October 2010


Tomorrow night (Oct 26) at 9 PM EDT, HDNet World Report will air an episode entitled Chain of Cures: A Revolution in Kidney Transplants. HDNet has a reach of 5 million households in the U.S. But if you don’t get HDNet, you can download this show from iTunes a few days after it airs. The show, hosted by Dan Rather will report how kidney exchanges can benefit patients who are in need of a kidney transplant.

HDNet

Chain of Cures. Video still from HDNet

The show will feature the work being done by the National Kidney Registry to allow transplant centers to match kidney recipients with a compatible donor. It will describe how the matching algorithm facilitated a chain of transplants that included 21 recipients and described in a Sep 2010 blog post.

The story also features the story of a kidney transplant recipient, Melissa Clynes. Melissa was a patient at Loyola University Medical Center in Chicago. Her story was featured in an Apr 2010 blog post.

Harvey Mysel of the Living Kidney Donors Network provides some more details about Melissa’s story.

“Melissa, now 18 had a heart transplant when she was 10 days old. When she was 13, Melissa needed a kidney transplant and her mother, Mary, was her donor. Five years later, one year ago, Melissa’s kidney was failing and she needed another kidney transplant. As a result of the previous 2 transplants, Melissa was highly sensitized. Melissa’s sister, Sarah wanted to donate, but was not compatible.

“This past February, Mary Clynes participated in one of the Living Kidney Donors Network webinars, ‘Having Your Donor Find You.’ After the webinar, Mary contacted me and asked for help. We spoke many times and I educated Mary about the options that were available, one being paired kidney exchanges. I encouraged her to contact the National Kidney Registry.

“The National Kidney Registry was able to ‘match’ Melissa with an altruistic donor that was working with the Loyola University Medical Center in Maywood, IL. Within a month, Melissa was one of the first transplants in what Loyola called a ‘Pay It Forward’ program. Five months later, true to her commitment at the time Melissa received her kidney, her sister Sarah returned to Loyola and donated a kidney in the continued ‘Pay It Forward’ campaign.”

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by George Taniwaki

It’s one and a half weeks after surgery and I’m scheduled for a follow-up visit at the Univ. Washington Medical Center. This will be my thirteenth visit, and first post-surgical visit, to the hospital related to my kidney donation. (I’ve become a volunteer at the hospital, so I’ll continue coming here, just not as a donor/patient.)

I’m not supposed to drive yet. But my wife, Sue, is out-of-town, and it would be inconvenient for me to take a taxi. Besides, I’m been driving for short errands since last Thursday and have already gone back at work (and driving to commute) last Friday, only nine days after surgery.

As always, my visit starts with a blood draw for a CBC and serum creatinine tests and a urine sample for protein and assay. The tests are ordered stat so that results are ready for my appointment with the surgeon, Dr. Ramasamy Bakthavatsalam.

At my appointment, Dr. Baktha takes a look at my incision and asks me if there has been any bleeding (no) or any pus (no). He asks me if I’m taking any oxycodone (no) or acetaminophen (yes, 500mg 3x a day). He tells me that my incision is healing nicely. He advises me to start kneading the incision 2x a day to prevent my muscles from getting hard and lumpy. That sounds like good advice. I certainly want to look my best the next time I wear a revealing swimsuit.

****

Next I meet with the transplant coordinator, Kami Sneddon. She gives me a thank you card signed by the staff at the Puget Sound Blood Center HLA lab. She also provides me with a slew of goodies. She gives me a pullover sweatshirt embroidered with “Got 2 Give 1 I’m a Living Kidney Donor”, two green ribbon lapel pins, and a UWMC Living Kidney Donor license plate frame. What great swag!

She also tells me that my blood and urine results are normal. My WBC is 5.3, which means it is now “normal”. Well, that really means it’s high. (For more on my low WBC, see this Jun 2010 post.)

****

My final appointment for today is with Paige Kayihan, the living donor social worker. She’s concerned that I am overexerting myself and should have rescheduled my appointment to later in the week so that Sue could drive me. She asks me why I didn’t (I’m fine, really). She asks me how I’m doing (the surgeon says I’m progressing well, and I feel pretty good).

I do say though that reflecting on my experience, even though I was in a lot of discomfort in the hospital, having all those people doting over me and telling me what a wonderful thing I did was nice. It was sort of a letdown to go home and have to do more on my own. I tell her that I’m thinking I about donating my other kidney. She laughs. But how does she know I’m joking?

(Of course I’m joking. I know I can’t donate my other kidney. I would have to donate a lobe of my liver or lung instead. OK, now I’m really joking.)

****

The next day, after Sue gets home, she takes a picture of me with my new gear (see below). In my hands is one of my kidney pillows. I had it signed by all the nurses, therapists, housekeepers, food service staff, doctors, and phlebotomists who visited me in my hospital room.

And check out the mustache and beard. I couldn’t shave (or bathe) while in the hospital, and was too woozy to safely shave after I got home. After a week, Sue told me she liked my new look, so I kept it. I haven’t had facial hair since I got out of college. Almost nobody at work mentioned it. Maybe they didn’t notice it. But more likely they were just too polite to say anything.

gtaniwakiPostSurgery

The new me, now with facial hair. Photo by Susan Wolcott

For more information on becoming a kidney donor, see my Kidney donor guide.

My wife pointed me to a listing on Etsy for a kidney-shaped pendant. How cute.

PKD awareness pendant. Image from Etsy

[Note: This entry was actually written in Feb 2014. I changed the posting date to keep my blog entries in chronological order.]

by George Taniwaki

The story of my recovery at the hospital starts in a Sept 2010 blog post.

Day 2

I had a very difficult night. I was uncomfortable and in pain and didn’t sleep well. Despite that, this morning although I’m not feeling refreshed, I still feel a lot better than yesterday.

GtaniwakiRecovery

Feeling much better on the second day. Photo by Susan Wolcott

Kidney pillow project

I’ve brought one of my kidney pillows (see June 2010 blog post) from home. As a souvenir of my stay at the University of Washington Medical Center, I am asking every person who visits my room to autograph it. I missed all the people yesterday before my surgery and immediately afterwards. But I have started this morning. I already have three signatures.

KidneyPillow

Kidney pillow. Photo from Shumsky

Pain control

I’ve been up most of the night pushing the button on my PCA pump. I feel less pain and have less nausea this morning. I actually look forward to switching from clear liquids to having a full liquid meal. I have a cup of yogurt for breakfast. Throughout the morning, my pain level continues to drop. I still push the button, but am not in constant pain between doses and am not miserable if I forget to push it regularly.

Later in the morning, a nurse comes in and asks my name and date of birth. She then disconnects the PCA pump and gives me two 5mg tablets of oxycodone (a synthetic opiate sold under the trade name OxyContin).

No more monitoring

Another nurse comes in and asks my name and date of birth. She then removes the cannula so that I am breathing without any assistance. Then she removes all the electrodes connecting me to the monitoring device. She wheels the monitoring device out of my room.

Walking therapy

A bit later, a physical therapist comes in and says she wants me to get up and walk at least once every eight hours or a minimum of three times a day. The rolling IV pole in my room is designed to hold my IV bag and my Foley drain. It has a handle that I can hold onto for balance.

IVPole

IV pole with handle. Photo from ivpolesonline.com

She helps me sit up. This makes me dizzy, so I take several seconds before standing up. Slowly, I get out of bed. Once up, I find it hard to move. But with my wife’s help, I can shuffle to the end of the hall and back. That little walk of less than 100ft (30m) round-trip leaves me exhausted and I want to get back in bed.

Walking serves several functions. It improves breathing, it helps heal the abdominal muscles damaged by surgery, it improves circulation and the immune function, and it improves urinary tract function.

Breathing therapy

The physical therapist also gives me a deep breathing exerciser. She tells me that I should inhale deeply enough to cause the yellow ball to rise to the top of the column. This indicates my air flow exceeds 1,200 ml/sec. Deep breaths will reduce the chance of congestion and lung infection. I need to use the deep inhaler at least four times a day for the next week. Oddly, although it doesn’t hurt to breathe deeply, I find it difficult to perform this task and it tires me.

DeepBreathExerciser

Inhaling through the deep breath exerciser and watching the yellow ball rise. Photo by Susan Wolcott

Flowers and card

In the morning, I have a visitor, a fellow UWMC volunteer. (I became a volunteer this past summer while waiting for my surgery.) She brings me a pot of chrysanthemums along with a thank you card from the family of the recipient. How very thoughtful and nice. I ask her if the recipient’s room is nearby so that I can thank them. She says no, they are on the transplant floor. This leaves me puzzled. I ask her where I am. She says I am on the oncology floor. Apparently, since my donation is nondirected, to avoid the possibility of the donor and recipient accidentally meeting, they are assigned to different floors.

Surgical consult

My second visitor today is the urologist who performed the donor nephrectomy, Dr. Ramasamy Bakthavatsalam. He checks the incision. He says it looks very good and should heal nicely. He asks how I am, and I say doing well. He thanks me for being a nondirected donor and looks forward to seeing me in two weeks.

Food

By lunch, I am actually hungry. My choice is cream of vegetable soup and a cup of tea, with pudding for dessert. This soup is also bland with too much salt.

The nurse tells me that starting with dinner, I will be able to order any meal I want from the menu and they want me to get my digestive tract back to normal activity.

Living donor advocate visit

The living donor advocate, Paige Kayihan, drops in for a visit. She wants to make sure my recovery is going well and that I don’t have any problems. Everything is fine I say. I will have a follow-up meeting with her next week.

Day 3

I feel a lot better on the third day and look forward to going home.

No more urine monitoring

A nurse comes in and asks my name and birthdate. She then removes the nearly empty IV bag from my arm (about the 10th one I’ve had since being in my room) and removes the catheter. She also removes the Foley catheter from my bladder and empties the collection jug one last time. She says she will be back later today to confirm that I can pee. I feel somewhat inadequate. Really, she wants to know if I can pee?

Physical therapy

I’m now able to walk all the way around the hospital floor without stopping. However, I do stop and look at the art on the walls and read the curator’s tag on each one. I’m also finding it easier to do my breathing exercise, though it still tires me. My therapist tells me that I am doing great and can be discharged as soon as I can urinate on my own and have a bowel movement.

Transplant rounds

Today, a group of interns and residents in the transplant program come to see me during their rounds. They are led by Dr. Stephen Rayhill, the attending kidney transplant surgeon at UWMC. I assume he was the surgeon who transplanted my kidney into the recipient. He asks me how I am. I say I am doing fine. I ask how the recipient is doing. He says that he can’t tell me. (I knew that.) I tell him that’s okay, because I can tell from the demeanor of the other doctors that everything must be okay. He smiles. I ask him to sign my kidney pillow.

StephenRayhill

Stephen Rayhill. Photo from Seattle Children’s Hospital

After Dr. Rayhill leaves, I wish I had asked him two questions. First, since my nephrectomy was delayed, is the patient who received my kidney yesterday the same one who would have received it in June? That is, did the original patient who was offered my kidney wait three months for my kidney or go with a next available deceased donor? (For my original thoughts on this, see July 2010 blog post.)

Second, was he involved in the decision to perform open surgery on me. (For my original thoughts on this see Sep 2010 blog post.) I think his answers to both questions would make excellent blog topics. Oh well.

Discharge instructions

The living donor coordinator, Kami Sneddon, drops in to visit. Like everyone else who visits, she thanks me for being a nondirected donor. She gives me a set of instructions for my continued recovery at home and reviews them with me. She gives me prescriptions for narcotic pain relievers, antibiotics, and stool softeners. She also sets up an appointment for my one-week follow-up consult with the surgeon.

Discharge

It is almost 6:00 pm and I’ve finally had a bowel movement. The nurse agrees that this is the last milestone that indicates that I can be discharged. I start to get dressed and realize that I can’t fit in my pants. My abdomen is distended from a combination of the IV fluids and the inflammation caused by surgery. I have to borrow a hospital pajama bottom to wear. I promise to return it when I come back for my follow-up physical exam next week. Looking quite dignified in dress shirt and pajama bottoms, I walk out the hospital with my wife, who drives us home.

For more information on becoming a kidney donor, see my Kidney donor guide.