Maria Flannery is using Facebook to find a hero and save her life.
After receiving a kidney transplant from her father 18 years ago, the Hopkinton, Mass., resident needs another one. That 77-year-old kidney has now failed completely. The mother of two is on dialysis, but as a diabetic, her body is less able to tolerate a lengthy duration of dialysis treatments. As time goes by, she will become less suitable for a transplant.
As she puts it, the clock is ticking.
Without a transplant, Flannery, 48, fears she might have less than five years left, not even enough time to see her 12-year-old daughter, Morgan, graduate high school.
After two and half years on the transplant waiting list, she is reaching out through social media to find a suitable donor willing to give her the gift of life. Whether you'd ever consider donating, she asks people to like her Facebook page, A Kidney for Maria, and share it with friends to get the word out. In just over two weeks, she has more than 230 people following her page.
"It's a slow grow," she says, "but it's happening."
There is no data on the success of finding donors through Facebook or other social media. But Aisha Michel, the spokeswoman for Donate Life America, said that when Facebook started allowing members to share their organ donor status, a link to Donate Life America's National Donor Registry was included.
Donate Life's statistics show New England states received 3,105 new donor registrations over the first six days following the new Facebook feature -- 22 times more registrations than the average for the same time period. Nationally, donor registration rates increased 10-fold in the first week.
Even so, says Michel, "We are not close to meeting the need. With about 110,000 awaiting organs, only about 28,000 transplant procedures were done last year. The need is greatest for kidneys."
I spoke with Flannery in late June about her condition and her decision to use social media to find a suitable donor.
You have been diabetic since you were 10 years old, but when did you first learn your kidneys were failing as well?
That would have been 1987. The first time, I was still pretty young. At that age, you still think you're invulnerable, so I didn't look at it as seriously as I do this time. I think I know a lot more this time. Still, it was a scary unknown thing that I was headed toward. Transplantation was also very successful at the time, but not as successful as it is now. I had concerns about the transplant itself, the surgery, what life would be like afterward with all the medications. It was definitely a scary time.
What was the conversation like with your father when he told you that he was going to donate his kidney to you?
I've never discussed my father and my conversation about him donating a kidney. It was very matter of fact that he'd be the one to donate. He made it that way. So, I guess I got through that initial decision making part OK. He made it extremely comfortable for me, just knowing that he would be there the minute the tests showed that I needed to go in. I was fortunate that we were able to hold out until my kidney function was borderline dialysis and we could go in at the last minute before I needed dialysis. It was the perfect balance. He made it perfectly comfortable, safe, and everything else. He was great.
It was the day of the transplant that was very emotional. Seeing my father in his hospital gown and our goodbye before we went down for surgery, it was very difficult. I remember holding it together somewhat until he left, then breaking down on a stretcher in the elevator on the way down to surgery with just my husband and a hospital attendant. I had such guilt about him having to go through surgery. I've never come even close to finding the right words to thank him. Thank you just doesn't do it. There are no words. I've always hoped that my positive attitude would show him how truly grateful I am to be here.
What inspired you to use Facebook and social media in your search for a kidney donor?
Well, I have been on Facebook for a while and I have seen other people using Facebook to search for donors and I saw it being successful. My first thought was Facebook. My very good friend has a friend who found one on Facebook, and I've found other people who have as well. I figured that it's a great way to get the word out.
Have others looking for kidneys reached out to you through your Facebook page?
Yes, I have met others through Facebook. I actually started my page after following someone else's page, Calling all Kidneys, who received a successful kidney transplant through Facebook.
How have people reacted to the Facebook page so far?I think some people feel awkward sharing the page and might think that they're asking their friends to actually donate a kidney. We have been stressing that we aren't asking people to donate a kidney. We're just getting my story out there with the hopes that a donor will find me. There are many people who give altruistically, and we're hoping one of them reads my story.
The reaction has been positive. People mostly liked and shared the page with few actual comments. A couple have asked more detailed questions about living donation and contact information.
What does your family think of you putting yourself and your condition out so publicly on Facebook?My family fully supports me going public. In fact, they have encouraged me to post some very personal pictures. They all just want me to be healthy again and would do anything for that to happen. I recently posted a photo of me in the hospital after having the dialysis neck access put in and my first dialysis session. Dialysis can take such a toll on your body. Most people don't see my bad days. I posted the photos to show the truth.
How have friends who may not have known the seriousness of your condition reacted to the Facebook page?
The reaction I have received from friends is great sadness and offers to help with meals, rides, and anything else we need. People I haven't seen in years have been willing to share my story. Even if a match isn't found in the end, I am so grateful for the support and outpouring of love that has come our way. I feel so fortunate to live in a time where social media can spread your story so far and wide just by the push of a button.
If not for these types of technology, what would be the traditional way to find a donor?
Well, word of mouth and that would be so slow. I can't believe the difference that social media can make. You can reach thousands so quickly. We're also looking into taking other routes, like a kidney swap, or a kidney chain if no direct donor can be found. A kidney swap occurs when a living kidney donor is incompatible with the recipient, and so exchanges kidneys with another incompatible donor/recipient pair.
What is the current status of the kidney you received from your father?
Now, that kidney has failed. It did great for about 16 years, with absolutely no problems at all, not one. No hospitalizations, totally healthy, but then the diabetes started affecting his kidney. It's an older kidney. My dad is now 77 years old. That kidney had a little bit of damage from one of the medications I take to prevent rejection, which is also toxic to the kidney. It's called Cyclosporine toxicity. It actually lasted 18 years until I just started dialysis in April.
When I first found out my father's kidney was failing, five people came forward to offer to be tested for donation, but none were a match.
How long to transplanted kidneys typically last?
It's different if you get a deceased donor's kidney and a living donor kidney. The deceased ones, on average, last about 10 years. The living donor kidneys last 20 to 30 [years] or even longer now.
You're on dialysis treatment now?
I am, three days a week.
Can you walk me through a typical dialysis day?
Sure. My husband and I get up at 4:30 in the morning. I'm on the early shift of the day. During the school year, we were working it so that he could drop me off and get back home in time to get the kids up to go to school. I'm on the dialysis machine for three to three and a half hours. It's a brutal process. I think some people can handle it better than others, but I'm a small person. I get severe side-effects that pretty much wipe me out for the day. Yesterday was a pretty bad day so I can tell you exactly how it feels.
It's exhaustion. I get nauseous. I have an extreme headache. I get pains in my legs. I get almost like a buzzing sensation throughout my body, almost as if I've had a ton of caffeine. You feel "off," like you can't walk right. When I stand up, I need assistance getting back up, that's why I can't drive myself. That lasts a good six to seven hours in a severe state. Later in the day, about four or five o'clock, I feel it start reducing, but I'm still not myself until the next day.
How does dialysis affect your diabetes itself?
Especially for type I diabetics, it's a much faster progression of the disease. Whereas, non-diabetics might be able to withstand dialysis for five to 10 years even though they are getting sicker, someone with diabetes gets sicker much more quickly, so it is unlikely that I would even make it five more years. For example, heart disease speeds up, circulation, problems with neuropathy. It's mostly heart disease, a lot of diabetics end up having heart attacks, so that progresses much quicker. It's very hard to keep your blood sugar under control as a diabetic with kidney failure.
Is type I diabetes a hereditary condition? Do your children show any signs of becoming diabetic?
Both of my children are adopted, so, hopefully they will not get it. One of my siblings has type I diabetes, our parents didn't have it, our grandparents didn't have it. They did a huge study in our family and I believe it was my mother who had the gene for it, but never became diabetic.
When you go for dialysis, is it just your husband who goes with you, or do your children sometimes go with you?
No. My husband brings me and, then, comes back. I'd rather he be home helping out or doing things there, because I'm really in and out of consciousness during dialysis. You never really sleep, but there are 18 chairs at this particular facility and you always hear machines beeping and nurses are always coming over and injecting different things into my dialysate. I never fully sleep, but I am in and out of consciousness, so I try to keep everyone out of there. My kids see me pretty healthy. They see me come home and I'm pretty wiped out, and I'll just lie on the couch for the day, but they don't really see the sick side of me. Although I think in some ways it could be really good for them to see, I don't want to put them through that much because they're still pretty young.
They are fully aware of your condition and all that entails?
They are. They were both adopted after my first transplant, so they see transplantation as a normal part of life. They think that if you have a transplant, you are completely healthy and normal. I used to go 90 miles an hour. There were no signs of illness at all until recently, but they're fully aware, yes.
How does the organ transplant waiting list work?
Here in region 1, which is not New York or Vermont, but includes the rest of the New England states, once you have a certain level of kidney function, called a DFR, of less than 20, you can be listed. I was listed in October; it will be three years. I waited two and a half years to get to the top of the list. I was listed on the kidney-pancreas list, which in this region has about 90 people on it. My doctor suggested this because, he said, one, the pancreas will get rid of your diabetes and, two, it's a shorter list. The kidney list has over 3,200 people. It's a least a five-year wait.
I went on the kidney-pancreas list, moved up over time, and reached the top of the list. You get certain points while on the list. If you have started dialysis, you get points. If you're sensitized and difficult to match, you get points. All these points are added up and you move up the list that way.
The difference between transplants from deceased and living donors is that organs from living donors last longer and there are also some issues with rejection?
Yes. Since starting dialysis, they've lowered the immunosuppressants that I take to help prevent rejection of my first transplant. I've been taking those since 1994 when my father gave me my first kidney. I never experienced any rejection issues during those years, but when I started dialysis, they had to lower it because you're more prone to infections. When they lowered those drugs, my father's kidney recognized that it was where it doesn't belong so it started putting up a fight, it started rejecting. In doing that, my body produced a bunch of new antibodies. Those antibodies are now making it difficult for anybody who wants to donate to be a match.
I am 70 percent sensitized, which means that only 30 percent of organs that come that would have matched before the sensitization will match now; 70 percent of previously matching organs will not match me now. The longer you're on dialysis, they can see more sensitization.
Does that sensitization apply equally whether the donor is living or deceased?
Yes. That's why my doctor suggested trying to find a living donor at this point, because Mass General only got four kidney-pancreases in all last year. My odds now would be 30 percent for matching any one of those. That's really low.
To get a kidney-pancreas, you must have a deceased donor?
Yes, the best thing for me right now, my doctor says, is to get a kidney from a living donor to get off dialysis and have a longer functioning kidney and then get a pancreas transplant which would end my diabetes and stop the complications from affecting the new kidney.
Your immediate danger, then, is from the kidney failure. You can live with diabetes, but without the kidney…
It's not good. Exactly. Kidney failure is a silent killer. I posted a picture on Facebook and all my friends said that I looked so good, I looked so healthy, no one would ever believe that you are dying of kidney disease. You can look good, but inside things are falling apart and quickly. Just because you look good doesn't mean you are good. So I posted another more intimate picture showing what dialysis does to me.
The longer you are on dialysis the less suitable you are for transplant and at some point it becomes too late?
Absolutely. The longer you are on, the more complications you have. Most people see heart attack complications; heart attacks are very common. Every year that you're on dialysis, I heard a doctor at Johns-Hopkins say that there's a 5 to 15 percent chance of death. That grows over time, mostly it's vascular, vascular heart disease, heart attacks, strokes… I see people taken out of dialysis, not every week, but pretty commonly on stretchers with chest pains or just so sick and… the sooner you're transplanted the better.
There's another study that was just done that showed that if you're on dialysis for less than a year, it won't make a difference in the success rate of your transplant, but if you're on dialysis for over a year, it will. I have already been on dialysis for three months, so it's like a ticking clock for me.
Other than the success rate for transplantation, what are the other long-term health ramifications for spending extended time on dialysis?
It's grim, eventually death if you stay on it. If you do get a transplant, you go into the surgery less healthy, with more vascular problems, heart problems, and you are not going to do as well.
What kind of person would be a good match for you as a kidney donor?
Anyone in the general public that's thinking about it would have to be blood type A or O, and then they go into cross-matching where they actually put their blood and my blood into a test tube to see if there's a cross match. It would tell them immediately if the antibodies that I have built up would reject their organ or not.
If there were someone that passed those tests, they would go on to further testing. They have to go through full psychological testing. They meet with surgeons, nephrologists. It's very extensive. It doesn't take a long time, but they are very thorough. They want to make sure they are getting someone who is mentally prepared, physically prepared and won't have problems after.
The life expectancy is exactly the same for people after they donate. They are exactly the same because they have been checked out completely. The person has to be over 18 and under 65 in overall good health, no history of heart disease, diabetes. They have to be a non-smoker with a body mass index, BMI, of less than 30.
Has anyone contacted you after learning of your case through Facebook offering to donate or be tested to see if they were a match?
Yes, one woman noted that she would like to be tested, but has to lose weight [to qualify as a donor]. She posted that she has to lose 35 pounds, has already lost nine, and was hoping to do it in time to be a potential donor. That really struck me that someone would be that driven to help. It made me so happy for her, too, that she would be healthier even if she weren't a match.
If you were to find a donor and get your kidney, what are your plans for the Facebook page afterwards?
I think it will be really important to keep the Facebook page running for a couple of reasons. First, to show people how healthy I am [after the transplant], and how the transplant changed my daily life. Secondly, I'd like to help others who are creating pages with hopes of a donor finding them, give them guidance: what worked, what didn't work. I'd like the page to be used to post transplant news, statistics, direct links for Donate Life to be an organ donor for awareness purposes. Aside from my own needs, the organ shortage desperately needs to be addressed. It's so devastating that there is a medical procedure to make people better and that a social issue, lack of awareness, stands in the way.
What are the financial implications of donating?
None. They pay nothing. Their insurance pays nothing. The recipient's insurance covers everything 100 percent. There might be charges for travel, but I'm not sure what the rules are about that. If we are allowed to legally, my husband and I would cover charges for that. [Note: Recipients are allowed to cover travel expenses, according to The National Living Donor Assistance Center.]
Have you ever considered the possibility of traveling to one of the countries where people may purchase organs?
No. I guess to live with someone else's organ, I have to know that they did it from the heart and not just because they needed the money. I know that I'm getting such good care at Mass General and I wouldn't want to worry about that. There are just so many reasons why I wouldn't go that route.
How to help Maria and others who need organ transplants:
For more information on becoming a kidney donor, contact:
Donor Intake Coordinator
Visit Donate Life, a non-profit organization committed to increasing the number of organ and tissue donors.
Visit Maria's Facebook page: A Kidney For Maria