• Donate Life America – a not-for-profit alliance of national organizations and state teams across the US committed to increasing organ, eye and tissue donation.
• LifeLink Foundation – a non-profit community service organization dedicated to the recovery of life-saving and life-enhancing organs and tissue for transplantation therapy.
• Putting Patients First – an initiative launched by the National Health Council to connect people living with chronic diseases and disabilities to resources and organizations focused on their particular needs.
• Transplant Living Web Site – patient-oriented website providing information on what happens before and after transplant.
• United Network for Organ Sharing (UNOS)  – the private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government
• Organ Procurement and Transplantation Network (OPTN) – The OPTN is a public-private partnership that links all professionals involved in the U.S. organ donation and transplantation system.
• ConsumerAffairs.com Online Pharmacy – This website provides reviews, brand comparisons, and features on various online pharmacies
• UNOS Parent Guide – What Every Parent Needs to Know – A comprehensive guide for parents that have children facing transplantation.
• Pediatric Kidney Transplantation: A Guide for Patients and Families – A guide for parents that have a child facing a kidney transplant. This is also available in Spanish.

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.

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!

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!

Every day we hear in the media and read on the web that so many people are on a waiting list for organ transplants. What do those numbers exactly represent? I will break them down by different organs and compare trends over the last decade so we can see how bad it is or how good it got. The latest data available that I will use are from 2000-2009. I know that we are in 2011 but 2010 almost just finished and it takes time to gather all the statistics.

I will first start with liver transplant:

There were about 16,000 people on the waiting list at the end of

2009 hoping to receive a liver transplant which has been steady for the decade. The number of transplants has increased by about 10 to 15% over that same period of time. A little less than 6,000 patients were lucky enough to receive a new liver in 2009. Just like we will see with kidney transplant, there are much more patients waiting for a liver than there are available organs. This is the reason behind the increase of interest for living donation. There are only a few select transplant centers offering this solution for now. Unfortunately about 2,000 people died while waiting for liver transplantation, which represents about 6 persons a day. This was a slow decrease over ten years though. Liver transplant expected survival rate at 3 years is just above 80% for living donor and slightly below the same mark for deceased donor (traditional donor) and is explained by the fact that living donor recipient are transplanted faster. They are less sick at the time of transplant.

How about kidney transplant?

Kidney is the only organ that has experienced an exponential growth of his waiting list. It went from around 50,000 patients in 2000 to more than 80,000 in 2009. That is a 60% increase over 9 years, which represents about 7% annually. Since the pool of deceased donor has not really increased we can easily understand why living kidney donation has become a popular alternative. Unbelievably, despite this huge increase on the waiting list, there has been about the same number of kidney transplant every year since 2000. The average has been around 14,000 a year (38/day) from 2000 to 2009 with a slight increase towards the decade. About 2,000 people died yearly while waiting. Much less patients, as a percentage, are dying while waiting because dialysis can replace the kidneys for years while someone is waiting for transplantation.

The most interesting statistic is that kidney transplant recipients expected survival rate was different depending if they received the organ form a living or deceased donor. At 3 years after transplant, living donor recipients have a survival rate of 95% while deceased donor enjoyed a survival rate of 88%. The reasons explaining this difference is that living donor recipients get transplanted in months instead of years. They need to be on dialysis for a shorter period of time if at all. Dialysis can take its toll on a body after years of treatment

Let’s talk about lung transplant now:

Lung transplant is the organ that has experience the biggest relative increase in number of transplantation over the decade. It went up by about 50%. In 2000, about 1,000 lung transplant surgeries were performed and in 2009 just above 1,500 took place. In real number it represents 500 more people saved a year. The waiting list dropped significantly during the decade also; it went from a peak of 3,700 patients to just about 2,000 on the list at the end of 2009. About one patient a day dies while waiting (~300/year). Lung transplant recipients have the lowest survival rate at 3 years being at 65%. This is explained by the complexity of managing those patients since the lungs are exposed to the outside world (the air we breathe) and put them at high risk for major infections. Repeated or untreated infection can permanently damage the new lung.

Finally we will breakdown some numbers for heart transplant:

The yearly average number of heart transplant has not really changed during the last 10 years. About 2200 heart transplantations were performed yearly during that time. The main change was seen in the number of patients on the waiting list. This number has fallen over the years for finally slightly going up lately. It went from about 4,000 a year all the way down to 2,700 and now being at about 3,000 candidates waiting for a heart transplant. Better medical management is a reason explaining less patients requiring transplantation. The number of actual heart transplant has been pretty regular hovering around 2,200 surgeries a year which represents 6 per day. There were also less patients dying while waiting which is directly related to the increased use of ventricular assist devices (VAD) also known as mechanical hearts. It keeps patients alive longer and more healthy while waiting for the gift of life. The expected survival rate is also similar to the one of liver transplant patients. About 80% of the heart recipients are still alive 3 years after transplantation.

As you can see, there is a severe shortage of organs. When including all transplant patients, before or after the surgery, there are good chances that you know one of them. It touches closer to home than we think and please do what you would like others to do for you, be an organ donor!

Source: http://www.ustransplant.org/FastFacts.aspx

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

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

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

Source: http://www.medscape.com/viewarticle/744117

With the advance of medicine and better understanding of everything related to transplantation, more patients live longer than ever after transplantation these days. Drugs are better, patient management is more efficient and over the years more and more people have received an organ transplant. The main problem with patients living longer is they may eventually need a kidney transplant. Their native kidneys have been relentlessly exposed to drugs that are hard on them. The transplant drugs, especially prograf and cyclosporine are nephrotoxics and can cause chronic kidney disease in the long run.

For some post transplant patients, a kidney transplant is the only alternative to dialysis.  Some may ask themselves if it is worth it and if their prognosis will be good.  There are some data available but they are kind of limited because the overall number of kidney transplant after any other transplant is not that elevated. Here is what I found as far as number of transplant on a yearly basis from 1998 to 2007.  These include living and deceased donors with an average of 16,000 kidney transplants every year:

• Every year about 10-12% of all kidney transplants are performed on patients that have already received an organ transplant in the past including kidney which represent about 1800 surgeries
• About 2-3% from the above percentage have previously received non-kidney transplant and that means around 350 patients a year.

Those 350 patients include all previous heart, liver, lung, pancreas, intestine transplants who end up having a kidney transplant on a yearly basis. This is a very small pool of transplant recipients to have accurate statistics on. The good is that the survival rate one year after kidney transplant is pretty similar to the first timer. The survival rate is at about 95-96%. Of course there are plenty of variables like age, diagnosis, race, type of kidney (living or deceased donor).

We only see a small dip in the graft (organ) survival and it is only about the graft like it says. What that means is the new kidney may have failed or stopped working after transplant but it does not say if patient is alive or dead. That is most likely due to rejection. When an organ like a kidney fails, more than likely the patient is still alive. A heart, lung or liver that fails is a lot worst because those organs are a lot more important than a kidney and a kidney can be replaced by dialysis. There is no temporary replacement for the other organs. It is retransplant or death unfortunately.So let’s come back to graft survival for kidney transplant. The graft survival is about 2-3 percent lower when the kidney transplant follows any other organ transplant no matter how many years later. We are talking about 94% instead of 96% after one year, so this is a very small difference.

Based on those statistics kidney transplant seems to be a good alternative after any other organ transplant. The challenge is to find a donor since the average wait time is 2-4 years. This is a long time on dialysis! That does not include the 3-4 months the evaluation period takes. The alternative is to have a family member or friend willing to be a Someone can live with one kidney without any problem.

source:www.srtr.org

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