Kathryn’s Story

Individual topics are identified with headings, so browse and read those topics that are of interest to you.

Introduction

My name is Kathryn, and I was a liver lobe donor on December 18, 2003, at Mayo Clinic Hospital Scottsdale (Arizona). I hope this account of what I’ve learned and experienced during this extraordinary journey will help others on their way to becoming living organ donors.

Learning that My Friend Needed a Transplant

In November, 2003, a close friend of mine, who was very ill, discovered that she was suffering from an inherited liver disease. The only cure was a cadaveric liver transplant (a transplant from someone no longer living) or a living donor liver lobe transplant. At the time, I was fifty-three years of age, and my friend was fifty-seven. I had never heard of living donor liver lobe donation before, so I had a lot to learn.

About Living Donor Liver Lobe Transplant

How It Works Except in unusual circumstances, each person is born with a liver that contains two lobes. For a living donor liver lobe transplant, the donor contributes one lobe to replace the ill person’s liver. The right lobe, which is about 60% of the liver, is usually used for adult-to-adult transplants. After the donation/transplant, each lobe (one in the donor, one in the recipient) grows to almost the size of the original liver within just a few weeks and can provide the functionality of a normal liver.

How Donor Medical Expenses are Paid All of the donor’s transplant-related medical expenses are normally covered by the recipient’s insurance. It is unlawful in the United States to sell organs, but reimbursement by the recipient of some expenses such as travel, housing, and lost wages is lawful.

Signing Up

After reading the Mayo Clinic booklet about liver lobe donation, I called Mayo Clinic Hospital Scottsdale and told the transplant coordinator that I was interested in being evaluated as a donor for my friend. The coordinator asked me a few questions, including my blood type, and added me to the list of possible donors. Then I waited and wondered if I would be called.

The Call

Only one person was evaluated at a time due to the evaluation’s high cost. After several potential donors were disqualified, the transplant coordinator called me the week before Thanksgiving, 2003, and asked if I was still interested in being evaluated.

Telling My Son

My grown son, who lives in California, visited me at Thanksgiving. Since I had not yet told him that I was considering being an organ donor, he was completely “in the dark.” One day while he was still visiting he asked me nonchalantly, “So, Mom, what are you going to do this coming week?” I told him that I was going to be evaluated to be an organ donor. This wasn’t exactly the response he expected! He was very supportive and proud which made everything so much easier.

What My Donor Evaluation was Like

Scheduling Since I wasn’t working and live quite close to Mayo Clinic Scottsdale, it was possible for my tests and interviews to be completed in about ten days. This short length of time for an evaluation is probably not representative, but my personal circumstances and Mayo Clinic’s efficient scheduling system made it possible.

Physical Tests Performed My physical screening tests included a chest x-ray, T.B. skin test, carotid ultrasound, colonoscopy, stress echocardiogram, EKG, many blood tests, urinalysis, abdominal MRI, abdominal CT scan with iodine contrast, and liver biopsy. I was also asked if I had had a mammogram during the previous twelve months. The test I most feared, the liver biopsy, was nearly painless.

Interviews & Psychological Testing I had interviews with the transplant coordinator, surgeon, hepatologist, social worker, and psychiatrist, and I took two psychological tests.

Depression Not an Automatic Disqualifier My history of depression was not an automatic disqualifier, but it was a condition that the transplant team spent more time exploring. I had been appropriately and successfully treated, and my personal physician wrote a letter on my behalf indicating that she did not think donating would be a mental health risk for me.

Weight I was somewhat overweight, and my BMI was 28 at the time. My weight was never raised as an issue.

Getting Questions Answered I wrote a detailed question list, and the transplant team answered all of my many questions to my satisfaction.

Touring the Hospital I asked to see where I would be recovering as a patient and was readily shown the ICU (where I would be for about 24 hours after surgery) and the patient rooms. I also became acquainted with one of the physician’s assistants that would help with my care.

Talking with a Donor At my request, the transplant coordinator arranged for me to talk with a woman who had donated at Mayo Clinic Hospital Scottsdale. The donor called me, and it was reassuring to hear about her experience and be able to ask her questions about the surgery and recovery.

Staff Respect and Support Throughout my evaluation I was always treated with a great deal of respect. I was able to have my partner with me during all of my interviews to be an extra “set of ears,” take notes, and ask questions that I didn’t think of.

Making the Decision to be a Donor

Decision Made Gradually I did not instantly make the decision to be a donor since I knew nothing about what being a liver lobe donor entailed. It was important to me (and my partner) to learn as much as possible about what the donor experiences, the risks, and the potential outcomes so I would have the information I needed on which to base a decision. We used the Internet extensively and had discussions with the Mayo transplant team members. As the evaluation progressed and as I learned more, I gradually felt more strongly that I wanted to be a donor.

Throughout this time, the thought loomed large that my friend bore 100% risk of dying without a transplant soon. I don’t think it’s possible to make a purely objective decision, but I did need to know more about being a donor before I decided.

Dealing with Indecision At one point, I became particularly overwhelmed. What helped me was to write down all of my fears, make a list of the pros and cons, and list the information I was lacking that I needed to have before deciding. Writing put things in perspective and made the decision-making process more manageable.

Transplant Committee Approval and Scheduling the Surgery

After my evaluation determined that I was in excellent health, the hospital’s transplant committee approved me as a donor. On December 11th I was asked if I would donate to my friend, I said “yes,” and the surgery was scheduled for December 18th. From what I’ve read on Living Donors Online, scheduling surgery so soon after the transplant committee’s approval is not necessarily typical. It just happened that both my friend and I were eager to have the surgeries as soon as possible, and there was an opening in the hospital’s operating room schedule.

Waiting for the Big Day

The week before surgery seemed like the longest week of my life. All I could think about-day and night-was the surgery. I had difficulty sleeping and found that keeping a personal journal was quite helpful. When I couldn’t sleep, I’d write down everything that I was thinking about, and then I was able to relax and go to sleep.

Telling Others Since there was only one week between being approved and the surgery, I needed every minute to prepare practically, emotionally, and spiritually. I intentionally limited the number of people I told about the surgery to keep things simpler. There wasn’t enough time to educate other people about being a living organ donor or to convince the potential doubters that it was a good idea.

Preparing for the Hospital Stay and Recovery at Home

Practical Activities I kept very busy that week with numerous practical activities to prepare for my hospital stay and recovery at home. I paid my bills and caught up on my filing. I visited my attorney to update my legal documents and obtained a copy of my Medical Power of Attorney and Living Will to take to the hospital when I was admitted. Though I hoped I wouldn’t die, I discussed with my partner what my wishes were for my funeral, just in case.

I did laundry and attended to personal care, such as getting my hair cut and trimming my nails. I ordered some loose t-shirt dresses from the Hanes Web site to wear when I got home since I knew I would be sore. I bought a warm bathrobe and packed my bag for the hospital.

Staying Healthy It was flu season, so my friend and I decided to stay home that week. Neither of us wanted to be exposed to anything that would make us ill and could delay the surgery.

The Emotional Roller Coaster Both before and after surgery, I felt like I was on an emotional roller coaster. My feelings alternated between being grateful that I could help my friend, excited and hopeful- and worried about my friend, anxious, scared, and sometimes overwhelmed. I found Living Donors Online only days before surgery, and it was very reassuring to learn from other donors that the emotional roller coaster was normal.

I had a lot of fear, especially of physical pain. My friends reminded me that to be afraid was normal and that they’d be worried about me if I wasn’t afraid. The three biggest fears I had for myself were:

1. I was afraid of the physical pain that I imagined I’d probably experience. I had had other surgeries, but they were all done laparoscopically, and the thought of a twelve-inch incision was very scary to me.

2. I was afraid of the possible immediate consequences of the surgery, such as a stroke, that could have a long-term impact on my life.

3. I was afraid of future unknown consequences that the medical profession might not be aware of due to lack of long-term follow-up data.

Fear for My Friend Every donor must face the possibility that the recipient could die. That was not something I wanted to think about. It was more comforting to think, “Those complications are unlikely to happen in our case.” Perhaps that was a way of protecting myself so I could keep moving forward.

Faith Helps Throughout the evaluation and time before surgery, I believed that I was being guided by my higher power, and the way everything progressed so smoothly was reassuring and contributed to my optimism about the transplant outcome. To calm my fear, it helped me to keep in mind something I’d heard years ago: “Courage is fear that’s said its prayers.”

It’s a Go By the time of the surgery all of my questions had been answered, I felt confident that my legal and financial affairs were in order, and I felt satisfied that my last wishes were known, if it came to that. I no longer had any ambivalent feelings about donating.

The Day Before Surgery

Eating On the day before surgery I ate very lightly and drank juices most of the day so that my intestinal tract would be somewhat empty before surgery. I wanted to get a head start in warding off constipation that can happen after surgery.

Laxative As additional constipation prevention, at my surgeon’s suggestion I took a dose of Milk of Magnesia before going to bed.

At the Hospital

At 6:00 a.m. on December 18, 2003, my partner and I met my friend, her husband, and two of their three adult children in the surgical waiting area at the hospital. It was a very special, indescribable moment, like none other. We hurriedly took some pictures, and then my friend and I were off to pre-op.

Pre-Op We were next to each other in pre-op so we had a chance to talk and support each other. I was both excited and apprehensive. Since I had been in the hospital for surgery before, I knew the pre-op routine, and it went as I expected.

Into Hospital Duds / IV Insertion It was time to get ready for surgery. I put on a hospital gown, slippers, and cap, and the nurse put tight surgical leggings on me that help prevent blood clots. A nurse anesthetist then came to insert an IV into the back of my hand. I asked her if she’d numb the area before inserting the IV; she was very considerate and readily did that.

Anesthesiologist Visit Next the anesthesiologist came by to talk with me about the anesthesia procedures and to ask about any allergies or past problems with anesthesia. I gave him a copy of my anesthesia records from other surgeries. Since the donor I had spoken with by phone had told me that an epidural (anesthesia in the spinal area) had helped ease her pain, I asked him about having one. He said epidurals at Mayo Clinic Hospital were done in the past for this procedure, but weren’t done anymore (for medical reasons which I’m not real clear about).

Visiting with Family in Pre-Op My partner and my friend’s family came into the pre-op area after my friend and I were ready for surgery. In a few minutes, the nurse anesthetist added a potent relaxation drug to my IV, and I don’t even remember being wheeled into the operating room.

Surgery

Treasured Objects Accompanied Me In pre-op and surgery, I was permitted to have with me a few small comforting items that were meaningful to me such as pictures of my son and partner, a religious medal, and an angel pin. My surgeon had previously asked me what kind of music I wanted played while I was in surgery! Classical, of course!

Length of Time in Surgery Both my friend and I spent about four to five hours in surgery. My surgeon told me that the amount of time that the donor and recipient are “open” is kept to a minimum because the longer the patient is open, the greater the risk of infection.

Gall Bladder Removal My gall bladder was removed which is normal for living donor liver lobe surgery.

No Blood Transfusions I did not have any blood transfusions since cell-saver equipment was used. I was told that additional blood is usually not needed.

No Drains I did not have any drains. My surgeon told me he doesn’t like using them in donors because they can contribute to infection.

Intubation This is a procedure during surgery in which a tube is inserted through the mouth into the airway to help the patient breathe. This was done while I was under anesthesia, so I don’t remember it being inserted in surgery or withdrawn before I went to ICU. (Some people indicate that they have a sore throat after having been intubated.)

ICU

Equipment I Was Connected To I came out of surgery with an oxygen sensor on my finger, the IV in the back of my hand, a central line (similar to an IV) in my neck, a urinary catheter, a naso-gastric tube in my nose, and a morphine pump for pain.

Length of ICU Stay I was in ICU for about a day-and-a-half where I was monitored continuously. I have no recollection of having been in ICU, and the next thing I remember is being in my room.

Recovering

Help at the Hospital During my hospital stay, my partner helped me with practical things and watched out for any medical problems that the doctors or nurses might miss and should know about. It was comforting to know I had an advocate when I was hardly able to speak for myself. Friends dropped by, but I have only a dim recollection of their visits because I was quite groggy.

Pain The abdominal pain was intense the first couple of days, though not as bad as I imagined before the surgery. The morphine pump helped but did not totally overcome all pain. I also had some pain in my right shoulder which seems to be a common complaint. The staff made every effort to make me as comfortable as possible, and my pain was never ignored. After the morphine pump was removed, all of my pain medication was given orally or through the IV. I was very happy not to have any injections in my hips.

Equipment Starts Coming Off The naso-gastric tube and the urinary catheter were removed with only slight discomfort during the first day or two that I was in my room. The IV and central line were removed towards the end of my stay.

Walking Where I donated, patients are expected to get up and walk a little during their first day in their regular room. However, I was very sensitive to the anesthesia and pain medication and was so groggy that I was unable to get up and walk as soon as expected. After my pain medication was slightly reduced and the anesthesia started wearing off, I became less groggy. I started getting up and walked around the halls with assistance. I was pretty wobbly, but I walked over to my recipient’s room several times to visit.

Antibiotics Can Create Problems I was given continuous IV antibiotics and had no problems with infection. Antibiotics can eliminate “good” bacteria from the intestinal tract, and I developed severe diarrhea as a result. Thinking it would clear up soon (which it didn’t), I waited until my first follow-up visit two weeks after surgery to tell my doctor. At his suggestion, I ate lots of yogurt for the next few days and the diarrhea went away.

Flowers and Plants Some friends sent me flowers that, unfortunately, I never received. In the unit I was in, live flowers and plants weren’t permitted because they can negatively affect immune-compromised patients.

Staff Responsiveness and Monitoring The nurses and staff were very responsive. It took only a couple of minutes for them to come after I pressed the call button. Physical therapists made me get up and walk around, and I was regularly monitored by the nurses, physician assistants, and the residents. I saw either my surgeon or the hepatologist every day.

Length of Stay I was in the hospital for six nights and went home on Christmas Eve. My friend was released a day or two after Christmas. Since she had to remain in the Scottsdale area for three to four weeks to be medically monitored, she and her husband stayed at the Arizona Transplant House, a large tranquil home in Scottsdale where out-of-town organ recipients can stay for a reasonable cost.

Recuperating at Home

Others Helped I was especially blessed with helpers. In addition to my partner, I had a friend who cooked dinner every night for us for the first week that I was home, and other friends pitched in when needed.

Feeling “Fuzzy” For about two weeks after I came home, I couldn’t think very clearly. I presume this was caused by a combination of taking pain medication and the after-effects of anesthesia which take a while to dissipate.

Sleep Troubles I had a very hard time sleeping which I think had something to do with the anesthesia because this had happened to me after other surgeries. When I stopped taking Oxycodone, I took Ambien before bedtime for several weeks and then gradually tapered off of it. I knew that Ambien, a prescription sleeping medication, can be addicting, so I took it sparingly.

Appetite and Weight When I came home, I noticed that I had gained about ten pounds. I assume it was fluid since I lost it quite quickly, almost overnight, during the second or third week after surgery.

I didn’t have much of an appetite for a few weeks, but I made myself eat healthy food. My mainstays at first were applesauce and vanilla Yoplait. Though I’m a “chocoholic,” I couldn’t stand chocolate for several weeks.

When my appetite returned about six weeks after surgery, it came back with a vengeance! Despite that, I easily maintained a constant weight until about six months after surgery when, unfortunately, I started to gain some weight. I’ve been careful about what I eat, and I’m now at a lower weight than when I had surgery eleven months ago.

Pain Medication and Antibiotics I was quite sore, but the pain was tolerable. For the first couple weeks I took Oxycodone during the day and before bedtime, and then I only took it at night for another week or two. After that I was fairly comfortable with ibuprofen.

I was not given any antibiotics to take at home and did not have any problems with infection.

Nausea I was nauseous when I came home, but not vomiting. This was an ongoing problem for me and later in my story I’ve described my follow-up care at the transplant center.

Still on the Emotional Roller Coaster Some days I felt very happy, and other days I felt quite “blue.” It took a couple of weeks for the feelings to somewhat level out. I also experienced a let-down when the focus of attention shifted from me to the recipient.

Medical Equipment I did not go home with any medical apparatus. Since the toilets in my home are quite low, I found it helpful to use a toilet seat riser.

Showering I was weak and shaky during the first few days I was home, and it was reassuring, when I took a shower, to have my partner within earshot in case I should have a problem, such as falling.

Bending, Sitting, and Standing I was fortunate to be able to bend over with hardly any problem, but at first I had trouble sitting or standing up straight. It was more comfortable to slouch since my right side was sore and my incision “tugged” a bit. When I was able, I made myself sit and stand up straight.

Walking Even when I didn’t feel like it, I tried to walk as much as I could. It always made me feel better both physically and emotionally.

Stretching Out I found that stretching out in a reclining chair was quite comfortable.

Sneezing and Coughing A pillow pressed against my right side or abdomen while sneezing or coughing helped reduce pain.

Hiccups For several weeks after surgery, I was plagued with hiccups. Each bout didn’t last very long, but it was very annoying.

Getting Out of Bed Getting out of bed was a challenge. The method I used was to lie on my left side, move my legs over the side of the bed, and push myself up into a sitting position with my left elbow and left arm.

Heat Compress A microwavable heat compress on my right side, especially at bedtime, was my “best friend” for months.

The Scar and Abdomen

Length and Shape My scar is about twelve inches long. The incision was sutured with dissolving sutures (no staples), and most of it has healed very flat. Some people have the “Mercedes” incision, but mine looks like a ski jump. The top of it starts in the middle of my chest just below the sternum, goes straight down for about three inches, then slopes off to the right and down past my waistline a little bit.

Appearance After the incision healed, I started putting Walgreen’s Scar Gel and Neutrogena Scar Solution strips on it. Both products claim to fade and somewhat flatten the appearance of the scar over time. Four months after surgery my scar was still quite red and noticeable. At six months, it started to fade, and at eleven months, it’s starting to become quite pale.

Burning Feeling For a few days, as the incision was doing its final healing, and occasionally for a few weeks afterwards, I experienced brief burning feelings at the top portion of the scar that felt like a hot poker.

Abdominal Bulge At eleven months since surgery, my abdomen still protrudes a little bit, a situation I hope will reverse itself eventually.

“Different” Feeling Inside I’ve noticed that my abdomen sometimes feels “different” from the inside. It feels a bit crowded in there at times, but not painful. I talked with the hepatologist about this, have been examined, and been told that it’s not any cause for worry. I guess when a person has major surgery, things are bound to feel a bit different.

Numbness I have an area of numbness about the size of my hand on the right side of my abdomen below my scar. When I asked if the numbness would go away, I was told that whatever feeling (or lack of) I had a year after surgery was what I would have permanently. It’s weird not to feel anything when I touch that area or lean up against something.

Lifting, Exercising, Driving, Energy, and Boredom

Lifting and Abdominal Muscles I was told not to lift anything heavier than ten pounds for the first six weeks of recovery to avoid hernias and tearing. Even after three months there were things that I physically could not do, things I couldn’t lift, or certain activities involving abdominal muscles that I found uncomfortable.

Exercising I was told that I could do other types of exercise besides walking as I felt able, with the caution that I should start slowly and work up to more intense levels very gradually. It took several months to do a partial sit-up fairly comfortably.

Driving I didn’t start driving until about four weeks after surgery since I was taking pain medication until then and was quite sore.

Napping At about eight weeks after surgery I stopped taking daily naps, except when I succumbed to an unplanned chair nap in front of the TV.

Boredom Two or three weeks after surgery, boredom set in, and I was looking forward to being more active and independent soon, but my body just demanded REST! It took a lot of patience to wait to feel better.

Length of Recuperation I felt fairly good two months after surgery, although I was still somewhat sore and tired easily. In another three months I pretty much felt like my old self again.

Returning to Work

At two months after surgery I may have been able to have gone back to work if I had had a job, though I still fatigued easily and was a little sore. The soreness was like the feeling I get when I stretch or exercise too hard.

Transplant Center Medical Follow-Up

My surgeon saw me two weeks after surgery. The normal procedure after that, if I had no problems, would have been for me to be seen after the first year and at one-year intervals thereafter.

However, I had a lot of nausea that lasted for months. I returned to the transplant center as an outpatient several times over the period of seven months. My hepatologist made every effort to try to determine the cause and find a treatment. I tried different medications and had numerous tests, including a CT scan, an upper endoscopy, and a motility study.

I was quite concerned that there was something seriously wrong. But after all the tests were done that could be done to try to determine the cause, my doctor concluded that there were no anatomical or functional problems. I was relieved to hear this but frustrated because the source of the nausea wasn’t found. I was told that eventually the nausea would probably disappear on its own, and it has. What gave me the most relief from the nausea while I had it was Prilosec. I took it for several months, then tapered off of it very gradually. I have not had any nausea for about three months.

How I Feel Today

At eleven months since surgery I’m feeling physically well, have no pain, and, for the most part, have my stamina back. I can do most anything I want, though there are rare occasions when I need to ask someone to help me lift something that I may have tackled on my own prior to surgery. Occasionally, my right side gets sore from too much physical activity, though those times are getting farther and farther apart. Very occasionally I’ll have a “tired day” for no apparent reason.

My Partner’s Perspective

(My partner writing) When Kathryn signed up to be a donor to our mutual friend, we understood that if she was chosen to be the donor, I would be the caregiver and major support person and that we would both be very involved throughout the process. Our feelings ran deep about the grave nature of our friend’s illness and the inevitability of her death without a transplant.

However, it is a very large leap from being a name on a candidate list to being an organ donor. That Kathryn might actually be the donor started as only a weak signal in the “possibility” realm. It didn’t start gaining “reality” status in my mind until the day Mayo Clinic Hospital called to ask her if she wanted to be evaluated to be our friend’s donor.

During the evaluation phase, each interview and each passed test added to the “reality factor”, my awareness that she “really” might qualify to be the donor. I think it was during that time that I had the most “troublesome” thoughts, generally thoughts that began with “What if.”

I attended all of the meetings in the testing stage and became a student of the process so that I could properly understand what my role needed to be. I knew that if Kathryn was to become our friend’s donor, life as we knew it would have to be put aside for a time and that we would BOTH have to live the process of her surgery and recovery. I tried to learn as much as I could so I could be a reliable advocate for her in her first days of recovery and a capable caregiver at home.

Once the testing was complete and the decision made that Kathryn was to be the donor, we focused on getting ready, and we endured one week of seemingly endless waiting.

When Kathryn was in surgery my fear was intense. Each week-long hour crawled by in a waiting-induced internal chaos fed by fear and peaked by incredible anxiety. When her surgery was finished, and all was well, the recipient’s transplant surgery began, and I waited again with our friend’s husband, one of my best friends from twenty years of working together.

During Kathryn’s first few days at home, I felt that she needed full-time help. When I had to leave the house once during the first week, I was very uncomfortable. As our friends and acquaintances understood the magnanimity of what Kathryn had done, they wanted to be involved and help. One of our friends cooked meals for us for an entire week, which included the Christmas holidays. All of the help we received from others enabled me to focus on Kathryn’s needs.

A few words of advice to the caregiver and family, which probably applies to all major surgical situations: Arrange for plenty of help-let people help you. It not only helps you and the donor, but it helps the helpers feel good, too. Also, remember to take really good care of yourself. Get enough sleep, take some time to rest during the day, eat healthily, and get some exercise if you can. A few times I forgot to take care of myself and paid the price.

My Recipient’s Death

(Kathryn again) On New Year’s Day, 2004, some friends and I visited my recipient and her husband at the Transplant House. My friend looked great even though it had been only two weeks since the transplant. Everyone was very hopeful and confident that she would fully recover, and we talked about future camping trips together.

As I saw my friend doing so much better after the transplant, I believed the worst was over and did not fully realize how vulnerable she still was to medical problems even after the transplant.

My friend began to experience some complications about three weeks after surgery. Though the liver lobe had been functioning well since it was transplanted, she had to return to the hospital for treatment of bile duct leaks, a common transplant complication.

On February 6th, while still in the hospital, my friend had a severe stroke which was totally unexpected. She held on for a week and then died on Valentine’s Day, 2004. I was heartbroken when I learned of her death.

The transplant coordinator called me several days after my friend’s death, and the hospital’s chaplain called me twice. That was the extent of the action taken by the transplant center toward me concerning my friend’s death. It would have been nice to have received a card or an offer of counseling, but perhaps that was beyond what they considered their role to be.

It would be impossible to overstate the devastation I felt after my friend’s death. I have been sad, disappointed, questioning, angry, and glad I tried. I envy others who have the joy of seeing their recipient restored to good health and who celebrate those special transplant anniversaries.

One of the most unexpected feelings I had when my friend died was guilt. I understood “in my head” that feeling guilty wasn’t logical, but my head and my emotions weren’t in sync for a while. It helped to know that other donors also felt a sense of responsibility for their recipients’ post-transplant problems. I sought some counseling which helped me to resolve this issue.

The memorial service and reception were an important part of starting to come to terms with my friend’s death. The weekend after the memorial service, two friends and I walked in the Transplant House benefit walk which helped me feel that I was doing something positive. My ability to develop greater stamina slowed down quite dramatically for a while after my friend’s death, probably due to the stressfulness of the situation. I continued with counseling for a few months.

Personal Reflections

Many years ago, three good friends of mine died unexpectedly of cancer within five years’ time, all of them women most people would think of as too young to die. When I had the choice of helping my friend by being a liver lobe donor, I was determined that I would not just watch another friend die if I could do something to help.

Though the outcome wasn’t what we’d hoped for, donating has been a privilege and a blessing to me, a life-changing journey of the heart that I think about every day. I’ve been told that my donation has touched the lives of many other people, too. I know that I will never regret being a donor, and given the same circumstances, I’d make the same decision.

I’m grateful that I could give my friend and her family hope and that she could experience a brief respite from some of her problems, if only for a few weeks.

I think it will take a long time to sort out my many thoughts and feelings. I treasure the wonderful memories of my friend. She was a very special person, and I miss her deeply.

Give the Gift of Life

I still support living donor organ donation 100%. For most people it works and is often the only hope because there are not nearly enough nonliving donor organs. Many very ill people who wait for an organ from a nonliving donor die before one becomes available. According to the United Network for Organ sharing, (www.unos.org) 87,268 people in the U.S. are waiting for organs as of November 23, 2004.

Please give the precious gift of life by signing up to be an organ donor when you die and tell your family about your wishes. States have different ways of registering donors. In some states you can sign up when you get your driver’s license. In other states, such as Arizona, people who wish to be donors register with the state’s organ procurement organization via a written form or the Internet. To find out how to become a donor in your state, see http://www.shareyourlife.org/ .

And if you want to be a living donor, follow your heart. You’ll be giving a very special, generous, wonderful gift!

Thank You’s

I am especially thankful for my partner, my son, my siblings, and my friends who have supported me every step of the way. I thank the doctors and staff at Mayo Clinic Hospital Scottsdale for the excellent care I received. I highly recommend them. Thanks, too, for all of the people on Living Donors Online who have provided the support and practical information that has helped me so much.

Kathryn J.
November, 2004

Additional information follows.

The Evaluation Phase

Purpose of Physical Testing Physical testing was done to make sure I was in overall good health and to determine whether my liver was healthy and anatomically compatible with the recipient. It was also important to find out if my liver was sufficiently large so that the recipient and I could each be sustained by one lobe.

Purpose of the Social Worker’s Interview The purpose of the social worker’s interview was to make sure that there will be someone to take care of me during recovery at home, that I had an adequate support system, and that my financial responsibilities would be met while recovering.

Purpose of the Psychiatric Interview and Psychological Tests The psychiatric interview and psychological tests were done to assess my mental health, to determine my emotional ability to handle challenges that could occur, and to find out about the my motivation for donating. The donor experience can be quite an emotional roller coaster in the best of circumstances, and if the recipient becomes ill or dies, there can be a very significant emotional impact on the donor.

Every Aspect Matters Medical suitability is not the only criteria for donor acceptance, and after being a donor, I appreciate that all aspects of the evaluation are important. If there is a physical or mental health issue on which the transplant center staff is focusing heavily, and that might prevent you from donating, try to be thankful that the center is being very thorough in its efforts to protect you.

Getting Questions Answered I saved my list of questions and have sent it to a couple of people that I’ve met on this site. I’d be happy to e-mail it to anyone who contacts me via this site’s private messages. My username is kathj_az.

I think if a transplant center isn’t willing to answer questions to the donor’s satisfaction, that that, in itself, should be a red flag. It’s my opinion that, if you are not given the courtesy of having your questions answered, then perhaps you won’t be given the respect and care that you need during and after surgery.

Sources of Information About Donating Do not assume that the transplant center will automatically provide you with complete information. There are reports on Living Donors Online from donors who think they did not receive adequate information from the transplant center to give a truly informed consent.

Here’s a link to a new online publication called “What Every Patient Needs to Know”: http://www.unos.org/SharedContentDocuments/What_Every_Patient_Needs_to_Know.pdf You may need to copy this address and paste it into the address section on your Internet browser.

Information about Transplant Centers It’s important to find out how much experience the surgeon and the transplant center have had with liver lobe transplants, the staff-to-patient ratio(s), and whether there have been any donor disabilities or deaths. Information about transplant centers can be found at the UNOS Web site www.unos.org.You can also ask Living Donors Online members if anyone has had experience with a particular transplant center.

Medical Risks Living donor liver lobe surgery is inherently risky. While uncommon, some of the problems that can occur include bleeding, infection, stroke, donor liver failure, and death.

For detailed information about medical risks, here’s a link to the proposed “Living Liver Donor Initial Consent for Evaluation” form that the U.S. Dept. of Health and Human Services Advisory Committee on Organ Transplantation developed: http://www.organdonor.gov/acotapp1.html

Emotional Risks In addition to the normal tendency to be somewhat depressed after surgery, the donor can experience emotional turmoil and depression if the recipient becomes ill or dies.

Future Risks: Lack of Long-Term Follow-up Data There is little or no long-term follow-up data concerning liver lobe donors to inform a prospective donor about what might happen in the future as a result of donation.

Dealing with Opposition from Family/Friends If your family and/or friends oppose your being a donor, try to keep in mind that they are experiencing fear and anxiety and are worried about losing you. The transplant center’s social worker may be able to help you gain their support. Providing information to your family and friends about the surgery and recovery and including your family in as much of the evaluation process as possible can be helpful.

Remember that there is no right or wrong decision, and whatever you decide will be right for you.

Surgery Scheduling Logistics

One logistical aspect of scheduling a transplant surgery is that two adjoining operating rooms (or two operating rooms close together) need to be available at the same time. In addition, all of the medical staff needed to attend to both the donor and the recipient must be available.

Suggestions for Preparing for the Hospital Stay and Your Recovery at Home

• Meet with your attorney to make sure your legal affairs are in order.
• Pay your bills.
• Make arrangements for the care of your children.
• Get your hair cut/colored/done.
• Trim your fingernails and toenails.
• If things you’ll need are high up in your cabinets or closets, move them down to a level where you can reach them easily.
• Launder clothes.
• Move furniture that you’ve been planning to move (you won’t be able to lift anything heavy for several weeks after donating).
• Buy loose comfortable clothing, if needed, because you’ll be swollen and sore for a while. Examples: Loose t-shirt dresses, knit pants that have a stretchy elastic waist, sweat pants, overalls.
• Pack your bag for the hospital. Include a warm robe; hospitals can sometimes be very cold. If you do not have a warm robe, consider buying a beltless, calf-length, three-quarter sleeve robe. (beltless so you won’t have pressure on your incision, calf-length so you won’t trip, and three-quarter sleeves so you won’t get wet when you wash your hands or eat). Include warm slippers or slip-on sandals or shoes for the walking you’ll do after surgery.

At the Hospital

Have a Helper If possible, have a family member or friend with you around the clock for at least the first couple of days. This person can help with practical things like giving you ice chips and water, can watch out for any problems, and can advocate for any needs that you might have.

Pain Medications and Constipation Pain medication can cause constipation. If this happens to you, be sure to tell your doctor so it can be treated. Severe constipation can lead to painful intestinal blockages and can sometimes be dangerous.

Don’t Suffer Needlessly If you have pain, be sure to ask for something to alleviate it; don’t just tough it out. Having a lot of pain is stressful and will keep you from moving around and walking which are important to your recovery.

Try Your At-Home Pain Medication in the Hospital While you’re still in the hospital, it’s a good idea to try the pain medication you’ll be taking at home to be sure you don’t have a reaction to it and that it works.

Antibiotics, Diarrhea, and Yeast Infections Antibiotics typically eliminate “good” bacteria from the intestinal tract, and a donor can develop diarrhea as a result. Some women also contract vaginal yeast infections. If diarrhea and/or a yeast infection happen to you, don’t assume that it’s just a part of the process and will go away on its own. Mention it to your doctor immediately so it can be treated.

Live Flowers and Plants in Patient Rooms Find out in advance what the hospital’s policy is regarding live plants and flowers and let your friends and family know.

At Home

Have a Helper(s) It’s important to have someone help you at home for the first week or two. You won’t be able to lift anything more than 8-10 pounds for about six weeks, so if you have a baby or young children, you’ll need some help with them.

Understanding Post-Discharge Treatment and Insurance Coverage One thing I wished I had obtained was a written explanation from the transplant center or my recipient’s insurance company about coverage of post-discharge expenses in case of complications. I had a complication, and during the time I was treated for it I was uneasy that I might have to pay something myself. As it turned out, my recipient’s insurance covered everything, but having the information in advance would have put my mind at ease.

If you live far away from the transplant center, try to obtain a written explanation of how you should obtain follow-up medical care for any post-discharge donation-related problems and to whom the bills should be sent for insurance processing (under the recipient’s policy).

Post-Transplant Medical Follow-Up Many of the Living Donors Online posts indicate that frequent medical follow-up by transplant centers during the first year is not the norm. Personally, I think it would be more reassuring to donors if they were seen at least every three months during the first year after surgery.

If You Have Medical Problems If you have a medical problem(s) that you think is related to the donor surgery and you live close to the transplant center, insist that the center see you even if you get some “push back.” Assume that YOU are the one that will need to take the initiative and be assertive.

I’m not a medical professional, so I won’t discuss the kinds of medical problems that might cause you to seek help. There are posts on Living Donors Online that may help you identify whether you’re having an organ-donation-related problem. If your problem is causing you distress and the transplant center won’t see you, see your personal physician. Go to the emergency room if it seems life-threatening.

The Emotional Roller Coaster Doesn’t Stop at Surgery It’s not uncommon to have emotional ups and downs, or even depression, after surgery, and it takes a while for emotions to level out. I think some of the emotional fluctuations are caused by the drugs and anesthesia. There can also be a let-down when the focus shifts from the donor to the recipient.

Returning to Work

Each person heals at his or her own rate. It can take several weeks to months to return to work depending on the individual. On Living Donors Online, some people report that they returned to work after four to six weeks and others report longer periods of time.