100-Plus Years of Kidney Patient Experience:
Long-Term Survivors Share Tips and Strategies
Welcome to KidneyTalk!
On this week’s show, Lori Hartwell
and Stephen Furst take part in a fascinating conversation on living
long and well in spite of kidney disease. As you may know, Lori has been a
kidney disease survivor for the past 38 years. Stephen, on the other hand,
only recently started dialysis, so he’s “all ears” as Lori and two lovely
ladies carry on a casual conversation about how they got to this point in
their lives. Altogether, Lori and this week’s guests, Roanne Dale and Sharon
Pahlka, share more than 100 years of combined kidney patient experience
among them.
“What do you do when something happens and you just don’t
understand?” asks Stephen. “Why does my blood pressure plummet while I’m on
dialysis?”
“I had very low blood pressure,” answers Sharon, who’s
currently enjoying a kidney transplant. “Part of the reason was that I would
lose too much fluid weight while on dialysis.”
“I always run pretty low,” says Roanne. “What helps me feel
better is to eat half a piece of toast and drink a small amount of coffee
within the first 30 minutes of dialysis.” Interestingly, Stephen reports
that he just tried that for the first time, and it did seem to help. (How
great is it to ask a question, get advice, and know that it works?!)
Lori suggests that choosing the proper hemodialysis access,
along with its proper management, are keys to long-term dialysis success.
Roanne agrees, and she has good reason: her access, an AV fistula, has
worked wonderfully for the last 28 years!
Sharon concurs that “the AV fistula is the gold standard.”
Her fistula lasted for 19 years, right until she had it tied off after
receiving her transplant. “My fistula became my lifeline,” says Sharon.
Other valuable tips offered by the patient-experts on this
week’s show are: Know your lab numbers, be your own advocate, take care of
your access, practice prevention, and talk with your doctor about anything
that concerns you or that you don’t understand. Offers Lori: “Never think
you know everything. There are always new advancements in the renal field.”
All three of these long-term survivors agree that patients
need to ask fellow patients questions regarding their experiences with
kidney disease. After listening to this collection of long-term survivors,
Stephen comments that he’s seeing “such a closeness and willingness to help
each other in the renal community.” Lori couldn’t agree more: “It’s all
about patients helping patients,” says Lori. “One friend can make a
difference. It’s so important to connect with each other.”
Among kidney patients, there’s a wealth of knowledge just
waiting to be shared. We encourage you to reach out and ask.
