r2i forum

Hello,

My situation: I came to US from India just like majority of people on this board in 2005. In 2006 I was diagnosed with a kind of kidney disease where kidneys will slowly lose its functionality and eventually fail. In some patients its aggressive where the kidneys fail rapidly, in some its slow process, in some lucky people they will never reach end stage in their life time. When I was diagnosed, my kidneys were at around 55% and luckily so far I could able to hold around 50%-55% all these years. Now it seems my kidneys again started to deteriorate. Once I reach end stage, obviously need to go on dialysis for rest of my life or go for kidney transplantation.

Family: Two kids, elder one in high school and younger one in middle school, wife is home maker.
Status: Filed 485 on EB2 with early 2009 PD, received EAD/AP but no green card yet.
Job: Working full time for a US company, kind of stable job..(they do have their own offshore offices back in Bangalore and Hyderabad).

Now what should you suggest?

1) Continue here, if kidneys fail eventually get on dialysis and look out for donors. (Not sure about process or timelines or money involved in this).
2) Move back to India for good and get settle where there is good hospital/doctors etc and look for donor.
3) Continue here in US, after reaching final stage, go to India for transplantation and return to US (hoping transplantation goes successful)
4) Other (none of the above)

Thanks for reading.

You must remain in US at all cost.

US has the best advanced health care infra.

Also the lack of hygiene/dust in India can be issue for you.

Good luck and my best wishes to you.

I sincerely pray for your good health.

3 of my knowns have had kidneys failed. It was gradual for all of them and complete failure happened over a period of 15+ yrs.

1st had kidney problems as a teenager and by the time she was 35yrs old, she was having dialysis twice a week. She lives at Delhi and has access to good hospitals. One fine day after 5~6yrs, with a rare stroke of luck, she received a phone call from the hospital that there was a donor matching kidney available and she needs to come to hospital within 2 hours to go through the operation! She had a successful operation and is doing fine now, however she is on life long medication and has some side effects. Though dialysis is not required now.

2nd too had a similar history i.e. kidney problems since teenage yrs and a complete failure by the time she is 35yrs. She was born and brought up in a small city in UP but has been living in Kenya with her husband after marriage. She came to Delhi and her mother donated the kidney. The transplant was successful. She stayed at Delhi for 3 months post operation and returned back to Kenya afterwards. Fortunately everything went find and she is ok now. Yes she is on life long medication and but doing ok.

3rd discovered kidney problems for the first time at around 40yrs of age and by the time she reached 50yrs of age, her both kidneys failed. She lives at Delhi. and goes through dialysis twice/ thrice (perhaps more) a week. She was on waiting list initially but never found one in time and slowly her situation deteriorated and grew side complications (hepatitis) and other things that has now made a kidney transfer impossible and hence she is now on a permanent thrice/ week dialysis. She is now 65yrs old and mostly needs a wheel chair to go out for dialysis. She has good access to nice hospitals and her own daughter and in law are doctors living in UK.

In UK there are extremely long wait lists for kidney donor etc. I think its a general rule everywhere that priority is given to youngest/ most needy recipients. Hence as dbs ji suggested the close relative donor option is the best option.

Not sure if it helps but just thought to share what I knew.

Further to Trafford's response, a friend in Delhi registered for a kidney transplant. He was also advised to be ready to go to hospital. His family used to keep a suitcase with clothes for himself and one attendant as well as medicines all the time. This included air travel at short notice. After a couple of years and two false starts he got a call to travel to Bombay. Airlines provide emergency seats for such cases.

He was lucky as the tissue matched him and no one above him in the queue. That was a couple of years back and he is doing quite well now.

Sorry to hear about your health. I pray and wish you good health and wish everything works out good for you. Amen !!

Thanks everyone for your responses and kind words. With so much expensive health care here in US, I don't think I can afford long term dialysis, transplantation and post-op expenses even with health insurance. Most importantly securing a donor. As Trafford said above, even in India also transplantation has become routine thing with good medical care, most probably I will be relocating to Bangalore. I don't know how long I can push my kidneys without the need of dialysis. If we decide to go back to India, then need look out for kids schooling, housing etc. Don't know what other surprises are stored for me. If I decide to come back to US after getting transplantation done in India, then whether my health permits post-op at the time or not...another big question. Lot of unknowns..!!

A few things which may be important:
1. Find the city where you will get best medical treatment. I am not sure but
I have a feeling Delhi and Chennai probably have best advanced medical infra
in India.
2. You will need support at least initially. So make sure some close relative
(parents/in-laws, bro/sis) are with you or near you.
3. Before deciding on city where you will relocate find out the the big
bottlenecks (for eg Bangalore horrible traffic, Chennai lack of hygiene etc)
and figure out what suits you best.
4. Be very very very careful about health after you r2i. Take no chances
at least for first 1-2 yrs. If I were in your shoes I would never eat out
even in a 5 star hotel at least in India.

I wish you good luck and my prayers are with you.

idlebrain;657826Thanks everyone for your responses and kind words. With so much expensive health care here in US, I don't think I can afford long term dialysis, transplantation and post-op expenses even with health insurance.....

Your health insurance should cover long-term dialysis and any necessary post-op assistance once you have met your annual deductible and out-of-pocket maximum. Please don't go by blanket statements that healthcare is in-affordable in US. Call your insurance company or work with your Doctor's office.

I am telling you from personal experience, insurance has covered multiple hospital stays (sometimes for as long as 3 to 4 months in a calendar year) and on-going feeding, breathing and home-care needs. Your state may also offer supplementary support (regardless of your income level). Talk to someone in local social services office, force them to assign you a social worker. Try to be part of local support groups, you can get a lot of information from there.

Good Luck!!

Actually I was also wondering why you needed to pay so much. Since I left US
many years back I have no idea about med insurance now.

But long back (12-13 yrs now) I underwent knee ACL surgery by
Dr Norman Scott ( the orthopedic surgeon of US Olympic basketball team) in NYC.
I paid total < 500$ from my pocket. My insurance coverage was really excellent. I have forgotten
but I am quiet sure I used to pay 70$ or so per month on premium(may be
my employer paid big amount I don't know).

US has the best med facility. So for critical cases US is the best choice.

But I completely agree with dixit. Explore all options in US.

r2i is difficult (I tell from personal experience).

So r2i should be considered if nothing works out in US IMO.