My Personal Living Kidney Donor Experience

I don't believe I have gone into detail about my personal live kidney donor experience.  After reading breezysummerday's comment on Diabetes Wife's blog (whose husband went into renal failure in 2008), I have decided that maybe it is time!

First of all, I really do believe that my husband would not be here today had I not given him my kidney.  He had been a year on dialysis, and hated every second of it.  So much so that he was ready to just say the hell with it, stop dialysis, and let himself die.  If he had had to wait until a cadaver kidney was available, it most likely would have been too late for him, as he just did not want anything to do with dialysis anymore.  Dialysis is not a great way to have to live.  Many hours are spent hooked up to the dialysis machine every other day, and my husband had a very hard time of it, complete with horrible leg cramps afterwards that would literally have him screaming in pain.  That being said, hubby did not want me to donate my kidney to him, as he did not want to put me through that.  I cried and begged when we found out I was compatible, and he gave in.  There was never any pressure from him to donate my kidney.  If any pressure was applied, it was from me towards him, as I wanted to keep him around.

I went through many tests to make sure that I was healthy and that there were no underlying health conditions to preclude me from donating.  However, the first time the transplant was scheduled, hubby had some major medical complications going on (not kidney related), and the transplant had to be put off.  Unfortunately, it was put off for almost 6 months, at which time the powers that be decided that I needed to do all the medical tests all over again, just to make sure that I was still a viable candidate for donation!  Not to be deterred, I went through all the testing all over again, and then some.

On the day of the transplant, things went fine for my husband, except for him complaining that he "couldn't see" out of one eye, and that it hurt.  That righted itself within less than a day, and it was decided that his "dry eye" while under anesthesia was diabetic related.  Other than the eye, he started feeling better almost immediately.

As I started coming to after surgery, I realized I couldn't feel my left arm.  It was a numb feeling, as if I had fallen asleep with the arm over my head for too long.  I kept trying to "shake it out," but the arm wouldn't move, and it was purple in color.  My brother was standing over me, massaging my arm, trying to get color back into it.  And then the nausea started.  I will spare you details on that, but suffice it to say that they didn't give me medication in time enough to prevent this.  Most likely a reaction to the anesthesia, or possibly the pain medication.  I also had a "morphine pump" around my neck at some point, which enabled me to self-medicate as needed for pain.  However, my biggest concern was that I still couldn't move my arm.

After we went to our hospital rooms after surgery, I had a steady stream of doctors coming in to examine me.  They all looked worried, and I heard things like: "She'll need to learn how to do things with one arm," and "We need to watch for hemorrhaging."  It was obvious that they didn't know whether I would get my arm and hand back or not.  It's probably a very good thing I was doped up on morphine at the time.  They kept telling me to wiggle my fingers on the affected hand, only I couldn't.  Another thing that really freaked me out was that every time I fell asleep, I would wake up worried that somehow my arm was hanging over the edge of the bed and getting more injured.  Of course, that couldn't happen, but I would wake up and feel for it with my right hand, as I literally couldn't tell where it was.  After 2 days, my hand started to curve in like a "claw," and I had no control over it.  I was fitted with a brace to keep the hand in a normal position.  When I finally got out of bed, my left arm and hand didn't "come with" me, as I had no control over it.  When I wasn't wearing a sling, I had to literally pick it up off the bed with my right hand and cradle it as I walked.  And here's the kicker: they wanted to send me home after 3 days, with a totally paralyzed arm and hand!  At some point, I was finally able to wiggle my fingers, although I still could not feel them.  I guess someone figured I was "all better?"  One of the doctors (or PAs, or ?) told me to tell them I wanted therapy, and if I demanded that, they would have to keep me there.  So I did, and I ended up in the hospital for 7 days, the same length of time as hubby, who was feeling physically better all the time, but was righteously furious and depressed over what had happened to his wife.

When the cause of my injury was finally figured out, I was told that I had an extra cervical rib in my neck, which had put extra pressure on the brachial plexus nerves during my kidney removal.  My problem was called a brachial plexus injury.  Because of the position I was put in for the laparoscopic removal of my kidney, it put undue pressure on these nerves, and thus the paralysis.  Apparently, my arms were put over my head and secured for an extended time to get me into the "right" position for surgery.  My kidney donor advocate had tried to tell me that an open incision (larger scar, but under the circumstances, I would have gone for it!) would be the way she would go if she were personally going to do it herself when I asked her point-blank before surgery.  When I had attempted to discuss this with my surgeon before the transplant, he had dismissed her opinion.  Since I really didn't want to alienate the doctor removing my kidney and helping to transplant it into my husband, I didn't pursue this option.  Had I only known!

After the week, we were both sent home, both moving pretty slowly.  We had a family member at home to help for the first few weeks, which was kind of a necessity.  I went home with my arm in a sling, basically to keep it out of my way, as it hung from my shoulder like a piece of dead wood.  Fingers were moving more and more, but I couldn't feel anything, and the swelling in the hand was incredible.  I couldn't even tie my own shoes, or open the child-proof cap on my pain meds.  It was also left up to me to find a provider for occupational/physical therapy, as the transplant hospital was obviously not interested in dealing with me anymore.  (But they did pay for my therapy!) 

I had to change therapy providers in the middle of things, as the first one I chose really didn't know what to do with me, as they had never seen an injury like this before.  At some point, it was indicated to me that I was the "worst case scenario" regarding living donor complications at this hospital.  I have since run into others who have had mild brachial plexus injuries after kidney and/or liver donation, but nothing like what I went through.  And when the feeling started to come back (thank God!), it was extremely painful.  I have since wondered if the pain could be compared to the neuropathy that our hubbies feel, as I was put on some of the same type of meds.  The pain radiated from the left side of my neck, into my shoulder blade and back, and all the way down my arm and hand.  The only way I could sleep at night was to prop myself in a sitting position with multiple pillows, with more pillows to support my arm, as the pain meds just didn't cut it.  I was told that nerves will regenerate at about an inch a month, and that sounds about right, judging from my progress.  I was in therapy for almost a year, and it took about 2 years for me to get back the function I have now.

I got most of my arm and hand function back.  In fact, I regained more function than any of the "experts" thought I would.  I am extremely grateful for that, as some people with brachial plexus never do.  I have some arm weakness, occasional pain in my shoulder and neck, and some residual numbness in my left hand that never goes away.  The numbness/loss of feeling bugs me the most.  But I also sincerely feel that this injury should never have happened, and was totally unacceptable.  I believe that these injuries need to be taken more seriously than they are, and that not enough consideration is given to the donor.