Wednesday, June 1, 2016

FROM CKD TO TRANSPLANT


Please note the image shown is for illustration purposes only.
Although I was not aware but my doctor knew about my impending renal failure. He was a cardiologist and was not interested in my other organs because he wanted to minimize my time of visit and to get me to do a series of angiogram and angioplasty. Every time I visited him, he would concentrate on the cardio and cholesterol statistics.

Despite of creatinine of 260, he has already done three angiograms on me and the money was good for him.

Does this scenario not sound familiar for many cases during your visits? Waiting for one hour but only 10 minutes with the doctor.You pay for every tests they can dump on you to justify the costs of the machines he has but you leave the clinic as ignorant as you came.But you feel secure because you went to one of the most expensive doctors in your city and you assumed that since nothing was highlighted, as is well

Please note the image shown is for illustration purposes only












I was informed that my CKD was at stage 4 when I went for one of the cheap package executive check up at another hospital and was told that I was on ckd stage 3 going on 4. Of course all worries come into your mind immediately.

Should I confront this cardio whom I had relied on for ten years already?How much more damage will he cause before I die? He holds strings of awards from medical associations overseas and there was no need to doubt him. I get frustrated and angry because I hold an important job which pays for all medical costs. I was just one step away from becoming the youngest CEO of my organization. My family companies were just being listed on the stock exchange AND Yet NOW I am on the door steps of becoming a semi invalid

Is there an immediate cure, relief or defense like the type you can get for high BP. You console yourself that since there was pills for every aches and nooks that surely there will be something for high creatinine or failing kidneys

But the more I researched, I was surprised to know the answer is NO. It seemed that diet and supplements were the only answer. The dreaded answer was that the creatinine level will progress regardless and then jump exponentially and then it’s off to dialysis.
  
Then I look forward at what is in store for the future.It seemed like the option next was transplant or dialysis.Dialysis is easily available but apart from transplant from relatives or close kins,transplant using kidneys from third parties without going through the authorized government agencies has been outlawed in almost all countries worldwide .Only kidneys from government approve dinstitutions were allowed

In my country, there are 19,000 patients waiting for transplant and there is only 1 donor per 1 million population.Dialysis seemed to be the only option. I tried to ask, read internet about dialysis. Surprisingly, nothing very adverse has been written about the comfort, body changes, drinks and food restrictions about dialysis or the laborious time one spent on these machine. Most articles are descriptive and procedural

No one tells you about the advantage or disadvantage about single or double pump machines. There are no analysis about the advantage of each brand or make of machine.  So which centre do you attend?

No one talks about the biological and physiological effects dialysis has on the patients and many things?So I said to myself, well I will assume that all machines are OK and so it does not matter where one carries out the dialysis.

Before I go on, let’s reverse time and talk about my search for medical advisors

When I was told that CKD was not reversible, I refuse to accept it.How can it be in this modern age of medicine and pharmacy? The market for any relief, cure or even reversing must be so lucrative that these medical companies would not leave it alone.   But would you believe, they have and they did!!!

NOW comes the mystique part

I started to wind down my business and quit my job in order to find time for my own research for a relief or cure


NEPHROLOGISTS

It was natural that one goes firstly in any medical problem to see a doctor…Nephrologists.
Doctors are a different class by themselves.They are formally well trained


QUAKES AND SALESMAN

There are basically threet ypes. These are the “witch doctors “who are  totally not medically  trained but they are cheap and in a way provides the first hope, Many of them do not know what they prescribe.

Sabah Snake Grass
In addition there are also faith healer, spiritual healers, sandhus from India

There are the TCMs…traditional Chinese medical doctors,homeopathies whosefees in many countries are recognized for tax and health insurance purposes. I would classify the housewives and home brews in this category.

What is scary is that almost everyone who has some knowledge has a cure.

Misai Kucing (Orthosiphon stamineus, Benth)
They don’t charge anything for the advice BUT the trouble is that they have not tried the brews themselves and gets angry if you don’t take that drink.


Some of these drinks are bitter or taste funny that it leave you choking and purging.Many of these are garden and roadside herbs.Roadside herbs are bad because they cause insecticides sprayed by the council to control their growth I will not cite the names and types but there are too much to list out.


Porcupine Bladder

The cruelest case comes from having to eat each day, a half teaspoon of dried powered gall stones from the gall bladders of giant         porcupines from Indonesia. Each stone with the size of a ping pong ball costs usd4000.It is grinded into powder form and can be consumed twice daily for about a month. Apart from the fact that it did not demonstrate any healing effects, just imagine what the rampant killing of these rare species that are carried out is doing to the world? The gall bladder is extracted whilst the animal is alive just like what they do to the honey bears in China.


Pokok Telinga Kera (Monkey Ears)
Then, lastly  in  the internet there are also many vendors selling books or CDs claiming money back guarantees for positive results.Be careful about buying them because here they contain nothing your nutritionist do not know.The introductions, opening paragraphs, their claims are so long in these books that it is impossible to find where exactly is the product or procedures that they are selling








MEDICAL DOCTORS

These are the Nephrologists. Once you visit one you would have visited all because almost 90% of them speak,give the same advice .They probably all graduated from the same text book. The ones in private practices are much more attentive then most of those in government service.Those in government services are as usually arrogant or impersonal as they have too many patients to attend and of course, they are not profit orientated. The lack of professional competence in some hospitals is scary.In one hospital, the general surgeon stood in for the vascular surgeon.Some jobs done are so bad that the fistula looks like a protruded buttress roots. But like everything, still there are some nice persons there

It is important to check out the background of the private practitioners.Those who have worked in transplant environment and in bigger hospitals before they come out to practice are better.The skills of the Nephro comes in the attention they relate their medicine to your pathology reports

But like my cardiologist, there are many who could not give a damn.They just want more money and more money

Here is an example:

My first  Nephro charges on usd50 for consultation.  But every time before you can greet him, he draw blood and the charge is usd300 for a full examination. For medicines, I do not know why at creatinine of 300, I was given cellcept and herbesser.Each time I had to buy three months supply and there was tons of surplus at home.Each monthly or 6 weeks  visit will costs with the usd50 fees, up to usd2000.I reconcile that since he is from a good hospital and he may know something that I do not know, I should not question him.After all I am on research

On another occasion, I came under care of a alternative medical practitioner.He convinced me because on the walls of the clinic, he claims to have graduated from Ireland.He claimed that his colon cleansing practice has reduced the creatinine of many patients.It consist of inserting a tube into your anus for 40 mins for 20 different times.I did not like the indignity but then what the hell.

As long as anything was not invasive, it is worth the try,

At the end of the 20 times my creatinine went up from260 to 420.The treatment did not help but I ended up buying a lot of medical supplements because he was in that business also

I went for a few sessions with another medically qualified doctor performing chelation. Here amino salts are injected into your blood circulation and over three hours it is supposed to remove heavy metals which affect your kidneys

It did, it increased my creatinine


TCM

In renal treatment, I consider TCM are the most dangerous lot.

Firstly their medicine are invasive.Once you swallow, there is no antidote I suspect most of them contain steroids or strong doses of something to temporary suppress the creatinine. I have yet to see on the wall of a TCM, a lab analysis of their drugs.But people will still use them.In one case this patient was on creatinine of 600 but within a month, the creatinine went up to 1200.

Most of these herbal drinks are bulky and difficulty to handle, not to mention drink. The variety of combinations consisting of plants and ginger or what is too much to list here

In the internet there is a hospital in China.I won’t give you their name or be sued but I will call them TCM hospital.

In the internet they advertise under a variety of name and it will be hard to miss their many websites.

I do not know what are trying to achieve in the world of Nephrology.

Their daily treatment is simple:


1. The environment is like a hospital.

2. Their building is like a hospital

3. The place is clean and the nurses are professional

4. The procedure:

After breakfast and blood pressure tests,two heated pads with TCM are placed underneath your kidneys for say two hours this process is called osmosis. In between, a big team of doctors come in your room for their ward visit.They don’t show you any results but just exchange greeting before going to the next ward.

After the pads, comes colon cleansing where they insert herbal medicine into your anus.But unlike colon cleaning, the herbal potion stays in your anus for 45 mins...horrible
Then you enjoy 45 mins of herbal foot bath.

The procedure is repeated after lunch.

But every alternative days you are taken into the basement where there is a clean room with a herbal bath and you are soaked in to bath up to the neck for an hour

One is told that you need to stay at the TCM Hospital for 22 days.TCM don’t have immediate results and so it takes time like 22 days.In my case after 15 days I left as there was totally no result

The worst part about staying at TCM Hospital is you are watched from morning tonight and allowed only once a week to do shopping.I do not know how to cook and how the hell can I eat the right food if I want to use food as a supplement for the treatment

The estimated costs for the stay is usd25,000.

It used to have patients from USA, Australia and Europe but I think most of them were disappointed and so now they get people from countries with poor knowledge of nephrology like Ghana, Fiji, India, Pakistan Malaysia, and South America

Here is my criticism:

This a hospital which does not tell you what is in the herbs
They don’t have any scientific way of monitoring your progress. Only the blood tests tells you something.
They send the patients with high creatinine for dialysis at their centre.
One chap from Nepal sold his family land just to get the treatment.and dialysis.
But he thinks that he is being cured because the creatinine drops
I feel sorry for him because it a very expensive way to get dialysis

This hospital want to go international but what are they selling?? Nothing seems to work


STEM CELLS

Of course like every institution for profit, they will ask you to inject stem cells

But they can tell you what cells are these?
Where is the scientific analysis?

Some of the companies in China and elsewhere are so aggressive with the stem cells that it can costs you usd25,000 for a dose.

I  had 150,000 million placenta  cells injected for usd22,500. All I got back so far was constant erection and to make it more miserable, my wife is already in menopause……….


please note the image shown is for illustration purposes only










WITCH DOCTORS, SPIRITUAL HEALERS AND SANDHUS FROM INDIA

If I would to write my experience here we will never finish this discussion paper. But I tried quite A FEW only to be frightened to death about I have to do.


I visit a Sandhu who claims to be an expert in body healing in Lahore because the guy in my condominium claimed that I would definitely be cured.Apart from having to perform about 30 rites like bathing in yoghurt,turning my furniture’s around the room, he claims that my kidney stopped working because many watches including antiques in my house had stopped and if I got them working then the blood will start flowing again in my body.Sounds logical but I did not do it


ACUPUNCTURE

Acupuncture is worth trying because it seems to work for some people but not for many.

A typical session last between 15 mins to 1 hour.Usually, up to forty needles are used.So don’t go if are afraid of needles.These needles are bigger then the needles that your medical doctor draw blood

What acupuncture does is that it wakes up the sleeping nerves and functions in various parts of your body and coordination becomes more efficient.It will never cure anything .Your body is the greatest curer of your medical condition and once the coordination becomes efficient, your health especially oxygen flow improves.

I did it for three years I did not think it helped me fast enough and so I supplement it with qikong.Qikong  is deep breathing exercise again design to stimulate blood flow. In addition it actually provides exercise and loosens up every limb and muscle of your body.

If you are over 65, qikong is a greater reliever of aches and pains that visits you unexpectedly every morning.

I spent about usd10,000 in Beijing for training in Qikong  for advanced classes but then I had to stop because I was looking for cure for my kidney and not aches and pains


TRANSPLANT (the beginning)

Finally the great day came as my creatinine started to jump exponentially by almost 75 to 100 points every three weeks.I still had no cure, no help

My strategy was to have the transplant before I go for dialysis.My country was about to pass a law in parliament upping the punishment for those who participate in the illegal transplant trade.The penalty was one million fine and twenty years jail. The urgency was there

Lucky for me the parliament had bigger issues to handle and the enactment was postponed


DIALYSIS

Naturally because of the law, I had terrible time to search for a transplant.

Hence whilst waiting I opted for dialysis.

Dialysis is not cheap if you don’t have health insurance.

Dialysis is painful, takes too long.

Lying in bed for four hours is too long

I had to lie still because if I moved too much, the alarm will go off

Dialysis stops your kidneys from working and hence you will stop from urinating naturally.So fluid intake is severely restricted to about 500mls daily. I suffer from intolerable thirst every hour every day.There is no cheating because if you drink secretly, your weight will increase and more fluid will have to be removed.

In a single pump machine, sometimes only one kg weight of water is removed after four hours.The double pump machines are better but your body has to have the heart and capacity to take the fast blood flow.More fluids can be removed if your heart and body can take it

Even if you can take it, you will suffer from cramps.Sometimes the body is still cramping the morning after because of the fast fluid removal.’

Blood loss into the machine is common.Apart from that the kidneys are now incapable of producing hemoglobin and so the doctors will recommend you to use 2000mg of a drug called recormon.So apart from the cost of dialysis, I had to pay usd50 to buy the supplement thus making the cost of dialysis expensive.

If during the dialysis, the blood pressure becomes uncontrollable low, then I have to fork out usd50 to buy a bottle of  albumen and up to minimum of  three bottles is required for each session

Sometimes in inserting the prick  needle is inaccurate and blood flows into the meaty part of the arm and the arm becomes blueblack

After 25 sessions, I decide that only a transplant would work or I will commit suicide due to the inconvenience, the pain  and length of each dialysis session


TRANSPLANT

What goes on in the transplant UNOFFICIAL market is a totally world by itself.However it is not so violent or convoluted as the drug market.It is safe to go in to explore or even get a transplant but be CAREFUL mostly of conmen and being played out
The players in this market consist of 

1. The procurers.

Surprisingly it involves some nephrologists.
For the sake of the profession I must qualify that a very very small number are involved. Many nephrologists have enough patients to look after that they are not interest in procurement.
However by going through a Nephro the costs is definitely very high because the fees is spiked for their share.The spiked costs is usually usd50,000 to70,000 per patient.

2. The agents.

They are the mainstay of this industry.Most of them are badly educated especially medically. They don’t bother to learn how to read blood tests report except the line for  creatinine. They know nuts about matching blood tissues. They are in this line because the work is easy and the money is good.
In this industry, you will need to hand over the entire fees of up to usd150,000 to the agents bank accounts before the transplant procedures starts.Imagine if you don’t get it back, which happens in many cases
The agent either gets his contacts from the Nephrologists, recommendations from previous customers, or squatting around the waiting hall of a busy Nephro clinic.It surprises me that because most clinics are busy, many Nephros always in their consulting rooms and  are unaware that the medical offices are being used by the agents for recruitment

3. The hospital staff at the hospital.

There are many types of hospitals in China, the foreign owned, the local owned, the military and the government owned and charitable hospitals. Only one type has the power to be able to handle the transplant openly but I can’t reveal which type
Usually, one of the junior doctors will act as the coordinator between the agent and the hospital. No one gets to meet or see the final surgeons who will perform the operation and receive the main bulk of the fees
The most dangerous and risky are the locally owned surgeries. These are makeshift and sparsely equipped surgeries with two operating theatres, ICU and recovery room of some sort and can be dismantled once there is a potential raid by the Chinese authorities.  These surgeries are located slightly out of town in some shops or unused warehouses. In some cases it is so makeshift that there is no heater of running hot water except for the medical staff.
Only you and one relative can be transported to the surgery and you are being blindfolded for a long part of the journey to prevent recognition of the location of the surgery
In some places, these facilities can cater for up to three or four operations in one day.

And so after three days and say average 10 transplants, they either shift or close it for two weeks before the next batch come in or a new one set up nearby
Contrary to rumors, the Chinese authorities are very strict about theiranti-transplantlaws. I was tailed for 5 days and 4 nights upon being a suspect but I was very lucky because I did not do the transplant as my agent made off with my money three days  earlier.

China is a big country and due to the practice of keeping your mouth shut carried from the communist days, it is almost impossible to get info.This is the frustration of the police.
To be caught, one has to be in action and only several very well known Nephrologists are in jail for eight years for illegal trade practice having being caught in action. That’s why, you don’t get to see the doctors before and after the operation

The deterrents are not enough to slowdown the kidney transplant as the business is still very rampant and lucrative.This is because cadaveric kidneys are in great supply after each festival like Chinese New Year due to accidents on the road and so there is a good supply of healthy kidneys, if you want to know whentheseason starts, check the Chinese holiday calenders. At one stage the supply was even more with the execution of members of a Fa Lung Gong sect
I was told now that some syndicates are planning to sell prepacked for shipping kidneys to sell so that the anti organ trade laws can be by passed and the  patients can get a local surgeon to fix it themselves

The initial procedures
The procedure for initial treatment is the same for every hospital. It starts off with blood tests,  which includes tissue typing tests. Then ultra sound, then chest  X. Some hospital insist on stomach scope, iliac artery x-ray. Then there is the normal ecg.
Although the hospitals are hugh..blocks of 30 storeys, jammed to the brim, one can pick up the results by 3 pm. Such efficiency

In case you have doubt, every equipment is imported and branded.Even though China produces their own dialysis machine,100% of their equipment are imported. From what I know, most hospital are supposed to financially self sustaining and hence the need to provide the best equipment
In the crowded environment like this, inevitably mixed up do occur.

In my case, I was called into the medical surgeon’s office who informed me that I was a rejected candidate because I have an advanced case of pancreatic and abdominal cancer.

I rushed home and after spending usd5000 for scopes, I am still alive and with NO cancer.Apparently my blood specie was mixed with another person. The poor person with the cancer probably has died after being told he was healthy based on my tests results.

Here is where the agents make their first cut. They their claims for fees are three times the cost they pay

After the tests are done, the junior doctor takes over and the role of the agent is just to hang around with you.That’s why I say it is a damn good job, because he will stay in the same luxury hotel and eat those delicious 5 star food as you do and you pay for these including many times, for their wine intake.


The Con

With the hugh sums of funds, the loose control, lack of documentation and contracts, it is obvious that some people must be able to make a quick buck.

I started my search two years back and suffered from some setbacks.But because I am well educated and have strong connections,my losses were less than others. Nevertheless I shall describe the plight of some severe cases as well

1 Con 1

Many of the agents are gambling addicts or have debts. So as soon as they receive the upfront money, they disappear with ALL the money.

Not only the patients does not know, but the patients is told the doctors are still waiting for a suitable match.

Many of the patients have mortgage their assets and have no chance of getting another agent.

Right now there this lady who has stayed at Guangzhou for a year vainly in hope of getting a match. The agent keeps telling her that they still have not found a donor kidney .In realty the agent went to Macau nearby and lost her funds

1 Con 2

Many agents are happy to nibble away from your deposit and stay in this profession.
So they tell you after each tests that they can’tfind a match and charges you everything theycan.
The net proceeds are returned back.
In my case, I was lucky to get the money back within 24 hours because the agent knew that the police were in the hotel tailing us

Otherwise, the deposit will be paid back by installments of years
3 Initially the agent will makes the fees attractive  say usd120,0000 for the entire operation.

As soon as the agent has received confirmation of a match, the fee is raised to usd150,000.There are a million excuses but the best one to frighten you is to tell you that in the first week, you will need 4 strong one time anti rejection injection and it costs you extra  usd20,000.
This extra fee is concocted by the junior go between doctor and shared with the agent. Like the main fees, the fees have to be paid upfront
It is important to talk to as many patients as possible for names of ethical agents and unethical agents before engaging them.Unfortunately naiveness and urgency often blur discretion

Visas.

Foreigners are not allowed to use Chinese hospitals.

So fees have to be paid for a forged visa with a forged name.Thereafter,all facilities are available but still you must look a Chinese native. This accounts as to why there is an absence of colored people that go to China for transplant.
These visas are very expensive to get but such visa can be obtained within 24 hours. Here again there is an offence in case one gets caught

Going outside China.

Due to international outcry and the very strict penalties for getting caught, Chinese doctors have to find alternatives to help patients.

So they now work outside China.Many countries will welcome them…why?
Most countries do not have urologists with any experience.But their citizens are dying by the dozens. Their dialysis are overcrowdedand due to unhygienic practice… infected.
Another factor that makes these places attractive is that they have a good supply of live kidneys
So now at least one country have kept their eyes closed and make fair  offer deals to both doctors and patients.

The Chinese doctor team performs 10 operations during weekends or after office hours.Three out of the 10 patients will be supplied by the local government .Here the local government will take its share and request the China doctors to carry out the operations are performed for a fee.The local hospital keeps the fees for their administration costs.

The Chinese team finds their own required seven patients to make it ten patients. They will also  pay  rental for use of the operating theatres  for the three days use of ALL facilities and train the local cardiologists, urologists, the anesthetics,transplant coordinators etc.The hospital will provide full complement of pre and post operating nursing staff. Up to thirty nursing staffare given on the spot training at each session

For quality audit, there is even a medical panel provided by the hospitable to screen out unsuitable patients and I was surprised at the very strict screening and patients being rejected being carried out

At this moment, I have gone over the stage of being conned, I have found proper institutions’ have found direct contact with the doctors and can bypass the agents  but I have not carried out the transplant.This is because I am afraid of the consequences of the provisions of the anti trading organ ACT.If I am caught, I would spent twenty years in jail with a good kidney but with dialysis, which I dread I can live another 8 years in freedom

My appeal to the governments of the world.

My case with the kidneys is not the only reason that I am making my case.It applies to liver and many organs

DON’T be irresponsible and lazy with your responsibility to your citizens. Allow transplant between unrelated persons
By copying the USA law banning the sale of organs, you have only made more suffering for the poor.
The rich can circumvent your laws with the money they have but the poor can only rely on dialysis.

The poor can still get transplant as some employers will assist or some organisations will contribute if the costs is not exhorbitant like what it is now.

On the illegal market, a transplant can costs up to usd125,000 minimum

Often they go to the free or subsidized centers which uses second machines and the filters over and over again hence exposing them to hepatitis and aids

By confining a person to the machines, the economy looses an effective worker..

Further governments, for example should to get together and make a joint contribution to a fund to research and search for a solution for shorter time spent in dialysis.If you can invent the dialysis machine, then you should be able to invent the artificial kidney.

They manage to shrink the computer into the size of a lap top. So why can’t  you do it for dialysis so that charges and handling can be reduced immensely

Regarding the law, maybe a honest and fair organization can be created in each country to control; the trade and use the proceeds to fast forward the perfection of the artificial kidneys.I know that research are being done for an artificial kidney but they final costs will not be cheap because the research is commercially funded..

Maybe for a start, create kidney institute  in your country so that research and development can be concentrated in one centre..


Thank you

(please note some facts were rearranged for this article)

If you want to know more or have an opinion to send to me , please write to : jimmylim3993@yahoo.com

Remember the opinion I have given are based on my experience and I am not a qualified or trained nephrologist or a TCM expert