The most painful

After writing yesterdays post on pain, I got to thinking about what are the most painful things I have ever had to endure.  Normally, I would say that the most painful thing ever is the pain you feel right there and then.  Since right now I am not feeling any pain I thought this would be a great time to write it.

Kidney Stone 10/10 - No surprises here.  Kidney stones are agony.  Basically, the kidney is blocked by a stone so no urine can get through.  The kidney swells up like a balloon and pain is inevitable.  There are a lot of nerves around the kidney too so the pain is also referred.  It can stretch from just under your ribs all the way down to your knee.  Peeing is painful as the bladder is irritated which also makes you want to urinate more frequently.

IVIG headache 9/10 - People have described it as having your head in a vice.  I think not only that but it also feels like you have a vice inside your head pushing out.  The pressure also feels like it is squeezing out snake venom through your eyes and ears.  Kidney stones and an IVIG headache are the only pains I have had that are great enough to induce vomiting.

Nerve pain 6/10 - This is the pain I was talking about in my last post.  The hardest part is it normally happens when I am asleep and I wake up only after it is out of control.  It is also very hard to treat.

Tonsillectomy 6/10 - If you didn't know, before I started blogging I had my tonsils out.  The pain was quite substantial, but what was worst about it was the fact is hung around for about two weeks.  However, it was quite treatable and I'm really glad I had it done.

Kidney surgery 5/10 - As you can imagine with any surgery, it is rather painful but a hard one to gauge as when you wake up you normally have some analgesia in your system which will be combating the pain.  With Kidney surgery I am referring to a percutaneous nephrolithotomy.

Tonsillitis 4/10 - Not as painful as the op, but probably the worst thing would also be tasting the puss at the back of your throat.  After a day of antibiotics the pain would normally subside.

Headache 2/10 - A normal headache.  As with everyone I get headaches from time to time.  I put this one in for a comparison with the IVIG headache so you would know.

Vasectomy 1/10 - Sorry guys, but this was a walk in the park, and I hate to burst all your bubbles when you are pushing for that extra bit of TLC from you beloved.  My testicles hurt more with kidney stones.

Now this is my personal pain scale.  Feel free to agree or disagree I'd love to hear, but I hope it will give people an insight to what pain can be like for some people.  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:)

Warringal Private

Out of all the hospitals I have visited, I have spent more time at Warringal Private than any other hospital. With four PCNL's and a handful of other smaller procedures done at this place I have an intimate knowledge of the place. It was fairly good too.

On first impressions the place seems quite small, but that is deceptive. The hospital stretches on for ever, and at the back is a place called Streeton ward, and I went here to settle in before every operation, always a big plus. I also liked the way they named the wards as it adds an element of character and comfort to the place.

When I first went to the OR I felt very much like I was in a rabbit warren as the corridors were very small and there was one very poky elevator ride, but the four OR's they had were well serviced by their pre, and post-op, and in this place, the heart of the hospital everything seemed clean and well run.

The wards were very comfortable too all the rooms (which were one or two bed rooms) looked out over a courtyard garden or a park. Out of all the hospitals I have been to this one is the most homely. There is even ward access to outside which is a rarity in most hospitals, some rooms even had access to the outside via sliding doors. Another plus was they had good TV entertainment.

As far as negatives go I only have two. First, the food was fairly ordinary. Second was experiential. After my last PCNL I had a complication and they had to transport me to another hospital. This is a big negative for me as I would expect a hospital that offered the service of that procedure to also be able to cope with any complications that may arise from it.

Anyway, off to the Austin I went which will be the subject of my next post. Until then, stay well:)

What Should I wear? Part 4

So what should you bring to hospital? Some people say bring as little as possible because the hospital will provide everything you need. I disagree. Let me use the luxury holiday analogy. You are at a beautiful five star resort, everything is beautiful, waiters and hotel staff cater for your every need and your suite is cleaned every day and your bed linen changed. But even with all the luxury, nothing is quite as comfortable as that first night back at home in your own bed. Now hospitals are not like five star resorts, and unless you live in a clinic they are certainly not like home. But if you can bring a little piece of home with you, then it will make you feel a little more comfortable. Here is my list of what to bring:-

Loose comfortable clothing (one change per day, max of three) - It's not the L'Oreal fashion show, or dinner at the Ritz. Comfort is king. Tracksuit pants and t-shirts are great. Try to avoid buttons and tricky clothing it may seem trivial, but simple things like that can seem like a real effort. Slip on shoes are also preferred as it can be difficult to bend over to tie your shoe laces.

Pyjamas and dressing gown - because they are preferential to the hospital gowns. Hospital gowns are uncomfortable and leave your arse hanging out of the back. You will have to wear a gown at some point as you aren't allowed to go to surgery in your pyjamas.

Entertainment – Hospitals are boring, and when you are bored, anxiety and stress rise and you have time to start thinking about the discomfort. Bring something to entertain yourself. Books, portable game consoles, portable DVD’s, puzzles etc. Whatever will help you pass the time.

Toiletries – Focus on the essentials more than the luxuries. I bring toothbrush and paste, deodorant and soap. Soap is really important as the tiny soap biscuits they have in hospital are easy to drop and it is hard to pick something up off the floor during recovery. I don’t worry about things like my shaving kit as quite simply I really find I can’t be bothered, and lets face it, it’s not a fashion contest.

Pillow – Super Important! The bigger and the comfier the better. Hospital beds are made of plastic for hygiene and cleaning purposes, which means they don’t breath and you end up sweating a lot. I get a body pillow from spotlight and I pretty much sleep on top of it. After a week of hospital, it’s normally ready for the bin.

Creature comforts – If you are in for a long stay, you might want to decorate your hospital ward with a few things from home. Having a little bit of familiarity around will help you feel comfortable.

Food – Again, if you have someone bring you some home cooking that little bit of familiarity might bring with it some comfort (also, hospital food isn’t exactly 5 star).

General – Don’t forget to bring all your current medications and x-rays, and have all your questionnaires filled out as accurately as possible and sent in advance.

Well, I hope that this helps as my last installment on preparing for hospital. If you have any questions please don’t hesitate to ask. Until next time, stay well:)

What Should I wear? Part 3

Once you first realise that you need surgery you will probably find that your anxiety levels will be greater, and you will think of a lot questions that you will want answers to, so the first step is to know exactly what you are in for. Below is a list of questions that you might want to ask. Please bare in mind that this list is by no means exhaustive.

1. How long can I expect to be hospitalised?

2. What is the standard recovery period?

3. What is exactly involved with the surgery?

4. How long will it take?

5. What drugs will they give me (pre-op, during op and post op) and what are the side effects.

6. Will I need x-rays/ blood tests etc and when?

7. Will I need to go to ICU after?

8. What are the potential problems that can occur?

9. What care will I need on leaning the hospital?

10. Will I need any post-op procedures or treatment?

11. How will I feel after the surgery?

12. Can I expect any nasty surprises? (example is my catheter experience I talked about in my last post)

There is an awful lot to familiarise yourself with, but it is very important and once you have set your mind to the task it is not nearly so daunting. The best way is to make a list of what you need to know, and who best to ask about it. Leave the list for a day or two and every time you think of something else add to it. People you might want to source information from are:-

Your surgeon - With out a doubt the most qualified person that you will have access to about your procedure. Not only are they highly trained professionals, they are getting paid to answer your questions, so don't be shy or feel you are wasting and important persons time, ask away. If you aren't happy with the answers, you are more than entitled to seek a second opinion.

Your anaesthetist - As another qualified doctor, they are obliged to speak to or see you if you request. An ideal person to talk to about the medications you might be given or the effects of anaesthesia.

Nurses - Once your operation is over, your surgeon will normally move on to his next patient and the nurses will start to manage a great deal more of your care. This gives them a great deal more experience at helping you feel comfortable post-op. It is a good idea to go and visit the hospital ward you will go to prior to your stay. This will give you a chance to familiarise yourself with the place (as waking up in the hospital after anaesthesia can be quite unsettling as due to the unfamiliarity) and a chance to talk to a couple of the nurses who deal wit patients like yourself every day.

Other health staff - Physios, psychologists etc. If they have a role to play they can certainly give you the best advice on certain parts of your recovery.

Natural Medicine Practicioners - Can be extremely insightful in suggesting ways to assist in the successful management of your recovery

Other patients - Nobody know exactly what it is like to have the procedure that you are going to have more than someone that has had it before. If you are reading this blog you are clearly no stranger to the internet. There is a blog or forum on just about any disease or operation you can think of. Read the experiences of others, or chat with them to ask questions. I never consulted anyone about my first few kidney stone ops, and after I finally did I wish I had done so earlier. In six weeks I will be having deep brain stimulation surgery. I have already talked to people on the net and actually met one former patient face to face. I plan on talking to and reading more from other patients in the next couple of months.

Next time, what to and what not to bring. I'll give you my opinion on what things I feel will best help you through your hospital stay. Until then, stay wellJ

What should I wear? Part 2

Today I will write about the importance of staying as healthy as possible in the lead up to surgery.

It is important to stay physically healthy, because the fitter and healthier you are the more likely you are to have a speedy and easier recovery. Personally, I try to stay fit by doing regular light exercise. Even a 10 minute walk is better than nothing, and a great idea the morning of your surgery. You don’t want to over exert yourself, or ware yourself out, but to kick start your body in the morning will help you process and eliminate the drugs from your body quicker.

When I have surgery, I normally catch the tram to the hospital, and the short walk to the tram stop is all that is normally necessary to get the heart and body going. (Note: Don’t plan on going home the same way. Always have someone pick you up.)

It is also important to eat right and drink lots of water. The body works best when it is hydrated and had a proper intake of all the daily nutrients, which will make recovery easier. This should be maintained right up until you are nil by mouth or instructed otherwise by your doctor.

When I first started having kidney stones I used to think that the longer I went without eating the better, and sometimes I would stave myself for more than a day. Until one time an admissions nurse said I should have eaten more to maintain my fluid and mineral balance. So for my next procedure I followed her instructions and I woke up feeling stronger and the feeling of nausea I used to get was not present, and now I only get nauseous if I have a long procedure. You will also find that no matter how hungry you are before surgery, afterwards you won't feel like eating much so get your intake whilst you can.

Next time I will write about knowledge. Making sure you are up to speed on all on exactly what you are about to go through is critical. Until then, stay wellJ

What should I wear? Part 1

Hi all, I hope that good health has followed you since my last post.

Speaking of my last post I said that I would write about strategies to assist in the recovery process and minimise discomfort. After sitting down and putting together a plan for my post, I realised that there was an awful lot to write about so I have broken the topic down in to parts.

The first part will cover the most important strategy for coping with surgery and it actually starts before you even have surgery, and that is to be prepared. Preparation is the key. Doing the work now will make life easier later. Preparation is in four sections. They are mental, making sure you have the right head space. Physical, keeping healthy (all things considered). Knowledge, be sure you know exactly what you are in for. And finally, packing, what to and what not to bring.

Mentally, it is very important to be ready. If you are not mentally prepared and your thoughts are negative you can actually worsen your condition and sometimes even impose extra symptoms upon yourself that could have been avoided if you are properly prepared. Personally, I find that controlled breathing exercises and reminding myself of the long term benefits is enough, but if you feel that you need more it would be advisable to talk to a psychologist or counsellor.

Next time I will talk about the importance of maintaining good general health. Until then, stay wellJ

It Does Get Better - I Promise

Immediately after a surgery you will almost always be uncomfortable. How this discomfort prevents itself differs greatly depending on the nature of the person and the operation they have had. Some are obvious, such as pain in the effected area, and some less so like pins and needles or a sore throat. No matter what the discomfort there is one main rule - IT DOES GET BETTER! If you can remind yourself of this and know that relief will come over time, your mind will be stronger and able to cope with the trauma that has been set upon you. If you believe the discomfort will never go away, you will find you will most probably suffer more and for longer. Believe me, I learnt the hard way.

In 2001 I had my first PCNL (Percutaneous Nephrolithotomy). This procedure involved putting a tube in my back left side about halfway between my ribs and hip. The tube was punctured all the way through my kidney and into the collection system where access to the stone was achieved. The stone was then broken up and removed through the tube.

My first mistake was that I didn't have all the facts to begin with, so I had no idea what to expect. I had not asked enough questions and my doctor hadn't given me all the information so when I woke up from the anaesthetic I had a couple of nasty surprises. Firstly, I had a tube down my throat that had been assisting me breath under anaesthetic. Previous operations had always been shorter, and there had been no need for a tube, or it had been removed before I woke up. Secondly, I had a catheter inserted in my penis which I did not expect and stayed there for two days.

Anyway, I was uncomfortable, felt nauseous, had pain and was extremely irritable. I whinged to all the doctors and nurses, but it didn't help much. I was so irritable, my blood pressure had risen and my pulse was up around 95 bpm. I would toss and turn to try and find a comfortable position, I slept very badly, and it was not until all the tubes (four in total) were removed that I actually felt normal.

The second time I had the procedure I woke up in much the same condition as I did before and after the initial feelings of irritability and annoyance I decided simply to accept what was happening and there was no point letting it bother me. I kept telling myself that it would get better and the discomfort would only be temporary. Suddenly the most amazing thing happened. I slept. And not just for a couple of hours, I slept the night. I didn't even get woken by the nurse when she came to do her observations.

In the morning I felt much better. My pain levels were down, I didn't feel quite as nauseous and the irritation in my bladder had almost completely subsided. But most importantly I was relaxed, which meant that my body could concentrate on healing itself. From this point on my recovery seemed faster and easier and I was also in a far better mood, so the time passed quicker.

Please note that just because I had decided to relax and accept the fact that I had just had surgery and the discomfort was part of the process didn't mean I refrained from speaking to the nurses and other medical staff. I also adopted other strategies to relieve my discomfort, I was just much more sensible about it. I will explain what strategies worked for me next time and identify a few other discomforts that one might not expect from surgery. Until then, stay well.