Thank you for taking the time to click through and consider or even just learn more about kidney donation. It means a lot to me that you are even checking out this page. It’s a weird, awkward thing to be in a life-threatening situation where you have to ask others to donate a kidney to help you live. There is not really an “etiquette” guide available to tell me how to do this. My goal is to make you feel more comfortable about the idea of living donor kidney donation and offer information so you can make an informed decision. No one should feel obligated to give me a kidney. It is not a decision I can make for you and I fully support you in whatever your decision may be. I am a strong believer in bodily autonomy so there is no way that I can judge whether living kidney donation is right for you. If you decide to pursue living donation, either for me or someone else, it is something I want you to feel good about and called to do. If you decide this is not for you, it’s ok. Don’t feel guilty about it or think I would think less of you. I’ve gathered some information and resources together for you that I hope will be useful.
What about dialysis, and Why a living donor?
Have you asked your close family and friends?
Who is eligible to become a living donor?
Do living donors have to be local?
What exactly would a living donor have to do?
I’m already interested, what do I do next?
Where can I learn more about becoming a living donor?
I cannot be a living donor, are there other ways I could help?
Who am I?
My name is Lisa Ferris and I live in the Portland, Oregon metro area. I am 51 years old, married and have 3 children. I have a set of twins who are 16 and an 11-year old boy. I grew up in Council Bluffs, Iowa and Omaha, Nebraska. I graduated from the University of Nebraska with a BS in Education and got a Master’s in Education from the University of Kansas. I worked in academia for several years as a research associate on several grants that advocated for the civil rights of individuals with disabilities. For 27 years, I worked part-time as a personal care attendant for disabled folks, until I got too sick to do the physical work. In 2014, my husband and I started our own assistive tech company that helps folks with disabilities utilize technology to gain employment. My husband and I enjoy traveling with my family and guide dog, gardening, ice skating and swimming.
Why Do I Need a Kidney?
The Medical Reason: I was born with two genetic conditions. One is called Retinitis Pigmentosa and affects my vision. I have some vision, but I can’t drive, and I do use a guide dog and read braille. The other is a rare genetic disease called Alport’s Syndrome that affects my hearing and kidney function. I use hearing aids and have been very slowly losing kidney function since I was about 2 years old. I have finally come to the point where my kidney function has gotten so dangerously low that without a transplant or dialysis I will die.
The personal reason: I enjoy life and I love my family and friends and the world! Although I do identify as Deafblind and some people may think that is a depressing state to be in, I don’t. I tell people all the time that although Deafblindness certainly has its challenges, it is easy-peasy compared to having to deal with kidney disease. That is because there are always work arounds to Deafblindness, and some are even kind of fun. But with kidney disease, it zaps my energy, my strength, my ability to say “yes” to things, it gives me brain fog, it causes me pain. There are no workarounds—it just is—and it feels like it is eroding who I am in a way Deafblindness never did. I want to be present and able to support my husband and children. I would like to see them grow up and maybe even meet my grandchildren. I lost my mother when I was a young adult, and she never got to meet my children. I think all the time of stuff she missed that I would have liked to share with her. I hope I can be around for my children as they go through their adult life, too. I haven’t been able to work a whole lot the last couple of years and I would love to go back to work. There are things I still have to do and contribute. My husband grew up in Europe and I’ve never even been outside of North America and would love to travel with him. I’m just not done yet!
What About Dialysis and Why a Living Donor?
Dialysis is not a cure. It simply sustains you for longer until you can get a transplant. It is very taxing on your body to be on dialysis and contributes to other health problems and even death. Dialysis is also a hard way to live. It largely staples you to your location and takes up a good chunk of your day. You keep a very strict diet while on dialysis. Most people on dialysis complain of fatigue. We are, of course, very lucky to have dialysis, but it is not a long-term solution.
Many people may be familiar with deceased organ donation, which is when someone dies from certain other causes, their families are sometimes able to donate their organs. There are far more people in need of kidneys than are available through deceased donation. So, some people are on the transplant list so long, they die before they are able to get a transplant. Those who choose to be living donors offer a far better option for recipients with better outcomes. Because living donations can be scheduled in advance and the surgeries are done at the same time, the kidney has minutes of “cold time” or the time the organ is outside of the body. Cadaver donations are always an emergency situation and the “cold time” can be several hours. This means that they have a lower success rate and can last for shorter times than a living donor. Living donors also allow for “pre-emptive transplants” which happen a little bit before someone needs to go on dialysis, which also increases the chances for success as well as vastly lowering the time the kidney disease interrupts someone’s life. Also, every living donor not only helps their recipient, but they also help all patients who need kidneys by helping to lower the wait list.
Have you asked your close family and friends?
Yes, and for a variety of reasons, my immediate family and family of origin are not eligible. I realized early on that many of my circle of friends are disabled themselves and have other health conditions that make them ineligible. It is a side effect of being in the disabled community, I guess. So, I decided to cast a wider net, which is really awkward and hard to do. I figured at least by doing this it might raise awareness for the need for living donors.
What are the risks?
I feel like it is not my place to answer this question, so here is a page that tells of the general risks. Of course, the medical staff would cover all risks individually with you. It is important to me for my donor to be safe and make and educated decision about the risks. I do feel that the transplant programs that I have had some involvement with, either my own or those of friends, really do have it as a top priority to keep living donors safe and healthy.
Who is eligible to become a living donor?
Here are the criteria of my program at OHSU. It is pretty detailed. If you are not sure whether you meet the criteria, it is fine to start the process and talk to the staff at OHSU. They will help you go through your medical history and see if you would be a good candidate. Please know that nothing about you or your medical history is shared with me. You get your own separate case worker who keeps your information and anything you say confidential. The only information I get is if it is a go or no go. Although, for example, my sister and I chose for ourselves to talk together about the process as she was going through it, the transplant team did not even tell me her name, just that someone was being evaluated as a living donor.
What if I am not a match?
If you are not a match for me, but meet the other criteria, you have the option of going through a “paired exchange.” This means that if you are not a match for me, and another living donor is not a match for their recipient, we can “swap” living donors. Sometimes, there are even 6- or 8-way swaps. So, indirectly, you are still donating a kidney to me. Paired exchanges help more people get better matched kidneys for better outcomes
Do living donors have to be local?
No. Much of the initial screening can happen at your local health care facilities. There are two visits that would have to be done near me. One is a two-day testing visit and the other is the actual transplant itself, which entails a few day stay in the hospital and a week-long local recuperation before going home. Currently, due to Covid, they are also asking donors to come a week early to test for Covid, but this may change.
I might be able to consider changing transplant centers to one more local to you. This would depend on some logistics like whether your local program would accept me and my insurance, and whether I can safely travel there.
What exactly would a living donor have to do?
It takes several weeks to a few months to go through the donor process. What is required is going to look different for every person, depending on your health, age, and other factors. You basically do a series of tests, like bloodwork and ultrasounds that can be done over a few weeks. Then the surgery itself will take usually 2-3 days in the hospital, and then a couple of weeks to take it easy to recover. Most people can return to work on light duty in about a week. What I have heard over and over again from living donors who have gone through the process is that the surgery was not bad at all and the time to recover was fairly easy. But that it does take a commitment for the next several weeks to a few months of your life.
How much does it cost?
There is no charge to you or your insurance for any of the tests, surgery or related medical care and checkups having to do with the transplant. My insurance covers 100% of transplant related costs. There can be indirect costs that involve missed work, childcare, travel and those types of things. There are several charitable organizations that help out with these costs. Usually, they base their criteria on my financial situation, not yours. When my sister was testing, I applied to one of these organizations and did qualify for funding. I am, of course, willing to work with you in any way that I can and am allowed to make the process financially and logistically easier. (There are lots of rules against recipients’ compensating donors for organs that I have to follow.)
I’m interested, What do I do next?
The first step is to connect you with my transplant program at Oregon Health & Sciences University. You can either contact me directly and I can give you an intake link to get the process going, or you can talk to OHSU living donor program directly. You are not committing to anything at this step or any step along the way until the final decision, you are just showing interest and seeking out more information. If you let me know you are interested, I can give the program a heads up to look out for you which may help expedite the process a bit.
Contact me at:
Lisa Ferris
(971) 732-4561 (text)
Contact OHSU at:
OHSU Living Donor Program
(503) 494-8500 or (800) 452-1369 ext. 8500
Where can I learn more about becoming a living donor?
OHSU Living Donation Program (My current program)
National Kidney Foundation-Living Donation
The Kidney Fund—Become a Living Kidney Donor
National Living Donor Assistance Program (I am eligible for this program, which assists living donors with indirect expenses like lost wages and travel.)
I cannot be a living donor, are there other ways I could help?
Yes, here are some of the following things that would help:
- Help spread the word. Talk to people you know about living kidney donation. You may share this information with them.
- We are looking for possible help with rides and some of the logistics in this process. We would like to find local volunteers for both emergency and nonemergency transportation. Non-emergency would be the occasional ride scheduled in advance from my home in Hillsboro to medical appointments at OHSU or other medical offices. Emergency rides would include the ride I might need late at night to get to the hospital if an kidney becomes available. There would be no warning and it would have to be quick, but this would only happen once or, rarely, 2 or 3 times. (sometimes patients are called in, but the kidney is a no go).
- I may also be looking for communication assistance. Because of certain rules regarding privacy, I have had challenges communicating with medical offices. This would be things like helping me make appointments and schedule conferences or ask quick questions. It might also include the dreaded filling out of paper forms when I can’t find them in an accessible format.
- If I get a living donor who needs help with expenses or other things, there might be ways you can contribute to that process.
Please let me know if you are interested in any of these ways of helping out by emailing me at lisaferris@icloud.com.
Thank you so much for reading and considering living kidney donation. It means a lot to me and my family.
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