2011 in Review

Given all I've been through in my life, 2011 might have seemed like a fairly light year from a medical stand point.  I mean if you think about it, the year before I had brain surgery and next year I will hopefully be having a stem cell transplant.  From the outside looking in this year has paled in comparison.

But when you are inside, you do not necessarily see everything but you sure feel it.  And honestly, I think that one thing makes 2011 a massive year for me.  It is the year I feel I conquered my depression.  Five years ago, the best I could possibly feel was numb, at worst, there would be a whole cocktail of negative emotions.  Anger, sadness, helplessness to name but a few.

Now I am experiencing a whole range of emotions.  I still feel the negative ones sometimes, but that is OK.  Part of being human is to feel negative emotions from time to time, but I also feel the good ones.  I feel the positives in life, and as a result I actually look forward to and enjoy so much more.  I am constantly having ideas and the drive to put them in to practice.  If I was still depressed I would never have got off my derriere, found support groups for my conditions, found out about SCT and got myself on the trial.

Although I have won the war, I have to be aware that the demon is not slain and vanquished never to return.  He is merely locked away in a deep dark dungeon.  Escape is possible, and although at this current time unlikely, I still have to be constantly vigilant and aware.

So what else happened in this 'light' year?  There were 13 admissions to the day oncology ward at Cabrini hospital to receive IVIG, 2 hospitalisations for kidney stones at Epworth Eastern and Cotham Private, 1 trip to Box Hill Emergency (for a cut finger of all things, see I'm a Clutz!!!!!) and countless trips to various doctors and x-rays, CT scans, ultrasounds, blood and urinalysis and other fun tests.  Mixed in with this were a bunch of other stuff like physio, chiro, occupational therapist, PT and yoga lessons.  And who said being sick wasn't a full time job?

So last year for me was not 'light'.  But when it comes to my health I don't think such a thing can exist.  I have made mistakes in the past and have learnt the hard way to take my health very seriously.  I only have one body, one mind and one life.  This is not a dress rehearsal, and as long as I have these diseases, I will spend as much time as it takes working out how to beat them.  I believe that it is possible because I beat my depression.  I believe that the endeavour is worth it.  I believe I'm worth it.


Well, that is my year that was.  Next time I will write about the year that is.  What I can expect.  What I want to achieve and what could go wrong.  Until then, stay well:)

About Dr Google

I was talking to a doctor friend of mine today, who has been reading my blog.  He said he enjoyed reading it, but he did make a couple of really good points.  First he said that I had given doctors a bit of a bad rap recently.  And you know what, he is right, so I apologise to those sensitive doctors who have taken my blog personally.

Second, was the message that he thought people might read into by the post "Dr Google", a dangerous message.  And he was bang on right to make the point he did.  He suspected that people might think that I am trying to say that one should not bother with your doctor and just self diagnose on the internet. Personally I think that that is a really bad idea.

Please understand that I think it is really important to research your symptoms, diagnosis and treatment options from as many sources as possible.  But the most important one is your doctor.  Doctors have studied for a very long time and are very knowledgeable, especially in their own specialised field.  They should be your first port of call.  After you have seen them you can go home and research their diagnosis and recommended treatment options.  If you disagree with your doctor you can go back to them and raise your concerns, or you can ask for a second opinion.


The point I am always trying to enforce is that you should not just blindly follow your doctor's advice.  You need to listen to them, then go home and research and understand the diagnosis and treatment options.  It is taking charge of your health.  Sometimes even good doctors get it wrong, and if they do, wouldn't you like to be in a position to question them about it?


The following link is an article outlining the dangers of self diagnosis.


BUPA warns of dangers of self diagnosis

However, far be it for me to write a blog like this without having at least a tiny little dig at the medical fraternity.  If you want to stop people self diagnosing.  Don't just tell us to stop but do something about it! First, you could start treating patients as rational, intelligent human beings instead of uneducated, brain dead morons.  Second, doctors could start seeing patients within a week and not three months.  Until next time, stay well:)

If I'm Glowing, Just Turn me Off.

In the last two weeks I have had a head CT, a sinus CT, a chest x-ray and a KUB (Kidneys Ureter and Bladder.)  After being exposed to all that radiation I wouldn't be surprised if I glow in the dark!  But I'm hoping it will not be in vain.  After all, we don't do these things because they are easy, we do them because they are worth it.

I guess I do have a point to make.  All things being equal, even when you are pretty good having a chronic disease is still pretty time consuming, let alone two.  I have had a pretty busy couple of weeks and it's not letting up just yet.  To let you know as well as the x-rays above I have also had 4 appointments with specialists, 3 GP appointments, 2 physio appointments, an ECG and an echocardiogram.  And left for this week is a 1 physio appointment, my IVIG treatment, 1 specialist appointment, a pulmonary function analysis, all the blood work and urine analysis I talked about last week and a 24 hour urine test for my nephrologist.

Now it might sound like I am having a bit of a whinge, but I'm trying to illustrate my point.  At the moment I am pretty well.  I recently had a flare up of my CIDP, but aside from that my depression symptoms have never been better, my tremor is under control and I am asymptomatic with my kidney stones and according to my x-ray I am stone free.

I understand that a few of these items are to do with me trying to get on the trial in Chicago, but if it's not that it's something else.  So spare a thought for the chronically ill.  Try doing a full time job with all that going on.  On top of that, there is living with your disease that is also tiring.  And all the other inconveniences.  Remember your pills, what you can eat, what you can't eat, what you can and can't drink, exercises etc.....  Oh yeah, then there is also all the research into your symptoms, disease(s), treatments, side effects etc.....

Living like this is a full time job.  It's exhausting and tiring.  And I think I talk for all patients when I say this.  We didn't ask for are disease, yet we have no choice but to deal with it.  And I have to say that most patients I have had the pleasure of talking to are very brave and resilient.  But patients are  people too, and just like all people they have bad days and bad moods.  So if we seem irritable, lethargic, grumpy or just generally pissed off, cut us some slack.  We don't mean it and we are dealing with a lot.  Until next time, stay well:)

More on stem cells

Yeah, I get it.  It's a PR movie for adult autologous stem cell transplantation.  I've worked in advertising for a long time, so I know all about it, but as a potential recipient of an SCT I have to say I am very excited.

Stem Cell Transplant

About three weeks ago I mentioned the possibility of having an adult autologous stem cell transplant,  Since then I have been researching it thoroughly and I'm amazed not more has been done to promote this treatment further.  Doctors do not like to use the word cured, but to all intents and purposes people with auto immune diseases have been "cured".

Below are two links to trials of stem cell transplants for people who have had an auto immune disease.

Systemic Sclerosis
Lupus

The results are amazing.  Everyone treated with stem cells showed improvement.  Generally, auto immune diseases are degenerative, so to see improvement in 100% of patients is wonderful achievement.  In terms of CIDP, I have read many blogs and accounts of people who have had the procedure, and all have reported improvement, some have even said they are cured.

So, what is the catch?  First, it is dangerous.  In order for the stem cells to take a patient has to be completely neutropenic (no immune system at all).  This is achieved with high dose chemotherapy.  With a weakened body due to chemo and no immune system, one is highly susceptible to infection.

Second, it is expensive.  In order for me to have the treatment I have to pay about $150,000 to $200,000.  This is a problem that means that a number of people cannot have the procedure simply because they can't afford it.

However, the more I think about it the more I think that it is the only option.  If I can get accepted into the trial I will find the money to go.  To me it is a no brainer.  If I had to live with this disease I could, but if I don't have to I won't, and I am prepared to take big risks to achieve that.  Stay well:)

Medicines Holiday Crunch

There are a few blogs I follow, one of them is called DrWes, written by American cardiologist Westby G Fisher.  Many of his posts, including his last one, raise some extremely relevant issues.  His last post was entitled "Medicines Holiday Crunch" and draws attention to the rush prior to Christmas and the stress it puts on hospitals, doctors, etc.

It inspired me to respond to it with my own suggestions, which I am sharing with you all today.  You can also read it on Dr Wes's blog.  May I suggest you read his original post first.  The link is below.  Stay well:)

Dr Wes - Medicines Holiday Crunch

Hi Dr Wes,

I couldn't agree more. However, it does beg the questions of what can be done about this? I have a few suggestions. 

First, what can the hospitals do?

1. A massive overhaul of their regulations and procedures. Cut out the needless regulations and inevitable double ups. This may be costly so let me put it in a context bureaucrat would understand:

Regulations + Paperwork = Time = Money

Therefore streamlining regulations would save money.

2. Take pressure off the doctors and nurses. A great deal of non-essential tasks are delegated to these people. Some of these tasks could be delegated elsewhere, leaving the doctors and nurses to do what they do best, medicine.

3. Add incentives for staff not to take holidays during the lead up to Christmas.

What can the government do?

4. Write legislation to streamline government regulations.

5. Align the medical year with the financial year. This will move the financial incentive to have surgery pre Christmas to a more manageable time of year.

What can the patient do?

6. Be aware of the Christmas log jam and elect to have your procedures outside of this time.

7. Take charge of your own treatment. Many accidents happen and are blamed on hospitals, doctors etc, but could have been prevented by the patient. As a patient, pre surgery I like to have a short 30 second conversation with my surgeon just to make sure he has bought his 'A' game. For a number of reasons (tired, stressed, emotional, ill, hung over.....) they might be off their game and I would have no hesitation in postponing the surgery. This has never happened to me with a surgeon, but one I did have a scrub nurse who had just broken up with her boy friend and was an emotional mess. I told the surgeon I didn't want her in the OR and they removed her without any fuss. If I had said nothing she would have played a part in my surgery and who knows what mistakes she would hjave made.

What can the doctors do.

8. I actually think nothing, it is up to the system to allow them to do what they do best. If anything they should be making sure they are allowed to.

Your GP

Some people say they are the Jack of all trades and a master of none. Personally I think that couldn't be further from the truth. A GP needs to have a unique skill that other doctors do not have, and that is they must understand and treat the patient not just the illness. Many specialists ignore a patients general health and quality of life and focus on purely on what they are trained to treat. Sometimes this is a good thing but it can also be a bad thing.

So, how do you pick your GP? In Australia, a GP is virtually the only doctor that you have complete autonomy in picking yourself. Which makes it a very important choice. Myself, I am a big fan of the local family doctor. Here is a list of what I look for in a doctor.

1. Find a doctor that understands you. I believe that you should have one doctor that knows you very well, so they can decide what treatment is best for you, and make sure that if you need to see a specialist, he finds one that will suit you.

2. Proximity. You don't want to travel for ages every time you have a minor ailment, so find someone near.

3. Longevity. For whatever reason, a doctor may stop being able to treat you, so it is important that you find a doctor that will be around for a while as continuity of treatment means quality of treatment. I had five GP's in five years once and it drove me mad! I had to change due to retirement, maternity leave, changed practices, moved away and the fifth I finally managed to keep.

4. Know their limitations. Some GP's want to cure the world. When I lived in Sydney and I first started getting peripheral neuropathy my GP wasted a month sending me to get needless tests before he eventually gave up and sent me to see a specialist who gave me a preliminary diagnosis on my first visit. From there, treatment could start. My point is that I wasted a month while my GP tried to figure out what was wrong with me when he should have known my condition was beyond him and referred me straight away.

5. Willing to Learn. You can't expect your GP to know everything, but your GP should be willing to learn about what a specialist says is wrong with you, so they can understand and add a second opinion to your treatment options. When I first raised the possibility of having DBS with my current GP he knew nothing about it. But when I went and saw him a week later, he had done his homework and he could discuss the surgery with me openly. He also understood how this would impact me going forward so he could provide the best possible health care.

6. A good practice. Doctors also get sick, go away on conferences and take holidays. My point is that you might be able to wait for a flu jab, but if you have tonsillitis you don't want to wait a week for treatment, you want someone now. It is a good idea to go to the same practice where they have all your records on file. Make sure you are happy with the practice and the other doctors that work there.

These are my criteria for a doctor. You must also think about what you want. For example, some may prefer a male or female doctor, or a doctor that speaks your native language. It is a good idea to figure out what you want.

Next blog, I will write a little message for Julia Gillard to tell her what she is doing well and badly. As a frequent user of the health care system I would like to give you my two cents. Until then, stay well:)