If I Only Knew Before I Donated...

[alyfaye]

It's funny that you would suggest that as I have been vegan for 3 years I credit much of my quick recovery to my diet.

[willow123]

Thank you for posting this. It validates many of my own experiences with doctors over the past few years.  My husband's sisters have an inherited kidney disorder and he will be participating in a paired exchange drawing this June.  Over the years he has been determined to donate his kidney to one of his sisters, and I have had many chances to speak with doctors at many elite institutions. Basically, they have all told me the risks are minimal and suggested that I might be paranoid.  I am extremely concerned about fatigue as my husband has quite a gruelling job, and one prominent surgeon told me he had never ever heard of any case of where the donor had a problem with fatigue.

The followup that has been historically done on living donors is atrocious and, in my opinion, unethical.  One doctor told me there was no funding to thoroughly follow donors.  Without good followup, the adverse event statistics are just a shot in the dark. I think all the money involved has created gigantic industrial juggernauts that make it hard to question or change the way things are done.  It's not that the doctors don't care about patients, since they clearly do, but rather they are just being swept along with everyone else.

One thing I love about this board are all the references to the clinical journals addressing the ethical issues of living donation.  The decision to donate is not really like the decision to get in a car, because most people need to get in a car at some point or other to go to work or the store or go on vacation, etc.  Nobody needs to donate a kidney and one surgeon told me that kidney transplants aren't even considered life-saving but rather life enhancing because they improve the quality of life.  But it is statistically inevitable that some kidney donors are going to have bad outcomes, and as the number of living donations rise, the number of bad outcomes will probably also rise as well.  So while there are thousands of patients with an improved QOL on the one hand, we have to ask ourselves as a society how many perfectly healthy people are we willing to tolerate becoming less so?

[dodger]

Well said Willow.  Thank you.

[PhilHoover]

put up every possible roadblock...and wouldn't even think about reviewing my case further until I had resolved all of the potential "health issues" that were identified...there were 3, as I recall.

I had a MARVELOUS experience with a team who was VERY concerned about my long-term health...not just getting my kidney.

[ryderp]

nicholle,

I'm so sorry to hear that your health has declined since donation. I'm a fairly new donor, having donated on Jan. 9th, 2012 to my father-in-law, but I could not have been happier with the care I received or my recovery. I was back to work in 3 weeks, but realistically could have returned in 2. I was out of the hospital in 2 days, and my FIL was out in 5. He is doing wonderfully (71 years old) and I have honestly never felt healthier - I'm 47. My transplant was done at Pitt County Memorial Hospital in North Carolina, and their staff and my surgeon treated me like royalty.

I fully understand my health condition may change/deteriorate due to having only one kidney - and I spent months considering the surgery, even after I had done exhaustive research. I was luckily a perfect match and I was very healthy - but ultimately, for me it became a faith-based decision, not a health-based one. After soul-searching, I was at peace with whatever the outcome was. I am blessed that the outcome was as positive as it has been - thanks to the qualified surgeons and to God.

It is truly my hope that as living donation becomes more prevalent, care for donors improves - before, during and after the procedure. And that there is adequate emotional support as well. I hope my situation isn't the oddity - donation was the most amazing, rewarding experience of my life.

Pat

[Frogit18]

Im sorry you feel that way I donated on the 17/5/12 to my partner I knew most of the risks and have found some new ones but I wanted him around to share my life. In the end its a personal thing in Australia our waiting lists are very long and not open to anyone who just wants to donate.

[livingdonor101]

Re: fatigue

Some living kidney donors have been working diligently to educate the public about the risks of living donation, and improve living donor care in their country. Here's a link to a video and transcript (in English) to a tv broadcast about fatigue in living kidney donors:

http://livingdonorsarepeopletoo.com/living-kidney-donor-chronic-fatigue-broadcast-in-germany/

[waybe]

I am sorry for your post donation problems.  I also admire you for posting online.  I have an article on my blog www.baffledbabyboomer.blogspot.com, describing my experience, but your article encourages me to add a few points about my experience (right lobe liver donation.)  First off, I  am not against live organ donation because it is a personal choice.  However, I agree that certain facts and the way the donor is treated afterwards, must change.  Right now it is run simply as a business.  When you are told that your mother has less than a year to live (and having more illness and pain each day) and that she will never qualify for a deceased donor organ, the question put to you (indirectly, but quite clearly) is, Do you want to watch your mother die after experiencing excruciating pain, or do you want to take a chance and be an organ donor?  In 2002 when I donated, there was plenty of evidence that there are ill effects due to donating.  I have since read about them.   But I was not ready to do the research by myself and change my mind.  I am surprised that all the surgeons, doctors, transplant team were not "Up to speed" with this knowledge or simply chose not to discuss it.   As I mentioned in my other article, if it is as safe as all the medical team explain, why aren't any of the transplant team, doctors,  etc. donating one of their kidneys?   Ever notice how quiet a surgeon/doctor becomes when it is their time for elective surgery?   You do save lives and I give you all the credit in the world, but if you were really heroes, then step up to the plate --  you have two kidneys, two liver lobes, and 4 weeks later  you all claim that everything a donor could do before will be able to do again.   I want to hear from the surgeons who donated to a complete stranger because they really wanted to safe a life and were positive there would be no negative repercussions to themselves.  .  My article explains a little more.   Be well donors -- You did step up to the plate and are heroes.

[waybe]

I wanted to add one thing:  It is very important that you get a 3rd party to evaluate your health.   Before I donated my right liver lobe, I asked the surgeons if the fact that I only had one functioning kidney (due to reflux) if it was still okay to donate.   They looked at me as if I had grown a third eye and simply replied, "We spoke to that surgeon (also practiced at Columbia Pres.) and he assured us it is no problem.   I'm paraphrasing of course.   But now that I am having kidney problems, I wonder if they even talked to my original surgeon.   I was told by a third party last year, that no respectable donor team would consider taking a liver lobe, if donor only had one functioning kidney.  I was also told that the reason I had two followup surgeries within the next 8 months was because my fascia got infected during the donor operation.  I will never know the truth, but I hope that responsible surgeons will at least consider such outcomes before they operate on future donors.    Again, God bless all donors, donor recipients, and the really good surgeons who do consider all health factors before they decide to operate or not.

[sloaner1982]

I often say, " Wish I could turn back time. "  I relate.

[kdub]

I just completed my donation on July 9th.  I'm recovering well, and still very glad I did this for my brother.  But, the way organ donation is run (at least at Stanford where I donated) is awful.  Like other people have said, the people at the donation center make it out to be "no big deal".  When I questioned if my blood pressure was in the correct range, one nephrologist told me, "We will do the donation, not matter how high your blood pressure is, if you're really motivated to help your loved one".  That kind of crap left a bad taste in my mouth. 

But, so far, I would do it again, even knowing what I know now (we'll see what I'm saying in 20 years though!).

One thing I would do differently though... I would have gotten a 2nd opinion!  If I would have come across this website a few weeks earlier (where I've read several times that you should get a 2nd opinion) I would definitely have done it!

Agh, one other thing!  Please, if you're reading this, and are even THINKING about donating ANYTHING, go get life insurance before even talking to anyone at the donation center!  Otherwise, you are out of luck.   

[srj]

hi guys. I'm new to this site. I live in UK and am an altruistic living kidney donor. I donated 2 years ago.....all I know is that it went to a 5yr old boy... I now volunteer with a new UK based charity called "Give A Kidney - One's Enough". Our aim to raise awareness of altruistic non-directed LKD.... It's going pretty good at present and we've had a lot of potential donations this year...

However, I'm concerned about the "Matchingdonors.com" site. They have come to the UK and after reading threads, blogs and various other stuff written by kidney patients waiting for an organ in th USA. I feel worried that it's a form of coersion and I hoped that maybe some of you have views and or experience of this site? All opinions are very welcome. Sue

[sloaner1982]

Thank you for sharing your post. Many times I feel all alone in voicing that ANYONE considering living donation PLEASE PLEASE PLEASE do lots and lots of research about it BEFORE deciding to go forward. Were any of you told that after donation that you may be left with adrenal impairment? Were you told that your kidney function decreases with age? Were you told that most kidney recipients will need two or even three transplants in their lifetime. Did you realize that a donated kidney most times is lucky to make it 5-10 years? Yet, once you have donated, you have a life sentence to possible health problems because you donated. These are just a few of the things that I was NEVER told. I will make this short and say that I have already told my family that if I ever am in need of a transplant- I will NOT USE a living donor. If that means my life is cut short because of that decision, then that is the way it is.

[kdub]

sloaner,  I know that my wife feels exactly the same way that you do, and I think this is a totally valid opinion.  Thanks for speaking up, and expressing your feelings!

[Fr Pat]

Dear Sloaner,
     Hi. You said in your posting that the donated kidney is "most times lucky to make it 5-10 years". I don't have any recent studies to cite, but in the past I have read that a kidney from a deceased donor lastes, on average, about 10 years, while one from a living donor lasts, on average, about 20 years. Of course "on average" includes those kidneys that are rejected or fail shortly after donation as well as those lasting longer than 20 years. At the recent "Transplant Games" there was a group called the "Quater Century Club" all of whom have had their donated kidney for more than 25 years. Could you share the source of the "5-10 years" data you spoke of? It would be helpful to have input from all studies. Thanks.
  Fr. Pat