Now that the dust has settled a little, I feel the need to write about my experience of being a live kidney donor. I’m not doing this to brag or remind people of what a big hero I am (several people used the H word shortly after my surgery and it was embarrassing) but I’m hoping others considering donating will find this article while researching.
I didn’t donate my kidney to a stranger out of the goodness of my heart. Like most donors, this was personal. My wife went into kidney failure over three years ago and was waiting on the transplant for two years. Short of being a dialysis patient myself, I saw first hand just how difficult and miserable the life of a person with dead kidneys can be. My decision to donate my kidney wasn’t heroic or noble and selfless. I simply wanted my wife back.
Unfortunately, I couldn’t donate to my wife directly. The very same day she was approved for transplant, I called the clinic and told them I wanted to donate to her. A short blood test later and I got the bad news: our blood didn’t mix. That was that.
The news was hard to swallow. From day one we always hoped I’d be able to donate to her because it would be the quickest and easiest way.
Fast forward to last year. We waited for a cadaver kidney (average wait two to four years) and went through the crushing disappointment of others who got turned down for donation for various reasons. Good news finally arrived when we learned our hospital joined the paired donation program. As a willing donor, I could give my kidney to a compatible patient and in return my wife Tammy would get the perfect kidney for herself. It took more red tape and more waiting, but finally in September of 2014 we finally had our surgeries. A transplant with a live donor kidney for her, and a nephrectomy got me to give my kidney to somebody else.
So that’s the quick gist of how I came to be one kidney short. If you’re considering giving the gift that can literally give somebody their life back, what can you expect? There is plenty of info out there, but here is my two cents.
The Money - As a donor, you won't get any medical bills for the testing, appointments, surgery, or hospital stay. Not a cent for anything. A couple of bills slipped through the cracks for me, but I just handed them over to the financial lady at the transplant clinic and she took care of it. In my case, my wife was the recipient under my insurance so it came out of the same pocket anyway. But the donor’s costs are always covered by the recipient's insurance.
As far as other costs like travel and lost wages, that’s on you. My time off work was covered by FMLA and I was eligible for short term disability. I can’t predict your financial situation, but in my case it worked out well. If being off work for several weeks would be a deal breaker, don’t underestimate generosity of others. There are many websites out there designed to help people raise money for medical costs through online donations.
The Testing - When I made the first call, the nurse coordinator asked me a set of questions about my health and reasons for wanting to donate. This was the first step of weeding out anybody who isn’t a candidate. I got through that alright and scheduled a blood draw for a simple test to see if my blood mixed well with my wife’s blood. This can usually be done by any medical lab in your area so no travel is required if your patient lives far away.
If the cross matching is successful, (in my case it wasn’t with my wife. Months later, when I was approved for transplant in the paired donation program, I moved forward with the process), you’ll move ahead with more tests and appointments. This includes thorough physicals, xrays, ekg, etc. Nothing too difficult or scary. You’ll also meet with a psychologist and social worker. They want to be sure that you’re a willing donor that made the decision by your own free will and you’re not being pressured in any way.
This is a good segue into a very important point. Through the whole donation process you can back out at any time for any reason. In fact, you don’t even need to give them a reason. The hospital will even go as far as “lying” to your recipient if you don’t want to tell them that you changed your mind. They’ll simply say you didn’t work out as a donor for whatever reason and that’s that. You’ll never sign any sort of contract and you can change your mind right up to the second before they put you under in the operating room.
You’ll also see a donor advocate, financial counselor, pharmacist, and meet with a nephrologist (kidney doc) and surgeon. All these appointments and tests take time of course. Expect several months or longer for all of this.
Finally, if you pass all the tests and exams, and everybody with a degree and a lab coat thinks you are a good candidate to donate a kidney, your case will be presented to the board. Once a week a group of hospital bigwigs meet to review all kidney donors and transplant patients to officially decide if they will go on the list. In my case, I was accepted.
The Surgery - Exactly how you lose your kidney will differ depending on the hospital and preferences of the medical staff. In my case, a Urologist using a robot did my surgery. Five small incisions in my abdomen around my belly button were used for various scopes and laparoscopic tools. A long incision around 6-8 inches right above my “bikini line” was used to pull my kidney out.
The surgery itself wasn’t anything too spectacular. It was the first operation I’d ever had, so I was a little nervous in general. I’d never experienced going under with anesthesia and waking up with holes in my body. They gave me something via IV to relax before I went into the OR and I remember getting moved onto the operating table. That was it. The next thing I knew, a nurse was waking me up in the recovery area.
This will differ from person to person, but I felt just fine in the recovery room. I had very little pain. Once I was moved to my hospital room and the post-surgery meds wore off, the pain started to show up but was never all that great. While I was in the hospital they gave me a mixture of oral narcotic and non-narcotic meds.
My surgery was on a Wednesday and I went home on Saturday. Once I was able to pass gas and use the bathroom for number two, they basically left it up to me when I wanted to go home.
The Recovery - Again, this will differ for everybody, but the pain I experienced was never all that bad. The pain meds kept it manageable and it basically felt like I did way too many sit-ups. Pretty typical for any abdominal surgery.
The biggest challenge was the overall feeling of feeling….shitty. My body went from two fully functional kidneys down to one and it was not happy about that at all. I was tired all the time and just didn’t feel very good. I spent the first week at home sleeping or just lying in bed watching TV and had very little appetite. I lost about ten pounds from not eating very much (nasty hospital liquid diet while I was there didn’t help).
As the days went by I slowly got stronger and felt better. As of this writing, it’s been about 3.5 weeks since my surgery and I finally feel like myself again for the most part. My energy and endurance isn’t 100%, but I’m getting stronger every day. This will vary depending on your age and health, but 3 to 6 weeks is typical recovery time. How long you’ll be off work depends on what you do and how physical it is.
The good news is people with one kidney lead normal healthy lives with virtually no side-effects or consequences, so I’m told. I have no reason to doubt that, although mother nature knows what she’s doing and gave us two for a reason. Time will tell. I have no special instructions other than lead a healthy life and try to stay away from stuff like mixed martial arts or pro football. My dreams of being a starting wide-out for the Packers are over, but I'll learn to live with it.
When I met with my urologist for a follow up visit a couple of weeks ago, he said something that really hit home for me. My surgery was unique because as the patient, it did me absolutely no good whatsoever. I never really thought of that before and I had to laugh. It’s true of course, but the good feeling of what I did will stay with me forever. As a donor in the paired donation program, not only did my wife get a kidney and a new lease on life, but another person did as well. Somewhere out there is a person just like my wife who is walking around with my kidney and I can’t begin to describe how great that makes me feel.
Would I do it again? Absolutely, 100%, yes, a thousand times yes. It was an experience that I’ll never forget and if feels so great to do something so good for somebody else. If you know somebody suffering from kidney disease and chained to a dialysis machine and you’re on the fence, please donate.
If you want to ask me any questions, my virtual door is always open. Please don’t hesitate to email me at firstname.lastname@example.org.
*Everything above is my personal opinion. I’m not a medical professional and I don’t pretend to be. Talk to your doctor and your family.