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Eric’s Story: Transplant

Part 2 of a two-part series, from Lifeline Letter, May/June 2017

Eric James Thatcher

 

Click here to read part 1, Eric's Story: Growing Up with Crohn's.

 

Many people use their calendars to track social events, but living with Crohn’s disease for most of my life, my calendar has always been filled with doctor visits and medical testing dates. It seems almost every hour has been dedicated to changing my colostomy bag, taking shots, swallowing pills, or setting up to run my home parenteral nutrition (HPN), which is a project unto itself.

 

Appointments

 

My first appointment in 2015 was with my GI doctor. I was receiving HPN, so they were monitoring my
liver functions. The CAT scan showed a suspicious spot on my left kidney. Further testing, including a biopsy, revealed I had a cancerous tumor.            

 

After consulting with several specialists (all with different opinions on the best course of action), in June I had half of my left kidney removed at a hospital in nearby Massachusetts. The surgeon was confident all cancerous cells had been removed and I would not require chemotherapy. My parents and I were relieved.    

 

After surgery, though, I didn’t have the energy to get myself out of bed, even to use the bathroom. I voided into a urinal and my dad rigged up a system for me to empty my colostomy bag without having to get up. I was tired of being sick and bedridden. My condition was taking a toll on me, and on my parents as well. We had hoped for a favorable outcome following this surgery. 

 

My dad decided there must be a medical approach that could improve my quality of life. He searched the internet for information on Crohn’s disease. Many months earlier we had received a newsletter from the Oley Foundation. One of the articles in it mentioned a medical center that, it said, was one of only a few in the country performing intestinal transplants.

 

My dad found an email address for the clinical coordinator of that transplant center and sent her a copy of my story, along with a desperate plea for someone to contact him. Within hours they responded, saying they were confident they could help me. 

 

The Transplant Center

 

Before our first appointment with the transplant team, which was scheduled for July, I had to obtain medical records from my primary care provider (PCP), GI doctor, the medical team overseeing my HPN, and the surgeon who had operated on my kidney. The transplant team would use these to evaluate my condition and make sure I was cancer-free. The day of my appointment, my dad and mom awoke early and made a pot of strong coffee. I swung into my morning routines, then filled a backpack with medical supplies, beverages, books, and snacks for the long train ride ahead. I was somewhat apprehensive, as the center held the key to turning my life around and restoring hope. 

 

We boarded our train early and by about 10:30 were at the center. We were greeted by the scheduling coordinator and escorted into a room, where my height (5’11”), weight (116 lbs.), and blood pressure were recorded. Then two nurse practitioners assigned to the transplant team joined us. The surgeon was scheduled to meet with us, too, but he couldn’t due to an emergency. 

 

I gave them the lengthy patient survey I had completed; had a chest x-ray taken and series of TB shots. They gave us a thick packet of information that explained the transplant process, including the screening process, waiting list, surgical procedure, anti-rejection drug regimen, mortality rate, and so on. 

 

The nurse practitioners told us that a transplant of this nature is life-altering for the patient, and also for the patient’s family. First is the twelve-hour surgery, then the uncertainty over whether the organs would be rejected. There is approximately a 20 percent mortality rate—meaning one out of every five patients undergoing a small bowel transplant could die within the first year. 

 

My heart skipped a beat when they discussed the donor process. Reality strikes home when you think how an individual or family has made a courageous and unselfish decision to help save the life of a total stranger. 

 

All candidates must go through extensive pre-testing and psychological profiling, and all of their medical records must be reviewed (twenty plus years’ worth, in my case) by a committee of medical experts. 

 

Financial stability is critical, too, as many of the costs associated with the procedure are not covered by health insurance, such as housing near the center for one of my parents during my eight- to ten-week recovery period, transportation for follow-up visits, and possibly out-of-pocket expenses for anti-rejection drugs. During the first year following surgery, we were told the costs for medications could be as high as $40,000. 

 

Our visit lasted several hours, and I went home with a list of things I needed to accomplish before my next visit, when the surgeon would go over the details. I felt fear, excitement, and doubt about whether I would be viewed as a candidate. By the time we arrived home, it had been a seventeen-hour day. We were physically and emotionally exhausted.

 

Next Steps Toward Transplant

Four weeks later, we made our second trip to the center. This trip was less harried, though in the end, it was still a fourteen-hour day. 

 

The surgeon who would perform the transplant was upbeat, professional, and passionate about his work. He said at my current weight, I would be considered severely malnourished, and although I had already had an infection linked to being on HPN, I needed to go back on HPN so I’d be strong enough to survive the surgery and the critical year post-transplant. 

 

The surgeon had spoken with the medical team who oversaw my HPN and they had told him they were concerned about episodes of non-compliance on my part. A demonstrated history of patient compliance was critical to being accepted into the transplant program. The surgeon explained it was a matter of life and death, especially during the first year. I realized they also wanted to make sure I was worthy of organs that otherwise would have gone to someone else. 

 

This was a defining moment for me. I knew I felt healthy fewer and fewer days, and eventually I would die from complications related to Crohn’s. I looked at everyone in the room and said I would do whatever I needed to do, including going back on HPN.  

 

The following week, after a short but contentious meeting, the surgeon who oversaw my HPN at my local hospital agreed to put me back on HPN five days a week, twelve hours per day. At a visit two weeks later, he seemed satisfied I was being compliant, based on my weight gain and the weekly reports from my visiting nurse.

 

Several weeks later my parents and I traveled back to the transplant center. The nurses weighed me and made sure they had all the medical records necessary for the doctors and board to review. My weight was up to around 140 lbs. I felt we were heading in the right direction, although I still felt tired and found it hard to get myself out of bed. 

 

During this visit, discussion focused on my teeth. They had been deteriorating, due largely to my disease, dry mouth, and medications I had been on since childhood, and I had already had twelve teeth removed. Now all but four of my adult teeth would have to be pulled prior to transplant surgery. My suppressed immune system and the anti-rejection drugs I would be taking would leave me susceptible to severe infection or death. The thought of having my teeth pulled and wearing dentures was a big deal to me, and the extractions and dentures would be expensive.

 

Support

With my permission, the transplant team gave my phone number to a woman about my age who had undergone intestinal transplant about a year earlier. She had had digestive health issues from birth. She texted me, and said she was doing exceptionally well. 

 

She and I have continued to communicate, which has been very helpful for me. It gave me insight on what to expect, and it is nice to talk to someone who knows exactly what it is (or was) like living with an acute illness.

 

Back to the Center

In December, we returned to the transplant center for the fourth time. Our day began at 3:30 a.m. I had butterflies in my stomach and my normally stoic parents were nervous. At this visit we expected to hear whether I had been accepted as a transplant candidate. 

 

In the examining room, the nurse practitioner greeted us with a smile. My dad, filled with anticipation and knowing I’d been gaining weight, asked if I had been accepted. Without total commitment, she said things were looking good and confirmed that they’d received copies of all the required slides, scans, and records. 

 

Moments later the doctor entered. Upbeat, he said he was happy with my weight gain and apparent compliance with the HPN program. He reiterated that I needed to be 110 percent compliant if I wanted to survive the surgery. Then he became serious. He wanted to be sure we understood death was a real possibility, though they were working hard to improve the odds of survival. 

 

He then stated that the criteria for transplant surgery have nothing to do with an individual’s quality of life. The criteria are established by the government, i.e. Medicare, and passed down to the medical facilities that perform the transplants. Based on the current guidelines, I would literally have to be having complications of HPN in order to be placed on the organ transplant waiting list.

 

My mouth dropped and heart sank. I challenged the doctor, stating that following these guidelines, the patient would be too weak to survive the surgery and that as I understood it, by gaining weight and getting stronger I would be a better candidate. He replied that he had no doubt I would be back soon to have a transplant. It was likely that I would experience problems with HPN, as I had the previous year, and if they discontinued the HPN, my weight would plummet and I would become dehydrated and hospitalized—that would be the appropriate point for transplant, but as long as I was seemingly doing well on HPN, there was no “indication for transplant.” 

 

My parents were visibly upset. My mom asked, “What parent would want to set their child up for failure and watch them deteriorate to the point of death?” The room went silent.  The train ride home was long and emotional. There was little to no quality of life for me, just days where there was less suffering and pain. The surgeon’s explanation seemed to defy logic, that poor quality of life, while understandable, in of itself was not sufficient reason to proceed with transplant. 

 

Driven by the love of my family and my love for God, I try to be optimistic, but I can’t say I never get angry. Most of my friends have careers and are ready to settle down. Many have homes and children. I, too, have dreams and wish I could find someone to call my soul mate. However, I would not want to burden another person with the health issues associated with my Crohn’s.

Tough Times in the New Year

2016 started off quietly, but as the saying goes, it was the calm before the storm. On January 14, I met with the surgeon who had performed the kidney surgery. He said things looked good. 

 

The following day, my mom and I went to a community health clinic, where they said they would take out two teeth at a time. That meant it would be seven months before I would be ready for transplant surgery. Another oral surgeon would pull all fourteen teeth at once, but that option was more expensive. 

 

The next week, I met with my GI doctor. I was having trouble swallowing, and he was concerned about a possible blockage in my esophagus. He was also concerned that something was amiss with my liver or gallbladder because my liver counts were high.  


My first swallow test came back as inconclusive. They scheduled another. Then I had a consult with a specialist, who noted that stones had possibly developed in my gallbladder and my bile ducts might be blocked. On his recommendation, an endoscopic retrograde cholangiopancreatography (ERCP) was performed in February. They cleaned out the bile ducts and removed six large stones from my gallbladder, which we hoped would help lessen the constant nausea and tiredness I had been feeling.  

 

In early March, however, my parents and I got the flu, which left me severely dehydrated and even weaker. We rescheduled our appointment with the transplant center for March 30. On March 23, I had an appointment with the physician in Rhode Island who, along with his staff, was overseeing my HPN and nutritional needs. He commented that my white blood cell count was slightly elevated. 

 

Still weak, I again rescheduled my appointment with the transplant center. A few days later, I suddenly began to vomit. After a couple of days of vomiting I was admitted to the hospital, where they discovered my gallbladder was inflamed. 

 

They thought they could save the gallbladder by placing a tube into it to allow fluids to drain. In the end, however, that surgery was just the first in a series of surgeries and complications that ended with the removal of my gallbladder. After twenty-eight days in the hospital and serious weight loss, I was finally discharged.

Silver Linings

Not long after, the area around the incision from the removal of my gallbladder looked red and was painful to the touch. My doctor’s office told me to return to the ER, where they did a direct admit. It was a good call, as I had a nasty infection at the site. I was placed on IV antibiotics and remained in the hospital for five days.

 

They say good things can come from bad events, which I believe. During my hospital stay, I was visited regularly by the members of my nutrition team, who, along with my visiting nurse, have basically kept me alive over the past several years via HPN and IV lipids.

 

A doctor on this team asked for permission to bring the transplant center team up to date on my latest surgeries and deteriorating health. I agreed. This doctor is a compassionate caregiver who knows firsthand the physical and mental pain Crohn’s and colitis can inflict on patients and family members. She began communicating with the transplant team immediately.

 

Within two weeks of my discharge, I received a call from the transplant team. The nurse practitioner informed me unofficially that after almost a year of traveling back and forth to the center, of spending long hours on the phone fighting with medical care providers, and experiencing sleepless nights, I would be accepted as a transplant candidate. 

 

I was light-headed. I hung up and informed my parents, who looked at each other tearfully and unable to speak.

Confirmation

On June 29, all but four of my teeth were pulled. When my gums healed, these teeth would help anchor my dentures. My family was amazed when several hours later I was goofing around. Humor is the best medicine, especially when you can make others laugh. 

 

On July 6, our train left at 5:40 a.m., heading toward the transplant center. I was nervous. At the center, they took my weight and blood pressure and verified my list of medications, which read like a grocery list (lol). When the surgeon came in, we went over my health history from the past year. He stated that I was HPN dependent, and with my liver tests already being abnormal, in the long run it would negatively impact my liver. We did not want to chance my losing another vital organ, he continued, and within a week my name would be placed in the national database for matching organ donors.

 

The surgeon ordered blood work to ensure I did not have certain antibodies present that would increase the risk of rejection of the transplanted organs; a CT scan of my chest and lower stomach; a meeting with the staff cardiologist; and another TB shot and a hepatitis vaccine. 

 

We were told to have our phones with us at all times. Once a matching donor was located, we would have six hours to respond to the hospital for the surgery. If we were unable to do so, the organs would go to another recipient. We could conceivably be reached in as soon as eight weeks. The surgeon stated that the odds for survival of this procedure were around 75 to 80 percent and that they were improving each year.

 

The Call 

We received the transplant call on Friday, October 21, 2016, at 8:07 p.m. We had been told we could expect a call very soon, but it was stressful nonetheless when the phone rang and we saw where the call was originating. My mom and dad huddled around me as I spoke to the woman from the transplant center. She said they had a matching donor and asked if I agreed to accept this offer. Without hesitation I said yes. 

 

We had prepared our overnight bags several weeks prior, and only had to add a few last-minute items. It was thundering and pouring rain during the entire three-hour drive to the transplant center. My dad is a retired police officer and used to driving in adverse conditions, but this trip was different. 

 

My parents and I arrived at the center at midnight and were directed to the surgical prep floor where we waited until about 9:30 a.m. One of the surgeons on my transplant team had flown out to inspect and procure the donor organs in a technically demanding operation, and accompany them on the trip back to the transplant center, where my surgeon would have already started on my operation.

 

My parents accompanied me to the surgical floor as they began preparations. We were all sleep deprived and running on adrenalin. My parents were whisked away to the family waiting area for what seemed like eternity, as my surgery lasted approximately nine hours. 

 

The first twenty-four hours after surgery were difficult. Being under anesthesia for that length of time plays havoc with your memory and thought processes. It’s hard to explain, though while on the intensive care unit I witnessed other transplant patients who had a similar experience. However, on the third day I was up and walking, at the amazement of my surgeons and nursing staff. On day five I was allowed to slowly begin soft food intake, which earned me the nickname of “Rock Star” as my progress exceeded the expectations of my medical team and support staff. 

 

For the first several days, my parents stayed at a family living center that the transplant center subsidizes, several blocks from the hospital. They went home, then returned several days later and remained through the weekend. They repeated this pattern over the next month.    

 

I progressed very rapidly over the next several weeks, partly due to my positive attitude and the skill of my surgeons and care team. The care I received was exceptional and everyone at the center was caring and considerate. To everyone’s amazement, I was discharged from the main hospital in thirty days. Normally, patients receiving a small bowel/ large intestine transplant spend forty-five to sixty days hospitalized. 

 

I stayed at the family living center for eight days, due to frequency of doctor visits, etc., and in case of an unexpected emergency. My dad stayed with me, and we passed the time walking (yes, walking) three blocks to the hospital each day, or in a park people watching and feeding the pigeons. 

 

My official discharge was November 22. I had asked if I could spend Thanksgiving with my family back home, and given my progress and tugging on a few heart strings, my wish was granted. The ride home seemed much shorter than that ride we had taken October 21. 

 

My PICC line was pulled on the day of my discharge. I am no longer required to take HPN (yeah!). I do take daily doses of anti-rejection drugs. These affect my kidneys, which were already weakened after twenty-three years of living with Crohn’s disease. This, however, is but another hurdle I am determined to overcome. 

 

In the six months since my transplant surgery, life has changed for me and my entire family. Not a day goes by that we don’t think of the young man whose life tragically ended, and of his family who at a time of tremendous suffering and loss had the compassion and strength to donate his organs, which saved the lives of many, including me. There is little question in my mind that the healthy condition of the small bowel and partial large intestine I received resulted in my recovery and a discharge of only thirty days. 

 

There have been many coincidences regarding the health care professionals in my life. I feel a divine power has brought these special people together not only to save my life, but to make a difference in the lives of the countless others who live with Crohn’s and colitis.

 

Updated 6/16/17

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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