Knee Infection* Infection after 5 weeks

[Susie-Q]

As I'm sure others will confirm, a hip replacement is not the same as a knee replacement so you shouldn't compare your recovery from that to this. Congratulations on all your walking! I'm about a week ahead of you and I really need to get out and walk more but our weather has turned sour and we're having lots of rain. I am doing the odd load of dishes and laundry so am getting some exercise that way, and PT exercises. Glad you didn't hurt yourself in the shower! Please be careful!

 

[doopy]

Jumping in here re infection - sorry, not sure where i should be posting! And apologies for length of post! Starsfan22, seems like you've been gong through similar?

When I last posted, all was going well with TKR after about 5 weeks - zero pain, great mobility. Then disaster struck - got up one Sat to see leg was a bit red. Panicked and went to A&E (great idea on a Sat night! plus a 4 hour wait!). Was seen, diagnosed with cellulitis, given Flucoxacillin.

A few days later I made an urgent appt with my surgeon, who was visibly shocked. He changed the antibiotics, ordered blood tests, wanted to track my CRP levels (which were around 45).

A week later, back in A&E on a Sat night, leg much redder and angrier, CRP 77. Seen by orthopaedic consultant, put immediately on IV antibiotics. 30 mins after the IV finished, leg started prickling and then literally exploded (don't ask!). Was then admitted.

4 days later (delayed due to other more urgent cases, NHS crisis and Covid etc), surgeon carried out 3.5 hr wash-out of joint, full debridement, synovectomy, & replaced the moveable bits in the new joint, and stitched me up with 44 staples.

Was kept in for 14 days, waited for 5 x cultures to be grown, all of which proved to be a Proteus bug, and then put on IV Cipro. Once my CRP had fallen to under 100 (it had risen to 173), and the wound was looking under control, I was allowed home.

However, nearly 3 weeks after the debridement op, the small ulcerated area on the lower shin won't heal - both surgeons had a devil of a job to close the wound. I've had a lot of dressing changes and am now fitted with a negative pressure wound pump 24/7.

There were mutterings last week at clinic about taking the joint out and replacing, maybe needing a muscle and skin transplant, and having to find a specialist team of combined plastic and ortho surgeons.

Without being over-dramatic, I feel like I've got PTSD - I'm just crying all the time, feeling hopeless. The care I'm receiving - courtesy of the NHS - is truly amazing - nurses, the Tissue Viability Team and the doctors are all fantastic, though being an in-patient was a bit challenging (was on a ward with a few dementia patients, so no rest at all). Strangely, throughout all of this there has been no pain (a bit of sore skin, like a graze), but all I take is the odd Paracetamol, but emotionally I'm wrecked.

This does come after the past 2 years during which I had a hysterectomy, major heart surgery, breast cancer diagnosis and treatment, and finally shingles, so I guess that cumulatively I've picked up a lot of stress.

Any words of advice or encouragement would be most welcome!

 

[Jockette]

@doopy Oh my, I’m so sorry to read all this.

I am so glad you have such a good medical team working with you, that is so important.

With all the medical stress you‘ve had the last couple of years I’m not surprised there is some PTSD. We are here for you.

Please keep posting during this very stressful time.

Hang out here with us, Bonesmart has a wealth of advice, information and support.
We will offer helpful suggestions,

Cheer your accomplishments

And send hugs when you are feeling down.

I copied your above post from @Starsfan22 ’s thread, so you’ll have a record of this in your thread. This benefits you because all your information is in one place, easy to find, and maintains a nice journal for you.

This also benefits our staff, as your information is all in one place, and we often go back through your thread for previous details, so we know what you‘ve been through which helps us advise you better.

 

[Scaredycat10]

Doopy, right now, I feel almost ashamed at the euphoria I felt this afternoon after reading your latest contribution. I can't begin to imagine how you've coped.
Words are very easy to write from a distance and I can't give anything other than support but believe me, I am in awe of your experiences and am truly rooting for you.

 

[Rain Dancer]

So sorry that your are in this horrible situation. Sending you healing thoughts from across the pond. Glad that you are getting good care.

 

[jaspa]

Healing prayers and thoughts

 

[Beesknees70]

@doopy I think you are entitled to have ptsd w all of this. I send you strength and healing thoughts. I am sorry this has taken a bad turn and hope it clears quickly. You are strong to have gotten through this so far! Really think you are due for some better luck

 

[djklaugh]

@doopy Yes PTSD related to medical traumas is a real thing! You have been through so much and are still experiencing medical issues. It's great that you have such a good treatment team but perhaps, at this point, that is not enough. You might ask if the hospital has a counselor or social worker you could talk to ... some one who is very knowledgeable about these kinds of problems.

And always we here at BoneSmart are here for you!

 

[Susie-Q]

Please keep us posted on your recovery! Holy cow, what a couple of years you've had! Of course you have PTSD. It's time for some good things to happen now.

 

[hawk2go]

You should be good medically for the next decade after this infection is resolved. I wish you speedy healing and continued great care. Take care of your whole self.

 

[Cocopug]

Jumping in here re infection - sorry, not sure where i should be posting! And apologies for length of post! Starsfan22, seems like you've been gong through similar?

Any words of advice or encouragement would be most welcome!

This sounds like a complete nightmare. I am so sorry you are going through this. Keep going!!

 

[Catalien45]

I just finished reading all of your posts..... I am So sorry for all that you have been/ are going through! I’ll be watching for your progress. It sounds like you have a good team. Many prayers from over here, that you will soon see good progress. I’ll be watching for your posts, and keeping you in my thoughts..

 

[doopy]

Hi all,
First, thanks so much to everyone who posted sympathetic and encouraging comments re my last post - I'm sorry I didn't reply, but I've been in a dark place (as they say), for some time.
Thought I'd give an update on my progress, in case it can ever help anyone else.
Things are only just beginning to (hopefully) turn a corner, more than 2 months post-debridement (DAIR) surgery on Oct 20th. To recap, I had a Mirabilis bacterial infection 5 weeks post-knee replacement, which finally erupted (literally!) 8 days after noticing the skin on my leg / shin was a bit red. 2 weeks in hospital, 3.5 hour op to wash out, clean etc.
I'm still in a terrible state, possibly due to the meds - I just don't know. The leg / knee has NEVER caused any real pain, either after the original op, or during the infection period, but i'm on 750mg 2 x per day of Ciprofloxacin for 3 months which is known to cause tendinopathy, and my shoulders and arms are in pure agony, possibly the worst pains I've ever had. You really aren't meant to take NSAIDs with Cipro, so they're out of the question, so I'm relying on good old Paracetamol. I am also absolutely exhausted all the time, but can't sleep because of the pain, and also I think the meds disrupt sleep.
On top of this, the wound on my shin is taking for ever to heal (I think it's where the leg erupted), and I've been attached to a large, heavy and noisy wound vacuum 24/7. This means no showering - vile (though I'm allowed to shower just prior to my weekly hospital appt when the wound vac seal is changed by the Tissue Viability Team). My surgeon spoke about the need for plastic surgeons to become involved if it doesn't improve. I think there is a 3cm tracking in the wound which is cause for concern.
When giving me an idea of how things might progress, I've seen 2 surgeons, one of whom told me that if a 2 stage revision were to fail, "things might get very scary - don't go there". So I have 2 issues - trying to ensure the infection goes and the knee joint is intact and sound, and healing the hole lower down. Apart from the tissue appointment, I also have weekly blood tests to monitor my blood count and my CRP and ESR levels.
At last, my CRP has fallen to within one point of "normal", with my blood counts all normal, and the wound is finally showing signs of healing, and from the inside outward, which is critical. I can see looks of relief on the faces of the wonderful team who look after me, but there's still a long way to go. I will finish the Cipro around 15th Jan, and I'm praying it hasn't done permanent damage (which it can - I also have hEDS - hypermobility - which makes it more hazardous), and that I recover some energy. At present, I can potter off to the kitchen to empty the dishwasher then have to retreat to the recliner.
Finally, the exhaustion has me in tears constantly - still. The constant fear, worry and just inability to do anything. One of the nurses reminded me that I had had 2 big operations within 5 weeks, and the healing required is massive - is it? Do you think it is doubled?
I have (rather neurotically!) read loads of academic papers online on the subject, and I do note that these often start off by stating how traumatic infection is for both the patient - and the surgeon, so it is I guess it's not surprising I'm in such a state. I"m banking on everything improving when I come off Cipro, though I'm scared the infection will return then. So many questions!!!
Sorry if I have been terribly negative, or scared anyone - the upside is that my knee, even having been through it all, doesn't hurt at all!!

 

[Starsfan22]

First, take a deep breath, slowly release it. Do this anytime you're feeling overwhelmed or weepy. It helped me and I think it can help you too.

The only criteria I have for giving you advice is that I've just been through what you're going through. Only difference is I had my replacement hardware removed, a spacer installed and had 6 weeks of IV antiobiotics, one week off antiobiotics and waited a week for assurance infection cultures didn't grow. At that point I had a knee replacement, that was 4 weeks ago yesterday! I to was on cipro along with vancomycin which I had a nasty reaction to. So off IV for my last week of 6 and onto oral antibiotics for the last week. My home health nurse to me repeatedly how hard the IV antiobiotics were on your body, plus you are recovering from a major surgery, actually two. As soon as I was off IV antiobiotics I felt so much better. I don't know if it was the antiobiotics or time to heal or optimism that I could have the replacement and beging the actual healing process. That's something to look forward to right? You'll know what to expect with that process because you've been through it. I just received my blood test that shows no infection present! I'm hoping you'll be right where I am in a few weeks. I caution you to take it easy, try not to overdo when your feeling so much better. Take it real easy with PT.....no setbacks allowed!

It's always darkest before the dawn right? You'll get there, I feel confident you will. It sounds like you have a good team and the incision issue is finally on the mend. My incision was slower to heal with the replacement, probably because the same site was cut into twice in a few weeks? You too, I'm guessing.

Hang in there, I'll pray for your recovery. Keep posting here, vent when you need too, we'll support you I promise.

 

[Catalien45]

Hi, Doopy. I just read your latest post as we got in from my Physical Therapy. You have Really been through so much! The basic rehab from a TKR is a challenge in itself, but then, a complication ( infection) poses it’s own set of problems. Like you, I didn’t really have a lot of pain initially, & was doing great. Then this infection came. My hospitalization was just 1 day shy of a week, & my surgeon did a cleanout surgery & replaced the liner in my knee. I found that this second surgery hit me much harder! When I mentioned this to one of my nurses, she said, “ of course....you’ve just had this second surgery little more than a month after your first surgery, you have an infection, and your tissue is inflamed”. And my Infectious Diseases Dr said the same: “ of Course, you tire easily.” It seems the recovery has been a little harder this time, a little slower. My older sister told me her Dr. once said, “ just remember, if you get just a Little better each day, that is progress “ I try to remind myself of that daily, it helps. My fatigue is getting better, but my sense of balance is still off. I am 6 weeks out from my cleanout surgery. - had my PICC line removed yesterday! ( 6 weeks on IV antibiotics) , and now on 3-6 months of oral antibiotics. But progress! Like you, I did have a time when I was so sad, found myself crying over nothing, but it did pass. Maybe we just need that sometimes. I think maybe a combination of fatigue, medications, and, just the situation. And it’s understandable, especially in your case, you have been through a Lot , even before this. I’m keeping you in my prayers that you will see some improvement soon. Remember that saying I often see here...” baby steps.”. Do take care, and remember that there IS light at the end of the tunnel. And don’t be hard on yourself, I think this just takes time, sometimes more than we’d like.

 

[Scaredycat10]

@doopy
Words fail me...but I'll try!

I have no advice at all on the mechanics of your medical problems as my TKR has been straightforward apart from my popliteal issue which has little to do with my surgery.
But
I can identify with the exhaustion and subsequent tears.

I don't sleep more than a couple of hours a night [if I'm lucky] and combined with the added problem of always on edge looking out for my husband [disabled thro' MS and has just finished cancer treatment], I am just plain old tired out.
I have to say to folk sometimes 'don't be nice to me' as it can precipitate floods of totally unwanted tears so your tearful reactions are normal, therefore cross that one off any potential 'am I over reacting' list.

Our NHS is over burdened and comes in for a lot of stick but when it works, it truly is a thing of wonder and I am so pleased you're getting the care you need.

Chin up and get another box of tissues for when those taps behind your eyes leak. Kleenex has been a good friend of mine.

 

[Jaycey]

One of the nurses reminded me that I had had 2 big operations within 5 weeks, and the healing required is massive - is it? Do you think it is doubled?

Short answer - yes! You have been through so much and are still fighting off this infection. No wonder you are exhausted and teary!

And do remember that major surgery itself can bring on PTSD. Add into the mix your sudden infection and all that it brought - I think you are doing remarkably well!

Be good to yourself. You are being very brave through all this. And we are with you all the way. Please keep us updated!

 

[hawk2go]

I know when I get in a similar emotional state (and that has happened with my standard TKR recovery), I try to shift the focus. It may be hard because there are so many troublesome thought balloons swirling but can you think of something that brings you joy that you can do while sitting? It would have to be something that won't be difficult to pick up again if you need t take a break to rest. Strangely, I thought I'd be finishing all of my knitting projects but I have not picked up the sticks during this recovery. I've done puzzles and adult dot to dot and lots of game apps and way too much bad tv - all intended to pass time and take my mind off my recovery.

My hat tips to you @doopy. Rest when you can and come here to let us ease your burden, if only a bit. You've been through a lot and you are still swinging!

 

[doopy]

Oh thank you to all of you! You've all made me feel so much better!
One problem has been that my original surgeon was unable to be involved in any of this, as he operates in a hospital that doesn't deal with acute admissions (although he was on the case by phone the whole time, checking up on me & hurrying things along where necessary). The surgeon who took over has been absolutely fantastic, super-efficient & caring, and I have total faith in his ability, but.....I do feel that surgeons can sometimes not be totally aware of the emotional trauma involved, and can be a bit blunt when confronting the patient with information and prognoses. In short, coupled with these strange Covid times when its not possible to access a hand-holding GP, I've felt totally shocked by my condition at almost every appointment, until I began to turn a corner in the past 2 weeks and I felt the team begin to lighten up. I can only remember their serious faces, and what seemed to be blank looks when i sought any words of hope or encouragement - basically, I've been scared to death! I've tried to ask about the effects of the meds, but I get the impression that as they are so vital i just have to suck it up (totally understandable, but it would be good to be told that feeling **** is ok, and not to panic). So hearing from others here that they had reactions is sooo helpful. Also, the doctors' reactions made me feel this is such a serious and uncommon event, but to find others on here in the same boat is very reassuring - you're all a lot braver than me!
Everything you've all said is so valuable -and KIND!! It's what I've been missing (tho lovely concerned husband tries hard) - thank you.

 

[doopy]

First, take a deep breath, slowly release it. Do this anytime you're feeling overwhelmed or weepy. It helped me and I think it can help you too.

The only criteria I have for giving you advice is that I've just been through what you're going through. Only difference is I had my replacement hardware removed, a spacer installed and had 6 weeks of IV antiobiotics, one week off antiobiotics and waited a week for assurance infection cultures didn't grow. At that point I had a knee replacement, that was 4 weeks ago yesterday! I to was on cipro along with vancomycin which I had a nasty reaction to. So off IV for my last week of 6 and onto oral antibiotics for the last week. My home health nurse to me repeatedly how hard the IV antiobiotics were on your body, plus you are recovering from a major surgery, actually two. As soon as I was off IV antiobiotics I felt so much better. I don't know if it was the antiobiotics or time to heal or optimism that I could have the replacement and beging the actual healing process. That's something to look forward to right? You'll know what to expect with that process because you've been through it. I just received my blood test that shows no infection present! I'm hoping you'll be right where I am in a few weeks. I caution you to take it easy, try not to overdo when your feeling so much better. Take it real easy with PT.....no setbacks allowed!

It's always darkest before the dawn right? You'll get there, I feel confident you will. It sounds like you have a good team and the incision issue is finally on the mend. My incision was slower to heal with the replacement, probably because the same site was cut into twice in a few weeks? You too, I'm guessing.

Hang in there, I'll pray for your recovery. Keep posting here, vent when you need too, we'll support you I promise.

Thank you so much for such a caring, helpful response - so good to hear of your experience. I send you all my positive thoughts for a great recovery - great that you are infection-free now. I'll look forward to seeng if the end of meds makes a difference, like it has for you. And I'll really take your advice to heart.