sloaner,
I have been searching to see if there have been any studies discussing your issue, adrenal insufficiency after living kidney donor nephrectomy. I haven't been able to find much. There have been studies discussing all types of complications including adrenal hematoma or bleed related to the surgery. If you are interested in searching go to googlescholars.com and type in adrenal injury after donor nephrectomy or other search words related to that. Some studies will come up. One study that I had found a while back, done in England where there is a National Healthcare System so tracking is easier, discusses chronic pain s/p living donor nephrectomy. this study looked at donors over a 10 year period. Here is just an excerpt discussing donor pain. ( Owen, M., Lorgelly, P., Serpell, M., (2010) Chronic pain following donor nephrectomy. European Journal of Pain. 14 (7) 732-734.)
"Despite this severe, iatrogenic chronic pain, few subjects received specialist pain management. We did not specifically ask the reason for this, but it may be because they were reluctant to complain. Free statements from two subjects exemplify this sentiment below:
‘‘I didn’t feel comfortable telling the surgeons about the pain. I don’t want anyone thinking I regretted the decision – I’m still glad I was able to do it”
‘‘I never moan or bother with the pain. I’m just glad that my brother is better”
Donor nephrectomy patients may be embarrassed and reluctant to admit they have chronic pain, so delicate appraisal may be required. Those who donate kidneys in the UK are selected because they are fit, healthy, well-motivated individuals who are prepared
to undergo major surgery for entirely altruistic reasons. Disabling pain in this group of patients has a potent deleterious impact on
quality of life, especially if needlessly allowed to continue through under reporting. Clinicians need to inform patients that chronic pain is a possible long-term outcome after surgery, but that appropriate treatments can be quickly established once the diagnosis is made. Though difficult to prove, the consensus is that pain is less likely to become chronic if treatment is started earlier. If these issues are covered openly by the clinical team, it is unlikely that donors will refuse consent for surgery. Chronic pain had not been highlighted by previous studies on
donor nephrectomy, and future studies need to look at this more specifically, especially with regard to risk factors. Risk factors for chronic pain after other types of surgery have been identified.
These include severe acute post-operative pain, pre-existing chronic pain, psychological (particularly anxiety), surgical and genetic factors. (Kehlet et al., 2006). If these risk factors are also confirmed for donor nephrectomy patients, it allows identified patients to be more closely monitored and aggressively treated. Donor nephrectomy patients do an enormous service both to the recipients and to the NHS (approximately £240,000 net savings to the NHS per successful graft over a 10-year period, which is the average graft survival. (UK transplant Factsheet, 2007) The transplant team are in the ideal position to screen these patients postoperatively, and should be able to make a prompt diagnosis and initiate treatment or referral. Our centre now follows up all donor nephrectomy patients at a dedicated clinic where all post-surgical issues can be dealt with as soon as they arise."
Living donors are a vulnerable population and need more protection and advocacy. The transplant community has failed to recognize the psychosocial issues related to this population, especially in family donors. Some transplant centers protect non related donors by making the eligibility process more time consuming, ensuring an independent living donor advocate and setting a mandatory wait period for surgery so that potential donors can have time to decline if they feel pressured. The assumption for family donors is that since they may receive a benefit then they need less protection. I believe it is the exact opposite and the system needs to recognize its short comings.
Donors who do suffer complications often feel uneasy, embarrassed, not "entitled" to complain as they are not the "sick" patient. After all, all we heard through the process was how safe this is, how easy and minimally invasive the surgery is, go home after two days and you only need one kidney to live a healthy life. So how is a patient supposed to feel comfortable expressing concerns. It takes a long time for the medical community to recognize emotional and mental health concerns in vulnerable populations. In my mother's generation there was no such thing as postpartum depression. Mothers were supposed to go home and love every minute being with their babies. A little baby blues was just "hormonal" and the doctor told you to go home and rest. No mother dreamed of complaining, what would people think? Now we know that postpartum depression is very real and needs to be treated appropriately. No one's complaints should be minimized. The medical community needs to be educated and donors need not feel shame in recognizing that something is not right. I hope donors who have had negative outcomes, and even those with good outcomes, will come forward and try to educate those who are supposed to protect us.
BTW, Fr. Pat asked in another post if there are countries following donors. It appears from this article that this center does follow their donors. does not say if it is for a lifetime.
"Our centre now follows up all donor nephrectomy patients at a dedicated clinic where all post-surgical issues can be dealt with as soon as they arise."
Medicare should be following donors for a lifetime, the same way they follow recipients. There are tumor registries, other surgical registries to study outcomes. Donors deserve more. We save Medicare and enormous amount of money by keeping their patients off dialysis.
All the best to those donors still suffering.
Sherri