The bad news and the good news

[Classicmichael]

Hi, anyone who has read my recent posts know that I have had a pretty rough time of it when taken into hospital with blood in my urine and coming home feeling very weak after suffering from a series of disturbing events and appalling neglect and I was very grateful to have written an account of this to get it off my chest.

So it won't surprise you that shortly after dischage from this Hospital I began to feel really unwell with chest pains and severe breathlessness.

Unfortunately I had to to be rushed in again and this time needless to say I went to a different hospital. They were wonderful and after a series of tests and a special scan of my chest using a radio active dye I was told that I had a pulmonary embolism.

I was discharged after a couple of days and shown how to inject Klaxine into my tummy and put on a dose of Warferin which also involved having a nurse in. each day to take blood in order to evaluate the INR (whatever that is) so that they. Can adjust the dose of Warferin.

I am pleased to say that after a week of Klaxine plus Warferin I am begining to feel a lot better and being fed things like liver and bacon and steak by my lovely wife to build my strength up.

The remarkable thing is that my PMR symptoms have at last settled down dramatically and after 21 months of yo yoing on prednisolone I am now down to 13 mg so I am feeling rather pleased on that front.

I have thought about sueing that awful Hospital and my daughter has asked me if I really want the stress of it all.

The truth is I have been to hell and back but it feels good that I am getting stronger every day and for that I feel unimaginably grateful so I am putting this behind me for my own sanity.

Thank you for allowing me to share this journey.

Mike

[DorsetLady PMRGCAuk volunteer]

Yes Mike it is very stressful suing anybody or any organisation within the NHS - been there.....blah, blah , blah. You have to be really sure you want to before you start the whole process - quick it is not. You also need to be 100% sure of your facts to present a good case. You need to go to a firm of solicitors who specialise in medical negligence cases. If you go on a no win no fee basis they will want to be sure they have a good chance of winning before they take you on. It really depends on how much your life has been affected and how strongly you feel about challenging what you consider bad practice. Good luck in whatever you decide. DL

[Classicmichael in reply to DorsetLady]

Hi Dorset lady as you said it's a long drawn out affair taking on the nhs and trouble is you need to be fit to take it on.

I do however feel a lot better airing my views to fellow sufferers in order to warn others of what can happen in the wrong care.

Thanks for sharing

Mike

[DorsetLady PMRGCAuk volunteer in reply to Classicmichael]

Hi Mike, yes I quite agree on many counts. I'm not normally a complainer about the NHS, in general they do a great job in difficult circumstances. They saved my late husband's life on more than one occasion, for which I shall always be grateful, and a brilliant ophthalmologist saved the sight in my left eye with his quick action.

However, sometimes they (individually and collectively) do make a mess of things, and then they need to be taken to task, like any other organisation, in fact more so because lives are at risk. I think most people, myself included, if they are convinced that a thorough investigation has taken place, lessons learned (that old cliche), and maybe most importantly apologies made (rarely) then they are happy with the outcome.

No matter what my, then, GP does will bring back the sight in my right eye, but if she, or her colleagues diagnose PMR/GCA in time in the future, then that, to me, will be a success.

I still trust the medical profession, but I question them more nowadays! DL

[Classicmichael in reply to DorsetLady]

POSTSCRIPT TO DORSET LADY. Just seen your reply, I agree with what you say and if I can get a new urologist to put right the botched surgery that was carried out on my prostate six years ago I will certainly be seeking an apology.

May I say that your own story and courage in dealing with the loss of sight in one eye is an inspiration to us all particularly as you give your time to helping others on this forum.

Thank you

Mike

[DorsetLady PMRGCAuk volunteer in reply to Classicmichael]

Mike, many thanks for your kind words. But as my late hubby would say, it's more down to bloody mindedness than courage. As the old Army adage goes "Dont let the b******ds get you down" . DL

[PMRpro Ambassador]

Good to hear you've turned a corner in some ways. Less good to hear you have a PE. However, it sounds as if they caught it in time - they can make you pretty poorly!

The INR is something you'll be living with for a while! It stands for the "international normalised ratio" and is worked out from the time your blood takes to clot. Normal is about 1 (just over or just under) but when you take warfarin it means your blood takes longer to clot and protects you from clots forming in your blood vessels and getting stuck in limbs, lungs, heart or brain (causing a DVT, PE, heart attack or stroke respectively). They aim for a value between 2 and 3 - so you are less likely to have a clot but not bleed too badly if you cut yourself. The clexane does a similar thing but has to be injected and doesn't last as long - so they add the warfarin until the "consistency" is right - and once you know the right dose to keep the INR stable you won't have to be stuck so often.

My husband is on it for life because of a protein c deficiency which makes his blood clot easily and he had a DVT. I'm on a similar drug because of atrial fibrillation and will also be on it for life. You may be able to stop it at some point if you are lucky. We don't find it much of a bind - amble along to the phlebotomy clinic at the hospital to have blood taken once a month, pick up the results a bit later and take a bit more or less or stay the same as appropriate. Here they take a "proper" blood sample, in the UK I think they do finger sticks. We eat everything we want - nothing seems to make much difference. What you shouldn't do is get adjusted on your usual diet and then suddenly change it drastically - it's fine to eat dark green veg as long as you do that regularly but it isn't a good idea to eat loads and loads for a couple of days when you were adjusted without eating it at all.

Get well soon Michael - and may the PMR remain at bay too!

[Hidden]

Hi Michael,

So sorry to hear about your continued ill health but pleased to hear that your treatment was so much better this time.

It's just a quick thought but have you ever been tested for antiphospholipid syndrome ( also known as APS, Hughes Syndrome or Sticky blood )?

It responds well to warfarin and can cause joint pain, headache etc. I think Mick T has it all along with PMR/ GCA and a whole host of other auto immune diseases. The reason I am wondering is that I would have thought the stress of everything would have sent your PMR into overdrive, not the opposite.

Enjoy being pampered by your lovely wife and hopefully things will settle down on the health front for you.

Best wishes

Keyes

[Classicmichael in reply to Hidden]

Hi Keyes, forgive me if I have duplicated this reply but not sure the last one reached you.

If things don't improve I will certainly look at APS but I think that this is probably down to lying in a bed for a week without the hospital giving me any clot preventing meds Probably did'nt help.

I will pass on your best wishes to my lovely wife and hope that things are not too worrying for you at the moment.

Mike

[Classicmichael]

Oh thank you PMRpro that's such a comfort and all that knowledge too.

This is all very new too me and you are the first to explain the whole process of what happens when you take Warferin and what it does to the blood.

I will have to take warfarin for at least six months but have been warned it may be longer.

Before I started this medication I had to sit on the top step gasping for air when l went upstairs, but now I can get as far as the bedroom to sit on the end of the bed breathless as apposed to gasping which is a big improvement.

Sounds like your husband, yourself and myself are all members of the same club, I am sure the Warferin will give us many more years to enjoy.

Thank you once again for sharing your invaluable wisdom.

Mike

[Celtic PMRGCAuk volunteer]

Mike, thank goodness you weren't admitted to the previous hospital again after their catalogue of errors. They really should not be allowed to get away with that but I can so understand you not wanting to face the stress of putting a case forward. Is there perhaps a close relative or friend who can act on your behalf if you supply them with all the details.

It sounds as though you have been taken good care of this time at the different hospital - it does restore your faith a little doesn't it. I'm sure you could have done without the extra setback but at least it must be comforting to know that it is something that can be treated. I hope every day is now a better day for you and your family.

[Classicmichael]

Thank you so much Celtic for your very supportive post, although I do feel rather angry about the whole experience I do feel that it would be difficult and stressful to take this on.

I have decided however to follow this up to ask the obvious question WHY am I still getting these episodes of bleeding (4times now) six years after having a straightforward operation on an enlarged prostate ?

I have no doubt that my new urologist will be in touch with the man who botched up this operation in the first place and I am hoping a more competent urologist will be able to put this right and sueing the incompetent one may not help as they sometimes join ranks when challenged and to be honest I don't feel strong enough to take on more stress.

I certainly hope that this can be fixed with corrective surgery and that I don't have to face this again.

I so appreciate the help that all of you have given me to get through this.

Mikej

[Judigardener]

Hello

If you want to make a complaint about NHS treatment in a hospital you can do it through PALS ( patient liaison service ).

Even if you don't want to sue it's a good idea to make the hospital aware of what's happened so it doesn't happen again to someone else. ( otherwise things will never improve. ).

Each hospital has a PALS.

Hope you continue to feel better and that you can sit in the sun and enjoy the spring.

[Classicmichael]

Thanks Judigardener, I will be getting in touch with PALS in order to get a report on what they found with recent surgery if only to find out why I am still bleeding.

Thank you very much for your kind comments