Bill Peckham: 25 Years Living Well on Hemodialysis

[Zach]

I'm proud to call Bill Peckham my friend.

http://esrdncc.org/bill-25-years-living-well-on-hemodialysis/

Bill: 25 Years Living Well on Hemodialysis

End Stage Renal Disease (ESRD) National Coordinating Center (NCC)
December 2, 2015

Kidney disease hit Bill Peckham without warning. He had graduated from college in 1985 and was looking for his first job. One morning he woke up with swollen ankles. Bill went to the doctor and was diagnosed with focal segmental glomerulosclerosis (FSGS). FSGS is when clusters of tiny blood vessels in the kidneys, that filter waste from the blood, are scarred and damaged. FSGS may progress quickly to kidney failure or move more slowly.

“They tried everything they could to slow the progression,” Bill said. “But it was clear I would need a transplant in a few years.” Bill’s oldest brother was a good match and donated a kidney to him in 1988. Bill thought his problem was solved, but FSGS recurred in the transplanted kidney. Eventually the donated kidney failed. Bill had a fistula placed and started hemodialysis in 1990.

Going back to work as a carpenter helped Bill focus on his diet, exercise and treatments. “Having a physical job really helped me,” he said. “I’m on my feet all day. You have to keep moving!”

Travel also helped him maintain control in his life. Bill started traveling with a vacation trip to Chicago, which included a visit to an in-center dialysis facility. On his first trip, he felt uncomfortable with having someone unfamiliar insert his needles during treatment. A nurse from his dialysis facility at home convinced him to learn self-cannulation, the technique of inserting his own needles. This made him feel more comfortable and gave him the confidence to travel, and to set up treatments in centers where he wanted to go.

After other vacations in the U.S., he learned that his union would cover the cost of dialysis if he wanted to travel outside the country. Bill made his first international trip in 1995 to Costa Rica, followed by a two-month trip to Europe in 1996. “I was a success [at] dialyzing in-center around the world,” he said, this included a three-month trip to Europe, South Africa and Australia in 1999. “Travel helped me feel normal and gave me something to talk about.”

Bill tried different treatment modalities to see which would help him live the life he wanted. Being able to work and travel while getting treatments was important to him. In 2001, Bill, with help from his dialysis facility, changed to home hemodialysis.   He began to feel better but found having treatments six days per week time-consuming. Eventually he decided to try nocturnal home hemodialysis, in an effort to reduce his treatment burden and have more time for work. “For the first time in 17 years I had evenings free,” Bill said. “I could do what I wanted, come home, and do hemo[dialysis] while I slept, then get up and go to work.” He carried his home hemodialysis machine on an eight-day raft trip through the Grand Canyon. “I dialyzed in 120 degree heat, and the machine did fine,” he said.

Bill’s volunteer work with Northwest Kidney Centers has also been an important part of his life since 1987. He was on a task force which helped establish a kidney research institute in partnership with the University of Washington, and is still active on their Kidney Council.

Being involved in your treatment is essential to living a better life with dialysis, according to Bill. “There’s a lot of luck involved, but [it’s] also doing everything you can to make the most out of your life,” he said. He advises others to take care of their fistula, avoid hospitalizations, and watch their diet. “Most people can stray from the path and nothing will happen, but for people with a chronic disease, it’s a pretty steep slope once you stray off the path,” Bill said.

Bill has been on hemodialysis for 25 years and has worked for most of that time. “I think of it as a marathon,” he said. “I’m coming to the point where I can retire with a pension. That’s amazing. I didn’t think I would be able to work when I started [dialysis].” Bill plans to continue traveling. One of his lifetime goals is to visit 50 countries. “I’ve been to 36 so far,” Bill said. “I think I can get to every continent, except maybe Antarctica.”

#TogetherWeCan is a continuing series of stories from kidney patients and care partners, sharing their experiences and insights.

[Michael Murphy]

This guy is my hero, I have the utmost respect for this gentleman.  This is the photo that should be shown to all new dialysis patients.

[Darthvadar]

Well done, Bill...

Here's to the next twenty-five years!!!...

Darth....

[stayingalive]

  Although I am on PD I am also in awe of you.  @5 more ahead without complications for you my friend!!!

[Vt Big Rig]

Congrats on 25 years.

This gentlemen's story is inspiring.

His dedication to living a "normal" life is something we can all aspire to.

[Michael Murphy]

I don't think he's living a normal life, a this man is living a extra ordinary life.  Most normal people are happy watching tv on the couch, Not sitting on a raft in the middle of a national park performing a life extending procedure.

[Vt Big Rig]

That was kinda why "normal" was in quotes.

 Normal is hopefully different for every one. 

Otherwise, what a boring world it would be. 

[willowtreewren]

Bill is certainly an inspiration, whether you are on dialysis or not! 

Congrats, Bill. 

Aleta

[Bill Peckham]

The way I say it is that I am living the life I was meant to live but for severe kidney disease - travel, work and volunteering. Normal enough.


Thanks for posting this Zach and everyone for the kind words. I'm off to the Bahamas tomorrow for a week of incenter and hopefully a week of sun and fun.

[Simon Dog]

Bill - is it true you once listed your dog as you home care partner?  If so, how did he do the job without opposable thumbs?

[Bill Peckham]

I've quipped that my dogs are my helper on a few occasions ( I sometimes use a photo of my last dog lying between my legs as recline during treatment when I give PowerPoints. The folks at CMS have seen the picture and mention it often, I guess it made an impression re: what matters to prevent infections (wash your damn arm before treatment) and what doesn't matter), seems some have missed the joke. My dogs can't be helpers because they're worthless  other than occasionally providing some heat. Won't even fetch my phone when I've left it charging out of reach.

When I first started dialysis I met Mike Matson who confided in me that he lived alone and self dialyzed on the downlow, listing his sister as his his helper a ruse she went along with but when I decided to self dialyze I thought doing it on the downlow would be corrosive  to an optimal relationship with the center. Which is/was a relationship I value. So I advocated for an official policy that supported self dialysis, even for those of us who live alone. As you said in another thread how could a center support a decision to go into hospice but not a decision to self dialyze?

The HH medical director at the time was initially against the idea but when pressed could not muster a convincing argument to support her gut reaction, so to her credit she came around and supported the policy. Northwest Kidney Centers in Seattle contiues to support lone dialyzors who want to dialyze their way, at home.

[Michael Murphy]

I did show the picture of you on dialysis to the administrator of the center  I go to and asked her how come other places provide a better view for the patients.  To say the least she was stunned.

[kitkatz]

Great going Bill!  It is nice to see someone living life to the fullest and enjoying it while on dialysis.

[Bill Peckham]

Something that article didn't mention is that photo was taken on July 4th 2013 not a bad celebration of Independence Day. Very apt I would say. Also not mentioned that red can on the travel case is champagne (no glass bottles allowed in the canyon).

[Simon Dog]

As you said in another thread how could a center support a decision to go into hospice but not a decision to self dialyze?

Easy.   It would be easy for a contingency fee attorney to argue that the "prevailing standard" is a care partner if something happened to you running solo.

It's not about keeping you alive, but about making sure that the center does not get sued if you die.