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About petermeach

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  1. Oh I am not in the slightest stressed, I don't do that. It's a bit annoying being stiff and sore but I can put up with it, it's odd suddenly being 30 years older! You should see me getting up from a chair. I have to do a 6 minute walk test, I can't see that going well. The mycobacteria sounds worse. The hospital took a lot of blood samples and I'm to have another CT scan shortly. It sounds harder to knock off than actual TB, I think that is 6 months of pills whereas this is 2 years and might not work.
  2. Thanks for that. The links are useful and interesting even though I don't understand a huge amount of what they are saying. I get the general drift which is probably enough.
  3. I went to see the lung consultant at the hospital the other day and told her my muscles and joints are stiff and ache. This is a new thing in the last couple of weeks. She said this was normally treated with steroids and that she really didn't want to start me on steroids, I think it is sclero related. Also I had a chest xray just before seeing her. The previous one showed voids in my lungs which have got worse. This is like tb but not tb, she thinks non-tuberculous mycobacteria. She is doing more tests. There is a treatment, 2 years on 3 different antibiotics. Apparently there are potential
  4. Viagra works a treat, I barely get out of breath going upstairs. It's quite a short lived effect though, hence having 3 a day. My problem is the PAH. I'm not sure how the connective tissue disease is affecting it. The Brompton person I was talking to didn't know either. I'm going to see the lung lady in Chichester in a few weeks so I shall ask her. I couldn't cope with the trip either, I shall have to think what to do if I have to go there again.
  5. I sincerely hope not, at least for a long time. I have to see the rheumatologists at Chichester some time, don't know when yet. I assume fairly soon, I seem to get a very prompt service, i.e. pushing in the queue. He was awful, it didn't help that I wasn't feeling well but it was all so unnecessary
  6. That wasn't a nice day. The Brompton was fine but the trip was awful. I was supposed to be picked up at 5.30 for an 11.30 appointment! but the person due to be picked up at 4.30 from Gosport bailed and I'm not surprised. I was given the standard set of obs, ecg, xray. The concern is the PAH and not the sclero so I was given a viagra and then had my blood pressure monitored for a couple of hours. Was also given quite a bit of stuff to read. I came home with a big bag of viagra. Hopefully I will get more used to it because I feel queasy and have a headache. Drive home was awful, I was sick.
  7. Well it is just a day trip. Apparently admit just means 'to the hospital'. They have also allocated me a bed which seems a bit over the top, a chair would be fine.
  8. 'stay there for a few days' Ah, the letter says 'admit', I had assumed it was a one day trip. That's a bit of a problem. I have an elderly, sick and won't last long cat here so I have to get someone to look after him. The only person is my ex-wife who would reluctantly do it (cat wakes up early and howls!) but not on the day they want me to come up, it's her brother's funeral. I'll ring the Brompton on Monday to clarify this. There can't be many tests I haven't had, I've had the lot and they have all the doctors.
  9. It's a complicated old thing isn't it? Everyone seems to be different. The lady who rang from the Brompton said "Oh we'll arrange transport", which I was pleased to hear. I read those appointment notes, very sensible and readable, a useful page. I wish there was someone who could go with me but there isn't. I do have a possible problem with the size of the hospital. St Richards in Chichester is quite small and has lots of wheelchairs for those who need them although I don't. Southampton on the other hand is huge and I can't walk it. Also there are very few wheelchairs. I had an appointmen
  10. Oh dear, I can't walk for 40mins, I'd have problems walking through Victoria. I get very out of breath very easily from any exertion at all. I've asked for transport. I can't drive either as I had a brain abcess at the end of August and spent a month in hospital. Not a good year all round. I get taken to hospital by patient transport. This was privatised in West Sussex from 1st April and is a disaster. I should have had 12 trips to St Richards with them since 1st April and they have managed 2, they just don't turn up. Of course I'll tell you what happens in the hospital, it's 6th June
  11. petermeach


    I'm not sure if I qualify to be here. I had a letter from the Brompton today saying I had scleroderma related pulmonary arterial hypertension. This is not exactly a good thing apparently. I don't have any of the external symptoms people talk about except for Raynaud's but I understand it can affect just internal organs. I have to go up to see them at the beginning of June which will be a nightmare journey. The letter says admit me, I think this means appointment. Hope so. Not sure what to ask really. Does anyone else have this or am I in the wrong place?
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