MEDIA - How do y'all feel about

…stories like this one, where dialysis- equals a “fate worse than death”, and transplant “saves lives”? The emphasis in bold is mine.

Apr. 05, 2010
Copyright © Las Vegas Review-Journal

Las Vegan with kidney failure endures search for organ donor

By PAUL HARASIM
LAS VEGAS REVIEW-JOURNAL

He has had more surgeries than birthdays, yet 27-year-old Doug Gold wants to go under the knife again.

So it goes when kidney failure leaves you on dialysis.

“I sure hope I can get another kidney transplant soon,” Gold said recently, trying to suppress a yawn as he sat tethered to a dialysis machine that slowly vacuumed his blood clean. "This really wears you out, and it gives me the cramps so bad. I have a tough time breathing. I don’t want to lose my strength for a transplant. I pray I can find a donor."

It is around 5 p.m. on a Wednesday, and Gold, a Wells Fargo banker who helps clients with their investments, shuts his eyes as he remembers how he ended up on dialysis three times a week, four or five hours at a time.

His cousin, he said, had come forward to donate a kidney to him in late 2008 at Cedars-Sinai Medical Center in Los Angeles.

They knew his first kidney from a transplant when Gold was 13 was wearing out quickly, “so we thought the new kidney would be a pre-emptive measure so I wouldn’t end up on dialysis.”

But serious complications arose during transplant surgery.

Not only did the kidney go to waste, Gold almost died.

“He was really bleeding out,” said Debbie Gold as she stood by her son in the DaVita 5 Star Dialysis Center in northwest Las Vegas. “He could have died.”

If there has been a constant in Doug Gold’s life that he wishes wasn’t there, it’s that it hasn’t been easy for the native Las Vegan to stay alive.

Upon his birth, he had to be immediately flown to UCLA for heart surgery. He spent nine of his first 12 months in the hospital.

“I never thought he’d make it to his first birthday,” Debbie Gold said of her son, whose father hasn’t been in his life since infancy.

Gold also was born with only one functioning kidney, and it was abnormally small. An inability to excrete toxins made him more susceptible to infections and left his bones brittle.

He’s already had one hip replaced, with another probably only months away.

At one point, doctors in Boston spent 20 hours “replumbing” his renal system, trying to ensure that his kidney, renal artery, renal vein and bladder worked together.

Debbie Gold would learn from doctors that her child suffered from Vater Syndrome, a rare association of birth defects that can include physical problems with the vertebrae, heart, trachea, esophagus and renal system.

“My heart has ached for him as he’s undergone surgeries to stay alive,” said Debbie Gold.

Still, Doug Gold realizes he’s been lucky.

“Modern medicine has kept me alive, given me a chance at life,” he said. “Now I just want one more chance to be really independent, to be able to travel.”

Her parents’ financial resources from a furniture store, Debbie Gold said, helped ensure that her young son received good medical treatment.

Despite his challenges, Doug Gold played in youth baseball and basketball leagues in Las Vegas.

“He loves to have good times,” said Shawn Silber, a longtime friend. “He’s one of the most amazing people to be around, very positive about life, until he gets sick. And then he doesn’t want to be around other people. He doesn’t want other people feeling sorry for him.”

When he was 13, Gold persuaded doctors to postpone a kidney transplant until after his bar mitzvah.

Though there were a number of challenges with the kidney that his uncle donated to him – rejection problems kept Gold in need of medical care – the donated organ lasted 13 years.

Gold did undergraduate work in business at the University of Nevada, Las Vegas as he worked at Wells Fargo.

He also donated time to the Nevada Childhood Cancer Foundation and United Ostomy Association of America, serving as a camp counselor to afflicted children. And he is now in the process of developing a Web-based center that would help families navigate the financial complexities of dealing with transplants.

Even though the planned 2008 transplant to replace it failed, that first donated kidney from his uncle kept on working until August 2009.

Dialysis since then hasn’t stopped Gold from working in financial services. Or having a steady girlfriend. He does say, however, that he feels himself getting steadily weaker.

Dr. Candice Tung, Gold’s physician, said she admires her patient and how he has “chosen to live a motivated and productive life.”

Gold’s aunt, Donna Sherman, said she was devastated when the kidney she donated to her cousin didn’t work out.

“I still don’t understand what went wrong,” she said, adding that she isn’t concerned about her welfare now that she has only one kidney. “There’s no better feeling in the world than trying to save someone’s life. If I had another kidney to donate, I’d do it again.”

Lifesaving kidneys are in short supply: In 2008, there were more than 80,000 people on the official waiting list – including 220 Nevadans – and only 16,517 got transplants.

In the last three years, around 12,000 people have died waiting for a kidney transplant.

Even with live donor kidneys now sometimes lasting more than 20 years, it is not uncommon for someone who received a transplant early in life to need two more transplants, Tung said.

“There are always rejection issues,” Tung said. “Your body tries to fight it off.”

Silber recently learned that he can’t donate a kidney to Gold.

“I really wanted to do that for my friend,” he said. “It’s not a major surgery for a donor any more. I could have been back to work in a couple of weeks.”

Dr. Zvi Sela, a Las Vegas kidney specialist who has worked with Gold, said his patient’s transplant has to be done at UCLA rather than at University Medical Center or other transplant centers around the country because surgeons there are most familiar with his “urological abnormalities … It will be a very complex surgery for him.”

Gold had reconstructive surgery done on his bladder at UCLA more than 20 years ago.

Today, Gold said he is more than ready to go back to UCLA for a new kidney. As he sat in his dialysis chair, he said none of the pain he has suffered in procedures compares to the mental pain he experiences when he is tied down to dialysis.

“I want to go places, be with people, just be normal,” he said.

Contact reporter Paul Harasim at pharasim@reviewjournal.com or 702-387-2908.


So, it’s great that he’s working, but I’m a little puzzled about why 4-5 hour long treatments would lead to cramping, unless he gains a LOT of fluid. AND, of course, why he’s not doing in-center nocturnal or even home HD, if his girlfriend would be willing to help (she might not be). I assume PD is out due to the multiple abdominal surgeries. Thoughts?

Having never had a transplant I can’t say from first hand experience if that modality is any less troublesome as dialysis. I have never desired either PD or transplant as I have heard so many negative reports with both. As much as I didn’t want to go on dialysis at all, I found the concept of HD more tolerable until which time I could figure out what step might be better. I learned about home txs as well as nocturnal dialysis early on through the net and this is what I desired, but programs were scarce and the door was shut to me repeatedly until the availability of the NxStage machine. It was a tremendous struggle to get stress-free and pain-free HD txs in-center as dialysis staff I experienced were inadequately educated, thus they could not educate me, thus I had to educate myself and that took an inordinate amount of time. Also, dialysis staff was very unenthusiastic and flighty making in-center dialysis a very chaotic, dysfunctional and unsafe environment. My goal was always to get into a home program so I could get the best possible HD txs and make future decisions based upon whether a better option would come along. However, still at this time, a better option is not available and nocturnal txs provides me the best quality of life I could of hoped for in the sanctity of my own home. The stress of most often miserable in-center dialysis is over as I now control how my txs are carried out and I am good to myself ensuring that my txs go well and I am completely comfortable.

When it comes to cramping there are a number of causes:

  1. too high a fluid gain- it doesn’t matter if the tx is 2 hrs or 8 hrs- with too high a fluid gain, even with an 8 hr tx., the body might not be able to tolerate the fluid pull

  2. too fast a fluid removal rate

  3. a fluid removal goal is always a best guesstimate and even if off by .1 can result in an incident

  4. an error in setting the fluid goal

  5. a machine calibration issue

  6. a dialyzer with blocked fibers - both 5 and 6 will throw the goal guesstimate off

  7. failure to adjust dry weight in accordance with weight gains or losses

  8. inadequate assessment for fluid goal

  9. sodium intake

  10. a faulty scale or error in noting pre-weight

  11. an error in the fluid goal calculation

  12. there may be yet other factors

So, it is erroneous to assume that just because one is doing a longer tx that cramping will not occur. But if one is doing a nocturnal length tx of much longer duration with a very mild BFR of around 200, if a cramp should occur, it will be much milder or much more tolerable in most cases.

Thanks, Jane. Any thoughts about the media message that dialysis in general is a “fate worse than death,” while transplant is the “cure”?

The media is clueless about Home Dialysis, as they are clueless about most other issues.

Mark

DaVita Five Star in Las Vegas offers NxStage. So the question should be why isn’t he doing home dialysis? Not know the exact situation, it;s hard to make the assertion he should be at home without knowing all of the details. I have talked to Five Start and they will be promoting the NxStageUsers Meet Up and Conference. Hopefully, Doug Gold will attend and learn from the dialyzors who will be there – both speakers and others. The nurses and administrators I have talked to want their in-center patients to attend.

Yes, when I told the In-Center clinic that I was starting Home Dialysis, they were very happy. They said, “Mark, you really do not need to be here.” I looked at it as I was creating a seat for someone who truly needed one.