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11/10/2021 04:45:00 PM

Nov10

Cantor Joel Caplan

BS”D
 

Cantor Joel Caplan – Kidney Donation, June 2021
(More Than You Ever Wanted To Know, Probably)


Why did your brother need a kidney?

My brother David had leukemia 18 years ago, in late 2002. All other treatments failed, so he needed a stem cell transplant, and I was the donor for that. The transplant was done at the University of Iowa (UI) – a state-of-the-art medical center, only a mile away from where he lives.

That transplant worked quite well. As a result, he now has my marrow and my blood. But since then, he's had a whole host of other health troubles, including a second type of cancer, pulmonary trouble, and kidney failure. He's been on dialysis for almost three years.

Why did it have to be your kidney?

Doctors in Iowa told him, "You're not strong enough for a kidney transplant." But one surgeon said, "If the kidney comes from your brother Joel, I'll do that surgery. Since you already have his blood, you won't need as much anti-rejection medication."

How did you feel when he asked you to consider donating your kidney?

It wasn’t an immediate decision. He asked almost two years ago, when our father was in his last days. David, David’s wife, and my mother all stressed repeatedly, “You don’t have to do this.”

But:
• It’s part of family taking care of family.
• We are four brothers. He’s been hammered with multiple illnesses, while the rest of us are relatively healthy.
• I can live just fine with one kidney. We know several other people in the One-Kidney Club.
• It’s the right thing to do.

Who decided when the transplant would be?

I wanted it done in late June, so that I could recover in July. Recovery time for the donor is usually 2-4 weeks. We were going to do this in the summer of 2020, but with the pandemic, neither he nor I wanted to spend time in a hospital until we could be vaccinated for COVID-19.

Why didn’t you have the kidney out in Iowa?

Before the pandemic, the UI required that living donors come to Iowa City for the transplant. But as the pandemic dragged on, they – and many other transplant centers – agreed to let living donors have their surgery far away, and then fly the donated kidney to Iowa.

I also wanted to recover at home, if possible, rather than in Iowa. I discussed this with the head of the UI program:

Me: It’s all right for me to have the surgery here in New Jersey?
Doctor: Yes.
Me: But isn’t it better for David if I’m down the hall?
Doctor: Actually, studies show that recipients do slightly better if the kidney is flown in.
Me: That makes no sense.
Doctor: Well, they take really good care of the transported kidneys.

This makes me wonder what they’re doing with the kidneys that get wheeled down the hall:

Orderly: Hey, Bob! Watch me juggle this – whoops! Little bugger slid right down the stairs!

Which kidney did they remove?

The left one. They almost always remove the left kidney, because your two kidneys aren’t positioned exactly the same way inside your body. The left one has longer piping: a longer artery bringing blood in, and a longer vein taking blood out. So they usually take out the left kidney, with its longer piping, because that makes it easier for David’s surgeons to connect the piping inside him.

Did they take his kidneys out?

No. His kidneys aren’t doing the job for him anymore, but they’re not diseased. They’re not hurting him. And you don’t want to do more cutting than you have to.

Where did they put the new kidney in his body?

Your kidneys are above your belt line and near your back. You might think they’d put the new kidney in that area, but no. It’s easier for them to open up the front of his belly, smush aside organs to make room, and connect the tubing there.

Smush aside?

Dr. Kandula, the Medical Director of the St. Barnabas Living Donor Institute (LDI), told us, “Donors ask me, ‘Will I have a hole where the kidney was taken out?’ It doesn’t work like that. It’s more like paella. Say you have some paella in a pot. When you scoop some out, does that leave a hole? No, the other paella smushes in and fills up the hole. Well, your abdomen is like that. It smushes around. You won’t have a hole.”

The Paella Theory of Abdominal Anatomy.

How does having only one kidney change your life afterward?

There’s very little change. People with kidney troubles might have to avoid bananas, and foods with higher potassium, but I don’t have to do any of that. The only noticeable difference, really, is that I’m to use Tylenol now rather than Advil. If you have two kidneys, Advil is fine. But Advil and its chemical cousins (NSAIDs) are harder for my one kidney to process, so now I’m a Tylenol guy.

And how are you and your brother doing now?

Today is July 9, two weeks after surgery. I have been recovering just fine. Up to about 90% of normal energy, and I’m back at work. My brother has a longer road, but he’s now home from the hospital, and making slow steps in the right direction. Good!



Things we learned along the way:

  1. Top Program: For most of us, St. Barnabas hospital is simply “the local hospital”. But it excels in many ways, and it’s considered the 8th best Living Donor kidney/pancreas transplant program in the country.
     
  2. Emotions: We asked Dr. Kandula, “Why did you choose to work with kidney transplant patients?” He said:
     

I was working in Internal Medicine, seeing patients with all kinds of problems. I told one woman, "We ought to do a cardiac catheterization." She politely refused.

About three months later, her symptoms had worsened, and I said, "Let’s do that cardiac catheterization." Again, a refusal.

Three months later, she came in again, even sicker. We sat down together, and I said, “Why don’t you want to have this test? It’s relatively simple, and it can help dramatically.”

She said, “Doctor, I received a kidney from my son. Later, he died. If something goes wrong with this test, and *I* die, my son will die again.”

I said to myself, “If this is the kind of emotional attachment that people involved in transplants have for each other, I want to be part of that kind of medicine.”

3. Checking Me Out: Before any surgery, the LDI wanted to make sure that I was very healthy. Yes, they care about me, but they also care about their own statistics. See, if anything happens to me within two years of surgery – if, God forbid, I’m killed in a car accident, or fall down the stairs – even if it has nothing to do with the surgery, they have to list, “This donor died within two years of surgery.”

So they tested me up, down and sideways. Blood, urine, CT scan, EKG, echocardiogram, nuclear stress test, and more. Fine by me!

Some of the testing was psychological. I had the good fortune to be interviewed by Lauryn Weinshank, Lead Social Worker in Transplant – a CAI member whom we’ve known for years.

I wondered why psychological testing was needed, but yes, it matters. First of all, they want to make sure that I’m really doing this voluntarily, and that I’m not feeling pressured to do it. That wasn’t a problem in my case, but clearly, sometimes there’s pressure on a donor to do this.

Secondly, they say things like, “Don’t expect giving a kidney to repair your relationship with the recipient.” What if, say, a young woman wants to donate a kidney to her boyfriend? They’ll say, “Very generous. But what if you two break up? Would you still want him to have that kidney?”

They told me, “After the surgery, no contact sports for you. You want to protect that remaining kidney.” There goes my NFL contract.

I was giving a kidney to my brother, so they didn’t question my reasons much. “But there are altruistic donors who just come in off the street and say, ‘I’d like to donate a kidney to whomever needs one.’ That’s beautiful – but we really check their motives thoroughly…”

4. Thanks: The day before surgery, I got this text message from David:

“Just completed what should be my last dialysis treatment. 2159 hours spent hooked to that machine since my kidneys failed. Due to your generosity, I hope I’ll never have to do it again. Thanks for saving my life with your bone marrow and now saving my quality of life with your kidney. Hope all proceeds smoothly tomorrow. Thanks, David”

5. Cleaning Power: Before the surgery, David told me, “The doctors have said to me, ‘After the surgery, you’ll probably feel a lot less tired. You know that you need dialysis if you have about 10% of normal kidney function or less.

“’But dialysis doesn’t clean out the toxins in the blood as well as healthy kidneys would. In fact, dialysis only gets you to about 14% of normal kidney function. That’s enough to keep you alive, but it’s not much better than ‘kidney failure’ level. That’s why you need dialysis three times a week.

“’On the other hand, if the transplant works, the new kidney should get you to about 50% of normal kidney function. That’s actually fine, and a healthy level. You’ve been living so long with all those other toxins in your blood, you’ve probably forgotten what it’s like to have ‘normal’ clean blood.

“’It’s like when you had your cataracts removed — you didn’t realize how much visual clarity you had lost until suddenly you could see normally again.’”



Funny stuff along the way:

  1. Pie: My Dad once went to a pub in London, and ordered kidney pie.

    When asked how it was, he replied, "I don't know if I'd order that again. I guess you have to boil the piss out of it."
     
  2. Our daughter Simona told her daughter Tal (3) that Zayde was giving a kidney to Uncle David. Tal said, "Hey, I'm a kid-ney!"
     
  3. More good lines from Dr. Kandula, the Medical Director of the LDI:
     

“You might be in the operating room for a few hours, but most of that time is preparation, and some recovery. The actual cutting time of the surgery is about 35 minutes. You want it to be like car theft. Fast. Get in and get out quickly. If the cutting takes more than 35 minutes, something has gone wrong.”

And for the next story, you need to know that he is originally from India:

Dr. Kandula: And here is another list. Please don’t take any of these compounds as a supplement during the two weeks before surgery.

Nancy: Hmm…I understand about aspirin. It can increase bleeding. But garlic? Ginger? Turmeric? Can I still cook with those?

Dr. Kandula: Yes, you can cook with them. Just don’t take them in large amounts, in supplement form. We Indians use a lot of turmeric in our cooking. It’s a wonder we haven’t all bled to death.

4. About eight of us upcoming donors were on a conference call with Dr. Aitchison, one of the surgeons.

Me:  St. Barnabas is a teaching hospital. Is —

Dr. Aitchison (interrupting): No, there won’t be any resident or student cutting into you. That’s for the surgeons to do, including me.

Me: Would you please tell us about your level of experience with this?

Dr. Aitchison: We do several hundred kidney transplant surgeries each year at St. Barnabas. Those are divided between two other surgeons and me. I’ve been doing this here for six years. Dr. Sun has been doing it for over 15 years, and Dr. Geffner for over 21 years. We’ve all done this operation hundreds or thousands of times.

Me: Good!

Dr. Aitchison: You know, if I ever need to go to Bed, Bath and Beyond to buy towels, I’m at a loss. I have to find someone there and get help. But kidneys? I know what to do with kidneys. That’s what we do, day in and day out.

5. We’re in the Operating Room. They have me lie down on my back, and they strap my arms down. The anesthesiologist connects a tube to my arm.

Me: Will you please let me know when the anesthetic is coming?

Anesthesiologist: Okay. Here’s the first cocktail.

Me: Does that mean that the an – (Blackout)

6. How did my kidney get to Iowa? It flew on regular commercial flights, as cargo.
It was packed in a box (with ice, maybe?).
A courier drove it to Newark Airport.
It flew to O’Hare Airport in Chicago, then got transferred to a flight to Cedar Rapids, Iowa.

Another courier drove it from that airport to the UI Medical Center.

But Nancy and I know that there’s often a delay at O’Hare when connecting to the second flight to Cedar Rapids. Sure enough: David’s surgery was to start at 5 p.m. that day, and shortly before that, we got a terse text message from Joni, his wife: “Kidney delayed at O’Hare.”

Kidneys are generally okay for up to 16 hours outside the body. This was now about 11 hours. It must have been a bit tense over there.

The delay ended up being about two hours, and surgery went well.

7. I had to sign a bunch of different waivers for the hospital. Yes, I’d allow them to do the surgery. Yes, they had explained that there were certain (small) risks, and I understood those. Yes, they could share my medical history with various doctors.

One of the items had to do with Fall Risk. Nurses need to be able to evaluate whether a patient is likely to fall. If it’s likely, they might put rails on the bed, or even restrain the patient if necessary, to keep her/him safe.

Risk Points are given if the patient is dizzy, or is unsteady on his/her feet, or for a bunch of other reasons. And: You get one Risk Point automatically if you’re male.

“Really?” I asked. Yep. It’s called the I Can Do It Myself factor.

Hmm. I guess they know us guys.

8. I wanted to give a name to the donated kidney. Instead of saying to David, “How’s the donated kidney working?” I could say something like, “How’s Filbert doing?” But I wanted a name that began with K. So in my hospital bed, I googled “Names that begin with K”, and it took me to a baby-names website. Lots of K names: Kayden, Kaden, Keenan, even Kain. I finally saw “Kevin”. We had just seen “In The Heights”, and Kevin is a main character. Okay. Kevin the Kidney.

But then I wanted to name the remaining kidney, the one still inside me. We needed another “K” name.

Me: What about a Hawaiian name? Lots of those begin with K.
Keanu, Kailua, Kamehameha…

Nancy: How about an African name? Lots of those also begin with K.
Let’s ask Kwadzo.

Kwadzo had lived in our house for over a year when he first came to America, as a political refugee from Togo. One of the first things we had learned about him is that “Kwadzo” is a common name in Togo, because many parents give that name to any baby boy born on a Monday. There’s also a typical name for Tuesday boys, Wednesday boys, etc., plus other names for Monday girls, Tuesday girls, Wednesday girls, etc.

Kwadzo now lives in Staten Island. I texted him from my hospital bed, asking about the other boy names. (I guess I was leaning toward male names for the kidneys.) Within minutes, he responded:

Monday’s name is Kwadzo
Tuesday is Komlan
Wednesday is Kokou
Thursday is Yao
Friday is Koffi
Saturday is Komi
Sunday is Kossi

Friday’s name caught my eye. Koffi. Like Kofi Annan, the former Secretary General of the U.N. But “Koffee” was also our grandfather’s Jewish name. (I had read that it’s a nickname for Ya’akov, like Koby or Kovi.)

Nancy said, “David got your kidney on Thursday night. That’s Erev Friday, the eve of Friday.  So maybe you should call that kidney Koffi instead of Kevin. He might like to use your grandfather’s name for the kidney that he now has.”

I called David, hospital room to hospital room. He was still quite weak from surgery, and he murmured, “Kevin’s fine with me.”

So there you have it. He has Kevin the Kidney, and I have Koffi the Kidney.



Thanks for reading!

As we prepared for surgery, we were surprised by the number of people we knew who were members of the One-Kidney Club. I won’t name names, because I’m sure to forget someone – but thanks to all those who shared their stories and let us know what to expect.

And my thanks to David Caplan, Dr. Praveen Kandula, and Lauryn Weinshank for graciously giving their consent to sharing this information.

If you want to know more, or are interested in organ donation, by all means contact me.

Cantor Joel Caplan
jcaplan@agudath.org
973-226-3600 x116

April 19,2024 /  11 Nisan 5784