Hospitals - done and dusted - Part 2

Making sure that your hospital is capable of taking the proper care of you is very important. And it comes down to two things. First, the quality of the hospital and secondly, their capabilities. I will use two examples here. The Sydney Adventist Hospital and Cotham Private.

The SAH is a big hospital. It caters for multiple disciplines of surgery and had a fully functioning emergency department (which I have never been to). There is not much that isn't done at the SAH. But the question you have to ask yourself is "do they do it well?" I feel the answer is no.

The processes are streamlined to maximise efficiency and one thing I picked up on was that the staff were disgruntled and patient welfare was sacrificed. It is what you get when a hospital is run by bureaucrats and administrators, and I would feel very uncomfortable going back there.

Cotham private is by contrast the exact opposite. It is a much smaller hospital and certainly didn't cater for all different types of surgery. However, what they did do seemed to be more than they were capable of. For small surgeries the highly skilled staff seemed very proficient, but would I want a major surgery there? The answer is no. I something went wrong I would question their ability to deal with it.

You must also make sure you will be comfortable during your stay. Especially if it is a longer stay. Surgery is traumatic and if you let it, it will effect your mental health and leave you with nothing but a miserable memory. Don't get me wrong, surgery is never fun, but if you do it right it will be an inconvenient and mildly uncomfortable event that is a good opportunity to catch up on some reading or DVD watching. Done wrong, it can feel like hell on earth.

So when you are in a hospital, make sure that you are going to be comfortable. A lot of this can be done by what you bring, but also look for the following:-

1. Nurses are kind and responsive.
2. Colour of the ward is warm and inviting.
3. You have your own bathroom.
4. You have a single room if desired.
5. The food is good.
6. You have good entertainment provided.
7. Hospital has a nice setting (good view, easy to get outside, coffee shop, etc)

Next time I will explain where you can get this information. Until then, stay well:)

Hospitals - done and dusted

Well, I have finished my review of the hospitals and right now I would like to use this post to explain what I think you should take into consideration if you need to go to hospital. Like I said at the start of the hospital reviews, you do have a choice.

Most doctors have a number of lists at more than one hospital, so you can go to anyone of them. In extreme cases you may even want to find a new surgeon. Just for an example, I could of had my brain surgery at the Alfred hospital, Royal Melbourne or as I chose, St Vincent's Private.

I had my kidney surgery at Epworth Eastern, but I could also of had it at Cotham or the Austin, there are also other hospitals I could use, but I haven't looked into them as I am very happy with Epworth Eastern.

So what should you look for in a hospital? The most important thing it that you are comfortable with the hospital you are going to, which includes two things. You must be confident that they can competently complete the surgery that you are in for and that you will be comfortable during your stay.

Everyone is different and everyone will have different priorities. For example, some people would prefer a big hospital where you are confident they can combat every eventuality, where as some prefer a small hospital where everything is more personal. You must differentiate between what is merely nice to have and what is a must for you.

Next time I will expand on what you should feel comfortable about when you have a hospital trip, until then, stay well:)

St Vincent's Private Hospital

Well, here is my last hospital review. St Vincent's Private Hospital. And it is good to end on a good note. SVPH is the last hospital that I have visited and where I had both of my brain surgeries. It is also the best hospital I have visited.

Both times I went to the ward before surgery. Tick. The OR's, pre op and post op were all great. Tick. Wards were nice. Tick. The food was brilliant. Tick. The nurses without question were all great. Tick.

Yes, as far as hospital goes this was great, but still not perfect. The ward was on the fifth floor and outside was the street, so I couldn't just get outside for nice easy walk. At Warringal Private the gardens were small, but to be able to go outside and get some fresh air in a pleasant environment which was always a welcome escape from hospital life.

It wasn't easy to get outside at SVPH let alone in a pleasant environment. However, there was a coffee shop down stairs which did provide some escapism. It does sound like I am picking on the little things a bit, and it would be impossible for SVPH to do anything about this specifically, but they could find other ways for patients to feel more comfortable.

Next time I will review all the hospitals in a recap and attempt to give some pointers to you on what one should look for when selecting a hospital. Until then, Stay well:)

Epworth Eastern

If you live in Melbourne, you probably know the Epworth for its Richmond campus. The truth is there are four Epworth campuses, the Epworth Eastern was only opened in 2005 and is very large (for a private hospital with no emergency) shiny and new.

I have had three procedures there (two kidney and my tonsillectomy) and the hospital would be a dream for any doctor or health care professional. Their processes were efficient and streamlined the equipment was new and modern and where ever I went there was so much space.

Pre-op was spacious and comfortable, the OR's were spacious and comfortable (even with a pre-op alcove to treat patients in whilst the OR was being prepped), post op was spacious and comfortable and the wards were spacious and comfortable too. Even the corridors had these benefits, but one would never have to spend time in them as there was so much room elsewhere.

Like I said, it was a dream for a health care professional to work in. But was it as good for the patient? Well, the super professional hospital has immediate and obvious benefits for the patient, but they do miss a couple of things that make a stay more comfortable.

I really think one of the cardinal sins of a hospital is not checking a patient into the ward before surgery. Epworth Eastern with its ruthless like efficiency knows the benefits to the hospital by following the procedure, however, this does neglect the patient.

Secondly, everything seemed a little too clinical. Everywhere you looked the place oozed hospital. I believe for patients to be comfortable, the place need a few homely creature comforts. Even the view from the wards was sterile, looking out over a car park, building or another hospital.

But, I have always felt very safe at Epworth Eastern, and to add to the plusses, the rooms were great, the food was also well above average, all the nurses were good and each room had a fridge in it, which was great for chilling my icypoles after my tonsillectomy.

This is a really good hospital, but they could use a patient advocate or someone just to add the finishing touches from a patient point of view. Until next time, stay well:)

More surgery on the cards.

Yes, you read it right. By years end I will have probably had to have another surgery. Funnily enough you think I would be upset or worried or annoyed. Maybe even angry, but you would be wrong. I have in the past been through all those emotions, but not now. Quite simply I just don't care.

Now don't get me wrong. I do take it seriously, but it doesn't bother me at all. I came to the realisation a long time ago that surgery would be a part of my life for a long time to come and there is no use in letting it get the better of me. There is no fixed time in the future and the surgery I am having I know very well, so I think it is just a case of not worrying about it, getting on with my life and moving forward. I can deal with the surgery when the time comes.

So why do I need surgery? I have another kidney stone. Yesterday I went to see the urologist and as he flipped up the x-ray there it was. Very small, only about 4mm x 2mm, so the urologist decided not to do anything about it now. But it will grow and the trick is to treat it before it gets too big, and it requires more than one surgery. Really it is a game to keep the surgeries to a minimum.

For now, we will just watch this space and when the stone get too big we will operate. All I can say is thank heavens for flexible ureterascopes and holmium lasers. They make the surgery much easier. Next blog I will talk about Epworth Eastern Hospital, which interestingly enough is where I will have this surgery. Until then stay well:)

Cotham Private Hospital

I'm all for space utilisation, but Cotham Private takes it to the next level. They seem to have crammed as much into as little space as possible. They have four operating theatres and only forty five beds.

I have now had three procedures here, and I was really only OK with it because they were minor operations (two lithotripsys and one stent removal). I would not go there for a larger procedure. If I had a larger procedure there I would be seriously worried, and they do them too. I just feel that if something went wrong it would take more than they had to fix it, so you would need an ambulance trip to another hospital.

So, when I got there I was sent to day surgery, which was really just a double room with curtains and four chairs so you could sit down and get changed. When my time came I was wheeled by bed to the OR where their pre-op was merely a spot in the corridor. The OR itself was fine, but when I woke up I felt like Harry Potter waking up in his cupboard. At least that is what post op felt like. The room only had room for three beds and the back wall was shelves full of medical supplies.

When I was done I was whisked back to the ward where I was put in a two person room and told I couldn't leave for two hours. The food was bad the nurses seemed grumpy and the TV's were old and only showed free to air TV.

On the good side for me, it is nice and convenient and they did lithotripsy under a general, but any procedure tougher than that I would be going elsewhere. Next time, it's off to have a look at Epworth Eastern. Until then, stay well:)

The Austin Hospital

I came to stay at the Austin Hospital in unfortunate circumstances. After two operations and over a week at Warringal Private, I had a complication with massive bleeding into my kidney. The procedure I needed could not be done at Warringal, so I was shipped off by ambulance to the Austin.

It was early morning and I had already been through the ringer and I got pushed through the bowels of the hospital on a trolley to radiology where they performed a procedure to fix the bleed in my kidney. It was one of the most horrid experiences of my life. Not only was I down a litre of blood I felt like death warmed up, and the small dungeon style area that I had to wait in felt cold and cramped. To top it all off I had none of my own belongings, and I was wearing nothing but the hospital issue gown. The only thing that identified me was my wrist band.

I felt alone and frightened and I had no idea what was going to happen next. But don't be too alarmed, the hospital is not that bad, just the circumstances in which I was there. Once my procedure had been finished I was sent to the ward. There were four beds as I was now in the public system and it showed. Everything was either good or bad and sometimes both. For example, the nurses. Some of them were brilliant, others not so. Also, I could get Foxtel! But I had to pay for it.

Once I had figured out the nurses and paid for TV I have to say that it was all pretty good. I was not bothered by being in a four bed room either, but all the guys I shared with were all very nice. The best thing however was the food which was great. The best I have ever had in a public hospital.

Overall, the hospital was very good, but you always felt like you were in a hospital, there was little homeliness. If I had the choice I would stay at Warringal. Until next time, 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:)

My story

Below is my story (medically) so far. I wrote it for the WEMOVE website, so bear in mind that it is aimed at people with movement disorders, but I think it is an entertaining and accurate account of where I have been. It is a little longer than normal, but it is a good read;)

At the young age of just 18 I must have angered the gods. I was young, had just finished school and started university. I was naive, full of dreams and my aspirations for the future were limitless. In short I was ten foot tall and bullet proof. Then I made a horrible mistake. I said these ever-fateful words to a close family friend when he showed concern about me. "I am 18 years old, I am in perfect health. I exercise regularly and eat well. What could possibly go wrong?" Well, the gods didn't like it so one week later I had my first (of many) trips to the hospital.

I hear you ask, “Why did you need to go to hospital?” Well, it actually has nothing to do with a movement disorder, but I will get to that. I had a kidney stone. The first of three I had that year. I was diagnosed with a condition known as cystinuria, which means I have to battle kidney stones regularly. Sometimes I won, mostly I lost.

In the year 2000 things got worse when I was diagnosed with a condition known as Chronic Inflammatory Demyelinating Polyneuropathy. Wow, try saying that ten times in a row quickly. I will simply refer to it as CIDP.  It was a very stressful time.  It took an eternity to diagnose, and once diagnosed nobody knew what caused it although I have a few theories.

The kidney stones were still a big problem for me, and on top of that I now had CIDP a peripheral nerve disorder which left me with weakness and slowness in my arms and legs. At the time I was trying to lead a normal life, I was not accepting of my conditions and as a result I was bitter and resentful of the ailments I had been given.

Two years later it would get even worse when I was diagnosed with essential tremor (ET). Truth be known I had actually had the tremor for since I was about 15, but it had never really bothered me. I was always able to do the things I wanted to with the minimum of fuss, but that was now changing. I found it difficult to eat, drink and write. I felt this and the CIDP the worst because it was in your face 24/7. It could not be ignored, no matter how hard I tried.

Although other things in my life were going OK, medically, I was about to embark on five years of hell. I tried a variety of treatments for CIDP and ET with limited or no success. In 2006 I had complications from kidney surgery. I was laid up in hospital for 3 weeks and over three months I had seven operations. It was the worst time of my life, but also it was turning point for me.

When it was all over I started seeing a psychologist who diagnosed me with depression, probably caused by all I had been through. I realized that I could no longer refuse to accept my conditions, and instead I decided to take charge. I learnt about the conditions and treatment options and where applicable I changed doctors or even found some new ones. For example I now consult with two neurologists and two urologists, not one. I also changed my nephrologist (Kidney specialist) completely.

I also took time to work on my mental health and let myself know that what I had really did suck and it wasn’t fair. The validation of that point has really been a godsend for me. Now, I no longer live in denial about it all. I am not cured of my problems, but now I am accepting of my limitations and I am much more in control of my conditions. Recently I just had DBS to help with the tremor which has been great, but I know there is still a long way to go. I have blogged about my experiences as well. They are at shakesandstones.blogspot.com. Thank you all for taking the time to read, take care and stay wellJ

Onwards and Upwards - Part 3

My final two doctors visits were to the neuro surgeon and the neurologist. The surgeons visit was a fairly routine post op visit. He just wanted to see the stimulator in action and check there were no complications, which luckily, there weren't. I also got the green light to exercise, swim, drive and fly! I have my freedom back which one does not respect until it is taken away. I see him again in twelve months.

The other visit, which was to the neurologist was far more entertaining. Finally, I think I have broken the back of my programming conundrum! This has been a great step forward to me as the last six weeks have been rather frustrating and my impatience was growing. Now, not only do I have a the opportunity to vary my setting a little around where the doctor feels I have the best benefit, I have two completely different settings.

They are labelled A and B. A, gives me the maximum tremor control I can hope for, but along with that comes the lack of co-ordination, slowness and unsteadiness that I have had great issues with. So when I am sitting down, eating, drinking or writing etc, it is the setting of choice.

On setting B I have only limited tremor control, but the co-ordination problems are almost non-existent so I can pretty much do everything that I could before with just a little less tremor. This is great for when I'm up and about like cooking in the kitchen, driving or at the shops.

After this setting adjustment I finally have felt like the whole process of the surgery has definitely been worth it. I feel as though I have a better quality of life, and although there will be other setting adjustments to come, the back has been broken, so look out world here I come!

Next time it will be back to the hospital reviews. Until then, stay well:)

Onwards and Upwards - Part 2

I had another first last week where I went to the rehab clinic for the first time. No, this wasn't the Betty Ford clinic or anything, this rehab clinic was mainly for the elderly, car accident victims, stroke victims etc.

The first person I talked to was the physiotherapist. This was mainly an assessment of my current capabilities. I did some strength tests (pushing against the physio in a certain direction) and some balance tests (stand on one leg and close your eyes). They also observed me walking. I must be quite a hard case for them as my capabilities change depending on the stimulator.

Next, I saw the occupational therapist. Again, this was an assessment of my current capabilities but this was less physical and more simple questioning, where she tried to figure out tasks that were difficult for me so we can develop strategies to make them easier.

The next step will be for the physio and the OT to develop a plan that will assist me in combating my balance issues and developing strategies to assist me in making everyday tasks easier. I will know more tomorrow when I go back for what is my first treatment. I'll let you all know how it goes.

Next time I'll talk about my final two doctors visits, which includes a really awesome stimulator adjustment setting. Until then, stay well:)