Kidney transplantation | Parenting In the Loop

Hi everyone,

I have been absent this week because I went back to work as a renal social worker…just for the week.

Covering vacations is always a challenge but it also gives me a chance to help out and work together with a great group of colleagues.

Dialysis patients are a very special group. One of their major needs is to have someone just listen to them. Listening is really an art and to be honest I enjoy it and I am good at it.

Someone, who has a chronic illness,I have learned, feels like they are carrying around a 50 pound suitcase all the time.

Kidney failure demands a lifestyle change… three times a week a person in kidney failure must sit in a chair connected to machine for 3 – 4 hours while their blood goes through a machine to be cleansed of all impurities that their kidneys used to remove without them even thinking about it.

Now, without dialysis they will die.

I am always amazed at how different people handle this type of a diagnosis. Initially, there is a period of disbelief that their kidneys have failed…there is also a period of accepting the fact that dialysis will be necessary for the rest of their lives or until they have a transplant.

This news is usually devastating for the End Stage Renal Disease (ESRD) patients and their families.

Kidney failure knows no age boundaries.

I have seen a young woman in acute renal failure due to taking massive doses of ibuprofen prior to her realizing she was pregnant. Her kidneys completely shut down …fortunately her kidney function slowly returned and she delivered a healthy baby.

We have children on dialysis too. For various reasons, kidney failure also affects babies and until they can receive a transplanted kidney they have to have dialysis treatments as well.

After this week…I am experiencing “compassion fatigue”.

When I returned to the dialysis center…some of the people with whom I had a relationship were dead…a few of them were old and their bodies weary from illness but a few were young, one was a mother of a teenager.

My heart ached for them and their families. The chairs where they sat have new dialysis patients sitting in them as the cycle of life goes on in the dialysis center.

On the upside…one of my patients, whose transplanted kidney failed, received a new kidney. He is a young dad, whose wife died a couple of years ago from complications of kidney failure.

I love my work…and am happy to help, but this Friday I am grateful to come home to my family and grandchild.

I look forward to this weekend and am thankful to get back to my regularly scheduled programming

Amelia’s Rivera’s story is a tragic one and one that is sadly not that uncommon.

The medically fragile and vulnerable are all at risk when it comes to who gets a transplant and who does not. There are guidelines and ethics involved in medical decisions and sometimes it does not seem fair when decisions like the recent one at CHOP are made based on mental disability.

On the surface, this decision seems unfair and the conversation with the parents seems cold and unprofessional.

From the distraught parents’ point of view the doctors, nurses and social workers were unfeeling and certainly not the professionals that that these parents had put their faith in, to save their daughter.

As a social worker and nurse I have had some serious heart rendering discussions with families. Experience has taught me to listen very carefully to patients and families…they want to be heard and understood. I try to support them to my best ability and I am their advocate while also working within the hospital’s policies and procedures and decision making. This is sometimes extremely difficult.

In this case…if Amelia’s parents want to continue to pursue a transplant for her…it would be my responsibility to encourage them to seek out another pediatric center that performs transplants…I would then explain to them that acceptance of a donor is not automatic and a pediatric donor is more complicated than an adult donor.

Amelia’s parents needed to experience empathy from the transplant team at CHOP…they needed to feel that their feelings were respected and understood and they need to be treated like the concerned and loving parents that they are.

The transplant team at CHOP should disclose how decisions like this are made…this is certainly not the first decision of this kind at a transplant center and it will not be the last. These types of decisions are not made lightly by checking a box on a sheet of paper…they are agonized over by the medical staff and guided by medical ethics.

The truth today is that some lives are considered more valuable than others…we see this with the abortion issue and life sustaining treatments for the fragile elderly to name only two vulnerable patient populations.

My heart goes out to Amelia’s parents and family…they are trying to save her life and to them her life is valuable…she is their precious child.

Unfortunately, transplant decisions are not made on feelings and love…they are made on facts and medical ethics…

The delivery of these decisions are not easy…in this case it seems that those involved did not empathically deliver bad news to these loving parents …they did not respect the fact that Amelia’s parents were hoping for a life sustaining procedure for their little girl…which was not going to happen at CHOP.

Amelia Rivera and medical morality – Guest Voices – The Washington Post.

Parenting in the Loop

Tag Archives: Kidney transplantation

Amelia Rivera …Transplant “Rejection”