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Caregiving

My Sister's Lungs, Part 3: A Primer on Lung Transplants

Editor’s Note: In the third part of a five-part series, thirdAGE contributor Nancy Wurtzel (at right in the above photo) shares the ordeal her sister Barbara (at left in the above photo) is undergoing as she waits for a match for a lung transplant. Barbara’s situation is complicated by the fact that her husband, Jim, has Alzheimer’s. Additionally, the sisters’ mother is suffering from dementia as well. Here is the story of a family on a frightening, grueling healthcare journey of the kind that will be all too familiar to millions of Americans. You can read the first installment here and the second installment here. For an article by Nancy on the transplant issue in general, click here.

By Nancy Wurtzel

A  friend recently invited me to attend an upcoming weekend conference.  I reminded her that my older sister, Barbara, is on the lung transplant list at the University of Minnesota, so traveling to a different state wasn’t an option.

“I’m Barbara’s primary caregiver, and her transplant is my top priority,” I explain.

“What’s the holdup?” asked my friend, sounding quizzical. “Can’t they just set a date and do the surgery?”

“If it were only that easy,” I replied.

My friend just doesn’t get it, but she’s not alone.  Over the past year, I’ve encountered many people who seem to view organ transplant as a routine procedure, a health blip that can be easily remedied.  When I try to explain the severity of my sister’s condition as well as the complexity of transplantation, I sense some people feel I’m exaggerating.

While this frustrates me, I realize most people have no first-hand experience with organ transplant, and what they do know about the subject might not be very accurate.  My friend’s knowledge could easily be based on a movie, a television show, a novel or headlines in the media, all of which might portray transplant as a run-of-the-mill occurrence.

Transplant reality is a different story.

While it’s true that organ transplant has become more common in recent years, it is still considered a major, risky surgery, and life after transplant is no cakewalk.

I know this because over the past 18 months, Barbara and I have become semi-experts on lung transplants, absorbing more information than we ever wanted to know.  We’ve learned a transplant is only considered as a last resort for those with end-stage lung disease.  Sadly, my sister falls into this category.

The good news is that modern medicine has come a long way since the first lung transplant took place at the University of Mississippi in 1963.  The male recipient survived only 18 days.

For the next few decades, transplant success for all organs was spotty at best. Then, in the 1970s and early 1980s several things happened. First, the heart/lung machine was invented, which supports the recipient’s body during the long surgical procedure.  Next, tissue typing between the donor and recipient became a standard procedure, and then immunosuppressant medications were introduced.  The latter breakthrough tricks the body into not rejecting the new, foreign organ.

Suddenly, transplant centers across the country were seeing significantly improved outcomes.

Between January 1888 and January 2016, there have been 655,662 transplants performed in the U.S., with lung transplants accounting for less than five percent.

This disparity is due to several factors.  The main reason is that live donor lung transplants are rare since two donors are needed to create one lung.  Consequently, almost all lung transplants are from cadaveric donors — a person who has been deemed brain dead but is being kept alive in order for their organs to be harvested.

However, lungs are extremely delicate organs.  They can often be damaged during resuscitation efforts to save the donor’s life.  While other organs are still viable, even modest damage can render the lungs unsuitable for transplant.

On average, a transplant center will accept only two out of 10 lungs offered.

If donor lungs do become available, the search quickly begins to locate the ideal recipient or recipients.  Many patients undergo a single lung transplant and have great success.  Due to a bacterial condition in both of her lungs, my sister will require a double transplant.

What matters most when physicians look to match donor lungs with a recipient?  The donor and the recipient must have the same or a compatible blood type.  My sister is type O, the most common blood type.  Tissue type needs to align and doctors also cross-match for antigens or proteins in the cells.

I was surprised to learn lung size is also a consideration, but it makes sense.  Donated lungs must be large enough oxygenate the body, but they must also be small enough to fit into the chest cavity.

Hospitals and doctors do not arbitrarily determine who qualifies as a transplant candidate.  There is established protocol and many factors must be met.  Being too sick or conversely not sick enough can keep you off the transplant list.  Age is a factor as well, with 70 usually the top age for bilateral lung surgery (both lungs) and a slightly higher age for single lung.

Conditions such as obesity, hepatitis B or C, cancer, osteoporosis, active smoking or other substance abuse can all nix a person’s chances of being added to the transplant list. Candidates also need a solid support team, and it must be in place prior to transplant.  We’ve learned it will take a small village to provide pre- and -post transplant care.

Barbara’s transplant journey began a year ago.  At the Mayo Clinic, she was evaluated for a possible transplant.

Over a two-week period, I pushed the wheelchair while she underwent a battery of tests, including blood draws, x-rays, cancer screenings, heart catheterization, numerous scans, mental health evaluations, as well as pulmonary and breathing tests.

The evaluation process is arduous.  Early on, we learned you have to want transplantation and you must work hard to make it happen.  Transplant centers want good outcomes, and they consider a candidate’s level of motivation along with his or her physical capabilities.

Barbara returned home from the Mayo Clinic exhausted and undecided.

Was transplantation right for her?  Should she trade her imperfect but known state of health for the complete unknown?  Was it worth the many risks?  It was an agonizing time, and Barbara decided transplant wasn’t the right decision.

However, Barbara’s health continued to deteriorate, and less than a year later, transplantation was once again on the table.  This time, Barbara went through evaluation at the University of Minnesota (U of M), which has an outstanding lung transplantation program that spans 30 years.  In 2015, the U of M performed 57 lung transplants, one of the highest numbers in the country, and I can attest its program excels in patient education, support and follow through.  As a bonus, the medical center is located just 20 minutes from Barbara’s home.

If a match is found, and if Barbara accepts, then the U of M will send a surgical team to retrieve the lungs.

Typically, surgery is about 8 hours for a single lung transplant and up to 12 hours for double/bilateral.

If all goes well, recipients are in the hospital a few weeks, but complications could mean that Barbara will be hospitalized for months.  When she is released to recuperate at home, she’ll require round-the-clock caregiving for a period of at least three months.  During recuperation, she will participate in pulmonary rehab as well as frequent tests, doctor appointments, therapy, and more.

For most lung recipients, the quality of life is improved after transplant. They have better exercise endurance and can do more on a daily basis. Almost all patients can live without the help of an oxygen tank.

We’ve seen almost miraculous changes in people at the lung transplant support group we attend every week.

However, we also know this is a serious, uncertain endeavor, and the statistics are sobering.

About four out of five patients are still alive one year following lung transplant. During this first year, the risk of death is mainly due to complications such as infection and/or rejection.  In fact, rejection will be a life-long battle. The body’s immune system detects the transplanted organ and sees it as an invader it has to attack.

To prevent rejection, organ transplant patients must take an array of powerful drugs several times a day.  These medications reduce the body’s natural ability to fight off infections and prevent rejection, but they can also produce serious side effects, such as diabetes, kidney damage, heart problems and various types of cancer.

Five years out from transplant, just over half of lung transplant recipients will still be living.

At the ten year mark, only about 33 percent of recipients will have survived.

If my sister’s lung transplant is not successful, the chance for a second organ transplant is very low.  Usually, patients are far too sick to qualify.

The physician’s and educators at the U of M have not sugarcoated the operation and recuperation.  We’re aware of the pitfalls.  There are some patients do not live through surgery or die shortly after.  Others never regain their strength or improve their quality of life.  For the rest of her life, my sister will need to live near a transplant center and she will have to constantly monitor her health.

This is not a Hollywood movie or a book of fiction.  This is real life and there are no guarantees.

Still, my sister wants the opportunity to live and she is willing to fight for it.  She’s hoping for another decade of life with improved health.

At a recent support group meeting, Barbara and I are introduced to a couple.  Initially, we assumed the wife needed a transplant as she was in a wheelchair.  Then, to our surprise, we learned the husband had been transplanted a dozen years ago.  He has done well and is now caring for his wife who has her own health challenges.

Eyes shining, my sister turned to me.  “Wouldn’t it be great if that was us, and I was pushing your wheelchair?” she said.

“Yes,” I replied with a chuckle. “That would be great.”