I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: CatonTheRoof on June 16, 2016, 03:37:36 PM
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I have been 5 years on the waiting list. Time during I have been mostly on peritoneal dialysis. Today, my nephrologist told me to pray and hope I can get a kidney soon, as she thinks sooner or later I will need either the surgery or to change to hemodialysis (which I would not like to say the least) I'm Colombian and I know people usually have are wary of my country which I don't blame them for. Nevertheless, anything I can do to increase my possibilities would make me happy. If I can find a webpage/message board where there's some kind of help of this kind I would be grateful!
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I know nothing about this subject, but a search turned up these links:
http://www.irodat.org/
http://www.transplant-observatory.org/Pages/home.aspx
It's a start.
Are you in Colombia? or just from Colombia? Surely, there must be something in your own country.
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Hemodialysis is not fun, but it is not that bad. Just get the surgery now so your fistula has time to mature.
In your country do they have a waiting list for kidneys? What is the process?
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Thanks for the links.
I'm from Colombia and in Colombia. If anyone of you knows anything about those medical trials soon to start involving different new methods of renal replacement (either via 3rd printer, or artificial kidney) don't hesitate in sharing with me. I wouldn't mnd to volunteer :bow;
I'm 26 years old and have been on the waiting list for four years. Sadly, it seems there's corruption and many of the transplants end up going to the highest international bidder. We specially seem to have many people from Israel comng and buying their way out of dialysis. Coincidentally, today a new law was approved by which all people that die are forced to give away their organs for transplants if these are healthy. Unless he has let a notarized paper while in life certifying he doesnt want to shrre his organs once dead. In recent times the number of patients waiting for a transplant has increased, while the numbers of donors has decreased. Living donation that aren't between family members are very few; recipients feel afraid of being blackmailed by donors once they have their health. Donors feel afraid in general (they think this increases their probabilities of dying)
Not to mention that my christianity is a bg deal in my country for both good and bad. Families think donating their relatives organs is amoral.
With the new law now, relatives can no longer oppose to the organs being taken away and donated. I truly pray and hope this will end up helping me find a brand new and beautiful kidney.
Also, I'm planning on registering myself in another smaller city. Appareantly number of cadaveric donors is much higher there (people are into bike) and the population is much less. I'm going there next month to find out.
Regarding hemodialysis... I truly don't know the standards in the US or Europe, but I suppose they are better than here. Here Fresenius treats patients as cattle. Before I started peritoneal dialysis I was in Hemo for 4 months with a temporal catheter (my kidneys failed abruptly) Besides feeling sick and suffering migraines after every single session, I had to stand by seeing people diying a couple of times. The continuos beeps of the machines, the white hospital lights, even the choice of tv programming they put to the patients! all that sucked so much. I know that you guys there in the US have nextstage (or whatever its name is) I guess that's totally a different experience. But here it is simply not available.
This is why I pray it doesn't have to come to that!
I thank you all for your interest. I would be thankful as well if in case you believe in prayer, you include me in yours next time around. I'll do the same for you :bestwishes;
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Although the transplant scene sounds awful where you are, it's no great shakes here in the US either. Less corrupt, perhaps, but just as fierce a competition for few viable organs for many who need them. Could you move to a "better" country? I know there are some countries in Latin America, e.g. Costa Rica, that are fairly enlightened medically. And seem less corrupt--at least to an outsider's view. I know nothing of the kidney scene there.
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Sorry I don't know about international donation sites. Like you experience with your Israel patient examples most of the travel for donation schemes seem of questionable morals and I worry about the quality of those transplants. Here in the US the main payer of dialysis expenses the government program Medicare will not service transplants from non approved faculties, likely to try to stop travel transplants and the associated problems.
Coincidentally, today a new law was approved by which all people that die are forced to give away their organs for transplants if these are healthy. Unless he has let a notarized paper while in life certifying he doesnt want to shrre his organs once dead. In recent times the number of patients waiting for a transplant has increased, while the numbers of donors has decreased. Living donation that aren't between family members are very few; recipients feel afraid of being blackmailed by donors once they have their health. Donors feel afraid in general (they think this increases their probabilities of dying)
Not to mention that my christianity is a bg deal in my country for both good and bad. Families think donating their relatives organs is amoral.
With the new law now, relatives can no longer oppose to the organs being taken away and donated. I truly pray and hope this will end up helping me find a brand new and beautiful kidney.
The law change sounds positive and that should result in a huge increase in organs.
Also, I'm planning on registering myself in another smaller city. Appareantly number of cadaveric donors is much higher there (people are into bike) and the population is much less. I'm going there next month to find out.
Here in the US people will do the same. In my center a few weeks ago someone received a transplant at a hospital about three hours way in a different zone. I heard he was on the list for six years. We also see that some hospitals in the same zone transplant more organs, they might have better process or be willing to take more risks. In my zone John Hopkins University advertises much shorter waiting times. I've been willing to wait because I don't want my wife to have to move to near the hospital for an extended period of time should I have problems.
If my health goes downhill I will consider being listed in a different hospital or zone.
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Regarding hemodialysis... I truly don't know the standards in the US or Europe, but I suppose they are better than here. Here Fresenius treats patients as cattle. Before I started peritoneal dialysis I was in Hemo for 4 months with a temporal catheter (my kidneys failed abruptly) Besides feeling sick and suffering migraines after every single session, I had to stand by seeing people diying a couple of times. The continuos beeps of the machines, the white hospital lights, even the choice of tv programming they put to the patients! all that sucked so much. I know that you guys there in the US have nextstage (or whatever its name is) I guess that's totally a different experience. But here it is simply not available.
This is why I pray it doesn't have to come to that!
I traveled a lot and have received dialysis treatments around the world, Chile, Argentina, South Africa, Canada, South Africa, Singapore, etc... mostly at Fresenius centers. I've found that the dialysis treatments is similar to home at all the centers. There will be differences in the machines, and more employees working at non US Centers. (My US center is not Fresenius, instead its DaVita which is one of the largest US center chains.) So what I'm saying although nextstage is not available to you I think you will find that there are a lot of people who are living long lives on dialysis in centers similar to what you experienced. Its not the best environment but it works.
Should you need to go on hemodialysis I hope you can learn how to make the treatments easier on your body. Websites like this one help to inform you so you can take over some of the control of your treatment. Some of the side effects you list,feeling sick and suffering migraines, might be something that can be minimized by you.
Also maybe a different dialysis shift would get you around healthier people? I do an afternoon 3-7 shift and mostly people who work are on my sift, they seem generally stable and there are not many health emergencies. Earlier shifts have more elderly and sicker patients and when I'm temporally on one of those shifts I see more people pass out and scare the staff.