In His Own Words:
A Donor's Experience

At a recent Walk for PKD, my wife and I stopped at the transplant information table and talked to the lady at the table and some others who stopped by. They were all organ recipients, or potential recipients, and shared their experiences and conditions. It was amazing how different their experiences were.  Listening to others made me appreciate our transplant experience, which I would like to share from another perspective.  I was my wife's living donor and want to encourage others to consider this option and let them know what to expect.

It's been over a year since I donated a kidney to Cris. My wife suffered from Polycystic Kidney Disease and was getting close to renal failure in the fall of 2005.  She suffered chronic discomfort and was subject to numerous kidney and urinary tract infections for several years.  Her kidneys were very large and covered with cysts.  Cris' mother suffered from the same disease and went through years of dialysis and a failed transplant, so we were familiar with our options.  Cris' condition required the removal of her kidneys before a transplant could be performed. This created some timing issues that we wanted to avoid.  The kidneys would have to be removed and a recovery period would be required, then she would have to be put on the waiting list for a kidney. This could result in years of dialysis.  I told Cris I wanted to be tested as a possible donor. This way, everything could be planned and scheduled.

Orientation
We live in Winston-Salem, North Carolina and Cris was lucky enough to be a patient of Wake Forest University Physicians and North Carolina Baptist Hospital.  The system this transplant team employs seems more patient-friendly than those described by other transplant patients.  We attended an orientation presented by a transplant coordinator that included videos, handouts, and details and tips from some of her past experiences with other transplants.

We also met with a social worker.  He was trying to determine if Cris was a good candidate for a transplant from an emotional point of view.  How did she feel about another person's organ inside of her body and would she follow the doctors' instructions and regularly take her medication?  I was given a two-page list of all of the possible negative outcomes from donating in order to test my resolve.  We were told that donors sometimes change their minds at the last minute, and part of this interview was to make sure I wouldn't.  The majority of these risks are consistent with those involved with any surgery that includes anesthesia.  The only one I really had to consider was the risk that I might develop a kidney problem later in life.  There is a history of high blood pressure and diabetes in my family, so it could be relevant.  As always, people must weigh the risks when donating an organ.

Finally, we met with the financial representative from the hospital.  She explained that Medicare covers the cost of the transplant and that Cris would remain covered for three years following the transplant.  During this time, she could apply for the Medicare D prescription plan.  She went over what was covered and all co-pays involved with the transplant.  Her main objective was to make sure we could pay for Cris' prescriptions, since many transplant rejections are a result of a failure to take the medication.  It's a shame that money is an issue when trying to extend a life or improve the quality of that life.  There are a lot of economic considerations for the recipient, but this is about the donor experience.  I never received a bill for anything related to my care  from the initial test to my final check-up four months after the surgery.

Tests and Preparation
From the information collected at these interviews, the transplant team decided that we were emotionally and financially equipped for the transplant.  I was scheduled for a series of tests to determine if I was a match and healthy enough to donate.  I had an EKG, a chest x-ray, and they drew nine vials of blood for tests.  I was in the hospital less than two hours for all of this.  We were a blood type match, matched 2 out of 6 antigens, and passed the cross-match test.  It was a go!

At first, my meeting with my surgeon was not what I expected.  He again made me aware of all of the risks.  It was as though he was trying to talk me out of the operation.  It was just one more test of my resolve, and once he was convinced, the examination proceded in a more positive light.  He explained the procedure and the rest of the tests I would need.  The donor is assigned a different surgeon than the recipient to reduce the likelihood of a conflict of interest.  My welfare was the main concern of my doctor, just as my wife's health was her doctor's responsibility.  There were two things he informed me of that concerned me  I would have to get down to 220 pounds and deal with a catheter after the operation.  Since I weighed over 260 pounds, I knew I had my work cut out for me.  If I didn't lose the weight, he still might be able to remove the kidney, but not laproscopically.  The risks and recovery time from laproscopic surgery are significantly less than with regular surgery.

From the information we read and discussions with our doctors, we learned that there are some advantages for the recipient of a kidney from a living donor over one from a cadaver.  There is a lower rejection rate with a "live" kidney.  The "live" kidney starts working easier because it is exchanged so quickly that it may not even stop functioning.  Typically, the donor and the recipient are operated on in adjoining rooms separated only by a door.  The donor goes in ahead of time, followed shortly by the recipient, and by the time the kidney is removed, the recipient is ready.  It can be as short as ten minutes that the kidney is actually out of a body.

The final tests involved the injection of a fluid through an IV and the inspection of my kidneys at work.  My kidneys were x-rayed before the fluid was introduced.  After the fluid was injected, I was put into something similar to a CAT scan to examine my lower body.  My kidneys were X-rayed again.  I was asked to empty my bladder, and X-rayed one last time.  Everything was fine.

Cris had her kidneys removed in March of 2006 and had about a two-month recovery period.  By May, I had lost 40 pounds and was at 225.  The doctor said this was close enough, so blood was drawn to verify one last cross-match test and the transplant team met to schedule the date for the operation.

Surgery and Recovery
Cris and I were admitted to the day hospital Monday afternoon for our Tuesday morning surgery.  They took blood once again  you have to get used to getting stuck.  Since I wasn't going to get to eat the next day, the nurses brought me lots of snacks before my midnight deadline for eating and drinking.  If you're donating an organ to your wife as I was, every female you come into contact with during this experience will think you're the nicest guy in the world and give you all the attention you want.  We were on the same floor, so we spent some time together that night and Cris came to see me off when they came to get me about 6 a.m.  I was taken to the preparation room where the anesthesia was administered and the next thing I remember was waking up in the recovery room with my daughters by my bed.  Both of our surgeries were done and they told me Cris was doing fine, too.

When I woke up I was drowsy and drifting in and out.  There was a device blowing oxygen below my nose.  I can't tell you how long I spent in the recovery room.  When I got into my regular room I felt no ill effects from the anesthesia, but was extremely thirsty.

Tuesday night I started to experience intense pain in my left shoulder.  It scared me a little because I've always heard that pain in the left arm can be associated with a heart attack.  The nurses and interns that visited had no explanation, but assured me there was nothing to worry about.  It was particularly painful when I used the "incentive" breathing apparatus they give you to prevent blood clots in your lungs. I also received Hepron injections after the surgery to reduce the risk of blood clots.  Wednesday afternoon I finally saw my doctor, who explained the pain. When they do the laproscopic procedure, the area of the surgery is inflated with gas to allow more work space. During recovery, this gas accumulates in the upper body, resulting in some pressure and consequently, some pain.  I was scheduled to go home on Thursday, but had to stay and extra day because of a fever.  The shoulder pain was gone by the next evening.

The most difficult part of the recovery was dealing with the healing of the six-inch or so incision made across the lower abdomen where the kidney was removed.  Your doctor will want you to spend some time sitting up in a chair and walking as soon as possible.  This was much easier after they removed the catheter Wednesday morning.  There was no pain in having the catheter in or having it removed, it was just awkward to maneuver around with it in place.  You can't really sit up, so you learn to get on your side and swing your legs to get in and out of bed.  The first 24 hours I had a button that allowed me to dispense pain medication through my IV.  I would give myself a dose before getting out of bed, but didn't need it when just lying in bed.  They also wanted me to wear leg massagers whenever in bed, so I had to deal with getting them off and on every time I got up.  It's the "sit-up" motion that is painful for a few weeks.

Long-Term Recovery
We were both discharged Saturday morning.  Fortunately, my sister came to stay with us for a couple of weeks during our recovery.  I thought Cris and I would be able to handle all of the simple household tasks, but I was wrong.  When you can't bend over or drive, and need to spend most of your time in a reclined position, you need some help.  We'll never be able to thank her enough.  The only medications I was given were a stool softener and some pain medication.  For the first two weeks after the surgery, I found that I could sit up at the computer or watch TV for an hour or two, but then had to lie down for awhile.  Cris and I would go for walks around our development, but it was pretty exhausting.  After another two weeks, though, I was ready to return to work.

Final Thoughts
I have described the details of my experience so that potential donors can know some of the things to expect.  While I talk about some pain and complications, none of what I went through was severe enough to prevent me from doing it again (if I could) or recommending it to others.  I will have my wife for many years to come, and my kids still have their mom.  Cris will not have to endure the ordeal of dialysis and can experience a better quality of life.  When people hear what I've done, they seem to be genuinely impressed with the generosity of my actions.  That's nice, but if it inspires anyone else to do the same, it's great!  I certainly didn't donate for any personal recognition - it's just the right thing to do for someone you love.  Our social worker put another way that also makes the act worth doing.  He said that donation of this type is like donating two kidneys  one for Cris, plus the one that she would have gotten that went to someone else. I hope people out there will consider being a living donor.

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Posted February 4, 2008