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Quiet Heroes: A Guide to Living Kidney Donation

Quiet Heroes: A Guide to Living Kidney Donation 

Johns Hopkins Comprehensive Transplant Center
Live Kidney Donor Program

Donor

A giver, a contributor,

a supporter, a benefactor,

a selfless humanitarian,

A hero.

© 2005 

Introduction

Advantages to Live Donor Kidney Transplants

Choosing to be a Live Donor
Who can be a live donor
Concerns of live donors
Safety of donor surgery
Benefits of being a live donor


The Donor Evaluation
Blood and Tissue Type matching
Initial Screening Tests
One – Day Donor Evaluation
Scheduling the Donor Surgery


Transplant Day
The Donor Surgery
Initial Recovery in the Hospital
Recovery at Home


Your Future After Donation
Future Health Concerns
Insurance Issues
Becoming Pregnant or Fathering a Child
Financial Issues


Incompatible Kidney Transplant Program (InKTP)
Blood Type Incompatible Kidney Transplantation
Paired Kidney Exchange Program
Highly Sensitized Patient Protocol
Altruistic Stranger Donation


Comprehensive Transplant Center Telephone Directory

Quiet heroes

At Johns Hopkins Hospital, we’re privileged to see heroes everyday.  The quiet heroes.  The people who save others-related, unrelated, even total strangers-with a living organ donation.

This booklet describes the live kidney donor program at the Johns Hopkins Hospital Comprehensive Transplant Center.

Since 1970, Johns Hopkins has performed hundreds of live donor kidney transplants.  Unfortunately, though, the number of people waiting for a transplant far exceeds the number of donors.

Until recently, it wasn’t easy to be a live donor.  First you had to be related to the recipient, then your blood and tissue type had to be compatible.  Also the donor surgery discouraged some people from donating because it resulted in a large scar, substantial pain and a prolonged period of recovery.  These obstacles eliminated up to 35% of the people who wished to donate.  Today, thanks to innovative surgical techniques and pioneering research, most of the people who wish to donate are now able to do so.

In 1995, surgeons Lloyd Ratner, MD and Robert Montgomery, MD and urologist Louis Kavoussi, MD developed the new live donor surgical procedure called the laparoscopic nephrectomy.  Unlike the older method that removed the kidney through a large incision, the laparoscopic nephrectomy uses only four small incisions.  The results are amazing.  Donors now have shorter recovery time and much less pain.  Over 700 laparoscopic live donor nephrectomies have taken place at Hopkins.  Surgeons from all over the world travel here to learn this procedure.

Patrice Ervin and Andrew

 "Donating to my son was the 
most wonderful thing I've ever 
experienced in my life.  It was
like giving birth again."   


Patrice Ervin, Kidney Donor
To her Son Andrew        

     "I’m so thankful I was available as a donor This was such a positive experience.

James Baily, III, Kidney Donor to his Daughter Belinda."
 

James Baily III with Daughter Belinda

Even with the new surgical procedure, donors were still being turned down because they weren’t blood-type or tissue compatible with their recipients.  Today, Johns Hopkins is able to offer three exciting live donor programs that safely allows incompatible donors to donate their kidneys.  For donors and recipients whose blood types do not match, you may be eligible to participate in a Blood-Type Incompatible Transplant or in a Live Donor Paired Kidney Exchange [Donor Swap]
Transplant.

Perhaps the donor and recipient have been told their tissue is not compatible.  This is common when a recipient has had a previous transplant, blood transfusions or pregnancies.  The recipient becomes sensitized to the donor.  The Highly Sensitized Patient Transplant Program is designed to desensitize the recipient through a special treatment called plasmapheresis so a successful live donor transplant can then take place.

All three of these novel programs have been highly successful.  You’ll find more information about these programs later in the booklet.  Now, more that ever, almost anyone who is medically eligible can be a live kidney donor.

There are heroes out there.  Quiet ones willing to perform a selfless act of courage, to save a life.  At Hopkins, we are dedicated to fulfilling the wish of donors to give the gift of life.

Advantages to Live Donor
Kidney Transplants


No medals.  No ticker tape
parades.  Just the everlasting
thanks of another human being.

There are many advantages to live donor kidney transplants, starting with the fact that it may be the recipients only hope.

When people have End Stage Renal Disease (ESRD), they don’t have many options.  They can rely on a dialysis machine to remove waste products from their blood, and they can have their name placed on the waiting list that is maintained by the United Network of Organ Sharing (UNOS) for a kidney transplant.

Dialysis is time-consuming and limits a person’s family and work life.  Consequently, kidney transplantation, with its well documented, high rate of success, is the preferred option for most patients.

There are over 60,000 people on the UNOS list waiting for a kidney today.  Only 10,000 deceased donor kidneys become available every year.  Less than 8,000 eligible deceased donor kidneys were available last year.  Thus the wait for a deceased donor kidney can take up to four years or more.  Obviously, this type of donation alone can not ease the shortage.

Thanks to newer surgical techniques, the number of people interested in live kidney donation has been increasing.  That’s very good news.  There are many advantages to a live donor kidney transplant.

Unlike a deceased donor transplant, the live donor transplant can be planned ahead of time, when the recipient is in better health.  The kidney can be transplanted minutes after being removed from the donor instead of hours as is the case with deceased donation.  Most important of all, the long-term survival rates of live donor transplants are much higher.

Receiving a live donor transplant may also allow a patient to avoid dialysis altogether if the transplant is done when the kidney failure is first found.

There is one more, very important advantage to live donation – using a live donor organ frees up a precious deceased donor kidney for someone else who doesn’t have a live donor.

The following pages will answer some of the questions asked most often about live kidney donation.  We’re sue you’ll have some of your own.  Specially trained members of the transplant team are ready to answer any questions you may have.  You’ll find their telephone numbers at the end of the booklet.

 

David Jenkins and Michael Coonfield

 Transplant recipients and members David Jenkins (Left) and Michael Coonfield (Right) of Team Maryland United States Transplant Olympics

Choosing to be a Live Donor

The greatest gift.

Who can donate?

In the past, only people related to the recipient could be a donor.  Now, living donors can be friends, in-laws, neighbors, co-workers, fellow church members, even complete strangers.

You only have to be healthy, willing to donate and at least 18 years of age.  There are, however, certain medical problems that would make you ineligible, such as a history of high blood pressure, cancer, diabetes, kidney or heart disease.

What are some concerns donors have before deciding to donate a kidney?

Many donors are so comfortable with their decision, they have no concerns, but almost everyone has questions about the donation process.  How much discomfort is associated with the surgery?  How long will it take to get better?  How much time will it take away from work?  Will the donor incur any cost?  Some donors express fear.  Some even feel guilt about being afraid.  Whatever concerns you have, the transplant team is available to help you get the answers you need.  Your decision must be the right decision for you.

Ed and Allegra Williams

    “Allegra, I am going to donate my kidney to you…I see her doing all the things she did before.  She is my hero”

Ed Williams, kidney donor to his daughter Allegra

How safe is the donor surgery?

While the laparoscopic technique has made the operation easier for the donor, it is still major surgery.  As with any operation, you will have pain and discomfort.  There is also a risk of bleeding and infection.  But these problems will be fully discussed before you consent to the operation.  The chance of death for living donation is 0.06 percent in 10,000 donors.

What are the benefits of being a donor?

Only someone who has been a donor can truly answer.  Here’s what some of them have to say.

“Donating a kidney was a revelation – I learned much more about kidney disease.  This experience was spiritually uplifting and quite an emotional boost knowing I made a very tangible difference in someone’s life”

John Temple Altruistic Donor

“The benefit of donating a kidney was knowing that I could help Bob return to his normal life which includes dentistry and travel.  Our family was able to get back to normal and Bob’s patients were thrilled to have him back.  I also benefited by knowing that I did the right thing spiritually.  I feel I answered to the call of God just as I did when I went to the seminary.”

Tom Parker:  Donated a Kidney to his brother Bob.

“It was such an uncertain and frightening time when we first learned that Belinda would have to be on dialysis and need a kidney transplant.  My decision to volunteer was an easy one, especially after the procedure and benefits to the recipient were explained.  I am so thankful that I was available as a donor…This was such a positive experience.”

James Bailey, III Kidney donor to his daughter, Belinda

The Donor Evaluation

There’s only one rule:  Nothing is more important than your health.

Once you have decided to become a donor, you will meet with a transplant nurse coordinator to plan your evaluation.  Your health is our number one concern.  A thorough medical exam will be scheduled to make sure you are healthy enough to be a donor.

Donor evaluation is divided into four phases:

Blood and Tissue Type Matching
Initial Screening Tests
One-Day Donor Evaluation
Scheduling the Donor Surgery

Blood and Tissue Type Matching

You will have blood drawn to see if you and the recipient have compatible blood types and to check the degree of your genetic matching in what is called a Human Leucocyte Antigens (HLAI test.  If your blood type is not compatible with the recipient, it may still be possible for you to donate your kidney.  Information about Blood Type Incompatible (ABOI) Transplants is covered later in this booklet.  See Table 1 for compatible blood types.

We use the HLA test to predict the likelihood of your kidney being rejected by the recipient.  We mix, or crossmatch, both of your blood cells.  If the recipient’s cells “kill” your donor cells, the crossmatch is positive.  If not, it’s negative.  A negative crossmatch means it’s highly unlikely that your kidney will be rejected.  A positive crossmatch means that it probably will be.

Tom and Bob Parker

“Our family was able to get back to normal and Bob’s patients were thrilled to have him back.  I also benefited by knowing that I did the right thing spiritually.”

Tom Parker (Left) Kidney donor to his brother, Bob

In the past, when a positive crossmatch occurred, you could not donate.  Today, an exciting new advance in immunology can often eliminate positive crossmatches.  This Highly Sensitized Patient Protocol is described in more detail later in the book.

Compatible Blood Types

Initial Screening Tests

During initial screening, blood work and urine tests will be done.  You’ll collect a 24-hour urine specimen that will show how well your kidneys are working.  Your blood will be checked to see what viruses you have been exposed to in the past.  Women must also provide the results of a current pap smear and mammogram.  All donors 50 years and older are required to have a colonoscopy.  More tests may be added based on the results of this initial screening.  If you don’t live close to Johns Hopkins Hospital, these tests can be done in your hometown.

One-Day Donor Evaluation

If no problems are found, a One-Day Donor Evaluation is set up at Johns Hopkins Hospital.  You’ll meet with the Transplant Nephrologist, the Transplant Surgeon and a Psychologist.  You’ll also have a chest x-ray, and EKG and a 3 Dimensional CT Scan of your kidneys.

This evaluation takes the entire day, so if your traveling distance is greater than 3-hours, we suggest you come to Baltimore the night before.  Ask your transplant coordinator for a housing and hotel list.

Scheduling the Donor Surgery

The Transplant Committee will review the results of your tests.  If your evaluation shows you would be a good donor and you wish to proceed, a surgical date will be set in preparation for the transplant.

In most circumstances, the transplant is scheduled four to six weeks in advance.  This allows you to arrange time away from work, childcare, school schedules, and other daily responsibilities.  This wait also gives the recipient’s health time to stabilize.

If you are from out of town, our housing coordinator will help you find a place to stay in Baltimore.  Donors are usually in the hospital for three days after their surgery.  Donors should plan to stay in town for one week after discharge.

Two weeks before your surgery, a visit is scheduled for both the donor and recipient at our Pre-Operative Evaluation Center.  A final crossmatch will be done one week prior to surgery to make sure your tissue is still compatible.

Transplant Day

And for the recipient, a new birthday.

On the day of your surgery, you will report to the Same Day Surgical Unit.  The surgical nurses will take your blood pressure, heart rate and temperature.  Your past medical history will be reviewed and an IV started.  You’ll meet your surgeon and the anesthesiologist who will care for you during your operation.  You’ll have plenty of time to ask any last minute questions.  Finally, you’ll sign the consent form, and get ready to give the greatest gift.

Donor Surgery

Your surgery is called a Donor Nephrectomy and takes approximately four hours.  Don’t be surprised if you’re asked to walk into the operating room.  This is quite normal for healthy people who are about to undergo surgery.

The anesthesiologist will give you medicine to help you fall asleep.  You will be under general anesthesia and asleep during the entire surgery.  Once you are asleep, a tube will be placed into your mouth to help you breathe and a urinary catheter will be placed into your bladder to collect urine.  During the surgery, you will receive 6 to 10 liters of IV fluids to keep your kidneys working well.

Most often, your left kidney is removed.  Your surgeon makes three small incisions about one-half inch long, in your abdominal area.  (See diagram 1).  Through one incision, your abdomen is inflated with carbon dioxide to make it easier to see the kidney.  Through the other incision, a tiny camera and small surgical tools are placed.  The kidney will be removed through the fourth incision approximately 3 inches below your belly button.

Body Image

While all this is happening, the recipient is being prepared in another operating room.  When the recipient’s surgeon reports that everything is ready, your kidney will be removed.

Initial Recovery In the Hospital

You will awake in the recovery room, but you will still feel sleepy.  You might also feel a little nauseous.  That’s normal and due to the anesthesia.  Once you are stable, you will be taken to your hospital room.

Your breathing tube will be removed while you are still in the operating room, but the urinary catheter and IV will remain in place for one day after surgery.  You can expect to feel puffy from all the fluid you were given during surgery.  You will have gained a little weight, because each liter of fluid is equal to 2.2 pounds.  Don’t panic, you’ll return to your normal weight in just a few days.

Pain medication is available through an IV or an injection.  On the second day after surgery, or once you can tolerate food, you will be given pills to control your pain.  You may also have some pain in your shoulders from the gas used to inflate your abdomen.

Soon after surgery, you’ll receive a regular diet.  You’ll also be urged to get out of bed.  Walking leads to faster recovery and helps prevent infections and blood clots in your legs.  By the third post-operative day, if there are no problems, you will be able to be discharged from the hospital.

Recovery At Home

You will experience some abdominal pain.  This pain should be easily relieved with either a prescribed medication or over the counter pain relievers.  In fact, most donors report they no longer need any medication three weeks or even sooner after surgery.

We recommended that you don’t drive for two weeks, and don’t lift anything heavier than 20 pounds for six weeks.  You are encouraged to walk several times a day, both for exercise and to hasten recovery.  If you have child care responsibilities, you’ll need some assistance during the first week.  You can expect to return to work after three or four weeks.  It is common for many donors to feel easily fatigued for up to two months after surgery.

You can also expect to feel a variety of emotions from elation to a slight “let down”.  This is completely normal.  You have just experienced an intense emotional and physical event.  Be patient with yourself and your progress.  Recovery and healing take time.

A post-operative visit with your surgeon will be scheduled for the following month, however, if you want to talk sooner, don’t feel like you have to tough it out.  You’re already a hero.  Your transplant team is there to help you, even after the donation.

   “I receive the best present in the world each and every day when my son comes down the stairs, healthy and energetic.  At the end of each day, I have received a far greater gift than I gave.”

Dennis Bonetti: Kidney donor to his son Matthew

Dennis and Matthew Bonnetti

Your Future After Donation

Turns out, what you give up is very little, about the size of a kidney.

Make no mistake, donating a kidney is no small step.  You have to wonder how this is going to affect your health, your future, your life.  Here are the answers to the questions we hear the most.

Will I be able to live a normal, healthy life after donating a kidney?

Absolutely.  Years of research and follow up studies with live kidney donors confirm that donating a kidney does not have an adverse effect on future health in any way.  It won’t shorten your life, or change it, for that matter.  Donors lead active lives with only one kidney.  They drive, work, exercise, serve in the military, in short, and do just about everything they did before.  After your initial recovery, we recommend a yearly routine physical by your family physician.

Will I be able to get insurance afterwards?

A national study of insurance carriers found donors had very few problems getting insurance.  Only 4 percent had difficulty getting health and life insurance.  And only 2 percent had problems getting disability insurance.  On rare occasion, donors may be asked to wait from one to three years after donation before being issued a policy.  If you have difficulty with insurance, please talk to the transplant office and we will help you with this matter.

Can I have children?

According to research, there is no reason to believe that donating a kidney will affect your ability to become pregnant or father a child.  In fact, the data shows almost everyone who tried to have children after donation was successful.

What costs will the donor incur?

All bills from the donor evaluation, surgery and post-operative follow-up care are taken care of by the recipient’s insurance.  Some costs that are not covered by private insurance or Medicare include travel costs, lost wages, childcare and daily living expenses.  That’s why it is important that you discuss all of your financial questions with your transplant coordinator before the donation process.

Mary Capps

  “I am happy to have given the gift of life.  I am able to see the results of this gift for an ongoing period of time.”

Jeff Hobson: Kidney donor to his sister, Mary Capps      

Jeff Hobson

The Incompatible Kidney Transplant Program (InKTP)

Johns Hopkins is leading the way in innovative strategies for helping people with end stage renal disease receive a kidney transplant.  Through the Incompatible Kidney Transplant Program (INKTP) described in the section, patients who, previously, had little hope of receiving a live donor kidney transplant and faced long waiting times for a deceased donor kidney can now be offered four promising opportunities for transplant.

Blood Type Incompatible Transplant Program

Now even people with an incompatible blood type with the recipient can donate their kidney.  The evaluation and surgery for the donor are just as we explained earlier, but to prevent immediate rejection of the kidney, the recipient’s blood must have antibodies to the donor blood-type removed.  This is done before the transplant with a process called plasmapheresis.  Plasmapheresis removes antibodies from the recipient’s blood that would be harmful to the donor kidney.  To keep the antibodies from reforming, the recipient’s spleen may be removed at the time of the transplant.  This is occasionally done because the spleen is the site where most of the antibody is produced.  The patient receives several plasmapheresis treatments post-surgery.  Once at home, the patients use the same anti-rejection medications used for all kidney recipients.  Recipients who
received blood-type incompatible transplants over the past seven years are experiencing normal kidney function.

Barbara and Lindsay Simms

“No one knows how lucky I am.  I’m going to get to see Lindsay start kindergarten soon and to go her high school prom.  I don’t need any thank you.  I get to see “thank you” every time I see Lindsay.”

Barbara Simms, Kidney donor to Lindsay, the daughter of a close friend.

     

Paired Kidney Exchange Program

This is an exciting program to match blood-type incompatible donors and recipients.  For example, a husband needs a kidney and his wife wants to donate, but their blood types are not compatible.  Their names are put into a database and their blood types are matched with another living donor and recipient whose blood types are also not compatible.  It sounds complicated, but it’s really quite simple.  (See Illustration).  Now two people who faced a long wait for a cadaver kidney can receive a live donor kidney transplant instead.

Paired Kidney Exchange Program

If you know your blood type is incompatible with your recipient, you’ll want to find out more about these programs.  Just call the transplant office at the number listed at the end of this booklet.

Highly Sensitized Patient Protocol

People who have had a previous transplant, pregnancy or blood transfusion develop antibodies in their blood that won’t force an immediate rejection of the transplanted kidney, but will cause one sometime after the transplant.  These patients are called “highly sensitized”.  These patients may wait a very long time for a deceased donor kidney.  Many highly sensitized patients have live donors willing to give them a kidney.  However, when the recipient’s blood is mixed with the donor’s blood, the highly sensitized recipient’s antibodies act to kill the donor’s cells.

Through the highly Sensitized Patient Protocol, the recipient’s blood can be cleansed of these antibodies with plasmapheresis.  A successful live donor transplant is then possible.  The long-term survival of the transplanted kidney is identical to that of a recipient who is not highly sensitized.

Altruistic Stranger Donation

It’s one thing to offer a kidney to someone you love, but imagine giving it to someone you don’t even know.  That’s exactly what one transplant nurse did in 1998, when Johns Hopkins hospital performed its first altruistic donor kidney transplant.

This nurse wanted to show the world that being a live donor was a safe and rewarding way to help the thousands of patients waiting for a kidney.  And did she ever!  Since her donation, over 250 people from 30 different states have expressed interest in Altruistic Kidney Donation at Johns Hopkins.  A total of 10 altruistic kidney donor transplants have taken place since the first one in 1998.  All from just one selfless act.

If you’re thinking of being a live kidney donor, we hope this booklet has given you the basic information you need.  As always, the Johns Hopkins Hospital Comprehensive Transplant Center is ready to answer any of your questions.

John Temple

“I made a very tangible difference in someone’s life.”

John Temple: Altruistic stranger donor

Comprehensive Transplant Center Telephone Directory

Johns Hopkins Hospital

Main Number:
410-955-5000

Abdominal Transplant Office

Kidney Live Donor Evaluation
1-888-304-5069, choose Option #4
410-614-5957
Incompatible Kidney Transplant Program (InKTP) Live Donor Evaluation
1-888-304-5069, choose Option #3
410-614-5957

Fax number:
410-614-6906

Transplant Patient Support and Outreach Office:

410-614-5700

Transplant Insurance Coordinator Office:

410-955-5224

Dedication:

We would like to dedicate this book to the courageous men and women who steadfastly devote their lives to the care and protection of their fellow human beings.  A hero each and every one…

Johns Hopkins Comprehensive Transplant Center
720 Rutland Avenue, Turner 36
Baltimore, Maryland
21205

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