1st visit to rheumy PART 2.sorry it's long.

[mattcass]

The first thing i noticed when i met my Rheumy he did not take his eyes of me for a second i thought he was looking for any RA issues but with my lung probs i have no option but to walk very slowly when i sat down he asked if i was ok as i was out of breath and could hardly talk, he looked at me and Fran as if to say can you give me a quick run down on yourself which i did, but he was very professional he was reading my file page by page talking and listening to me at the same time as well as looking at his monitor within 15 minutes he was up to speed, He then said at this time his hands are tied as far the meds for me still have to be discussed with my chest doc but we will update all the tests over the next three weeks and then we will meet the chest doc and can sit down and decide what is the best road for me to go down,Then it was my turn because of all you lovely people the knowledge on drugs your symptoms and advice reading your questions and reading your blogs,I started to ask him about the drugs in names and dosages i thought that were available to me were they still on the agenda also what was the worst scenario if i was prescribed them all he would say was we would discuss this in more detail when we see the chest doc, but did say we have to avoid any Lung infection as at this stage it would be fatal WOW! and one of the first thngs we have to do is cut the Steriods by at least 10mgs a week for the next three weeks, before we left he promised that he would introduce me to all his Rheumy team his nurse physio ect over the next three weeks, The consultation lasted about an 1 hour me and Fran were very impressed by him and has promised he will contact me himself about any issues that may affect me and make sure i am not left in the dark, When we got outside Fran looked at me and said she was very proud of the way i conducted myself and was so impressed by my questions and kissed me on the cheek i told her i have you all to thank for that,She knows I have been an angry man for three months and have tried pushing the people near me away mainly because the situation i am in is mostly my fault nobody asked me to smoke 60 woodbine or 40 capsten full strengh a day for 30 years, I did stop smoking ten years ago which helped me as i dont think i would be here today, I am not looking to blame anyone but my Rheumy said someone withdrew my referal from the rheumy in tray and he feels he owes it to me to get answers.looking forward to my 2nd visit Mattcass

[Hidden]

Well done. Am in the same boat as you, but lungs only work properly when sitting down on 15L per min oxygen. Still it's better than the alternative. Also we wouldn't say it was all our fault if we had heart probs and most ofthem also caused by smoking, so put it sown to luck, genetics or a rare side effect of RA. At present I am on 35mg pred a day and 100mg azathioprine, both good for RA and PF, just as well really. One good thing haven't had a flare up since they found the fibrosis and was really worried about that. Stay positive and try to take an active part in your own treatment as only you really know what seems to be working and what isn't. If you are really organised you could keep a diary it helps keep the mind focussed. Sorry now waffling but good on you and well done.

[Hidden]

I have been touched by your story. You cannot blame everything on yourself though. 30 years ago, cigarettes smoking was a fashion and was advertised everywhere. No wonder so many people started smoking at that point. This also includes me.

The good thing is that you have now took the courage to stop and I really hope that your health will improve. Having an illness in the lungs on top of RA will take a lots of courage from you. We are all here for you and it looks like that you also have a good rheumy team behind you.

Take good care of yourself and try not to be too hard on yourself.

[Hidden]

such a touching story too, it is the start of your latest battle x

[Hidden]

I agree that being angry with yourself is pointless - especially when you gave up smoking ten years ago. I would say it differently if you were still smoking but you aren't and you have enough to fight by way of lung disease and RA without fighting with yourself or those who live and care for you as well. So pleased that your rheumy sounds so thoughtful and straightforward and generally thorough. Well done. Tilda x

[Hidden]

It's great that you had such a positive experience. It must be so reassuring to know that your Rheumy is up to speed with your case and has planned how to take things forward, especially with regards to liaising with the chest specialist. Plus you impressed your wife!

Your anger is understandable. I should think most of us know the frustration of feeling angry with ourselves. You sound as if you are moving on from that, though and why shouldn't you? All the very best to you & Fran,

Luce x

[dall05]

Hi Mattcass, Iv'e learned something from you now as I never knew HealthUnlocked had other sites for different conditions. I just had'nt given it a thought to look,

I'm glad that some of my information was of use to you before your visit to the RA clinic. Its always useful to go armed with a little info of what is to come.

Try not to be so hard on yourself about the smoking as it may not have anything to do with your condition. I never smoked, yet still ended up with Pulmonary Fibrosis which seems to have been caused by RA. My lungs were wrecked in a few weeks and will never recover so I now live with 25% lung function and can still do an amaizing amount but at a much slower pace.

Its time to stop being angry and let those around you help because thats all they want to do.

My family have been amaizing and have put up with so much. I think Iv'e been a pretty good patient but there has been a few lows, where I hav'nt been easy to live with.

It seems as though you, me and Alwayssmilling are in a right old pickle but we'll get through by helping each other won't we.

Keep taking the pills and exercising as best you can my friend.

Tony.

[mattcass in reply to dall05]

Hi Tony Thank You, a lot of the meds i spoke to him about came from you he seemed impressed that i knew what i was talking about in fact i suprised myself, i will keep you updated on my progress.Matt

[miss]

HI mattcass i think your rheumy team seem very on the ball. which will be of a comfort for you and your family. i admire your attitude it will help you. All the very best to and your wife.

Best regards xx

[Dotty7]

So pleased you are getting some help. Don't blame yourself for the way your lungs are - autoimmune disease is a b****. You didn't choose this or cause it.

Dotty xx

[jeanabelle]

We all know how much it means to us when we have a doc that really pays attention to us and actively listens to us. It makes a huge difference to us. I am one of the lucky ones, my doc is a darlin'. We were talking about tattoos on one occasion and I showed him one that I got on the bottom of my back when I was a mature student ( I had it done as a dare!!! ). He laughed away at me. One time when I was very very bad but he couldn't find an appointment for me in his clinic so he said if I could get to the clinic at 8 in the morning he would see me before the clinics actually start! He spent a full hour with me and gave me a really good going over and answered a hundred questions. There aren't many that would put themselves out like that, is there. I know how lucky I am and I'm very grateful.

[helixhelix]

That's great, makes such a difference to have trust in your Doc. Forget about smoking, that's in the past, and try to concentrate on having the best future possible. ( I've just about forgotten that I smoked!). Polly