Knee Infection* My dilemma.

[EalingGran]

That’s very comforting, thank you. If afraid there is no update, I’ve not been informed if I have a consultant or if they have even received my referral. I’ve been informed it’s been passed on. It’s most alarming as I’ve been doing some research about the infection

This doesn't sound acceptable to me.
Have you tried contacting the PALS ( patient liaison service) for the hospital?
Every hospital in the UK has one and their phone number should be easy to find ( either on hospital website or by switchboard). They are usually very helpful and very good at negotiating their way around hospital bureaucracy.
I would be threatening to escalate to a formal complaint if it didn't get sorted promptly if it were my knee.

 

[Chrissyann]

Ive been in touch with Pals quite a few times now. They have informed the orthopaedic department and I’m waiting for a reply. the last message from pals was yesterday saying if you don’t hear anything before the 23rd then get in touch. Apparently i have an infectious that’s rarely found in the knee as it usually effects the heart. I wonder if it can spread to other parts? Perhaps the team are not interested, they don’t seem in a hurry.
Thank you so much for replying, it was very caring. All the best.
Should I escalate it.?

 

[EalingGran]

I would in your place. I don't think it sounds acceptable to me. Do you have an infectious disease specialist involved?
I think from what I have read on BoneSmart that you should have. If so- can they push for the orthopaedic team to speed up?
I would be making a formal complaint. Sometimes we are just too easy-going and put up with too much. Is your GP any help? What do they think?
Infections need to be dealt with not left.
I had septicaemia about 5 months after my PKR. It was unrelated to my knee ( after a routine biopsy elsewhere).I was very lucky because it was treated quickly and didn't spread to my knee. I was treated by an ID (Infections) consultant.
I wish you all the best and hope you can get things moving.

 

[Chrissyann]

I can’t help but worry about the time the time taken to diagnose an infection. January 1st 2023 I noticed my knee was swollen, it was hot and painful. My blood work showed an increase in white blood cells. An X-ray and more blood works in July. I waited patiently until December when I had a arthroscopic operation that showed I have an infection. Since then i was passed on to an infection team. That’s it, nothing! Is this normal? I’m in pain, I have been for nearly 14 months. I’m tired because of the fatigue it causes and I’ve had enough.
Im sorry today has been hard.

 

[mendogal]

This isn't normal when any infection has been diagnosed and certainly not one in a joint replacement.
I am in the USA so am not familiar with the UK health system but there are probably multiple places, clinical and administrative, our UK moderators can recommend for hollering your head off, I mean "escalating this."

 

[Jamie]

You are right to be concerned about this situation. Infections do not go away on their own. Please get your GP involved as soon as possible. File a formal complaint anywhere you can. It's time to really rattle cages. I don't want to alarm you, but it is possible for an infection in one part of the body to be transmitted elsewhere. Should it find its way to your bloodstream, the situation could worsen very quickly. Please to not take waiting as an answer. If you don't get an answer from whomever you are dealing with, ask them who you can escalate the problem to and then do it. I'll tag my co-administrator, @Jaycey, and she may be able to help you. Unfortunately she is gone from the forum for a short while, but she'll see the tag once she returns.

Allowing a known infection in your joint to go this long to me is a very serious breach of acceptable medical care. You have every right to complain loudly. Please keep in touch so we know how things are going.

 

[EalingGran]

Hospitals have to respond within a certain period to a formal complaint. It should definitely speed things up.
I know it is hard to do this- particularly when you are tired from an infection and in pain. But unfortunately these days it is only the creaking door that gets the oil.
Is there anyone in your friends or family who can help you with pushing things?
I would be considering emailing my local councillors or MP as well.
Being left this long with an untreated infection cannot be right.

 

[Jaycey]

I do have an infection and have been referred to a specialist. So it looks like I’ll be having a two stage surgery at some stage.

Who advised you regarding the infection. I would be calling their office daily until you get some answers.

Should I escalate it.?

The NHS is in a critical state. Unfortunately you can no longer just sit and wait. In your case you need this addressed as soon as possible. Call the consultant who diagnosed the infection and let them know you still need to be treated.

Another option is to call or email the CEO of the hospital where the consultant has their practice. Tell them your critical situation and ask for their advice on moving things forward.

Bottom line - you need to start advocating for your treatment. This isn't moaning. This is highlighting a critical issue that needs resolution.

 

[EalingGran]

Another option is to call or email the CEO of the hospital where the consultant has their practice.

Agree fully with this. You need action ASAP.

 

[Chrissyann]

Thank you so much, it’s appreciated. I called my GP I’m waiting, it’s the story of my life. I’ve written to pals again with threats of escalating it further, we shall see what happens! I was told by my surgeon before he passed me over to the infection team that it’s non urgent, excuses about the surgeons and infection specialists having to organise a meeting to discuss my problem. This was the beginning of January and I even had to get pals to get the surgeon to call me about the results.
Thank you, all of you it’s boosted me up no end. I was beginning to feel apologetic about bothering them, it’s somehow my fault I have this infection and Im becoming a nuisance. Yes, I’m going to fight to get this sorted. You’ve all been wonderful and I’m lucky to have you on my side.
best wishes.

 

[Jaycey]

I was beginning to feel apologetic about bothering them

No - you are not bothering them. You are highlighting a very urgent need. Wait lists are long. But for an infection there should be no wait. Get on the phone and don't stop calling until you have an appointment in your diary.

 

[Chrissyann]

Just a quick update. My GP say hes sorry but there’s nothing on your files, you have to get medication from the hospital. He wasn’t interested.
I’ve been told that antibiotics don’t work on tkr infections. The implant has a bio film that’s impossible to medicate. He did not answer my question, he didn’t know anything about it, he certainly didn’t want to find out. Here we go again!

 

[Jockette]

We have lots of members who have successfully recovered from an infection, so yes, they can be treated. How dare they tell you it can’t be. I’m so sorry you‘re going through this delay.

Here are some other members who have had infections:

Knee Surgery Recovery Area

For post-operative knee patients, on the "other side"

bonesmart.org

 

[sistersinhim]

I pray you can be seen quickly. Enough is enough!

 

[Jamie]

What you were told about treating infections is absolutely not true. There are a wide variety of antibiotics that are used successfully to treat joint implant infections.

It is true that bacteria can be present within a biofilm protection on the joint itself when it is placed. It is not treatable in this protected form and just lies dormant until something triggers it (it is not understood yet just what triggers the bacteria to activate and grow). Once that happens, doctors identify the type of bacteria they are dealing with and provide the appropriate antibiotic. This is one reason it’s so important to have both an orthopedic surgeon and an infectious disease doctor on the case together.

This particular bacteria is very unusual in joint replacements, but I did see a recent paper (2023) that suggests it may be more prevalent than realized. It appears to be very responsive to treatment with penicillin and other medications. But, as I mentioned in a previous post, the danger lies in NOT dealing with it immediately as it can travel to other areas of the body and would be a very serious matter if it found its way into your bloodstream.

I know it sounds radical, but the suggestion to physically go to the hospital and insist on being seen is a good one, if you have a way to do that. I would do something like this along with the other suggestions to make complaints. Fire all of your guns at once! (American saying, but I hope it translates well over the pond)

You may want to do some research and find another GP.….one that will help you when you have problems like this. You have the right to choose your GP and don’t have to stick with an unresponsive one.

I did see in some of the research material that there may be a connection to dental problems with this type of infection. If you have not seen a dentist recently, I suggest that you make an appointment to be checked out to ensure you don’t have an undetected oral infection. Be sure and tell your dentist about this diagnosis in your joint. It might be possible that the dentist could help with the medication needed to fight this bacteria….ask about that as well.

You matter. And your health and wellbeing matter. Your healthcare system is going through many challenges right now. But I can assure you that if you are insistent and vocal in as many ways as you can be, you have a much better chance of getting the treatment you need. Hang in there! You definitely have the love and support of your BoneSmart family.

 

[Chrissyann]

I think with your support I must have hit a nerve or I fired all my guns at once, as I have an appointment with my original consultant, he did both knees and the arthroscopic operation. It’s next Wednesday 21st at the clinic, not a phone app like I usually have. I’m nervous, I suffer from anxiety, when it comes to standing up for myself I get flustered, I’ve been told so many things that have later been denied, I thought I was making it up. I’m taking my husband who has been instrumental in writing to pals. I think he’s driven them up the wall. Thank you for pointing out about antibotics treatments, I was told by this surgeon that he couldn’t give me an antibiotic, that it would do more harm than good. I’m sure if I’d been prescribed medication at the beginning it would have been an acute problem rather than chronic. Also I checked with my dentist and had some X-rays to confirm that I haven’t any infections in that area.
I will keep in touch and hopefully with some good news.
thank you for your support. It worked!

 

[Jaycey]

@Chrissyann Result! So glad you have an appointment with the surgeon. Be sure and highlight the infection that needs to be treated urgently. This can indeed be treated with antibiotics. But you need the surgeon to initiate this and get the infection control team involved.

Please keep us updated!

 

[celynda]

@Chrissyann, glad to hear you have an appointment next week! If possible, take someone with you to the appointment so they can take notes and help you stay focused. I also recommend writing down ALL of your questions so you make sure to cover everything.

Also, please continue following the advice from Jaycey and others. Good Luck!

 

[sistersinhim]

Thank God you have an appointment this coming week! Stand up for yourself and if you can't, let your husband do it. Your health comes first!

 

[Layla]

Aww, Chrissyann, this is simply heartbreaking. I am so sorry you've been neglected as you have. Thankfully you have a supportive partner in your husband. Fight for your right for proper medical attention, care, resolution and a future free from infection. Be bold. You can do this and we're here for support if you ever feel the need.
We do care.
Hugs and Best Wishes...please keep us posted.
@Chrissyann