The Journey of a Living Kidney Donor
*** TRANSPLANT DATE: December 7th, 2007, Irvine, California ***
My cousin needs a kidney and I am her living kidney donor. She was born with Polycystic Kidneys (PKD), a hereditary kidney disease that her father died from. He passed the disease on to two of the three kids. And now, she needs a kidney transplant. I am my cousin's treatment and cure. Think about it, how cool is that?
By sharing my experience as a living kidney donor, I hope to get more people to sign organ donor cards as well as considering being a living donor.
You can help, too, by forwarding this site, wearing organ donor apparel, signing your organ donor card, and supporting those living organ donors you know. Who knows maybe after going through my journey with me, you'll even considering becoming a living donor for organ transplant, too! I wear a green "Donate Life" organ donor bracelet for my cousin and hope you will, too.
This lens is a constant work in progress as I want to provide you with as much information as possible about organ donation and transplantation. You'll find lots of information as well as resource links, polls and videos on being an organ donor, living donor, as well as living with one kidney.
Lastly, as someone accustomed to being sick, I know the importance of humor, stress relief and inspiration, which is why I've included some information on them. These were the things that kept me going when I was sick for so many years. Hopefully, you will find them useful in your own life or supporting that special someone in your life that's ill.
Be sure to check back for our KIDNEY TRANSPLANT UPDATES, located after "Why AM I Donating My Kidney". I'll keep you updated on all new developments there.
Thanks for stopping!
Submit me for LENS OF THE DAY / How It All Began / Why Am I Donating My Kidney? / Meet Others / My Transplant Updates / Kidney Humor / Get Your Organ Donor Card HERE / Testing To Be A Living Donor / How Do I Become A Living Donor? / FAQ's / Online Resources for Organ Donations / Shortening The Organ Donor Waiting List / Other Ways You Can Help / In The News / POLLS / Magic Kidney Beans / Support a Cure For Polycystic Kidneys / Organ Donor Products / Great Organ Donation Books / Inspiration / Dealing With Depression When You're Ill / Stress Reduction for Serious Illness / Pamper Yourself / Organ Donation Gifts / VIDEO: Living Donor Information / VIDEO: Living With One Kidney / VIDEO: Kidney Transplant Surgery / Reader Feedback / Transplant Photos (Check out the goat...) / Like This Lens?
Submit Me For "Lens of the Day"
As per the Lens of the Day lens,
"Every weekday, the Squidoo staff selects a lens that stands out from the crowd, a lens that is unique in topic, approach or personality."
If you feel this describes my lens, please submit my site for LENS OF THe DAY. I also ask (BEG) you to ask your friends and other squid members to do the same.
SUBMIT ME for Lens of the Day (lotd@squidoo.com)
How It All Began
In April, my cousin was put on the transplant list and I began testing to see if I could be her donor the following month. If you want to know what tests I had to go through, keep reading. I figure if I share EVERYTHING, maybe a few more people will consider saving a life, too.I am EXCITED to say I was "Donor Approved" just a few weeks ago! What a thrill that was! And I was the first and only person to be tested as her donor, which has given her options on when to have the surgery.
We have flexibility in the transplant date because her kidney function is a little less than 20%. Dialysis starts at 12% and recipients recover from surgery better if the transplant is done prior to dialysis.
I was hoping to get a transplant date on 8/14/07 but no such luck. I hadn't considered that her doctor would need to run tests to find out where her kidney function is. So, we wait. But, we expect the transplant to take place sometime this year.
I can't wait for her to have her life back!
WHY AM I DONATING MY KIDNEY?
For me, the answer was simple - Because she needs it.
Whatever choices I make in life and whatever I do is based on a very simply philosophy. If I don't do it, would I regret it later in life? I don't want to look back at the end of my life and shoulda/woulda/coulda myself to death! I want to look back with a HUGE GRIN and say "yeah, it was difficult, but can you believe I did THAT"?I don't regret any of the choices I've made in life. Some were more difficult than others. The decision to donate my kidney was probably one of the easiest, believe it or not.
I knew that we're born with two kidneys but most people really only need one. The procedure is done lathroscopically (3 small incisions) and I can be back at work in two weeks (my job is not labor intensive).
I also asked myself "Could I live with myself if my day came and I had a spare kidney?". And I knew I couldn't.
Now, I also have an advantage in that I've had 5 surgeries (4 fairly major). I know what it's like to be sick, I know what hospitals are like, I know what's expected of me after surgery. I think this may give me an advantage over someone who's never had surgery before as I don't fear it.
I feel very blessed to finally be healthy enough to be able to help out someone else.
Meet Others
Waiting For or Giving an Organ
Kidney Humor....
Got Urine?
Just make sure you print out some of the organ donor cards (available here, too) to hand out when people ask you about your shirt.
I'm looking for more "kidney humor" so if you see something you like, let me know so I can add it.
Got Urine?
You'll be ready to stop traffic in this flashy yellow tee! This shirt isn't for the faint of heart. People will be stopping you in the streets telling you what your shirt is asking! Be sure to print out some organ donor cards (available on this website) to hand out when you are questioned on your shirt.
Plain Spoken
Some of us are just really say it like it is. If that's you too, you'll love this plain spoken shirt. The back says "Got Urine". Ask and you shall receive.
Get Your Organ Donor Card HERE!
- Organ Donor Card
- Click here when you are ready to become an organ donor. This site will allow you to download a card as well as register to be a donor in your state.
Testing To Be A Living Donor
It's probably easier to list what they didn't test
The first thing I had to do was complete a very extensive questionnaire. I think it was at least 15 pages long. It asked tons about medical history to vaccination dates. I had to guess on some of the vaccination dates but indicated that on the form. I knew if they had questions about it, they would ask.The next step was blood typing. I had an advantage over the other 4 other people completing questionnaires for my recipient because I was able to provide documentation on my blood type from one of my previous surgeries. She needed O or B and I was O!!!!
I was then scheduled for: complete physical/ medical history, gave blood, urine, had a pap and tb test, and mamogram. I also had to do a 24 hr urine test. This give an accurate picture of how well my kidneys are working.
Once I passed these, it was time for the cross match. I had 7 vials of blood draw that were mixed with the recipients blood to make sure are blood doesn't fight. Hence, you want a negative crossmatch. Ours was NEGATIVE!!!!! What a happy day that was!
Normally the next step would have been for me to fly to Calfornia, where my recipient lives. The tests there would have been: chest xray, ekg, more blood work, pregnancy test, urinalysis, drug test, hepititus, HIV, and STD test. But since we live in different states, I was given the green light to do those in my state.
Now the only testing left to do will be a few days prior to transplant. I'll have to redo the 24 hr urine test and have an abdomin CT scan. The doctors will build a 3d model of my insides so they can plot out the surgery in advance. Makes everything go smoother.
I still have to meet with the Nephrologist, the dietician and social worker, too. I've been told the social worker can begin the process over the phone so I'm waiting for him/her to call me. I know there won't be any problems getting approved there as I have a horribly positive attitude, great sense of humor, am not the primary breadwinner of the family, no kids, my husband will be here to take care of me after surgery and I am self employed so I'm available for surgery whenever my relative schedules it. I just have a really warped sense of humor that I'll have to keep in check! I'll share that in a topic below.
The link below will provides really good information on the entire process as well as one of the best forums/information available online.
www.livingorgandonor.org/details.htm
How Do I Become a Living Donor?
The first place to start is with your family and friends. The majority of donations are among people that know each other.If you don't find someone that way, then check with your local transplant center (you can find this online at www.ustransplant.org. Ask to speak with one of the transplant coordinators and tell them you are interested in being a donor. Tell them you are interested in being a "nondirected" donor and ask if they have a program for this. If they do, ask them how you can participate. If they don't ask for a referral to a center that does have a "nondirected" program.
Another option is to sign up on one of the online living donor registries. These links are located in the link section below.
Lastly, you can post an online message stating you would like to donate. Again, those links are listed below. Be note that some transplant centers may not take donors who meet via the internet.
FAQ's
Living Kidney Donors
Yes, but as long as you are healthy, risks are minimal.
Can you live a normal life with one kidney?
Only one kidney is necessary to provide good health and a normal life. The living kidney donor can expect to live a normal life span and enjoy an excellent quality of life.
Can I still have kids after donation?
Your kidney donation will not prevent you from having a nomral pregancy and childbirth.
How long is recovery after donation?
You should expect to be in the hospital 2-3 days. If your job does not require physical activity, you should be able to return to work in 2 weeks. Those with more physical jobs may take a few weeks longer to recover. After recovery, you will be able to get back to your normal life; however, it will be important to avoid accidents that could damage your kidney. You'll also want to avoid contact sports (boxing, football....).
Who pays for this?
The donor's costs are covered by the recipient's insurance, once you've been approved as a candidate by the transplant center.
"The recipient's insurance will be asked to pay for the donor's pre-transplant work-up, surgery, hospitalization and any complications directly related to organ donation. Usually these costs are covered expenses by the recipient's insurance. If the recipient's private insurance will not cover your costs and if the recipient is eligible for Medicare's End Stage Renal Disease (ESRD) program, the medical bills will be covered by Medicare.
The living donor does not pay for his or her medical expenses. However, the financial impact of wages lost during the post-operative recovery period when he or she may be unable to work, as well as possible costs for travel, lodging, and childcare should be considered. An insurance plan occasionally will allocate funds for the donor's lodging and travel expenses, but none give compensation for lost wages." www.livingdonorsonline.org
Do you have other questions not listed here?
Please email them to me and I'll be glad to add them.
Lastly, please there is a wealth of information in the videos at the end of this lens. From considering living organ donation, to living with one kidney to viewing an actual kidney transplant. Don't miss it!
Shortening the Organ Donor Waiting List
Public awareness is a big factor in why there aren't more living donors.
We can do this by sporting living donor apparel to help educate the public on the tremendous need for organs.
Living Organ Donor Tote Bag
Everyone needs a tote bag, right? Why shouldn't yours promote Living Donors?
Living Organ Donor Teddy Bear
Show your support for your donors and recipients with this adorable bear. Encourge and support your Living Donors!
Living Organ Donor Golf Shirt
Consider being a living donor and support those living donors by sporting this Organ Donor Golf Shirt. Recycle yourself to give another the gift of life.
Living Organ Donor Fitted T-Shirt
Sign your donor card and give the Gift of Life. Be a part of God's Road Side Assistance Team. Each day, about 77 people receive organ transplants. However, 19 people die each day waiting for transplants.
Living Organ Donor Large Mug
Sip your coffee in the morning while promoting Living Organ Donation. It doesn't get much simpler than that, does it? Let's make a difference!
Other Ways You Can Help
Easy Way You Can Make A Difference
"NKF's Legislative Action Center provides the latest information about legislation and policy relating to chronic kidney disease, transplantation and donation. The featured action alerts allow you to easily advocate to your Members of Congress on these issues. We invite you to become an NKF patient advocate by joining our People Like Us E-Advocacy Network. Just complete an action alert below or click below to sign up. We will email you when new action alerts are posted and send you periodic issue updates to keep you informed."
www.http://capwiz.com/kidney/home/
IN THE NEWS
Organ donation in the news
- Wife is perfect match to give husband kidney transplant
- Ed Mertz didn't have to go too far to find someone willing to donate a kidney
- The Ultimate Life - Changing Gift
- Calls for a system of "presumed consent" to be introduced to tackle chronic shortages of organs
- Notice in church bulletin leads to kidney transplant
- A notice in a church bulletin resulted in a kidney donor for Sue Kossman, 54, of Imperial.
- Uniontown kidney patient finds donor in her workplace
- Co-worker donates kidney
- American kidney donor guest of honor at bar mitzvah of boy he saved
- Three years ago Moshiko Sharon received a kidney from an American Jew he'd never met before.
- Fremont man's kidney donation lets son lead normal childhood
- About 31/2 years after Nesbitt donated a kidney to his son Myles, life has returned to normal.
- Man Donates Kidney to Stranger
- Few people would offer a ride to a stranger these days. Fewer still might give one a kidney.
- Making a lifelong connection
- PLEASANTON: Valley View Elementary parent to donate organ to mother with kidney disease
- B.C. live donor program a success
- British Columbia took a leap and decided to start covering the costs associated with live organ donation
- The Kindness of Strangers
- "He typed into Google: I need a kidney"
- Kidney Matchmaking
- A new method of matching patients and donors could make transplants possible for thousands more
- Rethinking Kidney Markets
- Last year, 3,916 Americans died waiting for a kidney transplant. About 70,000 Americans are on the national waiting list for a kidney, and most of them undergo dialysis - a painful, invasive, continuous and time-consuming set of medical procedures that temporarily treat kidney disease. The federal government should address these problems by lifting the ban on kidney sales immediately.
- Scarcity of Minority Organ Donors is Dire
- It often takes twice as long for minorities who need organ transplants to receive them, particularly African-Americans and Hispanics. The two groups constitute the largest percentage of people in need of organ transplants, but they are the least likely to be organ donors.
- Transplant patients must play the waiting game
- Waiting for the transplant
- For Living Donors, Many Risks to Weigh
- But many problems can complicate transplants from live donors. It is important that potential donors know about them and take the time to resolve them before deciding whether to go ahead with a donation, which carries the potential for serious physical and emotional risks.
Magic Kidney Beans
When you don't feel well, it's hard to keep a positive attitude....
My birthday and her soon to be new kidney's birthday is this Thursday. So, her soon to be new kidney (currently known as my left kidney - ha) put together a little care package that she will receive, Thursday, on my birthday.
The card in the package is from my left kidney. It tells her that once the transplant is done she will have two birthdays to celebrate because my left kidney will be 40 on Thursday. So, my left kidney put together an August birthday care package for her.
The care package consisted of an August birthstone bracelet and earring set, a meditation stone and magic kidney beans. The magic kidney beans are actually dried kidney beans sprayed with sparkle spray and a high gloss sealer. In the pouch they are in is a little slip of paper that says "Magic Kidney Beans - For you to hold onto until we meet".
So whether it's a personal touch or books or CD's, it's important to help your donors, recipients and their families get their daily dose of humor. It really does help speed healing.
POLL: RU A Card Carrying Organ Donor?
Please take a moment to answer .... Thanks!
POLL: Would you consider being a LOD?
(LOD - Living Organ Donor)
POLL: Do you know any LOD's?
(LDO - Living Organ Donors - other than me)
Support a Cure for Polycystic Kidneys
Here is some information from PKD Foundation (www.pkdcure.com):
Ten percent of all profits from my sales go to the PKD Foundation.
Jr. Ringer T-Shirt
Our women's ringer tees from Hyp are made of 100% fine cotton jersey.
Fitted T-Shirt
For stylish weekend comfort anytime, guys will want to live in our Fitted T. Made of ultra-fine, combed ring-spun cotton, that gets softer with each washing. Lightweight for summer comfort or winter layering. Grab attention with this vintage fit that loves to hug skin. (Size up for a looser fit).
Large Mug
Super-size your favorite beverage or just size-up to avoid spills with our hefty, 15 oz. ceramic Large Mug. Large easy-grip handle. When you need more, mug it up.
Online Resources for Organ Donation
- The Never Ending Altruistic Donor
- Imagine a way to turn a single act of human kindness into a never-ending cascade of benevolence.
- Organ Donor.gov
- U.S. Government information on Organ & Tissue Donation and Transplantation
- Matching Donors.com
- Matching donors with recipients
- Living Donors Online
- The online community for living donors, potential donors, their families, and the medical community.
- Trans Web
- Information on organ and tissue transplantation and donation including answers to common questions, current research, and personal stories.
- The Transplantation Society
- An international forum for the world-wide advancement of organ transplantation.
- European Society for Organ Transplantation
- European Transplant information.
- Children's Organ Transplant Association
- The Children's Organ Transplant Association helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
- Transplantation.Org
- Organ Transplantation Issues
- Kids Kare
- This web-page was made by kids, for kids so that we could teach them about sharing organs and getting transplants.
- The Center for Organ Recovery & Education
- The Center for Organ Recovery & Education (CORE) is a non-profit organization dedicated to promoting donation, education and research for the purpose of saving and improving the quality of life through organ, tissue and corneal transplantation.
- Eurotrandsplant International Foundation
- The Eurotransplant International Foundation is responsible for the mediation and allocation of organ donation procedures in Austria, Belgium, Croatia, Germany, Luxemburg, the Netherlands and Slovenia.
- Transplant Life
- Here you'll find an instant link to the information you need to be better prepared for each stage of your transplant experience.
- Minority Organ Tissue Transplant Education Program
- The mission of the National Minority Organ and Tissue Transplant Education Program, (MOTTEP®) is to decrease the number and rate of ethnic minority Americans needing organ and tissue transplants.
- Alpha-1 Advocacy
- "Our mission is to improve the health and well being of those affected by Alpha-1
through support to patients, educating healthcare professionals
and advancing public policy for the Alpha-1 Community."
Great Organ Donation Books
No cost to low cost
The United Network for Organ Sharing has a terrific free booklet entitled "What Every Patient Needs to Know." It covers the financial issues for both donors & recipients as well as medicare, medicaid, insurance coverge and social issues. Additonally, you can find information on fund raising campaigns and other possible sources of assistance. Call UNOS toll-free at 888-894-6361 to request a copy.
FREE DOWNLOAD: A Kidney Patient's Guide to Working & Paying for Treatment
If you or someone you love had kidney problems this 108 page pamphlet has a WEALTH of information. It covers everything from the cost of kidney care, to medicare, medigap, and medicaid, disability programs and working while sick. It also provides a wealth of additional resources at the back. It's available on line at no charge. Don't miss it! Life Options Booklet
Organ Donation Doesn't Just Happen
For Donors, Donor Families, Recipients, and Transplant Professionals
If you are the kind of person that needs to see more than just a website for additional living donor information, this is the book for you. Everything you ever wanted to know about living organ donation. Perfect for donors, donor families, recipients and transplant professionals. Get all your questions answered here.
A Gift of Life: A Page From the Life of a Living Organ Donor
by Lynn Chabot-Long
New & used from 12.73
Inspiration
Dealing with Depression When You're Ill
Fighting depression when you are sick is so difficult.
Stress Reduction for Serious Illness
Find something in your life that will allow you at least 30 minutes a day to relax and put life aside so you can recharge. These are some of these way I recharge and believe me, it makes a huge difference.
Pamper Yourself
Organ Donation Gifts
VIDEO: Living Donor Information
Give the Gift of Live
VIDEO: Living With One Kidney
Kidney Donation: Living With One Kidney (Dramatic Health)
In this Medical Minute, Dr. Del Pizzo answers a common question among kidney donors, "Can I live with only one?" Source: An Original HealthTheater.tv Production/In association with the Dept. of Urology, Weill-Cornell New York Presbyterian Hospital. Credits: Executive Producer:Sean Moloney, Editor:Calvin C. CHOI
Runtime: 63
3562 views
15 Comments:
curated content from YouTube
VIDEO: Living Donor Kidney Transplant
Yep, the actual surgery.....
Reader Feedback
-
Reply
- Brenda Brenda Jan 29, 2009 @ 10:35 pm
- Thanks for your site. On February 23 this year my sister and I will celebrate 25 years since she received my kidney in a transplant. We are having a party at the hospital where it all took place. The good news is the kidney is still functioning better than people with two normal kidneys! Praise the Lord! And me...I just have to lean to one side when I go to the bathroom, but other than that, I'm fine!
Thanks again!
-
Reply
- Brenda Brenda Jan 29, 2009 @ 10:35 pm
- Thanks for your site. On February 23 this year my sister and I will celebrate 25 years since she received my kidney in a transplant. We are having a party at the hospital where it all took place. The good news is the kidney is still functioning better than people with two normal kidneys! Praise the Lord! And me...I just have to lean to one side when I go to the bathroom, but other than that, I'm fine!
Thanks again!
-
Reply
- shaymaa shaymaa Sep 21, 2008 @ 4:21 pm
- i have a friend from croatia and her little son needs kidney transplantaion, what should we do???
-
Reply
- onlinehandyman onlinehandyman Mar 29, 2008 @ 12:56 am
- you are an amazing person to donate one of yor
kidneys. Best of luck to you and your cousin.
Scott
vitamin-health
-
Reply
- DoreenMartel DoreenMartel Mar 5, 2008 @ 7:38 pm
- great lens - please consider adding http://www.masslionslazarusfund.org to your link list :)
-
Reply
- krisManuel krisManuel Nov 15, 2007 @ 1:50 pm
- Thank you for sharing. This is such a great lens. 5-stars! If you have time, stop by my lens :)
-kris
-
Reply
- Enchanted_Ways Enchanted_Ways Oct 18, 2007 @ 1:08 am
- Super lens! Wishing you
-
Reply
- GOLDSMITH GOLDSMITH Sep 7, 2007 @ 7:20 am
- Hi awesome lens, I have voted you 5 stars, here is my lens online business visit it once if you like it vote my lens. Thank you...
-
Reply
- DeanBakerWholesale DeanBakerWholesale Sep 6, 2007 @ 7:40 pm
- Great 5 Stars lens! I truly admire you for what you are doing. Great cause!
-
Reply
- Pierce_This_2 Pierce_This_2 Aug 29, 2007 @ 3:13 pm
- You can be very proud of yourself. It is good that you sound grounded, when you are doing something so wonderful. How to measure a belly button ring
- Load More
Transplant Photos
(Humor: check out the goat.... hehe)
I plan on doing a photo documentary of the transplant. I live in Nebraska but the transplant will be done in California. So, these Flickr photos are the best I can do until I can post my surgery photos.
I don't know what's up with the goat photo. I let flickr choose the photos and I think something's gone horribly wrong there....
Like This Lens?
Transplant Updates
Sorry I haven't updated here in a while. I had a HORRIBLE cough for the entire month of September. I was in bed the whole month! Anyway, I'm feeling much better now and have lots to update you on.
First off, we have a transplant date - Friday, December 7th! I'm really excited! What's even more exciting is that my mom will be able to go with me after all.
And, last Sunday, I got my kidney tattoo. I absolutely love it!
9/3/07
I got a call for the tattoo parlor yesterday and went in to make the final adjustments to my kidney tattoo! It's ready to be done as soon as my shoulder heals (had a skin tag removed).
On a sad note, Friday morning, I had to put my beloved 17 year old Yorkie to sleep. She had a long and good life and she let me know it was time. It's been a pretty tough weekend for me without her.
8/22/07
My cousin and are getting kidney tattoos to celebrate our journey. She had to get hers prior to surgery so she got it this past weekend. I'm so jealous!
I love her design much better than mine - the symbolism is AWESOME! The green band around the yin & yang symbolizes the green silicone bracelets for kidney's that say "Donate Life".
I think I'm going with her design but will make some changes because I want mine to look like it's popping out of my skin. I guess this technique is called torn skin or torn flesh. Mine will also go on my forearm. The size of the yin and yang will be about the same but the total size of the tatttoo will be bigger.
I'm shopping for a tattoo artist this weekend and hope to get mine by next week. I'll keep you updated.
8/19/07
I spoke to my cousin for the very first time! I think the last time we spoke was back in the 80's when we were in college. Up til today, all our communication has been through email and text messages. It was great to talk with her.
She needs to get her tattoo prior to surgery due to risk of infection. She wants to get it today and wanted to make sure I was ok with it. Of course I'm ok with it - I'm just a bit jealous!
She's having the artist draw up a yin & yang symbol with multiple kidneys floating in it (from what I understand) and it will have a green bracelet around it. Actually, I think her idea is SO MUCH better than mine. I love the yin yang symbolism. I can't wait to see it. I should have pictures later today so be sure to watch for them!
I'm not a webring person. That said, I wanted to you to have access to other people dealing with Kidney Disease and Organ Donation.

Fetching new data from eBay now... please stand by






















