Final Preps

I really feel now as though everything now is final.  I have had so many trips to see my GP in the last couple of months I have lost count.  I almost think he could retire on the amount of money I have sent his way.  But today was probably the last time I will see him until I get back from Chicago.

And just to stay true to form I stretched his mental prowess to the limit.  I went to get all my medications for my trip away, which sounds simple enough, but it isn't.  Firstly, I needed to get authority scripts for all my current medications, and we had to work out the right amount to take.

The fun part was all the drugs that had been requested from the doctors in Chicago.  You see, many of them have different names and not all the drugs are available in the same preparation that they are available in over here.  We managed to get the anti-fungal, the antibiotic and the anti-nausea all figured out, but the stumbling block was a drug called Norco.  Norco is an analgesic medication that is unavailable in Australia, so we had to go for the next best option, which was Endone.

Once we had figured all this out, we had to write a letter to all and sundry explaining all the medication and why I had it with me.  Apparently the airport security is the only place in America where it is impossible to get any form of customer service.  So not only am I not American, but I have a medical device implanted and I am carrying analgesic medication.  Fingers crossed that I am not strip searched and interrogated by the CIA.

I also had a small victory yesterday.  It was time for my six month dental check.  On my way there I remembered that I had to see a dentist in Chicago so I thought 'what the heck' and got Dr Jim to write a letter stating my exam day and that my teeth were in good condition.  I then e-Mailed Paula to ask whether this would suffice for my dental exam and whether I would need one in Chicago?  The answer was good!  This saves me money, and the more I save the better.

Lastly, I got news from Chicago that my payment had been received.  I now have all my ducks in a row for when I get there.  I have one more doctors appointment and one more treatment and then all that is left is to pack and get there.  On another note, I have always said that hospitals and medicine are not there to be the pinnacle of our lives.  Live is for living, not being sick and getting better so tonight I'm taking my son to the MCG to watch the international 20twenty match between Australia and India.  We are both very excited.  Come on Aussie!  Stay well:)

Questions are getting answered

I may be on holidays at the moment, but I have got to say that my mind is still firmly on Chicago.  Saying that, I have downed tools for a little while and got some R and R and spent some quality time with the family.  Today we went to the movies, I managed to watch a good deal of the cricket and we went out for dinner.

You might notice that my blogging frequency has been down in the last week.  But I have still been busy which is why at 11.15PM I am sitting alone, while all others are tucked up in bed, writing this.  I have been in regular contact with Chicago, and we had a small drama, the records department at North Western managed to lose my x-rays.

Don't panic, it was just the CD's, and luckily I had copies of the images saved to my laptop.  So diligently I went out and bought some blank CD's, came home and burned the images onto them.  The next day I was already to take them to the post office for the long voyage to the good ol' US of A when I got an e-Mail from Paula saying she'd managed to retrieve the images.

Phew, crisis averted.  Paula is fast earning legendary status in my book for the friendliness and efficiency she has processed my case, answered all my questions and the promptness of her responses.  However, for losing my x-rays North Western Hospital has earned itself a black mark. Ooh, that sounds bad.  Not really.  When it comes to hospitals I am a hard task master, and it is really just a reminder to myself to have my own personal file with everything in it.

All my flights and accommodation are now booked too.  I will be flying Virgin to Chicago, leaving, and arriving on the 18th of February.  Once there I will be staying at the Seneca Hotel, which by all accounts looks very nice.  I don't know for sure as I've never been, but it is the hotel the hospital recommended, so that's a good start.

The hardest part about organising travel and accommodation was the travel insurance.  Have you ever tried organising travel insurance overseas when you have not one, but two pre-existing conditions they are worried about?  Your purpose for travel is to receive medical treatment and oh yeah, your immune system is going to take a hit, and the country you are going to is the most expensive and difficult to insure?  Well, I just have and let me tell you it is a pain it the #$%&.  What is more annoying is the person that I am dealing with at the insurance company is not a doctor, nurse or any other suitable qualified medical practitioner.  They are simply an administrative coordinator, so you have to explain everything as though you were talking to a five year old.

Lastly, I have almost worked out someone to come and spend some time with me while I am going through the SCT.  I talked with someone about whether it was advisable to have a support person through the ordeal.  This person had been through an SCT and said you could do it by yourself, but it is really hard.  I have chatted with my mum and wife and aside from the first two weeks, which is just testing and appointments they will be tag teaming to keep me company.

My mind is starting to gear towards what to pack.  I leave in just over a month, and I'm sure that time will fly by.  Organising everything has not been easy, but that has been a good thing too.  Working hard to make this happen has not just affirmed my resolve that I want to do this, but I also need to do it. Leave no stone unturned.  For me the worst outcome is to never try and never know.  Until next time, stay well:)

Almost a week on.

I just read through my last post, and it does sound like big whinge, and quite frankly, it is. Complaining about wearing some inflatable boots is a whinge, but it is important to note. When one is recovering from surgery your tolerances for just about anything is really low, and many little things can all add up to a much bigger problem. The point that I am making is that it is important to research your procedure as much as possible. The more you know before you have a surgery the easier it is to cope with these things.

So how am I doing now? Aside from getting tired and sleepy at the drop of a hat I am feeling really fine. My head is itching a great deal now so I am looking forward to getting the staples removed. There is also a numb patch on the top of my head where they cut the cranial nerve but the doc says that will repair itself and it does not bother me much anyway. All other things together, when I am awake I have busied myself writing the blog and watching DVD's. I am quite relaxed as well, just waiting for a time for stage 2 of my surgery. Will let you all know when I get a time. Until then, stay well:)

Lots to think about... Part 4

Surgery affects the patient more than anyone else, no questions asked. The statement itself is so obvious it probably isn't even worthy of mention. But it does give rise to a statement that isn't nearly as obvious but still very important, and that is that surgery affects a lot of other people as well as the patient. Your friends, family, work colleagues, carers and other aquaintances can all be affected, and as a patient going through surgery it can be very easy to ignore how they feel. It is important that you don't, and the best way to ensure this is to prepare before surgery.

For me, the people that matter most are my wife and children. After my surgery, and I have been discharged from hospital, it will be my wife that will look after me. So how can I help? Well, preparation is the key. The more I can do now to get everything sorted out the better. This includes having our will updated, making sure that all bills are paid so we don't have anything to worry about when I am sick, a number of frozen meals are prepared and things are ready for me on my return from hospital. I am lucky though, m wife is great and looks after most of the things around the house anyway.

As for the kids, that is a different story. Last time I had surgery I read my kids a book called "Ben goes to Hospital", which outlines the process of going to hospital and is tailored for children. They both seemed fine and happy until the next day (the day of my surgery). My daughter was very clingy and said 'dad, I don't want you to go to hospital, you could die'. I assured her that I was not going to die, and that I had to go to hospital. The main point is they were not OK. I've since done a little research and decided that the I should be perfectly honest with them, be available to them when they want to ask questions even if it is a little inconvenient, but play it down as being routine. Kids understand more than we think, but there is know need to dwell on the negatives.

I have been overwhelmed by the number of friends and family who have shown genuine concern. I have been truly touched, and the fact that so many people care means an awful lot to me. Most people end up saying the same three things.

1. Please let me know how it goes?
2. Is there anything I can do to help?
3. I wish you all the best and hope it all goes well.

Honestly, it is nearly impossible to individually catch up with so many people but luckily for me we live in the age of social media. I will keep all my news posted here, so I have been telling everyone just to read this blog. As for there help, it is great to know so many people are willing to help but in most cases it won't be needed. Still it is very comforting to know that I do have so much support that I can count on if needed.

Lastly, me. This is a huge thing for me. With out a doubt the biggest surgery I have ever had. So what do I need. Well, I have spent a lot of time researching the procedure, as I like to know exactly what is going on. I have also got myself in a position where my business can run without me, and had my will updated. Lastly, I have taken my family on holiday, and spent a lot of time catching up with friends and family before my surgery. Once I have done this I should be ready. I hope. Until next time, stay well:)

Lots to think about... Part 3

If you are currently sick and laid up in either hospital or at home work is probably the last thing on your mind. I hear you. Really I do. When I was in hospital for my three week lay up I couldn't care tuppence about work, and I run my own business! All I wanted to do was get all the tubes out of me, get home, get better and sleep in my own bed.

However, once I was better, work came back into focus and and I had a mountain of stuff to get back to that was overdue and in urgent need of attention. I was lucky that I had some great staff doing a great job, but there was some tasks only I could do and the lack of focus I had in the aftermath and the shoddy paperwork that ensued still haunts me today.

So how can I make this surgery experience different? Well first, I have come to the realisation that I had been struggling at work for quite some time, and carrying on trying to muscle through it was doing nobody any favours and was effecting my health. So after my surgery I will be taking an indefinite period of time away from my business which will help me to get my health back on track.

However, I still need to make sure that I plan my departure properly. I have to train people up to do the jobs that I do, and put certain checks in place to make sure that the money and banking is properly administered. Once I have this the way I want it I can head off for my surgery knowing that I have everything taken care of and there will be one less stress in my life when I am recovering. Next time I will talk about getting things ready from a personal perspective. Until then, stay well:)

Lots to think about... Part 2

Bad news for sick people. It is statistically proven that if you have one serious chronic ailment, you are more likely to get a second. And yes, that includes me. I regularly see doctors, and get treated for cystinuria, CIDP, depression and essential tremor. I believe that in some way they are all linked, but none the less, they all require a different set of doctors and treatments.

Now with my up coming surgery, I am being treated for only one of these diseases (essential tremor) and during this process, this disease will not be neglected. However, the others might be. When I had my big surgery four years ago, I missed two doctors appointments and one treatment for my CIDP. This had the potential to be very counter productive and even dangerous. Doctors set your appointment schedule so they can best monitor how your disease is behaving and intervene early enough if something is wrong. Your treatment schedule is designed to achieve the best results. Luckily in my case, no permanent damage was done. But I don't want to put myself in that situation again.

So how can you prevent such a scenario? Well, firstly there is a lot you can do with the timing. I have seen or am seeing my doctors shortly so I will not have to see any of them for at least a month after the surgery. This way, I don't have to worry if things take a little longer than expected at the hospital. I have also timed my treatment for one week before the operation, so I won't need another one until three weeks afterwards.

The second thing that I can do is communicate with my doctors. If they know what is happening they can make decisions to alter my treatment if necessary. My wife is across all my doctor appointments, so if need be, she can make the arrangements. Well, next time I will talk about the importance of tieing things up at work. Until then, stay well:)

Lots to think about...

So, in 31 days time I will be spending the night in hospital, awaiting the morning of my surgery, and aside from the doctors appointments in the interim, there is a long list of things that need to be done outside of preparing for the surgery. This one really caught me out about four years ago, when I went in to hospital to have a kidney stone removed in a procedure that should have kept me out of action for a week. However, things did not go to plan, and a three day hospital stay became three weeks!

In a three month period I had 23 nights in hospital and seven operations requiring either anaesthetic or sedation. It took four months to fully physically recover, and today I think that I still carry some mental scars that I don't know if I will ever recover from. So for four months I pretty much did nothing accept recover from surgery, and whilst I did that the rest of my life stopped. Unfortunately, the world didn't, which left things undone, or others to reign in the slack. I was lucky though. I had (and still have) many good people around to help.

So, in order to avoid a repeat performance I have decided to be prepared and get as much done before the surgery as possible. Please bare with me, in the last four years I have not had a surgery that has warranted such preparation, so for me this as much a learning process as it might be for you reading this.

I have broken the areas of my life down into four areas that I believe require attention. They are:-

1. Other medical (treatments not relating to DBS)
2. Work
3. Family and self
4. Personal obligations

Just from planning my blog I have found that most things I need to worry about will fit into one of these four broad categories. Next time I will talk about what I need to do to prepare with my other medical issues, and why t is important. 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