post surgical complications and feelings (some may find images disturbing)

[pellicle]

This marks the point where the wound has now closed and ceased weeping. There was a few weeks where it was weeping slowly and required lancing and draining.

I remain on antibiotics, and will report when they cease. That will mark the next important stage: does it reccour.

I will update on next milestone.

 

[epstns]

All of my fingers are crossed. I truly hope that you have success this time around.

P.S. It is hard to get any work done with all my fingers crossed.

 

[mainframe]

Hi Pellicle,

Good luck with your situation.

 

[pellicle]

Hi

Well after being in Finland now for a few weeks I have come across the next milestone.

About 5 days ago I noted a slight redenning of the top of the scar tissue. This progressed into a kind of blood blister, which is the same site that the last swelling occurred at. I went to the local medical place and asked that they lance it, being devoid of surgical supplies here having just moved in.

The fluid drained looked (to the doctor and to me) like a mixture of predominately blood and some amounts of pus.

By 8 hours it had swollen again and I decided to invest in some surgical tool and pop it myself. The fluids were again blood with some pus. This cycle repeated every 8 hours till it finally broke the skin by itself and there is now (again) a small fistula at the top of the wound. I notified the surgeon (who remains interested) and the infection control specialist (yet to reply) and began my normal regime of cleaning and dressing the wound.

My surgeon asked for a swab to be culture, so I toddled off to the local hospital to enquire about such.

While, there they measured my CRP (with a natty little tool that took a blood sample not dissimilar to my coaguchek) which returned 11. Not a bad figure and representing the top end of "normal". They were of the opinion that it was now not possible to get a uncontaminated sample, and concurred with my view that the regime of antibiotics I am on would make a sample questionable anyway.

They kindly gave me some wound gel and sent me to continue in my way.

The wound is continuing to dribble blood / pus lightly (estimate about 2cc/day) but is otherwise not painful.

My working theory is that something has burst through a "compartment" in there and blood cells are now attacking bacteria. This is a "good thing" if I am right.

One small observable feature here is that previously (like till 5 days ago, right from the surgery in 2011) there has been a "stretching discomfort" when going from sitting to standing. This is now gone.

I do not know what factors have led to this, but my view is that things like:
* 3 legs of 8 hours of flights to get here
* moving some furniture
* extra cycling
* a shitload of chest movement when I visited my wife's grave (for the first time since this chapter started in Nov 2012)
has perhaps broken through something.

Actually the infection became "obvious" in the month following my wife's death, I have often wondered if that was coincidence or was related to 1) it being there smouldering all along 2) the extra chest movement during the weeks following her passing 3) the reduced immune ability n that same period.

Propionibacteria is renown in prosthetic surgery for "sleeping" for as much as 2 years.

The antibiotics reigme is to continue till around July 2014 so lets see where this goes
More when it comes at me.

 

[Agian]

Are you thinking along the lines of a burst abscess? Like maybe the pus was in there somewhere and has now burst through the surface?

 

[pellicle]

Don't know what to call it. I can't describe it better than I have. Did you look through the earlier history?

 

[Agian]

I did and I'll even admit that I shed a tear. I don't know whether you're thinking out loud, or whether you want other people's views on whether it's a coincidence. I don't know if I'm qualified to give an opinion. Is it possible that this infection had something to do with your loss?

 

[pellicle]

Hi

. Is it possible that this infection had something to do with your loss?

No, only perhaps when it demonstrated.

I don't know whether you're thinking out loud, or whether you want other people's views on whether it's a coincidence.

Thinking out loud, trying to join the dots. I'm a research oriented person with my academic history in biochem and environmental sci.

Part of my reason for posting in the beginning was to make it clear to people what risks can be associated with OHS and that situations such as is do not easily appear in stats.

I have not died, I have not required reoperation for valve failure and according to some views of the surgery I am an excellent example. Healthy with good blood pressure good metrics of the valve.

Another reason was that I was in hospital and as tired of hearing how OHS is a cake walk from people, willingly signing up for two and three surgeries (and yes I read such things here) to avoid the "horror" of anticoagulants. I was initially anxious about posting because I did not want to make the lives of those who are just becoming aware of their need for OHS more anxious.

 

[Heather Anne]

pellicle,

I'm sorry you were anxious about posting because your experience was so fraught. I would hope that no one, whether their experience was a cakewalk or whether it was riddled with complications, would feel shy about posting here. This forum, for those in the waiting room at least, serves to educate AVR patients about the wide range of experiences that people have with this procedure. While it can be comforting to hear the good stories, the more complicated stories help mentally prepare us for what might go wrong. Only if people post about experiences on both end of the spectrum will it serve its full purpose, in my opinion.

I hope we hear some good news from you soon. My heart breaks for what you have been through.

 

[pellicle]

status update

status update

Yesterday I went to my infection control specialist. We reviewed my current status (which included some markers like CRP, triglycerides and cholesterol) and he examined the wound.

He was happy with the appearance of the wound and the fact that there had been no recurrent returns of infection breakouts (and my CRP was 5, which is good).

We discussed where to go to from here and he suggested that I remain on the antibiotics for some time longer. his reasoning was (in my view) sound.

However we do not know if it is gone, or if there is perhaps some small pocket out of reach of the blood circulation system that is perhaps walled off in (perhaps thin) piece of scar tissue. Going off antibiotics could therefore do one of the following:

* nothing will happen as its gone
* it may begin growing immediately and within a month we'll see evidence
* nothing will happen for some time, but in some event (like a sickness, a trauma from a small accident...) it may resurface and we will not be suspecting its arrival (this stuff has a known history of smouldering for years)

So, since the infection was also under the sternum (the 2nd debridement removed the goretex over the pericardial sack) and thus very close to my heart, such a re-emergence could indeed then infect the valve or (worse) the aortic graft. Such would require a reop which would have seriously significant chances of quite grim outcomes for me (recalling this was my 3rd operation - so scar tissue is an issue, that an infectoin of the graft would be a very complex replacement).

So he suggested that without any obious endpoint to target and that I have had no adverse reactions to being on amoxycillin that I remain on the anti-biotics for another 5 years *(reviewing every 6 months).

In discussion we concluded to not do the rifampicin treatment at this point because:
- we have no way of knowing if there is anything there now
- we thus have no way of knowing if the rifampicin has actually completely killed whatever might be there (or just reduced its population to a now resistant strain of whatever might or might not be there).
- by not using it now, we have it as an option in future if there is a breakout down the track.

So I'm still on 3 500mg capsules per day plus my warfarin.

Thats all for now :-0

 

[epstns]

I guess that's as good as you could hope for -- some stability and a careful watch while continuing meds that you seem to tolerate. I, too, would agree to continue for a while, as I would not want to take a chance until I'm more confident - knowing that there is no 100% guarantee.

 

[pellicle]

Steve,
I agree that its certainly far from a bad outcome. I'm fortunate that the infection specialist actually respects my views and operates inclusively (so discussions were discussions).

Personally I would much favor a prolonged precautionary approach over a roller coaster of hospitals and having my sternum cut out.

Anyway my dentist will be happy as now he won't have to nag me about my antibiotic cover prior to descale and cleans

 

[river-wear]

Wow, pellicle, you've been through a lot. I was too squeamish to see all of the details, but wanted to offer my "positive vibes" that the continuing amoxycillin will be nothing but a precautionary measure and the infection has finally been eliminated.

 

[marc_kowal]

Glad your appointment went well!

Just wondering if there is any concern since you will be on anti-biotics for so long, that you will will build up a resistance to anti-biotics for any future issues? Or that perhaps you would need an additional boost for pre-medicating before dental work?

 

[cldlhd]

Hope all is well buddy, I'll be keeping an eye out

 

[pellicle]

Hi

Just wondering if there is any concern since you will be on anti-biotics for so long, that you will will build up a resistance to anti-biotics for any future issues?

Thanks for asking, and if you don't mind I'll answer in more detail for anyone who may later read this (should they get a propi infection).

nope, the concern with antibiotics is that you will have a reaction to them, but fundamentally antibiotics are not like drugs in the sence that they do not act on us. Antibiotics work by inhibiting bacteria from growing (by inhibiting an essential component of their growth which our cells do not have). As such antibiotics do not kill bacteria, they just stop them growing. It is our immune system which kills them. So Anitbiotics hold down the bacterias coat behind their arms while our immune system can slug away.

Essentially all of us have total resistance to antibiotics already, as it does little or nothing directly to us.

As to the issue of selecting for (aka breeding) a resistant strain, well only if they survive. Then it would only be of use if they could get out and as its not a contagious bacteria. However because its a normally a skin surface bacteria and now buried beneath my skin its not in an environment where it can even move around in a natural way.

Best Wishes

 

[skeptic49]

I am sorry to read about the tough time you have had with this difficult "bump." Your experience is sobering and your point about repeat OHS vs. fear of anticoagulation is well taken. I note that the 2014 guidelines now state that it is reasonable to choose a mechanical valve as late as age 70. This is a reflection of longer life expectancies and better anticoagulation management practices, I suspect. For me, at age 65 with AVR pending at some point, and a family history of longevity, a mechanical valve looks more and more like an option to seriously consider. Best wishes for the future.

Jim

 

[Nupur]

I am sorry to read about the tough time you have had with this difficult "bump." Your experience is sobering and your point about repeat OHS vs. fear of anticoagulation is well taken. I note that the 2014 guidelines now state that it is reasonable to choose a mechanical valve as late as age 70. This is a reflection of longer life expectancies and better anticoagulation management practices, I suspect. For me, at age 65 with AVR pending at some point, and a family history of longevity, a mechanical valve looks more and more like an option to seriously consider. Best wishes for the future.

Jim

Thank you for sharing your story, it's quite a ride you've had.
Jim, you're still in the waiting room! Me too. It's been 6 years, maybe i've got a few more. I don't know what I'll do if I can't get a repair.

 

[skeptic49]

Jim, you're still in the waiting room! Me too. It's been 6 years, maybe i've got a few more. I don't know what I'll do if I can't get a repair.

Yes, Nupur, I'm still loping along with my stenotic bicuspid aortic valve. My next echo is in October. I am now 10 years out since the diagnosis yet not noticing any of the classic surgery trigger symptoms. We shall see. You may indeed have "a few more" years on that mitral valve.

Best wishes,

Jim

 

[pellicle]

Hi

Thank you for sharing your story, it's quite a ride you've had.

you are welcome, and indeed it has been a real life roller coaster with more ups and downs than I care to mention.

I don't know what I'll do if I can't get a repair.

without any knowledge of your age / other significant medical issues my vote would be ditch the repair, get a bileaflet pyrolyticcarbon mechanical and it will more or less be just a thing of memory. Depending on the existence of other factors (co-morbidities as they call them) a tissue valve would be my next suggestion. But without knowing much more I can't say more.

Best wishes and I hope you remain in the waiting room, while it may seem an anxious place, I can assure you that compared to where I sit its relative tranquility.