In Arizona there are 98 patients who have been approved for organ transplants but because of cuts in state run Medicaid there is no money available to pay for the procedures. There has been a lot of misinformation about the effectiveness of transplants and some have even suggested that there isn’t much hope for most of these patients anyway.
I contacted my friends at the United Network for Organ Sharing (UNOS), the national organization that coordinates all transplants in America, and asked them to write a guest blog on the facts about donation and transplantation. Jim Gleason, a heart transplant recipient, activist, UNOS committee member and National President of Transplant Recipients International Organization (TRIO) responded with compassion, facts and hope
Jim Gleason, UNOS
Sixteen years ago, with heart meds running at their fullest and the heart still failing, I waited for any news of an available heart to replace my failing one. I felt no fear of death as each day seemed to draw nearer to that possibility, never giving up hope and continuing to pray each night “…Thy will be done.” Imagine my emotions when 6am the next morning, Heather, my transplant coordinator nurse, called with those awaited words, “Mr. Gleason, I think we have a heart for you!” Even today when I share that part of the amazing story, those emotions well up bringing tears to my eyes, causing me to pause before continuing for so many audiences over these many years. Yes, that did become my “new heart” and I’ve been enjoying a fulfilled and productive life ever since, thanks to that generous donor family decision.
Viewing developments from my 16 years post heart transplant life history, I see major improvements in every direction. Technology is keeping us alive longer, making the wait for a transplant more successful and raising the quality of life post-transplant dramatically. I offer this vision of hope to you from years of personal observation and life experience. Allow me to share some examples.
Reports of improvements in donated organ preservation will dramatically affect where those organs can travel to the neediest patients. Through preservation pumps, a donated organ’s condition is being improved, before they are implanted, resulting in both healthier transplants and allowing previously discarded organs to be made viable for transplant. I see healthier recipients coming back to fulfilled and productive lives than ever before, especially in today’s lung recipients, as one example, where in days past, this was almost a rarity and too often a short-lived success. Heart patients are waiting for their transplants at home, often supported by miniature-implanted pumps that can keep them alive, sometimes without even a human heart, for months and beyond the one-year milestone that seemed impossible just years ago, now almost commonplace.
Recently our support group heard a presentation about “growing transplantable human bladders” from the patient’s own cells. When we asked how soon this might be a viable option, imagine our surprise in hearing that over a dozen had already been grown and implanted in children as part of the yearlong trial to get government approval, and that such bladders were grown in just 6 to 8 weeks! Now even the invasive biopsy used to test for possible heart rejection after transplant has been supplemented by a simple blood draw. Through complex DNA testing that test yields a “risk of rejection” metric that can be used to reduce the previously large number of very expensive biopsies ($60k each I heard recently) with these $3k blood tests. Now that’s progress and hope for us all.
OPO’s (i.e, the organ procurement organizations that work with UNOS to insure organs get to the right patients) and transplant center staffs are teaming up to share best practices, increasing donation rates, patient survival and improving the overall patient experience, before, during and after the transplant. The lifesaving but very expensive immuno-suppressant meds that years ago were given in heavy dosages with long-term possible toxic side effects on the kidney and liver, for example, are today proving effective in lesser amounts. As one very successful and long-term transplant surgeon explained candidly to our support group, “We are discovering that the body itself can deal with those rejection challenges supported by far lesser amounts of those meds.” Or as another patient, twenty-four years out from an 1986 heart transplant, heard from his transplant doctor, “We really didn’t have enough experience back when you were transplanted – often making “seat of the pants” decisions based on what seemed to be working so far. Today we have so much more to work with in proven practices that are shared world-wide to the benefit of patients everywhere.”
When my own kidney ten years post-transplant showed early signs of weakening due to those meds, we had two new alternative drugs that I could be switched to that resulted in improving that kidney function before a transplant was needed. Today, as I find myself on Medicaid supported insurance, even the high cost of those brand name drugs, a major financial challenge for many post-transplant, are replaced with equally effective low cost co-pay generics. As we live longer and healthier post-transplant lives, we enjoy the increasing benefits of such developments, both in quality of care and in cost of that care, as evidenced by these modern drug improvements. At a recent heart transplant dinner celebration of life, our local organization of 800 heart recipients, honored eight who were over 20 years out with their “new” hearts – and I stress that was just our “local” area support group! We were all given hope and inspiration by their example, and again, that was from the early era of very challenging heart transplants. How much more we can expect today with today’s protocols, much improved over the past half century in hearts, as just one example.
My personal post heart transplant experience has included seven years of working on three different UNOS committees. Know that there are over 20 UNOS committees supported by more than 700 volunteers of all backgrounds – yes, even candidate and recipient patients like you and me – working to make the process constantly better, keeping up with the ever improving developments in medical and computer/communications technology. All serve without pay, dedicating their time and talent to help you get that transplant in the shortest and healthiest manner possible. In seeing such dedication and hard work, I come away knowing that our process is in good hands and will continue to improve each and every year in a transparent environment that is open to anyone who cares to take the time to see it through the UNOS web site or even personally visits them in Richmond, Va. “Been there, done that!” and I can tell you it’s worth the trip.
The organ allocation process is constantly under review and revision by these UNOS committees, all done open to public preview and comment. Currently, a concept known as “net benefit” is used as a basis for ongoing changes in allocation policy to insure that scarce organs are going to patients who will receive most long term life-years benefit from the right gifted organ. Strict rules and constant oversight insure that organs go to those in most urgent need, not just those who waited the longest. We may see a critical patient sometimes getting a liver transplant, as one example, with short wait times. This may seem unfair to another who, less ill, can still wait for their transplant while that other life is saved “just in time.” It’s a balancing act that is constantly simulated, reviewed and improved, with the results then compared to the expected outcomes for confirmation or correction within those committees.
We see and are concerned that the national waiting list is constantly growing. But realize that this is due to the success of organ and tissue transplantation and people surviving longer with now older bodies that need replacement organs. Patients are finding out about transplant success as an option to their condition – all good news. Not a day goes by that we don’t read or hear about the results of increased living donations. Now that the “paired donation” process is allowing a living donor and their unmatched recipient to share kidneys among a chain of (most recently I saw 14…) individuals, the waiting list benefits as those transplanted are removed in that chaining process. Yes, I feel amazed and hopeful in seeing progress like that.
And also there is good news in that organs donated and organs transplanted have increased significantly over the past decade through the work of national “breakthrough collaboratives.” These cooperative nationwide efforts have served to both identify and spread the “best practices” of organ and tissue donation to hospitals and OPO’s across the country, especially those with the highest donation environments. That growth continues but at a slower pace recently, calling for even more work in educating everyone about this urgent need. But that’s where you and I come in.
Patients are the living examples of both the need and the success of transplant today. As you wait for your transplant, and again especially after recovering from a transplant, spread the word with your personal life experience as evidence of that need/success. The most effective message is that one-on-one face to face that only you and I can give. Remember, the lives you save in promoting organ donation may be both yours and mine!
From Bob Aronson
If you would like to donate money to help these Aizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF). You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/
Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Also…visit and join my Facebook site, ORGAN Transplantation Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .
The more members we get the greater our impact on increasing life saving organ donation