A surprising consultation

If you read my post titled "Welcome to purgatory" last year, you would have realised that I had a less than happy consultation with my neurologist.  To cut a long story short I felt like I was ignored and my neurologist was so anti the idea of a stem cell transplant that she wasn't going to help.  From here I ended up getting all the information for a stem cell transplant together by myself and sending it off to Chicago.  Looking back maybe I was a little hot headed and I could have been a little more diplomatic about the situation but what I did got me the treatment as soon as possible, so I'm glad I did it.

So last week I when I went back to see her I expected one of two things.  First, she would have a real go at me and refuse to treat me, in which case I was prepared for a huge argument or second for her to be super clinical, do the consultation and send me on my way.  I had a plan for this scenario too.  But what she did really took me by surprise.

So what did she do?  She was really complimentary of my tenacity and decision to go and get the procedure done.  I certainly hadn't prepared for that eventuality so I didn't really know how to take it.  We had a good chat and I think she was genuinely intrigued and looking forward to seeing the improvement.

However, it is always hard to get a read on doctors.  They hide their emotions away so I found it hard to get a read on her body language or the tone of her voice so I couldn't really know if she was just saying the words or actually meant it.  Personally I'd like to think she meant it and I believe it to be the truth.  She was very keen to get all my Chicago notes and looking forward to getting the results of my next nerve conduction test in September, which will be the topic of my next blog.

Although I ironically felt under prepared for the consultation as it didn't take any of the avenues I had envisaged, I was buoyed by the meeting.  So far the follow up care in Australia has been great from all the doctors I have seen, and I hope that my experience can assist the medical fraternity here in Australia to accept the benefits of stem cell transplants for AID's.  Until next time, stay well:)

It's cold today

If my kids were here today they would have gone nuts!  When I woke up this morning and looked out of the window it was snowing.  The last time that I saw real snow was back in 2002.  My wife and I were on our honeymoon and we went to Niagara Falls on a bus tour.  When we woke up in the morning there was a light dusting of snow on the ground and for some reason the tour guide was extremely apologetic about the awful weather.  I don't think she really understood that the majority of Aussie tourists on the bus rarely saw snow and we were all running around outside like kids in a toy store having a great time.

I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing.  However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.

Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors.  It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests.  The bottle they provided here was so much easier to use and it didn't leak either.  The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.

After the drop off, it was time to see Dr Allen, the neurologist.  Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals.  Still everyone was extremely nice, something some service orientated staff in Australia could learn.  After that it was time to see the doctor.

He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT.  He really wanted to find out two things for Dr Burt.  First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary.  After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.

We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse.  Unfortunate, but understandable.  I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks.  Anything more than that is a bonus.

Well, that is about it for me today, until next time, stay well:)

Last doctor appointment

Well today I saw my new neurologist today and it was quite a welcome visit.  After seeing the last one and not getting the answers I was after this really felt like a breath of fresh air. As it was the first time I'd seen him he did give me the full work down.  I had to give him a full medical history and then it was onto the bed for a full medical exam.  Strength tests reflexes etc...

After it was all over we then got into the nitty gritty of whether or not I would qualify for the stem cell transplant.  We started by talking about what was involved with the stem cell treatment.  I fairly sure that he wanted to get an idea of how well informed I was about the whole procedure.  I think he was fairly impressed with my knowledge of the subject because we didn't talk about it for long.

He then wanted to question me about what I was getting myself into, and whether I understood what was involved.  I am no stranger to major medical procedures, so this one was not much of a problem for me either.  You might ask whether I was a little annoyed by his lines of questioning?  No.  I was a new patient who he had never met before.  He need to be thorough and he was.  I would have been more concerned if he wasn't.  However, after a relationship has been forged and we understand each other a little better, one can expect a little more brevity.

So what did he tell me at the end?  He thought I would comfortably qualify for the SCT.  Unfortunately a little late  to help me with all the tests I needed to do, but it was still very reassuring to know he thinks I would be accepted.  Until next time, stay well:)

Calm Down.

I have just read through my last couple of posts and although I wouldn't change them because that is how I felt at the time and for the most part still feel now.  However, I did take a big swipe at my doctor and doctors in general, and I do think that was a little harsh.

When it comes to my neurologist I have no doubt that every decision she makes, she makes in the best interest of her patient.  But I don't think she really understand how much time I have spent researching this, how much time I have spent thinking about this.  I know it is a long hard process.  I know I might come out worse than when I went in.  I know it might not work.  I know I might even die.

I know the statistics.  I know all about the procedure and yet I still want to do it, and I think that should be my choice to make.  After all, I could go and do many stupid and dangerous things if I wanted to and not need sign off by anyone.  I could go base jumping, swim with hungry sharks or play chicken with a brown snake.  If I wanted to be really stupid and dangerous I could even start an argument with my wife;)

My point is that for everything dangerous there is normally a reward or potential of reward.  And normally there is no one there to stop you.  So my point is if I am informed and willing, why can't I?  Stay well:

A new day

Yes today is a new day.  And after a swim and a hearty breakfast I feel ready to take on the world!  Yesterday was a bad day, but today I am revitalised and rejuvenated.  So kids, buckle up and fasten your seat belts because next the next bout in our entertaining series is:

ANDREW PRICE Vs. MEDICINE (round 4658)

And it got off to a flyer with a referral to the new neurologist in hand by 9.00am.  Faxed new referral to new neurologist and called for an appointment.  CRASH!  All referrals need to be reviewed by the doctor before appointments can be made.  Well never mind, the poor receptionist is going to hear from me every day until I have an appointment.

On the brighter side, yes, I didn't get very good news about my health, but I got great news from the other side of the world.  I became an uncle!  My brother had his first child yesterday and I am really happy for them all.  Mum and bub both doing well.  Welcome to the world little Johnny, I'm really looking forward to meeting you.

Where to from here?

I just got a message asking me if I was going to be OK and what am I going to do?  Well, I have to say that I'm still a little angry.  Especially when I read that the first SCT was done on a non-cancer patient in 1968, and it has taken them over 30 years to look at doing this for auto-immune diseases.  So why so long?  There is no money in the cured, but there is in the living sick.  If the research had been pioneered twenty years ago, we might already be done with the trials and moved on to a working treatment by now.

Anyway, I digress and I sound really bitter.  But I will be OK, and where to from here?  Well first I will employ what I call the Tiger Woods ten steps technique.  No, get your mind out the gutter.  I'm not referring to his sex addiction.   The late Earl Woods told Tiger that if he played a bad shot he was allowed to be angry for ten steps.  After then he had to get it back together and focus on his next shot.

For me, it is OK for me to be upset.  But I'll give myself until the end of the day to be like then, and tomorrow I'll refocus and reengage.  As for tomorrow?  Well, I haven't been told no.  This is more of a speed bump.  And what could I expect really?  A ticket to Chicago and an all expenses stay at North Western hospital?  Not quite.

So tomorrow, my first steps will be to contact North Western and let them know the state of play and then go and see my GP for a referral to the new neurologist so I can get in before Christmas. Aside from that I will keep reminding myself I am strong, I am resilient and I will find a way.  Until next time, stay well:)

I Feel Like I'm in Purgatory.

Sometimes I feel for all their knowledge, doctors don't get one very important fact.  How the patient really feels.  My doctor did entertain the fact that I did want to actively explore the option of a stem cell transplant, BUT, why do feel like I am getting the medical ring around.  She raised genuine concerns which is fair enough, but I like to think that I am an educated, well informed and rational person and I should be able to make my own decisions.

I get that there is a chance of mortality.  I get that there is a chance of morbidity.  I get that it might not work.  But I am still willing to try, and if it doesn't work, at least I'll know, and at least I will have tried.  Waiting, doing nothing makes me feel like I'm in purgatory, not going up, not going down.  Unknown, undecided.

All I know is right now I have to live with this disease all day every day.  It does not take a holiday, it doesn't even take a tea break, and this is what doctors don't understand.  They see you for 15 minutes every six months and then it is on to the next patient, meanwhile we the sick, fight and struggle through our everyday lives.

The other problem I may have is that, get this, "I may not be sick enough".  Seriously, I don't understand. I compared my nerve conduction studies to a patient that underwent SCT and has results published.  They are strikingly similar.  I do my very best to stay active and exercise in order to maintain my muscle mass and retain my ability to function independently.

Just so you know I swim twice a week, train with a PT who works on my balance and co-ordination as well as fitness and I practice yoga.  It is a fine line though.  Too much exercise and I cramp up and can barely walk, not enough and my muscles start atrophying.  Maybe I should give it all up, deteriorate rapidly and then be sick enough to qualify.  The other thing that could happen is I have an accident.

I value my independence and I am very proud.  My wife keeps nagging me to use a walking stick everywhere I go, and I have only just relented.  But my pride and value of independence makes me a high risk of having an accident.  At the moment I am accidentally falling over once or twice a week.  Luckily, I have so far evaded injury, but I think it is only a matter of time.

So, where to from here?  My neurologist has referred me to another neurologist for a second opinion.  I can't book an appointment with him until the referral gets to him which won't be for two weeks!  That means that I won't get an appointment until next year.  Luckily, I know a guy who is quite adept in manipulating the medical system to his own personal gain;)

As for me, do I self destruct to guarantee I meet the study criteria or do I keep trying to do the best I can.  Well, I have pretty much conquered my depression and I am a proud man.  Self destruction is not in my nature.  However, right now is the lowest I have felt in about a year.  I am feeling bitter and angry.  I have no answer on whether I qualify and no date set for anything, not even an appointment.  Welcome to medical limbo.  Welcome to purgatory.

Neuro Appointment

Tomorrow I go and see my neurologist.  She is smart, brilliant, patient orientated and just an all round great doctor and lovely person.  However, in the past her opinion (which I value greatly) has sometimes been a little conservative.  And I need her blessing and referral to take part in a dangerous, experimental, autologous stem cell transplant trial.  Do you see my problem here?

So, what to do?  I could find another doctor, but I think that is a bad idea seeing as though I am so happy with the one I've got.  I could ask my GP to refer, but he probably wouldn't have all the necessary skills.  For now I am left with my current neurologist which is OK because as I said, she is a great doctor.

Right now I have one option.  Convince her that this is the right thing to do.  That this is my best option and I am 100% committed to doing this.  And I am.  I have a similar thought process to how I tackled my brain surgery.  That is, if I had it and it didn't work sure I would be disappointed, but the thought of not having it and not knowing if it worked would be worse.  The treatment is there, I know it is there and I want it.

The other argument I get is what if something went wrong?  You have a young family and so much to lose.  Yes, but on the flip side, I have so much to gain also.  I want to dance with my daughter, kick the footy around with my son.  I wished I could have taught them both how to ride a bike, but I missed the boat on that one.  That was hard.  Really hard.

My first weapon will be to use these arguments, secondly, I need to come prepared with results and facts that prove this is the right course of treatment for me, and right now that is what I am going to do.  Stop blogging and mindlessly surfing the internet and start preparing.  Until next time, stay well:)

Ouch, it still hurts!

Well, that's not quite true. My hands still hurt from time to time but on the whole they are better. Anyway, I can't use that as an excuse for not writing my blog, but one thing is my hands are, so much so I think it takes about four times longer to write anything.

But my hands still hurt so I talked to my neurologist about it and there is little that can be done wihtout getting quite invasive. Treatment options so far include wearing wrist braces, frequent exercise, not sleeping on my hands and not letting my hands get tired from using them for fine motor skills etc.

On the medical side I can either ramp up my steroid input or carpel tunnel surgery may help. Either of which is not a great option so I am going for the non medical alternatives. I have already increased my exercise by going swimming and got some wrist braces. Anyway, I'll keep you posted on how it all goes.

Until next time, stay well:)

Ouch, it hurts!

I must apologise, it has been a while since my last post. But I do have an excuse, my hands have been killing me.

This has been a real problem at night when I wake up and they just hurt. The only way to stop it is to get up and move around and after about ten minutes it goes away. Any sort of pain relief is quite ineffective.

Secondly, it has been a problem when I try to do something. If I turn my hand over I get a snapping, shooting pain down my wrist and into my hand, which is why I have been avoiding blogging for a while.

Unfortunately for people like me, it is a statistical fact that if you have one serious medical complaint you are more likely to have a second, which is why it is so important to stay healthy (but that is another blog).

It also begs the question 'what am I doing about it?' Since pain meds won't work, I have simply tried to minimise my activity to compensate. I have also been wearing wrist braces at night to stop the night pains. So far, it has worked and I have felt better the last couple of days, but I see the neurologist on Thursday, so I will discuss it with him then.

I don't think it is anything to do with the DBS, but I do think it is a nerve thing, so the neurologist should be able to help. I'll keep you posted. Until then, stay well:)

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:)