Margo Sorgman was diagnosed with an MPN, polycythemia vera (PV), just a few months ago at the age of 71. She shares her story of learning about the condition, meeting with Dr. Brady Stein, and how she’s doing today.
Jeff Folloder, a husband, father, son, and cancer survivor, discusses his own personal journey with CLL and his philanthropic efforts in the cancer community.
Why do I have lung cancer if I’ve never smoked? Dianne Stewart, a stage IV cancer patient, asked herself this question following her diagnosis. Hear about her initial stage of shock and denial and her advice for others.
March 20, 2012
Kidney transplant recipients currently must take immune-suppressing
medications to prevent organ rejection, which can make them vulnerable to
infections and disease. In this podcast, Dr. Joseph Leventhal explains
ongoing clinical trials at Northwestern that
focus on eliminating the need for anti-rejection
medication by convincing the patient’s immune system to
recognize the new organ as a native part of the body. One clinical
trial participant, Lindsay Porter, now post-transplant and doing well, shares
her story about how she benefited from this ground-breaking research.
View more programs featuring
Joseph Leventhal, MD, PhD and Lindsay Porter
Produced in association with
Joseph Leventhal, MD, PhD
Be the first to know about new programs and information with email alerts.
Please remember the opinions expressed on Patient
Power are not necessarily the views of Northwestern Memorial Hospital, its
medical staff or Patient Power. Our
discussions are not a substitute for seeking medical advice or care from your
own doctor. That’s how you’ll get care
that’s most appropriate for you.
Andrew Schorr:Kidney transplant recipients currently must take immune-suppressing
medications for the rest of their lives, handfuls of pills to help their bodies
prevent rejection, which makes them more vulnerable to infections and over time
even cancer. Well, coming up, an expert
from Chicago’s Northwestern Memorial Hospital explains treatments in
development that may make these medications obsolete, and you’ll meet a patient
who is benefitting. It’s all next on
Hello and welcome to Patient Power sponsored by Northwestern
Memorial Hospital. I’m Andrew
there are people who need organ transplants, and kidney transplants are not at
all uncommon, and people who have diabetes over many years may need them. People who have a genetic condition called
polycystic kidney disease, and there are other conditions, they may need them
too. Well, typically you’re getting a
donation from someone who is pretty well matched, as matched as well as they
can, but you need to take anti-rejection medications for the rest of your
life. And there can be side effects,
there often are, and even an effect on the donated organ where you may need a
transplant sometime down the road.
Wouldn’t it be great if there could be a procedure where those
medications might be taken for just a short time or maybe it could be worked
out not at all, but certainly for a short time, and then you go on with your
life and you don’t have to swallow that handful of pills and worry about those
side effects and the organ being rejected.
Well, that has been pioneered now with a collaboration of two
universities, Northwestern Memorial Hospital helping lead that, and we’re going
to talk about that today. Let’s start
with someone who has benefitted. That’s
47-year-old Lindsey Porter, mother of five-year-old CJ, who is in the drama and
theater field in Chicago. Lindsey,
welcome to the program. Back in the
summer of 2010 you participated in a clinical trial and so today now, many,
many months later, you really don’t take any anti-rejection medicines, do
Lindsay:Don’t take any, no.
Andrew Schorr:You’ve got to marvel at this.
Is this like a miracle for you knowing that for so many other people
that’s not the way it goes?
Lindsay:Well, it sure feels like a miracle, I mean in terms of the
results. I know that many, many years of
hard work went into it, but in terms of the way I feel and the results, it’s
pretty amazing, and sometimes I have to remind myself that I had a transplant
because it’s just a memory.
Andrew Schorr:Wow. Now, this is very
personal for you. Your mother died when
you were still in your teens of complications.
Lindsay:Actually 23, but yeah.
Andrew Schorr:So, but still at a young adult age, vividly remember that she
had this genetic condition, polycystic kidney disease, which was passed on to
you, and your sister Sarah, too, right?
Lindsay:That’s true, yes.
Andrew Schorr:And so Sarah is doing well, but your kidneys got to be really
big. How big?
Lindsay:Well, I was constantly asked when I was pregnant--when I was
due because I looked pregnant, and when they were removed they weighed 16
pounds. So that’s two full-term
twins. In fact, my husband and I
nicknamed them the twins because I had to wear maternity clothes, I mean, yeah,
they were big.
Andrew Schorr:Wow. So a transplant was
certainly needed in your case, so you have a dear friend, Kurt, who agreed that
he would be a living donor.
Andrew Schorr:And he was going to donate one of his two kidneys to you, and
so there was the whole issue of how would it match and taking pills. And I understand you attended a seminar, I
guess it was at Northwestern Memorial, and you were learning about
Lindsay:It was when I first got listed for transplant, about a year and
a half before I actually had the transplant.
Yeah, I went and heard one of the presenters there talk about a clinical
trial they were doing for perfectly matched donors or sibling donor--you know,
donor recipient pairs, and they said that they were working on possibly in the
future being able to do that with nonrelated donors. And it sounded exciting but it didn’t sound
to me like it was something that was going to happen in a time frame that would
work for me.
Andrew Schorr:Right. But, and the idea
was, could the procedure be done in a way where you wouldn’t have to take all
those pills and worry about that rejection, but the timing did work out for
you. So in the summer of 2010 you not
only had Kurt’s kidney put inside you but you also had what might be described
as sort of a mini bone marrow transplant, didn’t you?
Lindsay:Yeah. Yeah, I think that
is how they do describe it.
Andrew Schorr:Yeah, we’re going to learn more about it from your doctor,
Dr. Leventhal in just a second, but I just want to ask you about the
recovery. So we talked about the happy
time now you really don’t take any anti-rejection medicines, and I understand
you have a lot of energy to chase around with five-year-old CJ, but the
recovery from the procedure--now, recovering from a transplant is one thing,
but what about this sort of stem cell infusion part of it that you went through
as well and the chemo conditioning we’re going to learn about. It’s not easy.
Lindsay:No, it was a rough recovery for a while. I knew that it would be. I think it surprised me a little bit because
I had a bilateral nephrectomy, both kidneys out, that’s a pretty intense
operation, but I kind of really flew through that. I felt bad for probably about three months, I
mean slowly I recovered over three months, but normally I know transplant
patients often report that they feel great a week later. But the long-term result was well worth
feeling bad for a short period of time, well worth it.
Andrew Schorr:One more thing before we meet Dr. Leventhal who really led the
team that did this for you. Do you feel
like you received two gifts? One gift
was the kidney donated by your friend Kurt, and the other gift was that you
were able to participate in this clinical trial of really groundbreaking
significance in that you’re living so well now.
absolutely. And I’ve often thought that,
you know, you get these sort of gifts that there is no quid pro quo for that
kind of thing, and the only thing you can do is live your life as healthy and
as happy and as well as you can and sort of honor the people who have given you
that by sharing the story and treating your body well.
Andrew Schorr:We’re going to hear more from you later on, but let’s honor
somebody who has helped you with this, and that’s Dr. Joseph
Leventhal. Dr. Leventhal is a transplant
surgeon, and he’s director of the living donor renal transplant program at
Northwestern Memorial Hospital. He’s
associate professor of surgery at Northwestern’s Feinberg School of
Medicine. Dr. Leventhal, so here’s
one of your first patients [who has received treatment] that I know you and
your collaborators have been planning for a long time. It must make you feel great that it’s working
out so well right now.
Dr. Leventhal:Well, it’s extremely gratifying, and I think it represents for
us validation of many decades of research initially starting in small animals
and ultimately translating into the clinic we think an approach, a treatment
that will have long-term benefits for our transplant recipients.
Dr. Roy Bloom gives patients facing kidney failure an in-depth overview of the process of preparing for, undergoing, and recovering from a transplant.
Published: May 2, 2011
Lyndon Carter is thriving and living well after three kidney transplants. Hear his story...
By Andrew Schorr