Psychological, emotional, & physical needs, issues, complications after living donation surgery

Most resources and sites attribute one single paragraph to 'recovery' for the living donor. This gloss-over is because the medical community and the media, and consequently, public perception is that all transplants end happily for both the donor and the recipient.

This is not always the case. (See Stephanie's thread or this story about post-donation complications, or this liver donor inquiring about social security disability.)

Psychological Recovery

Long Term Health

Kidney Healthy Diet

Living Donor Pain Complaints post-surgery:

1. Surgical Pain. Yes, there will be pain. How much depends on the procedure used (laproscopic or open), and the LDs personal pain threshold. For the first 24 hours, the LD will have access to a morphine pump, an IV and a catheter. After approximately 24 hours, the catheter will be removed, the morphine pump replaced by oral pain medication, and the LD will be expected to take her first post-surgery walk. Fabulous milestones, except that the LD will now have to wrestle with their IV pole whenever she needs to use the bathroom, and be expected to pee in the 'hat' so nurses can record urine output for posterity.

2. During a laparoscopic procedure, an LDs abdomen is pumped full of CO2 (carbon dioxide) to give the surgeon plenty of room to work. This gas will remain in the LDs body for approximately two weeks. For some inexplicable reason, it manifests in shoulder area, causing discomfort and pain.

3. The pain medications used in the hospital and taken after discharge are opiates, and they can cause constipation. A prescription will be given for a medication to help alleviate this problem.

4. According to one study, the surgical scar and incision site caused occasional pain for 31% of LDs and chronic pain for 2%(4).

Of 167 living kidney donors at The Cleveland Clinic from 1983-1995, surgery and recovery were more painful than expected for 34% of LDs.

Sara was admitted to hospital in October and she described her stay ‘‘as a truly horrendous experience.’’ She described the pain after the operation as severe, intense, and distressing. ‘‘It’s like a knife going into you, no one could tell you how bad it is, I thought I was going to die, I was terrified, I really didn’t expect it to be like that’’(92)

See Risks page for more on Chronic Pain.

After approximately 48 hours, barring any complications, the living donor will be discharged. Usually the living donor and the recipient are on different floors of the same building and the staff will gladly take the LD to visit the recipient before leaving the grounds. The wheelchair is your friend, take advantage of it. You will be amazed how easily you tire.

Post-operatively, 6-8% of living donors felt ignored by medical staff, as if their welfare was no longer important.(4,5) (See Psych Recovery for more)

After Discharge:

IMPORTANT: Some transplant centers will refer a living donor to their primary care physician in the case of a post-operative complication, so they will not have to report it on their statistics. Do not allow this to happen. It is their surgery and therefore their legal responsibility!

1. Headaches and Back Pain have been reported in the first couple of weeks following surgery. These are usually the side effect of pain medications, or the unconscious shifting of posture and movement to prevent pain at the incision.

2. Some donors experience fatigue and lack of energy post-donation, manifesting itself in reduced endurance for sports and exercise, lack of concentration for work-related activities, and the need for more sleep than before donation. These symptoms can persist for weeks or months, and could be the result of low kidney function, or adrenal gland damage/dysfunction.

Living Donors have reported physicians denying the phenomenon being linked to kidney donation. Be persistent in regards to your symptoms. You are your best advocate.

3. Testicular Swelling: Known as Ipsilateral Orchialgia, this pain/swelling, sometimes up to grapefruit size, seems to occur mainly in the left testicle, and more commonly in men who have undergone vasectomies. It can abate within a few weeks, but in at least one severe case, more than two years post-donation, "searing pain like an intentional kick" exists during specific movements or activities. Surgery is sometimes necessary to alleviate the symptoms.

Some possible causes:

Infection

Testicular varicose vein

Hernia

Reduction/cut-off in the blood supply to the left testicle (which is already compromised during the vasectomy)

Hydrocele aka water on the testicle (symptoms reported up to 4+ years post-donation)

Detailed discussions here and here.

4. Thigh pain: Some living donors have experienced limb or thigh pain as a result of the position they were placed during surgery. This should diminish within days. However, lower limb pain can also be a symptom of nerve damage as reported by some living donors, so it is important to contact the transplant center if pain is extreme, numbness occurs or normal sensation does not return quickly.

Post-surgical depression occurs for a number of living donors, regardless of whether the recipient recovered successfully or not. (see Psychological Recovery page)

Protein has been shown to facilitate healing.

Even small amounts of walking promotes circulation and tissue growth.

Please see our Facts, Myths, Risks & Psychological Recovery pages for more potential long-term complications and risks related to living organ donation.

Much, much more to come....