Chronic Nerve Pain in Abdomenial area

[Tootsie1]

I donated my left kidney to my big sister on March 8, 2011.  I am happy I did this as she is still here to raise her 2 girls.  I am immune or allergic to all known narcotic drugs that are out there, so I got sent home with Ibuprofen and Tylenol as my pain meds.  I knew going in that I might have this issue, I talked to the surgeons and the anesthesiologist and was told that they have something they would try, which they did and I ended up being allergic to it. 
I was on leave from work for 8 weeks, when I went back everything seemed okay.  I was sore around incision, but figured this was normal.  Within a month of being back at work I couldn't put my abdomen against anything without it hurting.  If something or someone just slightly bumped it I would be in extreme pain.  This went on for awhile until my sister went in for her 6 month check up and asked her doctor about it.  He told her I needed to go in and have it checked.  I went in and was told they were sure what the problem was, so they sent me to the Pain Management Clinic at the University of Minnesota.  I went and seen Dr. Belgrade and was informed that they weren't sure what caused it.  So I went in for exploratory surgery on January 3, 2012 to see if they could find anything.  The only thing they found was excessive scar tissue build up. 
I was giving Ibuprofen and Tylenol and sent home.  I went in for my check up afterwards and was told that it is probably chronic nerve pain.  I have been going through the counseling and PT they provide to see if they can help elevate the pain.  I have pretty much been told there is nothing they can do.    I go back and see Dr. Belgrade in October to see what he says, he told me he hopes that the pain will be gone.  Unfortunately it is just as bad as it was a year ago. It is hard to sit for long, or even stand for very long. This has made my life very interesting. Especially  with 5 teenagers in the house. I haven't worked since November 11, 2011. 

Has anybody else had this problem?  I guess I am mainly venting to others that have gone through donating a organ.
Shari

[sherri]

Shari,

I am so sorry to hear of the complications you have suffered from the donor nephrectomy surgery. You mentioned that they keep giving you Tylenol and Ibuprofen. Ibuprofen is a non steroidal anti inflammatory (NSAID) and people with one kidney, including living kidney donors, should not take large doses of ibuprofen because it puts and extra strain on the kidney to clear it from your system. The hospital where you had your surgery needs to take responsibility as you are their patient even though this was elective surgery. Please contact your living donor advocate or other patient advocate at the hospital so someone could assist you. There should also be a phone number to call UNOS to report an adverse event or submit a complaint. It is negligent behavior to dismiss your complaint. There is a website run by a living donor who had a difficult donation experience. This may be helpful to you. http://livingdonorsarepeopletoo.com/how-to-report-your-living-donor-issues/

Please keep us informed and let us know how you progress.

[KellyN]

Shari - I'm sorry to hear that you are going through this. I too suffer from chronic nerve damage as well as muscle damage related to my kidney donation. I donated my left kidney in 2009 via open nephrectomy, I have an 8 in scar on my left side. After many, many doctor appointments, physical therapy, scans and many other medical procedures they finally decided that I was suffering from nerve damage and muscle damage. My pain on most days was between 8-10 out of 10. The surgeon could give no explanation of how it happened but think it could have been from the instruments that spread the incision open. They claim that it had never happened before (which I have a hard time believing) and they seemed flabbergasted on what to do with me. I became depressed and had a hard time dealing with my new life of constant pain.   After 2 years of constant pain, being unable to sit comfortably, sleep on my left side or be on my feet for a long period of time I found a pain medication that I could take, Cymbalta. (I also am allergic to many pain/narcotics) It was originally marketed for depression but later they realized that it helped with chronic pain. My pain is now down to a 2-3 but I do have days that it is higher. I am much more comfortable than I was but have come to a realization that this will be a life time issue. I do exercise and stretch my side daily but it just doesn't stop the pain.
I don't know if Cymbalta is something you could try but it has helped me. I really feel for you and hope that there is something that they can figure out to help you in your quest to stop the pain you are having. From someone that has been there and is still struggling I wish you the best and hope that you  continue to update us on your progress. Best wishes.

Kelly

[sherri]

Kelly,

Your story breaks my heart. I am so sorry that you too have suffered as a result of becoming a living kidney donor. Before donation surgery were you informed about the possible risk of nerve damage? I do not recall having that explicitly included in the list of possible complications. Did you file a lawsuit to seek damages related to the surgery and get compensation? Have you ever consulted with a lawyer? Sounds like you have a adverse event that has effected your quality of life tremendously. And I agree with you, there must be others who have experienced similar outcomes but since follow up and reporting on donors is sporadic and not mandatory it is hard to doctors to be able to inform patients about the risks if they are not interested in keeping accurate records about this type of surgery. My inclination is that donors do not sue for all sorts of reasons so it is hard to really know all the outcomes.

Glad to hear that Cymbalta is helping. Letting others know your story will help educate donors and their families and hopefully the medical staff as well.

All the best,

Sherri

[Tootsie1]

Sherri, I don't remember if I was told about nerve damage being an after effect of surgery.  I went through the paper work that was giving to me about donating( I just recently went through it again.)  It does say it is a chance, however I don't remember actually having someone say it to me.   
Kelly, thank you I will have to look into Cymbalta.  I have not met many people who have an allergy to many pain/narcotics. 

I am going to look into getting my records and talking to my Donor Social Worker next time I am in the Twin Cities.  I am going every Thursday till mid October.  Thank you to everyone for reading this and posting.

Shari

[sherri]

Shari,

I happened to have been researching some information at the library ( I am a masters student) and I came across this study. I thought it might be of interest to you and other donors who suffer from chronic pain. Clearly, the conclusion of the research is that more follow up and investigation into this matter is necessary. It won't be a priority unless donors come forward and make it clear that they are a priority. Transplant centers cannot do surgeries without donors but we are generally a group who doesn't complain and doesn't want to take away attention from our recipients so funds will not be allocated to donor research unless we lobby for it.


sherri


Chronic pain following donor nephrectomy – A study of the incidence, nature and impact of chronic post-nephrectomy pain

Owen, M., Lorgelly, P. , and Serpell, M. (2010) Chronic pain following donor nephrectomy – A study of the incidence, nature and impact of chronic post-nephrectomy pain. European Journal of Pain, 14 (7). pp. 732-734. ISSN 1090-3801 (doi:10.1016/j.ejpain.2009.11.013)

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Abstract
Chronic pain is a consequence of some types of surgery, but its incidence following open donor nephrec- tomy has never been investigated. We surveyed 123 patients who underwent open donor nephrectomy at our institution over a 10-year period, to determine the incidence, severity and nature of chronic pain and its effect on quality of life. Of the 81 (66%) responders, 27 (33%) had experienced prolonged pain, and 21 (26%) still had chronic pain related to their surgery. The overall incidence of severe, disabling pain (visual analogue score P7) was 12% and of neuropathic pain was 14%. The average loss in quality adjusted life years (QALYs) was 1.053 for chronic pain sufferers, but was 1.851 for those who suffered specifically from neuropathic pain. Only one third of patients with chronic pain were receiving any treat- ment, and none were receiving neuropathic adjuvants or specialist pain management interventions. We conclude that the incidence of chronic pain following donor nephrectomy is underestimated and there- fore under managed. Given the voluntary and altruistic nature of this procedure, and the enormous per- sonal and social benefits which result from successful donor transplantation, those involved with the preparation and post-operative management should be more aware of, and actively question donors about chronic pain so that diagnosis and appropriate therapy can be commenced as early as possible.

[dodger]

Sherri, you amaze me with your dedication to helping people that come here and post questions.  I'm glad you are in our corner.  Thank you so much.

[sherri]

Dodger,

Thank you.

It has been almost 5 years since my donation surgery and I am still always interested in hearing other people's stories and particularly from living donors. I have been in a health care field for almost 20 years (vascular sonographer/ultrasound technologist) but after becoming a family living kidney donor I really wanted to try and help other families cope as they face a medical crisis like end stage renal disease and/or transplant. A year after my surgery, I returned to school to do my prerequisites for nursing school and made the decision to change my career mid life. Some days I question myself and ask "what was I thinking?'.  I am currently a nursing student at the University of Maryland School of  Nursing in their CNL (Clinical Nurse Leadership) program working towards my RN and Masters in Science. I hope to graduate in May 2013. I am not sure where this will bring me, but I hope to find my niche in transplant medicine somehow. I think living donors need more advocates and I hope to be able to fill that role. Only time will tell.

But thanks for the feedback. Am always trying to be balanced and non judgmental with my patients and their families. I also love the camaraderie of this forum.

Sherri

[Tootsie1]

Thank you to everyone who has responded. 

Sherri thank you for the site livingdonor101, it has helped quite a bit.  The information on there is awesome.  By reading what is there and the other sites that are suggested.  It has helped me realize that I have been going through quite a few of the symptoms listed. 

Lately, I have been mad, anger, pissed off, and upset about everything.  This actually has been going on for about a year now.  I haven't told anyone how I feel, because I don't want pity or  a lot of sympathy or hear "I know what you are feeling" from friends that really don't. 

Because of this my marriage is starting to suffer and I am not sure how to fix everything.

Shari

[sherri]

Tootsie,

What you describe is not uncommon. Transplant surgery brings out a whole array of dormant feelings especially, I find, with family donors. There are feelings of guilt, obligation, love, fear, anger. So so many. The best thing you can probably do is find a professional counselor. You can go through your insurance or try the transplant center where you donated if that is feasible. You may want to do this alone or with your spouse/partner. In either case, it is hard to sort out feelings alone and very often having a third party who is trained to help people examine difficult issues helps to repair relationships with oneself and others.

There is a sense of loss for some people after donating. In your case everything didn't go as planned or expected so there is even more baggage to deal with. You may be having some issues related to depression which can often be helped with both pharmacological and non pharmacological means. Let us know how it goes. Just knowing you are not alone in your feelings sometimes helps to make you feel a little more balanced.

All the best,

Sherri