Steve's hospital thread

[StevePSB]

Zyvox (Linezolid) until tomorrow, then nothing. My inflammatory marker was 31 if I remember from the results sheet I had to take with me yesterday. I gather normal range is 0 to 10. I'm very worried the infection will come back quickly once the antibiotics finish. I've been on them for 4 weeks (IV Vancomycin for three weeks prior to that) and can't have them for any longer as Linezolid can do real damage if it's used for longer then 4 weeks. It's already messed with my blood cells and made me anaemic.

I had a revision of one half of the prosthesis last year when they found out I'd broken it. That and this year's complete prosthesis revision means I've already had two, and part of the reason I got a new prosthesis made was that the bone loss from the revisions meant the old one wouldn't be long enough any more and I'd end up with one leg shorter than the other if they put it back in. I can only think that's the main reason for them not giving the further revision idea much time when it was brought up a few weeks back. Also, the more they operate the more they are damaging nerves etc. Also, there's the fact that if they did do another revision I'd still have the possibility of this happening again at some point in the future. With amputation, that risk is removed.

I can appreciate these points, but I don't want to be pushed into an (above knee) amputation that I really, really don't want unless there is so little chance of another revision working that it isn't worth the time and effort. It's a lot easier for other people to tell you it is for the best - it's not them facing up to it.

Thanks for the PM BecciJ.


StevePSB

[Pani]

I'm sorry to read all your trouble and worries, I hope everything will
be much better for you soon!

[df118junkie]

Zyvox (Linezolid) until tomorrow, then nothing. My inflammatory marker was 31 if I remember from the results sheet I had to take with me yesterday. I gather normal range is 0 to 10. I'm very worried the infection will come back quickly once the antibiotics finish. I've been on them for 4 weeks (IV Vancomycin for three weeks prior to that) and can't have them for any longer as Linezolid can do real damage if it's used for longer than 4 weeks. It's already messed with my blood cells and made me anaemic.

I had a revision of one half of the prosthesis last year when they found out I'd broken it. That and this year's complete prosthesis revision means I've already had two, and part of the reason I got a new prosthesis made was that the bone loss from the revisions meant the old one wouldn't be long enough any more and I'd end up with one leg shorter than the other if they put it back in. I can only think that's the main reason for them not giving the further revision idea much time when it was brought up a few weeks back. Also, the more they operate the more they are damaging nerves etc. Also, there's the fact that if they did do another revision I'd still have the possibility of this happening again at some point in the future. With amputation, that risk is removed.

I can appreciate these points, but I don't want to be pushed into an (above knee) amputation that I really, really don't want unless there is so little chance of another revision working that it isn't worth the time and effort. It's a lot easier for other people to tell you it is for the best - it's not them facing up to it.

Thanks for the PM BecciJ.


StevePSB

This would suggest that you have MRSA or VRE. I am thinking that your original antibiotic cement spacer had Gentamycin in it. I would be lying if I said this was good news. Have they tried Avelox® (moxifloxacin hydrochloride) ? Are you on steroids ? (I hope not)

[StevePSB]

I think the infection is some kind of staph - it's definitely not MRSA. As far as I am aware normally it'd be no real trouble to shift, but like I say, once it is around metal it tends to stick to it making it very difficult to get rid of.

I am not on steroids. The current infection was most reactive to Vancomycin which they put me on IV for three weeks as mentioned above. After two wash outs and three weeks on Vanc my wound had dried, inflammation markers had come down enough to be sent home on Linezolid. At the moment there is nothing further planned, we just have to sit and wait and see what happens. Like I previously mentioned there was some talk of long term antibiotics if it kicks off again, or if the planned aspiration in three weeks shows problems, to see if it might disappear slowly. What antibiotic that might be I have no idea, but we have yet to get that far and unless they were a little less harsh on the system I don't think I'd want to take them long term anyway. In the last 9 months I must have spent 7 months of them on some antibiotic or another and I am fed up of feeling ill all the time.

Two tablets left then we see what happens. It's an awful situation to be in and I wouldn't wish it on my worst enemy. The constant worry and uncertainty is definitely wearing me down.


StevePSB

[df118junkie]

MRSA (Methicillin Resistant Staphylococcus Aureus). The antibiotic Linezolid is for infections that are resistant to normal antibiotics. The results from the Vanco sound encouraging. The problem is that the antibiotics are carried around the bloodstream to tissue. As your prostheses are separated from tissue by the cement, it is hard to deliver the dosage to the affected area (hence 'stuck' to the metal).

Coagulase Negative Staphylococcus - Patients at risk include those with prosthetic devices, intravascular catheters or other foreign bodies in place, and immunocompromised hosts. These infections are inherently difficult to treat given the frequent presence of foreign material and the often multiple drug resistant nature of the organisms. More than 80 percent of coagulase-negative staphylococcal isolates are resistant to methicillin and semisynthetic penicillins.

I still think it's worth you asking about my previous suggestion, and the group of drugs it comes from, like Levoquin.

[BecciJ]

Thanks for the PM BecciJ.


StevePSB

No probs. Just let me know if you want the details... Oh, and my friend is a clin neg solicitor, so if that is a factor, she can help with some guidance if needed.

[StevePSB]

Even though these infections were both probably picked up in theatre (the first infection was probably from my surgery last summer, the second probably from my new prosthesis going in) there's no proving that, so there's no likelihood of any legal recourse. Even if I could prove it, I don't think I would take legal action as I don't like to think I would profit from the NHS and infections are to some degree a risk that you have to take when you have surgery in hospital. Unfortunately, they are a fact of life and no amount of 'deep cleaning' will ever totally eradicate them. Thanks for the thought though!


StevePSB

[BecciJ]

I can understand your point on this, yeah. Something to think about if things do get worse though perhaps...
The case I was mentioning before was a clear case of clin neg- very bad stuff and a lot of poor care going on so hence he sued.

[StevePSB]

I had some shocking treatment last summer - being sent down to theatre and given a general anaesthetic for an operation that they hadn't actually got the prosthesis parts to do, and being woken up to be told they couldn't do the operation until the required parts arrived by courier the next day - amongst other problems, but even so, it didn't kill me so I let it go.


StevePSB

[bobblekat]

All I want to say Steve - GET WELL and hang in there!!!

[BecciJ]

I had some shocking treatment last summer - being sent down to theatre and given a general anaesthetic for an operation that they hadn't actually got the prosthesis parts to do, and being woken up to be told they couldn't do the operation until the required parts arrived by courier the next day - amongst other problems, but even so, it didn't kill me so I let it go.


StevePSB

Well, yes, you survived it, but if things are bad due to medical negligence, you deserve compensation. Seriously.

[Deschanel]

Incredibly sorry to hear your serious issues are ongoing, Steve. And your unhappiness with the NHS is understandable.

In the US, you'd be fighting your insurance company day and night as they seek to deny you coverage. If you were uninsured, forget it. You'd be a poverty case, and they would stick you with a $200,000 bill and ruin your life and credit rating forever. For something you have no control over.

As the battle for health care reform rages on here- where the opponents of the most minimal safety net seem to be winning with extravagant lies and paranoia about "socialism"- at least you won't be bankrupted and saddled with crushing debt as the result of your medical problem.

No such safety net exists here, and Obama's intitial plan for making health care accessible to people who need it is slowly being destroyed, shamefully. The British NHS may have f*** up for you, but if you were in the US, it would be twenty times worse- you'd spend a lifetime paying that bill. I'm sorry to be speaking aout this in a thread about your very real medical problem, but it's at a fever pitch in the US, how 47 million uninsured are basically told to f*** off and die. And Obama seems to be caving, dismally, to the demands of right-wingers. Some "land of the free"- no, we're not free, at all, we're at the mercy of corporate interestts who see our lives and health as a profit center.

So I'm wishing you well, my very best. The NHS might be less than ideal, but if you were in the US without insurance, you'd be well and truly f***. Even with insurance, you'd be fighting the insurance company and still facing staggering debt. I'm seriously polishing my Irish passport. Because if any sane health care reform cannot pass in the US, this country is f*** and over, and corporate greed wins, as always.

Steve, I'm sending you some sincere affection and want the very best outcome for you. Keep us posted, please. Didn't mean to make your issue a political thing, but I can't not. It is crazyland here right now about making health care accessible. Rabid crowds with pitchforks- against it.
Insane.

[StevePSB]

That's the main part of the reason I wouldn't take action against the NHS, unless there were absolutely dire results of poor treatment that were nailed on provable. Last summer numerous people told me I should have sued for being given a potentially dangerous general anaesthetic when they weren't ready to do the operation. I don't doubt I could have, but it's just not right.

I got MRSA in 1996 at the time when I was having chemo. Didn't Leslie Ash sue the NHS when she got it? I didn't give it a single thought.

I am very thankful for the treatment I have received over the years. I dread to think how much it must have cost, but it must be many hundreds of thousands of pounds by now. It is a relief that we have a system over here that looks after people regardless of their wealth. I would be in major trouble in the US and would no doubt still be trying to pay off treatment from 13 years ago if I didn't have medical insurance, let alone pay off what I've had to have in the last 9 months. The antibiotics I've just finished were very, very expensive. I've looked on the internet and it seems they've likely cost the NHS something in the region of £25 a tablet. I've had 56 of them, so there's a rough guess of £1000 to £1500 on their own!

I have now finished my antibiotics, and I am currently sitting here awaiting my fate. It isn't very nice at all. I know how quickly these infections have laid me low - literally in the space of 3 or 4 hours. I'm dreading it happening again and I could be back in hospital in a hurry again at any time. It's the uncertainty of the outcome, coupled with the fact I know what could (and I dare say will) happen that's the worst part of all this. It basically feels like a game of 'wait and see, but probably get ill' at the moment and it isn't nice. The annoying and ironic part of it is that my leg has healed well and my knee bends almost fully - certainly more than good enough to drive again if I could afford it. It's going to be a crying shame if the infection puts paid to all that.


StevePSB

[glennjridge]

seeing as your knee has physically healed well....is there a period when your considered in the clear infection wise?

like maybe infections generally happen fairly soon after the procedure because someone was inside there messing about putting something foreign in there so maybe after a month and there hasnt been a infection like last time .....your then in the clear, or is that sword always hanging over your head no matter how long has passed?

[StevePSB]

The infection from December almost certainly came from the operations I had last summer to replace half of the prosthesis, which had broken - if you can remember that far back! That means the infection was 'put in' in late summer and took until the middle of December to show itself, so unfortunately, even if this new infection should disappear then it could always come back at a later point, and the more operations I have the more chance there is of an infection getting into me. That's the one down side I'd have to constantly have to live in fear of if this does clear up. Also, I was always told that the prosthesis itself can actually attract infection from elsewhere in the body, so I have always had to be mindful of cuts, chest infections, that type of thing.

So far, given I've been off antibiotics now since Thursday, I am doing OK. Nothing seems to be going wrong, my leg seems as I'd expect it to be if things were going right, but I am all too aware of how quickly that can change (literally within hours), so I am not getting too carried away.


StevePSB