Hello from Jakarta, Indonesia

[rosa sihombing]

 

Hi everyone,

Glad to find this site, because, well, it's way better to be the others who have the same condition, to share feelings and experience to make us stronger to face this disease.

I'm Rosa, going to 31 this April and a transplant since July 2004. I'm not sure the cause of my renal failure. But when I was 12, the doctor once suggested my parents to check my kidneys' condition with biopsy but they ignored. I had my first dialysis in September 2001, had kidney transplantation from China in July 2004 and found out that I'm infected with hepatitis B and C on April 2006 *it was such a horrible 26th birthday gift for me*. So far, I am good and I would like to share with everyone who has the exact condition with me. 

[rsudock]

hello and welcome! i am interested in hearing more about your china transplant experience.

[greg10]

Hi Rosa, Welcome to the forum.

I am sorry to hear about your poor result with the kidney transplant from China.  Are there no donors in Indonesia? which I believe has the largest population in South East Asia.  Is it a religious belief that prevents transplant donations?  Perhaps you can be an advocate for transplant reform in your country.

Thanks for posting.

[rosa sihombing]

hello and welcome! i am interested in hearing more about your china transplant experience.

Hello

Well, at first, my parents desired to donor theirs but the result of crossmatch didn't allow any of them to give their kidney.

My parents then decided to bring me to China, accompanied by father of one patient who went there a year before. He helped us to communicate with the doctor since none of us is able to speak Chinese.

Since my blood type is O, it took a while to have the new kidney. I should wait 4 weeks, while my other friend only 5 days since hers is AB.

At first, there was problem, I couldn't pee but thanks God, the doctor's team found out the cause and fix it.

I don't know even who my donor was, whether he or she, dead or alive but the kidney really gives me new life. Well, if you have other questions, don't be hesitate to ask me ;p

[rosa sihombing]

Hi Rosa, Welcome to the forum.

I am sorry to hear about your poor result with the kidney transplant from China.  Are there no donors in Indonesia? which I believe has the largest population in South East Asia.  Is it a religious belief that prevents transplant donations?  Perhaps you can be an advocate for transplant reform in your country.

Thanks for posting.

Hello Greg,

Oh well, it's okay with my hepatitis. I mean, as a dialysis patient and now kidney resipient, that disease is inevitable since we have a lot of medicine intake, blood transfusion and dialysis process itself. I don't know exactly where they're from but so far, they don't disturb my new kidney.

Answering to your question, I could only say that finding donor is too difficult. We're not socialized with kidney donoring so many are still afraid to donor theirs because they don't know that they still can live healthy with one kidney after being the donor.

[rsudock]

hello Rosa i admire how brave you are to travel to a foreign country where you are not fluent in the language and get a major medical procedure. what trust you put in those docs...

I don't want to sound morbid but i was watching a documentary about the transplant market in china and it said they get the organs from executed prisoners....what do you feel about that? Did the docs mention that?

xo,
R

[Rerun]

Hello Rosa and welcome to IHD.  You write very good English for it not being your first language.  I hope you like this site.  We are glad you joined us.

Rerun, Moderator   

[galvo]

G'day, Rosa, and  .

[RichardMEL]

Selamat Siang Rosa & Welcome to IHD,

OK I will quit with the Indonesian, it's been nearly 30 years since I studied it at school for a couple of years

I think you might be one of the  few members here who is the result of transplant tourism. I won't ask how much the kidney cost your family to procure in China, but that would obviously have been an element to it. I think the fact that you received a kidney that had Hep B/C is unfortunate underlining of just some of the risks of this kind of thing.

Having written that I am glad it is working well for you after six+ years - that's a great result and I guess validates the effort to get it - hopefully it will last much longer.

I think you will have some unique insights to offer our community with your experiences. Thanks for joining!!

 

RichardMEL, Moderator

[monrein]

  to IHD.

[rosa sihombing]

hello Rosa i admire how brave you are to travel to a foreign country where you are not fluent in the language and get a major medical procedure. what trust you put in those docs...

I don't want to sound morbid but i was watching a documentary about the transplant market in china and it said they get the organs from executed prisoners....what do you feel about that? Did the docs mention that?

xo,
R

I can understand your response to our decision of having the kidney transplant in China. We went after seeing the good result of other patient who was brought by his father there. It encouraged us to go.

Since it's too difficult to find donor in my country, a lot of Indonesians choose the way I did. Actually not only Indonesians, other nations also have transplant there. 

About the transplant market, I don't want to give any comment. Yes, it's said that the donors are executed prisoners, but honestly, I don't know anything about the identity of my donor...

[rosa sihombing]

Selamat Siang Rosa & Welcome to IHD,

OK I will quit with the Indonesian, it's been nearly 30 years since I studied it at school for a couple of years

I think you might be one of the  few members here who is the result of transplant tourism. I won't ask how much the kidney cost your family to procure in China, but that would obviously have been an element to it. I think the fact that you received a kidney that had Hep B/C is unfortunate underlining of just some of the risks of this kind of thing.

Having written that I am glad it is working well for you after six+ years - that's a great result and I guess validates the effort to get it - hopefully it will last much longer.

I think you will have some unique insights to offer our community with your experiences. Thanks for joining!!

 

RichardMEL, Moderator

Hello Richard,

Thanks for the reply. Congratulation for your new kidney! I know the great feeling you have now, been there too

The first thing I couldn't forget about the first 3 months is how happy I was to know that I'm able to pee a lot. Yes, it's a simple thing but meant a lot to me! I also went often to the toilet, once I counted, 24 times a day ;p

Well, don't hesitate to ask me anything, I would like to share all experiences I got almost 7 years ago. Oh, by the way, yes, sometimes we feel the kidney moves and it hurts, don't worry, it's okay!

[DrMoskowitz]

Hi Rosa,

I don't think I could have prevented your needing a kidney. But I can prevent 90% of kidney failure, specifically that caused by diabetes or high blood pressure. If it were generally known, then the few kidney patients left would have a much easier time getting a transplant. Details are at http://tinyurl.com/healthcrime.

Amazingly, none of the kidney doctors in any country wants to prevent dialysis, since they make all their money seeing dialysis and transplant patients. I've written to professional kidney societies, including the International Society of Nephrology, the global one, but they don't write back.

I now think the only way to get the message out is to go straight to the media--newspapers and TV stations. Dialysis and transplants are big in the US media lately. There was an expose recently about how bad some of the dialysis units are, how Medicare knows exactly who they are, but doesn't tell the patients. And every month, there's a new horror story with transplants. The Univ of Southern California just shut down its transplant program because it put a kidney into the wrong man.

Can you suggest a reporter in Indonesia who might be interested in this story of global nephrology greed?

Best of luck with your kidney. Long may it last! And congratulations for your courage in joining IHD, and writing about your experience. Kidney patients have so little power in such a vast, profit-hungry system that any resistance, especially joining IHD, is a mark of supreme courage. Dialysis patients especially are $100,000-a-year cash cows that live only a few years and then are quickly replaced.

Dave Moskowitz MD
GenoMed (www.genomed.com) 

[texasstyle]

The only thing that matters is that your here! Even as a care to a husband on dialysis it is hard in my normal to everyday life to find other people to talk to about this. Here I can. Welcome!

[greg10]

It seems inconceivable, but in 2002, there were only 8 kidney transplants in Indonesia with a population of 280 million.*

http://www.nationmaster.com/graph/hea_tra_kid-health-transplants-kidney

* This is not meant to judge Rosa in any way.  These were the facts and statistics at the approximate time that Rosa had her transplant in China.  We can only hope Rosa continue to do well and that some meaningful reform take place in Indonesia.

[paris]

Hi Rosa, we are so glad you joined this site.  Your story is very interesting and I am enjoying reading your posts.  We have two things in common - Dr. doesn't know why I have kidney disease and I don't know anything about my donor either.  So, we aren't really very different -- just got our kidneys from a different place.   I am glad you are doing well.  I hope your transplant last for years and years.   Like Texasstyle said "the only thing that matters is that you're here".   I look forward to getting to know more about you.   Welcome to IHD        And I am also impressed with your English, especially typing it out.   


paris, Moderator

[rosa sihombing]

It seems inconceivable, but in 2002, there were only 8 kidney transplants in Indonesia with a population of 280 million.*

http://www.nationmaster.com/graph/hea_tra_kid-health-transplants-kidney

* This is not meant to judge Rosa in any way.  These were the facts and statistics at the approximate time that Rosa had her transplant in China.  We can only hope Rosa continue to do well and that some meaningful reform take place in Indonesia.

Hi Greg,

I understand your curiousity. I think the data you've showed makes sense since in Indonesia, we don't do a lot of kidney transplant.

I am here just an ordinary patient, not health official or government staffs, so let say what I will explain to you is just from my own mind.

Lack of donors in our country makes a lot of dialysis patients decide to have kidney transplants abroad. It's acceptable if that article shows that there were only 8 kidney transplants in Indonesia.

The other reason is many Indonesian can't afford to have kidney transplant. Not just that, only several who are lucky enough to be able to be on dialysis. In my case, I should wait almost three years to go to China. It was such a miracle for my family to go there. We say it 'It's only by His grace!'. So I hope this helps you to understand

[rosa sihombing]

Hi Rosa, we are so glad you joined this site.  Your story is very interesting and I am enjoying reading your posts.  We have two things in common - Dr. doesn't know why I have kidney disease and I don't know anything about my donor either.  So, we aren't really very different -- just got our kidneys from a different place.   I am glad you are doing well.  I hope your transplant last for years and years.   Like Texasstyle said "the only thing that matters is that you're here".   I look forward to getting to know more about you.   Welcome to IHD        And I am also impressed with your English, especially typing it out.   


paris, Moderator

Enchantee, nice to know you too, Paris ;p

[Jean]

      to IHD. We are glad you found us.

[karrye]

Welcome  to IHD