My Research

I looked all over the web for any information I could find about what to expect before surgery, during surgery, recovery, and how it will affect the rest of my life.

Twenty-seven things that I have learned both during my initial search and during the process that I think you might like to know are:

1) My kidney will probably not be the only kidney my recipient will have the rest of her life. There have been cases where one living donor's kidney has lasted 20 or more years, but also some last 5 yrs., 3 years, 1 year, and there is always the possibility that the donor's kidney is never accepted and it dies without its use. It is very likely my recipient will have several kidney transplants and several donors in her lifetime.

2) After donating a kidney, should my remaining one fail, I will jump to the top of the waiting list, because had I not donated I would have naturally had my second kidney to fall back on.

3) It never dawned on me that bribery or sale or pressure would be used in a donation game, until I read that it happens, but it makes sense that it might come up as a thought for some in desperate circumstances or even big business thinkers, even from the most noble people. Just so that you know, IT IS AGAINST THE LAW to sell or offer any gift or position or favor that could be construed as pressure or coersion or sale for organ donation. (Maybe that has to do with my state or the insurance covering this surgery, because I have seen sites advertising selling your kidney. Well, this blog is about MY experience, right?)

4) BY LAW you will receive your position back at work after your recovery from organ donation if you would like to have it back. (Again, maybe it's MY state's law.)

5) Kidney donation is not saving a life. It is, instead, providing a better quality of life. The recipient has other options. They could wait for their turn on the donor list to come up. They could stay on dialysis the rest of their life. They don't need MY kidney.

During dialysis all of her blood goes through a machine to clean toxins out of her blood, the job of a functioning kidney, and travels back through her body collecting toxins that had built up since last dialysis two days ago, then goes through the machine again, and this cycle happens 8 times in those current 2 hours 45 minutes every other day, and the time goes up as the kidney function decreases, and most patients lose a few pounds or even 10 pounds of toxin filled fluid that could not otherwise be flushed out ...every other day! Yes, they could do this the rest of their life. Therefore, the donation is only offering a better quality of life, without dialysis for instance, and the endurance to dance or hike, if they want. Quality.

6) My recipient has a small bit of function left in her kidney, so she still experiences a bit of urination, but many with kidney failure don't urinate, and if they do make urine, they may not feel the urge to urinate, which can fill up the bladder and back up into the kidney again.

7) When the donor's kidney is placed in the recipient's body, the recipient may pass urine through the new kidney even before the new kidney has been completely attached during surgery!

8) The living donor and recipient go into surgery at about the same time, into side by side rooms. The living donor's kidney is removed, placed in a metal container, inspected, and brought to the recipient right away. A kidney harvested at death has to be kept frozen for a couple days, which can decrease its life or ability to function.

9) The donor is losing a kidney, but the recipient is adding one. The recipient keeps both of their unfunctioning kidneys. The donor's kidney is placed behind the recipient's hip for protection and shorter attachments.

10) If the donor ever, EVER, changes their mind regarding donation, they may back out without shame. They have their very own advocate who will help them back out gracefully. They pretty much keep the donor and the receiver separate, and they each seem to have a different team.

11) It is hardest, at first, for the donor's family to accept the news...it's a shock for them to hear, something they weren't expecting. They will likely ask lots of questions and tell you all the horrors they fear. They may go into denial, say its a desperate act of heroism or attention. They may make a big deal about the donor as a hero. Whatever the case, the biggest reactions are from the family, because they have the most to lose.

Outside the family there may be questions or comments, but their concerns, if any, are subtle and you will mostly hear general acceptance, get a blank stare just from not knowing anything about it and also no opinion, or feeling a need to comment with "wow, you are nice" or "good for you".

12) Every person will tell you this, and from what the doctors say it is true, that the donor's recovery is much more painful than the recipient's. Think about it. The donor is getting an organ and a section of artery removed, and the body's core is voluntarily traumatized, and this after a life of relative health which is what the donor is used to as normal. They will be experiencing pain and weakness for a while that they are not accustomed to. I have been told there is quite a bit of nausea as well.

The recipient has been tired and sick and weak for years. They will be able to do things they have been too tired to do in the past. They will be gaining health immediately and will not have anything removed from them.

It has been said that there is no benefit to the donor. All of the benefit is the receiver's.

13) After surgery, the donor needs to be regular in their annual medical check ups, eat healthily by staying away from prepackaged foods, processed meats, and other foods high in sodium content. They must stay hydrated and also exercise. They must also stop or stay away from high risk activities, like contact sports (boxing, karate, and so forth), skydiving, and anything else likely to injure their only kidney.

14) The donor, once donation is complete, may not use ibuprofen or drugs containing it (this is especially important for those with frequent migraines or twisted or broken body injuries from sports).

Also, no more medicinal herbs ... the kind you get at the health food store! If you use herbs for health, I am with you. I know how you feel about this and about the doctors' lack of understanding herbs. I get it. I feel the same. However, this is one of the conditions. If you don't plan to stop using them, then don't choose to donate. That is the choice you are given and have to make.

15) You will need somebody with you 24 hours per day, 7 days per week from the time you are released from the hospital until you go to your 2 week post-op appointment, and somebody needs to drive you to and from that appointment.

16) It is suggested that the donor plan on being away from work 4-8 weeks. 4 weeks if you work at a sit-only job, and 8 weeks if you are in construction.

For the donor, there is incredible pain for the first two weeks. After only 4 weeks' recovery, though, you are feeling pretty much like normal. However, there is a lot of trauma for the trunk of the body, its core, and it is highly suggested to give it time to strengthen. I have heard that there's still some pain for several months.

17) I was financially responsible for cancer screening, because (according to age) you should already be regularly checking for it. Other than that, my recipient's insurance will cover anything medically related to the donation, including tests, medication for pain, and complications, should they arise. It sounds like that is not always the case with others, so check it out.

18) There is ALWAYS a risk of death when you have surgery. ALWAYS. However, the risk is 0.03 percent (1 in every 30,000), and has only happened so far because of things actually not directly related to the surgery.

Correction: The following site talks about a few complications that were directly connected to the surgery, even a death; nevertheless, those living with complications still said it was worth it and would do it again. http://www.npr.org/blogs/health/2012/07/02/155979681/organ-donation-has-consequences-some-donors-arent-prepared-for

19) My kidney donation agency is very, very careful that I will not be putting my body at any risk or danger by donating. They were very thorough in checking everything to be sure I am healthy physically, mentally, emotionally, and financially--even more for my sake than for my recipient's, which is also important, of course.

I had many blood tests, lots of vials, but only about 4 pokes for blood labs, because they have something called a butterfly which makes it possible to change vials without my even feeling it, because the vials are changed at the end of a tube, rather than at the needle (which doesn't stay in the arm anyway). I think with those 4 pokes, they took 16 vials (not necessarily all full), which was something like 30 different tests! I also had a 24 hour urine collection, a chest x-ray, EKG, and a CT scan.

20) About 50% of the donors chose to donate because they felt what they describe as a prompting from their higher power to do so.

21) They said that it would take 3 weeks to 2 months from the time I turn in my first application papers until surgery. I had hoped to get the application finished and sent by the weekend, but I had trouble finding a local lab to do my blood work.  From the time I received the papers until my scheduled surgery, it will have been 5 months. We were ready at 3 1/2 months, but December is the busiest donation surgery month, and there was a donor swap surgery scheduled for the date we were hoping for on the first week in January. It probably could have been just over 2 months, had I completed my initial blood work quickly and already had my cancer screenings.

22) If you are a good candidate for donation but are incompatible with your chosen recipient, you can choose, if you would like, to be part of a donor swap. That means that each recipient has a chosen donor who is committed to donate a kidney in behalf of them. The specialists look for a good match for your recipient, while also looking for someone you would be compatible with. Surgery only happens when both are satisfied at the same time.

The donor swap that will happen on my first choice date is only two donors and two recipients. That was lucky, because they probably didn't have to wait very long to find a match. Last year they actually had several lined up together, but they were missing a compatible donor for one, so they waited. Finally, one came up. They were able to help 8 recipients, because that one donor was the missing link to make the full circle.

23) If I exercised regularly before surgery, I will recover more quickly. After surgery, they want me up and walking a couple of 10-minute walks each day, because they want to be sure I don't have any pooling blood or forming blood clots, to strengthen my core, and to keep atrophy from happening.

24) Age difference doesn't really matter, when you are talking about transplanting a kidney from one adult to another. As far as age difference goes, it is more about the relative size of the kidney. For instance, the kidney of an adult is not going to fit very compatibly with a small child.

There is an age limit to how old you can be to donate. I think this is because the rate of kidney function decreases with aging bodies. I am 48, and that is well within the age limit. My kidney functions at 98%, which is fine.

25) Over the next six months the kidney left inside my body will grow 50% to compensate for the loss of the other.

26) The donors live full, healthy lives, and the loss of a kidney doesn't generally cause long-term health problems. They may even feel better than ever (my guess is because of staying hydrated, being more careful what food they consume, and exercising).

27) The donors must come back for a post-op check up a year later, and then another after that (and maybe at 5 years?). (Well, with this insurance, anyway.)