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

The first question that comes into people’s mind when they consider organ transplant is how long they will have to wait. There are so many factors affecting the wait time that it is very hard to say. For lung transplant, the main ones are type of disease, patient”s size and the transplant center itself. Also lung is the organ with the one of lowest wait time in organ transplant. Relatively less people are waiting for lungs versus the number of available organs compare with kidney or liver.

The way lungs are allocated is by a complicated calculation of different data from the patient. The number, or score, that the system gives after putting all the data in is called Lung Allocation Score (LAS). The patients are ranked by LAS score with the highest number being at the top. Those data are entered in the UNOS™ website by the transplant coordinator and they include the amount of oxygen used, some pressure in the heart, saturation, etc. The number one factor that affects the score is the disease. Some disease like idiopathic pulmonary fibrosis (IPF) will be giving more points than chronic pulmonary obstructive disease (COPD). Patients with IPF are clinically sicker than COPD and their condition can get worst as quickly as overnight. COPD is more about quality of life and is a more stable disease while many can live years without lung transplant.

Another very important factor in determining how long someone will have to wait is the size (height and weight) of the organ transplant candidate. A really small or very tall patient will most likely increase the wait time as few donors meet those dimensions.  Being too small I think is worst than too tall. A very short adult patient may need lungs from a child or small teen but they will have to compete with pediatric patients who have priority on pediatrics organs. It is very hard to transplant a very small adult but with a little luck it can happen.

One more very important factor that you can’t really find in the books anywhere is how aggressive the lung transplant program is in pursuing lungs that other centers would turn down. Some pulmonologists will turn down lungs that are less than perfect without trying to improve them. It is important to mention that the lungs are the most fragile organs from the donor. Good lungs can turn bad very quickly if the donor is not managed properly. The OPO coordinator has a very important job to do in maintaining the quality of the lungs or to improve them. Lungs are susceptible to fluid overload and infection for the most part.  Detailed attention is needed to keep the lungs fit for transplantation. Some transplant centers don’t bother in trying to salvage lungs. It is worth giving it a shot in a context of shortage of organs and it directly results in more lungs available for the more aggressive hospitals. It happened to me more than once after giving a first look at a lung offer from UNOS, I was certain we would decline due to bad quality. With a good physician giving the right orders about medication and making the perfect adjustment on the breathing machine, the lungs got much better and the patient received his lung transplant.

The average wait time for a busy and proactive transplant center is about 3 months spent on the list for lung transplant. Some will have their organ transplant as early as the same week they were put on the list while others will wait on the list for months if not years. It is very unpredictable but in general it will be faster than the other organs like heart, kidney and liver. Also there is some period of the year when we received very few organ offers and none of them are good and other time where it is the opposite. The number of organ offer is pretty much the only thing that we can’t control at the transplant center level. If all the stars are aligned for you, you can get your transplant rather quickly!

Several patients don’t want to be operated on at night for fear that more mistakes happen due to fatigue and stress. If you are a lung or heart transplant patient you don’t have to worry anymore. A study that came out in the Journal of the American Medical Association (AMA) is proving that there is no more risk at night than daytime for organ transplant surgery. It suggests the reason being that the transplant team is used to it and has found ways to cope with lack of sleep and the pressure of doing transplant surgery.

I have seen quite a few surgeons working at night and let me tell you when they are in the operating room, it does not matter what time it is, the time stop and they just perform. Trust me though, if they have to choose between 2 pm and 2am the surgeons would all pick 2pm for obvious reasons.

The study was done over 10 years involving more than 27,000 patients who underwent thoracic organ transplantation (heart or lungs) in the US. There was no difference in term of survival one year after transplant. The only hiccup for night time surgery was a slightly increased incidence of airway dehiscence. This is explained by having an air leak where the news lungs and patient’s bronchus are stapled together. It can happen because a staple failed, wound healing delay, etc and usually requires going back to the operating room.

The bottom line is when a thoracic surgeon signs up for organ transplant surgery; they expect to be working at anytime of the day or night. They are mentally prepared for it and just do what needs to be done.

Source: http://health.msn.com/health-topics/transplant-surgery-no-riskier-at-night-study

Lung transplant surgery can be a mean to improve quality of life for some but is certainly a life-saver procedure for others. It just depends on the disease of the patients (COPD, pulmonary fibrosis, cystic fibrosis, etc). When someone’s disease is so advanced that they can’t breathe, there is nothing to replace the lungs unlike dialysis for failing kidneys or a mechanical heart for a weak heart. Unfortunately, lung transplant comes with a relatively high risk of short term and long term complications compared with other organs.

The main reason behind that is the lung is the only organ exposed to the outside world. The liver and kidneys are deep inside the abdominal cavity, no worry there. The heart, despite being attached to the lungs, is not exposed like them. It is well protected inside the chest. Basically, what I mean is the lungs make contact with the air we breathe plus everything else found in the ambient air. It could be pollutants, irritants, mold spores or whatever else found in the air where you are at. This is why it is so critical for a lung transplant recipient to be aware of his surrounding and not be at a place that they should not be. Every dusty area or known to be dusty task (sanding, house cleaning, even gardening, etc) are usually prohibited or discouraged by your transplant team. When in doubt with an activity or an area, ask your lung transplant team. Listen to them; they know what to do to help you stay as healthy as possible!

Every single respiratory symptom reported by a patient is usually taken seriously by the transplant team. This is especially true during the winter when it is flu season. Any benign respiratory virus for the general population could potentially be real bad for lung transplant patients. The easiest way we can identify the kind of virus, if any, is to swab the patients nose. It is not the best experience for the patient but it can save a lot of trouble (if you don’t know what it is, its like sticking a Q-tips 2-3 inches in each nostrils and then swab…). Usually it makes the eyes teary!

We have caught some cases of influenza last winter that we were able to successfully treat. I am just afraid that a same patient will not call us in the future if they have the same symptoms because they are afraid of the nasal swab. Please don’t do that. That could be a mistake. You went through lung transplant surgery and its aftermath. A nasal swab should be a walk in the breeze¦

This was a very quick overview of lung transplant complications. The goal was to make you understand you are always at risk of breathing something potentially bad but by being informed you can be more careful without becoming paranoiac. Follow your lung transplant team advices; they are the expert to keep you out of trouble!

The cow milk of every transplant center is Medicare.  This is the insurance company you don’t want to disappoint because if you run a transplant program with bad outcomes, they can close you down and quickly.  This is what happened to Temple University’s Hospital in Philadelphia, Pa.  The main reasons they were cited for was too many grafts failure and too many death on their lung transplant program during the first year after surgery.  When a graft failure is documented it is either because the patient has been re-transplanted or is dead. Every transplant center is allowed to have patients die after transplant.

It is just the way it is; a lot of things can go bad during a transplant surgery.  But it can’t go that bad and this what the government is going after.  Another thing they were cited for was a low number of heart transplants. Medicare requires at least 10 of those per year for every organ.  During the last year available on the SRTR (government-funded database) website which ended in June 2010, only 3 heart transplants were performed. The good news is they all made it at least one year!  The worst thing that happens after Medicare drops a hospital off is the private insurance companies leaving.  They tend to follow Medicare. No money, no candy! Big transplant centers need Medicare because those patients represent about 80% of the transplant candidates.  In conclusion, Medicare is very important and so are the outcomes.

The source can be found at this link

If you tell an organ transplant patient there will be no need for immunosuppressant drugs anymore without a risk for rejection, what would be the reaction?  I think there would be a suspicious reaction at first and then a big sigh of relief.  Nobody else is better informed than these patients regarding the risks and side effects of anti-rejection therapy.  This is the only way known to transplant specialists to keep the graft working and the patient alive.  Hope is on the way.  Not one, not two but three studies came out this week in the Science Translational Medicine suggesting that one day it could be possible.

One of the study is led by Britains Oxford University Andrew Bushell and calls for retraining or reprogramming  the patient owns Treg-cells (regulatory T-cells: those white blood cells” role is to suppress our own immune system response as needed).  The goal would be for those T-cells to recognize the transplanted organ as friendly instead of an intruder like it is now.  If that can successfully be done in human (it has been accomplish with mice in the research), the regulatory T-cells would do the current job of the anti-rejection drugs.  The patients” own regulatory (AKA suppressor) T-cells would prevent the body’s immune system from attacking the transplanted organ and as a result will decrease the risk of rejection.

Basically, those T-cells are like the police of the immune system; they keep the other kind of white blood cells under control so they don’t attack continuously the body.  They regularize the immune system just like the name defines it.  That would potentially eliminate the need for powerful drugs like neoral, prograf, rapamune and cellcept to name a few in the long run.  In the immediate transplant phase, those drugs are still expected to be given as the T-cells are reprogrammed in a lab.

That study was conducted on mice in a lab we are years away from testing that on humans but it is a promising start.  This would be a major breakthrough in improving graft and patient survival.   By having less rejection and longer graft survival, more people could be transplanted with the same number of organs available.  The reason being less people needing a second transplant.  Also, there should be less complications caused by the current drugs like kidney failure and skin cancer by example.  Those two complications are very common and debilitating.  Their respective treatments, dialysis and chemotherapy,  can be very expensive too.

Another important point in the study was the fact that the regulatory T-cells would still be able to recognize infections and cancer as a threat to the body.  Therefore, they will get out of the way of the attacking white blood cells.  The other good news is it could also benefits the patients with autoimmune disease who are taking medications similar to the transplant patients to weaken their immune system.

In short, this could be a major breakthrough for the transplant community and their patients if it ever becomes available at the bedside to treat real people.

Source:http://www.reuters.com/article/2011/05/18/transplants-cells-idUSLDE74H09B20110518

The waiting list for a kidney transplant is anywhere from 2 to 4 years depending on where you live, your blood type and other factors like compatibility and your size.  The list has about 80,000 names on it, and 11 of them die waiting, daily, which represents around 4,000 lives per year that are not saved.

I found an interesting article in a magazine called The Atlantic.  Its author, Conor Friedersdorf, suggests that the federal government should reform its laws regarding organ donations based on the fact that more and more Americans are going abroad to find a kidney.  One of the popular destinations is Peru.  Of course, this is a poor country and who really knows about the quality of the healthcare system.  People in those countries are willing to give one of their kidneys in exchange for some money so they have a chance to live a decent life.  There are risks to both the recipient and donor when these surgeries are performed in third world countries.  Who knows if they really do a good job in looking for compatibility and transmissible disease the donor might have.

Some people are willing to take the risk just because they are tired of living on dialysis (the alternative to kidney transplant).  Dialysis has its own risks: catheter and blood infection can all lead to death.  Who wants to spend half of his life in a dialysis center anyway?

Like I mentioned earlier, it takes years to get a kidney transplant for most of the people waiting on the list unless they can find a living donor.  Under US laws, it is illegal to pay someone for an organ or receive money from organ donation.  If transplant centers were allowed to give good money, like $30,000 or more per kidney, to the donor, I do think there would be a lot of people willing to give organs.  That could be a way to trim the waiting list pretty quickly.

I am afraid that if this whole process is not done the right way it could lead to some ethical and social problems.  One of those is would rich be allowed to bypass poor patients by offering extra incentives?  Should only hospitals be allowed to give money to the donors?  Would the donor and recipient be paired on a first come first serve basis or the recipient will be able to handpick his kidney?  Would there be good or bad reasons to accept a living donor candidate based on the motive?

Those all are questions that a panel would have to answer before moving forward.  I don’t think the living donor transplant centers are immediately ready to handle the surplus of work.  In a matter of a few months, one could see an increased of several thousand potential donors per hospital.  You need staff and infrastructure to process and screen all those kidney donors efficiently and safely.  A well-known hospital in the state of Pennsylvania temporarily shut down his living donor program last week because a kidney transplant recipient contracted hepatitis C with the new organ.

Even if the government allows people to get money for their organ, which I would not have a problem with, it will take several months or years to catch up to the list of 80,000 people waiting for a new kidney.  You just can’t safely screen and do surgery on that many people overnight.

Source: http://www.theatlantic.com/politics/archive/2011/05/apathy-causes-kidney-patients-to-die-needlessly/238840/

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