Another mistake... Or was it?

When I wrote the post "We learn from our mistakes", there was no doubt in my mind that the doctor was at fault and I should have confronted him about it.  However, this story beats a different drum.

The first medical problem I ever had was my kidney disorder, cystinuria, which was diagnosed in 1994.  Unfortunately, as you would know if you were ever a sufferer, the treatments are not perfect and often carry some nasty side effects.  So one really has to weigh up the cost versus reward.

One such treatment for cystinuria is a drug called penicillamine.  Now penicillamine has a list of side effects as long as your arm, but is considered the best drug for treating cystinuria.  I know now that a side effect of this drug is peripheral neuropathy (CIDP), but back then it was not communicated to me neither was it listed in the long list of side effects that came with each box of drugs.

So I took the drug and lo and behold I now have CIDP.  A mistake I have paid for the last ten years.  But was it a mistake?

Firstly, the number of cases linking penicillamine to CIDP were very few, and a search by my doctors post my diagnosis did not reveal one case of a cystinuria patient on penicillamine contracting CIDP.  And if the pharmaceutical company that manufactured the drug did not list CIDP as a side effect, how was my doctor ever going to know about it?

This point helped me rationalise in my mind that my doctor, and even the pharmaceutical company were not negligent in my contracting CIDP.  The irony is at the time I talked to a lawyer (informally) and his reply was "You have a case".  I don't think I could live with my self if I decided to sue in this case, as I really feel based on what we knew at the time, no party involved was negligent.

Secondly, if CIDP had been listed as a side effect would it have changed anything?  Honestly, no.  At the time I took the drug I had no idea what CIDP was.  It would have just been another name on the list of side effects, and it would not have altered my decision.

So was it a mistake?  I say no, it was more like a horrible accident, and the blame in my opinion, falls with no one.  After all, if a meteorite falls on your head do you get to sue NASA for failing to detect and warn you about it?

Sadly, these days it is too easy to apportion blame, and realistically an individuals shallow victory only adds to the detriment of society.  After all, next time you whinge about your doctors bill is, ask him how much his malpractice insurance is.  In my case, I could have sued, I could have won, but I'm glad I didn't.  Until next time, stay well:)

We learn from our mistakes

When I wrote the post "My Biggest Mistake" I neglected to go into detail about what I learned from it.  It was a really important lesson that everyone who is consulting a health care professional should know and I learnt it the hard way.

NEVER let your doctor call the shots without querying him.  I see it all the time where people blindly follow their doctors instructions with total blind faith, whether the doc is right or wrong.  In my case, the doctor thought he was right but he was wrong and it cost me big time.

When ever I have a procedure now I know exactly what is going to happen during the op and post op.  If the doctor looks like he is cutting a corner I will pull him up on it.  Fortunately it has not happened again, but, pre-operatively I am so obsessive about it I don't think the doctors would dare.

When I had my very first kidney stone my parents were over seas, but I was lucky enough to have a close family friend stay with me while I proceeded through the zoo, which is more commonly known as emergency.

As a youthful 18 year old I was almost embarrassed by the way he assertively placed himself in the way of the doctors and nurses, writing everyone's name down and making sure they were doing their job properly.  It was amazing how quickly everyone started jumping around looking after me.

Looking back, he did exactly what I would do now.  He wasn't rude or aggressive, but was very assertive and certainly taking no nonsense.  If only he had been there when I had my first perc?  If you are reading this, you know who you are, and thank you.  Until next time stay well:)

My biggest mistake

Today, I have decided to give you an example of the biggest mistake I, and my medical team ever made with my medical management.  I think that this is important as it is incidents like this that I draw my knowledge on how to best manage oneself medically.  The incident I am going to refer to was in 2001 when I had my very first perc.  


Percutaneous nephrolithotomy, or PCNL or perc, is a procedure for removing medium-sized or larger renal calculi (kidney stones) from the patient's urinary tract by means of an nephroscope passed into the kidney through a track created in the patient's back.

So before I had the procedure my surgeon ran me through everything and also said that afterwards he would order an x-ray just to check he had got all the stone.  Three days after the procedure he did not order the x-ray but did order the removal of my nephrostomy tube which would allow access back into the kidney if needed.


When I quizzed the surgeon about the x-ray he said that there was no need as he was confident that he got all the stone.  So the tube was removed and along with that easy access to my kidney.  Three weeks later I had a follow up appointment and an x-ray and to my surprise he missed a bit.


That mistake landed me back in hospital for a further four operations, eventually ending in another perc a year and a half later.


So what did I learn from this?  First, you must take charge to some degree for your own medical management.  Second, even when you are feeling terrible, you still need to be assertive.  Lastly, I should have sued him.  A lot of the time I think that we sue to often and there are other times I could have sued and won but I didn't think it right.  However, in this instance the situation was caused by my doctor being complacent and negligent.  It cost me four more operations and seven days in hospital and who knows what it did to my mental health.


Next time I will talk about other mistakes I have made.  There are a few of them, but I have to admit that some of them I would even make again as in hindsight with the information available to me at the time I would make the same choice.  Until then, stay well:)