My Final and Controversial Prophecy

I actually touched on this a while back and I got quite a response.  I understand that people have very strong views and I welcome them.  If you have something I say I am more than happy to hear it.  But last time I did get a reasonably nasty and aggressive comment (which I deleted).  So if you wish to comment please keep it civilised.

Personally I understand and respect people have religious views when it comes to this subject but I didn't start this blog to debate theology so from my part, like I always intended, I am going to keep this medical.  And now for the controversial topic.  Embryonic stem cell transplantation and research.

It has been a hotly debated topic not only in medical and research circles but also in the media and politics as well as the wider community in general.  The research has for various reasons taken a long time to yield results.  There are a variety of reasons for this but I think the most simple reason is the complexity of what scientists are trying to achieve.  We're not baking muffins here.  This is the most cutting edge and complicated research ever undertaken.

However, it is moving forward, and recently the first person was treated with embryonic stem cells.  The following report demonstrates that we are probably on the precipice of something huge.  This happened over a year ago and the aim of the study was to test the safety of using Embryonic Stem Cells to treat macular degeneration.  The study showed that the procedure was not only safe but stopped further progression of the disease and even improved it.  Check out the links:-

http://scopeblog.stanford.edu/2012/01/23/first-results-of-human-embryonic-stem-cell-trials-for-blindness/
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60028-2/abstract

I believe that in the future research such as this will become more common place and as people see more of the success its popularity will grow.  And as this happens it will command more research and clinical dollars.

Lets face it, the possibilities are endless.  In the early stages the science could be used to grow new simple cells for people like the macula or skin for burn victims.  As the technology advances it could be used to regrow nerves for people with spinal trauma or even a new pancreas for diabetics or brain cells for Parkinson's and Alzheimer's.  Eventually we could see the growth of new limbs for amputees or entire organs eliminating the need for transplantations.THe possibilities are almost endless......  Stay well:)

CIDP Variants

Something I have said previously is that CIDP never seems to manifest itself in exactly the same way twice.  And it is pretty much the same for all Autoimmune Diseases.  The article in this link is really interesting and pretty much corroborates that.  Stay well:)

http://www.cidpusa.org/variants.html

Foiled by my Own Success

As you all know, if you have read my blog before, I went to Chicago last year to have a stem cell transplant for my CIDP.  And if you haven't noticed, it has worked even better than I expected.  Yesterday I swam over a kilometre at the local pool and today I cycled for an hour.  A year ago I simply wouldn't have had the balance to sit on a bike, let alone pedal, and get somewhere.

But what is it that has foiled me?  Well, when I was first diagnosed with CIDP one of the symptoms I had was that my socks always felt creased in my shoes.  It didn't hurt but it was really annoying.  I used to pull my socks up as far as they would go and and the symptoms would not subside.  I would take off my shoe to see if there was something wrong with the sole or I had something jammed in there, but always to no avail.

Eventually I just simply had to come to terms with the fact that it was a symptom of CIDP and it was not going to simply disappear.  So I decided to just ignore it.  Realistically it was the only option I had available to me and after time I least to accomplish this quite successfully.

Now thinking back with the benefit of hindsight I have to say that this symptom had disappeared after my HSCT, but in my successful attempts to ignore it, I hadn't noticed.  So when I noticed a crease in my left foot I simply decided to ignore it.  And that was my mistake.  I went all day successfully ignoring it.  I walked both kids to school.  I went for a bike ride and was gone for about an hour and a half.  I really had quite an active day.

Finally that evening the annoyance had turned to pain and I took my shoe off to have a look.  Not only was my sock creased up, it had managed to wrap itself up around a small stick.  I had even managed to ignore it for so long a blister had appeared on the side of my foot.   At this point I felt there was not much I could do but laugh.  A year ago I never would have done that much exercise to warrant a blister and before I got sick I would have checked straight away.  I guess I was foiled by my own success!  Stay well:)

50 FACTS ABOUT YOUR BODY

My good friend Eddie posted this on Facebook and I for one found it really interesting.  So I thought I'd share it here.  I hope you don't mind Eddie:)

The Human Body is a treasure trove of mysteries, one that still confounds doctors and scientists about the details of its working. It's not an overstatement to say that every part of your body is a miracle. Here are fifty facts about your body, some of which will leave you stunned...or...

1. It's possible for your body to survive without a surprisingly large fraction of its internal organs. Even if you lose your stomach, your spleen, 75% of your liver, 80% of your intestines, one kidney, one lung, and virtually every organ from your pelvic and groin area, you wouldn't be very healthy, but you would live.

2. During your lifetime, you will produce enough saliva to fill two swimming pools. Actually, Saliva is more important than you realize. If your saliva cannot dissolve something, you cannot taste it.

3. The largest cell in the human body is the female egg and the smallest is the male sperm.  The egg is actually the only cell in the body that is visible by the naked eye.

4. The strongest muscle in the human body is the tongue and the hardest bone is the jawbone.

5. Human feet have 52 bones, accounting for one quarter of all the human body's bones.

6. Feet have 500,000 sweat glands and can produce more than a pint of sweat a day.

7.The acid in your stomach is strong enough to dissolve razor blades. The reason it doesn't eat away at your stomach is that the cells of your stomach wall renew themselves so frequently that you get a new stomach lining every three to four days.

8. The human lungs contain approximately 2,400 kilometers (1,500 mi) of airways and 300 to 500 million hollow cavities, having a total surface area of about 70 square meters, roughly the same area as one side of a tennis court. Furthermore, if all of the capillaries that surround the lung cavities were unwound and laid end to end, they would extend for about 992 kilometers. Also, your left lung is smaller than your right lung to make room for your heart.

9. Sneezes regularly exceed 100 mph , while coughs clock in at about 60 mph.

10. Your body gives off enough heat in 30 minutes to bring half a gallon of water to a boil.

11. Your body has enough iron in it to make a nail 3 inches long.

12. Earwax production is necessary for good ear health It protects the delicate inner ear from bacteria, fungus, dirt and even insects. It also cleans and lubricates the ear canal.

13. Everyone has a unique smell, except for identical twins, who smell the same.

14. Your teeth start growing 6 months before you are born. This is why one out of every 2,000 newborn infants has a tooth when they are born

15. A baby's head is one-quarter of its total length, but by the age of 25 will only be one-eighth of its total length. This is because people's heads grow at a much slower rate than the rest of their bodies.

16. Babies are born with 300 bones, but by adulthood the number is reduced to 206. Some of the bones, like skull bones, get fused into each other, bringing down the total number.

17. It's not possible to tickle yourself. This is because when you attempt to tickle yourself you are totally aware of the exact time and manner in which the tickling will occur, unlike when someone else tickles you.

18. Less than one third of the human race has 20-20 vision. This means that two out of three people cannot see perfectly.

19. Your nose can remember 50,000 different scents. But if you are a woman, you are a better smeller than men, and will remain a better smeller throughout your life.

20. The human body is estimated to have 60,000 miles of blood vessels.

21. The three things pregnant women dream most of during their first trimester are frogs, worms and potted plants. Scientists have no idea why this is so, but attribute it to the growing imbalance of hormones in the body during pregnancy.

22. The life span of a human hair is 3 to 7 years on average. Every day the average person loses 60-100 strands of hair. But don't worry, you must lose over 50% of your scalp hairs before it is apparent to anyone.

23. The human brain cell can hold 5 times as much information as an encyclopedia.  Your brain uses 20% of the oxygen that enters your bloodstream, and is itself made up of 80% water. Though it interprets pain signals from the rest of the body, the brain itself cannot feel pain.

24. The tooth is the only part of the human body that can't repair itself.

25. Your eyes are always the same size from birth but your nose and ears never stop growing.

26. By 60 years of age, 60% of men and 40% of women will snore.

27. We are about 1 cm taller in the morning than in the evening, because during normal activities during the day, the cartilage in our knees and other areas slowly compress.

28. The brain operates on the same amount of power as 10-watt light bulb, even while you are sleeping. In fact, the brain is much more active at night than during the day.

29. Nerve impulses to and from the brain travel as fast as 170 miles per hour. Neurons continue to grow throughout human life. Information travels at different speeds within different types of neurons.

30. It is a fact that people who dream more often and more vividly, on an average have a higher Intelligence Quotient.

31. The fastest growing nail is on the middle finger.

32. Facial hair grows faster than any other hair on the body. This is true for men as well as women.

33. There are as many hairs per square inch on your body as a chimpanzee.

34. A human fetus acquires fingerprints at the age of three months.

35. By the age of 60, most people will have lost about half their taste buds.

36. About 32 million bacteria call every inch of your skin home. But don't worry, a majority of these are harmless or even helpful bacteria.

37. The colder the room you sleep in, the higher the chances are that you'll have a bad dream.

38. Human lips have a reddish color because of the great concentration of tiny capillaries just below the skin.

39. Three hundred million cells die in the human body every minute.

40. Like fingerprints, every individual has an unique tongue print that can be used for identification.

41. A human head remains conscious for about 15 to 20 seconds after it has been decapitated.

42. It takes 17 muscles to smile and 43 to frown.

43. Humans can make do longer without food than sleep . Provided there is water, the average human could survive a month to two months without food depending on their body fat and other factors. Sleep deprived people, however, start experiencing radical personality and psychological changes after only a few sleepless days. The longest recorded time anyone has ever gone without sleep is 11 days, at the end of which the experimenter was awake, but stumbled over words, hallucinated and frequently forgot what he was doing.

44. The most common blood type in the world is Type O. The rarest blood type, A-H or Bombay blood, due to the location of its discovery, has been found in less than hundred people since it was discovered

45. Every human spent about half an hour after being conceived, as a single cell. Shortly afterward, the cells begin rapidly dividing and begin forming the components of a tiny embryo.

46. Right-handed people live, on average, nine years longer than left-handed people do. This is largely due to the fact that a majority of the machines and tools we use on a daily basis are designed for those who are right handed, making them somewhat dangerous for lefties to use and resulting in thousands of accidents and deaths each year.

47. Your ears secrete more earwax when you are afraid than when you aren't.

48. Koalas and primates are the only animals with unique fingerprints.

49. Humans are the only animals to produce emotional tears.

50. The human heart creates enough pressure to squirt blood 30 feet in the air.

Stay well:)

Following my own Rules

Now as you all know, I'm back in the house with the big red cross next month to have my kidney stone removed.  It is something that I have done before and I will most probably have to do again so I can pretty safely say that I know what I am in for and what to expect.  In the past I have thoroughly researched the procedure, equipment used and the doctor performing the job.  However, there is one variable that I am not familiar with and that is the hospital I am going to.

I know, I know.  It is hard to believe there is a hospital south of Queensland that I haven't had the pleasure of booking in to for a short visit but there is one and I've found it!  The hospital in question is The Epworth Freemasons Hospital in East Melbourne.  Now for anyone living in Melbourne the name Epworth is not a strange one.  The Epworth Hospital (original campus) in Richmond is one of the oldest and best known hospitals in the area.

What many people do not know is that Epworth Healthcare has over ten facilities in the greater Melbourne area.  One of these hospitals, the Epworth Eastern, I have visited on a number of occasions. My last three kidney surgeries have all been there and I also had my tonsils out at that hospital.  My positive experience with the hospital and the overall good name of Epworth makes me feel comfortable that the Freemasons will be just as good.

However, even though they share a name they are completely different campuses and therefore I personally feel it prudent to be diligent about my research into the hospital.  After all, the Epworth Eastern is very shiny and new having only opened in 2005.  It is purpose built with all the state of the art equipment.  The Freemasons was opened in 1937, however it didn't become part of Epworth Healthcare until 2006.  So their background and culture would have been quite different from the start.

I consider this really important.  As a self proclaimed "professional patient", I have one rule that I think is paramount.  Take charge of your own health care.  Make sure you know about what is wrong with you, your treatment options, the doctors treating you and of course the facility you receive treatment at.

I guess the big question is then, "How do I go about searching information about the hospital?"  Well,  I think it is quite individual in nature.  You have to satisfy yourself that you feel confident and safe at the hospital.  So first, I look at the website of the hospital.  You can get a good idea of the size, culture and operation of the hospital here.  Freemasons has about 230 beds and marks one of its specialties as urology.  So that is a tick in my book.  There is also a CCU and an ICU so if the you know what hits the large spinning thing, I know that this hospital is equipped to look after me.  Second, a hospitals own website is not exactly going to publish what they are not doing properly and scandals they might be involved in, so it is good to search local news etc.

Fortunately, there was nothing there.  But my investigation isn't over yet.  Every hospital has slightly different procedures and therefore require different things from you.  At the very least it is handy to know the admitting procedure and where you need to go.  If you know that you can help mitigate some of the stress on what can be a highly stressful day.

Now there is probably one little question niggling away at your mind.  Why am I going to a different hospital?  Well unlike many health care systems around the world, it is not uncommon for a doctor in Australia to have operating rights at more than one hospital.  In fact, it is not uncommon for doctors to be on the roster at as many as five or six hospitals.  The Epworth Eastern was probably the least frequented hospital in my urologists schedule, and in an attempt to consolidate his workload it only made sense for him to drop this one from his schedule.

So there you have it.  If you are interested in having a sticky beak at Freemasons hospital, I have provided the link below:-

Freemasons Hospital

And yes, if you are wondering, it is the hospital they use for filming in the Australian drama TV series "Offspring".  Stay well:)

It's all come crashing down......

Just when everything seems to be tracking along nicely, some bad news strikes and I am plunged back into the world of hospitals and medical procedures once again.  All my fellow CIDPers and HSCTers are probably waiting for me to talk about that horrible "R" word (relapse), but no.  Fortunately not.  Everything is going swimmingly in that respect.  I am referring to a kidney stone that has been quietly growing.

It is not as bad as it sounds.  I picked up the stone in a routine X-ray I had last week and it is not that big yet.  It is only about 8mm but I still booked into see the urologist as sooner or later something has got to be done about it.  On the positive side, only one kidney is affected, it has been 18 months since my last surgical intervention and I have no residual pain.  Any of my fellow cystinuric readers will be quite jealous.

I wasn't surprised I had a kidney stone.  Every cystinuric patient expects them on a regular basis.  I was actually surprised it wasn't bigger.  When I had my Stem Cell Transplant I effectively dropped my fluid intake to less than 500ml/day and most of my medications I wasn't taking as I felt so nauseous.  My old nephrologist would have been furious as he didn't care about any of my other conditions as long as I got no stones.

So where to from here?  I had a good frank discussion with my urologist (which was a little boring as it was almost the same as last time I saw him) about when to intervene surgically.  We agreed that the ideal time was when the stone was at a size small enough to be treated with one surgery but not large enough to warrant two interventions.  Basically put, the fewer number of surgeries over a lifetime, the better.

However, we both agreed that that time was about now, but there was no immediate hurry.  So we slotted a date into the diary that suited me best and away we go.  FYI that date is the 18th of April.  Until then, it's just focusing on nerve and muscle regeneration and getting my fitness to the level I want it to be at.  Until next time, stay well:)