Potential Complications – Post Donation
THIS PAGE IS UNDER REVISION
This project began because donors were asking Sigrid for an easily understandable list of possible complications. In response, Sigrid started a list which she 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 have nothing to do with the organ donation, but are here because living organ donors thought they were related to their 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 ALODN focuses its attention on helping donors who have already decided to donate or who have donated. One problem, from the ALODN’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 this website. Sigrid personally thank 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 passed 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.
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.
Here is the list of potential complications (they are not in any particular order):
*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).
*Low risk of an 8-11 fold increase in the relative risk of end-stage renal disease (ESRD) for kidney donors. See article.
*Studies conducted in Canada, Norway, and the United States have all shown an increased risk, approximately 5.5%, of gestational hypertension and/or preeclampsia, post living kidney donation. Low rates of other risk factors have also been reported; these include a lower likelihood of full-term deliveries, higher likelihood of fetal loss, higher associations with gestational diabetes, and higher risk of proteinuria. However, these statistics have been highly debated due to the inability to design comprehensive studies that restrict the cause of complications directly to living kidney donation and not an amalgamation of underlying factors. See article.
*No complications during pregnancy due to living liver donation have been cited. Though complications are not expected on a physiological basis, there has not been sufficient research conducted regarding this potential long-term effect, as this procedure is recent and uncommonly practiced. See article.
*Bruised, cracked, broken, or removed rib.
*Hernia(s) — usually can be repaired surgically.
**Depression — approximately 22% of liver donors self-reported depression symptoms as a result of the donation. For kidney donors that number has been reported as anywhere from 10 to 30% — Usually the depression is short term and can be treated with counseling. See articles (1) (2).
**Loss of appetite — Common in surgical procedures. Treatable based on the cause. See article.
*Muscle cramps and spasms — Treatable dependent on the cause. See article.
*Biliary complications — Approximately 7-9% in one local study. Treated by post surgical drainage. See article See article.
**Difficulty breathing due to a buildup of fluid between the tissues that line the lungs and the chest, i.e. pleural effusion– can be treated but the sooner the better.
*Infection, at the incision site or more general, experienced by 7% of kidney donors –can be treated with antibiotics. See article.
*Infection, at the incision site or more general, experienced by 7% of kidney donors -can be treated with antibiotics.
*Urinary track infection(s) –can be treated with antibiotics; seen in 1.3% of kidney donors. See article.
*”Phantom” kidney pain — can be treated with counseling. See article.
*Bruising and/or sensitivity at the incision site — usually abates with time. See article.
*Restlessness, anxiety, insomnia — can be treated with counseling (reduced with Motivational Interviews) or could be a sign of kidney disease that needs medical attention. See article.
*Sense of loss; bereavement — can be treated with counseling. See article.
*Swelling at the incision site — usually abates with time but may need treatment. See article.
*Impotence — usually abates with time but may need treatment. See article.
*Blood clots — treatable with medication.
*Fever(s) — treatable with medication; observed in 6.6% of patients. See article.
*Injury to other organs during surgery — may be treatable, depends on what type of injury and how severe. See article.
*Pneumonia — needs treatment. See article.
**Sore throat — usually abates with time. Probably due to intubation. A possible complication for any major surgery.
*Back pain — usually abates with time. See article.
*Internal bleeding — requires treatment. See article.
*Abdominal pain — usually abates with time. See article.
*Shock due to unexpected procedure (e.g. rib removal) — can be treated with counseling. See article.
*Fatigue — usually abates with time. See article.
*Kinked or squeezed intestine — usually can be surgically repaired. See article.
*PTSD because of complications — can be treated with counseling. See article.
*Sweating, i.e. problems with internal temperature control — may abate with time, usually can be treated.
*Job loss and financial burdens (e.g. too much time off, slow recovery, inability to perform job functions well) — there are some charity options but not many. See article.
*Reduction in income due to lost opportunity or fatigue — disability may be an option See article.
*Bloating — usually abates with time. See article.
*Frequent urination — usually abates with time. See article.
*Guilt feelings if recipient doesn’t do well — can be treated with counseling. See article.
*Sense of abandonment by society due to difference in attention pre-surgery vs. post-surgery — can be helped by donor support groups and/or counseling. See article.
*Pain while lifting heavy objects (e.g. a child) — usually abates with time. See article.
*Repair surgery(ies). See article.
*Constipation — usually abates with time. See article.
*Bowel obstruction — can be treated or surgically repaired. See article.
*Nausea — usually abates with time. See article.
*Nerve damage — sometimes can be treated; Occurred in <1% of donors. See article.
*Mild Hypertension — treated with a single dose of antihypertensive medication; seen in 7% of donors. See article.
**Allergic reactions to medications. For example, one liver donor reported an allergic reaction to heparin. A possible complication for any major surgery. See article.
*Blood in urine.
To add a complication you have personally experienced, or to add source material, please write to firstname.lastname@example.org
If you have a complication. we hope you feel comfortable enough to share your experiences with the donors and potential donors on the ALODN 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 have complications https://www.facebook.com/group/livingdonorswithcomplications/.