6 weeks post donation

[Mooge]

Hi all,

Today is six weeks since my non-directed donation. Back at work for a couple of weeks already. Back to walking 5 km a day, just like before the donation, and feeling pretty good in general. Maybe a little more tired in the evenings than before the surgery, but that seems pretty normal to me.

As you may remember, I had an open nephrectomy due to anatomical weirdnesses in my left kidney, in general they don't do right-side nephrectomies laparascopically over here, at least not at my transplant center. I have a long (but nice) scar on my right side that is not giving me any trouble and not much pain at all any more.

I have one fairly troubling complication that I think I mentioned before - a pretty large abdominal bulge on the right side that seems to have been caused by cutting an intercostal nerve (between the ribs) that would have been better left intact. The nerve damage somehow releases the muscles in the right abdomen and causes the "flank bulge", as it's called in the literature. Not a terribly common complication, but a recognized one. Feels like I swallowed a small bowling ball. I wear an abdominal binder 24/7 and it cuts way back on the discomfort, but as many of you know - wearing a binder is not great fun. Still, for now it is doing the trick. The docs are "really hoping" that the condition resolves itself over time....

In any event, I have decided not to discuss the problem - except on this forum, haha. I feel like I took a calculated risk with my donation and I'm glad I did, as my recipient is doing very well. When people ask me how I feel I tell them fine - which is mostly true. I'm trying to get my head around to a place where I am completely at peace with the outcome of the donation - even if I have to live with "the bulge" in the long term. Of course, I'd be happy to hear from anyone who has experienced this.

Did some blood work this week and things look pretty good. Creatinine is fine. For some reason this week they checked uric acid and amylase for the first time since the surgery, and they are both higher than normal, anyone else have that? (Of course the nephrologist will get the results, just crowdsourcing here....) 

Thanks for all the support,
Mooge

[Clark]

Best wishes that it does resolve, soon. Take care, and congratulations!

[WilliamLFreeman]

Mooge,
     As you know, I am sorry that you have the complication of flank "bulge."  From what I see of pictures of other people with it, "bulge" is an understatement -- more like "projection" or "hump" in them.  I hope yours is not as severe as in those pictures.
     In his recent posting on Dec 8 titled "5 years and healthy," Oldnslow mentioned that his "assymetric muscle condition where the incision was disappear[ed]" by "gym workouts."  I do not know if he had the same "flank bulge" caused by the same problem [nerves to some muscles of his abdominal wall], though.  You might email or message him to ask what was his type of nephrectomy surgery, and did he get a "flank bulge" from it.
     I hope LDO posters who had an open nephrectomy resulting in a flank bulge report ideas on LDO.  We all can benefit from learning more about this.
     I also hope you can get it under control, if not resolved completely, before the hot summer arrives to make a stomach binder more uncomfortable.
     AND, I am glad that you are doing well otherwise -- and your recipient and her new used kidney are doing well together, too.   
Bill

[sherri]

Mooge,

Was thinking about you. Glad you posted your update. Sounds like you are recuperating well aside from the effects of the open incision.

You asked about the uric acid and amylase. Uric acid is excreted by the kidney so makes sense to look at that. In terms of the amylase they may want to check about your "bulge" and make sure there was not pancreas damage and no leakage of amylase. Have you sorted all this out with your surgeons? The best way to know why a test is ordered is to ask. Hope you get a chance to meet with your transplant team.  We all take on a risk as donors, but certainly no need to accept any untoward side effects. Hope the "bulge" gets better over time. How was the experience overall?

Keep us posted. Hope your recuperate well and return to pre kidney donation health soon. You did have a more complex surgery so it may take some more time.

All the best,

Sherri

[Fr Pat]

Dear Mooge,
     Hi. I had open donation surgery, but on the left side, about 12 years ago. I had general abdominal swelling for a while, but no bulge so as you have, so I don't know if these two suggestions would be of any help to you, but I'll pass them along just in case.
--- I found that vigorous self-massage of the incision area and nearby (as far as pain/discomfort would permit) seemed to help reduce the swelling and pain. I theorize that perhaps it helps the circulation in the small blood vessels in the area and perhaps help nerve healing? Not a scientific response, and perhaps it was just the good effect of wishful thinking, but I pass it along anyway, even though your problem is different.
--- Some donors have suggested finding a licensed massage therapist who has had experience in helping post-op patients in their recovery. Apparently there are massage techniques designed to help surgical healing. Perhaps you might even find one who has previously helped patients with your type of problem?
     best wishes,
        Fr. Pat

[WilliamLFreeman]

Mooge,
Please see today's reply by Oldnslow in his post "5 years and healthy." His experience might be relevant to your situation.  (If you want to do his kind of exercise because it may help rein in your flank bulge, please check with your surgeon about when to start -- I would guess not before 2-3 months.)
Bill

[Mooge]

Thanks for all the supportive replies. My surgeon has mentioned physical therapy but it will be another month and a half before I can even start. Meantime, as I said, I am fine other than this issue - so all's well!!!

[DariaChe]

Hello Moogie,

Can I ask you about what exactly doctors said about your left kidney?

[Mooge]

Hi DariaChe,

When they did the CT just a couple of weeks before the surgery was scheduled they found that my left kidney was attached by four arteries instead of the usual one. That disqualified it from donation, since there is no way to attach the arteries to the recipient. For me it works fine, though.
Fortunately the right kidney was attached in a more "conventional" way, with one artery, so there was no problem donating it, although it meant an open rather than laparascopic procedure.

Mooge

[Oldnslow]

Mooge

I am not sure if I had the same bulge or not.  It was not as large as a bowling ball, but it was obviously more pronounced then my right hand side.   I never thought to measure it and just assumed it was due to a 4 inch incision.   The exercise does seem to be helping a lot but I would not have tried this torso twist anytime soon after the surgery.   I think it would have weighted six or more months.   Just cautious.    Walking, yup, weight lifting, no.   I figure that you have the rest of your life, so what is the hurry.  On the other hand, if there is a known benefit to exercising quickly, and an incremental plan to initiate it, that may be beneficial.   Maybe others can comment on that. 

Oldnslow

[WilliamLFreeman]

   OLDNSLOW:  I assume from your post that it did not take 5 years of torso twisting to finally reduce your asymmetry, but rather that you started doing torso twists only in the past few months.  Is that correct?
   MOOGE:  Not being your surgeon or physical therapist, I do not know all your particulars.  As I understand it, though, cutting the intercostal nerves has likely left your lateral abdominal muscles -- the muscles around the bulge -- just flaccid and stretched, with no innervation to even keep their muscle tone.
   I do know that the human body's ability to compensate to repair and rehabilitate, and even (more interestingly) to reprogram itself, is sometimes amazing.  Several stories by the neurologist Oliver Sacks in his books show that even the nervous system can reprogram itself.  In this situation, even if the intercostal nerves do not grow back, and (if they do grown back, a process of months) even before they re-innervate the muscles by growing back, proper exercise may "reprogram" those muscles to regain their muscle tone and reduce the flank bulge considerably.
   If all that is your situation, sit-ups ("stomach curls") may help a bit, but they strengthen primarily the abdominal in the front -- producing the "6-pack abs" of body builders.  The torso twist is better because it involves those lateral abdominal muscles, and thus will involve those muscles around the flank bulge that currently are just flaccid & stretched.  Probably doing both exercises would be best.  After the surgeon & PT say it is OK, start with light weights or resistance for both the curls (sit-ups) and torso twist.  If you want to try this, PT should be able to give you a schedule of starting light and progressively increasing resistance or weight for both exercises.   PT should be able to tell you as well how to improvise to do the torso twist without a fancy, expensive, machine.    PT may also have suggestions for additional exercises.
   BTW, if you do elect to start these exercises when given the go ahead, and if your get your flank bulge to resolve, that may be worthy of your case being written up as a case report in the American Journal of Transplantation [or similar].  Although flank bulge may appear to be not a frequent side-effect of open nephrectomy, it obviously does happen.  I am not aware of a journal  article that discusses how best to resolve it non-surgically.  (You could ask PT to check the PT literature as well.)
   SO, I suggest that, before starting to exercise, you ask someone to take several high-quality "before" pictures of you, with a good digital camera with high pixels.  Take several views (front, back, front off to the side, back off to the side, etc.), focused on your right side from your lower rib cage to the top of your hip bone.  The pictures would be both for your own sake, but also in case your experience should be reported in the surgical and PT literature, to help those future living kidney donors receiving an open nephrectomy who end up with the same condition.   
   AND, in any case, I & we LDOers hope you get back to normal [= "normal-with-a-scar"].   
Bill