Monday, July 13, 2009

Ask The Kidney Donor

I’ve been answering a lot of email questions lately from prospective kidney donors trying to decide whether to go forward with the procedure. The same questions always seem to crop up. Here they are:

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-- I’m thinking of donating a kidney and my friends and family are freaking out! What should I tell them?

I'm happy to answer any questions, but I don't want you to think I'm talking you into donating. It is a very personal issue, and you should make it based upon the facts of your life.

My friend Virginia Postrel wrote a great article called:

"Here's Looking at You, Kidney: How and why I became an organ donor -- and how I kept people from talking me out of it."

http://www.dynamist.com/articles-speeches/opeds/kidney.html

Her article started me thinking about donating, and her patience with my many dumb questions helped me during my own discernment process.

Most family members' objections boil down to:

1. Fear of the surgery
2. Fear of living with one kidney

Remind your friends and family of the following things:

The donation of a kidney is laparoscopic surgery, meaning small incision and quicker recovery. Most donors are out of the hospital on the next day, back at work in two weeks, and back to normal in a month. The surgery is no more dangerous than any procedure done under general anesthesia. The anesthesia is the real risk factor. Check out your doctor and transplant center. Get comfortable with both. Ask a lot of questions.

There is no scientific evidence in 50 years of living kidney donations that there are any ill effects to living with one kidney. Within five weeks of donation, the remaining kidney swells in size and increases its filtering power (the "glomerular filtration rate") to match the power of two kidneys. In short, you'll have a single super-kidney instead of two simply adequate kidneys.

When kidney disease occurs, it nearly always strikes both kidneys at the same time. It's not like one kidney fails and you find yourself knocking on wood, thankful that you've got a spare. If I should develop kidney disease, I will need treatment or a transplant – just like I'd need if I had two kidneys. If a kidney donor needs a transplant, they go straight to the front of the line on the kidney transplant list, which seems like a very fair deal to me.


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--- What about saving your kidney in case one of your kids needs it someday?

This is the best argument I've heard against donating. That said, I couldn't justify not saving a life today because it might inhibit my ability to possibly save one in the future. My wife has a spare kidney for them, and we both have loving families who may be willing to help if one of my kids is in need of a kidney. Moreover, neither my family nor my wife's has any history of kidney disease, obesity, or diabetes.

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--- What if something happens to your remaining kidney and you end up needing your second one?

Again, my family has no history of kidney disease. When kidney disease occurs, it nearly always strikes both kidneys at the same time. It's not like one kidney fails and you find yourself knocking on wood, thankful that you've got a spare. If I should develop kidney disease, I will need treatment or a transplant – just like I'd need if I had two kidneys. If a kidney donor needs a transplant, they go straight to the front of the line on the kidney transplant list, which seems like a very fair deal to me.

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-- What if the transplant fails? It will have been a waste!

It happens. Then you will probably feel a real sadness but no regret about your ultimate decision. All you can do is all you can do. The rest is up to the doctors, God, and your recipient's body. Blood donors don't expect accountability and ultimate success regarding the ultimate success of their donations. Kidney donors shouldn't expect it either.

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-- Have you had any residual pain or a feeling as if something is "missing?"

Nope, not even a little. In fact, if this were a science-fiction thriller where I was "missing" the memory of the 6 months following surgery, I would not have known it happened at all. Except for some small scars on my abdomen (see below).

The recovery process works in stages where there is some abdominal swelling (only you and your pants will notice) and the incision points will be tender for maybe six weeks after the surgery, but nothing permanent.

I found myself rather sleepy at night for six months following the surgery (like 9:30 p.m., rather than 11:00 p.m.). I think I was still healing internally. I think that evolved into a habit where I now go to bed earlier than I once did. I don't think this is kidney-related as much as I just became accustomed to being well-rested and getting an appropriate amount of sleep. I only mention it because I have spoken to many others who found themselves rather sleepy at night long after the pain of the surgery had gone away.


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-- Have you had to make any significant changes in your diet and/or exercise routines?

Not really. No more knife fighting for me. I used to be an amateur boxer, but I gave that up long before my surgery. Had I continued boxing through the time of my surgery, it would have been wise for me to stop since repeated blunt trauma to the one remaining kidney could evolve into a melancholy situation.

There are some drugs synthesized in the kidneys, such as ibuprofen, that you may want to avoid as to not over-task your remaining kidney. Tylenol is fine. I still take ibuprofen once in a while because it works better.

I've been a strict vegetarian for nearly 20 years. In theory, I guess it would be unwise for me to start gorging on buttsteaks, become obese, and contract Type 2 Diabetes. But that would be a dumb idea anyway... A kidney donation should not affect your diet.

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-- Will I have to give up drinking alcohol?

There are a million reasons to quit drinking, but a kidney donation is not one of them. Feel free to drink all you please. The liver takes the beating from your boozing, not the kidney.



-- How have your scars healed?

There are three scars. The two right beneath my left ribcage look like healed bullet holes which accentuates my gangsta image. The three inch scar along the elastic-line of my boxer shorts is generally hidden from the public. None of them are particularly unsightly. They are pinker than my skin, but I did absolutely nothing to treat them or care for them. Now that I live in Hawaii, they're probably getting too much sun.

This may call for some airbrushing when you appear in a 2010 swimsuit calendar, but I'm certain you won't be alone.



-- Have you seen any changes in your overall health?

None whatsoever. My blood-work continues to be far within the normal range, and I feel like a million bucks. Again, I want to stress, there is absolutely no difference in my health or my life before and after (pending recovery) the procedure.



-- What have you learned?

From a public policy perspective, I think “altruistic” donors should consider starting a kidney chain where they could save a dozen lives with their kidney, rather than just one. Here’s a great article describing how it works:

http://www.theatlantic.com/doc/200907u/kidney-donation

These were less common a few years ago when I set out to give away a kidney, and I’m overjoyed to have helped my recipient, Brenda. But for people who have no recipient in mind, kidney chain donations clearly do the most good for the most people.

39 comments:

P.J. said...

Thank you for taking the time to post this blog. I donated my kidney last month and was getting worried about my abdomen swelling by the end of the day. You answered my concerns. Otherwise, I feel great!

jimbo said...

I am going thru the process of donating a kidney. I have been confirmed as a match and just need to pass the examinations. I go next week for two days of testing at Mayo in Minnesota. I'm a little nervous but excited. I am donating to a friend of the family. People say "he must be a really good friend" no just a friend that needs a kidney and I have two. How can you give up a kidney? I said "I'll still have two kidneys one in me and one in Mark" ha..your info is very helpful. thanks

Sylvia Garza said...

I enjoyed reading your blog on kidney donation. I donated my kidney to my mom 7 years ago. I would not have done anything differently and my mom is living a normal life and going strong at 63 and loving life. The surgery took place on my 35th birthday. I encourage everyone to be a donor.

Anonymous said...

I too enjoyed your blog. I am the candidate for donating to my best friend's dad, who is 65 years old. I am struggling with friends and family whose reaction has been very negative. They say he's lead a good long life and I shouldn't do it. I really want to do it, but these "friends" have me really feeling down and doubtful, which I know I shouldn't!

KidneyDonor said...

There are valid reasons not to give a kidney, but it doesn't sound like your friends are discussing those issues. Whatever you decide to do, make sure it's for the right reasons. Don't ever make big decisions based on false information and biases of others. Talk to the experts and follow your conscience. Good luck!

Sean said...

I donated a kidney on December 29, 2009 to an acquaintance and casual friend dying of a congenital kidney disease. The decision was easy for me but hard on my family and friends who thought and still think, I am putting myself at great risk.

There appears to be many misconceptions and myths about donation relative to post donation risk and life/diet adjustment. I understand that some adjustment might be necessary but from everything that I can glean nothing dramatic enough to adversely affect one's lifestyle.

Anything that can be done to dispell these fears and to present actually examples of success and/or issues, has to help both the donor and the public at large.

Your blog is most helpful and reassuring.

Sean

Anonymous said...

Hello,

Thanks for the info, Tom. I donated a kidney to my brother on 4 May 2007. It was the most wonderful feeling I have ever felt when my brother called my hospital room from his hospital room to tell me he's "peeing like a race horse!" It was music to my ears and a heavensent decision.

I am proud to be a kidney donor. I, too, have no problems whatsoever. My brother is doing very well, and I thank God always for the health of both my brother and me.

Please consider donating if you have an opportunity. You won't experience a more selfless, humbling, and joyous thing in your life. I sure haven't. God bless.

Detroit Donor

Anonymous said...

I just got a tentative date, June 8th 2010!! I am excited, and worried, only about what dress to wear to a wedding a month later!! LOL! Apparently it won't be the form fitting one I had in mind. Ah well!

I'm also plotting a tattoo..."I gave at the office" in tiny print above the incision. I can't be done laprascopially...so it'll be a bit bigger...more room to write! Karin

Cha said...

I am in the need of a kidney and my mother steped forward before I even got the words out of my mouth that I was in kidney failure. It has been one huge rollercoaster as soon as we get close to setting the date the dr or the insurance want one more test. Well we got a date of May 26 2010 and then the nurse called my mom to say the CT scan came back and her kidneys are two different sizes. We will be going baack to the hospital on Wed. to see if they can function on there own. Has anyone ever come across this or know what the odds are?

KidneyDonor said...

Consider re-printing your question on livingdonorsonline website. They get a ton of traffic and are very knowlegable about kidney issues.

Anonymous said...

I'm donating June 22nd to my husband. Thanks for the reassuring words!

Betty Shelton said...

Cha,
I became an anonymous donor in July of this year and my kidneys were two different sizes. Not dramatically different but some. I kept the bigger of the two (haha). It was actually a decision of the surgeon as my left kidney had an additional blood vessel feeding it so they opted to take the right one and had to do so with an open procedure as opposed to a lap. It has been eight weeks, I just seen my surgeon for a follow up and he is not pleased with me as I have been rushing my recovery a bit. I still have a "bluge" or swelling and it gets warm if I do to much physically during the day. I am trying to slow down a bit and allow my body to heal. It is difficult because on the outside you appear healed, the inside is another matter. Best wishes.

Alfredo said...

I donated my kidney to my sister in mid august, I feel fine aside from some uncomfortable mid to lower back pain. I feel it more when i'm tired or stressed. My sister is doing great so i'm happy about that.

Anonymous said...

Hi, I got news Jan 2010 my 14 year old daughter was in chronic kidney failure, kidneys working only 14%. So I was first one tested and i was a perfect match!! Went through testing to make sure I was healthy enough to donate and thank god I was! My daughter never had to receive dialysis, and we had our surgeries on April 30th 2010.. (my 33rd b-day) a day I don't remember, but a day I will never forget. I stayed in hospital for 4 days and she stayed in for 8 days. Honestly I can't say I feel any different with just one kidney, I do feel blessed I could give her life again!! We are both doing great!! Never second guessed my decision, best thing I could have ever done for her!!!! I hope this can encourage others to give the gift of life.

roxanne said...

ROXANNE:
I have just celebrated the first anniversary of donating a kidney to my partner. The experiences I have read in this blog, were exactly mine. I donated the kidney and in two weeks I was well enough to go back to work.
My partner was back on the road driving after a month and he was 73 at the time. I must say a very hearty 73.
There was only one experience which topped that feeling of giving life back to someone who was losing it - the birth of my two children.. (b)

Anonymous said...

I donated a kidney to my mother over 5 years ago, and it's by far the best thing I've ever did to help someone. She is doing great, and I would not only recommend it to any healthy individual, I would encourage it for anyone that would like to do something to make a difference. Whether it's family, or a stranger, the act of givig someone life is a joy that cannot be described in words. As far as myself, I feel great and have not had any negative effects from the donation, except for an occasional mild pain in my right side. That just helps me to remember that I saved a life. I can't help but smile every time it happens.

Kathy said...

Thank you so much for this. I donated a kidney three weeks ago and the comments hare have completely put my mind at rest over several little niggles that I had

Samantha said...

Thank you for posting such a clear and informative piece about the procedure. You have put all of our minds at rest here as we wait for two of our friends on the waiting list. This is very real and very scary and only through people willing to donate their organs (organ donation) can we truly help each other.

My friend, David Foox, is an artist and he has created a series of toys that raise money (all proceeds go to organ donation charities such as gift of life michigan and donate for life NY). the toys are called ORGAN DONORS
http://www.foox-u.com/vinyl/organ-donors-by-foox.html

xlpharmacy said...

You must be in good health and less than 70 years old to be able to donate a kidney. You also must pass physical and psychological tests. Remember that it is illegal here in the U.S. to receive payment for donating a kidney.

Anonymous said...

The bit claiming that alcohol can't have detrimental effects on the kidneys is a certifiable falsehood.

Anonymous said...

I'm scheduled to donate a kidney one week from tomorrow. It has been a long series of tests, so it is very exciting that it's almost reached the end I've been working toward. I am not at all scared or questioning my decision; hopefully I will feel the same way a month from today. It is an anonymous donation--I may or may not find out who received my kidney. Strange, but okay.

Anonymous said...

Thank you so much for this blog. I am about to begin testing to see if I am eligible to become a donor for a very good friend and co-worker. You answered all of my questions and squelched all of my fears. Again Thank you.

Anonymous said...

I am a perfect match for my sister and getting my tests done on Friday. I was pretty stressed about the tests but reading this article and the testimonials made me laugh and feel at ease. I sure hope all the tests go well. I want nothing more than my sisters life to go back to some form of normalcy. If you read this send a prayer up for us!

Veronica Baca said...

My 34 year brother is on the kidney transplant donor list. He is diabetic and has been on dialysis for about two years. He is from Brownsville Texas and basically we are waiting for McAllen transplant center to call and say we have a donor but so far no calls. I'm really thinking of donating by kidney but recently a 32 year teacher just died from donating her kidney to her mom. I'm the healthiest family member and workout everyday. Does anyone have a few words of encouragement or other options for my brother?

God bless to all and thx

Vero

Anonymous said...

I'm a fairly new kidney donor; surgery took place 5 weeks ago. I found this blog so very helpful. Wish I would have found it a long time ago.

Marci B said...

hEY THERE, i JUST DISCOVERED YOUR POST. i TOO AM A KIDNEY DONOR. i DONATED IN 2006. i HAVE SEARCH THE INTERNET EVERYWHERE WITH POST SURGERY QUESTION AND i COME UP WITH NOTHING. sO MAYBE YOU NKOW, i HAD BEEN PUT ON 100 LBS SINCE MY SURGERY. I NOTICED THE WEIGHT INCREASE ABOUT 4 MONTHS AFTER THE DONATION.I DO NOT EAT ANY DIFFERENT, MY EXERCISE ROUTINE IS THE SAME(BASIC) AND THE ONLY DIFFERENT IS IM GETTING OLDER. I IN MY HEART OF HEARTS KNOW SOMETHING IS DIFFERENT. BUT MY DOCS KEEP SAYING IT'S NOT THE EFFECTS OF THE KIDNEY DONATION. HAVE YOU EVER HEARD OF THIS? WHEN i LOOK IT UP ON THE COMPUTER i HAVE MOST OF THE SYMPTOMS FOR METABOLIC SYNDROME.. NOW HAVING MEDICAL TRAINING I KNOW THE KIDNEYS OR MY ONE KIDNEY.LOL , CAN EFFECT THAT..SO THIS IS WHERE I AM GETTING MY IDEAS FROM

Tiffany said...

Thank you for creating this blog. I am donating my kidney to my co-worker and this answered so many of my questions. I feel less alone knowing there are others out there than are willing to do this too and completely understand the reason why.

Radley West said...

The risk of death by donation are extremely low. I donated one week ago today and it was the easiest decision I ever made. Less than 24 hours after the transplant the recipient was already able to pee. The decision to donate can be a big one but I put the entire process from initial testing to procedure to recovery in God's hands.

Gabriel Karaziwan said...

Hi,

I live in Montreal, Canada, 28 years old. My brother, 30 years old needs a kidney and has been on dialysis for a year and a half now.

When the nurse told me I couldn't give my kidney directly to my brother, it took me about 9 months to put up my name for the paired exchange program. During this 9 months, the list to try find the maximum matched pairs has turned on 3 times.
My name wasn't on the list back then.


The main reason of this 9 months delay are the false rumours going on concerning kidney donation. My mom and brother have been very protective concerning me to donate. They were scared and misinformed and were not giving the truth information. I still can't believe I have delayed it for 9 months based on scare and disinformation.

Today I am still waiting to find a match for my brother to receive and me to give. When it comes up, I think this day will be the happiest of my life.

Taking to doctors, reading on the internet, and very specially, talking and meeting with people who have donated helped me understand the truth and be more informed.

I encourage everyone to talk to a person who has donated a kidney. You will then feel a true and profound joy that a person could have. You will see someone happy. You will see what a true citizen is. You will see someone who will be permanently animated by a love to life, no matter what happens for him/her in the future.

Gabriel Karaziwan
gbk@live.ca

GBK said...

Hi,

I live in Montreal, Canada, 28 years old. My brother, 30 years old needs a kidney and has been on dialysis for a year and a half now.

When the nurse told me I couldn't give my kidney directly to my brother, it took me about 9 months to put up my name for the paired exchange program. During this 9 months, the list to try find the maximum matched pairs has turned on 3 times.
My name wasn't on the list back then.


The main reason of this 9 months delay are the false rumours going on concerning kidney donation. My mom and brother have been very protective concerning me to donate. They were scared and misinformed and were not giving the truth information. I still can't believe I have delayed it for 9 months based on scare and disinformation.

Today I am still waiting to find a match for my brother to receive and me to give. When it comes up, I think this day will be the happiest of my life.

Taking to doctors, reading on the internet, and very specially, talking and meeting with people who have donated helped me understand the truth and be more informed.

I encourage everyone to talk to a person who has donated a kidney. You will then feel a true and profound joy that a person could have. You will see someone happy. You will see what a true citizen is. You will see someone who will be permanently animated by a love to life, no matter what happens for him/her in the future.

Gabriel Karaziwan
gbk@live.ca

GBK said...

Hi,

I live in Montreal, Canada, 28 years old. My brother, 30 years old needs a kidney and has been on dialysis for a year and a half now.

When the nurse told me I couldn't give my kidney directly to my brother, it took me about 9 months to put up my name for the paired exchange program. During this 9 months, the list to try find the maximum matched pairs has turned on 3 times.
My name wasn't on the list back then.


The main reason of this 9 months delay are the false rumours going on concerning kidney donation. My mom and brother have been very protective concerning me to donate. They were scared and misinformed and were not giving the truth information. I still can't believe I have delayed it for 9 months based on scare and disinformation.

Today I am still waiting to find a match for my brother to receive and me to give. When it comes up, I think this day will be the happiest of my life.

Taking to doctors, reading on the internet, and very specially, talking and meeting with people who have donated helped me understand the truth and be more informed.

I encourage everyone to talk to a person who has donated a kidney. You will then feel a true and profound joy that a person could have. You will see someone happy. You will see what a true citizen is. You will see someone who will be permanently animated by a love to life, no matter what happens for him/her in the future.

Gabriel Karaziwan
gbk@live.ca

Jackie Lettieri said...

Your story is amazing. I just found out my mother needs a kidney. I would love to donate my kidney to her but don't know where to start. Any feedback you can give me would be greatly appreciated.

Anonymous said...

Hi I just donated to my mother a few weeks ago and while I think it was the best decision and I have no regrets, I do think you are oversimplifying it. Fist of all most people are in the hospital much longer than a day. I was in for 4 days. Also you do not go to the top of the transplant list, that is a myth.

Anonymous said...

You do go to the top of the list because it happened to me.

PJ said...

My friend/recipient and I are grateful for our transplant opportunity. Both of us healed quickly, and the kidney never missed any output opportunity...it was working as soon as it was reconnected! I too felt a little more tired even after external healing, but it's no big deal.

Both of us are enthusiastic about encouraging others to consider a live donation. As several others have mentioned, the results are in God's hands...as is my every breath! I'm grateful!

Anonymous said...

Almost everything written in this blog is an oversimplification or falsehood. Talk to your doctor because there's an unfortunate amount of misinformation on the web.

Tiffany said...

Gorgeous!

livingdonor101 said...

"There is no scientific evidence in 50 years of living kidney donations that there are any ill effects to living with one kidney."

There's no evidence there *aren't* any ill effects either because the transplant industry has never bothered to collect data on living donors' health and well-being.

The first living kidney donor transplant occurred in 1954, but no one gathered any identifying information on living donors (aka a social security number) until 1993, leaving 40 years of U.S. living donors completely unknown and untrackable. Post-1993, they instituted no quality controls so that when OPTN's ad-hoc living donor committee examined the database years later, they found it to be grossly unreliable (eg. some SSN's actually belonged to the recipient not the donor). In 2000, the Secretary of Health mandated one year of follow-up on all U.S. living donors, but more than a decade later, 35% were 'lost' by one year - that means that no one knew if more than 1/3 of living kidney donors were alive or dead one year post-donation.

I realize much of this is unbelievable so here are links with confirming references (Per OPTN and ACOT):

http://www.livingdonor101.com/livingdonorregistry.shtml

http://livingdonorsarepeopletoo.com/the-latest-on-living-donor-follow-up-hint-its-still-really-really-bad/


"Within five weeks of donation, the remaining kidney swells in size and increases its filtering power (the "glomerular filtration rate") to match the power of two kidneys. In short, you'll have a single super-kidney instead of two simply adequate kidneys."

This is also misleading and untrue. A living kidney donor loses 50% of his/her nephrons, never to be regained. Their post-donation kidney function will *never* equal the GFR pre-donation.

The increased blood pressure in the remaining kidney causes the kidney's cells to hypertrophy (or swell), the blood vessels to widen and the plasma pressure to increase. This is known as hyperfiltration and glomeruler hypertension. These conditions make the kidney much more vulnerable to damage, disease and toxins. Over time, this increased work load and pressure can cause the glomerules to leak protein and become less efficient.

http://www.livingdonor101.com/kidneys.shtml


As someone else mentioned, kidney donors in need of a transplant DO NOT go 'to the front of the line'. They are given 4 points of regional priority, which amounts to approximately 1 year of wait time.

Since 1993, 300+ living kidney donors have been wait listed in need of their own kidney transplant. This number grew 13% in a single year.

http://livingdonorsarepeopletoo.com/living-kidney-donors-wait-listed-for-kidney-transplants-keeps-growing/

I'm glad your health has so far been maintained, but other living kidney donors are not so fortunate. It's important not to cloud the issue with misinformation.

rohit gokul said...

Hello mate,
That blog was absolutely brilliant! I am a donor to my mum. Did this about 3 years back. I have got into a something sort of a weekend binge, on most weekends. I am talking about 6-7 pints of beer. What do you think are the possibilities of this affecting my creatinine? I am perfectly healthy and i feel like a million bucks! I would appreciate your input!
Cheers,
Ro