Lung transplant surgery can be a mean to improve quality of life for some but is certainly a life-saver procedure for others. It just depends on the disease of the patients (COPD, pulmonary fibrosis, cystic fibrosis, etc). When someone’s disease is so advanced that they can’t breathe, there is nothing to replace the lungs unlike dialysis for failing kidneys or a mechanical heart for a weak heart. Unfortunately, lung transplant comes with a relatively high risk of short term and long term complications compared with other organs.

The main reason behind that is the lung is the only organ exposed to the outside world. The liver and kidneys are deep inside the abdominal cavity, no worry there. The heart, despite being attached to the lungs, is not exposed like them. It is well protected inside the chest. Basically, what I mean is the lungs make contact with the air we breathe plus everything else found in the ambient air. It could be pollutants, irritants, mold spores or whatever else found in the air where you are at. This is why it is so critical for a lung transplant recipient to be aware of his surrounding and not be at a place that they should not be. Every dusty area or known to be dusty task (sanding, house cleaning, even gardening, etc) are usually prohibited or discouraged by your transplant team. When in doubt with an activity or an area, ask your lung transplant team. Listen to them; they know what to do to help you stay as healthy as possible!

Every single respiratory symptom reported by a patient is usually taken seriously by the transplant team. This is especially true during the winter when it is flu season. Any benign respiratory virus for the general population could potentially be real bad for lung transplant patients. The easiest way we can identify the kind of virus, if any, is to swab the patients nose. It is not the best experience for the patient but it can save a lot of trouble (if you don’t know what it is, its like sticking a Q-tips 2-3 inches in each nostrils and then swab…). Usually it makes the eyes teary!

We have caught some cases of influenza last winter that we were able to successfully treat. I am just afraid that a same patient will not call us in the future if they have the same symptoms because they are afraid of the nasal swab. Please don’t do that. That could be a mistake. You went through lung transplant surgery and its aftermath. A nasal swab should be a walk in the breeze¦

This was a very quick overview of lung transplant complications. The goal was to make you understand you are always at risk of breathing something potentially bad but by being informed you can be more careful without becoming paranoiac. Follow your lung transplant team advices; they are the expert to keep you out of trouble!

If you tell an organ transplant patient there will be no need for immunosuppressant drugs anymore without a risk for rejection, what would be the reaction?  I think there would be a suspicious reaction at first and then a big sigh of relief.  Nobody else is better informed than these patients regarding the risks and side effects of anti-rejection therapy.  This is the only way known to transplant specialists to keep the graft working and the patient alive.  Hope is on the way.  Not one, not two but three studies came out this week in the Science Translational Medicine suggesting that one day it could be possible.

One of the study is led by Britains Oxford University Andrew Bushell and calls for retraining or reprogramming  the patient owns Treg-cells (regulatory T-cells: those white blood cells” role is to suppress our own immune system response as needed).  The goal would be for those T-cells to recognize the transplanted organ as friendly instead of an intruder like it is now.  If that can successfully be done in human (it has been accomplish with mice in the research), the regulatory T-cells would do the current job of the anti-rejection drugs.  The patients” own regulatory (AKA suppressor) T-cells would prevent the body’s immune system from attacking the transplanted organ and as a result will decrease the risk of rejection.

Basically, those T-cells are like the police of the immune system; they keep the other kind of white blood cells under control so they don’t attack continuously the body.  They regularize the immune system just like the name defines it.  That would potentially eliminate the need for powerful drugs like neoral, prograf, rapamune and cellcept to name a few in the long run.  In the immediate transplant phase, those drugs are still expected to be given as the T-cells are reprogrammed in a lab.

That study was conducted on mice in a lab we are years away from testing that on humans but it is a promising start.  This would be a major breakthrough in improving graft and patient survival.   By having less rejection and longer graft survival, more people could be transplanted with the same number of organs available.  The reason being less people needing a second transplant.  Also, there should be less complications caused by the current drugs like kidney failure and skin cancer by example.  Those two complications are very common and debilitating.  Their respective treatments, dialysis and chemotherapy,  can be very expensive too.

Another important point in the study was the fact that the regulatory T-cells would still be able to recognize infections and cancer as a threat to the body.  Therefore, they will get out of the way of the attacking white blood cells.  The other good news is it could also benefits the patients with autoimmune disease who are taking medications similar to the transplant patients to weaken their immune system.

In short, this could be a major breakthrough for the transplant community and their patients if it ever becomes available at the bedside to treat real people.

Source:http://www.reuters.com/article/2011/05/18/transplants-cells-idUSLDE74H09B20110518

The waiting list for a kidney transplant is anywhere from 2 to 4 years depending on where you live, your blood type and other factors like compatibility and your size.  The list has about 80,000 names on it, and 11 of them die waiting, daily, which represents around 4,000 lives per year that are not saved.

I found an interesting article in a magazine called The Atlantic.  Its author, Conor Friedersdorf, suggests that the federal government should reform its laws regarding organ donations based on the fact that more and more Americans are going abroad to find a kidney.  One of the popular destinations is Peru.  Of course, this is a poor country and who really knows about the quality of the healthcare system.  People in those countries are willing to give one of their kidneys in exchange for some money so they have a chance to live a decent life.  There are risks to both the recipient and donor when these surgeries are performed in third world countries.  Who knows if they really do a good job in looking for compatibility and transmissible disease the donor might have.

Some people are willing to take the risk just because they are tired of living on dialysis (the alternative to kidney transplant).  Dialysis has its own risks: catheter and blood infection can all lead to death.  Who wants to spend half of his life in a dialysis center anyway?

Like I mentioned earlier, it takes years to get a kidney transplant for most of the people waiting on the list unless they can find a living donor.  Under US laws, it is illegal to pay someone for an organ or receive money from organ donation.  If transplant centers were allowed to give good money, like $30,000 or more per kidney, to the donor, I do think there would be a lot of people willing to give organs.  That could be a way to trim the waiting list pretty quickly.

I am afraid that if this whole process is not done the right way it could lead to some ethical and social problems.  One of those is would rich be allowed to bypass poor patients by offering extra incentives?  Should only hospitals be allowed to give money to the donors?  Would the donor and recipient be paired on a first come first serve basis or the recipient will be able to handpick his kidney?  Would there be good or bad reasons to accept a living donor candidate based on the motive?

Those all are questions that a panel would have to answer before moving forward.  I don’t think the living donor transplant centers are immediately ready to handle the surplus of work.  In a matter of a few months, one could see an increased of several thousand potential donors per hospital.  You need staff and infrastructure to process and screen all those kidney donors efficiently and safely.  A well-known hospital in the state of Pennsylvania temporarily shut down his living donor program last week because a kidney transplant recipient contracted hepatitis C with the new organ.

Even if the government allows people to get money for their organ, which I would not have a problem with, it will take several months or years to catch up to the list of 80,000 people waiting for a new kidney.  You just can’t safely screen and do surgery on that many people overnight.

Source: http://www.theatlantic.com/politics/archive/2011/05/apathy-causes-kidney-patients-to-die-needlessly/238840/

If you live in China and you happen to believe in the wrong religion and have the bad luck of getting caught and put in jail, you have a really good chance of becoming an organ donor without your consent. This is what happened to thousands of people just about every year.  Most of them are executed and then become organ donors. Those prisoners are from the Falun Gong spiritual group who has been persecuted by the government for years and kept in labor camps. They seem to keep a match list from the prisoners and execute them as needed.

Obviously this has brought bad press to the transplant community in China where the government is now trying to start a registry program just like here in the US and other industrialized countries. Without a big surprise, up to 90% refused to sign it for several reasons ranging to lack of trust in the system to personal beliefs.

Here in the US, once someone signs the organ donor registry, they automatically become potential donors.  It is unclear how the whole registry thing works over there but I bet some people don’t trust the government if they sign it.

In China, last year, only 28 persons in the entire country gave their organs according to a Legal Evening News report.  There are about 13,000 transplants every year, so, if you do the math you start wondering how many prisoners got executed for their organs.  There are a lot of conflicting reports on the source of the organs. Amnesty International said in its 2009 report that China executed at least 1718 prisoners.  Where are the other 10,000 organs coming from?  Your answer is as good as mine.

Source: http://www.theepochtimes.com/n2/china/chinas-new-organ-donation-registry-unlikely-to-take-off-55639.html

Whenever you talk to a transplant coordinator it may happen that you hear the word OPO. What the hell does it stand for and what do they do. OPO means Organ Procurement Organization and there are 62 of them in the country grouped in 11 regions(see map below). Their role is to promote organ donation in their respective area of responsibilities. They are also mandated by UNOS to organize public activity in order to get more people to sign their card to become organ donor.
Since some state, like Texas, mandates every hospital to report every death to their local OPO, they are getting thousands of calls for potential donors. One OPO in Texas gets over 30,000 calls a year! This is more than 3 calls every single hour 24h a day. The majority of those calls are turned down because the potential donor is too sick with too many infections or something else is wrong. Let me tell you that they screen the patients really good asking tons of questions.  Very few patients qualify as organ donor because for several reasons but a lot of them still can be tissue donor candidates.
Once the OPO coordinator decides that they have a potential donor they don’t want anybody, not even the physician, to talk to the family. They have highly trained professionals who will approach the family to discuss about donations. They use different tactics based on the religion or the race. They try very hard to have the family to consent because this is how they make money; by placing organs to patients in needs of transplant. Everybody’s got to make a living!  Once a donor becomes available, all the information is entered in the national “website” of UNOS (see the other 4/30/11 post) called Unet.  The donor information is then matched with potential patients on the wait list.

Basically the Organ Procurement Organization (OPO) only deals with potential donors and their family.  They don”t deal with the future transplanted patients.  Here is a link to check who is in charge of finding organ in your area:

(source:http://web.ics.purdue.edu/~nkong/Publication/IERC02 Region.pdf)

Almost every day we hear about human organ trafficking in other countries.  Here, in the US, we have several state and federal laws that regulate this business but we have one in particular whose sole mission is to regulate the organs allocations.

United Network for Organ Sharing (UNOS) is the private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government.  Basically one of UNOS responsibilities is to make sure that organ transplantation is as safe as it can be by setting a national standard with rules that every single transplant center in this country must follow.  UNOS will survey every program every three years with a very comprehensive examination of practices and to make sure everybody follows the rules and its policies.  Trust me, when UNOS is in the house, people are nervous!  We just went through that at our center and a lot of people were anxious.  It is almost like the representatives are God!  As a matter of fact, they almost are because they have the power to shut a transplant program down.  They will go through charts after charts to make sure every single detail is present.  They mainly want to make sure that patients make an informed decision when signing in for transplant.

UNOS uses a portal named UNet that manages the wait list and organ offers from anywhere in the country.  This is the tool used to connect every transplant centers and organ procurement organization like LifeGift in Texas or OneLegacy in Los Angeles, Ca.  Offers can be sent from anywhere in the US, even Porto Rico and Hawaii!  Someone that lives in New York would not get a heart from California but could certainly get a kidney from Hawaii as the time an organ can spend outside a body varies.  But this is something I want to talk in a future blog.

Organ Transplants Resources mission is to provide an educational blog and resources about solid organ and tissue transplantation to increase understanding and knowledge for patients and their families or anybody else with an interest in this life saving medical advance.  Healthcare professionals working in the field of organ transplant will share their experiences with real everyday situations.  We will also review the actuality of organ transplantation in the news. The ultimate goal is to promote organ donation so more lives can be saved with these surgical miracles.  Once again, welcome aboard and get ready for an interesting ride!

Why Organ Transplant Resources? Organ Transplants Resources website was created to be a place where transplant patients along with their families and friends could easily find information about the whole process of transplantation. A blog written by healthcare professionals working in the field of transplant will share their daily life experiences in order to make things easier to understand for the public.

I have read a lot of misinformation lately about Steve Jobs regarding his 2009 liver transplant.  Even at the time it was make public a couple of years ago, that misinformation was coming out.  A lot of people are saying that Steve Jobs received a liver transplant by bypassing the waiting list.  I will tell you that it is impossible because the rules are so strict.  A transplant center can be put on probation or even be shut down by UNOS (United Network for Organ Sharing) for doing such things.  UNOS is the government contractor who manages organ allocation and enforces regulations.  There is no way a transplant center will risk its future just to transplant a known person.  I am sure they kept good documentation of what they did just in case complaints like these would come back.

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 is no joke.  Britain’s health system is strongly considering offering free funerals to organ donors as a way to increase their donation rate.  More than 18 million people are registered donors but only 1,000 do so every year.  This is the lowest organ donation rate of Europe and half the US’s.  No maximum amount was set for funeral expenses.

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?

Pig Cornea

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.