COPD

[Anndylan]

My husband has severe COPD. It was mild until had a AAA operation two years ago. Sadly he also lost his leg following the operation. The COPD reduces his ability to use this protheses and he is frequently in hospital due to chest infections. Our life is very restricted. I am looking for ways to improve his breathing so that our quality of life can improve.

[Watfordgirl]

Hello Anndylan, welcome to the site.

You and your husband have been through a lot, to say the least. It doesn't seem fair that some people have to put up with so much, but that's not a helpful thing to say!

You'll know that one reason your husband's COPD has got worse is because he's less mobile.This weakens the muscles, weak muscles need more oxygen and that increases his breathlessness. Also if he's less mobile he's less likely to shift gunk off his chest, it will get infected and he'll go back into hospital. Lots of vicious circles going on, Anndylan.

I think you both need to be speaking to your GP and Consultant about exercise, preferably Pulmonary Rehab, with or without his prosthesis, breathing exercise - lots of physiotherapy in general! - and checks on his medication and inhalers. A good fluid intake and a healthy diet. I'm sure you're doing what you can already but it sounds as though you both should have more professional help.

Why don't you phone the nurses on the BLF Helpline - they're very good. And do please come back to us.

Sue x

[Anndylan in reply to Watfordgirl]

Thank you Sue. It has been a very big change in our lives. My husband is in and out of hospital with numerous chest infectinons which cause him to become highly hypoxic. He almost died recently. This can be very stressful. Unfortunately, he resists any form of exercise and has b come depressed. There seems to be very little help for us in my area. Even the Respiratory Team only advise on the phone so I am finding the situation difficult and caring for my husband a big responsibility.

[Watfordgirl in reply to Anndylan]

It's a bit of a lottery as far as provision in different areas is concerned. Is your GP surgery helpful, and do they have a respiratory nurse? People are supposed to be supported so that they can manage at home but you're obviously not getting that. I'm not surprised he"s depressed.

Try the BLF helpline -0300 030 555, during office hours, Monday to Friday. And do let me know, if that's all right with you. x

[Anndylan in reply to Watfordgirl]

Thank you again Sue. I will call the BLF you suggest. but do not see what help they will be able to give me if there is not a support system in my area.

I think you are right about provision being a postal lottery because other than our lovely but very busy GP and an excellent Consultant we have received no other help. Our GP advised me to keep my husband out of hospital if possible because he is highly susceptible to infection.

After his last hospital discharge I contacted our local Respiratory Team myself. At first they were reluctant to even come and assess my husband because the Consultant that our GP had referred us to is in a hospital outside our NHS Trust. The RT at this hospital do not think they should become involved because they would not be accessible in an emergency. They did assess my husband for Home Oxygen but as he retains CO2 he was not considered suitable.

Our local RT team did eventually visited and assessed my husband. They advised him to use his puffer more often. They only offer telephone support and suggested that I should go with my gut feeling and call an ambulance if I had concerns which is what I have been doing for the past two years.

We did discover during the RN's visit that they run a Respiratory Clinic in the local Cottage Hospital within walking distance of our home. How is it that nobody informed us of this Clinic before? When we asked whether the Clinic would be of help to us I was told that they had a long waiting list but maybe he could be offered an appointment in about six weeks. That was over a month ago and we have heard nothing.

I am feeling disillusioned and totally isolated. My own health is beginning to suffer and all I really need is someone to advise me when I think he may have an infection brewing and the beginnings of hypoxia so I can avoid sending him to A&E.

[Watfordgirl in reply to Anndylan]

Oh dear, you're at the end of your tether, and I can understand why.

You're not going to be able to change the whole situation at once. It's going to be bits at a time.I still think talking it through with the BLF nurse would be good and you won't lose anything except time.

Have you got a pulse oximeter to check your husband's O2 levels? - and don't forget his finger needs to be warm.

If he's a CO2 retainer has he got a BiPAP machine to use at night? Would this be something he'd resist? It gets rid of the CO2 which tends to collect at night. I have one and to begin with had 16 hours O2 in 24 hrs. I don't know who you could raise this with to begin with - GP, Consultant, Respiratory Team?

Ask questions about the Respiratory Clinic and how long his wait is likely to be. He needs fast-tracking. I'd phone the Cottage Hospital for a start, then GP surgery.

Would it help if your GP would agree to a weekly, say, visit from a district nurse to check your husband and to be of some support to you. I know they're not specialists but you need someone!

Look for a change of symptoms - more breathless, change in sputum, temperature going up and ask for a doctors visit if you think another infection is starting. Have they given you antibiotics and steroids if he does start an infection?

Sorry - I feel I've battered you with questions. You haven't had or got the support you need and someone there has to help. I can't do anything to help but I am here and I will keep an eye for a message.

If I've suggested things that just won't work, then say so. We'll think again.

Please look after yourself as well. xxx

[Anndylan in reply to Watfordgirl]

Hello again. Things may be about to get better. I went for my flu injection at our GP's surgery today. It was given by the nurse who usually takes my husban's Warfarin blood, so she knows our situation. We chatted and I told her I was feeling a bit let down by the system needs more help and advise. This afternoon we had a call from the Cottage Hospital asking my husband to attend the Respiratory Clinic. It might be a coincidence but I do wonder if the nurse realised I was reaching the end of my tether.

Thank you so much for your support. I really appreciated all your suggestions. I will be following some of them up.

THANK YOU!!

[Watfordgirl in reply to Anndylan]

I'm so pleased! The nurse may well have helped things along a bit. The important thing is getting into the system and being noticed! I hope your husband's pleased as well, and that both of you get the support and advice you need. Do keep in touch and let us know how you"re both getting on.

Take care, Sue x