Lung Transplant


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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.  

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.  



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.