Ask the Doctor
Questions about kidney disease? Risk factors? Signs and symptoms? Are you concerned about yourself, a friend or family member? Ask Dr. Spry.
When I was asked to write about transplant social work and how it has changed over the years, it took me back to 1981. That is when I took a job as the liver transplant social worker at Pittsburgh Children’s Hospital. At the time, Pittsburgh was the only place in the world performing liver transplants, with the exception of a few transplants being done in England. This meant I was the lone liver transplant social worker. I was 23 and had no idea what the job was going to entail but here I am 30 years later doing the same job, just a different location. I am even still with some of the original staff I worked with back then!
So what I learned quickly is that my job changed daily and sometimes hourly. The needs of the families varied, from the need for housing (many had to come to Pittsburgh to live to be close when a liver was found) to travel arrangements (which was a private jet in most cases). I got to know th3 →e oil companies in Texas with private jets and the air lingo like ETA. Schooling for siblings of our patient had to be arranged when they moved. Mothers were coming pregnant and needing a hospital to deliver. Know a foreign language? It certainly would have helped since we had families from all over the world. We did not have language lines like we do today.
Never in my wildest dreams did I think I was going to become an expert on fund raising but it was a must when insurance companies were not covering the transplant. Then there were the battles with the insurance companies to view liver transplant as non-experimental so that they would cover the transplant. I soon found that if you put a child’s face on the front page of the local newspaper you could get the attention of the insurance company very quickly. We had families that sold everything they had to come to Pittsburgh and would literally show up in the admissions office saying their child needed a transplant. They would present every penny they had only to find out that they were $90,000 short.
There was no such thing as a transplant coordinator for the first few years and the transplant team per se consisted of 3 pediatricians, a psychologist, a public relations person and me.
It was my job to make the initial contact to the family to inform them of the plan for their arrival for evaluations and assist with any arrangements they may need. Families were very surprised when they arrived and found that we were a very old hospital that did not have the look of a place where this world renowned surgery would take place. Once they got over that the next comment would be that they were surprised to find someone my age in this position. Well, there have been two new Pittsburgh Children’s hospitals built since that time and I now can say I am seasoned and much older!
Housing was a huge problem and the Ronald McDonald House which was several miles away could not accommodate all of our families. The community got involved, creating an organization that opened their homes to the families. I also had to get involved since these were our families that we were sending into community homes. Since this time, there have been several transplant housing facilities built.
There was no such organization as UNOS for liver allocation so I would find myself each week in a room filled with our team and the surgeons deciding who needed to be transplanted next. These children were not just names to me anymore. I had met them and their families and it just didn’t seem fair that we didn’t have a system to assist with this very difficult process. It seemed that if the child was in the Pittsburgh area or that the parents had recently corresponded, their child got the transplant next. I felt compelled to call all families to tell them to send pictures and write weekly to the surgeon so that he wouldn’t forget their child. This selection process also caused turmoil between parents as I came to know the parents of the children waiting for a transplant. They found themselves isolating themselves so that they could stay on task of getting their child transplanted. Much of the counseling that I did resolved around this issue.
Since liver transplant had never been an option for liver disease, we were seeing children who were extremely sick and many did not survive until an organ was found. There of course were deaths post-transplant as well. Dealing with death and dying was what I thought of an oncology social worker, not so much the transplant social worker. Today, due to the increase of organ donors and living donation and a better understanding of liver disease, I find myself dealing much less with death and dying and more with non-adherence.
Other overall changes I see are:
As a social worker, these changes have greatly changed how I do my job. I am now part of a multidisciplinary team that treats the patient and family as a whole, which I believe delivers much better care to the patient. I have the support of transplant social work colleagues and professional organizations throughout the country that provide me with updated resources and information.
My position is now overseen by a part of the government (CMS) whose guidelines I and the transplant team must abide by. This is a safety factor for the patient. Fax machines, cell phones and electronic charts have immensely changed how I do my work. None of these existed back then but has now saved an enormous amount of time at my job. I am now able to spend much more time counseling patients and families with all the added resources now available.