Routine PM replacement... OK to rant?

I feel betrayed & frightened by the aftermath of my 2nd pm replacement last Friday....
I noticed an IV bag & l asked pre-op nurse what it was.... antibiotics.... ANCEF... she wrote it down for me...I told her I can be sensitive to antibioitcs & have had C-diff twice ( can be deadly infection of colon) ... we are running out of time for the procedure to start.... I tell her you can look it up on line to learn which antibiotics usually lead to c-diff... no time... whisked away... oh well....
Next day the diarrhea started, plus itching...Sunday it worsened...I looked up ANCEF... "high percentage of patients get C.diff with use.... not recommended for kidney patients as it can cause kidney falilure..(.I have Renal insufficiency. )Also causes intense itching.... the surgeon should ask patient if she has ever had a reaction to penicillin..."
Monday I call the office.... nurse Sue is so busy proving me wrong & dismissing my words that she doesn't ask about the severity of symptoms..... she texts Dr. at hospital, he says if no rash the itching is not from the antibiotic.... ( not true... often folks will start w/ itching and then get the rash, and then can move to more serious reactions...)
"You had this drug for a previous procedure & this didn't happen, so not the drug! "And my favorite...." no one else has ever complained about this! "
Kidney doc's PA swung into action... ordered C.Diff kit, kidney panel test, asked severity of symptoms... THEN on Thursday , she called back to ask about status & check what med levels I am taking that are diuretic types... suggestions on potassium foods to consume....
No results on C.Diff test yet.... this is probably Microscopic Colitis brought on by antibiotic use killing the good bacteria in the gut....which keep the C.Diff pathogens in check. last time I had this, I was sick for a year.... literally 20 visits a day to the bathroom,,,, this is serious stuff.
I plan on writing a letter to the o who started the cardiology group to detail all this.
I got a follow-up call from the hospital , and told her all of this. She took it very seriously... it is protocol she said & we don't usually tell the patient. I suggested this was doctor centered concern & not patient centered. If I had a serious penicillin response, they would be liable....she asked why I hadn't mentioned this allergy... I told her, it's been considered a "response" not an allergy.... or a side effect. Had I known I was getting an antibiotic sooner I would have spoken up.
Sorry this was so long... I just spilled my guts... metaphorically speaking.....
Sunny

8 Comments

You are not an easy patient !

by IAN MC - 2013-06-30 05:06:05

Hi sunny.... I can understand you wanting to rant but finding the right antibiotic , for every situation,which suits every patient is impossible for the Drs.

-- the antibiotic has to kill the right bacteria. This is becoming a nightmare because antibiotics have been so over-used that the levels of resistance is becoming scary !
In the " bugs v drugs " battle ,bugs are beginning to win ; the future looks very bleak !!

- the antibiotic has to be well-tolerated by the patient. You have quoted the possible side-effects from ANCEF but EVERY antibiotic has a long list of possible side-effects

- you are quite a difficult patient to receive antibiotics ( not your fault but true ! ) you are susceptible to C.Difficile , you have renal insufficiency and you seem to be hyper-sensitive to their side-effects generally

- pretty well every broad spectrum antibiotic can cause C.Difficile to flourish for the reasons that you give so that is a headache for the prescribing Dr. One of the commonest treatments for C.Difficile infection is Vancomycin but you should be given this with great care because of your renal insufficiency

- Your renal insufficiency is an even bigger headache because most broad spectrum antibiotics which are suitable for prophylaxis during PM implants are excreted by the kidneys. If your kidneys don't work properly then you get a build-up of the a/b and this can damage your kidneys further. Having said that, I don't think your Drs should have used cefazolin ( Ancef) as there are less-nephrotoxic antibiotics available such as cefuroxime and ceftazidime

- One alternative would be to have a PM implant without any antibiotic cover but I don't think you would be very happy with that .... the Drs have to make a risk/benefit assessment .

I used to be in the antibiotics business and it is unfortunately true that the knowledge of antibiotics of most Drs is abysmal ! But I feel sorry for them, because with patients like yourself they are running out of options.

In your case, your Drs should seek advice from a medical microbiology specialist in the hospital , the person in the UK is known as the Consultant Microbiologist ( I don't know which country you are in so the job title may be different ) By the way, if anybody suggests asking the pharmacist, don't bother because their knowledge of antibiotics is also very limited !

Best of luck

Ian







Birds of a Feather, Sparrow!!

by sunny@heart - 2013-06-30 06:06:00

I just knew you would would write when you read this!! We should get together & tell our tales of malfeasance!! You made me laugh and yet I see the seriousness of your situation also. Maybe you could get a tattoo on your forehead warning the clueless! I think it will get worse not better as the docs are pushed for time with the new law....
I too have had some great docs who seriously listen, pay attention, treat me with respect, & are not threatened by my questions. I used to trust that the docs knew what they were doing; my son-in-law, a surgeon ,encouraged met to stop being Mrs. Nice lady as it could get me killed...and that it was OK to fire a doctor & find another.
Good idea to see about that Review Board... I'll see what Salem Hospital has. I can start with the patient advocate.
That issue of the hives over the incision... I was told the doc also injects another antibiotic into the incision over the pm.... perhaps the source of your hives?
And I like the hand out idea a lot!!! i have to learn to ask... do you use antibiotics of any kind?
At my intake, I mentioned the antibiotic problem & she said, " Oh, we don't use antibiotics. You get those from your primary care doc...." heavy sigh....

Thanx, Ian!

by sunny@heart - 2013-06-30 06:06:51

Thank you, Ian for your well-thought out post!
I understand how difficult it is to implant a PM without the protection of an antibiotic.... I was jut naive that they did that! Other times, the doc & I discuss options; the last time it was a PA & she went on-line to the lists of drugs most & least likely to cause an occurrence of C.Diff. I had no problems. But I was a part of patient care.... not a bystander.
My concern/rant is that I was given a drug without my knowledge and the protocol for Ancef is for the doc to question the patients' potential reaction to penicillin type drugs. It is in my records, but from intake 18 months ago & I doubt if he read my entire chart. However, on the first page of my chart is listed Renal insufficiency, in addition to stage 3 heart failure.. I have had kidney failure twice after my valve repair & a round of amiodarone. My cardiologist ( same practice) works hand in hand with the nephrologist on the meds he prescribes. I use no pain killers,or nsaids, etc to spare my kidneys.
When the nurse form the hospital called, she said she was going to recommend at the next board meeting that they change this protocol and make it a priority to ask about previous experiences with antibiotics. A patient could forget to mention it, or even be unconscious so a family member should be consulted.
Ian, I appreciate so much your weighing in on this issue and brain-storming with me!

Get some VSL #3

by MSPACER - 2013-06-30 09:06:27

I went through this many years ago from taking antibiotics for a dental procedure. Finally, a doctor recommended that I try VSL #3. I started out with two packs a day. You will see a difference very quickly. This is a special probiotic which will help you recover. Google it-you will see many people have good results with it. When I had my replacement, I took 2 packs a day before the procedure, and continued to take it through the month. I then went back to one pack a day which is for maintenance. Once your good flora is out of wack, you are never quite the same. Ask your doctor about it.

Got that VSL!!

by sunny@heart - 2013-07-01 01:07:38

Thanx for the validation about VSL..... I've been taking it for the past 5 years, interesting you know about it too. I am on a maintenance dose now so very easy to rapidly increase the dosage.
It was a microscopic colitis support group that told me about VSL,,,, some also take Florastor which is not killed by the antibiotic since it is a yeast.
So this time, i do have a few more tools in my tool chest plus experience.....
Thanx again!!

Sparrow... thanks for visiting my nest!!

by sunny@heart - 2013-07-01 02:07:31

Now this little tidbit is worth it's weight in gold! There are so many routine papers to sign, & I often just sign with a cursory glance... dumb me!! Not anymore!
I remember signing the one about permission to do what they deem necessary.... I thought at the time, they have me over a barrel... no sign... no procedure.
What a concept... change the contract before we sign it...!!
I appreciate these ideas.... I have spent so much of my life trusting folks who weren't trustworthy but that has changed dramatically in the last 15 years....
In my growing up & early years the squeaky wheel gets hurt, not gets the grease.But I am less fearful now of being "sqeaky".... the quiet wheel also can get hurt.....

IAN!! thanx!!

by sunny@heart - 2013-07-01 02:07:46

Hey! You chimed in again & I feel so validated by this info... and I think you are right that it comes down to lack of communication....!!
so each near miss I have medically, I learn a bit more, plus pick up some more tools for my toolbox! I see now I have to take every opportunity to inform the docs & aides of my issues, & not expect them to read the chart.... somehow seems strange that a doctor would NOT want to clarify things with you, And Sparrow has some great ideas of how to do that.

Thanks again for weighing in, I appreciate your input so much!

Hello again sunny@h

by IAN MC - 2013-07-01 06:07:12

Having read your replies I think I, too, would be having a rant in your position.

You say you were given a drug without your knowledge. I guess this happens all the time before and during surgery BUT it is really bad that they were apparently unaware of your medical history before the administration of the antibiotic.

It would seem that we cannot rely on Drs reading our records so it is up to us, the patients, to shout from the rooftops any concerns we may have about drugs at every opportunity.

The very last opportunity we have is that moment when the anaesthetist says " Now sunny@h, you will only feel a scratch " then is your last chance to stress
" Before you do that, is everyone aware that I am allergic to penicillin, I musn't take X, etc etc etc "

With your medical history though deciding the right antibiotic wouldn't be easy , it could end up as something of a trade-off ; maybe a reduced risk of causing a C.diff flare-up would be at the cost of less broad cover during your implant.

... that apart, their selection of antibiotic for you was not good ! They rightly gave you a cephalosporin antibiotic, ..these are chemically similar to penicillins but are broader spectrum and can usually be given safely to patients who have penicillin-allergy problems ,.

But their choice of cephalosporin could have been better, they chose one , cefazolin ( Ancef) which can have adverse kidney effects . There are other cephalosporin antibiotics which appear not to have these problems.

... at the end of the day, like many problems in life, it came down to lack of communication.

I hope you get better soon and stay "sunny"

Ian

























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