Tragedy

It is with great sadness that today I am writing about a fellow HSCT patient that passed away recently after complications.  I did not know Gabriella.  I hadn't even talked to her but the HSCT for autoimmune diseases community is still quite small so I certainly knew of her.

However, as an HSCT patient and advocate of the procedure it raises many questions.  Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them.  Essentially we need to tackle the proverbial elephant in the room.  My points are:-

• Is the procedure safe and is it worth the risk given the potential benefit?

Personally I feel that given the evidence that we now have available it is a relatively safe procedure.  With any medical procedure, from a simple blood test to open heart surgery there is a risk.  The fact that other facilities offering the procedure have not changed their practices at all says to me that is not the case.

• Is the institution in India to blame?

Honestly I can't answer this.  I have never been to India to see the facility or meet the doctors involved. In fact I have never even researched the hospital so I can't and won't give an opinion.  However, the hospital has shut down its HSCT unit pending an investigation.  I can only think this is a good thing.  Carrying on in a cavalier fashion as if nothing had happened would be negligent. 

• Who else might be to blame?

Blame is such an ugly word.  Blame assumes that someone was at fault and that might not be the case at all.  It could very well be that all protocol was followed thoroughly and her death was nothing more than a tragedy.  I am actually going to use the word responsible as there is not an assumption of guilt on those who are responsible.  So who is responsible?

Now before you condemn me as an insensitive evil pig please read to the end as I will explain myself.  The person most responsible is the patient, in this case Gabriella.  "My Gosh" I hear you say.  "Wasn't she the victim?"  Well, yes she was.  But she was also the one who decided to go through with the procedure.  She would have known the risks and would have weighed up the pros and cons, the risks and benefits and would have made her decision.

I know this because it was the thought process that I went through before I left for Chicago.  I had weighed up all the variable and outcomes I could think of and yes.  The fact I could die did play a part. Some people thought I might be mad.  That I was gambling with my life.  I could not have thought of it more differently.  Sure, there was a choice not to have the procedure.  But that choice involved still having CIDP.  Living with pain.  An inability to move properly and a massively dysfunctional sense of feel and touch coupled with balance issues.  When this is you situation, you start to think very differently about your situation.

In a similar way to me having brain surgery, I went into my transplant with my eyes wide open.  I am sure that Gabriella did too.  I also have to say that if I did die due to my transplant I would not have wanted anyone else to be responsible.  I made the decision and I was prepared to take responsibility for whatever the outcome.  I had even prepared a series of video messages for a variety of people and one of the points I wanted to make was that I was the one responsible.  The last thing I wanted was for people to go around blaming each other for my decision.  And whilst I got the blessing to go ahead with it from close friends and family, as well as past patients who advocated strongly for the procedure, The final decision was mine and mine alone.

• Would it have stopped me having my transplant had this happened to prior to me going to Chicago?

It is a tough one to answer because I have the benefit of hindsight.  I think I would have still gone through with it.  I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.


It is never easy contracting a nasty auto immune disease like CIDP or MS.  We just have to make the best decisions that are available to us at the time.  I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was.  Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.

Stay well:)

3rd Last

3rd last what?  If it was a race of some description I would be jumping from the rafters, because 3rd last is not last.  The last time I was in a proper race was a swim, and alas, that time I came dead last.  But forgive me.  I digress, I'm not here to lament about years gone by.  Back to the subject, 3rd last.

Hopefully, all being well I will have had my 3rd last IVIG infusion EVER.  Fellow CIDPers would understand that IVIG infusions suck, so please understand my excitement at only having two more to go.  But it wasn't my best infusion day.  In fact, far from it.  After telling people exactly how I cope with my infusion day in a previous post titled My Monthly Dose of Boring, I went and did exactly the opposite.

My day started when I woke up at 8.15am.  Oops, only 45 minutes to go until I was due at the hospital.  So skip exercise, skip breakfast, quick shower and straight to the hospital.  Miraculously I made it on time, but my preparation was far less than perfect, but I did think that would be the end of it, but I was wrong.

I got to day oncology, got myself set up and then found I'd forgotten my head phones.  Understandably, I can't watch any DVD's on my computer without them because it is disrupting to the other patients.  The hospital could provide a pair, but it took two hours to get them.  Angry Birds and Pet Shop Story got a work out on my ipad, but I was looking forward to watching the movies I downloaded, but I had to wait.

So I will chalk today's IVIG up to an example of what not to do.  But I must not lose sight of what's important.  It was my 3rd last IVIG.  Next time it will be the day before I go to Chicago.  Next time I will do it better.  Stay well:)

Time Flies...

It only seems like last week when I was in for my monthly dose of boring, but time flies and time has already come around again, and thankfully I have now just finished and am sitting at home trying very hard to stay away from noisy children who act as a catylist for an IVIG headache.  Those of you who have had IVIG headaches know what I am talking about.  The neighbours lawn mower certainly does not help either.

But what I wanted to talk about today was the mental preparation prior to treatment that I seemed to neglect on my last post.  I have always found that if I go into treatment with an open mind I generally feel better upon completion.  The problem is it is hard to be positive when there are so many negatives.

If you look hard enough though, you can always find positives in nearly any situation.  To focus on them requires mental discipline, and that is the hard part.  I normally try to go swimming the morning of treatment.  This has a few benefits.  First, it gets the blood pumping so your veins are nice and plump before infusion.  Secondly, exercise and controlled breathing is quite meditative, which helps with focus.  Third, it clears the mind.

I also swim with a friend and afterwards we go for breakfast which gives me something to look forward to just prior to treatment.  But that still finishes before treatment starts, so I need another positive to focus on, and I have two.

First, although I have a negative short term response, the long term benefit is undeniable.  Since being on IVIG my rate of deterioration has been far slower, so this treatment keeps me walking, keeps me functional and allows my independence.  Second, I give myself a treat and rent a couple of movies just for me.  Nobody else around to say "I've seen that" or "I don't want to watch that".  The choice is mine and mine alone and it gives me time to do something I don't get to do often that I really enjoy.

I think that the hardest part is simply focusing on the benefits and not allowing the negatives to creep in.  For me it is simply a conscious decision to focus on the positive.  It can be hard, but it is worth it.  Remember, we can't help the way we feel, but we can help the way we think.  The way we think influences the way we feel, and the way we feel influences the way we think. If we can alter our thoughts, we can turn the tide on how we feel about a given event.  In this case for me, my treatment.  Until next time, stay well:)

My Monthly Dose of Boring

Anyone with CIDP, or any autoimmune disease that requires Intravenous Immunoglobulin (IVIG) infusions will know that there is really not that much to look forward to.  Just to let you know what it is like, you sit in one of those comfortable hospital recliners while a nurse sticks you with an IV and you sit there all day whilst watching the drip, drip, drip of the IVIG as it is slowly infused into your body over six hours.

I was hoping to write this post whilst I was in the chair, but I cannot move the hand that the IV is located in and typing with one hand is too hard.  Unfortunately, with my poor venous access and the viscosity of the IVIG, even the slightest movement sends the iMed machine into distress so the nurse has to come and fix it.

Yes, the process is boring.  Yes, it is long.  Yes, you do feel like crap afterwards and yes, that day for me is tomorrow.  I feel as if I have started this post off on a really negative note, but two things.  First, it is not all bad.  Second, there are things you can do to limit the boredom. Now there are not many people who have IVIG, but there are many people who have lengthy infusion treatments, and this should go a long way to helping them too.

Firstly, decent preparation.  I find that if I have got the body going and the heart pumping a bit before I get to the hospital.  If this is the case, I find that my veins are bigger which makes it easier for the nurse to put in the IV and less likely to have problems during the infusion.  So on IVIG mornings I like to get up and do a bit of exercise (for me, either a session with my personal trainer, or a swim.)  I like a big breakfast and lots of fluids to up the blood volume and vein size.  Lastly I pump a stress ball all the way to hospital to really get the veins up.  It is also important to stay warm so your veins don't shrink inside your arms.

Secondly, combating the boredom.  Yes, six hours of nothing is really boring, and seeing as I can't use one arm I keep myself from getting bored by watching movies.  Right now I am downloading three movies onto my computer for tomorrow.  I bet you wish you knew what they were, but I'm not telling;)
I also sleep sometimes, read a book, or talk to the other patients.

Thirdly, the nausea.  Although I have never actually been sick I have still felt nauseated.  I find a simple remedy for this is to keep snacking.  The hospital supplies a never ending supply of cheese and crackers, so I am always eating them.  I used to bring a big bag of M and M's with me but they used to only last 20 minutes plus the nurses used to eat them.

Fourthly, the headache.  Nasty headaches are a side effect of IVIG, and prevention is the best cure.  IVIG pushes up your blood volume, which increases your blood pressure.  Your body combats this by expelling water, causing dehydration.  Blood pressure plus dehydration equals headache.  To combat this, drink plenty of water, take pain relief (neurofen works best for me) and if all elso fails ask the doctor for a script of blood pressure meds, a beta blocker like inderal works best.

Lastly, a couple of general pieces of advice.  Get someone to drive you or catch a cab.  There is a good chance you won't feel like driving home. Second, be nice to the nurses.  They do a great job and do the best they can.  If you are not nice to them they will not be nice back to you.  If I feel up to it I willl let you know how it went tomorrow.  Until then, stay well:)

Doctors

Doctors. Doctors are the most important medical professionals you will deal with. They are highly talented and highly knowledgeable people who we trust to figure out what is wrong with us and more importantly, how to fix us.

However, no matter how brilliant and amazing the are, they are still human, and capable of making mistakes, and susceptible to all the same frailties as the rest of us. Often doctors are guilty of arrogance or complacency. I have been a victim of both faults in the past.

So, when it comes to doctors, there are many questions that are raised:-

1. How do I pick a doctor?
2. How can I be sure of his treatment options?
3. When should I change doctors?
4. etc. etc.

This is a massive topic and I will cover as much as I can over the next few posts. Different types of doctor require different attributes too. But for now I will leave you with three important tips when it comes to all doctors.

1. Don't be afraid of your doctor. All to often as patients we put doctors high up on a pedestal. They are not gods and should not be treated as such. They are paid handsomely for their service so don't be afraid to treat them as an equal.
2. If in doubt get a second opinion. It's your body and your health. If you have any doubt, better to be doubly sure.
3. Take charge of your own treatment. Doctors know diseases, you know you! Know yourself exactly what your problem is and what your treatment options are. You know what works best for you and you can discuss this with your doctor.

Next time I will talk about the person everything should start with. Your GP. 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:)

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:)

The Itchy and Scratchy Show

Well, it's certainly itchy, but I am not allowed to scratch my wound. To start with I still have a bandage on it, and secondly scratching it would increase the risk of infection, and seeing as though I now have two electrodes protruding deep into the centre of my brain, infections could be highly risky. This risk will not subside until the wound has completely healed over, but the doctors are very happy with the way it's healing at the moment. The most I can do to combat the itching at the moment is put pressure on the itchy spot with my hand which wouldn't feel as nice as a good scratch, but will have to do for now. The only other option is to get my wife to change the bandage, and when the antiseptic is applied the stinging is a welcome break from the itching.

They tell me that the itching is a sign that the wound is healing and will subside when the staples are removed which brings me onto a better piece of news. I have a date for my stage two procedure which will happen on Wednesday 12th May. I am actually genuinely looking forward to this as it will give me a sense of completion and also mean that I can finally have my staples out.

For those of you that are confused about stages one and two, I will explain them to you. Stage one is the initial implantation of the electrodes, including their positioning and testing. Read my post entitled 'Recovery Time" for more information. Stage two requires feeding the power wire down under the skin from my head down behind my ear, through my neck where it finishes just below my clavicle. Here the battery is inserted and connected with the wires. For more information on the device visit:

http://www.medtronic.com.au/your-health/essential-tremor/therapy/what-is-it/index.htm

So, aside from the itching I have been recovering very well. I have still been sleeping a lot, but not as much as at the beginning of the week. I am quite up beat, and hopefully by this stage next week I should be able to have the stimulator on twenty four seven. I would almost say I'm excited about the future now. With the hardest part of the procedure behind me it is hard not to be positive. Until next time, stay well:)

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.

Anxiety and Apprehension - Dealing with pre-op stress

Anyone that has had surgery knows that it is very stressful, whether it be simply having a mole removed, or open heart surgery. In the last two weeks I have had two surgeries and my thought, feelings and anxieties were vastly different for both.

The first operation that I had is clinically known as a cystoscopy with laser stone destruction. Simply put, they destroyed my kidney stone with a laser that they put up into my kidney through the urinary system and blasted it Space Invaders style. Pre-operatively, I had a number of concerns that I needed to deal with or overcome.

Personally, the main stress I had to deal with was purely psychological. Before the surgery I felt fine. I could go about my daily business normally, I had no pain or discomfort but I still had a kidney stone that would eventually cause me no end of grief if left unchecked. Unfortunately though, I found it hard to focus on the fact that I needed surgery now to avoid problems later and instead I focused on the fact that post op I would feel exhausted, in pain and in discomfort, and if I chose not to have the surgery I would feel fine. At least in the short term.

I have dealt with this previously in four ways:

1. Rational Thinking- This requires discipline, and is very effective when your mind has wondered into thinking about the negatives of surgery. Instead, I try to remind myself of the reasons why I need surgery and the potential negatives of what I might go through if I choose not to have the surgery. I find that this helps to suppress unwanted emotions and helps maintain focus.

2. Distraction- Once you have arrived at the hospital and are in the system there is a great deal of waiting around to be done. That is probably why they call us patients. During these times the mind can wander and you start to think about the negatives. I find the best way to avoid this is to keep yourself busy. Unfortunately, hospitals are very boring places, so you have to go prepared to entertain yourself. Books, magazines, portable DVD's, hand held game consoles, puzzles etc are invaluable. Take as much as you can.

3. Thinking about the Finish - If you have to think about the surgery, think about the end result, the benefits you will gain and the potential strife you will have avoided.

4. Drugs- If anxiety still gets the better of you, there is always drugs. You can ask your doctor for a pre-med, however, these days they are reluctant to give you one. Anaesthetists commonly give Medazolam (a sedative like valium) as part of the anaesthetic cocktail prior to surgery, if you are anxious enough and ask nicely they will normally give it to you earlier. My experience with the drug is that I tend to feel great. Worry and anxiety almost slip away entirely. However, one must remember that the drug is there to serve a purpose and not for messing around with.

Another stress that I had to deal with was with my kids. At four and six they were now old enough to know what was going on and they worried about whether I was going to die. Kids aren't stupid, so don't lie to them. I decided to tell them the truth and also let them know that hundreds of people have surgery every day and it is extremely rare for people to die, and those that do are normally very sick and having complicated procedures. My wife also bought a kids book on going to hospital to help explain it. We also let all the children's other care givers (teachers, other parents etc) know what was going on in case one of them became distressed and my wife or I were not around. Fortunately the kids coped very well after our initial chat.

The only problem that I had with my second surgery was really quite minor. After the first surgery my surgeon left a stent from my kidney to my bladder and for the ten days I had it I was quite uncomfortable (I'll talk about this next time). I was actually looking forward to the surgery to have it removed, but with the lack of other anxieties, I became really hungry. 8 hours fasting is fairly standard for general anaesthetics, but that doesn't stop the hunger. It really isn't that big an inconvenience, but the best ways to counter it are to have a nutritious (but not too large) meal prior to your fasting cut off, stay away from food and food smells the next day, and distract yourself.

Well I hope you enjoyed my blog. Please feel free to write to me with any comments or suggestions. Until next time, stay well and I will catch up with you then:)