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

[gerrychuck]

Well, here's my opinion on your contributions, Pellicle: KEEP WRITING! You have never failed to respond to others with needed information on scores of subjects, which has been appreciated by a great many people, myself most definitely included. Surely you have every right to tell your own story and voice your views which have been shaped by your unique journey. So what if it's not all sweetness and light? Neither is life, and surely anyone who has reached the point where they need to seek information on this forum understands that very well. Obviously we all have our fears for the present and the future, and seeing and hearing the success stories helps us sleep at night, but there are lots of people posting who are having problems, expected or unusual, who need to be able to post their stories or ask for information or just reassurance and know that it is welcomed by all of us who benefit from this community. I'm sure there are others out there who feel like you do, but are reluctant to post for the same reasons you mention. I believe that one of the benefits of your posts is that they validate that perspective and help people summon the courage to post themselves. That alone is an incredibly worthy contribution. From my perspective, you are a valued and appreciated member of this community, who has welcomed and supported countless others; it saddens me that you don't feel that in return, and I hope that you do feel it from me, up here in the frozen north. Your contributions are thoughtful, intelligent and insightful, and I think it is always a good thing for all of us to be reminded once in a while that OHS should never be taken lightly. I wish you healing, and look forward to your future posts.

Gerry

 

[pellicle]

Thanks for you replies. I talked myself out of looking here this morning, half expecting to be told I was foolish or ignorant. The kind messages I found were very welcome.

Thank you

Perhaps this situation has made me feel a little over anxious.

Before November of 2012 I had never heard of the bacteria which infects me. Not getting any meaningful information out of the medicos I naturally (well as is my nature) turned to research. In fact I didn't even really start researching the medical histories of this bug till the second debridement began to show it was not successful.

To date all I know about it is the following
* it isn't easy to identify due to difficulty in culturing it
* it is a relatively common post surgical infection where prostheses are involved
* while not the scare story of MSR it is none the less problematic to remove
* treatment can take months or years (I am at 4 months now)
* if not treated can lead to very severe complications
* it is regarded (perhaps smugly) by the medicos as a whimpy bacteria that is easily defeated (let's see how many months whimpy takes to kill off with no recurrence or relapse shall we)
* it gets you down being treated and hospitalized over such a long period

Again thanks for the words of support.

 

[escargome]

pellicle,
I for one would never call you foolish or ignorant. You are stating what has happened to you and what can happen to anyone of us. Keep us updated cause the possibility always exists that this information might come in handy for someone down the road. I think of you often and hope that life will show you some sunshine soon.

 

[pellicle]

Hi

well today was review day, things are still oozing, but the infection control specialist is not concerned about that. He said that the amount was not a concern.

I discussed my issues with him and he agreed that all my concerns were real and valid, but that he felt the situation was not serious and was tending towards getting better. He was unable to make it clear why he felt that, but just in his experience it was looking like it was progressing positively.

He anticipates that I may need to be on antibiotics for some months yet, and perhaps even years (for the reasons I have already mentioned in my above posts).

Lacking tools such as a tricorder

we can only make guesses and intuition about what is actually there. If the wound closes and ooze is still occuring (as last time) then we will undertake further investigation (such as MRI's looking for pockets of infection). He agreed that the blood tests CRP counts is only an indication and not even a certain one (as I also uncovered in my readings).

Meantime we continue treatment and see what happens next

 

[ski girl]

Well it sounds like things are on the improve . . . finally, eh? Must be all the good wishes aimed at you from all corners of the globe. Keep up the anti-bacterial thoughts, I'll continue to send them your way too!

SG

 

[pellicle]

thanks SG ... hope your fingers aren't going to be distorted after the crossing for so long

 

[Greg a]

I am so glad things are looking to be headed in the right direction as the resident over achiever of infections i am glad you have a good health team to work with....I am curious as to how frequently you are having blood draws and lab reports tracking cell counts?

Praying it keeps looking up as you know I have been there,done that and really did not want to buy the t-shirt.....the antibiotics are a little price to pay as there are members of our sternectomy support group on them for life even after the price they have paid ....so keep healing !!!!

 

[Lucky]

Hopefully things are starting to be on the up for you now.
It is totally unscientific but when you have been in the medical profession for some time you do just get a "feeling"" about somethings and hopefully this specialist"s experience is giving him this intuition.

Anyway enough of my prattle but sincerely hope that each day finds you feeling that bit better.

Adrienne

 

[pellicle]

Hi Greg

I am so glad things are looking to be headed in the right direction

me too ... I have a friend (some years older than me) who underwent 'dehisence' at home after his OHS. He spent 10 years and lost his sternum. He now (in his retirement) spends his time talking to similarly aged gents about their OHS and recovery.

One seldom finds a worse story than his (nor does the healthy mind seek such things).

I am curious as to how frequently you are having blood draws and lab reports tracking cell counts?

weekly

Praying it keeps looking up as you know I have been there,done that and really did not want to buy the t-shirt...

me neither ... and thanks for the well wishes.

 

[pellicle]

Anyway enough of my prattle but sincerely hope that each day finds you feeling that bit better.

thanks

and all encouraging prattle sincerely appreciated

 

[epstns]

Pellicle,

I would hope that nobody around here would criticize you for having a negative viewpoint. We have all been through but a little bit of the mayhem you are currently battling. We should all realize "There, but for the grace of God goes you or I." I am one who had some complications but I continue to tell people that if they hit what I did, it will all turn out just fine. I do not emphasize that there are others who have or have had it far worse. This is just a choice I've made - that I do not want to scare anyone into making a negative decision. Also, I am far from qualified to write or speak of how bad it can get. The fact that we have folks like yourself and Greg is sufficient. You (and Greg) and you alone are the ones qualified here to speak of that which can happen, and I would hope that nobody here would ever try to stop you. You speak truth, from personal experience. You have shared how difficult it has been, yet here you are with us, continuing the fight. How could we ask/tell one such as you to stop setting such a good example?

 

[ski girl]

Yeah, what Steve said. In spades.

 

[Lucky]

Hi Pellicle,

Really hoping that no new is good news.
Keep us up to date.

Adrienne

 

[pellicle]

Hi Adrienne

Been away for Easter

But during my time away I found that my energy levels are returning to a better level.

Discharge now minimal too

So let's hope the last burst of ooze was the last and its all mending properly now

Thanks for the sunshine thoughts

 

[gerrychuck]

That's good news, Pellicle; so glad to hear it

 

[pellicle]

shaping up for round 3?

shaping up for round 3?

Hi

well the wound from the second debridement operation has successfully healed over, but I was a bit concerned with things all during the while of that.

Not having anything very conclusive I mentioned it as concerning but not alarming. Well a week after the last review the wound seems to be showing signs of pus wanting to get out from underneath (again)

the repeated mantra of "this is a whimpy bacteria, easily defeated" seems to be more a reflection of the infection control managers desires than a statement of fact. As my readings have revealed, it can be quite the stubborn one to remove.

This process started with my first debridement surgery in Nov 2012.
I am meeting with my GP (general doctor) today and have sent images to surgeon and infection control specialist today.

Don't let anyone ******** you ... propionibacteria is tricky to remove when it gets involved with wires and prosthetics.

 

[escargome]

pellicle, you are so right. Do NOT let these doctors give you some song and dance. Infections are not always easy to defeat and as you say it is quite likely that it is wishful thinking on the part of your infection control specialist. Can you get another infection control specialist opinion? I hope that things turn around for you. I will be sending you lots of positive vibrations from this side of the world.

 

[Ovie]

Excuse my language, but holy ****. I'm so sorry to hear about all of this happening. My heart goes out to you and hope things get better or have gotten better! (I'm late to the thread). Can I ask, before the swelling, was there any discomfort and how long did it take to swell up that much? Also were you using the same doctor during this entire time or did you venture out for a second opinion on what could be done to get this fixed? The reason I ask is because the top of my incision gives me issues, it doesn't swell but it's very sensitive and sometimes painful, my cardiologist believes it to be Arthritis, but my surgeon doesn't think that at all. So I figured I'd ask how it all started?

 

[pellicle]

Can I ask, before the swelling, was there any discomfort and how long did it take to swell up that much?

I had been complaining of discomfort in the sternal wires. The surgeon said that the wires didn't usually cause problems ....

Also were you using the same doctor during this entire time or did you venture out for a second opinion on what could be done to get this fixed?

I pretty much had it swell up suddenly, so I just went to the same surgeon. The infection control specialist is someone he has recommended

 

[Lucky]

Oh Pellicle cannot believe your latest news!
No way does this seem to be a wimpy infection rather a low grade bug that has got well and truly entrenched and lulls
everyone into a false sense of security only to make a re-appearance.
Can only send you best wishes and encouragement to keep your spirits up but hell this would try the patience of a saint.

Adrienne