Magic Pill?

I had my follow up meeting with the hospital lung consultant yesterday. I did not see the one before that got my information so wrong I thought I had some one elses diagnosis! But a very pleasant spanish lady. Who looked at my latest x ray (previous one had not) and stated that from what she has seen I do not seem to have damage from Asbestos yet, But it is one of those evil products that can sit there without detection for many years! What shocked me was there seems to have been a communication with my cardiologist as they explained how both my conditions are not helping each other. It seems the decision not to install the pacemaker and then ablate the sinus node making me pacemaker dependent was more because of the effect it could have to my breathing? Cardiologist has stated that would not survive any other operations!

I have lost weight so that is good news. I have been told that they will see if I can go to PR again and I may find ways of coping with it better. Plus I am going to have another sleep Apnea test as the last one failed as I only had it on for 3 hours and slept for one of them. My wife confirmed that she has seen and felt me stop breathing at times, I am still waking gasping for breath but not every day. This time I did feel that I was been dealt with and understood the problems I have in my daily life.

The negative side was that the conditions have shown no improvement and it is very important I do not get any infections or it could shorten my prognosis or worse?

Her closing words were If I could give you a Magic Pill I would, I am sorry all I can do is try and make it more comfortable for you.

I have Restrictive Lung Disease, Pulmonary Fibrosis, Paralyzed Diaphragm, Atrial Pulmonary Hypertension, Atrial Fibrillation, Tachycardia, Arthritis, Reflux and one or two other things that pop up from time to time like Gout and Migraines.

My Lung capacity is 57% upright 44.8% when flat. Process O2 well but do not get enough in once I go from sitting.

Be Well

15 Replies

  • Dear Offcut, my very best wishes to you. I hope you can avoid infections as much as possible. Are you considering wearing mask in public etc, and helping your immune system with natural remedies? Best of luck- as you say: be very well.

  • I read a few reports on masks and it does seem that they can be more of a problem than a cure sometimes. Unless they are a complete barrier to bugs and microbes and do not become incubators of your own bugs?

    Thank you for your kind words.

  • Glad you saw a Consultant who bothered to read your notes. Makes such a difference doesn't it. Hope it has made you feel more in control. It's good the Asbestos is dormant. My brother was in the engine rooms of ships when he was in the Navy and asbestos dust was all around. He was told 15 years ago he had damage to his lungs from it but is still going strong active and not on oxygen. Good luck with PR course when you go. xx I'm still waiting.

  • Excuse the pun I am not holding my breath on a date to soon :) Has your brother made a claim under the asbestos act?

    It is not as easy as they claim as you have to prove it was 100% through asbestos so any documentation you have confirming it will help.

  • Thanks Offcut very useful link. I have forwarded it him as he hasn't made a claim. Will inform you of his reaction and decision. I know he hasn't done anything about it to date. Are you going to make a claim? The 100% I would think is difficult for most people to prove. Thinking about it after 20 years in the Navy he worked on refrigeration ship maintainence in the docks. I see that as a problem..

  • I think from what my consultant has said until it decides to eat me they would be hard pressed to put anything in writing unless the do a biopsy but they will need due cause for that.

  • I'm glad that you had a reasonably satisfying consultation, as so often consultations are just huge disappointments. Sounds like they are doing their best or at very least trying hard. It's difficult for you having so many conditions to cope with and I admire your courage in handling it all. I'm also a little bit envious of an FEV in the 50's :))

  • I would rather know the full hard facts than be fobbed off every time. I am beginning to think that I now know more about RLD than my GP I was grouped in the obstructive group for years and the peak and O2 results at rest were of no use at all. It was not until I found I was working with the evil fibre of asbestos I got very assertive about more tests. Eureka!

  • Hi offcutts yer is not anything we would like to hear but at least ya getting some where now.

    Thay makje you piss the way everthings a secret like we are not capable of understanding.

    Unlike others i have been able to prove via F.O.I where i was exposed to asbestos and dwp have acepted it becouse of breaches of health and safety law and my pics when it comes to asbestos removal and demolition .. but becouse it was a school and its all a secret and am being stone walled.

    But becouse of my gp complaint about my docs trying to kill me and me trying to do doc thay will not confirm as thay dont want to give me everdince to be able to do doc

    But given my problems and as its bottom of my lung that have been destroyed and now have guts trouble i hope its not asbestos related but am sure all find out sooner than later given more test

    Even IIDB are as bent of F### did not load my scan stuff in order to prove extent of lung damage .. totaly did not want to talk about emphysem copd or emphyseatious changes or destruction

    Yet was to quick to blame food am eating and its adbestos content ... so thay all know that but the nit telling public what the eating and asbestos in food.

    Must think workers are thick or something.

    Anyway good luck with claims as you can see what we are up against

  • Hi Offcut I'm pleased you got to see a understanding consultant they are very rare these days. I think if you know what is wrong with you its half the problem and for the other half the magic pill that's this site where else can you go have a laugh get sympathy and pick up some good tips, keep smiling mate

  • always :)

  • Dear Offcut,

    I'm really sorry that the previous consultant messed you up and glad you could get information from that Spanish lady consultant. I hope for you that you get the best treatment following those multiple diagnosis.

    PR? Well at least, the nurse and physiotherapist will assess you. Gentle exercise to maintain your muscles is advisable. I'm exploring Qi Gong because it concerns breathing with movements to keep the energy and your body functions. Hope you get the best treatment. Friendly hug.

  • I was a 3rd dan karate instructor and wondered if I could do Tai Chi but never found one that fits in with me.

  • Hooooooo! Offcut, you should refine Tai chi at home, then! Have you got a big/small garden? I used to frighten the neighbours and attract their kids - the latter were really interested!. I do this indoors now. Don't give up! Especially as you know all about Qi or Chi

  • I am waiting on another PR so might get me motivated.

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