Question Question?: Hi my Husband is... - British Lung Foun...

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Question Question?

stvalentine-33
stvalentine-33

Hi my Husband is finally seeing a respiratory consultant on Sunday . Many of you have suggested that we write the questions down that we want answered( thank you ).

My Husband said he is scared , I can hardly blame him , the last time we saw his heart consultant he said "what does your respiratory consultant think about your asbestos disease ". This came as a double whammy as 1, we didn't know he had an asbestos problem ,2, we had never been referred to see a respiratory consultant.

Whatever the outcome ,our questions relate to , improving his breathlessness, lack of appetite, sheer tiredness, fluid still in his body ,. I am sure there are a million other things to ask, any suggestions would be welcome.

I feel absolutely saddened by this ,and feel at a loss regarding the " asbestos disease", it sounds so awful , my Husband is obviously very down , we are both struggling , I am really hoping for something positive . Thanks x

21 Replies
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This needs a multi disciplined approach,you must ask your husbands new respiratory consultant to communicate with your hubbys coronary consultant as to the best approach for treatment for him,the two conditions will have corresponding features that 2 minds working together are better able to deal with.easier to say but harder to achieve,as its a first diagnosis you are probably wiser to listen first and then ask questions about those things that confuse you most,don't hesitate to ask for written explanations and handouts if they available.and don't expect all of the answers to all of the questions as it will take some time for you to absorb all of the information.

Good luck on the day

Ski's and Scruff's x

Hello stvalentine-33 ,

I am wondering how the heart consultant knew your husband has (?) asbestos related lung disease? How was it diagnosed? Who diagnosed it? And why weren't you told. That's where I'd start. If it was a surprise to you then I think clarification that this is indeed the case is necessary. Did he have a spirometry test? Any x-ray? CT scan? A firm diagnosis is needed to treat the disease. What are his saturation numbers like at rest of when ambulatory? Does he need supplementary oxygen? My two cents. 😊

I think you probably have a list of symptoms that you are going to discuss with the consultant already. Please tell your husband not to be afraid. The fact that there is an issue with his breathing needs to be addressed, as he can get help, and he CAN feel better. but this won't happen without expert help and guidance. He may need to work hard for it through the right amount of exercise , rest and a good diet. He may also need to go on medication. But all a small price to pay for easier breathing. Go into this appointment with the mindset that it will help things get better. He still has so much life to live.

Sending best wishes for a productive appointment,

Cas xx🌿🌼🌿

Hi when my Husband was admitted in August 2019, it was with fluid overload, previous to this he had been healthy. The diagnosis at this time was heart failure and atrial fibrillation, this was a huge shock, as he hadn't had symptoms. Whilst in hospital he had a chest x-ray , mri scan , ct scan, when a doctor did the ward round he said incidentally there was something on his lung? fibrosis? He asked if he had ever worked in asbestos /paint/chemicals etc, we weren't sure but as he was a manual factory worker , quite possible. I asked if he would need referring for this, he said "we need to deal with the heart issue" .

So here we are 8 months later ….we have had no lung tests whatsoever, so you can imagine "asbestos disease" has been very worrying. As he is so unwell , I am hoping you are right about treatment , it is so sad to see such a huge change in him . Thank you so much for such a positive reply

Two great replies there stvalentine-33 and I hope they’ve helped. I just want to encourage you both to hold your heads high, listen and ask whatever you need to ask. It’s good that you will be there too as two pairs of ears are better than one.

Good luck for Sunday. Xxxx

Think the Excellent guys have covered everything here. Hope all goes well. And you depart feeling more hopefull moving forward. Please keep in touch and let us know how you get on Brian

One positive is you are both seeing the consultant.I would want to know my full diagnoses and what treatment they propose to do. You may need to sit and listen without questioning at first. This type of illness often needs what they call a multi disciplinary team treating you, it might be worth asking if they propose to do this with your husbands care & treatment. If so several doctors will be monitoring his health. Good luck with the appointment and hopefully some follow up appointments to get things sorted out as it is more than one thing to consider. Best wishes to you both.

Oshgosh
Oshgosh
in reply to katieoxo60

The information in this post will be very useful for you

Cant add anything to the excellent advice already given stvalentine-33 , except to wish you well and dont be afraid. Its always a worrying time when first diagnosed with any disease but knowledge is the key to dealing with this. Gather as much as you can then take it from there, its surprising how much strength we have when needed. Best wishes Irene x

All best wishes and best of luck for your husband's appointment on Sunday.

Hi there, I went to see a lung specialist at the royal Brompton Hospital, my wife was not allowed to come with me in the assigned hospital car, due to lack of space???

I did take a list of questions with me, as I had been exposed to asbestos during the 1960s, it is better to have two people as sometimes there are to many questions, however as I am a positive and inquisitive person I asked the questions that most people would be afraid to ask in case the answers are not what they want to hear.

In my case and I stress in my particular case, I expected to have another 2-7 years left, which for a 74 year old is not bad, but I asked what it was in reality for me, I was told months rather than years.

Now because of the type of person I am, I was not phased by the answer, even now I can laugh and joke about it. If you have a positive attitude, and a firm believer, then whatever the questions you ask, be prepared for the answers, which I hope and pray that your outcome will a lot better than mine.

You do not say what your husband has? But Asbestos is a long term thing. And could be nothing more than a chest infection.

God bless you and take great care and be positive

Ernie

Sending you and hubby the very best for your appointment. The Dream Team have given you excellent suggestions. Sending Hugs XXX

I wish you good luck with your appointment and will pray you get the answers to your questions and hopefully some solutions as well.

Perhaps you could say how scared your husband is.

Ask how they can improve his quality of life.

Ask about relief from breathlessness.

Mention lack of appetite

Asbestosis

Leave the pad on the table and write stuff down as you think of it.

I do hope things go ok for you both

Thank you so much x

Stay positive. I was sat at doctors the other morning awaiting my annual COPD check and I was chatting to a lovely old couple who told me that consultant had told him that due to his lung damage from asbestos, he only had about 9months left, that was well over 3years ago and he looked and sounded like he had a lot of years left.

Thank you so much, will do our best to stay positive, it has just come as such a shock as he was so well prior to this x. ps. hope that you are well today

Hope you and your hubby are as well as can be today, best wishes for tomorrow x

As questions occur to you write them down. I print them out with spaces between and my lovely consultant jots down answers.Your case is different to mine so your questions will be different. Are you receiving benefits for asbestosis? Isnt it about compensation or something?

Thank you, sounds like you have a lovely consultant , after tomorrow we will know more hopefully. Thank you for the link x

Have a look at this.This explains the industrial injury side of it.

blf.org.uk/support-for-you/...

Thank you

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