Match on Facebook

Social media allow strangers to get in contact with each other and ask indirectly millions of people if they want to be organ donor. This has happened to a 38 years old man from Seattle who was desperately waiting for kidney transplant. He ended up creating a Facebook page named “Damon Kidney”, with the help of friends and family, which allowed him to find a perfect match. UNOS (United Network for Organ Sharing) acknowledges the existence of Social media uses from people looking for living organ donor.

Statistics

According to the federal government annual report, there is an average of 6,000 living donors who donates a kidney. This number has been steady for the past several years so this is why social media could play a significant role in finding more potential organ donors. The current waiting list for kidney transplant includes more than 90,000 patients and is growing every day. This show you to urge to find more living kidney donors.

First of all, the patient in need of a new kidney should have a family member or somebody willing to give his organ directly to him.  It is called a living donor.  A perfect match would be the best case scenario and they will be able to go ahead with the kidney transplantation.  Before 2008, if there was no match, that was it, no transplant.  Now, there is more hope.  The potential kidney donor and the patient, providing everybody consents, will be put on a national list for a kidney swap.

The objective is to pair the patient and his donor with another patient and donor in the same situation.  This is what a kidney swap is all about.  The end result is the same: both patients get a new kidney and both donors gave one.  This process opens more doors and allows more transplantations to take place because otherwise nothing would have happened without a match.

Sometimes it takes more than 2 donors to make it happen.  In other times it takes a much bigger chain.  The record in the US was a chain of 23 kidney transplants involving 46 people happening over a period of 2 months.  I cannot imagine all the coordination needed in order to make it happen.  People were scattered everywhere in the country.  From California to New York along with Washington (state) and Texas among the states involved.

The organism in charge of facilitating those paired exchange is the National Kidney Registry.  They have helped arranged over 270 kidney transplants since 1998.  They average wait time is only 11 months compared to the 51 months for the traditional deceased donor wait list.  There may be a transplant center near you that is part of this process.  A total of 54 transplants centers participate in this living donor program.

Pre-Transplant

The pre-transplant coordinator is responsible for helping the process of putting patients on the wait list.  They are usually responsible to enter patients’ info in the database (height, disease, labs, test results, medications, etc.)  The purpose of that info is to build a packet with everything needed to “present” a patient to the patient selection committee.  Once a patient has been cleared to be listed as a transplant candidate, they entered all info available into Unet (UNOS database) and the computer will rank the patient based on data entered and the type of organ needed.

They are also responsible to manage the wait list like updating new patients’ medical conditions in compliance with UNOS.  Once a physician tells them to initiate a new patient evaluation, they are also responsible to make that everything that needs to be done is done.

Inpatient coordinator

The inpatient coordinator will round with the physician in the hospital and will plan discharge like coordinating teaching among other professionals such as pharmacist and dietitian.  They will make sure the medication for home is approved by the insurance companies and do the prior-authorization as necessary.  They will also provide updates to post-transplant coordinators about their current patients.  They will write detailed notes to what happened to a patient while in the hospital to better facilitate follow up for the post-transplant coordinator.

Post-transplant coordinator

The role of the post-transplant coordinator is very important for the long term survival of the program.  A short definition of the job description would read as is: The goal is to keep the patients alive.  We are responsible for managing the post-transplant protocol that includes several tests, blood works and doctors’ visits.  We have to make sure the patients stay on track with their protocol and all tests needed are scheduled.  Once the tests are completed we help the physicians review the tests but they are ultimately responsible for making decisions.

We are the direct line of contact with physicians for the patients.  They are instructed to call us with any issues they are experiencing at home and then we reviewed with the on-call physician.  If tests or blood work are ordered, we have to make sure it is scheduled and then review the results with the medical team.  This role is more clinical than the other coordinators.

We all have direct communication with the physicians and it is our duty to report any and all issues and our goal is to keep the patients free of complication (if possible) and alive as long as possible.  We all have a bunch of reports to complete so we are in compliance with UNOS.  It is a very stimulating but demanding job as our patients require constant monitoring and care.  When we witness success story, it makes it worth it.

Young Living Donor still Better

The only setback with older donor is that the kidney does not last as long as for younger living donor.  This is still a better option than the alternative for those patients who have received the gift of life.  If it was not for the elderly donor, they may have needed to be on dialysis for many more years.  The average wait time for deceased donor is in excess of 5 years in certain region of the US.

Many physicians are not aware that older people can become living organ donor and certainly not all transplant centers are willing to take a “chance” on an older patient.  Some claims the risk of complications is too high but you have to look at this: several thousand patients in their 70’s survive heart surgery every year in the US.  The operation for giving a kidney is much less traumatic.  There is still a lot of work to do to explore this group of potential donor, they only represent 1.5% of all living donor.  In numbers that means 89 donors only out of about 6000 kidney donors.

80 the new 70?

It is all about doing better education of not only the population but also for the healthcare professionals to promote what can be done safely as far as organ transplant go.  Every year limits of what was thought to be reached are pushed in the organ transplant world with the only goal of saving lives.  With the population living longer and healthier, will 80 become the new 70?

Dark Side of the Story

Despite having relatively good outcome with pregnancy, renal transplant patients should discuss the risks with their nephrologists.  It is not all kidney transplant physician who will support their patients’ idea to have a baby.   They also need to find an OB/GYN willing to take high-risk pregnancy patients because the follow up will need to be tight.  Despite having more babies delivered by percentage than the general population, the complication rate is much higher.  These complications need to be addressed before the pregnancy to improve outcome.

Preeclampsia Risk

There is 6 times more chance for preeclampsia (high blood pressure and protein in urine) in women with history of kidney transplant.  Some of the risk factors of preeclampsia that are related to a post renal transplant patient are kidney disease and vitamin D deficiency.  This condition can lead to eclampsia if left untreated and can be fatal for both mom and baby.

Gestational Diabetes

Another complication that is not as bad but still need to be considered is gestational diabetes.  The chance of having this complication is double the rate of a pregnant woman with no history of renal transplant.  Because most transplant patients take prednisone as immune suppressant, diabetes rate is higher to begin with.  Like all transplant patients know, prednisone is well known to increase blood sugar level.  The complications for this kind of diabetes (it mostly affects baby)are: excessive birth weight, jaundice, respiratory distress, higher risk of diabetes type 2 later in life.

C-Sections

More than half of the renal transplant patients having babies have them through a C-section versus one third of all pregnant women.  Any surgery after organ transplant has more risk than for anybody else.  C-section brings its share of complications such as infection, blood clot in legs, bleeding.  If a transplant patient is taking rapamune, it will have to be stopped ahead of time because that drugs delay wound healing.  Anytime there is a change in a successful immune suppression regimen there are risks for rejections.   The decision on how to have the baby should be discussed with the physicians ahead of time so the risks and benefits are well understood.

Pregnancy after organ transplantation should always be discussed with your transplant physician before the baby is conceived.  Having a baby is a lifelong commitment and that should always be kept in mind.

According to a group a scientists from Pittsburgh University, pigs are to be used sooner than later for human organ transplantation. In fact they are planning to start using the cornea from genetically modified pigs into human with poor eye sights. As you may already know, pig valve is already being used in human with much success for years. In order to have the “organ” accepted by the human body, the pig protein galactosyltranferase (you don’t need to remember that ) has to be removed so the corneas are not rejected.

How about Lung, Liver and Heart?

Solid organ transplantation from pigs (heart, lungs, liver) is several years away to be ready thought. Many issues have occurred, such as bleeding, clotting and organ failure during and after surgery. Scientists have transplanted pig organs in non-human primates for research but within months at the most, all organs had failed. There is also a major concern of transmitting animal viruses into an immune deficient human body which could cause a pandemic at the worst.

Controversy?

Another hurdle that scientists need to account for is groups for animal rights. These people will surely come out in force if pigs are used in mass for organ transplantation one day. In the mean time, scientists expect to be ready by the end of 2013 for corneal transplantation from pigs to human. We’ll see.

That is an original way of promoting organ donation but is not without any controversy.   John Harris, a bioethics professor at the University of Manchester, described the free funerals offer as “macabre” and said more people would sign up to donate if offered more direct incentives, such as cash.

This is the world we live in, money rules, so I believe people would be more responsive to organ donation with cash than a free incentive.  The question that needs a debate would be how much an organ is worth?

Reasons for his Fast Liver Transplant

Steve Jobs just did what a lot of Americans would do if they had the money; they would pick the hospital that gives them the best chance to be transplanted quickly.  This is why he went to Methodist University Hospital in Memphis, Tn.  This hospital performs about 120 liver transplants a year which is way more than the average hospital.  They also have a really good outcome: 90% of their patients are alive after a year with the national average being of 84%.  The main reasons he choose that transplant center is because of their short median wait time of 2 months.  This is really short.  The average wait time for a hospital in California for a liver transplant is 5 years!!  It really makes sense now why he went to Tennessee and it did not take time.  All the information I am giving you is available to the public.  The organ transplantation world is so regulated and monitored that there are tons of transplant statistics available.

Wait List

I forgot to mention that a transplant recipient can be on the wait list of more than one transplant center as long as the patient meets the criteria.  Usually, transplant hospitals want their patients to live within 2 to 3 hours of the hospital.  Let’s pretend Steve Jobs had a private jet, I guess he did, he could have lived in a central location, be on several hospitals’ wait list and be on stand bye to fly when he gets the call for his liver transplant.  That would have been theoretically possible but hard to manage.

Nothing Wrong

Basically anybody could have done what Steve Jobs did as long as you can afford it.  People are shopping for transplant centers every day in this country for diverse reasons.  Patients from overseas are even coming to the states to be transplanted.  Steve Jobs did nothing wrong, he could just afford what a lot of people couldn’t but would do.

                 This new treatment did not happen overnight.  Dr Strober has done extensive research for the past 30 years and his method includes a mix of radiation, donor stem cells and antibodies.  All three techniques are used to weaken the immune system.  The treatment starts as early as the kidney transplant recipient is stable enough.  It can be as early as a few days after the surgery.  The first phase is to use radiation against some lymph nodes, the spleen and thymus gland.  The goal is to weaken the immune system temporarily.

                  About 10 days later, time comes for the donor stem cells injection.  This one is done as outpatient.  To be noted that during this early phase of treatment immunosuppressant therapy is still being given to prevent rejection.  The cells injections have for effect to help the kidney transplant recipient’s immune system “blend” with the new organ so it does not attack it.  The body will get used to the new kidney and eventually consider it as “friendly”.

                  During this whole process transplant medications are weaned off as tolerated.  They monitor signs of rejection which includes decreased kidney function.  So far, according to the small study, 67% of the patients have successfully been weaned from immunosuppressant therapy.  That is a very small number but I believe it is a promising treatment.

                   The long term benefits are numerous is this can be done more widespread with a high success rate.  Because the transplant medications themselves can cause kidney failure, stem cell therapy could potentially prevent a second kidney transplant for several patients and thus making more organs available for transplantation.   There are other risks associated with regular transplant medicines like skin cancer, diabetes, heart disease to name a few.  Basically, patients could live longer with a better quality of life.

Here are a few questions that a potential transplant recipient can ask the transplant center during interviews. Remember, as a patient you have the right to choose where your transplant will take place:
1. What is the patient/coordinator ratio once I get my transplant? The reason behind this question is simple. You need to know if your coordinator will be overworked by following too many patients and if your calls are going to be returned. Lest patients per coordinator is better.

2. What is the average wait time on the waiting list? Important to know as some centers have shorter wait time due to the fact they are more aggressive in accepting organs.

3. What is the survival rate after 1 year and 3 years? That information is supposed to be communicated to you every 6 months by letter. It is mandatory that every transplant centers inform their patients about outcomes. Keep in mind though that some hospitals have lower survival rate only because they accept sicker patients that have been refused by other transplant centers.

There is another piece of information that is not well known amongst patients. Whether you are waiting for any type of organ transplant, you can transfer your care to a new transplant center for any reasons while waiting and you keep your priority on the wait list. You would not have to start all over. Also, you can be followed by more than one transplant center so you can increase your chance of getting an organ transplant. I suggest that if you do that, you go to two transplant centers in 2 different regions so you have access to more donors. You can do that as long as you respect your transplant center policy regarding distance to travel for the actual transplant. There may be some restrictions for heart and lungs. Whatever you do, just be as informed as you can be.