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Author Topic: The loneliness of young kidney patients  (Read 1509 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: January 19, 2009, 11:27:54 AM »

The loneliness of young kidney patients
   
Even as they fight for their lives, many teens with renal failure have to grapple with not having their loved ones around them.

As he sits on a bench in the Children’s Hospital No. 2, Nguyen Van Manh, 15, is the picture of loneliness.

His ailment requires that he undergoes dialysis three times a week, an expensive procedure that his poor family cannot afford. They are also so busy making ends meet and earning money for his treatment that they have no time to tend to him.

Manh is by himself as he eats, drinks, washes his clothes and buys medicines. He has to depend on charity often for his meals, with benefactors occasionally giving him some money to buy food. He has been in the hospital alone for several years.

As the feelings of missing home, parents and brothers rise up, he can do nothing but cry.

“Poor him! He just stays in the hospital alone. His parents come to visit him only when his illness becomes serious or when he is given emergency treatment,” say the relatives of other patients.

Manh’s struggle is reflected in different ways at the hospital where many teenagers and younger children with kidney diseases are locked in a frequently hopeless fight against their fates.

There are 30 young patients with kidney diseases in the final stages at the hospital who are being provided kidney dialysis. Most of them belong to families with financial difficulties in other provinces.

For many patients there, the VND900,000 (US$52) needed to pay the monthly bill for food is too steep, and like Manh, they have to rely on charity meals.

Kidney failure also means that the patients have to accept to live with kidney support machines, another giant expense beyond most families.

The fee for one kidney dialysis is about VND300,000 ($17). A patient has to take the treatment three times a week. The expense is estimated about VND3.6 million ($206) a month and near $2,472 a year.

Many families are rendered destitute as they try to earn as much money as possible for the treatment of their children.

There are quite a few instances where a family has broken up under the strain.

The father of 11-year-old Nguyen Hoang Bi, diagnosed with chronic kidney failure in southern Kien Giang Province, left home without a word.

His mother had to borrow money and mortgage her land and house to get VND20 million ($1,144) to pay for hospital fees. Short of money for food, she asks for charity meals often.

Like Manh, Dang Viet Trieu from southern Kien Giang Province, can get no care from his parents because they must work to earn money for his treatment. They’ve even had to borrow over VND40 million ($2,288) to pay his hospital fees.

The illness is at the final stage for 14-year-old Tran Thi Men from southern Ben Tre Province. She has a bloated stomach like a heavily pregnant woman. She needs help from relatives for the simplest of tasks like lying down and moving. Her mother works hard to pay the hospital fees, and her stepfather has mortgaged his motorbike. He has also had to sell the “gratitude house” given by the government for war veterans.

Pham Quoc Canh, 12, from Long An Province shares the same fate with his peers in the hospital.

Canh’s father died years ago while his mother has to work as a home maid or temporary laborer to afford living expenses and his treatment. There are weeks that he has to undergo dialysis four times and now his heart suffers failures too. The hospital has been his home for more than two years.

According to the Ministry of Health, Vietnam has 5,000-6,000 people suffering chronic kidney failures in the final stage who are in critical need of kidney transplants.

Silver lining

Amidst the pall of gloom, caring staff of the hospital do their best to provide some cheer and encouragement.

“The nursing staff here are very interested in babies and teenagers. They teach children to write letters and draw pictures and give them marks,” says one parent.

Their interest greatly helps the patients.

Knowing patients have to stay in the hospital during the coming Tet holidays, the staff have prepared gifts for them. Each gift is a warm coat and a handbag.

Phan Thi Cam Linh, a staff of the hospital, says, “I chose to give those things to children because many of them just wore thin coats when they arrived and had lost all their belongings.”

For patients with serious kidney diseases, a day alive means a day of hope.

Manh says, “I have a wish that patients with kidney failure get over their illness. I think about the blue sky and beams of sunshine in the morning. A morning is a hope.”

Source: Tuoi Tre
 
Story from Thanh Nien News
Published: 20 January, 2009, 02:11:19 (GMT+7)
Copyright Thanh Nien News

http://www.thanhniennews.com/features/?catid=10&newsid=45558
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile

« Reply #1 on: January 19, 2009, 04:42:00 PM »

So sad.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Roxanne610
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I just dont know anymore!!!

« Reply #2 on: January 19, 2009, 06:42:58 PM »

Just terrible what some poor kids have to go through...Its not fair
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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
G-Ma
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« Reply #3 on: January 19, 2009, 08:47:11 PM »

Very sad.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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