Dialysis from the sharp end of the needle

Medicare's cost/benefit analysis of lifetime immunosuppression coverage

By Bill Peckham

Medicare has made available a paper in its entirety by doctors Page and Woodward that appears in the winter 2008-2009 issue of Health Care Financing review. Cost of Lifetime Immunosuppression Coverage for Kidney Transplant Recipients (pdf link) builds on research done in 2004 by Yen et al. Cost-effectiveness of extending Medicare coverage of immunosuppressive medications to the life of a kidney transplant (pdf link).

As the Page, Woodward page states at the beginning Yen et al.:

used a Markov model to determine the cost effectiveness of lifetime immunosuppression coverage. They estimated the costs of graft failure to be $137,9302 per patient during the first year after failure. Then they combined this estimate with estimates of quality adjusted life year improvements and predicted a net societal savings of $136 million annually. While they included benefits in their analysis other than potential cost savings, the strongest case to be made for extending lifetime coverage to all transplant recipients would be to show a net cost savings to Medicare. For this reason, we examined this issue from only the perspective of Medicare’s cash flows.

Politically this makes the most sense. If you can make the case that aside from the positive societal value for lifetime immunosuppression coverage there is a cost savings to Medicare by making this coverage change then that would make it politically very easy to pass legislation granting lifetime immunosuppression coverage. And there is an easily understandable way that you could imagine Medicare saving money. Each year of immunosuppression coverage is cheaper than a year of dialysis, extending coverage would keep people off dialysis, Medicare saves money. That is a good elevator message.

However, Page & Woodward with what reads to be regret, shoot that idea down:

We found evidence to suggest that extending Medicare’s lifetime coverage of immunosuppression medications to all of the non-elderly, non-disabled population of kidney transplant recipients would have resulted in a significant additional cost to Medicare.

That's unambiguous. They did break out people in low economic demographics and show a potential savings in this group but under Medicare there isn't a way to introduce an economic need threshold, so they could only point back to the Yen et al. approach of including all societal cost/savings as the way forward. I think it does make sense to consider the entire societal cost of healthcare policy but I think Page & Woodward missed some potential Medicare savings.

Over the years of peer to peer online discussions I have "met" a lot of people and there is a group of people who self report that they are not seeking a transplant because of the three year immunosuppression coverage rule. I can't say how large this group is but my impression is that it is not insignificant. Often it is when a person would be accepting a living donation that they are most reluctant to put themselves into a position where they could not support the gift. My hypothesis would be that there is both a cohort who selects to not pursue a transplant and a cohort who selects to pursue a cadaveric transplant even though there is a potential for a living donor.

These two groups of patients should be investigated to determine their size and by extension the financial impact of switching them to transplant once lifetime immunosuppression coverage is available under Medicare.

Depression: A co-morbidity that can be treated

By Anna Bennett

Living with CKD5 and trying to manage day to day can be overwhelming. Our healthcare system is stressed almost to the breaking point.  People need to be a partner in their own healthcare.  That is almost impossible if a person is suffering from depression. In November 2008, Renal Business Today ran an article about a paper presented at ASN '08 written by Ricardo Sesso, MD and his colleagues at the Federal University of Sao Paulo in Sao Paulo Brazil Therapy Helps Dialysis Patients Overcome Depression (excerpt):

The investigators found that after three months of intervention, the group receiving cognitive-behavioral therapy (ed. CBT) had a significant improvement in depressive symptoms, cognitive function, and quality-of-life scores when compared to the control group. These differences also persisted after six months of intervention.

During this period, patients received once a month maintenance sessions. The authors concluded that cognitive-behavioral therapy—a relatively cheap, harmless and practical intervention—is an effective strategy to treat depression in patients with kidney disease. “No other randomized trial using psychological or medical intervention with drugs has shown to be effective or has been published in this regard,” said Sesso.

All too often, chronic illness overshadows other conditions that affect quality of life. Depression can be just as debilitating.  Caretakers this means you too, your health is just as important as the person you love, they need you to be as healthy as possible.

Here is a reminder of the signs of major depression  - keeping in mind that these are also normal reactions to being on dialysis, but when they persist, seek help - it may make life better - it certainly can't hurt. 

Signs of depression from Mayoclinic.com:

• Loss of interest in normal daily activities
• Feeling sad or down
• Feeling hopeless
• Crying spells for no apparent reason
• Problems sleeping
• Trouble focusing or concentrating
• Difficulty making decisions
• Unintentional weight gain or loss
• Irritability
• Restlessness
• Being easily annoyed
• Feeling fatigued or weak
• Feeling worthless
• Loss of interest in sex
• Thoughts of suicide or suicidal behavior
• Unexplained physical problems, such as back pain or headaches

If your dialysis provider does not have the facilities to help you, look outside of the unit, call local mental health providers. If there are insurance or financial issues, explain your situation, and ask for a sliding scale.  If you live in a remote area, you may be able to get telephone support from another area.

In these economic times, there is no stigma with depression, our economy and our world is depressed. We can't make our kidneys work again, but let's make 2009 the year that we heal what we can, and depression can be healed.

It's true the guy did give her a kidney but everything else appears to be a total lie

By Bill Peckham

I've held off on commenting on the man wants his kidney back stories that have been widely discussed on not only CKD discussion boards and listservs but throughout the national media. It supposedly brings up questions of ethics and should we pay for organs. I don't think it does but I do know one thing: You should never think that you know what happened in a marriage if you've only heard the story from one of the spouses.

HDCN links to Dawnell Batista, wife at center of kidney case breakup finally tells her dramatic story published in the Daily News and sure enough it turns out the guy is a lying liar and a gigantic jerk. When the lying doctor "told Larry King his reason for divorce was “infidelity.” He didn’t say it was his own." In fact the wife has an incredibly sympathetic story and it is an indictment of the media that they took this liar and his Howard Stern lawyer at face value.

The one part of the story that the highly believable Daily News story missed is that the lying doctor also impacted people far removed from his self centered universe. This idea that your donor could come back years later and want your kidney will add another factor against in the calculus of accepting a kidney from a living donor. I am waiting for Larry King to have Dawnell on, as well as her corroborating friends so that the lying doctor can be properly held up to public ridicule and scorn.

While Larry is on the topic he should also have on his show someone from Donate Life (if it was up to me I'd call it Sustain Life, but whatever) to talk about living donation and why this one particular lying jerk shouldn't enter into anyone's personal calculus on whether to accept a kidney from a living donor.

Deceased Donor: Kidney Allocation Policy

By Anna Bennett

The facts are clear.  There are not enough kidneys for those who want to be transplanted and the "List" is overinflated.  See Bill's post Waiting for a Transplant - eligible v. ineligible.

In the past few years, there have been inroads in dialysis (NxStage and HDHH) and inroads in transplantation.  New immunosurpressives are doing amazingly well with low antigen match kidneys.  OPTN/ UNOS are in the process of changing the current kidney allocation criteria.  Back in September, OPTN/UNOS issued a request to the community for input. 

Bill posted about this request in Measuring Dialysis to fairly allocate kidneys for transplant .  He wrote about his concern with regard to qualifying dialysis yet not differentiating between the superior outcomes of High Dose Home Hemodialysis v. standard in center hemodialysis.

The Renal Support Network has posted their response to the proposed OTPN/UNOS Kidney Allocation Policy.  

In the final paragraphs of RSN's response, they have a wise, reasonable request:

Thousands of lives will be affected. So we ask that OPTN/UNOS allow ongoing conversation and input prior to a decision, that a final process be more simplified and readily comprehendible than that which is currently proposed and that a pilot program be considered. This will help understand the impact and allow for changes if the new system needs adjusting.

Watching the development of redefining the allocation process is an amazing window into healthcare reform.

Transplant Tourism Pakistan: A First Person Account

By Anna Bennett

UPDATE:  Jan 31, 2009  We have been contacted by the author of the blog quoted below.  As it is illegal in Pakistan, the United Kingdom and the United States to purchase organs for transplant, in a compromise we have removed the archive of the original blog (which the author (now referred to as Bambi) deleted) and have redacted anything identifying the author.

Bambi's Journey is a blog about desperation. Bambi was desperate for a kidney, the hospital in Pakistan was desperate for foreign cash, and the donor, was desperate for money to ease the family's struggle with poverty.In the latest entry in the blog, Bambi has a new kidney, the transplant hospital has been paid, and we presume that the donor has returned to their life, one less kidney and with some compensation.

This is amazing to read.  Neither Bill nor I have ever read a first person account of a compensated foreign kidney transplant.  It elicits some powerful responses. For me, a recent deceased donor transplant recipient, it gives an account of the transplant process in a third world country with the added dimension of secrecy. The hospital advises:

...you keep a low profile and not interact with anyone from the outside, even if it is family. REDACTED

Bambi writes about the matching process and on arrival in Pakistan, had to wait a few days for the hospital to find a match. (I was on the UNOS list for 3.5 years) According to the blog:

They [the hospital] have almost 500 donors on their books. All REDACTED with O+ blood group, since this is a universal blood type and anyone can receive an organ from this blood group.

Also there seems to be many little hidden additional costs. I will need to pay more $ for donors that they will need to test to find a perfect match. They charge $250 for each new donor that they cross-match after the first 2 cross-matches, until they find the right match. They conveniently forgot to mention this vital information.

Bambi secretly tipped the donor 70,000 Pakistan Rupees (US $888.21):

Since it was so difficult to talk or connect with the donor, everything had to be done secretly. I was able to quickly tell REDACTED that I wanted to give REDACTED a gift, and if I could have a phone number or something from REDACTED. REDACTED told me that they did not have an address. I felt very sad hearing this. Later that day I was passed on a cell phone number by one of the nicer nurses. REDACTED Also it was a good opportunity to take photo's REDACTED. I also took that opportunity while no-one was around to tell REDACTED also that we wanted to give them some money as our gift of thank you and that they must not leave without seeing us before they left.

REDACTED

In keeping with the comparison, as a token of thanks, I sent a letter (to maintain anonymity via UNOS/OPTN) to my donor's family. 

Foreign Transplants are a controversial subject, and are widely written about from a pundit and medical perspective. From 11/07 edition of Transplant international : Official Journal of the European Society for Organ Transplantation A socioeconomic survey of kidney vendors in Pakistan:

In recent years, Pakistan has emerged as one of the largest centres for commerce and tourism in renal transplantation. Kidney vendors belong to Punjab in eastern Pakistan, the agricultural heartland, where 34% people live below poverty line. We report results of a socioeconomic and health survey of 239 kidney vendors. The mean age was 33.6 +/- 7.2 years (M:F 3.5:1). Mean nephrectomy period was 4.8 +/- 2.3 years. Ninety per cent of the vendors were illiterate. Sixty-nine per cent were bonded labourers who were virtual slaves to landlords, labourers 12%, housewives 8.5% and unemployed 11%. Monthly income was $US15.4 +/- 8.9 with 2-11 dependents per family. Majority (93%), vended for debt repayment with mean debt of $1311.4 +/- 819. The mean agreed sale price was $1737 +/- 262. However, they received $1377 +/- 196 after deduction for hospital and travel expenses. Postvending 88% had no economic improvement in their lives and 98% reported deterioration in general health status. Future vending was encouraged by 35% to pay off debts and freedom from bondage. This study gives a snapshot of kidney vendors from Pakistan. These impoverished people, many in bondage, are examples of modern day slavery. They will remain exploited until law against bondage is implemented and new laws are introduced to ban commerce and transplant tourism in Pakistan.

Rarely do we get a first hand account.  I am sorry that Bambi reached such a level of desperation that Bambi was compelled to travel to an underprivileged country for a transplant.  I thank Bambi for sharing her experience.  It is a window into organ trade that is illuminating and thought provoking.

A high profile transplant story

by Anna Bennett

On Friday, December 11, 2008, ABC TV's 20/20 broadcast the story of Ani Mozian-Whitney, a 1995 transplant recipient, who had a baby girl in early 2008, and then her transplant failed.  Ani is also a field producer for 20/20, and she was transplanted in 1995 by Dr. Alan Benvenisty (who also did my transplant).  When her transplant was failing, her boss, Joan LeFosse became not only her assigning producer - but also her donor.  And Dr. Benvenisty performed Ani's second transplant in June of this year.

Here is the article, Life Given Back' to New Mom by ABC News Colleague 'Little Blessed Baby' Inspires Kidney Donation, Leads to Remarkable Journey, by Bob Brown. But even better than the article is the video.

The crew from 20/20 had an all access pass to the ups and downs of the transplant, they were in pre op, surgery and post op, recovery.  Here are the videos (in two parts):

Part One (background and the story of the baby, friendship and loss of the first transplant)

Part Two (the medical aspect, plasmapheresis, both the donor surgery and the transplant surgery)

I am grateful to Ani and Joan for allowing us to follow on their journey.  Of course it was very familiar to me, she had her transplant with my surgeon, at St Luke's where I had my transplant. I had been hearing about this since November 3rd, and I met Ani at my last clinic visit. 

This broadcast showcases the emotional rollercoaster that someone with CKD5 is on.  The highs of having a transplant and starting a new family, the lows of having that transplant fail, back to the high of an altruistic donor offering a kidney when they weren't even asked.  It is the story of friendship and hope for everyone who has chosen translplant as their renal replacement therapy while they live with CKD5. 

Measuring dialysis to fairly allocate kidneys for transplant

By Bill Peckham

United Network for Organ Sharing (UNOS) is designated as the Organ Procurement and Transplantation Network (OPTN) by the federal government. They are the rule setters for how a limited supply of post mortem kidneys are allocated to a growing number of people waiting for a renal transplant. The OPTN/UNOS Kidney Transplant Committee has put out a Request for Information (RFI) as a way to engage interested parties in the rule making process.

Any responses to the RFI are due by December 18th. Through a well described process the committee has come to certain conclusions on how to improve the allocation of kidneys, the RFI (PDF link) is a final step to making the proposed changes. The RFI's Executive Summary gets to the point:

The OPTN/UNOS Kidney Transplantation Committee conducted an extensive, three-year long review of kidney transplantation. From these deliberations, the Committee found that the current allocation system has several limitations. First, the current kidney allocation system is heavily reliant upon the length of time a candidate has been on the OPTN Waiting List. Unlike the liver and lung allocation systems, kidney allocation is not based on a number of other available objective medical criteria. Secondly, the current system does not match donors and recipients well. The result is that kidneys with long projected post-transplant survival commonly are allocated to candidates with expected short post transplant survival. Partly as the result of this allocation, death with a functioning graft is now the most common cause of kidney graft failure. Finally, unlike the allocation systems for livers and lungs, the Committee found that the current kidney allocation system has no agreed upon central goal such as reducing wait list mortality or improving post-transplant survival.

The Committee concluded that the current system could be improved by the inclusion of several new allocation concepts including:

• Ranking candidates based upon objective medical criteria using survival with transplant compared to survival with dialysis, termed Life Years from Transplant (LYFT).
• Classifying of donor kidneys with a continuous measure called a donor profile index (DPI).
• Changing waiting time from time since being added to the OPTN Waiting List to the time from the start of dialysis (DT) regardless of when the candidate was listed.

These three major concepts could be combined in a novel way so that candidates have equitable access to deceased donor kidneys, and those donor kidneys are matched more appropriately with potential recipients. In this system, kidneys with longer potential for survival would be allocated primarily to candidates with longer expected survival. This approach should result in fewer re-transplants and lower rates of death with a functioning graft.

The whole document makes for interesting reading but I would be interested in knowing on what dose of dialysis will they base their comparison? Both the "survival with transplant" and the "survival with dialysis" would depend on the dose of dialysis. The Freedom study from NxStage shows a higher graft survival when transplant is proceeded by higher doses of dialysis and many studies indicate that people with CKD5 live longer when they receive more dialysis than the conventional 3x/week, incenter dose.

Acknowledging the survival advantage of high dose dialysis would, I think, change the allocation of kidneys. If someone could not dialyze more frequently - because of home situation or lack of a fistula - they would have a higher LIYT than a person dialyzing more frequently at home. Except against this gain you'd need to reckon the extended life span of the transplanted kidney. It's a grim calculus.I think the UNOS/OPTN allocation advantage would go to the person on conventional dialysis i.e.conventional dialysis is more of a longevity disadvantage than preceeding transplant with a high dose of dialysis is an advantage.

Renal Transplantation: Is it Time to Revise Current Informed Consent Protocols?

By Peter Laird, MD

The informed consent procedure for renal transplantation is the process relating the risks, benefits and alternative treatments of renal transplantation to prospective patients. I recall my own briefings on renal transplantation that I sat through with my wife as we considered a preemptive transplant. To that end, I also endured a colonoscopy and even suffered through a cystoscopy to complete an evaluation for microscopic hematuria caused by my IgA nephropathy. The subsequent diagnosis of a malignant melanoma gained from my youthful days on the beach put this plan on hold.

Privately, I have had the opportunity to discuss renal transplantation with many of my fellow dialyzors; surprisingly I have found a profound lack of understanding in many of these patients even about common renal transplantation risks. One such patient I talked to several months ago is a Caucasian female who enjoys horse back riding in sunny California awaiting a kidney from her son. I asked her if she was familiar with Squamous Cell Carcinoma after renal transplantation and that she would likely have to give up all exposure to the sun since SCCA is deadly in transplant patients. Although I know that she was informed of this risk during her evaluation as I was as well, she did not understand its significance and potential impact on her lifestyle.

I have yet to meet any candidate for renal transplantation in the last two years that could recall the basic cancer risks, the infection risks and even that of depression, anemia, avascular necrosis, and the pervasive cardiovascular risks let alone that of transmissible agents from high risk donors.

The standard of informed consent is not only to deliver the information to the patient but to also certify that they understand the issues that are presented. It is one of the most important aspects of any medical informed consent procedure that must be documented to afford any medical legal protection for the physician should an adverse outcome develop. It is such an important part of the medical legal interaction of patient care that many physicians who routinely perform high risk operations now videotape all informed consent interactions documenting not only content of information but also the patients understanding of these risks. It must also be concurrent with the procedure itself and thus a consent procedure done remotely is updated at the actual time of the operation to meet the legal and fiduciary duties of a physician for their patients to ensure that they understood those risks, benefits and alternatives not only in the office but at the actual time the procedure is performed.

There are some in the renal transplantation community that believe it is better to give a general informed consent procedure at the time a patient is placed on the transplant list and withhold specific information about the donor at the actual time of the transplant. Many patient refuse high risk organs knowing that the donors are at risk of HIV, Hepatitis C and other infectious agents. Some transplant advocates decry the “wasted” organs refused by patients aware of the the complete risk profile of these potential donors. In such, the NEJM published an article on June 26, 2008 arguing for a general, full informed consent at the time of renal wait listing and then not offering patients an option to decline an organ from high risk patients at the time of transplant as one method of increasing the pool of available organs.

However, one of the first lawsuits stemming from transmission of HIV from a high risk renal transplantation is likely to doom this method of informed consent before it is even implemented:

The woman, a former dog groomer known in court papers only as Jane Doe, received the kidney in an operation at University of Chicago Hospital on Jan. 9, 2007.

"She was informed that it was a young healthy organ," Demetrio said. But he said that she was not told at the time of the transplant the donor who was killed in an auto accident had engaged in male-to-male sexual activity.

At the time, she was on kidney dialysis for a non-life threatening condition.

The lawsuit said that if Jane Doe had been informed of the "true nature of the donor's lifestyle and the risks associated with receiving his kidney" she would not have gone ahead with the operation. She already had rejected two other kidneys offered to her because of risks involving the lifestyle of the donors, it said.

It was not until Nov. 1 that Jane Doe was asked to come to the hospital because three other patients who had received organs from the same donor had tested positive for HIV. She then discovered that she had contracted HIV and hepatitis C as well.

The hospital had been told by the donor network before the transplant the donor had engaged in homosexual sex, a "high-risk behavior," according to the lawsuit.

Another unrelated lawsuit involving transmission of malignant melanoma to more than one recipient from the same donor highlights the dilemma transplant surgeons and even primary care physicians must contend with. Numerous medical legal cases have established that referring physicians are legally liable for informed consent at the time of referral for a procedure as well as the specialist performing the procedure. It is my opinion that renal transplantation will soon enter into the arena of lawsuits based on informed consent as do so many other commonly performed operations and procedures.

As a physician, I am no friend of the lawsuit happy lawyer making huge sums on my colleagues who are vulnerable to 20/20 hindsight reviews of all of their actions. Yet as a patient seeking alternative renal replacement therapies other than renal transplantation, my options have been blocked by the universal castigation of all treatment options other than renal transplantation.

However, once an alternative treatment is identified by the legal community, not only must the patient be advised of these options, they must also be given reasonable accommodation to receive the alternative therapies. Thus, it is only a matter of time before the legal community understands what many in the dialysis community already know, daily dialysis survival rivals renal transplantation survival, most especially nocturnal dialysis.

It is my hope that the renal transplantation community will recognize their informed consent obligations to not only discuss in more detail the risks of renal transplantation, but also what was entirely absent in my informed consent procedure, the alternative of daily dialysis that many other nations have already embraced. Perhaps this tragic case of HIV transmission from a high risk donor will end the paternalistic renal transplantation approach where the physician makes the decisions for the patient on which organ is best for which patient. The respect for patient autonomy demands an informed renal transplant patient population still at the helm of decision making authority as it is in all other venues of medicine in this nation.

Sunday me blog: Transplant the first week

By Anna Bennett

Over the past year, Bill has occasionally posted personal events in a Sunday me blog, today it is my turn.  Bill had been posting updates on my transplant in a thread over on IHD and as I am at home recuperating for the next month, (I call it house arrest) I filled in the blanks between his updates.  So, here it is:  Immediately following The second early morning phone call:

Saturday, November 1, 2008
It all started while I was at home, asleep in my bed.  A 32 year old man had a cardiac arrest, and was put on life support.  He was an organ donor, and his final gift in life was donating his organs to strangers in need.

Sunday, November 2, 2008
My phone rang around 6am, as it was the reversion of daylight savings time, I had thought that I’d be gaining an hour of sleep, but after a brief conversation with my Transplant Coordinator, there would be no extra sleep.  I was second on the list for a kidney.  The circumstances of my donor’s death were discussed, and the kidney was a match.  The wait was on.

I had an “on deck” phone call in July, so, as time passed, I was ready to start my normal day, I made coffee, because even if I did get the transplant, coffee wasn’t so bad, and my nerves needed at least a small cup.  I sat in my dialysis chair and pondered transplant.  I had some pretty important plans for the upcoming week, something I had been looking forward to for a year, the cynic in my just said “figures”.  After an hour or so, my phone rang again, the kidney was mine.  My head started to spin.  I had been planning for this moment since June 2005 and here it was.  I stood in the middle of my living room and thought “what now?”  I called Bill, as usual; he had a witty reply and gently talked me through my mild panic attack.  After we hung up, I started the alert chain, my friend Nancy was to be the gatekeeper of information for my friends.  I ran through my checklist of prep for the surgery –after all, I was to be away from home for at least 5 days possibly longer, cleaned the kitchen, took out the trash, watered the plants, took a quick hot anti bacterial shower, paid any bills that would be due in the next two weeks, got dressed in the clothing that I would be going home in, packed a bath bag, packed a book and my phone charger, walked out the door and down to Broadway to grab a taxi to the hospital 114 blocks away.

As I was in the taxi, I called the family in London, my boss, and two of my best friends.  My Transplant Surgeon called me to check in and coach me through what to pack, and was surprised that I was already on my way to the hospital. He told me to go straight to my room, and the nurses and Surgical Fellow were waiting for me.

My room was on a floor that I had been on before for other surgeries, and my admitting nurse remembered me.   We caught up as I unpacked and gowned up, the Fellow came in and took my history and started an IV.  I was allowed to self cannulate and draw my own pre-op bloods (after all, after a year of home hemodialysis, if anything, I know how to self cannulate)  this led to my first of many conversations with staff about High Dose Home Hemodialysis (HDHH), and how it has benefitted me for the past year, and I credited it for keeping me in great health for my transplant.  The Fellow left me alone in my room to relax, and I made some phone calls, sent some e-mails from my phone and tried to breath.  I was also visited by a man with a portable x-ray machine, and I had a chest x-ray in the comfort of my own room.

My Transplant surgeon, Dr. Benvenisty came into the room and we did my pre-op and informed consent.  We discussed the kidney at length, and he offered to hold onto my phone so that I’d have it in recovery, I called home one last time, and of course, I had low balled/simplified the surgery so much, I was told that they were out shopping.  I had to laugh.  I handed off my phone, became a patient and was wheeled down to pre-op.

I’ve had a few surgeries at St. Luke’s, so I know pre-op well.  It was a quiet Sunday morning, including mine, there were only 3 surgeries.  I was given my first dose of cellcept.  As I lay on the gurney, we chatted, talked cell phones, and waited for the kidney to arrive.  There was some concern, as it was the day of the NYC Marathon and we were worried that it was stuck in traffic.  But it wasn’t, it was in a different room, and soon, it was wheeled into pre-op.  It was a sobering moment.  The cooler is high tech, and on wheels, and the cooling system makes a whooshing sound that is positively sci-fi.  And there is a form of ceremony in the delivery of a donated organ for transplant, the team gathered round the cooler and processed and witnessed the delivery, blood type was cross checked, tests were cross matched, and everything was witnessed at least three times.  Then they opened the cooler.  I was on the gurney, and my glasses were upstairs in my room, I didn’t see my new kidney, but I knew that it was in good hands.

Soon enough, we were both being wheeled together to the operating room; the pulse of the cooler will be in my mind forever.  I was wheeled into the operating room, my kidney stayed behind for a moment.  I got up, and hopped onto the operating table, said hello to the team, was covered by a warm blanket, told the nurse that this was the best spa ever, and then I was out.

While I was out, I was intubated, two additional IV’s were inserted into my non fistula arm, a foley catheter was inserted and a 9 inch incision was made in my lower abdomen (I had begged for a tummy tuck to be included, but alas, it was not to be) and my new kidney was grafted into my body.  It started producing urine while I was on the table.  There is a common anomaly in some kidneys, two renal arteries – well, mine had three, my new kidney actually has two renal pelvises, but as it is a common thing, and my surgeon is extremely good at his job, he simply dealt with it.   No problems – it just looks a bit odd under ultrasound, if the radiologist doesn’t know the physiology. (more on that later)

The first thing that I remember is telling people that I had sprung a leak.  (an IV had come out) it was quickly remedied, and the nurse was asking me my name, and did I know what I was there for.  At some point, Dr. Benvenisty’s name was mentioned, and I heard him call out “I’m right here” I replied “You’d better be” (did I mention that I really like this man?)

The next thing I remember, he gave me my phone, and my post-op nurse was taking my vitals, we were alone in recovery overnight, and I was on the phone letting everyone know that I was out of surgery and all was good.  At St Luke’s it is common for Dr. Benvenisty to keep his post-op patients in recovery a bit longer, you get intense nursing care, and there is an isolation room that has been informally named the “Benvenisty Suite”

Monday, November 3, 2008
I was moved in to the suite in recovery in the morning when other patients started coming in.  My immunosuppressive regime was started, the meds that will be altering my body chemistry for the duration of my graft, 2x a day for the pills, and 5x a day for the anti fungal liquid.  With regard to my kidney, there was a little hiccup.  My urine was emptying sporadically; the overall volume was ok, but inconsistent.  This could be a sign of hydronephrosis.  My surgeon is a cautious man, and he ordered an ultrasound.  But my creatanine had already dropped for 6.8 to 3.6 there was no doubt that the kidney was working, but what was up with the inconsistent peeing?  Dr. Benvenisty suspected the foley, but tests were ordered to be absolutely sure. The radiologist noted the second renal pelvis and there was a question of ruling out hydronephrosis – so now we were on alert.  For the first time, I got up to a chair.  I had intense gas pain.  (maybe that Sunday coffee wasn’t such a good idea) 

My arterial IV was removed, which was a great relief, as it was on the inside of my right wrist, and each time I grasped the bed rail to either move myself in bed, or get up, I was putting serious pressure on the line, and I had one heck of a bruise.  I was down to two IV’s , a pain pump, the erratic foley, oxygen cannula during the day and oxygen mask at night, and the cardiac leads, slowly my tubes were dwindling.

I don’t remember which staff member ran up to my room for my phone charger, but as soon as I was plugged in, I was chatting away.  I think that I would have gone insane without my phone…  And speaking of insanity… On Monday I had a very intense reaction to a conversation that I had earlier.  Really intense, intense to the point that I wanted to make a call and set things right.  This is not in my nature, and I was a bit freaked out by it, I closed my eyes for a second, and saw cartoons.  Personal revelation here:  I have done recreational drugs in my distant past, and as soon as I saw those cartoons, I knew that I was tripping.  Ah hem “Hallucinating” I believe is the proper medical term, and all I can say is that those closed eyed cartoons saved me for a potentially embarrassing phone call.  Note:  This is a rare side effect of prednisone and as I was not only on prednisone but Dilaudid as well, I am surprised that this was my most intense reaction.

I had a visit from the Infectious Disease physician who was called in to test my sensitivity to bactrim, we had a great visit, and decided that since the antidote to reaction to bactrim is steroids, and I was already on prednisone, we gave bactrim a try.  No problem.

Bill has alluded to my “adventures in nursing” and I’ll admit that he is privy to more detailed/candid information than you’ll get in this narrative.  I’ll just say that I had intense nursing care, and on most days there were two nurses following me, but sometimes those two nurses had to take a break, and let’s just say that many cooks can spoil the soup.  My overall care was amazing, and I complimented the Nursing Supervisor on his staff when he popped in to visit me.  It is just that when you are being cared for by so many people, surgical residents, Renal Fellows, Interns, Attendings, Nurses and Aides – well, you run the gamut, and everyone has an opinion on how things should be done, and the Nurses seemed to have the most diverse opinions.

On Monday night, I had my first visitors, my Boss, one of my best friends and a friend/co-worker.  They were excited/relieved to see how I was progressing.  They also were there when I met with my new Nephrologist, and that comforted them to realize that I was in such good hands.  That night, I slept and chatted with my nurse, shifted a lot in bed to try and get the gas to move, I was woken up every few hours for vitals and soon enough it was morning.  There was some concern about my oxygen saturation as well.  I wasn’t breathing as deeply as I should have been, so a chest x-ray was ordered, and I was given an incentive spirometer (breath exercise device) to build my lung volume.  I had another chest x-ray taken while I was sitting up in my bed, and the radiologist saw low lung volume, so there was definitely an issue to address.

Tuesday, November 4, 2008 Election Day
I was given a sponge bath, my meds, and brought my clear liquids tray.  I was told to drink, drink drink.  I was also on strict I/O (input output) so everything was recorded.  Still, my peeing was erratic, so more tests were ordered.  Another ultrasound, then a CT scan, then a nuclear medicine study of my kidney function.  It was a day of tests.  That night a friend from work came by to say hello, we visited for a bit and then I slept.  The windows were open in my room, and around 11pm, I was snapped awake by spontaneous cheering, I smiled.  Obama had won the election, and NYC was overjoyed and had taken to the streets in celebration.  I smiled and tried to go back to sleep.  But, it was a restless night, I lay awake for a while wondering what the hell have I done to my body?  Just two weeks ago, Bill, Cairny and I were walking the trails of Mt Rainer eating sandwiches by waterfalls - it was a perfect day, and I felt great.  But there I was, two weeks later in a hospital bed, in pain, drugged up and questioning my decision. This was my passing moment of regret, and in hind sight, I am glad that I had such a dose of reality – it makes  me appreciate the good moments more, I fell asleep, and morning came quickly.

Wednesday, November 5, 2008
The morning started out badly.  I was in a lot of pain and I had to get up, at one point, I just lost it and wailed, deep intense crying as I tried to sit up in bed.  This only lasted for a few seconds, and it ended in convulsive coughs, the silver lining was that it cleared my lungs, I could breath deeper, so that meant that soon I would be taken off oxygen.  Then it was time for vitals, meds and moisturizing.  An aide came to walk me to a bathroom to wash myself.  It is at this point that I should note that I am blind as a bat, and my glasses were up in my room, so for the past few days, everything was a blur.  I was moved to a different room in the recovery unit, and I was brought a breakfast tray with real food on it.  I was able to eat some egg white and a couple of bites of rice crispies, and then I was wheeled back to ultrasound.  After my scan, I came back to my room, met my new nurse and we went for a walk, then it was back to recovery to meet with my surgeon, fellows and nephrologist.  My Surgeon was concerned that I didn’t have my glasses and he dispatched a resident to get them from my room, but they were not to be found, this caused some concern, but I knew that I had a spare pair at home, so someone could go and get them if needs be.  It turned out that the floor had given away my room and packed up my stuff, and Dr. Benvenisty was not informed, his staff came to visit me later that day, and they brought my glasses to me, I could see again.  I missed lunch, but got dinner, some turkey, I scarfed that turkey down and it tasted good, but I was reaching the point of selling my soul for a cup of coffee.  For the rest of that day, I was on the phone, reading IHD, making calls and listening to TV, and by the evening, I was moved to my official room upstairs.  The cardiac leads were removed as was my oxygen, I was feeling great.

There is a private section on the 10th floor of St Luke’s it is decked out like a hotel room (non alcoholic mini bar, TV with cable, DVD and VCR, wifi, a great view of NYC, and an ensuite travertine bathroom with shower.  I liked it, and my new room was at the far end of the hall, so it was an oasis of calm, which was so peaceful after the constant activity of recovery.  My IV’s were stopped, and I was on normal drinking for my intake.  That meant that one more IV was removed, I was down to one IV and that was hep locked as an access, I could easily live with that.  The only thing that surprised me was the multiple needle sticks that started on Monday morning to check my blood sugar (diabetes is a common side effect of an immunosuppressive drug regime)  As we could only use my right hand, my fingers were taking a beating, and my belly was starting to look like I was part Dalmatian from the frequent heparin shots that were administered, soon enough, we had to move to injecting my legs, as we ran out of space on my belly – which on normal days has plenty of real estate to go around. 

At 3am, I realized that today was probably the day of my donor’s funeral.  I spent some time thinking about him, and the fact that our lives were now entwined.  I started writing my letter to his family in my head.  Receiving a kidney that is a person’s last gift of their life to a perfect stranger is a humbling event.

In the middle of the night, I was introduced to sci-fi vitals.  My temperature was taken by a wand that is slid around the perimeter of my face and ends up behind my ear.  Now, I have been woken up before by some pressure behind my ear, and I like it, imagine how confused I was when it was an aide taking my temperature.

Also in the middle of the night, there was some confusion as to why I wasn’t on an IV drip, so the Resident came in and I was hooked up.  In the morning, my surgeon officially stopped the IV and I was back to just the heplock and foley.

Thursday, November 6, 2008
Cool thing about being on a private floor?  The concierge brings you the NY Times in the morning.  If only I had coffee to go with the paper…Imagine my surprise when I was delivered a clear liquid tray.  I was starving, and frantic for coffee.  I called my boss and asked him to bring me food. I had some serious negotiating to do with the staff.  Also, this was the morning that the gas pain finally resolved.  It was going to be a good day.

The transplant team came bearing gifts, a stuffed flower for the foot of my bed, and a swag bag of a watch, socks, t-shirt, a pain pillow and other swag for my new chapter in renal replacement.  Dr. Benvenisty’s staff are super stars I firmly believe that good gravitates to good, and in this case I have developed a close personal relationship with each member of staff, Maddy the Coordinator, Sherie the Social Worker and Barbara who runs the place.  They care, and it shows.  Each day, they showed up to visit.

That night, I was advanced to real food, and my boss showed up with some lentil soup and quinoa salad, a robe and some cool socks.  I ate a little soup and it tasted great.  He put the leftovers in the mini bar and I spent the night watching TV.

Friday, November 6, 2008
An exciting day. I woke up to the nurse telling me that she was removing my foley.  Did you all hear my sigh of relief at around 5:30 in the morning EST?   I was up and after a visit from Dr. B  - he allowed me to shower..  I walked to the nurses’ station and begged for some clean gowns and towels, then, I showered.  I knew that it was going to be a good day.  I had a great visit with Sherie the Transplant Social Worker, and my breakfast tray was delivered with coffee on it!

I was wheeled to ultrasound for the final time to scan my legs for any blood clots, then promptly brought back to my room.  And pretty soon, I heard a familiar voice entering the room.  Bill settled in, whipped out his laptop and told me to post, then we ordered pizza, the picture was taken, and we had a visit from Maddy the Transplant Coordinator who went over my discharge and meds.  After lunch, Bill was headed back to ASN/Renal Week in Philadelphia for an evening dinner, and I went back to bed to rest, but it was not to be. First I was visited by the dietician, then, occupational therapy, we walked the hall and then I got a drink out of the mini bar to show that I could reach, and she cleared me to go home.  I got back into bed, and the Physical Therapist showed up to walk me in the hall and do two flights of stairs to prep me to go home.  I got into bed and then the chaplain visited, it was while I was chatting with her that Dr. B showed up, sorry that he missed Bill (he reads the blog) and then he walked to the mini bar, took out cans and bottles, and told me “This isn’t a social visit, drink all of this, I want you to pee”.  He then whipped out his very cool lap top, asked me why I wasn’t blogging and he read Renal Web while I drank.  Soon enough I was able to pee on demand, and he was satisfied with everything and said good night.  For him it may have been a good night, I was up all night going to the bathroom; I must have drunk 30 oz.

I also had a visit from two friends, but I have to admit, I was wiped out.

Saturday, November 7, 2008
It was a rainy miserable day, and my breakfast tray had sanka on it.  The residents came in and changed my dressing from abdominal pads to gauze, I puttered, watched TV and my friend Cristiane came to visit.  I learned that ordering Swedish meatballs not a good thing and I also learned that CellCept can wreak havoc on your GI system.  This was not a good bodily fluids day.  But I got the news that I was being discharged on Sunday, so honestly – who cares, I was going home!

Sunday, November 8, 2008
I was home by 5pm, and I walked into my little apartment exhilarated and exhausted, greeted by a blooming geranium and a humming NxStage Machine.  How can I put into words the relationship that I have had with this machine still sitting by my side?  For a year, it gave me freedom and health - a few administrative headaches, but overall, I credit it for keeping me in the best possible shape I could be in.  Soon enough, it will be passed on to another person, and then they too will benefit from home hemo.  The first thing that I did when I walked into my apartment was unplug my dialysis machine, after all, it is now unplugged, and so am I.

Complimentary not Competing

By Anna Bennett

It is just over a  week since my last post, I am sitting in my living room, in my dialysis chair, my NxStage sits next to me, but it is unplugged, as am I.  My donor's kidney cleans my blood now, and I will do everything in my power to keep his kidney healthy, so literally, after death, a part of him lives on.  That is my responsibility.

My transplant experience was great.  My transplant team is amazing, headed by Dr. Alan Benvenisty, my Transplant Surgeon, a man who came highly recommended in 2005 when I went to him to be worked up for the UNOS list, and in my case he has exceeded his sterling reputation. 

I have been on my CKD journey since birth, as I am second generation PKD, I was well educated on CKD and monitored all of my life.  I learned that being pro active in your medical care improves your quality of life.  Because of High Dose Home Hemo Dialysis (HDHHD), I was in the best possible shape that I could have been in for my transplant.  While I was in the hospital, I saw the Halo Effect in action, and I  was able to speak with medical professionals (Nurses/Fellows/Residents) who were amazed that HDHHD and NxStage existed.

This is a communication problem that is costing lives.  Every medical professional should know that HDHHD technology exists.  Just as in the inroads with diabetes therapy, (insulin pumps,glucometers) HDHHD needs to up it's profile.  HDHHD can either be a bridge, as it was for me, (I was qualified and motivated for a transplant)  - or it can allow someone to live a vital/full life when transplant is not an option.

So many times, I have seen in support groups a polarization for one therapy or another.  These therapies are not in competition.  Just as in my case, HDHHD kept me in the best possible condition to have a successful transplant.  My three and a half year wait for a kidney is proof positive that there aren't enough kidneys around for the ever growing CKD-5 population. 

And, as for me, my new kidney started working on the table, and has brought my Creatinine down from a 6.8 to 1.3, my body is reaping the benefits.  I am adjusting to the immunosuppression and I am being very well taken care of by my transplant team.  

Aussie transplant perspective 10 days in along the journey

By Melissa Darnley

Bill said that I was allowed a post before I was booted off for being a urinator so here goes!

Received a kidney from my wonderful husband 10 days ago and today I feel fantastic. Have been thinking about transplant for a long time with a fair amount of fear and trepidation for us both, particularly as I had FSGS which can reoccur in the donor kidney but I am trying not to dwell on that now. So far so good. Creatinine was 132 today so it has been going down steadily and no protein in the wee.

When we checked into PA hospital in Brisbane the impact of what was about to be done to us both hit home. I admit to being frightened but then you get carried along by this freight train (and run over in the process). The Public Health system here in Australia is pretty incredible. Everything is free, there are hot and cold running specialist, surgeons and nurses who whisk you away for every test 24/7. You are monitored constantly as you learn to monitor yourself every day for the first 4 weeks as an out patient then it gradually tapers back to every few months. just knowing that you can ring and speak to someone and be looked after effectively any hour of the day or night is incredibly comforting.

The actual op was over for both of us and we were both up walking the next day. No pain relief other than a few Paracetemol by Day 3.  We both have some discomfort when sitting and getting up but hey ! Amazingly good.

All the drugs are subsidised so we only pay a couple of dollars as is transport and accommodation as I have to stay in Brisbane for probably the first 8 weeks.

Andy unfortunately had to come out with a temporary catheter as he is withholding urine but we hope that has rectified itself soon. He is being amazingly positive about it all and is just so happy to see me doing so well and no nocturnal dialysis for 12 days now.

All I can say is this whole journey has been surreal and I would do it all again if I have to. Just seeing all these people with new kidneys and livers improving every day and thinking about the prospect of a free and healthy life ahead of them is so amazing. The organ donor rate in Australia is not good and there are a lot of flaws in the process of getting donor families to approve the removal of a deceased loved ones organs but wow the lives that are saved along the way is mind boggling.

A second early morning phone call

UPDATE BELOW

By Anna Bennett

What is it about Sunday at 7am?  Is that going to be my fate?  It looks like in my case, Saturday night is a good night for kidneys.  Not a good night for a 32 year old man in good health was found in cardiac arrest.  No mater what his problems were, his final gift was signing his donor card, and for that I am thankful. 

Of course, as I write this, I am second on the list for one of his kidneys, and I am waiting to hear from the hospital.  It is funny that as I was speaking to the transplant coordinator, one of the first thoughts running through my head what that I have plans for this week, a transplant is definitely going to complicate things.

As my time comes closer for a transplant, I am aware that there are many changes coming up in my life.  I'll be swapping daily dialysis for a daily drug regime that may cause the dreaded prednisone face.  (I'll admit it, I am a bit vain), there could be some serious complications, the kidney may not work, and no matter what, eventually, I'll be back on dialysis again.  There is nothing like living different scenarios in your head as you wait for a phone call.  It is a unique experience.  I am dwelling on the bad, as I know that my life as it is right now is good, and with a transplant, (the ultimate portable renal replacement therapy) I'll be planning a month in Europe, showing off my transplant scar and catching up on all that I have missed.

Until then, I am going through the motions of what one does when you get the call.  Stop eating (I cheated and made coffee - I could not survive without a cup of coffee), make sure that my home is in order, dishes clean, a hot shower with liberal use of antibacterial soap, clean sheets on the bed to come home to, old leftovers out of the fridge, garbage out of the house, overnight bag packed remembering the extra phone charger, list of phone numbers and e-mails available, bills paid for the month etc.  I live alone, my family is 3,000 miles away, and I haven't told anyone yet, because I have decided that I'm not alerting anyone until the transplant is a sure thing.

In a couple of hours, if I don't recieve another phone call from the transplant center, I'll prime my dialysis machine, eat some breakfast, and Sunday morning will commence as it does every other Sunday.  These phone calls are like a military drill, you prepare for the invasion, but so far all I have done is prepare, then the hours go by, the kidney goes to someone else, and I stand down, and go back to my normal routine.

8:48 am - it is not a false alarm, the kidney is mine.  I am on my way to the hospital.  Details to come...

UPDATE 11/5

I've been talking to Anna - she is extremely bored but now, at last report, has a creatinine of 1.3, which I believe is close to normal for an adult female. I am sure we'll see an update from her at some point - I'll let her keep her posting privileges for a bit to at least let her fill us in on her adventures in nursing.

UPDATE

Transplant the first week

A date with a new kidney!

By Melissa Darnley

October the 31st is the date set for my hubby Andy to donate his kidney to me!

It's with mixed emotions that I post this. On the one hand I am very excited about the prospect of a new life and then on the other I know there are many, like some of my internet friends, still waiting for their time to come. I also have concerns about my FSGS reoccurring and what I am putting Andy through. We have been through so much together over the last 32 years, it just never seems to get any easier.

Enough of the scary thoughts- we are being 'done' at Princess Alexandra Hospital in Wollangabba, Brisbane, Queensland which has a great reputation and by Aussie standards does a fair few transplants (around 2 a week). I know we are in great hands and will get the best of care.

I have been on dialysis for over 3 years , most of it at home on Nocturnal. This has been great but does require a huge commitment for both of us and has impacted on our life on many occasions. The lack of holiday dialysis places in Australia has made things difficult and we have missed important family events as well as some respite.

I have been on the transplant waiting list in my state-NSW- but the length of time has blown out to around 8 years for an O kidney so Andy started doing the testing (even that has taken 9 months) We waited til this year because I was advised to wait 5 years after a Melanoma was removed (too much sun and surf when I was younger and immunosuppression when trying to slow down FSGS progression but that's another story).

I never thought we would get this far down the testing with Andy but here we are and its all systems go. Its hard when its your life's partner as you have to pack up and move yourselves to the city for the transplant and have the extra stress of worrying about how your partner is going to cope as well as yourself. But having said all that, we are ready for this next part of life's journey. Will keep you posted. All the best to everyone.
Cheers
Mel

Financial Incentives for Renal Transplantation: False Hope for Americans with CKD

By Peter Laird, MD

In my post last week on the false hope of financial incentives for renal donation, I used 75,000 (500% of current levels) as an arbitrarily high level of renal transplantation to demonstrate that even such an unreachable goal would still fall short of Japanese mortality levels achieved without the benefit of renal transplantation.  Zoran Lazarevic responded and compared successive annual survival rates over the course of seven years with 75,000 transplants/ year vs 15,000 transplants/year arriving at the conclusion that this level of transplantation would exceed the Japanese survival rates after 7 years. 

Zoran’s point is interesting but not reflective of the actuality that 105,000 new CKD patients/year are added here in America which needs to be included in this actuarial analysis.   

In the last five years the USRDS has noted a continued growth in the number of treated patients, but a slowing of the incident rates. More than 106,000 new patients began therapy for ESRD in 2005 (2.0 percent more than in 2004), while the prevalent dialysis population reached 341,000 (3.3 percent more), and the prevalent transplant population grew to more than 143,693 (5.6 percent more). Both prevalent populations have more than tripled since 1988, while the number of incident patients has grown 159 percent. Since 1999, however, incident rates have been relatively stable, ranging from 333.1 per million population that year to 347.1 in 2005.

I cranked out by hand 15 years of data with a 2% increase in new CKD patients/year, 75,000 transplants per year with 5% mortality/year, and 25% mortality/year for those remaining on dialysis and starting with a cohort of 350,000 patients as Zoran did.  Contrary to Zoran’s conclusion that survival in America would exceed survival in Japan at seven years, we instead find that it would take 7 years to equal Japan’s mortality rate of 10%.  After 15 years, the total CKD-5 mortality rate with 75,000 transplants/year would still be 9.2% which is within Japan’s average published mortality rates of 8.5-10%.

The significance of this number is that we have established 75,000 as the minimum number of annual renal transplant surgeries that America would have to perform to equal the total survival benefit of optimal dialysis already practiced in Japan for decades. At best, America is only able to muster approximately 15,000 renal transplants each year now and the expected benefit of financial incentives is to increase this number by 10-20%, not 500% as I have done in my hypothetical analysis.  Certainly, there is no medical capacity in America to perform anywhere near 75,000 renal transplants at this time even if that number of donors were somehow available. 

The current emphasis on financial incentives for renal transplantation lends a false sense of hope to American dialysis patients because there shall only be a small number of patients that benefit from renal transplantation even with financial incentives, while the vast majority of patients will suffer an unduly high level of mortality who are treated with usual, incenter, three days a week dialysis.  It is unfortunate that the advocates for renal donation financial incentives have not taken to heart that optimal renal care for all CKD-5 patients in America is complementary and not competitive to their goals.  Optimal renal care for all patients, not just the selected few, will reduce costs, improve patient outcomes, and reintroduce quality renal care back to America that we now shamefully lack.

New Hope On Organ Donation? Or False Hope for Americans with Chronic Kidney Disease.

By Peter Laird, MD

Senator Specter (R-PA) has entered the arena of the payment for organ donation controversy with the Organ Donation Clarification Act of 2008 that if passed will eliminate some of the prohibitions against financial incentives for organ donation established in the The National Organ Transplant Act of 1984. 

The call to action voiced by all that support financial incentives for renal donation is America’s exceedingly high renal related mortality. This is even more tragic for those that will die while waiting on the renal transplant list to receive the “gift of life."  However, I am continually troubled by the rightful outrage shown for our 25% average annual mortality of American CKD-5 patients that is wrongfully diverted into the false hope that an organ procurement system will significantly reduce this unacceptable death rate.

Those that support financial incentives for organ procurement are growing in strength in America and I concede that it is likely only a matter of time before this experiment begins in earnest:

In a letters to all 100 U. S. Senators, AAKP President Roberta Wager, RN, MSN, states, “As the waiting list for organs grows ever longer, it is time to allow government controlled trials of financial incentives to help increase the number of organ donors. A financial incentive is not necessarily a cash payment: for example, a donor could receive something as simple as lifelong health insurance, or families could receive funeral benefits for the deceased donors.”

A kidney specialist at Beth Israel Medical Center in Manhattan, Richard Amerling, agrees. "Transplantation provides the best quality of life and survival. Arguments against compensation such as exploitation of the poor, 'commoditization' of the body, and the loss of altruism, are all extremely weak, especially in the face of high mortality on the waiting list."

Nevertheless, I have not once seen data showing expected renal donation rates once these financial incentives are enacted.  For the sake of argument, should the renal donation rate expand by an unrealistic estimated 500 percent (approximately 15,000 transplants to 75,000 transplants/year), what impact would this have on annual American chronic renal disease mortality rates?  Looking at hypothetical estimates using a widely touted 5% annual mortality post renal transplant is instructive:

A)  Current American CKD-5 Death Rate:

350,000 CKD-5 patients with 25% mortality = 87,500 deaths/year

B)  Estimated Death Rate Reduction with 500% Increased Donation from financial incentives:

75,000 CKD-T with 5% mortality = 3,750 deaths/year
275,000 CKD-5 with 25% mortality = 68,750 deaths/year
Total: 72,500 deaths/year

This would be a significant reduction in annual mortality of 15,000 American CKD-5 patients each year and would entirely eliminate the renal transplant wait list.  Yet, even with a hypothetical 500% increased renal donation rate from an incentivized financial system that completely eliminates the renal transplant list, American CKD death rates  would still be substantially higher than that which Japan has achieved for decades with it's consistent and successful approach:

Differences in Dialysis Practice Are the Main Reasons for the High Mortality Rate in the United States Compared to Japan (Carl M. Kjellstrand, Christopher R. Blagg)

The cumulative survival of Japanese hemodialysis patients is more than 2.5 times better than that of dialysis patients in the United States (U.S.). The difference is particularly pronounced in older patients, being 4 times better in patients over the age of 50 years. The mortality in U.S. patients has increased from 10 to 25% over the last three decades, but has remained stable at around 10% in Japan.

There is no obvious difference in patient selection. The Japanese accept almost as high a proportion of diabetic patients as does the United States, and the mean age of incident patients is higher in Japan.

Renal transplantation, virtually absent in Japan, should increase mortality in U.S. dialysis patients by removing patients with the highest probability of survival, but even if one adds surviving transplant patients and studies prevalent populations, the survival rate is much better in Japan. Genetic factors are unlikely to explain differences in mortality, as older Americans live much longer than older Japanese.

We speculate that the difference lies in the practice of dialysis. Patients in the United States are generally treated by much faster and shorter dialysis than in Japan. This puts a severe burden on the cardiovascular system of older patients, leading to the poorer survival rate. Japanese physicians also appear to be better trained in dialysis and to spend more time with their patients. The nursing shortage in the United States may also contribute to the increased mortality. Whatever the explanations, the U.S. dialysis community must work to equal and, hopefully, surpass the now superior survival of Japanese dialysis patients.

C) Estimated American CKD-5 Death Rate with 10% annual mortality:

350,000 CKD-5 with 10% mortality = 35,000 deaths/year
      

The American CKD-5 death rate with a complete elimination of our current transplant list with no change in usual dialysis practices for the remaining CKD-5 patients would still be twice the death rate that could be achieved if America adopted the same optimal dialysis practices of Japan for all patients, not just the selected few.

My personal opinion is that American dialysis patients are given false hope when politicians, ethics professors, medical doctors and "resident scholars" place the well being of my fellow renal patients in the hands of those that proclaim a “New Hope”  in unethical renal donation financial incentives when the old hope of a humble Japanese people tolls the truth of our shame.  I feel betrayed by my own colleagues who have ignored the simple truths of optimal dialysis for the unachievable holy grail found in payment for organ donation ethics.  It is a false hope that shall leave many dead in its wake with much pain, suffering and torment that could have been avoided by universal adoption of the same sound optimal dialysis methods that we have already known about for years.

Aussie Prime Minister's landmark speech on Organ and Tissue Donation and Transplantation

Posted by Melissa Darnley

Prime Minister Kevin Rudd  

AUSTRALIAN ORGAN AND TISSUE DONATION AND TRANSPLANTATION AUTHORITY BILL 2008
18 SEPTEMBER 2008

I move:

That this bill be now read a second time.

Earlier this year we opened up the doors of Parliament to the people of Australia for the Australia 2020 Summit.

We did so looking for new ideas for our nation’s long term future.
Ideas for tackling the nation’s future challenges.

Many constructive ideas came forward, and later this year the government will be responding to each of them.

One of the key ideas discussed for the future of Australia’s health and hospitals system was to establish a national organ donation scheme.

And that is why today I introduce, with some pride, to the House the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008.

This is to provide the national leadership that Australia needs to lift organ donation rates and make it possible for our expert transplant doctors and health professionals to save many more lives, and return many Australians to good health.

For too long, organ donation rates in Australia have lagged behind many other nations, despite high levels of community support for organ donation.

For too long, Australians have been left desperately waiting, month after month, for a transplant that could mean the difference between a normal, healthy life and debilitating chronic illness.

And in some cases, the difference between life and death.

For too long, people have talked about the need to lift organ donation rates but there has been no national leadership to take action on that goal.

And for too long, we have failed to act despite projections of a rising prevalence of chronic disease, an ageing population and, as a result, increased needs for organ transplants.

Last year, we made it clear that this government intends to end the blame game between the Commonwealth and the states and take responsibility for reforming our health and hospitals system.

That the government I would lead would get on with getting things right.
Today, the government delivers on that commitment.

Today, I stand before the House to move a bill that forms a central part of a national plan to reduce unnecessary suffering for thousands of Australians who are waiting for transplants.

Today, I move a bill that will help to honour our commitment to establishing Australia as a world leader for organ donation and transplantation.

As Australians we are fortunate to live in a nation that has long been a world leader in the clinical outcomes we achieve for transplant patients—a nation where more than 90 per cent of people support organ donation. Yet we are also a nation with a very long, far too long, waiting list for transplant procedures.

At any one time there are 1,800 Australians currently on waiting lists for an organ donation that could save or transform their life.   

Last year, there were just 198 deceased organ donors in Australia.
This resulted in 657 transplants—meeting just one-third of demand.
We should not tolerate so many Australians languishing on waiting lists for want of national leadership to lift organ donor rates.

Despite the high quality of clinical care across our nation, we lag well behind many other developed countries in organ donations.

The International Registry of Organ Donation and Transplantation reports that, in Australia, there were just 9.8 donors for every one million people in 2006.

In contrast:

• Spain had 33.8 donors for every one million persons—more than three times higher than Australia.
• The United States had 26.9 donors for every million persons—more than 2½ times the rate in Australia.

While Spain and the United States are world leaders respectively, Australia’s ranking for organ donors per million population was behind Belgium, Austria, France, Italy, Ireland, Hungary, Czech republic, Norway, Germany, Sweden, Canada, Poland, the Netherlands, Argentina, Denmark, Switzerland and the UK.

We need to do much, much better.

This is simply not good enough—not for today, and especially not for the future.

In the decades ahead of us we will have an older population, and a population with a much higher incidence of chronic diseases such as obesity and type 2 diabetes.

Several of those chronic diseases can result in the need for a transplant.

Consider kidney disease.

More than three-quarters of people waiting for an organ transplant are in need of a kidney.   

Even now, one in three Australian adults face an elevated risk of developing chronic kidney disease.   

And the incidence of kidney disease is almost certain to rise further, because of its link to other chronic diseases.

Australia also has a high prevalence of hepatitis C infection.

Hepatitis C infection causes increased rates of chronic liver disease, resulting in a greater need for liver transplants.   

There are many other donor organs that are likely to be in greater need in the years ahead.

The long waiting list for transplants also imposes significant costs on our health and hospitals system.

For example, the cost for each person waiting on a kidney transplant is $83,000 per annum if they are receiving hospital based kidney dialysis.

In contrast, the cost of a kidney transplant is just $65,000 per recipient for the first year, and only $11,000 for each year thereafter.

Australians awaiting a transplant require extensive, expensive and time-consuming treatment.

That can make it harder for them to carry on work, to play an active role in their community and to enjoy a reasonable quality of life, all of which are important.

Lifting organ donor rates will help us build a more efficient health system and help sick Australians back to full participation in work and in the community.

But above all the reason why we must lift the number of organ donations is that, by doing this, we can help save and transform the lives of thousands of Australians of all ages.

Let me mention just one example.

A fortnight ago I informed the House that I had privilege of meeting with Cordelia Whatman, her parents, big sister Octavia and grandparents.

Cordelia had just returned home to her family and to Canberra after four months in hospital.   

For those of you who are not familiar with Cordelia’s story, she was diagnosed with biliary artesia at 10 weeks.

Biliary artesia is a chronic liver problem that affects vital body functions.

Having undertaken an unsuccessful procedure in July 2007, Cordelia had been suffering from severe jaundice, a broken leg, lethargy, debilitation and inability to gain weight.

But just a few weeks ago, that all changed.

And it all changed for one reason—a donor organ became available to her.

The transplant operation was performed at the Children’s Hospital at Westmead in Sydney. Cordelia had a 13-doctor medical team, headed by Dr Albert Shun and Dr Michael Stormon. Each member of that team is to be congratulated.

Shortly after, Cordelia was discharged from hospital, the transplant operation a success.

Cordelia had to wait more than a year on a transplant waiting list.

During that long wait, Cordelia was becoming increasingly sick.

Indeed, the doctors had declared an operation urgent, and Cordelia’s mother was only days from providing a liver donation herself.

That operation could have placed her mother’s life at risk.

But it was made unnecessary when a donor organ finally became available.
Today, Cordelia can look forward to a healthy life—because of the selfless act of a donor and their family. And we thank them.

Cordelia’s donor also provided six other organs, potentially saving the lives of others with their decision.

In Australia today there are some 30,000 people who like Cordelia have benefited from an organ or tissue transplantation in this country.

We have some of these people with us here today, as well as some who are among the 1,800 now waiting for a transplant.

I would like particularly to acknowledge some of them who are with us today in the gallery:

Felix Bulmer, aged 17, who benefited from a corneal graft that has dramatically improved his vision; Russell McGowan, who has had a bone marrow transplant; Marjorie Taylor, the mother of Annette Taylor, who expressed her wish to become an organ donor before her death at the age of just 13. Marjorie took it to then Prime Minister Whitlam to ensure that her daughter could go through with her wish—and so she became the first organ donor in the ACT.  That was more than 30 years ago.

These are just three of the 30,000 Australians who can tell a story of how an organ transplant can transform your life.

Transplantation make it possible for people of all ages to enjoy those things that we too often take for granted—the ability to live free of debilitating disease, the ability to live a fit and active life, the ability to continue as a healthy member of their family and community.

The government is determined to make transplants possible for many more Australians.

And that is why—and that is the only reason why—this bill is before the House today.

When we look the nations that have enjoyed most success with organ donor rates, we learn one clear lesson.

National leadership is needed to drive the change necessary to improve rates of organ donation.

The nations that lead the world in organ donation and transplantation rates all have national systems to coordinate and drive this program actively within each individual hospital.

These national frameworks are supported by ongoing community and professional education.

The bill that comes before the House today reflects international best practice.
It forms a core part of the reform package that the government announced on 2 July this year, to lift Australia to world’s best practice in organ and tissue donation for transplantation.

The government has committed $151.1 million towards this objective, including $136.4 million in new funds. This is not cheap. To do it well takes money, and we are determined to invest this money.

And this package was endorsed by the Council of Australian Governments when it met on 3 July.

The national plan consists of five key steps:

1. $46 million to introduce a coordinated, consistent approach and systems under the leadership of a new, independent national authority—the Australian Organ Donation and Transplantation Authority—that is established under the bill that is before the House today.
2. $67 million to employ trained medical specialists and other staff dedicated to organ donation who will work closely with emergency department and intensive care unit teams in selected public and private hospitals across Australia.
3. $17 million in new funding for hospitals to meet additional staffing, bed and infrastructure costs associated with organ donation.
4. $13.4 million towards raising community awareness and building public confidence in Australia’s donation for a transplantation system.
5. $1.9 million for counsellors to support donor families.

This is a comprehensive plan, based on international best practice, that aims in the long term to establish Australia as a world leader in organ donation for transplantation.

It will mean that:

• potential donors are properly identified at hospitals across the country;
• every family of a potential donor will be asked about organ donation;
• a dedicated specialist will work with the potential donor and their family to provide support through what is often a very, very difficult process;
• hospital staff will be able to focus on donor care knowing that the hospital has a separate budget to cover organ and tissue donation;
• families receive the support they need at the time of organ donation and afterwards; and
• there is an equitable and safe process for managing transplant waiting lists and allocating organs once they become available.

One of the most important parts of this plan is to tackle the point at which our organ donor system is currently failing.

That is in the emergency wards and intensive care units of our hospitals.

Currently—and this is the core, practical problem—we do not have dedicated staff trained to help families through the difficult circumstances which they confront at that point and under which they may consent.

And with the pressures placed on our hospitals—and they are great—it is often difficult for clinicians to have these sensitive and delicate conversations with the families of potential donors.

This problem is compounded by the lack of dedicated hospital resources to manage the clinical procedures necessary for an organ or tissue transplant.

This explains why, despite an increase of one million in the number of organ donor registrations since 2002 to a total of six million registrations, there has been no increase in the number of lives being saved through transplants.

That is what we are trying to solve and deal with through this legislation.

The majority of resources in the national plan will be dedicated to addressing this particular practical problem.

The Australian Organ Donation and Transplantation Authority will work with states, territories, clinicians, consumers and the community sector to build a world leading system for Australia.   

The Authority will:

• coordinate clinicians and other hospital staff dedicated to organ and tissue donation in hospitals across the country;
• train professional staff to do that;
• oversee a new national network of state and territory organ and tissue donation agencies;
• introduce and manage a national data and reporting system;
• lead ongoing community awareness programs about organ and tissue donation and transplantation; and
• work with clinical and professional organisations in developing clinical practice protocols and standards.

The Authority will enable all families of potential donors to be asked about donation.

It will work with clinicians, hospitals and community organisations to educate people about donation, support families through this decision, and make sure that suitable patients will be considered as potential donors.

It will encourage Australians to discuss their wishes with their family—it is a very difficult conversation to have—and provide every family of a potential donor the information, knowledge and support to choose donation.

And as a matter of reassurance, I note that the bill before the House today will in no way impede or restrict existing regulations for ensuring the safety of organ or tissue transplants.

Since making the announcement earlier this year, the government is getting on with the task of putting this system into practice.

All state and territory governments have signed up to the best practice national plan—and I thank them for it. Each of the states is working under the leadership of the Commonwealth Chief Medical Officer to implement this plan.

Work is on track to establish the national authority by 1 January 2009.

The positions of CEO and Medical Director of the new Authority have been advertised.

Recruitment for new medical and nursing jobs in hospitals will commence as soon as possible.

Preparation for a national community awareness campaign for launch in early 2009 is underway.

I would like to conclude my remarks on this bill with a few additional points.

First, I would like to thank those organ donors and the members of families who have lost loved ones and who have assisted at a time of great personal distress and difficulty for them.

Second, I would like to say thank you to the organisations that have played such an important role in promoting awareness of the importance of organ donation and who have helped the development of the government’s national plan:

• The Transplantation Society of Australia and New Zealand;
• The Cognate Committee on Organ and Tissue Donation;
• Transplant Australia;
• Gift of Life;
• Zaidee’s Foundation; and
• ShareLife.

I would also like to acknowledge the contribution from the Chief Medical Officer, John Horvath, as well as Jane Halton, the Secretary of the Department of Health and Ageing.

Second, on a personal level as recipient of a tissue transplant some years ago, I want to place on record my own debt of gratitude to the doctors, the health professionals and the community that has promoted organ and tissue transplants for so many years.

Finally, I would like to make an appeal to all Australians.

If you are not now on the organ donor list, please think about it and get your name on to it. Maybe that is a practical challenge for us all here: to make sure in the next few weeks that every member of this House and of the other place has made sure that they have made that decision with their family.

I would also make this appeal to the nation’s media: get behind this particular proposal. I thank the media for the work that they have already done. I have noticed that whenever our friends in the media get behind this, and we have good and positive stories of successful transplants, one thing happens: effective donation rates go up. This is a critical piece in the jigsaw. I thank the media for what they have done and I encourage them to continue to do it into the future. It really does help.

I appeal to all Australians to talk to their family about this matter. Your family makes critical choices if ever the day arrives when it might be your organs that can save the lives of others.

It is an extraordinary gift of an individual and their family, made in often very tragic circumstances.

Mr Speaker, lifting the level of organ transplants in Australia requires a cooperative and concentrated effort from the Australian government, from state and territory governments, from health professionals, from community organisations and most of all from the whole Australian community.

This bill is a major step forward in coordinating our nation’s efforts to save lives and restore quality of life for thousands of Australians.

I thank the officials for their work in preparing this bill, given that I have been more than usually demanding in making sure that this bill was ready on time. I thank them for it, because they have really worked up against it.

So my challenge to the nation is: let’s get on with it.

I commend the bill to the House.

 

Where is my kidney coming from?

By Anna Bennett

Bill's post The price of high gas prices got me thinking about my upcoming transplant, after all, I've been on the UNOS list since June 2005, I've already gotten one phone call, surely I'll get "The" phone call soon. Well, according to recent data - maybe not. 

Is it a coincidence that gas prices were expected to peak in June 2008, and deceased donors plummeted.  I just spoke with my Transplant Coordinator, and she said "it is a slow time for kidneys".

In August, the first kidney that was offered to me was from a 54 year old stroke victim, although I did not receive that kidney, I did get me an idea of what to expect the next time a match comes along.  I wonder, with the rising price of gas, will it be from a person who has died in an auto accident?  Has the current economic climate caused a scarcity of organs?

UNOS keeps track of transplants UNOS publishes their data, and you can request more in depth data as needed - while I am not able to dig deep enough to find out if auto accidents caused the deaths of the deceased donors (the yearly data provided does not list auto accident in the detailed breakdown), we can look at the overall monthly numbers (I was only able to get the numbers through June 2008):   
                      
Number of Deceased Donors in the U.S. by Month*

                                 2007           2008          Change   
Jan                             648             635             - 13         
Feb                             618             684 **         + 66
March                         676             655             - 21
April                           705             692             - 13
May                            702             712             +10
June                           687             646             - 41

For reference, the US DOE keeps a Weekly Retail Premium Gasoline Prices (Including Taxes) which reflects that the price for one gallon of gas the week of June 30th was $4.33.

An ethical question is:  Will this decline in availability add fuel to the fire for the legal marketing of organs?  Is the need so great that it would further push this agenda?  Already we have desperate people flying overseas to purchase kidneys, what is this economic climate creating?

Bill wrote What can kidney dialysis teach us about kidney transplantation? comparing early dialysis "God Committees" to today's overwhelming need for kidneys.

Peter addresses organ purchase/trafficking in a few posts.  It is a highly controversial subject, and I believe a subject that will keep appearing in the headlines as long as the demand is so high.

*  Based on OPTN data as of September 5, 2008, Data subject to change based on future data submission or correction

** February '08 is a leap year, and had 29 days v. 28 days in '07

The price of high gas prices

by Bill Peckham

Yahoo news has a story up Traffic fatalities driven down by high gas price. It's an interesting story:

according to the Transportation Research Institute at the University of Michigan ... [the] study — which covers 12 months ending in April — found that as gas prices rose, driving and fatalities declined. The surprise, said Professor Michael Sivak, author of the study, was the huge decline in fatalities in March and April as gasoline prices surged above $3.20 a gallon.

If the decreases hold up it could mean over 7,000 fewer deaths this year ("For the past several years, the number has hovered above 42,000 a year"). The article points out that not only are people driving less they are also driving more slowly in an effort to save gas. People in rural areas are impacted more accutely by high gas prices than people in cities:

Federal data also shows that driving declines have been more dramatic on rural roads, which have higher accident rates than urban highways.

This is good news - a lot of grief has been avoided - but there will be an impact on transplant organ availability. Traffic fatalities are a prime source for transplant organs. People who die in traffic accidents are generally healthier than those who die of medical causes, they often receive medical care within minutes of the injury and the type of death is often conducive to donation.

The federal highway fatality numbers for 2008 won't be available until next year but the data from the Transportation Research Institute indicates we should already be seeing a decrease in the availability of postmortem organs.

Requiem for the Dead Donor Rule

By Peter Laird, MD

In this weeks NEJM, doctors from Denver Children's Hospital report three cases of non heart beat organ donation from infants that questions the survival of the Dead Donor Rule.  The Dead Donor Rule is the agreement of trust between the medical community and the parents and families of those that have donated their organs that the act of donation will not in itself be the actual cause of death.  This long standing agreement is now in doubt since many conclude that the death of these infants was by these acts of organ donation and should not become standard medical practice.

"This practice cannot be ethically justified," said George J. Annas, a Boston University bioethicist. "The donors are not dead. I understand that they would like us to change the definition of death, but they can't do that by themselves. It's very problematic to start treating a baby as an organ donor before it's dead."

Robert M. Veatch, a Georgetown University bioethicist, went further, saying the deaths were equivalent to murder.

"The whole issue is whether the infants from whom the hearts were taken were dead. It seems very clear to me that they were not," he said. "I think it's illegal, and if it's illegal, what we're talking about is the physicians causing the death of the three patients, and that would be homicide. It's immoral. I think it should be stopped."

Changing or eliminating the Dead Donor Rule as a means of averting this conflict is supplanted by suggestions  to “amend the definition of death so that the total loss of those brain functions that are responsible for consciousness would be the basis for pronouncing death.”

Considering the relatively small number of patients in need of pediatric heart donations that may benefit from such changes to the definition of death, should we not instead consider the great potential harm to our entire society if death is subjectively defined as the loss of higher brain functions?

Certainly, that change in the definition of death could open the door to euthanizing Alzheimer patients, terminating severely brain damaged children and perhaps even those who have lost contact with reality from mental illnesses.  There are great dangers to all in our society that accompany such changes to the basic “definition” of death that will not only apply to the unfortunate infant dealt severe and irreversible neurologic injuries, but all could one day be subject to that same definition. 

How far shall we go in pushing the limits of ethical organ donations in this nation?  The dark consequences of utilitarian good cannot be ignored to the detriment of those that have forgotten similar actions in previous generations. 

Most Iranian paid donors would not donate again

by Peter Laird, MD

In the ongoing debate over payment for organ donation, I recently came across a 2002 article on the Iran experience and retrospective interviews of 300 kidney vendors (paid donors). Contrary to the many glowing and positive statements on the Iranian system, the actual donors in this country do not view their own post donation experiences in a positive manner:

In a country where brain-stem death is not recognised by law, the system has virtually eliminated recipient waiting lists. Members of the CFSD have claimed that the regulated system is a "new chapter in the world's transplantation history," a "development in donor-recipient relationships" and "an innovation in the Islamic Republic." However, two studies done by Javaad Zargooshi from the Department of Urology at Kermanshah University of Medical Sciences, Iran (The Journal of Urology, Vols. 165 and 166), show otherwise.

Zargooshi interviewed 300 kidney vendors six to 132 months after the transplant operation. His findings offer a frightening insight into what a regulated kidney trade in India might look like.There are reports that 70% of the donors suffered from post-operative depression and 60% from anxiety. Several donors said they had attempted suicide and spoke of donors who had killed themselves.278 70% of donors said that they felt worthless after the operation and 85% stated that if given the chance to go back in time, they would not donate their kidney and would also advise others against donating or selling their kidneys or any other organs whilst still alive. A large number of sellers spoke of not being socially accepted and demonstrated increased marital conflict following the kidney sale.   

I would caution all commentators and promoters of a legal, payed renal donation system from using Iran as a positive model for the rest of the world.  Not only do the actual vendors voice a negative experience with payed donation in Iran, but Iran also discriminates against woman as recipients and those over the age of 50.  The Iranian model so widely cheered is a very flawed and biased model. 

The negative experience of the donors leads us to once again remember the physician's dictum to first do no harm. There remains many troubling issues with the concept of a payed legal donation system.

An early morning phone call

by Anna Bennett

Last night, a 54 year old woman had a stroke and was declared brain dead. 

Thanks to her decision to be an organ donor, she has entered my world, and her family's loss could be a gift to mine.   My phone rang at 7am.  It has been an emotional roller coaster of a weekend, and I didn't recognize the number, so I didn't answer it.  I wiped the sleep out of my eyes, and listened to the message.   It was my transplant surgeon, there is a kidney available with a 50/50 chance that we'll get the kidney.  The kidney is considered extended criteria. There was a history of hypertension.

At first we had a slight communication problem.  My Surgeon was just getting home after a night of operating, we were both on cell phones and I was discussing rejection hypotheticals.  He thought that I meant rejecting the kidney pre-surgery.  I was talking post surgery.  We talked about graft survival.  Then we came up with a great metaphor.  Me, at 42 well, I am a Ford Escape, high mileage, wear and tear on my body, and my kidneys are shot.  I'll never get a 21 year old Ferrari of a kidney.  For personal reasons (much to my surgeon's chagrin), I won't accept a living donor.  In my situation, with a non-living donor, we are dealing in used Ford Tauruses. 

So, the question is, is it worth it?  This will be my first transplant.  An extended criteria kidney will buy me a few years off dialysis (at best).  My PRA's will be elevated, and when the graft finally fails, the clock will be back at zero for my next transplant.  At that point, I'll be older and possibly not as healthy.  But, since January of 2007 when my gfr hit 5%, I've been living on borrowed time.

This is how I came to my decision to accept this kidney should it become available to me:

Peter has written some very educational posts with regard to extended criteria transplants.  Armed with this knowledge and other research along the way, I considered this transplant.  I am doing well on home hemodialysis.  So, I know that in the future, when this graft fails, I should do well on dialysis again, and hopefully by then there will be advances in the industry.  Should the transplant happen, I'll be switching therapies, and lifestyles.  I'll be trading needles for pills, and fluid retention for pednisone face.  It is a trade off, and I am willing to make that trade.

Back to the kidney - the way it works is that I'll hear from the coordinator if it is a go.  Or, I won't hear anything and that means that it wasn't to be.  Since I am writing this four hours since the initial call, I am reconciled that this kidney wasn't to be.  But it was a good exercise in judgment (and it forced me to make my "in case of transplant" e-mail list). 

This morning's phone call gave me the chance to make a real life decision, weighing pros and cons.  Until you are in the position of saying yes or no, it doesn't seem real.  This is my first "On Deck" call.  So, there is a kidney in my near future, if not today.

Cleveland Clinic doctors have developed a technique to improve kidney donation surgery

RenalWEB links to a story on Boston.com about an new procedure that's been developed to make living kidney donation easier for the donor, Cleveland Clinic taking kidneys through navel. Kathe passed along to this (5.5 minute) video link from MSNBC about the same new procedure:

I know when my brother donated his kidney to me in 1988 they had to do the 12 inch incision along his flank. Back then the common observation was that going in I felt worse than my brother, coming out he felt worse than me. With this new procedure perhaps both people can feel pretty good in a few days.

IVIG treatment for HLA sensitivity

KGO San Fransisco reports on using intravenous immunoglobulin (IVIG) to treat people who are waiting for a kidney transplant but are broadly sensitized to HLA antigens, Kidney treatment could save thousands.

The KGO report wrongly describes IVIG therapy as a surgical procedure, it is actually a blood product administered intravenously. The primary use of IVIG is as a treatment for infections, immune disorders/ autoimmune diseases. I imagine it was serendipity that found its application as a way to decrease HLA sensitivity. eMedicine reports:

Cedars Sinai Medical Center developed a protocol using high-dose (2 mg/kg) IVIG to desensitize transplantation patients who are broadly sensitized to HLA antigens.
...
results suggest that in many cases, high-dose IVIG treatment can neutralize or mitigate antibody responses to eliminate positive donor-specific crossmatches and permit transplantation of broadly sensitized patients, and they suggest a means to successfully treat antibody-mediated rejection.

It's fairly common on the CKD discussion boards and CKD listservs to read about people with HLA sensitivity but this is the first time I've heard of IVIG as a treatment.

Sometimes things work the way they're suppose to

Kidney Times has an article from IHD moderator Karol Franks (aka Okarol) relating her daughter's transplant experience The Miracle Continues. It is an amazing story about a truly altruistic donation.

Competing or Complimentary? Transplant or Daily Dialysis

by Peter Laird, MD

Dr. Jeremy Chapman and Dr. Benjamin Hippin have been kind enough to respond to emails sent to them on the recent payment for renal donation articles that were featured in the BMJ (pro and con). Bill and I as well as Dr. Hippin and Dr. Chapman in the end agree on several issues.

First, the standard three days a week dialysis session incenter is not meeting the needs of CKD-5 patients; second, renal transplant and daily dialysis proponents do not need to be in opposition to each other.  In fact, Dr. Chapman reported that he has 20% of his patients on home hemodialysis and 35% on home peritoneal dialysis in his practice in Australia where interestingly, he considers himself primarily a transplant advocate.  If America had across the board numbers such as Dr. Chapman's practice, Bill could fold up his blog and we would simply need only Home Dialysis Central for a resource of information and not need any advocacy for daily dialysis home programs at all, we would have arrived already.

However, one interesting aspect of my initial correspondence with Dr. Chapman is the dichotomy of competing resources leading to a fractured approach to improving access to either transplantation or home hemodialysis especially, when applied to the developing world. When responding to the relative values of dialysis and transplantation Dr. Chapman wrote:

I would agree with you that for a well dialysed patient the quality of life can be equivalent to transplantation. I have a number of patients who have been on dialysis more than 25 years. The difficulty that I have in advising this, as a global solution, is that the relative costs are vey different and for the emerging economies of the world we could not advise spending money on dialysis treatment to the neglect of renal transplantation. Dialysis performed well is a viable alternative that individuals in the developed world have available to them.

Yes, for the underdeveloped "third world nations," the tragic truth is that there are competing economies of scale. 

Looking at this competition for resources Dr. Hippen thus promotes payment for kidney donation because harvesting cadaveric kidneys is a labor intensive and expensive enterprise. Few nations outside of the developed world have the resources to initiate and maintain organ donation networks.  The dilemma of funding a dialysis program, cadaveric transplant networks and ultimately even payment systems for renal donations in third world nations is that these nations do not have the resources for any of these programs.  Nor do the majority of their patients have access to the expensive post transplant immunosuppressive medications. Rightly, the priorities in the third world focus on routine health care.  The poor in these nations will still be at risk no matter what ethical or economic package the debaters in England settle on.

Yet for the developed world, Dr. Hippen likewise promotes and is involved in home dialysis programs in his transplant nephrology practice and he actively promotes it as an alternative to patients not able to undergo renal transplant.  Indeed, he commented to me that if he was not eligible for a preemptive or quick transplant should he develop CKD-5, his next choice would likewise be daily home hemodialysis.  Yes, here in America and in the other developed nations, renal transplant and home dialysis should be complimentary and not competing programs implemented and managed side by side saving lives. 

Nevertheless, the debate in England, America and other affluent nations on payment for renal donation is led by the discussion on the "global" solution to renal disease which many believe is renal transplant by either altruistic donation (Dr. Chapman) or paid donation (Dr. Hippen).  Yet, here in America where we do have the resources for transplant and optimal dialysis, why does the discussion of underdeveloped nations apply?  Why is the same all or none approach to renal transplant OR optimal dialysis the leading argument in this debate even here in America, England, Australia and other affluent nations? 

The truth is that in America, we can maximize home hemodialysis, home peritoneal dialysis and renal transplant all at the same time to reach the largest numbers of people, saving lives and at the very same time, saving billions of dollars with all of these programs over the current suboptimal, three days a week hemodialysis treatments.

Yes, if America had the same practice profile as Dr. Chapman, Bill, Anna, Mel and I could spend more time with our families and less time on an infernal typing machine.  We thus need to deliberately so note that there are two discussions on the "global" solution.  One for developed economies where renal transplant and optimal dialysis programs are complimentary and not competing strategies, and in the economically challenged nations where the funding of these programs is sadly lacking for all modalities.

What can kidney dialysis teach us about kidney transplantation?

I enjoyed The God Committee by Dr. Satell. Dr. Satell was one of the authors along with Dr. Hippen of Code Red which I posted about last April. Both articles are a call for repeal of the ban on organ donor compensation. This article from Dr. Satell comes at the issue in an interesting way, first by giving a concise review of the recent news regarding liver transplants and Japanese mobsters down at UCLA and then reviewing the "Seattle Experience" - our use of an anonymous committee in the '60s to overtly ration access to ongoing hemodialysis.

I Enjoy Reading an Opposing View

Putting aside discrepancies in how I've heard the Seattle story told and the version presented in The God Committee, I object to equating kidney and liver transplants. There is not a viable longterm replacement for the liver - liver dialysis may someday be a reality but not yet - there is a viable longterm replacement for the kidney. And there is the matter that people have but one liver, altruistic living liver donation is not an option. These differences are enough it seems to me that increasing life saving postmortem liver, heart and lung transplantation through compensation, is not the same issue as increasing living donor kidney transplant - or bone marrow, which I rarely see mentioned - through compensation.

Peter's post on Monday addressed the idea that I have addressed too - we question the ethics of touting an urgent need to increase the supply of kidneys based on conventional dialysis outcomes. Peter has emailed some of the people taking a position on compensation to increase living kidney donation - the authors of various articles - we have to figure out how to share the interesting discussion he's initiated. I take the position that increasing kidney donation must be done understanding there are other ways to improve ones renal replacement therapy. The goal is not transplant per se, the goal is living the life you were meant to live; transplant is not typically life saving.  My understanding of the situation makes me uncomfortable with compensation, though I would put reimbursement for donor expenses in another category, with a different ethical calculus.

Seattle Lives

When I think of the Seattle Experience I think of the compromises that had to be made in the name of the greater good. By the time Congress established the dialysis program under Medicare in 1972 hemodialysis schedules had been optimized to accommodate the greatest number of people with the resources available.

Logistically providing four hour treatments, three days a week allows six people to share a machine. This was a compromise, a compromise to stretch resources was for the greater good, and it only impacted those who could not dialyze at home, about 60% of the Seattle dialysis population at the time. I understand why all those clinics mentioned in The God Committee had to live with tough rationing constructs back in the '60s. My question is why are we living with this same rationing today? The dialysis rationing implicit in a three day a week schedule lives on today. Indeed it thrives, with over 90% of all dialyzors surviving on incenter three day a week, short hemodialysis. What's our excuse for rationing? Money? If it is money than we should compare the global costs of all modalities.

I look forward to more posts on kidney procurement ethics from Peter and Anna. And comments, as always, are invited - whether you are on the sharp or dull end of the needle.

The truth about paying for kidneys

by Peter Laird, MD

On Friday both RenalWEB and NephrOnline ran the story from Britain where doctors are debating payment for organ donation.  One article gives a more balanced report on this issue and the other is actively promoting this practice.

It is sad to note the prognostication of the need for such a system based on the  false premise that without a transplant, people will die and they have no alternative to this which is not true. The overwhelming evidence is that short daily dialysis is as good as cadaveric transplant for long term survival and nocturnal, quotidian dialysis rivals living related donor transplants.

The time has come for a discussion on the real risks, benefits and alternatives of renal transplant. Unfortunately,  I have yet to see any article calling for promoting the ethically corrupt donor payment system coupled with the truth of daily dialysis.  Before we once again head down one more slippery slope, perhaps some truth in advertising should be applied to the entire renal donor debate, especially since there is a real alternative to renal transplant with similar survival and quality of life.

Medical Studies

By Anna Bennett

Anna here - as you can tell from the guests blogging, Bill is on a plane again (as I type this, he is on his way home).

I've noticed that there is a lot of discussion in the Dialysphere with reference to medical studies and publishing.  Well, here in the United States, our government funds a lot of medical research via the National Institutes of Health.  Let's check out what is happening in the world of Dialysis Research.

Currently there are 132 open studies (also called Clinical Trials) under the umbrella of "Renal Dialysis".  These studies encompass many aspects of dialysis all with one objective - to advance the field, and help us live longer and healthier lives.  Here is a list of the sponsors doing studies on "Renal Dialysis":

Government, (excluding U.S. Federal)
Industry
National Institutes of Health
U.S. Federal Agency, (excluding NIH)
University/Organization

Just as an example, here are the Businesses who are conducting studies under the NIH:
                        Abbott    2 studies
                        Abbott Japan Co.,Ltd    1 study
                        Abbott Nutrition    1 study
                        Advanced Circulatory Systems    1 study
                        Affymax    2 studies
                        Amgen    3 studies
                        Angiotech Pharmaceuticals    1 study
                        Astellas Pharma Inc    1 study
                        Baxter Healthcare Corporation    2 studies
                        Cubist Pharmaceuticals    1 study
                        Dialysis Clinics, Inc.    2 studies
                        Fresenius Kabi    1 study
                        Fresenius Medical Care North America    3 studies
                        Gambro Dialysatoren GmbH    2 studies
                        Gambro Renal Products, Inc.    5 studies
                        Genentech    2 studies
                        Genzyme    1 study
                        Hoffmann-La Roche    5 studies
                        Keryx Biopharmaceuticals    1 study
                        LEO Pharma    1 study
                        Merck    1 study
                        Novo Nordisk    1 study
                        Ortho Biotech, Inc.    1 study
                        Pfizer    1 study
                        Rockwell Medical Technologies, Inc.    1 study
                        Shire Pharmaceutical Development    2 studies
                        Tyco Healthcare Group    1 study

Check them out.  This is our future.

Deadly Skin Cancers after Transplant

This is Peter once again helping out Bill who is returning from a trip.

Last week, I met another patient at my in center dialysis unit who is preparing for a living related transplant from one of her sons.  She is a very vibrant lady who loves horses and the great outdoors in sunny California.  I struck up a conversation with her on home dialysis issues and most especially on the issue of severe and frequent skin cancers in solid organ post transplant patients.  She was completely unaware of the increased skin cancer risk and also of the fact that she will likely have to modify her involvement with horses and sun exposure post transplant despite already completing her pre transplant informed consent procedures.

There are three main types of skin cancer, Basal Cell Carcinoma (BCCA), Squamous Cell Carcinoma (SCCA) and of course the dreaded melanoma which is epidemic throughout America especially in those areas such as Southern California where sun worship is tantamount to a national sport.  In patients with normal immune function, malignant melanoma is the most severe type of skin cancer linked to high mortality if not found early.  BCCA is almost always a limited local cancer treated very effectively with various surgical procedures and SCCA is usually likewise an easily treated cancer by surgical methods alone, although even with normal immune status, SCCA can at times spread even in this population.

However, with solid organ transplant patients, SCCA is much more common and furthermore has a greater tendency to metastasize (spread) early and have poor outcomes.  What is surprising is not only the lack of awareness among transplant patients and transplant candidates but also among nephrologists and primary care physicians.  Renal transplant patients experience a 9% risk of developing cancer post transplant and SCCA is one of the most frequent causes of post transplant cancer deaths due to the high rate of spread.

All patients considering renal transplant should discuss these issues with their referring nephrologist, transplant specialist and primary care physicians and then should further consider a baseline dermatology evaluation as well as regular post transplant screening examinations by a board certified dermatologist. 

Further, aggressive sun avoidance and use of both clothing and sun screen is an essential part of preventing this deadly cancer.  Early changes leading to SCCA appear as hard, scaly, red or white patches on sun exposed areas.  In post transplant patients, early treatment is needed for even very small lesions to avoid the possibility of metastatic SCCA spread which does not respond well to various chemotherapy and radiation treatments.

Presumed Consent: a right to life or the gift of life

Howdy, my name is Peter and I have been a dialyzor since February 1, 2007.  Bill asked me to help out with some posts while he is traveling.

In keeping with Bill’s tradition of political issues, there is an important battle brewing in the UK and other countries regarding a transplant donation procedure called presumed consent. The operative ethical paradigm for transplant donation has been informed consent and an “opt in” procedure that was further agreed to at the time of death by the donors family who had the final authority to approve or disapprove of donation.  In England, Europe and Australia, there are proposals on changing to a presumed consent system of organ donation where those that do not wish to donate for personal or religious reasons would be required to “opt out” with a written refusal of organ donation while still competent.  Otherwise, all medical suitable “specimens” will be automatically considered as organ donors and families will have limited ability to appeal this decision.

Surprisingly, America has also moved with the Revised Uniform Anatomical Gift Act which also incorporates the same “Presumed consent” here in the US as well, yet quietly and without the fanfare of discussion as seen in Europe and Australia.

On a personal appeal, although there are benefits of renal transplant that are quite attractive, in my own opinion, I would not feel comfortable accepting a renal transplant graft from anyone that has not explicitly consented to serving as an organ donor and likewise having the blessing of their family.  Do those of us with ESRD have the “right” to a renal graft or is it still a supreme gift of love from one person to another?

Thus, are we moving from a “gift of life” to the “duty of life” here in America and around the world.  Are the rights of the individual even over our “own” organs and body tissues now fallen to the state’s utilitarian ethos of duty and obligation above autonomy and personal considerations?  In fact, by Talcott Parsons treatise on the “sick role,” will it next be considered by the state that all ESRD patients should likewise undergo renal transplant in the “best interest” and “duty” of a citizen of their respective countries since the “obligation” of those that are sick is to help to get better and to comply with treatment?  Will we thus have “presumed consent” for donation coupled later with enforced renal transplant? Would those that refuse renal transplantation be subjected to loss of funding?

This leads one to once more ask what is the political mindset that keeps daily dialysis off the shelf of optimal renal replacement therapies?  It is certainly not for lack of evidence of the benefits of quotidian dialysis that has been available for over thirty years.  In my opinion, there appears to be a subverted political expediency leading directly to renal transplant as the only viable long term treatment option offered.  My only question is why?