Heart Transplants Resources

Heart Transplants Resources

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Could Pulmonary Fibrosis finally be Treated?

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Doctors from the University of Alabama have discovered that the diabetes drug metformin (AKA glucophage in Canada) has been accelerating the reversal of pulmonary fibrosis in mice.  Pulmonary fibrosis is a disease that forms scar tissue on the lungs and usually progresses to death.  If this were to work on humans, this will be a major discovery and could finally give hope to thousands of patients suffering from the disease.  The life expectancy is 3-5 years after a diagnosis of pulmonary fibrosis.  Some patients might actually be able to delay or avoid a lung transplant after all.  Up to today, nothing has been known to work in reversing pulmonary fibrosis.  The drugs Perfenidone and Nintedanib are the only two FDA approved for PF but they only slow down the progression of the disease.  They don’t actually reverse it.  Now the big question:  Is there a doctor somewhere already using metformin on pulmonary fibrosis patients??


Below was written in 2015 but the research article dates from 2011

This is what researchers at Duke University in North Carolina are suggesting. They simply need to find a way to cut off the supply of sugar to the invasive cells that create fibrosis in the lungs. Idiopathic pulmonary fibrosis (IPF), just like its name mentions it, has no known cause. But the pulmonologists do know one thing though: it kills people. On average, after a diagnosis of IPF is given, the survival rate is only 3 years.

The lungs are kind of self-destructing themselves by forming something similar to scar tissue. Scar tissue is OK for a cut on an arm or a leg but will make the lungs stiffer progressively destroying the lung function to the point of making it impossible for someone to breathe. This is a non-reversible disease process and the only treatment option at this time in the US is lung transplant. IPF patients on a lung transplant waiting list have usually the highest score of all other candidates due to the acuity of their illness.

This disease affects 100,000 people in the US every year and a relatively low number of them received a lung transplant. Some patients are just too old or too sick while others, unfortunately, get referred to a transplant center too late. If you know someone with idiopathic pulmonary fibrosis, it may be good to suggest them a lung transplant

Source: Duke Researchers learn how lung fibrosis begins and could be treated

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.



Why am I a lung transplant coordinator?

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We, transplant coordinators, sign up for this with one goal: make a difference in somebody’s life. As a lung transplant coordinator I have the opportunity to make a difference with patients who have a deadly disease that a lot of you are familiar with that is called pulmonary fibrosis. As a lone coordinator of a new lung transplant program I have had the opportunity to do it all. I was the one making initial contact with a sick patient referred to us, walk them through the whole process, brake the news they were approved for transplant, place them on the waitlist and then call them once a donor was available. There is not a better feeling than offering hope to someone who is short of breath by just talking on the phone. A lot of work needs to be done by the transplant coordinator and also the patients/caregivers to get there. The reward is the actual transplant but there is still a lot of work to be done after the surgery. I have seen patients go through ups and downs when recovering. The proudest moment for me as a lung transplant coordinator is when someone finally rings that bell at discharge time. The patient is finally going home with his new lungs and a second chance at life. The patient and family is forever grateful but we are also grateful towards the patient who at the end of the day is the one who trusted us with their life. The next big milestone after that is the one year anniversary. To see the patient looking like a “normal” person again is very rewarding.  All the pain, suffering, tears shedding that occurred following the transplant is now forgotten: it was all worth it.   The patient is enjoying life again and making plans for travel or whatever else they like about being alive.  


If I had to give you one advice it would be to seek out a medical opinion at a lung transplant center especially if your treating physician is not doing it for you. Only a lung transplant center would be qualified to tell you if you meet the criteria to be a lung transplant candidate.

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.  

I unsigned my organ donation card (and still want to be a donor). Here’s why.

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                 I have been working in transplantation for several years now and we are always grateful for the donors and their family.   Without them some people could not be given a second chance at life.  As a transplant professional there is nothing better than seeing the progression of a patient from when they first come to the office for consultation all the way to 3-6 months after the organ transplant.  They go from being the sickest and hopeless they personally have been to finally receiving hope and then being the most grateful people around with their improved quality of life.  The after transplant quality of life that the transplant recipients experience make it all worth the hard work to get there. 

                A few years ago I did sign my organ donation card thinking it was more of a way to notify my loved ones of my wishes if I ever become brain dead than what it actually is; a legally binding contract.  People in my family also signed it because we all believe in the cause.  Why not help others in need with good functioning heart, liver, lungs and kidneys  if my brain is dead?  This seems to be a no-brainer.  This was until I really found out about the real meaning of “signing your card”.

                The Uniform Anatomical Gift Act (UAGA)was first passed by Congress in 1968 but was revised in 1987.  The revision was made to address one specific need:  many organs were not used for transplants due to family not consenting on behalf on their loved one.  In a way, the 1987 UAGA revision makes it now “illegal” to request consent to the next of kin for organ recovery.  If a brain dead patient had signed its card, the organs can be used for transplant without asking anybody’s permission.  Not even the spouse or the mother.   It also provides immunity to the medical professionals in the event they use the organs without the family consent despite the donor card signature as long as it was done in good faith. 

                The law has no penalty attached to it in case of violation so it is mostly used as a guideline but does offer real protection against a lawsuit for the medical professionals.  Every state has adopted a slightly different version of the law.  Some simply require a box to be checked at drivers license renewal time while other states require 2 witnesses to the potential organ donor signature. 

                How is this law applied in the real world??

                Most organ procurement organizations (OPO) will still go for the donor family’s permission to recover the organs for transplant whether or not the card was signed.  The rest of the OPOs will not obtained consent from the family in cases where the donor had signed the card and the family refuses donation.  They will use the organs as the law allow them to do it.  Most OPO and the whole transplant world would not want to see such a potential PR nightmare(going against the family’s wishes)  and have it “advertized” on national TV.  That would be bad publicity.  This is why most OPO will still obtain the next of kin’s consent. 

                I have not done a poll to test people’s knowledge about the significance of signing the card but I am sure there is a good portion of volunteer donors who don’t really know the full implication.  I did not know at the time, I found out later.  I realized my wife may not have control on when to let me go should I be diagnosed brain dead.  My wife knows my wishes of wanting to be an organ donor but I want her to be able to make the decision if that time comes.  So, I unsigned my card to give back the power to my family instead of the government. 

P.S. In no way am I suggesting different quality of care for a potential organ donor and non-donor after a  tragic event.  It is more about retaining control of the decision by the family.  OPO and governments should better communicate the full implication of signing the card and potential donors should also talk with their family to express their wishes. 

New lung allocations rules may affect your wait time (This could be good or bad news for you)

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What is it about?

Effective November 24th 2017, the Organ Procurement and Transplantation Network (OPTN),under a directive from the U.S. Department of Health and Human Services(HHS) changed its lung allocation policy.   The lungs used to be allocated to the transplant center within the same Organ Procurement Organization (OPO) territory.  Since OPO territory are arbitrarily established, a sicker recipient who lives much closer to a donor but outside of the OPO territory might have lower priority than a less sick patient who lives in the donor’s OPO territory.  OPOs everywhere in the US have predetermined territory.

Why were those sicker patients not prioritized??

 It is because they were not in the same OPO.  With the new rules, the priority goes to any recipients for which their transplant center is located within 250 nautical miles of the donor hospital regardless her their OPO territory.  The Lung Allocation Score (LAS) still drives the ranking of those patients making the first cut.  Basically, lungs are now being offered to the sickest candidates (highest need) in a 250 nautical miles radius from the donor hospital.  Any transplant center within that 250 miles radius will have their lung patients on the initial match list offer regardless of OPO and state location.

What will the impact be?

The impact of this change will not be known until at least next year when the OPTN will review the data.  We can assume the patients with the highest lung allocation score (LAS) will be transplanted faster than before the new rule.  Those will low score will most likely have to wait even longer.  States with only one lung transplant center and single OPO like Alabama and Oklahoma won’t automatically have priority at the top of the lung donor list of their in-state OPO.  If the donor is located within 250 nautical miles (287 miles) of an out of state transplant center, all those patients will also be at the top of the list.  This change in lung allocation will most likely promote an incentive in transplanting sicker patients which is what it should be.  

What about the other organs?

Liver allocation also has a similar policy but slightly different.  Kidneys and hearts are still allocated mostly based on OPO’s location.   Once all organs are allocated by distance instead of OPO location, it might interesting to watch some OPO realignment or merger as their arbitrary territory would become obsolete.  In the meantime if you have questions regarding the effect on how it affects you, please ask your transplant coordinator.  


source: https://optn.transplant.hrsa.gov/news/policy-modification-to-lung-distribution-sequence/

The Truth About Organ Donation

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There are still a lot of myths about organ donation and that could explain why millions of people have not signed their state registry yet (in this blog I will mostly talk about deceased donors because living donor is much different). Education is the key solution to achieve higher success and it is just hard to reach everybody. The reason we are signing the registry is to become a deceased organ donor if we eventually become brain death. This condition, brain death, is used as a legal definition in many countries. It is irreversible and is usually caused by a lack of oxygen to the brain AKA brain anoxic injury. Before declaring someone brain dead, physicians will perform several tests so they can apply that diagnosis to the patient. They mainly look for reflexes like checking if a patient will breathe on his own after unplugging the breathing machine and will also look at pupils reactions (or lack of reaction) with light.

One of the main fears is that people are scared that their doctor will give up on them faster because there are potentially good organ donors. This is not true at all. If you knew how most physicians hate to lose patients, you would understand that they will do everything for you.  That could be true if they were receiving money for their patients organs but that is illegal in the US and hopefully would be unethical among all the physicians.  A transplant physician can’t be treating a potential donor as this will cause a major conflict of interest.

Once a patient is declared brain dead, the Organ Procurement Organization (OPO: regional organism mandated by the government to manage donors) come into play and will make contact with the family. If the potential donor has signed the registry, they don’t have to ask for permission to the family, the patient becomes automatically a donor. This is why it is important to talk to your loved ones about your intention regarding becoming an organ donor. SIGNING YOUR ORGAN DONATION CARD IS LEGALLY BINDING.

The coordinator from the OPO will have to interview the family or friends in order to get the most accurate social and medical history possible so transplant centers can make an informed decision about the quality of the organs for their recipients. The extent of the truth about a medical/social history for a donor is not known for the simple reason that who really knows you well enough to be able to tell everything to the coordinator. This is why blood tests are performed. It is to look for transmissible diseases like hepatitis B and HIV.  All the information collected by the OPO will be made available to the transplant centers.  Rest assure, nothing that could help identify a donor will be shared with the transplant recipient or its family.  Patient confidentiality is the main element of trust for the system to work.  Once a transplant center reviews a donor and is satisfied about the match, the transplant can proceed hopefully for a successful outcome.

In a different post I will tell you why I unsigned my donation card despite wanting to become a donor if I were to become brain dead.