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.

Be active

There are plenty of statistics available about organ transplantation; survival per age, survival per organ, survival per sex, etc. The vast majority of the patients are alive after 1 year but are they really doing well? Are they really living their lives to the fullest? What are they doing to live as long as possible? The most successful stories I have witnessed are where the transplant recipients take matter into their own hands and stay active with their lives. They go to rehab 2-3 times a week even though they don’t really need it.  They are still doing the little things that usually people stop doing 3-4 months after the organ transplantation.

Dear organ transplants recipients; you have a duty to honor the person who gave you a second chance in life. You are responsible to take care of that organ for as long as you can. Your transplant team will give you the tools to help you have a successful outcome but most of the hard work is done by you. If you don’t want to do it for the organ donor, do it for your family who has been there with you or just do it for you.

Be compliant

You got to work hard and be compliant every day so your new organ can work as long and as well as possible. Get out of your house and go live your life. You don’t really have an excuse anymore; you can breathe, you can walk upstairs, you don’t have to go to dialysis or your ascites is gone.

Also, be compliant and on top of your medical care. You have only one person to think and it’s you. Your transplant team may have hundreds of patients like you; they don’t have time to babysit you. You should know that labs are drawn every so often especially early on after transplant. You should know that putting on 60 pounds after a transplant won’t help you in the long run. It will make your blood pressure go up, cause sleep apnea and worsen your diabetes.

The only thing I want is for all of you to have successful outcome after organ transplant. Go live your life and stop being anxious about everything. If you can’t work, go volunteer somewhere. Join support group in your area to help other patients who are waiting. Go take that vacation you have been putting off.

Anyway, what I am trying to say is you have a big part to do so your long term outcome is successful. Go out and enjoy yourself. You did not get a transplant so you can watch TV all day long!

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

Idiopathic pulmonary fibrosis (IPF)

Even thought IPF patients have high scores on the waiting, this is still a deadly disease that needs to be taken seriously.
Those patients are not offered a fair chance at transplant because they are often referred to us at the end stage of the disease and their condition deteriorates quickly and disqualifies them for transplants.
One of the biggest issues is the lack of knowledge and misconceptions from physicians in the community. The truth is: patients with IPF should be referred as early as when they receive their diagnosis.

Why?

IPF has no cure other than a transplant, prognosis is generally poor.  The median survival after diagnostic is only 2-3 years. Quality of life is far from being perfect.  Patients are given a death sentence without any hope.

However, there is hope!

Reasons to start lung transplant evaluations sooner:

1- It allows the transplant team to begin a complete evaluation without rushing the patient and
caregivers.  Evaluation is 3-4 full days of testing and this can be very stressful if done in a row.

2-It allows plenty of time to address medical/surgical/social issues during work up.

3-It gives transplant centers more time to monitor the patient for compliance

Specific example: an IPF patient already on 4-6 L/min and needed a stent in his heart during work up heart cath.  Unfortunately, he could not be listed right away due to the high risk of bleeding and clogging the stent.

4- It gives more time for patients and caregivers to make arrangements for the post-transplant period.

5- Post lung transplant outcomes are better if the patient was listed and transplanted before getting too sick

IPF is very stressful for the body but transplants are even more stressful.   You other organs need to be a good health in order to make it.

Obesity has become an epidemic in the US during the last decades and transplant patients are not immune from that issue. This major health problem shortens the life of many Americans (Canadians too) due to its complications.  If you are an organ transplant patient, you are playing with fire. According to the World Health Organization (WHO) website, overweight and obesity are defined as abnormal or excessive fat accumulation that may impair health. More precisely overweight is described as having a BMI of more than 25 and you are considered obese if your Body Mass Index is above 30. BMI is defined as a person’s weight in kilograms divided by the square of his height in meters (kg/m²).  For all the patients needing an organ transplant, most transplant centers will not consider you if your BMI is over 35 and some even have a cut off of 32.  

Quick Facts about Overweight and Obesity

• • Fifth leading risk for global deaths
  • 2.8 million adults die each year from being obese or overweight
  • Higher risk for diabetes
  • Higher risk for heart disease
  • Higher risk for cancer

Risk for Transplant Recipients

Diabetes

As a transplant recipient you are already at risk for developing diabetes with the use of transplant drugs. By adding some extra pounds, diabetes will not be a risk anymore, it will be reality.  Diabetes increases your risk of infection, increase your risk of kidney disease along with heart disease. If you are a kidney transplant patient you really don’t need this problem. Diabetes causes nerves problems (neuropathy) in the long run just like prednisone does, which most of the patients are taking. So you risk are doubled!

Hypertension

One of the side effects of organ transplantation induced by the medication is hypertension (high blood pressure). Obesity is also an important risk factor for hypertension. Long term hypertension could cause kidney disease and potentially send a renal transplant patient back on dialysis. Strokes are also a major complication of uncontrolled high blood pressure. Most of the deceased organ donors die of stroke due to hypertension.

Osteoporosis

Osteoporosis is a condition where the bones are losing important minerals and getting thinner. Once again, feels like I am repeating myself here but it is what it is, the organ transplant medication regimen by itself causes osteoporosis. Being obese and sedentary will accelerate the process and make you prone to bone fractures.

How to Prevent

It is funny when we are seeing patients in clinic and they gained 30 pounds within the last 6 months. The doctor asked them to lose weight and they look at him and say something like: Doctor, I have tried everything to lose weight, I don’t understand. Then later you see the same patient with a sugary drink. It is my opinion that transplant centers should do a better of educating patients by hiring more dietitians and offering mandatory diet classes. Everybody would win from that. The patient would be healthier and preserve the life of their new organ. The transplant centers would have better stats by keeping its patients alive longer. The end results would be more people getting transplantation because of less organ failure, especially with kidneys. Let’s eat less and move more!

There are a lot of things that need to be looked at when reviewing an offer. We just don’t give an organ to somebody because they are the first one on the list. The size is a very important matter. Would you put a lawnmower engine in a big truck? I didn’t think so. Neither will the opposite work.  It is the same thing with humans.  The size has to be right or really similar. The same rule applies for lung, heart, liver or kidney transplant. For lung transplant it may be even trickier because the doctor has to account for the disease.  Some disease, like pulmonary fibrosis, kind of makes the lungs shrink so smaller lungs are needed.  Other disease, like chronic obstructive pulmonary disease (COPD) makes the chest cavity larger so bigger lungs can fit. It is always up to the surgeon to make the final call since he is the one putting them in.

The physician also has to review the social and medical history of the donor along with some test results (Xray, echocardiography, blood work, etc). Once everything seems to be a good match, the organ offer is officially accepted by the physician.  This is when it really gets my adrenaline pumping as a transplant coordinator because I do the rest (minus doing the surgery¦ you would not want that).  It becomes a race against the clock to call the patient in (aka recipient) and contact everybody else in the hospital that helps make the transplant happens. It goes from registering the patient with admission, informing the blood bank for the anticipated need, the hospital bed coordinator so we can find

a bed and most importantly the operating room. The OR charge nurse gets really mad if she happens to learn about the transplant before you officially call!  I hear sometimes: Were you gonna call me today?  You just have to play

the game and be nice (-:. I have to call a million people and a million people are calling me!  Everything is worth it thought because we are doing it to save a patients life.

It is 2 am on a Tuesday morning and then I hear my cell phone go off.  I ask myself Who the hell is calling me at this time of the night?  A few seconds later, when my brain finally wakes up and I look at the caller ID that shows UNOS.  This is when I remember that I am on call and start fumbling the phone.  Just before my voicemail kicks in, I answer the phone and hear that recorded message informing me that an organ donor has become available for some patients at our center. This is when I fully wake up because if I go back to sleep, I can get in trouble I need to get up and review the offer (this is how we say that). This type of call is random and can happen anytime of the day or the night.  It is still, to this day, a lot of excitement.

This is how every single transplant center in the country gets notified when an organ becomes available.  Someone on call will receive an automated message on a cellphone from UNOS informing them of the availability of an organ.  Some hospitals have a nurse on call while others have a physician.  It does not really matter who received the call because everything goes through the attending physician.  It just depends on hospital policy.

Some organs are bad quality, like lungs having pneumonia or a heart with an history of coronary artery disease.  Those get turned down.  When it gets really stimulating, it is when the organ matches to one of your patient.  You know, as a transplant coordinator, that if the donor is of good quality, your patient will get transplanted within the next 12 hours or so. Yes, 12 hours because from start to finish this is about what it takes to work a transplant from the time you get the call until the organ arrives at the hospital.  A lot needs to happen before we say mission accomplished and go back to bed.

Where should I have my lung transplant? How long am I gonna wait for my kidney transplant? How long am I going to live after my heart transplant? Who does the most liver transplant? Those questions are asked by pretty much every patients waiting for organ transplantation. If you live in a major US city you may have the choice to pick your transplant center just like choosing a dentist. On the other hand if you live more in a remote area, options may be limited depending how far you are willing to temporarily relocate. Some patients will travel several hundred miles so they can be treated by the best transplant center possible.

The best centers are not always the ones with the best survival rates though. I can hear some choking now. There is more to it and let me explain myself. It is all about interpretation of the numbers and there are quite a few of them to sort out. Fortunately, those numbers are as accurate as it can be. No transplant center wants to get caught skewing numbers because that could mean the end of their program and loss of reputation. Organ transplantation is the most regulated medical specialty in this country and every center is judged by these statistics. Every transplant center is judged by their “numbers”; government, regulatory agencies and insurance companies look at them and examine them.

These statistics are available at all times to the public but may be a little hard to understand. They are found in the national database Scientific Registry of Transplant Recipients (SRTR) website.

When you get to the SRTR website this is what you will first see (above). The first page has all solid organ (heart, liver, kidney, lung, etc.) lined up. You just have to click on the organ that interests you and then you get a graph similar to this one (below).
It will show you a list of every single hospital in the US performing that specific organ transplant sorted by state alphabetical order. You also have the option to isolate one state at a time for a faster research. That could be easier for you when looking for one particular hospital. On my graph above, I have picked the hospitals performing lung transplant in Ohio. If you look at the dates reported you may find that surprising. This is the most up to date this is going to get. The three-year survival rate is about 3 and half years behind. This is just the way it is. New data should be coming in July as they come out every 6 months.

The “one” number I want you to understand is the patient survival rate at 3 years. In this graph it is anywhere between 61% and 71%. Just underneath that number you can see the “AS EXPECTED” mention. This means they have all meet they expected survival rate. More than 90% of all the transplant centers get that mention. The rest is split by HIGHER THAN EXPECTED and the not so appealing LOWER THAN EXPECTED.

The expected survival rate is calculated based on several factors. The main one being how sick the patients were before they got transplanted. A hospital accepting sicker patients will have a lower expected value which is statistically good for them as less patients are expected to live 3 years. The opposite is also true. You really have to keep that in mind when looking at survival rate. The key element is to see if they have met their expected value. If a transplant hospital constantly gets a “LOWER THAN EXPECTED” value, they may be forced to close by the government as their outcomes are not good enough.
Even though they just show the 3-year survival rate for organ transplant in the patient friendly graph, there is 1 month and 1 year survival rates that are important too. Out of these three important stats, the long term survival is more significant and more in line of what patients want to know anyway. This is why the 3-year value is a significant data for the population. Those statistics are helpful but you have to keep in mind that they are at least 3 years old.

A transplant center may have gotten worst or better since then and that will not be reflected any time soon. Another important point to is the fact there is no discrimination about a death reported. You can have a patient that never had any complication after organ transplant until the day before his 3 years anniversary and then die in a car accident. That death will go against the hospital just like the one of a patient who dies from complication since surgery at one year. A death is a death, that’s it.

The only way to know how these hospitals have been doing lately is to dig more in the SRTR website and you can find the 1-month and 1-year survival rates that are no more than 2 years out. All other kinds of data are also available. You can compare everything by race, sex, disease and it can be time consuming. You will need a lot of patience but it could be worth it. You are talking about your life here!