What can I say. I can relate to Chads story perfectly. Every point he makes he articulates perfectly and I agree with all of them especially the one he makes about which doctor treats which disease. Watch the videos to find out what he said. Stay well:)
It is the four letter "c" word that send shivers down the spine of any doctor or health care professional. Using it inappropriately can spell disaster for anyone in the medical field with your low breed ambulance chasing lawyers looking to file suit on whoever dares even mutter the word. Yes, I am talking about cure.
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
A couple of weeks ago I had a phone interview with a lady from Monash university who was doing a study into medical tourism. Finding out what motivated people to do such a thing and their personal feelings about making the decision.
My decision to embark on a trip to a foreign country over a year ago was one of (if not) the best decisions of my life. I have my health back and still over time I am slowly getting better and better. I also know other people who have benefitted from traveling for treatment and going overseas basically opens up a much wider scope of treatment options. Hence, I am a big advocate of medical tourism.
BUT, a venture such as what I did or any form of medical tourism should only be undertaken with great caution. There are a great many factors to consider that may effect getting treated properly. Even when I went to the USA, which has the same language and a similar culture there were differences in attitude and procedure that were very different.
However, this is not the main reason to be cautious. In your own country you are normally quite familiar with the ethics and safety of your medical system. In most countries the medical field is very closely scrutinised. In Australia it is impossible to practice medicine without a license and all hospitals and medical bodies are governed by an ethics committee. Above them there are state and federal laws ensuring that medicine is practiced safely and ethically. You go to another country you cannot be sure of this framework so it is important to do your homework. One of the reasons I chose to go to Chicago was I felt very secure with the medical practices of both the country and the hospital.
Another issue that you need to be wary of is the snake oil salesman. These disgusting vile creatures are the lowest of the low. They basically offer services that won't work. Praying on desperate individuals that are trying to rid themselves of illness is worthy of scum who are only one or two rungs from the bottom of societies filth. It is really important be able to identify this and this can be achieved by researching the doctor, the medical institution and the country you are thinking of visiting to see if it is possible for the unscrupulous to fall through the cracks.
At the end of the day the most important thing is to make sure you are comfortable doing what you are doing. If you are in a trial you must be prepared for the treatment to not work. No matter what there is always going to be some risk. As an individual you have to work out the cost and risk vs benefit. If you think it is ok, then go for it. Until next time, stay well:)
I had lots planned for last week. I not only feel well enough now to be able to get off my BFA and do something, I actually feel driven to do so too. Honestly, this is a new feeling for me. I haven't felt like this in the best part of ten years and I had forgotten what is was like to feel motivated and driven. It is amazing to think that when you are sick what effect it has on you that you don't even realise.
Anyway, my motivation took a dive when I started developing a cold on Monday. But this was no time to crawl back under my stone. I just had to suck it up and push on which I did. Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.
Anyway, I had my first meeting on Tuesday morning. It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases. They do this by financially assisting sufferers with treatment, medication and equipment. I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).
I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure. Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability. From where I stood the Steve Waugh Foundation was a good fit.
My meeting was very constructive however, it was not quite the right fit. I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so. The Steve Waugh Foundation is set up to assist people financially. I want to directly advocate for people and help find treatments for them so it is not a perfect match. On the plus side I got some great contacts and was able to figure out my next step.
In the long run this is the direction I want to go in. I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others. So, watch this space. I have only just started.
On the other "professional" note I met with an old friend who has now become a neurologist. Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT. Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded. Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan. I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.
I also met with someone who could help me with my book. The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable. I honestly have to say that without her assistance I probably wouldn't finish the book. I was really quite nervous when I went to see her. I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish. Luckily, she said she really liked it and keep going. Phew. I once again could breathe and keep going with renewed confidence that I was doing a good job.
But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest. When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends. After I got sick I had to stop playing as I couldn't run the length of the wicket any more.
When I had my HSCT last year one of my goals was to play cricket again. So I hooked up with old side and went out for a game. As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches. And it did. According to the score card I was the best performing member of my team! Which doesn't say much, my team isn't very good but I'll take it anyway. Oh and yes, we got severely hammered. What counted for me though is that I played. And I not only played but I was competitive.
I have attached the score card. They have me down as playing as my nickname, Pommie. Which isn't so bad. At least I am not Gobble Gobble or Huggies.
Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek. What an awesome movie! Until next time, stay well:)
OK, I admit. It has been a while since my last post. But for good reason. I have been really busy. I have been making good headway with my book that I told you all about last time and I have been really busy with some other things too. I would love to share them all with you but not now. All in good time:)
Being busy has also given me a heap to write about and it is all good. I am really excited about the remainder of this year so I will keep you posted. But what to write about now? Well, if I stuck I can always return to my favourite subject. Me. I'll give you a wrap of my latest kidney op.
But before then I have something else to share. This is post number 400! And I have been writing it for over three years now. I hope you have all enjoyed reading.
Well, wrapping up my kidney surgery. I got the stent out under local this time which wasn't great but to get an anaesthetist to come in would have meant another week. I had to weigh up the pros and cons and decided that being awake for the procedure wasn't as bad as a week with a stent. FYI, stents suck.
It all went quite well though. I did have a small problem afterwards though. I was having some pain and irritation in the down stairs department and I thought I might have a UTI, which is reasonably common after kidney surgery. So I went to the doc and he agreed and put me on antibiotics. A day later I passed a couple of small kidney stones that were probably remnants of my kidney surgery.
Well it's nice to be through it. Until next time, stay well:)
Well, I must apologise. I said I would write to let you all know how
I went from my surgery within 48 hours.
It has now been three days since I woke up from my forced unconsciousness
and as of yet I have failed to write anything.
If you were worried, I am sorry but the good news is that everything
went well and I am well on the road to recovery.
There are a few things that I didn’t really
like about the procedure though. First,
as I mentioned in an earlier post, I went to a hospital that I had never been
to before and although I was perfectly happy with the hygiene, cleanliness and
quality of the hospital from a medical point of view it was no where near the
best I had been to.
It was all the little things. Being a much older hospital all the corridors
were very narrow. 100 years ago when the
hospital was built the trolley beds were much narrower so to fit bed through
was easier and didn’t require as much room.
These days the average bed is much wider and therefore requires more
room. So much so that two beds could not
fit down one corridor. This would be
even more problematic if people left wheel chairs, IV poles etc down the
way. When I went for my morning walk (on
the only morning I was there) it felt more like an obstacle course than a
Second, the plumbing. There were no mixer taps so the temperature
of the water was either hot or cold. To
get a mix you had to fill the sink up.
The other problem with the plumbing was that the old pipes made a lot of
Third, the food. Now hospitals, along with schools and
airlines have very poor food but in recent times the food at all locations has
markedly improved. Unfortunately, not
here. But at least it was only one
night. Lastly, my biggest
complaint. There was no WiFi!!!!!
However, if I had to go back there I
probably would as there is a great deal more to hospital treatment than the
little fluffy extras to a hospital. The
staff were pretty good, and I am very comfortable with my doctor and this
limits the number of available hospitals.
I guess that I could try and convince my urologist to change his list of
hospitals but I think that would be a very hard get.
Thinking about my whole experience I do
remember a post I wrote recently about how I found it hard to recall my three
week hospital visit in Chicago. In the
middle of my hospital visit at the Freemasons I could recall that my experience
was really similar to my last kidney stone outing but before I went in I
recalled it as not nearly being so bad.
I think that the mind does play tricks on ones self in order to protect
itself from mental trauma. However, even
in the middle of all of it I still think that the intervention is a small price
to pay to be stone free.
There is one thing that I really find more
annoying than others though, and that is urinary stents. All the medical professionals say they don’t
hurt. I hate to burst their bubble, but
they’re wrong. You see, a stent
basically ensures that swelling doesn’t seal the ureter blocking the
kidney. The problem is that although the
stent will bypass potential swelling, it also bypasses a valve that prevents
urine from washing back into the kidney.
So when pressure in the bladder increases (Such as when you urinate)
urine floods back into the kidney causing pain. And when you have as much scar tissue in your
kidney as I do it hurts even more.
However, it is better than a blockage so it is a necessary evil and just
means that I have to take some pain medication to counter which also comes with
its own set of problems such as drowsiness etc…
Well, that is it for me. The stent comes out on Tuesday which is only
two days away. Until then, stay wellJ
Well, I have just got back from a wonderful two week break in the Gold Coast with the family which was great. However, I know I am firmly back to reality as tomorrow I am back to hospital to have my kidney stone removed.
Now I just want to make a few points here. First, this is nothing to do with the stem cell transplant I had last year. This is a completely different disorder. The HSCT process has been and continues to be a complete success. Second, it is nothing to really be worried about as I am not. My fellow cystinurics would know that unfortunately this is routine which is a good and bad thing. Bad because it is routine. Good because I know exactly what to expect and I have come to fully accept it as part of life.
It has been so routine for me that I have gone about my everyday life in such a way that I have all but forgotten about it. It is now almost 7.00pm and I still haven't packed yet. I really am simply concerned about what I am going to eat for my final meal (as I am nil by mouth from midnight) and finishing this blog.
Now some may consider this a no no, but I do it anyway and that is tonight I'll stay up really late so tomorrow I am tired. Why? Well I am going to sleep because of the anaesthetic tomorrow anyway and I'll probably doze all afternoon. If I sleep well tonight I'll be awake alight tomorrow night as the anaesthetic all but wears off. That is really boring as there is little to do during the middle of the night in hospital.
Well, feel free to wish me luck. I'll be posting in the next 48 hours to let you know how I went. Stay well:)