Week 3/4 in the big brother house: Well that was... - PMRGCAuk

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Week 3/4 in the big brother house

Burnley1959 profile image
9 Replies

Well that was the week that was..Everything seems to be going ok, Im still on 40mg pred. seen the consultant today a PROF L S TEH who did not install any confidence in me at all, I have seen her once on a initial consultation when I was in the hospital for about 15 mins maximum, no diagnosis and very little communication skills. The result of the meeting was that the PRED needs to be weened off with the help of Methotrexate, I need a consultation with a nurse who I am told will advise me on the pros and cons so that I can move forward reducing the PRED.

To be fair Im not overly concerned with the change, or what changers are to be done, as long as I can take small steps forward. These last two weeks have gone really well , very little soreness in the muscles and joints, Ive been doing 1-2km walks each day without much of a problem, so Im feeling pretty confident, I suppose the crunch time will come when the PREDs get reduced, I`ll cross that bridge when it arrives.

Now I think I finished the last post off lying in a corridor at Blackburn Royal in Lancashire waiting for a bed to become vacant. Eventually a bed duly arrived in the Ambulatory Emergency Care Unit ,to be assessed on the next stage of this journey. I was there two nights, each night I had what I thought was bad heart burn, sweating at night( and we are talking wet through ), while I was in A@E they gave me PRED, not sure how much but enough to make me feel ok, not great but ok. It was then they decided to move me to C1-C3 ward,I was there for 9 nights being treated for heartburn, and was given Gaviscon for the said 9 nights, probably the worst 9 nights of my life, the problem wasn't`t heartburn ,I was having angina attacks ,and during them 9 nights, and after numerous visits by different consultants not one of them recognised the symptoms for a angina attack, you see Gaviscon does not cut the mustard. On the 10th day they decided to start treatment and I was given 40mg PRED, previous to that day I was unable to walk or do very little else, lost a lot of weight. So coping with the so called heartburn ( ANGINA) and the, of yet, still to be diagnosed PMRGCA ( this was confirmed some three weeks later). The following day I could actually sit up and kinda wobble about.

That day they discharged me, no discharge paperwork , no out-patient appointment, had to get my good lady to ferry me out of the Hospital to the car to go home. Arrived home on a Friday night, the joys of my own bed, woke up Saturday morning quite early, felt a pain in the chest and had a heart attack was blue lighted back into A@E,absolute nightmare. to be continued.

So these last two weeks have been pretty promising my appetite has returned, I still get tired pretty quick, the sweating has gone , but jeez with all these drugs, excuse the ?? but the toilet is a nightmare and nowt much is working ( its far worse than man flu ). Stay safe people until next time.

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Burnley1959 profile image
Burnley1959
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9 Replies
Nextoneplease profile image
Nextoneplease

Hello again Burnley, I was wondering how you were doing 😊

Glad you’re feeling better now, but my goodness, wha5 a nightmare in the hospital !!!! What were they thinking?!? 😳

Good that you’re getting about now 👍

And since we were last in contact, both our footie teams have done well x

Burnley1959 profile image
Burnley1959 in reply to Nextoneplease

Cheers my friend, everything seems to be going in the right direction, including both football teams, we are on a good little run at the moment, Leicster tomorrow, which will be my first game this year. Congrats on the cup final, hell of a game. The hospital was a joke , even although not all, the nurses we so not bothered, and that Kinda hurts me to say that.

Nextoneplease profile image
Nextoneplease in reply to Burnley1959

You are on a good little run indeed, in more ways than one! Always liked Sean Dyche, a ‘proper’ manager in my view….

Good you’ve asked to see a different consultant, we have to be our own advocates, I’m afraid!

Know what you mean about some nurses, it also pains me to say this as my daughter is a nurse, but I know she’d agree you get good and bad, as with everything. Really sounds like someone needs to shake your lot up, though….😳

All the best xx

PMRpro profile image
PMRproAmbassador

Hmmm - preserve us from THAT medical unit! They spent over a week treating unsuccessfully for heartburn? Funny - I always thought central chest pain was assumed to be cardiac in origin until proven otherwise. Have they decided if it is PMR or GCA (I'd be plumping for GCA given your symptoms and the heart attack). There is an increased risk of stroke and MI in the first year after a dx of GCA.

IF it is GCA - a world name in the field, the newly retired Prof Dasgupta, doesn't rate methotrexate for GCA at all. Maybe the good lady should stick to her own field of expertise which she claims is lupus.

Burnley1959 profile image
Burnley1959 in reply to PMRpro

Wow and wow again. She really didn't know, which is a little bit scary from my end. She didn't know what drugs I was taking, didn't know the dates I was in hospital or if anyone had diagnosed me. Each time we tried to relate cardiology to the rheumatoid her stock answer was I have no knowledge on cardiology. I got the feeling she had not read my notes, which by this time is becoming quite a lot of paperwork. I have asked to be seen by another consultant a Mr brockbank who I am told is very good.

PMRpro profile image
PMRproAmbassador in reply to Burnley1959

Sounds like a plan. She may well not know anything about cardiology - but in that case, she needs to find someone who does! But she doesn't sound much of a team player.

Telian profile image
Telian

I’m pleased you came through the heart attack but speechless that the hospital never thought to have a cardiology assessment! You remain in good spirits too. Take care. 🌺

Sophiestree profile image
Sophiestree

Oh my goodness Burnley1959... I did wonder what happened to you. I was hoping it wasn't the horror of finding out my brother in law was Mick Docherty. You have had a dreadful time and your treatment has been lacking to say it mildly.

Great to hear you are feeling well enough to go to a match though.

I'll be crossing everything for you with the new consultant. I think you can tell them that you feel very let down by the whole process that had to end with your heart attack.

It is terrible....

Good luck

Burnley1959 profile image
Burnley1959 in reply to Sophiestree

Cheers sophiestree. Feeling rather pucker today. Going out for my walk then tonight on the turf to watch the mighty clarets hopefully win.

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