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You Will Need your Family (or Friends) After Your Organ Transplant

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One of the pre-conditions to be approved for organ transplant in any program in the US is to have family or friends willing to be with you 24 hours a day for at least the first  month after you go home. Some transplant centers name that a 24hr care contract. The caregivers, usually more than one person is needed but exception can be granted, need to sign the plan. The contract needs to show which caregiver and when they will be present to take care of the patients when he or she goes home. It is almost like signing up for a shift at a job!

The caregiver screening is usually done by a social worker specialized in organ transplant so they know what is expected from the family. The social worker meets with all parties who are showing interest in being a caregiver, including the patient. They ask question to find out almost everything about their life. They need to know what you do for a living, education level, psycho social history, etc. The more we know about the
family dynamic, the easier it is to work with the family to make it work.  Some families need guidance as far as how to deal with all that.  Organ transplant affects everybody, not just the recipient.

It is fairly rare that someone gets denied based only on the social worker professional opinion. At least it helps the staff get ready to deal with the family after the transplant. Because we know that some families will be difficult to deal with for several reasons.  We usually don’t have much time to make the right assessment with the sicker patients because things move fast.

Unfortunately, it happens that the family members motivation dwindles after the transplant and patients are left by themselves. This is when trouble starts for them. Some run out of medications while others stop showing up at follow-ups and have untreated rejection. For us, transplant professional, it is frustrating because we could have given the valuable organ to somebody else.  It is sad to see when it involves young patients who sometimes become narcotic (pain medicines) abusers.

It is very important that you have family or friends support for the first 3 months at a minimum after you go home, providing there is no major complication. They play an important role in making the transplant process as successful as it can be. Without family support, whether it is for kidney transplant, lung transplant or any other organ, it will be very difficult to have a positive outcome.



Should financial incentives be allowed for organ donations?

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           The National Organ Transplant Act (NOTA) was first signed into law in 1984 under President Reagan and underwent a few amendment in the following years.  What this law makes clear is that it is illegal to sale  human organs for transplant.  To this day it is still the law of the land.  There is, on average, about 120,000 people waiting for organ transplant in the US with the majority waiting for a kidney.  Last year was a record year with over 10,000 donors and almost 35,000 organ transplantations  in the US alone.  Roughly 20% (6,182 exactly in 2017) of those transplants were from living donors.

            It is not difficult to realize that not everybody will get a second chance at a better quality of life.  There is way more demand than offer.  The number of living donors has been pretty steady for the past 5 years according to UNOS data.  It is the number for deceased donor transplants that is expanding every year.  The increase in donors was credited to the opioids crisis who is unfortunately killing a lot of people.   Without any sort of financial rewards it would be difficult to imagine the number of living donors increasing from now on.  Any financial rewards is illegal at the moment in the US but we are kidding ourselves if we think brown envelops have never changed hands in the history of organ transplant.

              You need some very unselfish people to give a kidney to a relative and sometimes a stranger.  Unselfishness in this case is not enough to increase the number of living donors as we have seen over the past 5 years.  Money or some other form of financial incentives would most likely help.  At the moment everybody involved in transplant profits in one way or another with organ transplantation.  Transplant hospitals makes money off the actual transplant surgery and follow up care, physicians make a living out of those patients, drug companies make tons of money selling their medications and also let’s not forget about pharmacies who also profits from all that.  Organ procurement organizations (OPO)  also are able to stay in business by managing donors and maximizing donation.  Basically the only person not profiting from any of that is the actual donor or its family.    Should money (cash) be the only incentive???  Should only living donors get those benefits??  I don’t think so and will be covered in part 2 where we will cover the pros and cons of such system and different types of financial incentives. 

What is it the age limit to receive an organ transplant?

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Young vs less young

Usually, for younger patients, it is almost automatic to be accepted by a transplant center unless there is a major problem anticipated with compliance after the surgery or some other contraindications. For older patients it is a little more difficult because they sometimes have other diseases like diabetes, heart disease (for non-heart transplant patient), kidney diseases, etc. The physicians draw fire sometimes for wanting to transplant older patients (read more than 70 and for some center even 65) and argue with each other because they all have different opinions . The physicians’ response in this cases is “the patient is the one that showed up asking for help so we are going to help him if we can”.  Some older patients do get transplanted and end up doing well.  Some are denied because their multiple medical problems make the transplant too risky.  A transplant surgery should always be treated as an elective surgery.  If we don’t think the transplant will do any good, it should not happen.

Competition always brings the best

Don’t get me wrong though, some transplant centers will not do patients above 70 and sometimes 65 years old. It is more about the philosophy of the center and their aggressiveness. Another important factor who plays a role in accepting older patients is competition around the transplant center.  Is this the only transplant center in town and they can afford to be more picky??  Is there a hospital across the street competing for the same thing therefore have to accept older patients so they can do more transplants??  Just like in any business, competition will bring more service so look around and do your homework. 

MRB: like your life depends on it

Every transplant candidates case go in front of a medical review board who reviews everything in depth. This group includes physicians, surgeons, social workers, nurses, financial specialists and any other experts needed. As a group, they decide if someone is a good candidate or not. So, if you need an organ transplant and you have been turned down at some hospital solely because of your age, keep looking because you may find a hospital willing to transplant you.  You may have to travel to another city or out of state but at least you may get a chance.  It is simply possible that you may just be too old too.  No transplant centers have an obligation to transplant you.  

Million dollar question

Now is time to answer the question about age. There is not any written rule about age limit for organ transplant. It is based on each transplant center policies and belief. If you are an older patient, I would suggest knocking on every door until you are out of option if you really want a chance at life. You may find a transplant center willing to give you a new life.

CMV: Infection that Every Organ Transplant Patients Should Know About

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CMV stands for cytomegalovirus. Most of the population has been exposed to it and will rarely cause any problem to healthy persons. But it could cause a lot of trouble for patients who have had an organ transplant. CMV is from the family of herpes virus such as chickenpox, infectious mononucleosis and fever blisters (herpes I) and most people have been infected by the time they reach adulthood. The virus will remain dormant for years and sometime can flare up with minimal or no symptoms.

CMV and Organ Transplant

For organ transplant patients, the CMV virus is a problem because of the weakened immune system. At the worst case scenario it could be fatal. Most transplant candidates have already been infected in their lives without even knowing about it. The rare ones who have never been exposed will most likely get it from the donor. Very few lucky recipients with no prior exposure to the virus will get an organ from someone not exposed as well. Those cases represent less than 10% of all organ transplants but could potentially receive it by a blood transfusion. For those transplant recipients who are CMV negative but receive a CMV positive organ it is called a mismatch.  Extra precautions need to be taken to avoid complications.  The recipient will be exposed to CMV in an immune compromised state.  The transplant community feels there are more benefits to transplant a CMV positive organ to a non-positive patient than risk because organs are so rare. Organ transplant candidates have a lot more chance dying while waiting for an organ than dying from CMV itself.  This is why it is done on a daily basis in the country. 


An active CMV infection is hard to diagnose without the blood test. The symptoms, not always obvious, are very similar to anything that a transplanted patient can experience every once in a while. It could be fever, extreme fatigue and general ill feeling. The only way to know for sure if there is a CMV infection is by doing blood test or sending specimen from intestine or lungs to the labs.


CMV infection can’t be treated with antibiotics because it is a virus. An antiviral drug is needed. The drug of choice is Valcyte or Valgancyclovir who prevents viral cells from multiplying in your body. It will not cure CMV but will control it. The major problem is the cost. It is very expensive with a price tag of at least $2,500 a month without insurance. Fortunately an assistance program is offered for qualified patients by Genentech who is the maker of Valcyte.  It is also good to know that most immediate organ transplant patients are sent home with Valgancyclovir regardless of their infection status. So, don’t be surprise if you have it on your discharge medications list! The reason behind the mass prescription of this drug is that CMV infection is an easily avoidable major complication of transplantation.  If patients show no sign of CMV complication 6-12 months post transplant, the drug is usually stopped.  Routine blood tests need to be done on a regular basis to monitor the virus.  

Post-transplant anti-rejection drugs and the sun can give you skin cancer

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“Protect your skin” should not be an advice taken lightly for transplant patients.  It is especially true for bald men.  Skin cancer is a major problem after organ transplant. The longer a patient lives the higher the incidence is. Since transplant patients are living longer than ever before, we are seeing more skin cancer but sometimes it hits as early as during the first year. People, it is not a joke when your doctors or transplant coordinators warn you of using precautions under the sun.  Some studies also show heart and kidney transplant recipients being more at risk than the other organs. The reasons remain unknown at this moment. Organ transplant patients have up to 100-fold higher risk of getting any type of skin cancer than the general population.

Types of Skin Cancer

The one kind of skin cancer we see frequently in organ transplant patients is squamous cell carcinoma (SCC). If caught early (before it spreads) and treated aggressively, it usually causes no major problem. We see SCC appear usually in the face or on the arms and it looks like a benign red spot at first. It looks like a small red ulcer and grows slowly. Transplant recipients are strongly advised to start seeing a dermatologist (skin doctor) at their one year anniversary with yearly or as needed follow-ups. Patient education is a big part to prevent skin cancer from developing and/or getting out of control. Any skin changes or discoloration should be reported immediately to your transplant doctor.

Your transplant team should also be informed of any new skin cancer diagnosed and treated by your dermatologist because a change in your immunosuppressant (anti-rejection drugs) may be necessary. Just as a reminder, your anti-rejection drugs weaken your immune system which in turn is not as efficient in destroying the skin cancer cells.  The other two forms of skin cancer that we see less in organ transplant patients is basal cell carcinoma (BCC) and melanoma. Those have respectively 10% and 4% higher incidence for post-transplant patients.

Risk factors

The more pale the skin the more chance for skin cancer.  The older a patient is the more risk for skin cancer too.  So a 65 years old white man with pale skin, bald, 2-3 years post transplant is the typical patient who will end up with most likely a SCC.  It is also important to note that your lifetime exposure to UV also matters.  By example, a patient living in the south who was an outdoors-man will be more at risk then a northerner who never went outside his whole life.  I don’t remember seeing a dark skin person (black, dark Hispanic, etc) ever being diagnosed with a skin cancer.  It is only based on my experience so it could possibly have happened somewhere else.  In short, wherever you live, don’t let your skin burn in the sun.  

Medical Treatment

Several treatment options are available and is usually chosen based on the location, size, occurrence and training of the dermatologist. Sometimes a medical management is warranted and that includes chemotherapy and radiation. Chemo drugs may go from cream to pills and intravenous once again on a case by case basis. The medical therapy of last resort will be to decrease the amount of anti-rejection drugs. The indications for decreasing those medications are if there is metastasis or more than 5 to 10 episodes of cancer per year. It is usually last resort because the transplant doctors are afraid of losing the function of the graft and cause chronic rejection.

Surgical Treatment

There are two main surgical treatment options that I have seen patients get. The first one is called cryosurgery (cryo means cold). The doctor uses a really cold instrument, spray-gun or cotton-tipped applicator at a temperature of-321°F or -196°C, and burns the cancerous cells. It is the treatment of choice when the skin lesions are deemed to be pre-cancerous.

If a more invasive therapy is needed for skin cancer in organ transplant patients then the next step would a surgical excision. The actual technique is called Mohs micrographic surgery. It is named after Dr Frederick Mohs who first developed the technique in the 1930™. Basically, the Mohs procedure trained dermatologist will numb the skin around the area and then cut out what is visible to the eye along with a little bit of healthy tissue. Once that is completed the dermatologist will remove one thin layer at a time and look at it under the microscope to make sure all cancer cells have been removed. It may take several thin cut to get it all. The goal here is to preserve as much healthy tissue as possible to allow healing with less scarring. This procedure seems to have one of the highest cure rates of skin cancer.

For organ transplant patients or anybody else, the main thing to remember is prevention. Use some sunscreen lotion or cover your skin if you don’t want to use the lotion. Monthly skins self-check is recommended at home to notice any change on your skin. If you see something suspicious, don’t hesitate, consult a dermatologist.


Frequently Asked Questions Regarding Organ Donation

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1) Will the donor family have to pay the cost for the organs to be donated?

There is no charge for the donor family during an organ donation process. All costs are covered by the organ procurement organization (OPO). The OPO will get pay by charging the transplant centers who recover the organs. The family will only have to pay the cost of the funeral.

2) Will it be possible to have an open casket at my funeral?

Yes it is possible. Most of the donor can have open casket funeral.

 3) Can the family decide who gets the organs?

Yes and it is called a direct donation. If your family knows someone that needs an organ transplant and is potentially a good match, it can happen. The family will have to inform the organ procurement coordinator at the time of consent and then they see if there is a potential match.

4) If the family does not know anybody waiting for an organ transplant who decides where the organs go?

Nobody, it’s UNOS’s system called DonotNet. DonorNet is a huge database that includes the names and information of every patients waiting for an organ transplant. The ranking is based on blood type, how sick the patient is, location. The computer system will produce a match list based on certain organ criteria. Every organ has different criteria.

5) When will the donor’s heart stop beating?

This happens at the very end of organ donation. Once in the operating room and all the organ recovery teams ready to harvest the organs, the surgeon will apply a clamp on the aorta. This is called the cross-clamp time. This is when everybody starts racing against the clock because the timer has started. The heart has to be pumping blood again within 4 hours. Lungs have up to 6 hours to be ready to go. 12 hours is needed for the liver. Kidneys can be put on a special pump and wait up to 48 hours before transplantation.


If you have more questions feel free to send them and we will respond.

How to Choose your Organ Transplant Center

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It may not be easy to decide where to have your organ transplant with all the options you can find out there. Every hospital promotes itself as the best in its category (you have heard that before, right?!). The patients who live in a large metropolitan area are lucky because they may have access to several hospitals close to home. Kidney transplant is the surgery that is the most performed and has the most widespread locations. Hospitals are competing for potential transplant recipients and the more patients they have on a list, the more chance they have to transplant kidneys. The same applies for any other organs but with a slight variation for lungs and liver. These are the only two organs where patients are given a score more based on how sick they are rather than a priority ranking (first come first serve type).

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 among 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.


Lung Transplant: How Long Will I be Waiting

Is it Time for Kidney Donation with Compensation?

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Some transplantation leaders in the US are starting to push for a compensation system to increase the number of kidney living donation. This is a very ethical debate where both sides of the argument have good points. With a waiting list approaching 90,000 patients hoping to receive a kidney transplant some argue that it is time to implement a compensation system to increase the number of living donation.

For the past 10 years the number of persons waiting for a kidney transplant almost doubled and the actual number of transplantation remained about the same. It has for consequence to dramatically increase the wait time for kidney transplant. Some regions of the US have wait time closing in on 10 years for kidney transplant. Living kidney donation is already legal but is on a voluntary basis and federal laws prohibit any kind of compensation. With treatment of dialysis running in the $70,000 per year per patient some claim money will be saved by transplanting patient faster with the help of a compensation system. Opponents to this system are afraid that people would become kidney donor with the intention of making a quick buck and not thinking about the risks and benefits of the operation.  It also could be an easy way out of debt for some but with unknown long term consequences on finances. Experts against the compensation system also see that as an opportunity for rich to exploit poor and potentially making the system unfair where wealthy patient would bypass patients with less means. In response to this argument the pro-compensation people say that compensation should not be under the form of money but more like free education or other perks like that.

I expect this debate to pick up steam within the next few months as more people are dying everyday while waiting but it will take years before something changes. There are too many variables and questions that need to be answered. What would be the legal age to receive compensation for an organ? Who pays for the compensation? The recipient? The government? The Transplant Center itself? Who will cover the cost of complications for the kidney donors? What should be the total compensation package in $$?  Should it be money or other form? Should deceased donor family be also compensated? Would it open the door to a black market for organs in the US? There are countless of questions that need to be addressed and answered in order to have a fair compensation system in this country. I think it could be possible to have a compensation system fair and equitable as long as the right people are including in the debate. But, it is going to be a long debate and until then the waiting list will keep growing.


Kidney Transplant and Pain Medicine

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An interesting study came out at the American Transplant Congress conference held last month in Philadelphia, Pa. Patients who were chronic opioid (pain medicine) user had a lower graft survival and higher mortality rate after kidney transplant. The study was performed at the University of Michigan with the 1064 patients who received kidney transplant between 2004 and 2008. Of that number, about 10% self-reported as being chronic opioid user (COU) before transplant. Pretransplant chronic opioid use is associated with worse patient survival at 1, 3, and 5 years claims Dr Barrentes who is a clinical transplant fellow at Michigan.  The study was done at their own hospital with their own patients and they reported more graft failure and more death with patients who had a history of pain medicine abuse before transplant. The most used pain medicines were hydrocodone, propoxyphene, oxycodone and tramadol.

At 3 and 5 years after transplant, the death rate chronic opioid user was about twice as much as the one from the non-chronic opioid user. Respectively it was 18% vs 7.5% at 3 years and 21% vs 12% at 5 years. This is a pretty significant difference. The study did not identify the reasons behind the increase number in deaths but was pointing at the fact that patients with chronic pain may have morbidities like diabetes or any vascular conditions causing pain that affects graft and patient survival. Dr Barrentes was suggesting that a better screening could be done before transplant in order to be able to provide more support from social workers or psychologists after the kidney transplant.

The system could be the one to blame for these patients addicted to pain medicines.  Sometimes it is just easier for a physician to sign the prescription for narcotics than trying to understand why a patient is hurting.  This will not change overnight thought.