18
Jan
2018
The answer is YES!! if you don’t have health insurance or can’t fund raise a lot of money. For everybody else with insurance you don’t, not even close. A lot of people I talk to think you need to be at least in the middle class with private insurance to qualify for organ transplant. This is a myth. Over 80% of the transplant recipients have Medicare or Medicaid as a primary insurance and have no job and live with social security. As a matter of fact, a transplant center that does not have a contract with Medicare for organ transplant has no chance of running a large program. Medicare is where the money is for the hospitals that do transplants so yes government insurance is good enough. Most of the patients I follow as a transplant coordinator are on some kind of patient’s assistance because they have limited income and can’t pay for everything, especially the most expensive drugs. Some of this assistance is provided by drug companies themselves and some by charitable organizations. If you ask your transplant or financial coordinator they should be able to assist. Yourself, as a patient or caregiver can actually apply directly.
The majority of patients waiting for kidney transplant is disabled and has Medicare as primary insurance. They have to go to their dialysis treatment three times a week for 4 hours a session. It is very difficult to keep a job that provides insurance in this situation. Most patients are wiped out for the rest of the day after dialysis. They rely on their social security income to make ends meet. They can still qualify to get a kidney transplant when time comes. The average wait time for kidney transplant these days is anywhere between 3 to 5 years. This is why a lot of people are working hard to improve the rate of organ donation because life on dialysis can be miserable.
There are not many people that could pay for their organ transplant surgery cash. The average kidney transplant cost around $500,000 USD without any major complications. A heart-lung transplant is on the most expensive with the price tag being just under $1,000,000 USD.
So, yes it is possible to get an organ transplant if your income is limited and you are disabled because Medicare is the most common insurance. Don’t think that they won’t treat you as good as a private insurance patient because no transplant center wants to lose the lucrative Medicare contract. Your survival is very important for your hospital!
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Frequently Asked Questions Regarding Organ Donation
17
Jan
2018
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.
15
Jan
2018
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!
13
Jan
2018
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
10
Jan
2018
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.
15
Sep
2017
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
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- 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!
4
May
2017
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.
2
Apr
2017
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.
11
May
2013
Nora was an adorable little girl who enjoyed life more than any other kids of her age. In 1997, she was 7 years old when a tragic accident took her life away. Her parents consented to organ donation so she could save several critical young lives through organ transplantation. This was her gift of life. In her honor, her loved ones founded Nora’s Life Gift Foundation in 1998.
According to the website, the Foundation was very active in promoting research for organ failure and organ transplant. The main goal, though, remained charitable contributions. It was in 2001 that the first Nora’s Home opened in Memphis, Tn. It has provided over 25,000 room nights to organ transplant patients and their caregivers who were from out of town.
In 2006, Noras parents moved to Houston, Tx for a professional opportunity. Her parents are both physicians at The Methodist Hospital in Houston Texas Medical Center. Her dad, Dr Osama Gaber is a kidney and pancreas transplant surgeon who is also the Medical director of the Methodist J.C. Walker Transplant Center at The Methodist Hospital. Her mom, Dr Lilian Gaber, is a transplant pathologist also working at The Methodist Hospital.
The goal of Nora’s Life Gift Foundation is to open the same concept in the Texas Medical Center. Patients coming from far away for transplant or follow-ups will have less stress by knowing that Nora Home can help them.
Nora’s Home is not opened yet in Houston. More funds are needed through contributions but at least a property has been secured when an agreement was between the Foundation and The Methodist Hospital in May 2010.
To make a contribution through Nora’s Home website please click the link. Nora’s website
4
Jun
2011
It takes about 2-3 months for an average patient to recover from a solid organ transplantation and be able to say I start feeling great!. The first several weeks after surgery new patients call me, as a transplant coordinator, 2-3 times a week and most of the time it is due to anxiety. After that 3 months threshold, providing everything is good, we barely hear from some of the patients anymore. In a way, it is a good thing because it means they are doing well. When a patient feels great, trouble can find them because they are somehow getting non-compliant to a different degree. Here are the top mistakes that I see on a daily basis that could threaten long term survival.
1. Not having a project
A lot of patients become invalid during the disease process and remain so after the transplant. They end up with a lot of free time while feeling great and have no project whatsoever. The main activity of the day is what leads us to the next mistake: eating. Please find something to do!! Volunteer, school or work.
2. Putting on weight
Sick patients, especially the ones with breathing problems, tend to lose weight because they burn a lot of energy to survive. Once they get a transplant and feel a 100% better, those pounds starts piling on. I have seen as much as 25 pounds a month!! Extra weight increases blood pressure and blood sugar and decrease long term survival because of all the complications associated with obesity.
3. Not checking their vitals sign
Why would I have to keep checking my blood pressure, I feel good? This is a question heard during office visits. Well, because one of your transplant medicines side effects increases your blood pressure. Also carrying those extra pounds will make your BP go up. This is the most common answer I hear from the physicians which is funny because the patients are not expecting someone to frankly tell them they are fat!
4. Not drinking enough water
Anti-rejection medicines are tough for the kidneys. In order to protect them and avoid a kidney transplant down the road, it is very important to stay well hydrated. The best thing our physicians recommend is water. Just plain water. In most of the other drinks you have caffeine that acts like a diuretic and will dehydrate you or sugar who contributes to weight gain and higher blood sugar. Water is the tastiest drink when someone is thirsty.
5. Waiting at the last minute to have their medications refilled
Stay on top of things. You should know when you are getting low on supplies and should order new refills at least 2 weeks ahead of time for mail-in pharmacy or 1 week for local drug store. You don’t want to run out on a thanksgiving week-end. Unfortunately, it does happen. These meds are life-saving so please don’t mess with that. Don”t try to blame your coordinator when you are late!
To be continued
