In the Eyes of Mika

Hi,

So as everyone by now knows I need a kidney transplant. Yes, I have friends working very hard to try to get me a pool of donors for the transplant. Nevertheless, I would like to share some information from  the University of Iowa Organ Transplant Center.

First I must point out that, organ donation to another person must be done on your own free will; that means no one can force you into this decision. Second, the donation must be given altruistically; this means that there is no illegal financial gain by anyone. Third, the Transplant Center must always maintain the best health interests of the donor. If there happens to be a clear – cut reason for the donor not to donate, the Transplant Center may deny the donor that option, even though the donor may still wish to donate.

There is no director medical benefit to donating a kidney. Although, the benefit that you will receive as a living kidney donor is the opportunity to give another person the possibility of better health compared to if they received a kidney from the list of cadaver donors. Living donor organ transplants usually increase the chance of a successful transplant. Successful transplants result in improved rates of functioning kidneys at one year, and especially in the long term, at five, ten, or more years. Additionally, there is often a longer waiting time for deceased donor transplant in which time the recipient can become more ill. (By the way I am going on my third year of waiting for a kidney transplant. My specialist on Cystinosis at the National Institutes of Health (NIH) in Bethesda, Maryland wanted me to get a transplant almost two years ago.)

It is a rare possibility that you could develop kidney failure in the future, either as a result of the donation or more  likely, due to unrelated causes. Another, less obvious benefit of donation, is the discovery of an undetected illness that might benefit from treatment.

There are some risks to living kidney donation. The kidney removal for donation is usually done by using surgical instruments and a small incision (laparoscopy). There are some short-term risks of surgery for donation include, but are not limited to: death, bleeding, need for blood transfusion, wound infection, pain, bowl symptoms, and development of a blood clot in the legs after surgery. The risk of operative death from this kind of surgery is about 1 in 10,000, the same risk for any elective general surgery procedure. Donors can expect to experience a mild to moderate degree of pain for several weeks. Rarely, patients experience pain for up to two to three months. Occasionally, patients have some discomfort for up to six months, but pain beyond six months is rare.

Before donating, you must be evaluated to determine if it is medically appropriate for you to donate a kidney. You must be 18 or older. You must have a number of blood tests. This includes screening for HIV (the virus that causes AIDS), Hepatitis B (which I am immune to, so I can receive Hep B positive kidneys), and Hepatitis C (viruses that can cause liver disease). It is a possibility that an unexpected finding during the evaluation might affect your ability to get health, life or disability insurance in the future.

Some of the long term risks of living kidney donation include the possibility of a greater risk of developing high blood pressure as you get older. This is particularly true in African-American donors. Kidney donors may also have higher chance of increased protein in the urine. Everyone loses a small amount of kidney function as they get older, even with two normal kidneys. The rate of loss of kidney function after removal of one kidney is the same as before surgery. With no kidney disease, one kidney should be adequate for the normal human life span. At present, no studies have shown any abnormal loss of kidney function in kidney donors, even up to 15-20 years after surgery. Having only one kidney puts a person at a disadvantage in cases of kidney cancer or injury that results in the need for removal of that kidney. These are rare problems, but you should tell us if you think they may cause specific trouble for you. Kidney stones can also be more difficult to treat.

You cannot have diabetes if you wish to donate. There are no tests that can predict with certainty if you will get diabetes as you get older. Diabetes is particularly of concern if you have a family history of diabetes. Your risk of diabetes later in life will be influenced by your diet, weight, and level of exercise. If you have a higher likelihood of developing diabetes, and your laboratory tests indicate some level of concern, you might not be able to donate.

The process to donating a kidney starts with a simple health status questionnaire and a blood sample to determine your blood type and compatibility. If it is determined that you are a potential donor, you will be invited to Iowa City to complete your evaluation. The evaluation includes interviews and examinations with physicians, a clinical psychologist or social worker, and a donor advocate. There will be other blood tests, and routine medical screening tests such as an EKG and chest x-ray, and a CAT scan of your kidneys. We expect your routine general health maintenance tests (e.g. mammogram, Pap test, colonoscopy, etc.) to be up to date.

In order to complete the evaluation, the transplant team will check your ’tissue type’ or ‘HLA type’ which is the complement of proteins that your cells have that are recognized by your immune system as your own and by your kidney recipient’s immune system as foreign. Since these proteins have a strong influence on the success of the transplanted kidney, it is important for the team to identify your HLA type. This is done via a blood test and involves genetic testing and by Iowa law requires your informed consent.

Once all the testing has been completed, the transplant team and your donor advocate will meet to determine whether or not it is in your best interest to proceed with donation. The transplant coordinator will let you know the result of the meeting.

You may decline to donate at any time before, during or after the evaluation for any reason. If you chose no to donate, the reason for your decision can only be disclosed if you allow it. On occasion if you chose to donate, portions of your medical information may need to be shared with the recipient so that they can consider the risks and benefits of accepting a kidney from you.

After the donation surgery and after being discharged from the hospital, you will be asked to return to the University of Iowa Hospitals and Clinics for a post-op visit with your surgeon. This is usually scheduled 1-2 weeks after discharge. The primary reason is to ensure that your wound is healing well and that you do not have any other problems. Ideally, the transplant team would like to see you at 6 months, 1 year, and 2 years. You will receive a letter with the team’s recommended follow up at the 6 months, 1 year, and 2 year intervals. The team can work with your primary care physician to accomplish this if travel to Iowa City is too difficult.

All medical costs of your evaluation as a potential kidney donor, and the cost of the actual surgery, will be covered by the recipient’s insurance. There will be no charge to you or your insurance carrier for these medical expenses. However, sometimes during your evaluation, the team may find conditions that may require further tests and treatments for your own benefit. Whether you become a kidney donor or not, paying for these tests and deciding where they should be done, will be a choice made by you and your insurance company.

The cost of your first follow-up visit after surgery will also be covered by the recipient’s insurance company and/or Medicare. In addition, any problem occurring during the first 6 months after surgery, which the UIHC transplant physicians believe is related to the donation, will be covered.

After 6 months post donation, the Transplant Program will no longer assume responsibility for the costs of care related to complications of donor surgery or the recommended follow-up care described above.

So there is much of the information that is most important to the donation process. If anyone is interested in donating please send me an email at mika.covington@yahoo.com.

*All information provided above was provided by the University of Iowa Organ Transplant Center.

Tags: cadaver donors, Cystinosis, health, iowa medical center, kidney transplant, living kidney donor, National Institutes of Health, organ transplant center