Following up on the 2012 issue

[pellicle]

Its been a long road, which may be coming to some sort of conclusion soon

http://cjeastwd.blogspot.com/2017/10...-labelled.html

That conclusion could easily be "lifelong oral antibiotics" or "freedom"

Will post the results here rather than "that thread" to spare the delicate from pictures of reality and (as Agian observed of another picture) an upset man.

 

[epstns]

Here's hoping that all these years of antibiotics have sent those buggers back to the stone age, pellicle. You've paid your dues, and then some. I hope you are now granted your freedom.

I've had my share of being radio-active. It isn't all that it is cracked up to be. . .

 

[dick0236]

Its been a long road, which may be coming to some sort of conclusion soon.......

........That conclusion could easily be "lifelong oral antibiotics" or "freedom"
.

I've got my fingers crossed that it's "freedom".

 

[Superman]

Wishing you well on a favorable outcome. Antibiotics might be one of the greatest medical discoveries of the last 100 plus years, but they can create a whole mess of problems on their own.

 

[DJM 18]

Good luck !!!

 

[pellicle]

Hey, thanks for the well wishes guys.

Just so you know the schedule it will be:

1. wait till I hear the results of the scan as intrepreted by my Infection specialist Dr, If its clear then cease antibiotics and go to next stage
2. follow up scan in 3 more months: if clear continue
3. follow up scan in 6 months: if clear continue
4. if after a year I'm still clear I'll probably have another scan in a year

at that time I'll be comfortable that its gone. BTW, each PET scan is $450 out of my pocket (not to mention the fuel for the 400Km round trip to the location as well as parking at hospital gouging rates, so over $500), as this is not covered by any "health care" because of its nature. But ... well ... you can't take it with you right?

Back at the time of my second debridement I identified this graph in one of the very few studies of propioni-bacteria infection of the sternum / prosthesis, its results were quite sobering and led my infection guy and I to make the decision of ongoing Suppressing Oral (antibiotics) Therapy [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/9\/8386\/8581012731_9f8dd97b07_b.jpg"}[/IMG2]

... as you can imagine I was big on informing myself on this issue at the time and quite vocal in dealing with my specialist. He initially described me as intense. I repied that "if your life was in this situation would you be passive or agressive in your approach" ... he nodded and we got on like a house on fire after that point.

Will update as it occurs

 

[ottagal]

Pellicle,

Thinking of you and really hoping that you get some good news. You certainly deserve it. Lots of costs associated with your health, but hey... you are worth it.

Thinking of you and sending my very best of wishes,

Will stay tuned...

 

[ottagal]

Pellicle,

Thinking of you and really hoping that you get some good news. You certainly deserve it. Lots of costs associated with your health, but hey... you are worth it.

Thinking of you and sending my very best of wishes,

Will stay tuned...

 

[Agian]

I think it will be good news. Thinking of you matey.

 

[Eva]

Wishing you the best results, pellicle.

 

[ForeverThankful]

Hoping that you get some good news!!!

 

[Warrick]

ditto on getting only good news!

 

[Ryanvs]

Good luck mate!

 

[epstns]

I'll say one thing -- since you obviously reviewed and understood that graphic, and unless I am mis-reading it, it isn't very encouraging (in general), you MUST be a very goal-oriented and highly focused individual to pursue aggressive treatment over the long haul. Too many patients might have just given in to. . . "whatever." But they would likely not be here to join our band of merry folks.

I, for one, am glad you are INTENSE!

 

[Seaton]

Yep. Thumbs up for a good outcome, pellicle!

 

[honeybunny]

I vote for freedom. Best wishes~

 

[Paleowoman]

All the best !

 

[Northernlights]

Wishing you all the best Pellicle for clear scans. That is such a scary graph - thank goodness yours was a local sternal infection and not endocarditis, dreadful though it has been for you, and that they were able to remove the infected goretex. I appreciate what an awful experience this has been for you, combined with the anxiety of wondering whether the infection is still somewhere.

Just in case anyone with a sternal infection ( which is bad enough) gets more worried by the above graph, it's worth emphasising that it doesn't show cases of sternal infection like Pellicle's, but of a Madrid hospital's experience with 16 cases of valve endocarditis with P.acnes: it's the same organism but endocarditis is very different and even nastier ( fortunately rare). The flow chart actually depicts their endocarditis mortality rate of 18.7%.

Again just in case it worries people (quite a few members over the years have had endocarditis ), more recent series of propionibacterium endocarditis have shown much less mortality, including a recent series of 13 patients from Rotterdam (R.van Valen, 2016) with only 1 death 2 years after surgery from another cause. Most had valve replacement and antibiotics, but 1 patient whose valve was not leaking recovered with 6 weeks of antibiotics ( their mortality for all types of endocarditis was an impressive 4.4%). All patients had c. 6 weeks of antibiotics after surgery, mainly penicillin with or without rifampicin.

Interestingly for your case, Pellicle, they stated in the e-discussion:

'Using the current literature and our own experience we would not advocate longer terms of antibiotic treatment in patients with P acnes PVE or a conservative approach without surgery [3,4]. Six weeks should be sufficient. If a patient is inoperable, the idea of suppression therapy with prolonged antibiotics could be entertained. In our series we used a conservative approach in one patient. This patient did not show a dehiscence of his mechanical valve. This seems to be the pivotal point for a potential successful treatment of PVE due to P. acnes without surgery.'

So given that it's the same organism, since you had surgery to remove the infected goretex, and you've had a lot longer than 6 weeks antibiotics, that looks quite hopeful for the eradication of the infection. I really hope so.
It doesn't seem fair that your scans are not covered.

(Obviously these were remarkably good results and valve endocarditis is always very serious, particularly with a prosthetic valve. Early diagnosis is the key. Anyone with a persistent low fever / flu-like symptoms should always get checked out and have blood tests for infection markers).

 

[pellicle]

Hi

and thanks for the well wishes ...

...That is such a scary graph - thank goodness yours was a local sternal infection and not endocarditis

agreed ... although as it was (as you later observe) strongly infected on the goretex sheet, so there was voiced concern that it may have or may yet spread to the graft or the exterior of the prosthesis ... which encouraged me to research those outcomes (to "think ahead to what next")

I must say I'm surprised and a little flattered that you know the details of my case so well. Given that I'd had to often reiterate it to many (both here and in my actual life) and remind them of the steps and stages .. so I'm pleased in a way that you've taken such a professional view of it.

Just in case anyone with a sternal infection ( which is bad enough) gets more worried by the above graph, it's worth emphasising that it doesn't show cases of sternal infection like Pellicle's, but of a Madrid hospital's experience with 16 cases of valve endocarditis with P.acnes: it's the same organism but endocarditis is very different and even nastier ( fortunately rare). The flow chart actually depicts their endocarditis mortality rate of 18.7%.

indeed, I was aware of the (of course I didn't just find that graph, I found that study, years ago now). It was of interest because:

1. it showed the possibilities of what Propi can do (and my Infection Specialist was regularly repeating that Propi was a weak and easy to defeat organism ... right up till my second debridement surgery)
2. the second debridment showed that it was very proximal to the graft and the prosthesis. This posed a significant threat for if it colonised that then the outcomes I face would be at least as risky as those above because I was already on my 3rd OHS and because my graft was significantly more complex in nature due to my bovine anatomy and the location of the graft on the arch (proximal to the carotid arteries)

So I took this as an example of what I didn't want to be involved with due to mismanagement at an early phase.

Again just in case it worries people (quite a few members over the years have had endocarditis ), more recent series of propionibacterium endocarditis have shown much less mortality, including a recent series of 13 patients from Rotterdam (R.van Valen, 2016) with only 1 death 2 years after surgery from another cause. Most had valve replacement and antibiotics,

which I suspect was as a result of better treatments resulting from the increasing experience in dealing with propi ... which is of course good (that we improve iteratively).

Its interesting that you raise rifampicin as that was something I discussed with my Infection Specialist (supported with additional studies on infected implanted steel cages in rats) as it showed the best chance of defeating the bacteria. Primarially because it works at penetrating biofilms so well. My IS said that we didn't have sufficient evidence that a biofilm was involved (as if we needed a setback to then go "oh of course its a biofilm") and that he wanted to keep that as a "nuclear option" in the future. He also raised it would make management of my AC therapy via warfarin next to impossible , to which I responded that I'd hapilly inject heparin daily for a month if that was needed ... I'm sure you know these things anyway I'm just bringing them up conversationally

Interestingly for your case, Pellicle, they stated in the e-discussion:

'Using the current literature and our own experience we would not advocate longer terms of antibiotic treatment in patients with P acnes PVE or a conservative approach without surgery [3,4]. Six weeks should be sufficient. If a patient is inoperable, the idea of suppression therapy with prolonged antibiotics could be entertained. In our series we used a conservative approach in one patient. This patient did not show a dehiscence of his mechanical valve. This seems to be the pivotal point for a potential successful treatment of PVE due to P. acnes without surgery.'

So given that it's the same organism, since you had surgery to remove the infected goretex, and you've had a lot longer than 6 weeks antibiotics, that looks quite hopeful for the eradication of the infection. I really hope so.

yes, I would think so. However (as you say) I simply can't know without taking these tests and the risks. I have discussed this yearly with my Infection Specialist and raised points such as:

• by this time one would expect an infection to be eradicated
• if an infection remains then by this time it must be the descendants of of those which were highly resistant to antibiotics
• if the bacteria was remaining as a resistant strain it would perhaps have manifest by now in additional symptoms
• for my case (because I'm on antibiotics) its impossible to look for it in the blood (where it may not be by the way, for such is premised on the bacteria being free floating and not having ensconced itself in a biofilm) due to the influence of the ongoing Oral Antiboitics

It doesn't seem fair that your scans are not covered.

I can assure you I have long ago given up the notion that life is (or indeed perhaps even should be) "fair". I am happy I'm 1) mentally equipped to deal with this 2) sufficiently well funded to afford it where it is not covered by society.

(Obviously these were remarkably good results and valve endocarditis is always very serious, particularly with a prosthetic valve. Early diagnosis is the key. Anyone with a persistent low fever / flu-like symptoms should always get checked out and have blood tests for infection markers).

I agree and you'll note in my previous posts that when "mysterious" infections of the sternum or wires come up here that I always agitate for careful examination, and consideration that it may be propi.

So in furtherance of this I'll add: The Strep and Staph bacteria are virulent enough that they are readilly identified in blood samples. They have for instance much shorter culture time requirements. As (I suspect that you know) Propi has a much longer culture time (and also often media specific needs for successfully culturing it) its often missed ... even if its found its often assumed to be a "false positive" due to it being a normal consensual skin flora. It may be that the only effective marker is CRP elevation that can not otherwise be explained.

vexed

I assume you saw my post about propi living in bones? A short study with limitatoins, but provides questions which make some of the simplistic answers I've had seem less strong.

Lastly I'll say that during this process (particularly from Nov 2012 through to May 2013 I was in a difficult state. The difficulty of being in hospital for extended stays, returning home carrying around VAC pumps and IV pumps, the bi-daily dressing changes (of the vac pump) which included debriding the wound, the other compounding effects on my life (the losses) ... all made for a very horrible time.

I would say that it took some years to be past the darkest parts.

Thanks anyway for your due diligence with respect to me and with respect to my post not causing fear in others.

PS
Lastly I'd like to add that without doubt in my mind part of my "healing process" over the time since my infection has been my participation here (I did not regard my 3rd surgery in and of itself worthy of seeking out a place such as this, that came with the despair of being in hospital in the year after).

I have been given much care and good will here, and as well I have (in helping others) found more answers about myself and been given reason to take my INR management process to a higher level (in answering challenges and assisting others).

I would like to observe that all such experiences (no matter if its your first or your last OHS) result in great "agitation". Taking that metaphorical meaning it is not then without energy that we take what can be a randomizing process and reshape ourselves into something else.


[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/twistedsifter.files.wordpress.com\/2012\/05\/visualizing-magnetic-fields-with-iron-filings-1.jpg"}[/IMG2]

Thermodynamics suggests that without energy that everything tends to randomness, and for our minds that randomness can be a kind of oblivion (thus I normally cite the Bene Besserit Litany from Dune, which exemplifies that conscious process to avoid oblivion).

[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/i.pinimg.com\/originals\/56\/16\/de\/5616de4812bf8d4fb4c476f80cac4929.jpg"}[/IMG2]

so to all of you I would like to say thank you for your inputs into the healing of my heart (which has not been of the anatomical one).

Best Wishes

 

[spartangator]

Thinking of you as you go on the journey. All the best, and thanks for sharing. Your perspective and perseverance help many others