of them the better for everyone.

    This health management system was born out of the frustration of not knowing what was happening, the lack of education for both the sufferer and the carers gave us a lot of problems and worry at first so a wee thing like this helps so much.

    I am told that the system is similar to the system used in I.C.U. why not use it sooner and nip problems in the bud ?, it’s a system of pre-emptive diagnosis were patens can be compared to a base line taken when the person is “well“

    We use 2 criteria, blood ox and pulse, you could use temp and blood pressure as well but in our case they do not change significantly.

    Maybe we can get a quorum to run the same system at the same time and compare notes.

    Robbie’s Dad

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  • Posted

    Hi again,

    Think the site mention here would be a even better place to start a post that allows everyone to compare notes - it's more of a general forum on COPD, and I believe that those who use it may find what my old fella has created a lot of help, and there are a lot more experiences there to draw on.

    experience.patient.co.uk/discussion_list.php?d=40

    Robbie (Bob)

    smile

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  • Posted

    Hi Tessa,

    This isn't a post about mum really, but I read another post in the site that you had put on.

    I understand you also suffer from COPD, so I wondered if you had anything like what my dad has done for my mum? Like dad mentioned, it would be great if you could compare notes as it might be a benefitial learning resource. It's great that we have a resource like the web to help, so it would be a pity if we couldn't use it. My dad is very into it, and has learned a lot from the internet - even the level of 02 to use when my mum was struggling and in a panic.

    I thanked my dad for putting his info up since I thought it might help someone else. We are very lucky to have him as a dad, or a husband. He isn't a doctor, but has improved his knowledge of COPD greatly through self learning. I think this is something everyone should do to be honest.

    Mum at the moment is bouncing along (touch wood) and she is looking forward to helping me move into my new house. It's really fantastic to know that she has some life this summer. She has little goals to help her along the way, and me moving is one... My sister getting married next year is a major goal which we are all doing our best to make sure she reaches.

    Robbie.

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  • Posted

    Hi Robbie,

    Yes I have COPD and bronchiectasis but also haemoptysis with the bronch. I have found your posts really interesting and would like to hear more. I think a discussion group is a very good idea and I am running it past the administrators at the moment. When I get a reply from them I will let you know.

    Meanwhile, please keep us up to date with your Mum. It must be wonderful to see her so happy.

    These days it is important that the you know as much as you can about your condition. The more information you have the better you are able to help yourself.

    Tessa

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  • Posted

    Hi again Tessa,

    I am sorry to hear about your conditions, I understand that life is hardly ever as you planned and I think you are very strong in discussing it and trying to help others.

    I totally agree about knowledge - I don't think there is any point in putting your head in the sand. I remember when my mum was first offered the chance to join the transplant list, she told me about it and I had always wanted her to go for it if given the opportunity. Mum was sceptical about it at first, as she was worried about loosing her heart in a 'heart and soul' sense, but I was a real advocate of the operation and tried to point out that they only wanted to take organs etc. SO, I went online and printed off a lot of information about the transplant and the potential outcomes, and the issues that can arise from it. I found this really usefull, and it certainly opened my eyes as to what would happen, before and after the op. I left all this info below my mums pillow for her to look at in her own time, in the hope it might raise her own awareness and give her comfort about the whole thing.

    Mum accepted the offer to go onto the list off her own bat, and that took a lot of guts - 'better to die fighting that go out with a whimper'. She, and dad, together with the doctors went through the procedures and the expectations of the team. It took my mum the best part of a year to get through the information I gave her, as some of it was quite distressing - the quality of life deteriorating, and the fact that the patient might not make it through the op for example - but in reading the stuff that isn't very nice I think my mum found a bit more determination to do it, and succeed too.

    I hope I played a part in her finding some inner strength, and I think that if anyone is in her shoes it is much much better to go out there and find info on what is going on with your body, no matter how bad it is because information can only help - just as my dad has found with my mum. With my dads hunger to understand the condition, he has helped my mum maintain a quality of life that she might have missed out on if he hadn't got onto the internet and googled 'COPD'. Like I did when mum was in hospital in February - I found this site, and its been a great help to me, and I am not even a sufferer.

    A recent update on mum... I moved house a couple of days ago and she was busting a gut to get out and help us move, well, supervise the move. She questioned coming down to help with my dad, asking if she'd be in the way etc etc, but there is no way she was missing it - I wouldn't have liked that since she was looking forward to it so much. We got her down to my new place, put her on my bed with the O2 on level 3, a long tube thing to allow her to nip to the loo when she needed (very important!) and left her with a book whilst my dad and I went out to get my stuff. When we came back we found the old dear sound sound asleep looking as happy as larry, so we woke her and she overlooked the operation and had some lunch before we made a second trip. Once we came back from the second run - she was asleep again. Third run - asleep... The most important thing was my mum was out and about, with some ability to stand on her own feet (so to speak) by herself. It was a great day, and I loved seeing my mum outside her room having a giggle in my house... I really couldn't see that happening a few months back.

    All this is tied in with finding information, and that's what my dad is doing with the spreadsheet and daily schedule - and is also why would think my dad is right about comparing notes about the condition. It would help 'Team Dixon', and hopefully other people too... My mum was asked a good while ago if she was lucky enough to get the transplant could the dr's have her old lungs for research - she said yes... So in an odd way, I know she would like to help others too, in a less intrusive way of course!

    Thanks again for the reply Tessa,

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  • Posted

    Hi Robbie,

    Great to hear from you and catch up on your news.

    Sounds like the house move went very well. I'm so pleased your Mum made it to your new place, even if she did sleep a fair bit. We COPD Mums are good at supervising.

    I emailed your Dad and told him we have set up a discussion group. It's a shame you haven't registered so you can join us. It is set up so that only people who have an interest in the subject can join in.

    I'm not doing too bad. Trying to keep as well as possible as I'm due to have a cataract op next Wednesday. It's like walking on a tightrope.

    Stay in touch.

    Tessa

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  • Posted

    Hi Tessa,

    Before my mum was put onto the transplant list she was advised to get any work done like dentistry etc as after the operation it would be very difficult due to the immuno-suppressents.

    She too had cataract operation on both eyes, and absolutely swears by it and does not regret it at all. So good luck with that, I am sure it will change a lot of things for you.

    I could register with the site, I don't think there would be much problem with that. I do after all have a real interest in the subject - not just for my mum but I really hope to help others too.

    Robbie.

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  • Posted

    Hi Robbie,

    Yes, do register. Your Dad has the link. It is not just for people who suffer with COPD but for people who have to care for someone with this condition. It is, as you say, pooling together all the knowledge gained so that it may be of help to others.

    When first diagnosed with COPD it is trying to learn about it and understand it.

    How are you finding the new house?

    Tessa

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