I’m not a freak of nature!

There was a time, when I worked for Royal Mail, when getting up at 03:45 for a 04:30 start was the norm and there wasn’t a morning where I didn’t want to get up and go to work. That changed when I had to stop doing deliveries and started working in the office, then I didn’t want to get up and go to work every day. 05:15 is alien to me now and getting up at that time yesterday morning, to go to the Nuffield Orthopaedic Centre, Oxford was a shock to the system. I’m such a lightweight!

I’d been dreading the day, the travelling, not sure what they would say or could do, hanging around waiting for the two different appointments (one at 09:20 and the other at 11:55), being prodded and poked, etc. etc.

We got there at 08:45 and by the time we had grabbed a coffee and booked in we didn’t have too long to wait. When we booked in the lady said that the Orthopaedic and Infection Consultants would probably see me at the same time. This would have meant that I wouldn’t have to wait till 11:55 for the second appointment, sounded good to us. Before I saw anyone I was asked to go to Radiology for an X-ray, they were brilliant in there, very quick and efficient.

When I first went in I was greeted by the Orthopaedic Specialists. I’d printed out all my surgery dates, medication, one set of blood tests and the last couple of discharge letters, which I gave to them. They were well impressed with that as it saved them a lot of questions and time. I always print off the surgery dates and medication sheets to give to anyone new I see at a Hospital now. They asked a couple of questions about the left leg and amputation then focused on the right knee. They touched it and found a localised hot spot, which is around the location area of where the abscess was. They asked me to bend and straighten the leg and tell them if and where any pain was being felt.

From an Orthopaedic point of view they said exactly what I expected them to say. The replacement parts look fine and at this time there is little they would want to do. I did mention what the Liver Consultant had said about there being no way the knee infection would have affected the liver. The Specialist agreed with that yet Hinchingbrooke thought it was a possibility. They work as part of a three Discipline group, which consists of them, the Infection Team and the Plastics Team. They said that I didn’t need the Plastic Team but they would get someone from the Infection Team to come in and see me. This is where it all got interesting.

The Infection Specialist looked over the paperwork I had given them and asked me question like what had happened, when did it start, what happened in between Hospital visits, how long did I have antibiotics for etc. etc., he was very thorough. We spoke about the thrush and the timeline of that, then concentrated completely on the knee. I told him that originally I was going to be on the Tazocin (Intravenous Antibiotic started when they grew E. coli) for 7 days, then 10 days and eventually 2 weeks on the advice of Microbiology. He told me that 2 weeks is nowhere near long enough to completely clear an E. coli infection. I told him they grew nothing the first time I went in and I didn’t understand why. Basically it’s because we (the human race) don’t have the knowledge or capability of identifying all the infectious organisms out there. He also told me that with regards to an abscess, most Consultants like to just drain it off, rinse it a bit and sew it up (which is what they did), but this is generally not enough to completely sterilise it. There is a possibility that even with the long time frame this is still connected to the abscess I had in the New Year. I told them they grew E. coli the last time I was in there, I knew it was associated with the intestines and faeces but didn’t understand how it was in my knee. I told him that the Consultants at Hinchingbrooke had questioned me about how it got in there. Because it wasn’t textbook and they didn’t know what to do they were pushing it back at me. This Consultant was great, explained how E. coli can get in joints, how important it is to deal with it effectively and that although it’s not a typical problem I’m by no means alone.

There is no major plan just yet as they want to know what exactly what they are dealing with and how resilient it is. The first step is to go back in 7 – 10 days where I will go to Radiology. They will use equipment to pinpoint specific areas of the knee and take some biopsy’s. This will be similar to the aspiration they did at Hinchingbrooke, it will be done with a local anaesthetic and fluid, tissue and maybe bone will be taken. They want to leave it that long because I will have been off the antibiotics for a couple of weeks, they can see how much it flares in that time, if at all. From what he said about the two weeks of antibiotics not being enough for E. coli, I think he feels it’s all ready at work now. The biopsy of tissue will be taken because if they don’t manage to grow anything they can identify some infection types from the cellular level of the tissue, its fascinating stuff. I’m really not looking forward to going back for the biopsy’s as the aspiration at Hinchingbrooke was bad enough, but these guys may be better. At the end of the day it’s a means to an end, and as they say no pain no gain.

They haven’t said too much about what could be done until they know exactly what they’re dealing with. They did talk about a few of options, some good, others not so but I’m happy to take this steady if it means getting it right. They told me if at any time it escalates where I become unwell, or it becomes extremely painful, I have to go to Hinchingbrooke Hospital ASAP. I have to tell them to get in touch with Oxford as soon as they can and they will arrange to get me transferred to Oxford as an in patient there.

While I was in with the Consultants my Dad had struck up a conversation with a couple from St Neots (about 26 miles from where I live). They had come on Patient Transport, which I think I will apply for next time I go (as Dad is suffering from a trapped Nerve, which is pretty painful). The guy has been in Hinchingbrooke a total of 53 days already this year with………,  yes you guessed it a knee infection they cant sort out. I know this will sound bad but seeing that gentleman made me feel better, it means I truly am not alone

I have to say that the Specialists were brilliant, I can’t explain it but they were just the best Specialists I think I’ve ever met. Totally professional but down to earth, they explained everything so well, worked brilliantly as a team and they just make you feel so at ease and confident in them.

On the negative side of this you have to wonder why I have to go all the way to Oxford to get this sort of treatment, why cant Hinchingbrooke deal with my situation? They were supposed to have phoned Oxford for advice, it’s obvious they can’t have done or they would have known how long I should have been on the antibiotics for! How comes the Microbiologists/Infection Team don’t know how to treat E. coli? You loose confidence in both Orthopaedics and Microbiology at Hinchingbrooke, then you question the other Consultants in different specialities and different Hospitals, is it the same everywhere?

On the positive side even though I’ve only met them once, they have mad me feel so much better. Not just about my situation with the knee infection but better about myself. The Consultants at Hinchingbrooke made me feel angry, upset and generally rubbish. Because my case is not textbook, they don’t know why it’s happening or how to deal with it. I’m made to feel like a freak of nature, a self-harmer, suffering from depression and the cause of the problem. Today I feel like a person who may have had a lowered immune system, have an infection that could still be connected to the abscess and it hasn’t been dealt with sufficiently. Having E. coli in my knee is not common but it can get there by various means and there is not an issue with my mental state or me. Even just having that as an outcome of the day made the whole trip worthwhile. I’m so looking forward to seeing both the Consultant and Psychiatrist at Hinchingbrooke again, I’m armed with ammunition and it could be fun.

 

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