Onwards and Upwards

Well, a lot has happened in the last week. I have had six doctors appointments in the last seven days all of which have been noteworthy in their own right, so I'll probably talk about them over a couple of posts. Apologies for not talking about the hospitals for now as promised, but this is interesting. So what are the six doctors appointments?

Well, there was the GP, then the nephrologist, the physio, the occupational therapist, the neurologist and finally the neuro surgeon. So where do I start. In no particular order I will start with the GP. After years of resisting the temptation to get a disabled parking permit (which I have been eligible because of my CIDP for 10 years) I decided that now was the time.

I do think that it is a really contentious issue this. Ten years ago I could have got one but did I need it and the answer was definitely no. I went another ten years without and I didn't miss or need it. However, now I feel there are times where I do need it. For example, when I have the kids in the car. They can be quick and out on the road before I have time to do anything because they are faster than me. If I am in a disabled spot their destination is closer and they are much less likely to run on the road.

It really comes down to the individual to use their common sense when they should and shouldn't use it. Rest assured I will only use it when I think necessary as it is not a privilege to be abused.

I also went to see the nephrologist. This won't take long. The visit was standard. My tests were normal and he didn't change my kidney pills. So I'll see him in another six months.

Next time I'll talk about my other visits. Until then, stay well:)

Hospitals recap

I have had some criticism that this is a boring topic area. Point taken, it is probably not as interesting as the photos of my brain surgery, but in my defence, the brain surgery is over and I can't see myself back in hospital for a while.

Secondly, I have a point that I am trying to make here, and by explaining where I have been and the experiences I have had in each hospital will make it easier for people to understand what I believe one should look for when deciding which hospital to choose and why.

Anyway, I do see the point, so for now I will only review the hospitals I have had surgery at, which by my calculations means I have five left to review. I will try to make them as entertaining as possible.

Lastly, please feel free to provide feedback online. The feedback I have received has all been via mouth. If you provide feedback online it will be much easier for me to respond to it. I'll be nice, I promise:)

Until next time, stay well:)

Royal North Shore Private Hospital

After my experiences at the SAH I thought all hospitals in Sydney were rubbish. Luckily, Royal North Shore Private proved me wrong. Unfortunately the longest I ever stayed in this hospital was one night with longer surgeries I always went to the SAH.

The first thing that struck me about this hospital was the fact it was warm and comforting and really didn't feel that clinical at all. Each time I went there (which was about three times in total) I was processed through day surgery. I generally disagree with the policy of putting patients into day surgery first, but here it seemed better.

Each day surgery cubicle had solid wall partitions and a TV. Another welcome change was the external windows. It is amazing what a little natural light can do for your well being. Still, if I am going to be in hospital overnight I prefer to go to the ward first.

From what I remember as well, the OR's seemed nice and clean and all the staff were friendly too. Everything also seemed nice and close, so it was easy to familiarise ones self with the hospital. Feelings of unfamiliarity are common in hospitals and very unwelcoming, to have these addressed is a big step.

Lastly, the wards were all single bed and spacious, there was good entertainment, and the food was good too. Overall, a good hospital experience. Next time I will move south of the border and review Warringal Private in Victoria. Until then, stay well:)

Sydney Adventist Hospital - part 2

OK, if you are going to hospital for an operation you expect an operation right? Wrong! Not at the SAH. I got there at 7.00 am to dutifully and patiently await my surgery. At 10.30 am I was processed through day surgery like a sheep going for vaccination. They had no day surgery bays left so I was stuck in a converted broom closet where the TV was yet to be connected.

Here I waited patiently, like a good patient. At 1.00 pm, for lack of a call button, I started to roam the corridors of day surgery to find an answer. Here I was greeted with the questions "Why are you out of bed?" and "Why did you not press your call button?" Well, nobody had come to see me, my surgeons list had finished half an hour ago and I don't have a call button, but sorry for thinking you might actually like to look after your patients.

I got told an answer that my surgeon was running late and just to wait patiently. So I did. Until at 3.00 pm I saw my surgeon who was supposed to be in the OR. I called to him and he asked me what I was still doing here? Apparently my surgery had been cancelled due to a complication upstairs with another patient and my operating room time was pushed.

Yeah right. If my surgeons OR time was pushed why was he still there at three o'clock? And how can a hospital with twelve OR's not find room for a surgeon with a regular morning list. Sorry SAH, I don't buy it. SO my surgery was cancelled and I hadn't eaten for over 18 hours and all they could manage was a cheap sorry, a poorly prepared selection of sandwiches, a juice box and they couldn't even pay for my trip home.

Eventually, I had my op and the hospital luckily didn't kill me. But it was a miserable, de-humanising experience. I didn't get to go to the ward until after my surgery, so I had no idea of where I was, the place was dull and grey, the food was lousy and the nurses were rude and either inexperienced or slouches. A sure 0/10.

Next time a much better experience at North Shore Private. Until then, stay well:)

Colds and Tests

Since the last time I blogged about my DBS a few things have happened. First, I went and played patient to a few wanna be neurologists who were being examined, second, I had another adjustment of my stimulator, and third, I have had the cold from hell.

First, the medical exams... The truth is they are not fun. I let a bunch of strangers do a medical exam on me which include scraping the bottom of my feet with a stick and sticking me with pins. So, why do I do it? It is a chance for me to give something back, and if examining me can make me these people better doctors, it can only help me in the future. If you decide to do one of these training days, don't worry either. This is the fourth time I have done one, and I have been diagnosed from everything from Parkinson's to Motor Neurone Disease. This time I was the star attraction with my new DBS as no one had seen one before.

As for the adjustments, I felt this time Mary worked very hard to find a better setting, which was somewhat in vain as Richard came in fifteen minutes later and gave me an entirely new setting. They called it the bi-polar setting. The charge, instead of just emanating outwards, is attracted to the lead directly above, so the charge radius is much smaller. This means that a much higher charge is possible. Currently I am set to 5.2 on the left (bi-polar) and 3.2 on the right (normal). I have had a sleight improvement on last week, but the side effects are worse and the adjustment to them takes longer.

Overall, I guess that I am happy with the way things are progressing, I just wish I had more control over the process so I could figure out the best setting for myself rather than having to wait three weeks in between adjustments.

However, last week I did have a scare that made me question the validity of the whole process. Yes, that was my nasty cold. Everything was worse. I actually felt worse than before I had the surgery and I started to question whether everything was worth it, and even had I made things worse with my decision.

Now normally I don't let a cold affect me, and the sniffles etc. didn't really bother me. But the increasing tremor really did, especially after such a life defining surgery. I wish I could give you some tips on how to cope with this, but I can't. I coped badly. I leaned heavily on my wife, did not feel like doing anything but sit on the couch and feel sorry for myself. Next time I have a cold with similar side effects I will give you some tips on how to cope.

Fortunately, I am through the worst of it and I am feeling better and luckily, my tremor has improved (I drank the second half of a cup of tea today with one hand). Next time I will get back to my hospital reviews. Until then, stay well:)

Sydney Adventist Hospital

To get me to go back here you would have to pay me an obscene amount of money. I have so much to say about this hospital it will be at least two posts and none of it good. So, I'll start with my horror stories.

I have two of them. The first was when I was booked in for a routine lithotripsy (shock waves sent through your body to break down kidney stones). At Warners Bay I used to get a general anaesthetic for this surgery and when I did, I normally woke up feeling groggy but otherwise OK and the need for pain killers was rare post-op. At the SAH they used to sedate you and give you a massive hit of pethidine for the pain, which you needed because it hurt like hell.

When I had this they came to get me from the day surgery ward and as of yet, they hadn't given me the sedative or the pethidine. So they hurriedly gave me the drugs and told me that it would take a long time to get to the lithotripsy room and the drugs would kick in on the way.

Two minutes later the drugs hadn't kicked in and I was served up on the table with what felt like someone kicking me in the back. After another five minutes the drugs had kicked in but the damage was done. Between the pain and the drugs I was spent and little did I know I was only halfway through my nightmare.

When I returned to the day surgery ward I asked for more painkillers. They said I was not allowed any more pethidine and so all I could have was panadol or panadeine forte. Now panadol would not touch the sided so I opted for the panadeine. One problem, I am allergic to codeine, the active ingredient in panadeine, and I had a red wrist tag that told people of this, but the nurse just went ahead and gave it to me anyway.

Right now I am feeling like crap. I am so wired I can't even walk and I feel nauseous because of the panadeine and they want me out of there so they can close down day surgery, so they wheel me out in a wheel chair where my then girlfriend is ready to drive me home in my new BMW. We get out the front of the hospital and I vomit all over the inside of my shiny new car.

Yes, I hate the Sydney Adventist hospital and yes, I learnt a valuable lesson that day.

Next time I will finish off my tales of the Sydney Adventist Hospital. Until then, stay well:)

Warners Bay Private

When I first was diagnosed with my kidney problem my urologist at the time wanted me to go to Warners Bay Private for two reasons. First, he had a regular weekly list there and second, it was the only hospital in Newcastle with a lithotripsy machine.

I was lucky. Warners Bay was a good hospital, but before you run off there keep in mind that the last time I was admitted was 1998, and if you are thinking about surgery I recommend you do your own research.

So, why was I lucky. I first went to this hospital in 1994 and back then I simply trusted the system and my doctor to make the right decisions. Now I was slightly restricted in my decision because at the time lithotripsy was the best surgical treatment for me, but I also had a few other surgeries and I could have chosen to have those elsewhere. If that were me now I would certainly do some research to find out what my options were.

Anyway, why was Warners Bay a good hospital. First, the day surgery unit was only for day surgery patients. If I was admitted over night they would send me to the ward first so I could settle in. Second, food and entertainment were good, but most importantly, back then the staff were excellent. I was also possible to go for a walk in the gardens outside.

On the downside, they had one two and four bed wards and what you got was a lottery and the wards were simply along the main corridor so it was always quite noisy and you had a lot of sticky beaking in your room.

Stay tuned for the next edition of ShakesandStones where I will critique the Sydney Adventist Hospital which is by far and away the worst hospital I have ever been to. I will explain next time, so it should make for an entertaining read. Until then, stay well:)

Which Hospital?

Public or private, big or small, I have been to a lot of hospitals. Excluding hospitals I have attended emergency at or merely consulted a doctor at, I have been treated at no less than twelve different hospitals. I have listed them at the bottom of this post and next time I will rate them for you outlining all their pros and cons.

Now if you have the unfortunate need for a hospital, you might think you have no choice on where you go, but you do. Admittedly, if you have found a surgeon you like and are happy with it is hard to go against his choice, but most doctors treat patients at a number of hospitals and normally you will be able to choose any of them. Of course, there might be other factors involved, like the hospital having the right set up and equipment for your procedure.

When looking for a hospital there are a number of factors you should think of, but I will cover these off next time. Until then stay well:)

Oh yeah, my list of hospitals:-

1. Warners Bay Private Hospital, Newcastle NSW.
2. Sydney Adventist Hospital, Sydney NSW.
3. Royal North Shore Private Hospital, Sydney NSW.
4. St Vincent's Hospital, Sydney NSW.
5. St Vincent's Public Hospital, Melbourne VIC.
6. Warringal Private Hospital, Melbourne VIC.
7. Cotham Private Hospital, Melbourne VIC.
8. Austin Hospital, Melbourne VIC.
9. Austin Repat Hospital, Melbourne VIC.
10. Epworth Eastern Hospital, Melbourne VIC.
11. Cabrini Hospital, Melbourne VIC.
12. St Vincent's Private Hospital, Melbourne VIC.