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Author Topic: Donors failing tests & fistula in broken arm?  (Read 3090 times)
Lis
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« on: May 07, 2015, 05:54:54 PM »

Hi there,
Last posted in December 2014.  Since that time, I have had a total of five potential donors go through the process, none of whom have passed the tests at UCSF Medical Center. My brother, my husband, my hairdresser (she almost made it but her blood pressure suddenly went up during the testing), and a married couple (friends) all tried.  Part of the issue is that all my cohorts who are considering it are in their fifties at least, and it seems hard to have the perfect bill of health at our age. Plus I had to have a bunch of tests too. So now I am going to take a break from the donor roller coaster for awhile.  Back to seriously trying to figure out which type of dialysis to do.  The other thing is I tripped and fell a month ago and managed to break my arm. Had to have surgery on it and a brand new titanium elbow put in.  The PT is really tough. And it's my non-dominant arm which I just had vein mapped for a fistula before I broke it. I have a five inch surgical scar on that arm now and it's far from healed, still needs lots of PT.  I am wondering if it's a good idea to inflict yet more trauma on that arm or just accept that I should have the fistula put in my right/dominant arm.  Which will make it harder for me to to do my own home HD with my non-dominant arm.  I have appointments next week to see both neph and ortho surgeon, so will discuss with them. But just wondering if anyone has had experience with something similar. Thank you.
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Lis
Diagnosed with PKD 2013
Stage 5 ESRD, GFR of 7
Fistula created July 2015
Angioplasty on fistula Jan 2016
Transposition on fistula April 2016
Started training for home hemodialysis July 2016
Started home hemodialysis August 2016
Had five donors try but didn't pass
On waiting list at UCSF
PaulBC
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« Reply #1 on: May 07, 2015, 06:12:14 PM »

I have no idea, but how long do you think it will take to heal? Shouldn't it just be a couple of months? I'm not sure that should affect your decision.

Sorry to hear your donors haven't worked out. I read an article that most Americans don't qualify for health reasons. I am in the middle of a donor workup for my daughter, and all is good so far, but I'm also middle age. I'm also in the Bay Area, but near Stanford, not UCSF.
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Lis
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« Reply #2 on: May 08, 2015, 10:27:13 AM »

Oh, I haven't heard the bit about most Americans not qualifying because of health reasons, but that makes sense especially when they get older, as most of my family and friends are.  My daughter (28) offered but I said no. She went and got tested anyway and found out she has PKD also.  Good she found out while she is young I guess.  Children of parents with PKD have a 50% chance of inheriting it.  Anyway, I have had three years to prepare myself mentally for dialysis but I am still just as confused as ever about which method to use.  Need to decide soon though.
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Lis
Diagnosed with PKD 2013
Stage 5 ESRD, GFR of 7
Fistula created July 2015
Angioplasty on fistula Jan 2016
Transposition on fistula April 2016
Started training for home hemodialysis July 2016
Started home hemodialysis August 2016
Had five donors try but didn't pass
On waiting list at UCSF
PaulBC
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Posts: 205


« Reply #3 on: May 08, 2015, 11:10:20 AM »

Oh, I haven't heard the bit about most Americans not qualifying because of health reasons,

Looked it up again. It should be easy to find a link to the original:

Most in U.S. Aren't Suitable Kidney Donors: Study
Health or financial reasons disqualify more than 75 percent, researchers report

WebMD News from HealthDay
By Kathleen Doheny

FRIDAY, Nov. 14, 2014 (HealthDay News) -- Even if they were willing, most people in the United States aren't qualified to be kidney donors because of health or financial reasons, a new study has found.

More than 75 percent of the population could not donate, said Dr. Anthony Bleyer, a nephrologist at Wake Forest School of Medicine, who led the study. It is to be presented Friday at the American Society of Nephrology meeting in Philadelphia.

While the national kidney shortage has been well-documented, Bleyer noted, to his knowledge, there have been no population-based studies to look at the potential donor pool.

According to the National Kidney Foundation, about 100,000 people in the United States are now waiting for a kidney transplant. In 2013, there were almost 17,000 kidney transplants, including almost 6,000 from living donors.

To determine what percent of the U.S. population would qualify as donors, Bleyer said, "we modeled it after what a transplant center would take."

He used the National Health and Nutrition Examination Survey (NHANES), a large survey of people between 21 and 70 years old, and looked at health conditions to calculate how many would be eligible donors.

Among those disqualified were those who were obese, those who were excessive drinkers (more than four drinks a day), and those with diabetes, skin cancer, high blood pressure, HIV, coronary artery disease or congestive heart failure.

Bleyer then disqualified those with an annual family income of less than $25,000, the U.S. poverty level, reasoning they could not afford to miss work for the two to three weeks required for recovery after donation. And he ruled out non-U.S. citizens, reasoning that their follow-up care could not be assured.

His findings showed that, based on preventable health conditions, 55 percent could not donate. Adding in low-income and non-citizens increased the percentage to more than 68. And when he excluded smokers and those with shortness of breath walking up an incline (figuring they were not in good health), it rose to more than 75 percent.

"I think the take-home message is, as a population, the healthier we are, the better we would be able to deal with many health problems, and the more donors there would be," Bleyer said.

A spokesperson for the National Kidney Foundation who reviewed the findings pointed out that the study does have one limitation.

"They are looking at people from 21 to 70," said Dr. Leslie Spry, who is also a nephrologist in Lincoln, Neb. Most of the best donors are ages 21 to 55, he noted, and if the researchers had focused on that smaller age group, the percent of qualified donors would surely increase.

"It is a good, thought-provoking study," said Dr. Stephen Rayhill, director of transplant clinical services at the University of Washington, adding that the findings did not surprise him.

However, he noted, as the population gets less healthy, fewer are eligible as donors. But that also means more of those people may end up on the recipient list.

Rayhill also noted that more than half of all kidney transplants are a result of blood pressure problems or diabetes.

Research presented at scientific meetings should be viewed as preliminary until published in a peer-reviewed medical journal.
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Lis
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« Reply #4 on: May 08, 2015, 04:51:15 PM »

 Well, that is very interesting.  Given that most people I know are over worked, stressed out and find it hard to put their health and self care first, I am not surprised. Thanks for the info. 
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Lis
Diagnosed with PKD 2013
Stage 5 ESRD, GFR of 7
Fistula created July 2015
Angioplasty on fistula Jan 2016
Transposition on fistula April 2016
Started training for home hemodialysis July 2016
Started home hemodialysis August 2016
Had five donors try but didn't pass
On waiting list at UCSF
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