Wedding Affirms Quality of Life for Face Txp Recipient

Yesterday’s marriage of face transplant recipient Dallas Wiens and 70% burn victim Jamie Nash in Fort Worth, Texas was a triumph of love, medicine and social support.   Five years after he was burned in the Ridglea Baptist Church when the cherry picker he was using to paint the church touched a high power line, he returned to the same church for his vows with the woman he had met in a burn victims support group in Boston, the site of his face transplant.
Reported by the Boston Globe to be both the nation’s first full face transplant, and the world’s first without any rejection, in contrast to the recent sensitized patient (this blogger has no inside information), this face transplant marks the solid establishment of the era of Quality of Life Transplantation. Face, hand, uterus, and larynx transplants are performed to make people’s lives better, not to directly prolong their survival. This is an enormous step forward from the prior fifty year long era of Life Saving Transplantation in which transplants were not optional – done only to salvage the life of the dying person with the luck to be selected and allocated an organ in time.

How have we gotten here – slipped virtually seamlessly into this new era? Evolutionary improvements in the armamentarium of immunosuppressant medications available to prevent +/or reverse rejection, better selection of donor and recipient through changes in tissue typing techniques, and overall improvements in medical/surgical care coalesce to make success predictably attainable in life saving transplantation. Results are so good today that we have created our own supply and demand crisis. So many people with kidney, liver, heart, lung, intestinal failure are suitable candidates for life saving transplants that we cannot offer them all organs – 18 die per day waiting for transplants in the U.S. alone.

That predictability of successful transplantation has empowered surgeons to brazenly perform these Quality of Life transplants, knowing the control of rejection can probably be achieved for their patients. With careful informed consent, people like Dallas Wiens, who said “I miss the sensation of my face and my sense of smell the most” in 2010 (AP 2010), can now have the life transformations they dream of.  Following the first laryngeal transplant in 2001, transplant surgeon Anthony P. Monaco MD, PhD, who had himself undergone laryngeal removal for cancer seven years earlier, wrote in the New England Journal of Medicine that “if I were 40 year old, I would probably consider undergoing the operation myself. For Dallas, who at age 27 can again eat, drink and smell normally (though he is blind), and his bride Jamie, all stars have aligned. May the quality of their married lives together also be the stuff of dreams, as his transplant has been to date.

Sad Deaths Reveal Beauty of Transplantation

Yesterday’s arraignment of Dr. Oleg Davie on manslaughter charges for the liposuction related death of Isel Pineda, a heart transplant recipient, was tragic for a multitude of reasons. Yet, it also reveals the incredible success of heart transplantation from a unique perspective. This woman gained 8 years of additional life through the generous gift of her heart donor, the technical success of the organ recovery and transplant procedures, and the medical magic of immunosuppressant medications that prevented rejection of her replacement heart. And she apparently felt invested enough in her external appearance to invest a substantial amount of money in the liposuction procedure. Wow, what a transplant success story. Sad that it did not continue even longer.

It brings to mind a similar tale of wonder. Larry Hagman , the actor we loved to hate on Dallas, and loved to love on I Dream of Jeannie, lived 17 years with a liver transplant. He resumed acting with extreme success and his death was mourned world-wide despite the fact that he was an alcoholic and had had liver cancer. Transplantation with each of those diagnoses is highly controversial – and he survived 17 years. He certainly proved to be an appropriately selected transplant candidate. Naysayers should take note.

So, death should cause reflection on the content of a person’s life, not only sadness. We will all pass through the same moment. In the case of organ transplant recipients, appreciation of the second portion (or third or fourth!), of life extended through donation and transplantation should be central in our thoughts.

Breathing Lung Device Broadens Transplant Options

Four months of life – good life that includes daily walks several miles long without the oxygen tanks of Fernando Padilla’s past – are attributed to his double lung donor and the lung support device that kept them breathing once they had been removed from that donor. Performed at UCLA in November 2012, this was the first clinical use of the TransMedics Organ Care System (OCS) transport method for lung support between organ recovery and transplantation UCLA news release . Instead of storing the lungs in cold solution, they are kept warm, functional (breathing Oxygen) and supplied with red blood cells. Incredible.

Do the principles sound familiar? They match those achieved by the Oxford liver transplant group who recently successfully transplanted two livers after keeping them on a  liver support device . Not surprisingly there is also an active trial of a heart in a box support device meeting the same needs in heart transplantation.

This is a watershed moment in transplantation. Incessant deaths of potentially salvageable transplant candidates, failure to dramatically increase the number of available deceased donor organs and regulatory pressures to perform only successful transplants are all powerful drivers. Support devices for kidney perfusion are demonstrated to improve outcomes and permit selection of better quality organs based on perfusion parameters kidney support device .  Research efforts to achieve equivalent support for lung, liver and heart transplantation have all reached the clinical bedside within the past year. All remain in the clinical trial stage with encouraging preliminary results. We appear to have real progress in hand.

Should This Kidney Txp Program Close?

Closure of the Miami Valley Hospital Kidney Transplant Program in Dayton, Ohio will alter the face of transplantation in the region – but will it be for the better or not? Whose opinion matters? This is a 43 year old program that has performed more than 900 kidney transplants according to the  Dayton Daily News , and patients have received deceased donor transplants faster there than at surrounding programs, or in the rest of the country. see program specific data reports To insiders, this may reflect better access to good quality organs, in which case the local patients would be disadvantaged with closure of the program. Or, it may mean that transplant surgeons were more aggressive in the types of organs they were willing to use for transplantation. If those organs worked well, the decisions were terrific. If not, then maybe not such good decision making. However, good outcomes also require good follow-up patient care, which takes a transplant “village”. And this may not have been readily available at a fairly small center.

Administration officials indicated that finances are driving the decision to close the program, a very plausible explanation since hospitals generate much more income from liver transplantation – not in this institution’s repertoire dayton daily news 3/19/13 . That is undoubtedly part, not all of the story. Local patients will now have to seek care at more remote transplant centers but will undoubtedly return to their own providers for follow-up. This is the trend in modern transplantation. Transplant at one center with the majority of subsequent care delivered elsewhere. It may be supervised to a greater or lesser degree by phone by coordinators from the primary transplant center. But a not so well known truth is that many patients will never return back to that transplant center, opting instead to receive what proves to be essentially the same quality follow-up care that may have been responsible at least in part for the closure of their own local center.

Which patients are least likely to return for follow-up at the primary center? The least healthcare literate, oldest and least affluent of course. So, closure of a small, local center favors the typical patients in subtle ways that also contribute to their better outcomes with transplantation. Go figure.

Is New Liver Support Device The Answer For Liver Transplant Candidates?

Two liver transplants performed in February 2013 at King’s College Hospital in England are remarkable because each human liver was temporarily supported ex vivo (outside of a human body) by a new support device liver device report . Both livers were kept alive with blood circulating (perfusing) through them at body temperature for the hours between being recovered from the deceased donor and subsequent transplantation into the waiting patients. Currently, a high proportion of organs available for transplantation are declined because of a high fat content (e.g., fatty liver) that literally congeals with the prevailing storage method in icy cold solution. Avoidance of cold with this new device might permit utilization of more of these available fatty livers – a major step towards saving lives.

Today we commonly utilize kidney perfusion devices that have been shown to improve the outcomes of transplants and to reduce the likelihood of transiently requiring dialysis after the transplant, until the organ recovers. In fact, the most commonly used device, the LifePort kidney support device has been on display at MOMA (the Museum of Modern Art) because it is so beautifully designed. With this and other devices, more kidneys of questionable quality are transplanted. We can both extend the time period between procurement and transplantation, and interpret measurements generated from the pump to determine the kidney’s viability. But an equivalent had not been available in liver transplantation.

The bottom line is that we have thus far become aware that the new liver support device from OrganOx appears not to have harmed the two transplant patients or their livers that functioned after being supported with it. The report is that both patients are making excellent progress. Whether or not the potentials for 1) prolongation of transplant time frames and 2) range of usable organs will be fulfilled as well remains to be seen.

Asking FOXNews + Dr. Marc Siegel…….

Dear Dr. Marc Siegel,

Your current report on the tragic case of rabies transmission is right on target except for the use of 2 words. Marc Siegel’s FOXNews report In 2004 donor families formally requested a change of transplant related terminology from the transplantation community in order to honor their loved ones. The editors of the major transplant journals and other leaders in this field have all collaborated to create this appropriate change. Today, we no longer use the term CADAVER, saying DECEASED DONOR. And we do not use the term HARVEST, instead using PROCURE or RECOVER.

Though not included in this report, we also avoid using any term including the word “life” (such as life support) to a person already declared brain dead, opting instead for mechanical or artificial support.

Please accept this respectful request to update the terminology that you and FOXNews use in referring to organ donors and transplantation as an opportunity to increase your sensitivity to the generosity of the the real heroes and their families. It is easy enough to do and will be deeply meaningful.

Amy L. Friedman M.D., F.A.C.S.

Perspective: Why Does One Rabies Death Matter So Much?

Though truly tragic, this morning’s news that one kidney transplant recipient in Maryland contracted rabies and died in 2012 through the process of deceased organ donation in 2011, (CNN report of rabies death) must be kept in perspective. There can be no doubt that all parties involved intended to help save lives through organ donation – and that these organs were desperately needed. Indeed, tonight, there are 117,477 people on the U.S. waitlist for all organs. And each DAY in the U.S. 18 people whose lives might have been saved through organ donation die.

But transmission of unusual and unexpected infectious organisms like Rabies and Balamuthia (an amoeba known to cause encephalitis) has been previously reported through organ transplantation. The question to be asked in each case of potential organ donation and transplantation is which is greater, the risk of doing the transplant or the risk of NOT doing it. Surely, many of the people who have died awaiting transplants would have been eager to take such chances had they known they might still be alive > 1 year afterwards as 3 of these 4 “rabies tainted organ” recipients (1 kidney, 1 heart, 1 liver patient) apparently still are. These patients are alive and reported to have begun receiving anti-rabies therapy. We will learn together whether they survive – and we all certainly hope they will (I feel confident in speaking for us all).

So, keep in mind that our crucial task is to address the organ shortage, not to judge anyone involved in the 2011 donation and transplant that led to the unfortunate death on one person from rabies. While we grieve that loss, let’s be constructive, remember the big picture, use the death to motivate new memberships in organ donor registries organ donor registration and to urge journalists to be more responsible in their overall reporting about brain death brain death journalistic inaccuracies .

Rabies Bites A Transplant Recipient!

News has just been released by the CDC (Centers for Disease Control and Prevention) CDC rabies story of the third known episode of human to human rabies transmission through organ transplantation. Thankfully this is extremely rare, though lethal. All that has been shared thus far is that one of 4 organ recipients from the same organ donor in 2011, died more than one year later of the same raccoon type of rabies as the donor. To be clear, the donor was NOT known to have rabies at the time of death – this is the essence of the problem.

A key principle in deceased organ donation is that the cause of death must be known – in order to prevent exactly this type of disease transmission. If there was a rapid test for rabies that could be applied, then we could exclude it. But there is not, so we must rely on having another cause of death. In the first episode of transmission in 2004, cerebral hemorrhage in the donor was a plausible cause of death and the simultaneous presence of rabies was a complete surprise. The devastating result was the death of all 3 recipients from transmitted rabies.

With today’s news we have also learned that 3 of 4 recipients remain alive and are being treated aggressively with immunoglobulin (passive therapy) and anti-rabies vaccination (active therapy). Let us all hope that they survive this tragedy. We accept the cryptic nature of the information being released – clearly the patients and donor are all entitled to privacy. We await more information so that we may sharpen our questions and choices with respect to acceptance of potential organ donors. But please remember that the severity of the current organ shortage that is associated with the deaths of 16-18 persons per day in the U.S. makes it very difficult for us to turn down donors who seem to be appropriate. What we must be certain to do is to appropriately educate and involve potential recipients about known risks such that their choice may also be informed.

Live Birth After 5 Organ Transplant

It’s a new record! Five years after receiving a 5-organ, multi-visceral transplant at the age of 19 years, a Qatari woman gave birth to a healthy daughter at the Jackson Memorial Hospital in Miami, reports AP Press.
There are so many successful pregnancies following organ transplants that there is a National Transplantation Pregnancy Registry. Technical issues that are routinely handled include adjustment of the doses of immunosuppressant medications because of the increased circulating blood volume during pregnancy, hypertension control, and close management of kidney function.

Details released about this case describe other medical miracles that are, today, simply taken for granted. The pregnancy was established through IVF (in vitro fertilization) and the baby delivered by Cesarean section. What a story! The first pregnancy after a 5-organ transplant including the liver, pancreas, stomach, small and large intestine. And now another new life. That’s what I’m talking about.

NJ Considers Pot + Txp, What Do You Think?

As marijuana use becomes more accepted throughout the U.S. the question of whether isolated cannabis use should prevent candidacy for transplantation is arising more frequently.  Clearly, anyone who behaves in a medical irresponsible manner for any reason – not showing up for appointments, skipping medications doses, etc. – will be turned down with or without the use of marijuana. But the individual who is fully compliant and acknowledges smoking pot (thereby being honest with providers!) has often been excluded. The issue is more complicated by the fact that the medical use of marijuana is legally permissible in an increasing number of states.

New Jersey Senators have just passed S-1220 to specifically prevent medical marijuana users from being ejected from transplant wait lists.  Transplant centers require such support from society to be able to effectively apply such directives. Why? Because it is the insurance carriers whose policies drive decisions behind the scenes. Even if a transplant team supports the marijuana smoking patient’s candidacy, if the insurance company cannot be persuaded, unfortunately the patient won’t be transplanted.

In the absence of clear evidence that marijuana use specifically harms organs transplants or interferes with the immunosuppressive drugs, this issue is likely to become a more frequent challenge. While cessation of cannabis use is to be encouraged in order to avoid any additional inhalant into lungs vulnerable to infection, it should not be required in the otherwise compliant patient. However, it should also be noted that anyone with sufficient financial means to purchase marijuana must also be able to afford all medications!