5 Year Kidneyversary

Yesterday I received an unexpected call from my brother in law.  

“Hey Linda, can you tell me a little bit about kidney donation?”

“Sure, that’s funny, tomorrow is the 5 year anniversary of my donation.”  

He wanted information about matching, recovery time, medication and how difficult it was on me and the recipient.  A man in need of a kidney, he was seeking facts for himself and his potential donors, his sister and nephew.  I thought oh, I can tell him to read my blog.  The only problem with that suggestion is I’ve never posted basic questions and answers about this life-giving surgery until now.

Q: Who is this person you donated to? Are you related?
A: She is my cousin’s wife.  We didn’t have to be related to match.

Q: How do they know if you’re a match?
A: There are 3 main blood tests; blood typing, tissue typing and cross-matching.  Tissue testing is done for antigens and cross matching mixes the recipient’s blood and cells from the donor to see if the recipient doesn’t have antibodies that want to kill the donor’s cells.  I’m O-positive, a universal donor, so my blood is compatible with all blood types.

Q: What other kinds of tests did you have to take?
A: Besides bloodwork, there was a 24 hour urine collection, chest x-ray, EKG, abdominal/pelvic x-ray and numerous psychological evaluations.  I was even part of a research study about a donor’s perceptions of risks and benefits.

Q: How long did all the testing take?
A: I don’t have all of the details written down on my calendar (like Brett Cavanaugh) but I heard about the need for a kidney at the end of February 2015.  I’m not sure how long I mulled around with idea, but by April 3, a Good Friday indeed, we got word that we matched.  In May, I flew to Philadelphia to go through most of the tests I mentioned and the surgery was on July 21st, 2015. 

Q: How many days were you in the hospital?
A: Surgery was early Tuesday morning and on Saturday I was checking into the Transplant House, Penn Medicine’s guest house, where I joined my boyfriend, my cousin and the recipient who got out a day earlier than me.  We lovingly called it, “the halfway house.”  I was there for 1 night before staying at my cousin’s house for about 10 days before I flew home.  My first and only time flying first class.

Q: How long were you out of work?
A: 1 month. Luckily, I had sick time to cover it and of course I took FMLA.

Q: Do you have to take any medicine?
A: Nope! But the recipient has to take anti-rejection medicine.

Q: Are you restricted from any food/alcohol/caffeine/medications?
A: The only thing I need to be careful of is non-steroidals (NSAIDS) Motrin, Advil etc.  Also, the transplant team does not recommend any herbal supplements due to the lack of safety data.  Otherwise, I am free to to eat, drink and be merry.

Q: Was it painful and how long before you returned to normal activities?
A: There are 2 types of surgeries: laparoscopic and open.  Most surgeries are laparoscopic, which involves a few incisions and a camera.  This method is less painful, the surgery time is 2-3 hours and people recover quicker.  However due to my renal anatomy (too many veins/arteries) I had to have an open more invasive nephrectomy (kidney removal).  The surgery lasted about 4 hours.  It was a bit more painful but all in all I recovered pretty quickly.  I went to a “concert in the park” 10 days after I came home and I started back with my lunchtime walks when I returned to work.  Running didn’t feel good for a long time because of the bouncing and the idea of a hula hoop still makes me say, “ouch.” 

Q: Who pays for the donor’s surgery?
A: All the costs including testing, evaluation and surgery are paid for by the recipient’s health insurance.  I received some help for travel expenses from “Living donor assistance” and there was a Gofundme page set up to offset the sick leave and other expenses.

Q: Why do we have 2 kidneys?
A: So we can share our spare!  A transplanted kidney can do 40-85% of the work of 2 working kidneys.  A kidney from a living donor starts to work right away.  Cadaver kidneys take longer to start working sometimes 2-4 weeks.  Kidneys from a living donor work better and last longer than one from a deceased donor.

I was happy to answer his questions and Maureen and I are open to answer any others you may have about giving the gift of life.  Please feel free to reach out anytime.

“Doctor My Eyes Have Seen The Years and The Slow Parade of Fears”

Friends ask if I thought about dying when I decided to give away one of my healthy kidneys.  Luckily I only thought about it a couple of times.  There’s a point when an idea starts coming to fruition that’s a bit scary.  Ideas are risky.  When my far-fetched idea started becoming a reality, I started to read about the surgery and risks.  When I clicked on the link for Penn Medicine for the first time from a Facebook post soliciting potential donors, I was comforted to read, “The Penn Transplant Institute has one of the largest and most experienced living donor transplants programs in the country.”  I read more about the hospital system,  “Our history of patient care began more than two centuries ago with the founding of the nation’s first hospital, Pennsylvania Hospital, in 1751 and the nation’s first medical school at the University of Pennsylvania in 1765. Penn Medicine has pioneered medical frontiers with a staff comprised of innovators who have dedicated their lives to advancing medicine through excellence in education, research and patient care.”  The first hospital was founded by Benjamin Franklin and Dr. Thomas Bond.  Now that’s rather comforting if you ask me.

The Kidney Transplant Institute is in Penn’s Perelman Center for Advanced Medicine in University City (Philadelphia).  It’s a beautiful sleek, state of the art building with floor to ceiling glass that was completed in 2008.  Visiting the Perelman building with its gourmet coffee bar, for tests and the pre-op appointment led me to believe that’s where the surgery would take place “a la The Bionic Woman.”  It hadn’t dawned on me until we pulled up very early in the morning the day of the operation, that the surgery was taking place across the street from the Perelman Center at The Hospital of the University of Pennsylvania, which was built in 1874.  The room they wheeled me in seemed rather old, “not run down old” just not Perelman Center new.  The room had bright lights that made the green paint seem uglier than it would have been under regular light.

When they rolled me over to my side to give me the epidural, I noticed a stain on a small, portable cabinet holding all kinds of shiny instruments.  I knew it was a blood stain of course and that was the second time I thought about death.  But as quickly as I freaked was as quickly as I told myself to push away any negative thoughts before I went under.  I didn’t want to go unconscious with bad thoughts floating around my head or surely I would die for being negative right when the real test was about to take place.  It wasn’t a matter of being brave, it was a matter of being positive and blessing everyone around me to do the best job they could and not to be upset about a little blood.  So I went to sleep remembering the rave reviews about this hospital system and thanking God for its history, wisdom and for teaching so many wonderful doctors like Ali Naji M.D, PhD, my surgeon, who is a rockstar.  When he told me my scar will be invisible, I didn’t quite believe him.  He compared himself to Beverly Hills plastic surgeons (he knew I lived in California). Dr. Naji is the Surgical Director of the Kidney and Pancreas Transplant Program.  His credits go on, just like another Philadelphia, rock star doctor, C. Everett Koop.

Dr. Koop got his “Doctor of Science degree in medicine from the University of Pennsylvania in 1947.”  “From 1946 to 1981, Koop was the surgeon-in-chief Children’s Hospital of Philadelphia (CHOP).”  I can’t believe Philadelphians send their kids to a place called CHOP.  How terrifying!  Koop became a professor of pediatric surgery in 1959 and professor of pediatrics in 1971 at the  University of Pennsylvania School of Medicine.  Maureen’s mom and dad ran into him in an elevator at CHOP.  Maureen had visited that hospital regularly since the age of five when she was diagnosed with type 1 diabetes.  Maureen’s mom, Nancy, got up the nerve to speak to Dr. Koop.  She was a self proclaimed nerd, who kept up with the medical field.  She asked him for a quick prognosis.  He told her Maureen’s life expectancy would be about 25 years old.  After all, insulin pumps hadn’t been invented at that time.  They were invented in 1976, when Maureen was 10 years old.  Because of the bravery of the founding fathers, whose risky ideas were worth seeing to fruition and the researchers, inventors and teachers, Maureen’s life has more than doubled the life expectancy age Dr. Koop estimated.  I hope with the help of my kidney and new technology like her new continuous glucose monitoring system, she can exceed Dr. Koop’s ripe old age of 97 years old!

I’m glad my surgery didn’t take place here, the first surgical amphitheater on the third floor at Pennsylvania Hospital.  It opened in 1804.  ‘Patients chose rum, laundanum or a tap on the head with a mallet to dull the pain.”