Training Day

Ethan Hawke plays the part of the rookie cop who gets partnered up with the veteran and highly corrupt cop played by Denzel Washington and........  Hang on a minute.  That is the wrong training day.  Mine has far less guns and is not nearly as violent.  In fact the most violent thing that happened was when I was tapped on the knee by that rubber thingy (yes, I believe that is the technical name;)) when they tested my reflexes.

So on a cold sunday morning I caught a cab to St Vincent's hospital where I was greeted with a warm cup of tea before being shown to an examination room where I would be poked and prodded by a bunch of medical students.  I always seem to be a little off the mark when giving my opinion of the students.  I guess I never quite know what the examiners are looking for but I recon two out of three did a fairly good job.  The third one knew his neurology, but fell short by having a poor understanding of his anatomy which made correct diagnosis almost impossible.

One thing I find really weird about the process is you are not allowed to converse with the students.  They  are allowed to give instruction and ask simple questions that barely require no more than a yes no answer, but that is it.

In a way I think it is a little unfair.  For example, my craniotomy scar.  In a clinical setting the doctor would simply ask "why do you have a craniotomy scar?"  But they have to guess and it just adds an element that can mislead them.  Unfairly in my opinion.  Seeing as I am still suffering from chemo baldness the most common conclusion was that I had a tumour surgically removed.  It just does not seem accurate.  Just ask me.  You'll have your answer in less than 30 seconds and they can move on to diagnosing the problem at hand.

But, I'm glad I did it and if asked I will do it again.  It makes me feel good to give a little back to medicine from who I owe so much.  Even with my whinges and complaints about the health care system they have done a great job looking after me over the years.  To all the med students I saw I wish you all good luck in your upcoming exams.  If I fronted up at emergency tomorrow I wouldn't mind being treated by any of you.  And to all my readers, until next time, stay well:)

Week 6

Labs were fine from last week and I didn't have to have them done this week which is always good news.  The diarrhoea I was having last weekend has cleared up but seems to never be far away as all my movements seem to be softer than normal.

I went and saw Professor Miles Prince this week and he seemed to be relatively happy with my progress.  It is interesting that there are differences in the post transplant care between what the people in Chicago want me to do and what the doctors at Cabrini use.  Personally, I went through the procedure in Chicago so I feel more comfortable following their protocol than the Cabrini protocol.  I got the feeling that Miles would prefer to follow the protocol from Cabrini, but he said he was happy to follow their instructions.

There has been no real improvement of note this week although as with every week so far I do feel the slow recovery from the chemotherapy.  Unfortunately I did manage to somehow contract a cold which had to be pretty amazing since I've hardly seen anyone.  I think I caught it off my daughter who has had a mild sniffle.

Normally if I catch a cold it doesn't effect me that much but with all I've been through and a weakened immune system, this one has knocked me for six.  I feel like someone has pumped slime into my head to the point it is about to explode.  My nose keeps running, my eyes keep watering and my ears feel blocked.  This is coupled with a headache, lethargy and a nasty cough.  I talked to Miles Prince about it and he said to just get some rest and drink lots of fluids and call him if it gets worse or I start running a temperature.

Well, I think that's it from me for now.  I will update you all again next week and hopefully have other interesting or humorous titbits to share in the mean time.  Until then, stay well:)

Too funny

A friend of mine from the UK posted this on Facebook.  It was too funny I had to share it.  Maybe the pencil pushing, humourless bureaucrats at the NHS need to find a 30 something male with a juvenile disposition to proof read their signage.  I thin I might know someone.  Stay well:)

Week 5

At the moment it is a little bit like two steps forward, one step back.  On the whole I am getting better.  How I feel now and how I felt three weeks ago when I arrived back in Australia are worlds apart.

I am still feeling quite tired from time to time.  I find that if I do something that involves being active I get quite tired but there is no rhyme or reason to it.  For example, the other day I went and had my blood test done and went out for coffee with my great uncle and I was pretty good afterwards.  But then yesterday my daughter wanted to show me something in her room so I went upstairs to have a look and after fifteen minutes I was exhausted.

On the whole there is continuous improvement.  The diarrhoea that I experienced last week slowly eased off.  The C diff test came back negative so what was causing it was a bit of a mystery.  It was probably the antibiotics but then the one step back.  This afternoon it returned, and with it the feelings of lethargy so I have been a real couch potato.  I was also supposed to go to the in laws for dinner, but with a movement around every half an hour it is probably not a good idea.

Unfortunately I have not got my blood test results back from this week.  As my specialist is organising them and not my GP I am using a different lab and I cannot get the results until they have been reviewed by a doctor.  It is kind of annoying as I need to send them to Chicago.  On the bright side I do not have to have my blood done every week now.  It is now fortnightly so I get a week off.

On another note I had my first shave since the middle of March yesterday.  It had to happen sooner or later and is a sign my hair is growing back.  But it isn't growing back completely.  The hairs on my beard used to be dark brown, they are now blond and only really growing on my chin and under my nose.  Growth has not recommenced on my cheeks or neck.

Well, I think that's it for me today.  I'll give you another update next week.  Until then, stay well:)

This is scarily cool!

What they can do with the brain is amazing.  I'm living proof of that with my deep brain implants, but this is even more amazing.  I saw this on the Dr Wes blog and had to share it.  Stay well:)

Is it working?

What a massive question.  It has now been a month since my transplant so I have been asking whether or not I have seen any improvement.  And my answer.....  I'm not sure.  I will elaborate further in a minute, but first I want to answer a different question.  That question is if I didn't work am I still glad I did it?

The answer to that is much more simple.  Unequivocally, yes.  Why?  Well for a couple of reasons.  It is not in my nature to stop trying to find a treatment that will make me better.  I couldn't leave such a promising treatment alone.  I had to try.  Second, I could have waited ten years to have the procedure when hopefully it would become a mainstream treatment.  If I had done it then and it worked I would probably feel bitter about the ten years I had lost to the disease.  Also, knowing that there was a treatment that could work that I hadn't tried would eat at me.  At least if I tried and it didn't work I would know and I can move on.

Now back to question one.  Why am I not sure it has worked yet.  There is evidence that I have seen slight improvement, but I guess the lawyers would call it circumstantial.  So what evidence do I have?

First, the sore arms I had nearly every night have all but disappeared.  If anything I just get a small tingling in my fingers but it does not wake me or hurt.

Second, I may have a slight increase in movement when I do some exercises.  When I try to stand on my toes I have a slight bit more elevation than I used to and if I try to jump I can actually feel a bit of space between my feet and the ground.  However, I have recently lost eight kilos so the difference in weight could be what is allowing me to achieve this.

Third, a couple of my friends have said that my voice sounds better.  And by better I mean clearer and steadier.  I also have slightly improved bladder control.  Now, let me clarify, I wasn't going around wetting myself but I was finding that when I felt the urge I had to go quite quickly.  I have found that recently I have been able to hang on longer and retain more fluid too.  I was never sure if this was a CIDP thing or a drawback from all the kidney surgery I have had.  Honestly I think it is a little bit of both.

So, why am I still not sure?  The results if real are incremental  at best and if I think about it rationally I have to question the validity of the results.  It is all subjective data and emotionally I really want it to work.  I really, really want it to work and my rational mind must ask whether this compromises my objectivity?  Damn my rational mind!  It would be so much nicer to live in ignorant bliss and convince myself it was working.

Anyway, I have made a solid mental note of where my capabilities lie so when I retest myself I will have something solid to compare to.  But before we crack the champagne I think it best to wait for some more definitive proof.  I'll keep you posted.  Until then stay well:)

Week 4

Improvement has continued which is great.  The fatigue and tiredness seem to be a little less, but if I have a burst of activity I will normally have to have a rest in order to recuperate.  Another good thing is the UTI I had has cleared up but might have left a nasty side effect.  The antibiotics that they gave me for the UTI also clean out the good bacteria in your intestines which allow the bad bacteria to proliferate.

As a result I have been having lots of diarrhoea.  I have raised this with the good people in Chicago and also my doctors here and they agree that I should have a test for clostridium difficile (C-diff) the bacteria that normally grows in the absence of good bacteria.  I should get the results on Monday.  The irony is that in order to treat c-diff which was caused by antibiotics, the treatment is, yes, you guessed it, more antibiotics.  But I hope it is diagnosed quickly as I am getting tired of the diarrhoea all the time.

The other question I have been asking myself a lot is has the procedure worked?  Well, it is a difficult question to answer so I will make it the subject of my next post.  Until then, stay well:)

hehehe;)

When I arrived in Chicago they asked me how much alcohol I drink.  I told them "not much, I only drink socially."  Nobody thought any more of it until after my harvesting when the next question they asked was are you an alcoholic?  A little taken aback I asked them why they would think that?  Instead of the stem cells they were planning on harvesting they showed me what they managed to collect.  Oops;)

Stay well:)

A Nice Meeting

Today I had a lovely meeting with fellow HSCT survivor Carmel Turner.  Carmel had Multiple Sclerosis and had her SCT about a year ago.  Since then she has enjoyed a steady recovery which is fantastic for her.  We had a great chat, mainly about all things neurological and SCT and the problems with the Australian medical industry.

I admire Carmel.  I had to work really hard to get myself to Chicago for an SCT.  Ironically I think Carmel had to fight even harder than I did to get herself in a program right here in Australia.  I think it just goes to show that although there are many good things about the Australian health care system one of their problems is the conservative ideology and antiquated thinking.  Why is a life saving and life improving procedure so hard to have done?

Why should out dated methodologies be promoted against newer methods that have been proven in academic and medical literature.  Albeit overseas.  The thing is the papers and the studies are legitimate and if I can find them then surely anyone (and by anyone I mean doctors) should be able to find them too.  After all, aren't doctors supposed to stay abreast of medical innovation?  If I was a doctor I think I would be extremely excited for both medicine and my patients if I learned this information.

I congratulate Carmel for getting it done.  Being sick and having treatment is difficult enough but with the help of her husband Scott she battled the administration and did not just get what she wanted, she got what she needed.  Unfortunately, there are many that don't.  Anyway, it was great to meet her and wonderful to see first hand how HSCT has helped someone.  Until next time, stay well:)

Marijuana Man

Marijuana.  As soon as you mention it, images of a bunch of stoner uni students sitting around in a share house with the play station fired up smoking bongs is conjured.  But I am not talking about the recreational use of the drug.  I am talking about the medicinal purpose of the drug. I am talking about Marinol.

Now if you had asked me my to give my opinion on medical marijuana (MMJ) three months ago I would simply told you that I believe if it did have a genuine medical benefit there is no reason why it shouldn't be used but I would also counter it by saying that I have never researched it so my opinion would not be extremely valid and it has never been a viable treatment option for me.  Or has it?

Personally I think my opinion on the subject of MMJ has become a lot more valid in the last four weeks.  Why?  Because I was treated with marinol during my stem cell transplant and it worked great.  I was given a plethora of anti-nausea meds during my hospitalisation and although they did work, the only thing that would allow me to tolerate any food what so ever was marinol.  And during the procedure it is important to eat to maintain your energy levels.

So my question is if it worked so well why has it never been offered to me as a viable option in Australia?  I understand it would need strict regulation but we prescribe far more addictive drugs for far less all the time.  In hospitals narcotic based analgesia is the go to medication for anyone with pain and addictive anti-depressants are being shelled out like M and M's.  However, I have been in hospital in Australia and suffering severe nausea and although this drug would most likely have helped I was not offered it.  I don't even know if it is available over here

But MMJ has such a negative spin.  People always think of pot smoking hippies when you think of marijuana but just because you take the drug medicinally does not mean you'll turn into a pot smoking hippy, just like morphine for pain will not turn you into a heroine junkie.

Now I had the marinol for one reason.  Post chemotherapy nausea.  There are many reported medicinal benefits of MMJ.  We could prescribe it, monitor it, control it and make sure that the product is used safely and for its maximum benefit.  Or we could simply let patients suffer or force them to illegally purchase an uncontrolled substance that is not regulated for quality.

At the end of the day it comes down to patient welfare.  If it can help don't we have a responsibility to prescribe it responsibly as we do with any prescription drug.  Society needs to let go of the stigma associated with marijuana and start thinking about medical benefits.  Then we can start using it for improvement of the lives and easing the suffering of the people that need it.  Until next time, stay well:)

Good news for cystinurics

Dr David Goldfarb put this link up on Facebook a week or so ago and personally I think it is the most exciting development in cystinuria since thiola.  However people, let's not get ahead of ourselves, this has yet to go through the proper trials.  This is a new drug that hopefully will decrease stone size but increase the number of kidney stones.  But with more smaller stones they would be able to treat them more effectively and they would be easier to pass.  Here is the article.  It is at the bottom of page six.  Stay well:)

http://www.newsandviews-digital.com/newsandviews/20120304?pg=6#pg6

Week 3

So sue me!  I haven't blogged for a while.  But I guess that should be a clue in itself.  Don't worry, I haven't been slowly dying or anything, I have just been super tired.  I am still getting up in the morning and by the time I have showered and dressed and made it to the family room I'm exhausted and about all I can manage is to lie down on the couch and rest.

And that is about the story of my life at the moment.  Do something, have a rest.  Go to the bath room, have a rest.  Eat something, have a rest.  I am comfortably sleeping more than 12 hours a day.  On the good side when I'm resting, either in bed or on the couch I feel perfectly normal, it is not until I start doing stuff that I realise I am still recovering and it is going to be a while before I'm back to normal.

However, if I am to hasten my recovery I have to start being more active.  But it does have to be measured.  Too much and my body will regress or I will get sick, which is what I think happened when I travelled home.  I think it was just too much.  Too little, and I may hinder my recovery.

But, the main thing is I'm getting stronger everyday, but I don't think it will be an overnight fix.  I think it will take a deal of time.  How much?  Well, your guess is as good as mine, but while I'm home and dare I say it "feel human" I can wait.  My blood work is still seriously out of kilter.  When I got last weeks results reading down the list nearly every item had either an 'L' for low or a 'H' for high next to it and also bolded just to hit home that the test was abnormal.  I think my blood work returning to some form of normality will dictate my recovery.

As for my appetite, I am pleased to say I have not felt nauseated in a few days now.  I am eating three meals a day, but I find I am not really that hungry at breakfast or dinner but lunch I'm ok.  Portion size is down on all meals still, but I am eating an adequate amount.  The other funny thing (which is probably good) is the cravings I've been having.  I believe that when your recovering from illness you need to listen to your cravings as they are trying to tell your body what it needs.  I have been craving simple fresh foods like vegetables, cheese (just plain old cheddar, nothing fancy) and good quality meats.  Off the menu has been chocolate, desserts and coffee.  So I have been eating remarkably healthy although less.  Another plus side to this whole saga is that I have lost eight kilos!  See honey, I told you I'd lose weight;)  The question is will I keep it off?

On another not so good note my suppressed immune system managed to let a urinary tract infection (UTI) through the guard.  Being cystinuric I am no stranger to a UTI so luckily I caught the symptoms early and got to the doctor soon for a course of antibiotics.  However, this was the first UTI I have ever had where I have not been symptomatic with a kidney stone or post kidney surgery.  However the antibiotics seem to have done the job.  I am no longer symptomatic and in that respect I feel fine.  Well I think that is about it for now.  Until next time, stay well:)