THIS PAGE IS CONSTANTLY BEING UPDATED. The citations on this list were last updated by Melody Annie Chang Jan-March 2018. Please let us know if you have a complication you would like us to add or if you know of a more recent medical journal article than the ones cited here. Please send suggestions to info@alodf.org.
Introduction
This project began because donors were asking Sigrid for an easily understandable list of possible complications. In response, Sigrid started a list which the ALODF team then supplemented with information found in medical journals. The list below is not based on any formal study and it is possible that some of the complications actually are just general surgery complications and specific to organ donation.
It is also worth noting that most donors Sigrid has met say they had no complications, and even among those who did have complications, she’s only met six who say they regret their decision to donate. Of those who regret their decision, all but two would have gone through with the donation anyway to save someone they cared about. This is a subtle but important distinction, and it is why the ALODF focuses its attention on helping donors who have already decided to donate or who have donated. One problem, from the ALODF’s perspective, is that people who have negative outcomes tend to be more hesitant to share their stories than people who are happy with the result. This undoubtedly effects the types of stories that end up on our website and support group. Sigrid personally thanks all living organ donors who shared their stories and all the interns who over the years have helped find medical articles relevant to each potential complication.
Most of these complications pass within months if not days, but a couple people report having complications that have lasted longer. The fact that it is so hard to find a comprehensive and easy to understand list of living organ donor complications shows that much work needs to be done to improve living organ donor informed consent. It also shows that much more thorough and long-term studies of potential complications for living organ donors need to be done.
List of potential complications (they are not in any particular order)
The complications listed here pertain mostly to kidney donation, but those complications that also (or specifically) pertain to liver donation are marked with a green asterisk (*). Most recent medical articles follow entry. Red for kidney. Green for liver.
*Remaining kidney will not make up all lost function — On average donors have a permanent 25-35% loss in overall kidney function. Some donors suffer from kidney disease, which may or may not be treatable depending on the cause. See articles (1) (2).
**Risk of developing kidney disease — Estimated fifteen-year risk projections for developing end-stage renal disease (ESRD) in kidney donors range from 0.15% to 0.96%, based on varying demographics. Projected risk for kidney donors is 3 to 5 times as high as projected risk for non-donors. For liver donors ten years post-operation, the cumulative incidence of all stages of chronic kidney disease (CKD) is 90.39%. See articles (1) (2) (3).
*Complications in post-donation pregnancies — Approximately 5.5% risk of gestational hypertension and/or preeclampsia post living kidney donation. Also some data but no percentage risk for lower likelihood of full-term deliveries, higher likelihood of fetal loss, higher associations with gestational diabetes, and higher risk of proteinuria for kidney donors. For liver donors there has not been enough research to make any conclusions. See articles (1) (2) (3).
*Bruised, cracked, broken, or removed rib — For kidney donors who removed ribs during procedure, there are differences with the 11th rib resection compared to the 12th rib resection in recovery. 11th rib resection resulted in shorter operation time but prolonged pain and around 19% incidence of incisional hernia. Not enough research has been done for bruised, cracked or broken ribs during liver and kidney removal procedures to provide conclusions. See article (1).
**Depression — Approximately 22% of liver donors self-reported depression symptoms as a result of the donation. For kidney donors, around 11.5% reported depression five years after the procedure. Usually the depression is short term and can be treated with counseling. See articles (1) (2).
**Urinary Track Infection — Approximately 10% of kidney donors have a minor UTI complication. Approximately 3.09% of liver donors have a UTI. A UTI is considered a minor complication and can be treated with antibiotics. See article (1) (2).
**Loss of appetite — Common in surgical procedures for both liver and kidney donors. See article (1).
*Mild Hypertension– Around 7% of kidney donors had mild hypertension issues which are treatable with a single dose of antihypertensive medication. No severe hypertension occurred. See article (1).
**Pneumonia — After kidney donations, approximately 2.5% of donors have pneumonia. Pnemonia rates for liver transplant are around 10% for donors. Pneumonia needs to be treated with antibiotics to prevent worse complications. See articles (1) (2).
*Biliary Complications — Approximately 9% of liver donors have this complication, including both biliary leaks and strictures. There is not enough research done on biliary complications in kidney donors. See article (1).
**Infection— At the incision site, 36% of kidney donors have infections that are treatable with antibiotics. Approximately 7% of liver donors also have infections. See articles (1) (2).
*Sense of abandonment by society due to difference in attention pre-surgery vs. post-surgery — There is no evidence suggesting a higher risk of adverse psychological health outcomes of kidney donors compared to nondonor populations. It can be helped by donor support groups and/or counseling. See article (1).
**Fatigue — 8 to 12 years after donating a kidney, 63% self-reported fatigue using a method called Multidimensional Fatigue Inventory. For liver donors, fatigue is one of the most common complaints 6 to 12 months after donation. See articles (1) (2).
*Bowel Obstruction — This complication requires re-operation but occurs in less than 0.005% of donors according to a study of 12,010 participants. Not enough research has been done to conclude statistics for liver donors. See article (1).
**Repair Surgeries — 0.5% of kidney donors are readmitted for re-operations. According to a study of liver donors, 0% had to be admitted for re-operation. See articles (1) (2).
**Restlessness, Anxiety — Around 6-14% of kidney donors experienced anxiety after an average of four years post-procedure. For liver donors, there is a significant prediction in the anxiety with a p-value of .06 . See articles (1) (2).
*Phantom Kidney Pain — When no clear indication of a cause for pain emerges, the role of a physician is to be compassionate and understanding. Phantom pain can also be treated through counseling. See article (1).
**Nerve Damage — Complication occurs in less than 1% of liver donors. See article (1).
*Post-Traumatic Stress Disorder- A synthesis of 52 separate studies suggests there is no evidence for a higher risk of psychosocial health outcomes for kidney donors compared to nondoner populations See article (1).
*Reduction in income due to fatigue or lost opportunity- Based on the Satisfaction with Life Scale, kidney donors with lower income or low savings are prone to facing financial difficulties after the procedure. About 16% of donors score low on the SWL. See article (1).
**Guilt if recipient is not doing well — Though not a lot of research has been done statistically on guilt, donors often go through a renegotiation of identity which can result in feelings of both guilt and depression. See article (1).
*Constipation — Occurs in around 1% of kidney donors based on one study. See article (1).
*Sense of loss or bereavement — Based on a Satisfaction with Life Survey (SWLS) study, 16% of donors were dissatisfied or felt a sense of loss. A lack of social support, financial strain, or physical complications contribute to this feeling. See article (1).
**Internal Bleeding — Approximately 1.3% of kidney donors experienced internal bleeding, a complication associated with high risk surgery. In a compiled study of liver donors from 2001-2012, 10.8% of donors required reoperation for bleeding within two weeks of the operation. See articles (1) (2).
**Blood clots or hematoma — In this study of kidney donors, approximately 0.07% developed complications relating to hematoma. Around 10-15% of liver donors have hematoma complications and require a surgical procedure for evacuation of the blood clot. See articles (1) (2).
*Vomiting — This is a Grade I Complication under the Clavien classification system and considered a minor complication. For kidney donors, 0.02% had vomiting issues post-operation. No reliable research data was found for liver donors. See article (1).
*Injury to other organs during transplant — Based on the resear data of the percentage of those with complications and the percentage of the complication, it can be approximated that around 1.02% of kidney donors have accidental puncture to other organs. See article (1).
*Digestive/Bowel Issues — Of 7.9% of patients who had procedure complications, 32% were attributed to digestive diseases. Complications showed decline over the study’s period of ten years. See article (1).
**Impotence — Around 5-10% of male kidney donors suffer from temporary or long-term pain in the testicle corresponding to donation side. For kidney donors six years post-surgery those who had a total nephrectomy were 3.5 times more likely develop erectile dysfunction compared to those with kidney reconstruction. Liver donors at one year were shown to have less sexual functioning and less sexual desire than the non-donor control group. See article (1) (2).
*Blood in urine– In a group of size of 242, 8.3% had blood in urine before kidney donors while 15.3% of the group had blood in urine after donation. Not enough research has been found on liver donors. See article (1).
*Job loss and financial burdens (e.g. too much time off, slow recovery, inability to perform job functions well) — In one study, 25% of kidney donors had difficulties with changing or applying to insurances. As for financial burdens, not enough research has been conducted for kidney or liver donors to reveal the entire impact of donation. See article (1).
*Back Pain — This is one of the most reported symptoms for both liver and kidney donors during the first weeks after surgery as a side of effect of pain medication or shifting of posture. See article (1).
*Fever — Around 6.6% of kidney donors have a one-time symptom of a fever that requires antibiotics. Not enough research has been done on fevers as a result of liver donations. See article (1) .
*Sore throats — Due to intubation, this is a common procedural effect for many major surgeries. This usually is not a major complication and abates with time. See article (1).
*Frequent Urination — UTI is a cause for the frequent urination after a kidney donation for around 19% of patients and it must be attended to. See article (1).
*Muscle Cramps and Spasms — Not enough research has been done on this complication for kidney or liver donors.
** Pain while lifting heavy objects (e.g. a child) — According to research, it is best and recommended to avoid lifting anything heavier than 10 lbs for six weeks post-donation. Lifting heavy will put pressure on incision and make the healing process harder. See article (1).
** Difficulty breathing due to buildup of fluid between the tissues that line the lungs and the chest, i.e. pleural effusion — Approximately 1.3% of kidney donors have a pleural effusion after the operation. Pleural effusions are one of the most common complications occurring in approximately 20.4% of liver donors. See article (1) (2).
*Kinked or Squeezed Intestine — Based on a study of 160 kidney donors, none of them had this complication. For liver donors, around 1-2% had bowel obstructions. See article (1) (2).
*Shock due to unexpected procedure (i.e. rib removal) — can be treated with counseling. Not enough research has been done on this particular complication for statistical support. See article (1).
*Swelling at incision site — usually abates with time but may need treatment. See article (1).
* Allergic reactions to medication (i.e. liver donor reported an allergic reaction to heparin) — This is a potential risk for all major surgeries so make sure there is no allergy to general anesthesia. There are also painkillers that are taken after surgery from a patient controlled analgesia and oral pain killers as those medications may have potential risks only if you are allergic. See article (1).
*Ovarian Cysts — There is not research to be shown that donating a kidney causes ovarian cysts but there may be potential issues to recipients of donor kidneys that have cysts. See article (1).
*Bruising and/or sensitivity at the incision site — Donors typically report tenderness and some pain at incision site while it heals. It is recommended to avoid contact sports or lift heavy for around six weeks until healed to avoid further complications or a hernia. See article (1) (2)
*Sweating, i.e. problems with internal temperature control –– may abate with time, usually can be treated.
To add a complication you have personally experienced, or to add source material, please write to info@alodf.org
If you have a complication. we hope you feel comfortable enough to share your experiences with the donors and potential donors on the ALODF support group which is for all living organ donors and those considering donation at https://www.facebook.com/groups/588973681237149/, but there is also a closed Facebook group for just donors who have complications https://www.facebook.com/group/livingdonorswithcomplications/.