A diagnosis of kidney failure may be a time filled with overwhelming angst. It is important to know that you have choices and to take the opportunity to explore your options. Many patients automatically assume that a kidney transplant is the best option, but this is not necessarily true for everyone. There are many factors to consider when exploring transplantation, such as medical, psychosocial and financial. Other patients feel dialysis, whether at home or in-center, hemo or peritoneal, is more suited to their lifestyle.
When considering your options, contemplate what will improve your quality of life. Quality of life may be defined as “The degree to which a person enjoys the important possibilities of his/her life. Possibilities result from the opportunities and limitations each person has in his/her life and reflect the interaction of personal and environmental factors” (Quality of Life Research Unit, University of Toronto). Will a transplant be compatible with your daily routine?
In order to meet criteria for a transplant, you have to meet the medical guidelines of the transplant center you are working with. The medical criteria will vary with each center. The conditions that prohibit transplantation include weight restrictions, untreated infection, recent illness, cardiac issues and less than one year life expectancy. The transplant center may not want to transplant a medically risky patient because the possibility of further harm to that patient outweighs the potential positive outcomes.
There are medical risks associated with a transplant. These include, but are not limited to, blood clots, infection, bleeding, bone thinning and high cholesterol. The possibility of rejection of the organ prevents some patients from considering transplantation. New health problems can develop due to medication side effects, such as diabetes and cancer.
Psychosocial aspects are also strongly considered whether a patient will be accepted as a transplant candidate. After the transplant, most centers will require follow up care for a period of time at their specific center. In addition, you may not be allowed to drive for approximately one month. It will be imperative that you have someone available to provide caregiving and transportation. The length of time that you will need assistance varies, depending on your own recovery time, along with any potential complications. Transportation needs may be demanding during the initial follow up visits after a transplant. If you only have one support person in place, you may not be approved for a transplant. Some centers require a second and third back up support in case the primary person is unavailable. The rationale is to ensure you are discharged from the hospital to a safe environment. Therefore, a good support system is essential after transplantation.
Patients that do not have a good support system may find it necessary to remain on dialysis. Some patients prefer dialysis because this may be their only form of socialization. The dialysis unit can become a family-like atmosphere, especially for those without family and friends close to home. More dialysis units offer flexible shifts, such as overnight and evening, to allow patients to work or care for dependents during the day.
Financial responsibilities after a transplant may be burdensome if resources are limited. When determining if the transplant option is for you, make sure you know what to expect financially. Consult with your Dialysis or Transplant Social Worker for guidance. Find out your responsibilities for enrolling in Medicare Part A, B and/or D. Patients that do not take Medicare Part B can suffer financial consequences, which might result in the inability to continue to afford medications. Your employer coverage may have expensive medication costs as well.
Contact your insurance company to inquire about your coverage. You may want to ask about medication co-pay costs along with medication annual limits. This will enable you to plan appropriately for your out of pocket expenses. Should you determine that you are unable to manage the expenses, you may consider remaining on dialysis. Without the ability to afford the transplant medications, doses may be skipped and the kidney will not survive.
If you are not returning to work after a transplant and your only disability is kidney disease, then a transplant may not be the best option for you. One year after a transplant, Social Security Disability ends and three years after a transplant Medicare coverage ends. If you are a patient under 65 years old and disabled only due to kidney disease, you should strongly consider finding employment with insurance benefits in order to manage the medication costs of transplantation. These medications are taken for life, which results in the need for continued insurance coverage and financial support. Without insurance coverage, the medications could cost more than $4,000 per month.
Another factor to consider when contemplating transplantation is the excessive amount of medications taken after a transplant. The medications may include three or four immunosuppressants, antibiotics, antivirals, diuretics, statins and anti-ulcer medications. Remembering to take the medications exactly as prescribed is also a big responsibility.
Another concern that is often overlooked is depression. There are many side effects associated with these required medications, which may include depression. In addition a patient’s expectation of a transplant may not be compatible with how they really feel. Medically they may expect to feel better than they were feeling on dialysis, but this is not always the case. Psychologically they may expect to feel grateful and happy about the transplant, but some feel depressed. If the transplant fails, the patient may become depressed over the loss of the transplanted kidney. Or the patient may not feel as good as they expected to feel with the transplant. Your feelings should always be discussed with your physician. Antidepressants or counseling could help to relieve some of these issues.
There are some patients that prefer dialysis to transplant. Louis Scalfani, a 73 year old hemodialysis patient from Florida, chose to remain on dialysis. He began dialysis in May 2010. Initially he considered a transplant, but did not want to proceed with all the necessary testing. He decided at his age he would prefer the kidney “go to someone younger,” because he could maintain his quality of life while on dialysis. Mr. Scalfani states, “Dialysis hasn’t held me down. I still do everything I did before.” He and his wife recently booked a dialysis cruise for February 2011.
Another patient who prefers dialysis to transplantation is 65 year old, Joseph Lilly, from Florida. Mr. Lilly has been on hemodialysis 18 years. He stated, “I have a remarkable immune system.” He did not want to compromise his immune system with immunosuppressant medication, which is a lifetime requirement for transplant recipients.
There are many patients who still prefer a transplant rather than a form of dialysis. Once the medical, psychosocial and financial aspects are considered, they feel their quality of life will improve without the constraints and restrictions of dialysis. There are many other side effects associated with dialysis as well, including muscle cramps, infection, anemia, fluid overload and high potassium levels. Transplantation might be more appealing than dialysis to some patients, but this is a definitely a personal choice.
As of September 22, 2010, there were 86,167 patients listed nationally for a kidney transplant. You may not want to wait years on the transplant list. If you are not a candidate for a transplant or decide not to pursue transplantation, all hope is not lost. You may choose another option for treatment which may be a better fit for your lifestyle. Take the time to research your options.
Consider listing the pros and cons, ask questions, avoid snap decisions, be realistic and consult with your family. Transplant is not a cure and it is not the right treatment choice for everyone. You have to make the right choices for you. Choose an option that will allow you to live your life to the fullest and remember, a transplant is not the only answer.
Laurie Shore, MSW, LCSW, NSW-C, has been a Renal Transplant Social Worker for the Tampa General Hospital Transplant Program (formerly known as LifeLink) for the past seven years. She is responsible for conducting evaluations with patients applying for a kidney transplant. She previously worked as a Dialysis Social Worker in Pinellas County. Ms. Shore is on the National Board of Directors for the American Association of Kidney Patients and has served on the Florida Kidney Disaster Coalition since its inception in 2005. In addition, she serves on the Patient Advisory Committee for FMQAI: ESRD Network 7 and facilitates a local educational kidney group in Tampa, FL. Ms. Shore has conducted renal and social work related educational presentations on a national, regional, state and local level.
This article originally appeared in the March 2011 issue of aakpRENALIFE.