"We connect vein to vein,
artery to artery. Any questions?" quipped my surgeon.
"[Transplanting] kidneys are easy!", waved their hand another, "I like liver for its challenge".
While organ transplants are truly a miracle, the transplant know-how is hardly a mystery. The transplant surgery and immunosuppressive protocols are the same around the world.
The only difference
between performing transplant in Nigeria and England is hot weather or that it is raining outside.
And the technology getting even better. The hospital stays are just 3 days. The kidney transplant surgery is 3 hours. Immunosuppressive drugs become less toxic,
new protocols make immunosuppressants regime easier.
Desensitization therapies benefit formerly untransplantable patients with high antibodies and can be administered out-patiently anytime.
Kidney transplant for some exceptionally lucky cats
My doctor and I were discussing laparoscopic nephrectomy versus getting kidney from the back when my living-donor-to-be looked at us with the complete bewilderment. "I don't care about the scar, I care about long term consequences of loosing my left kidney". What's another scar for a tough martial arts fighter, skier and race car driver?
The irony is stark: our transplantation techniques are state of the art; the trouble is, we are running out of the donors that make the transplant possible.
Most Americans could not become a living donor even if they wanted to
, Dr Anthony Bleyer study concluded.
As transplantation medicine progresses, transplant recipients make speedier recovery.
While you feel being subjected to a harachiri with a subsequent salt sprinkled on your wound for a couple of days after your transplant, you head suddenly becomes incredibly clear. You no longer feel being in a smoky bar. You no longer worry about your future. You no longer worry about the problem that has been bothering you for years. Not today. And hopefully not in a near future.
If you are out-of-town, your health insurance generously covers your stay. Most transplant centers have agreements with nearby hotels that allow for cheaper rate. Your hotel room and food are paid for.
Perhaps, you are on FMLA and getting compensated with a percentage of your salary.
This transplant recovery is almost getting lucrative!
If you travelled to get your transplant, you
will fall in love with your new home away from home. That's the city you are born again.
A small volume transplant program
treats you like a family! They know all their patients names and can even drive you around to your doctor visits. They spend days with you educating you about transplantation. They are supportive, friendly and very thorough. The problem is, their high PRA patients stay on top of the list for years. Not lucky, sighs the small volume transplant program.
The wait time at small transplant centers is volatile and subject to a rapid change. USRDS report of 2010 indicated that North Dakotans got their kidney in about a year. All 20 of them ! Apparently, there were 20 people registered in the all transplant centers in Dakota few years ago.
Years passed by and hundreds more Dakotans come down with kidney failure and walked into transplant center, the center went from the overachiever to a hindmost.
The queue - and the wait - tripled.
Studies have been associating center size
with the transplantion outcomes.
Small volume centers receive criticism and concern that their skills might degrade from lack of use and practice.
New UNOS guidelines suggest suspending a center due to "lack of need" if certain criteria of transplant volume is not met.
Nevertheless, a small transplant program in an unfrequented beach town might have shorter wait. It might be perfect for unsensitized patients or patients with blood type A or AB that are easy to match.
Is the system of doling out precious scarce resources fair? Perhaps, the current system of kidney allocation could be described as
Women who had children are at disadvantage. They might develop antibodies that make them reject high number of potential donor kidneys.
Your biological markers depend on your race. African Americans usually are on a higher dose of immunosuppresent drugs because of their genetic disposition to a very robust immune system.
Higher doses of immunosuppresent drugs cost more and health insurance coverage loss is particular devastating for patients
on a higher immunosuppresent drugs doses since they would need to raise more cash in a short amount of time.
A lot in the transplant journey depends on a consumer. How much research do you do? Do you require a lot of guidance from your doctor? Are you famous?
Texas transplant community legend states that San Antonio hospital was inundated with the calls to donate to Alonzo Mourning.
There were so many people calling that transplant coordinator announced that can no longer handle calls to donate to Mr Mourning.
Most recently, another famous basketballer was getting kidney offers on Twitter.
Are you an extrovert? Have big extended family? Lots of friends? Lots of Facebook friends? Good with computers? Photogenic? Those qualities matter when it comes down to a search for a living donor on a Facebook.
It's not hard to imagine that if you're attractive and young and appealing, it's easier to get people to donate to you than if you're short or ugly or have a hunchback, suggests transplant surgeon Dr Shapiro.
Your doctors prescription to "find a living donor" can not be easily filled out at your local pharmacy; transplant community encourages their patients to
be creative in their search for a living donor.
In addition to Facebook "kidney needed" page, would you write "kidney wanted" on the back of your car? Would you rent a billboard? Would you build a kidney shaped snowman?
Yet, despite of social media solicitations, there were only 181 unrelated anonymous kidney donations last year.
If you are under the age of 65, how's your employment skills?
Loose job - loose insurance - loose kidney is a vicious cycle that puts thousands of americans back on the transplant list due to job and, consequently, health insurance loss.
Perhaps, the first 3 years after transplant might be best spent on getting higher education, gaining certifications, even changing careers to
improve your future job (and corresponding health insurance) prospects.
Location, location and location! Geography plays a significant role in your transplant journey. Live in the middle - great! East and west coasts average 6-8 years of waiting time for a kidney transplant. An average year of dialysis carries 20% annual mortality and only 35% dialysis patients are alive after 5 years of dialysis.
Location also plays a role in obtaining a living donor: "You are out of town, perhaps you got somebody who could donate you a kidney?" - frequently enquired my transplant coordinators.
A famous football player with blood type AB living in Des Moines has an utter advantage over a highly sensitized mom from California.
None of this is intentional. Those are economical, social, psychological roadblocks that you don't encounter in other field of medicine. They play a huge role in determination who gets a kidney in time and who does not.
"Should I spin or chip my return of serve? "
I asked a tennis pro in my local tennis club. " It depends on a situation. Tennis is a situational game ", he replied thoughtfully.
Choosing your transplant center is a situational game as well.
It might be a good idea to move to a center with the shortest wait.
Living in Des Moines for a few months might be cheaper then renting a private jet from New York or California areas to fly to Iowa.
Charles from Salinas, CA did just that: "We moved to Des Moines two weeks ago and I received my Transplant Yesterday [May 2016] after being on their list for 2 weeks".
Fundraising for a private jet flight is another option. Ron from Seymore, Indiana described his quest for a new kidney and fundraising efforts in his blog
James from Corpus Christi, TX did not have to fund raise to cover the cost of the private jet: a charter flight company Air-Medical
has been reimbursed by James's insurance, Medicare and arranged private jet flight from Corpus Christi to Des Moines in a few hours after the call.
"They did not bill me. Medicare covered it fully".
"I'd drive the 3 1/2 hours [to Baltimore from New York] if I had a cold" - says Ellis, who got transplanted in John Hopkins after
trying most of the New York centers.
"I have been on dialysis for 10 years. Where should I go to get transplanted" asks Diane. Anywhere really. Perhaps with the exception of extremely overcrowded centers with over 10 year wait you will be on top of any transplant list at any hospital. The criteria will be what is more convenient for you. The UNOS rules accepted in 2014 backdate to dialysis start time.
Got slow progression of kidney disease? If you are close to 20 percent of kidney function left chances are your own kidneys might last you another 2 years. You might not even need to travel to register at a distant center, your local center might be suitable enough.
"I am in my 60s, in good overall health and exercise daily. My gfr is 5 percent I am not on dialysis, I feel fine, just a bit tired. " told me Sheryl from Utah. Sheryl received transplant recently after waiting just over 2 years on the waiting list.
And if you are lucky to have a potential living donor - an ultimate ace! - the choice of transplant center becomes independent of the wait on the cadavaric transplant wait times.
In this case, participation in a living kidney exchange program might be selection criteria.
A typical complain from a transplant coordinator: "Our patients are not reporting insurance change. They are not getting their cardiology clearances done. They need to be more independent. ".
A typical complain from the patients: "Why does it take 3 months to review a simple one page application?".
How do we settle this?
Often, there is a miscommunication among the patient, coordinator and physicians during the application/evaluation process.
Is coordinator waiting for the patient's doctor to sign the referral but the patient/doctor is unaware of it?
Is coordinator waiting for a stress test results to be faxed over while cardiology nurse sends fax to a wrong fax number?
Has the patient misunderstood the doctor's instructions?
Lack of transparency can be effectively remediated by introducing a workflow system that would allow patients to view ( and take charge of ) their own application process.
"Log into our Health Portal to watch your blood tests yourself. You know what your levels should be.
We've got 300 of you guys! Call us with any questions!" - advised me my post-transplant physician.
Being a transplant patient requires understanding and adhering to protocol,
responsibility to take your immunosuppressant and regular blood draws, which implies plugged-in and knowledgable patients.
So let's start early and get patients involved into transplant application and evaluation process.
Let us log into the portal and see the status of the evaluation, potential bottlenecks, such as missing referrals and dental clearances.
Some patients are so medically savvy - it seems that all they are missing is MD behind their name.
Others faint at the sight of a needle or a few blood drops. Many simply don't have time to go into details, they just want their healthy life back.
Nevertheless, the clear picture of where you are in evaluation process should be presented to everyone.
May be your most "non-compliant " patient will become the savviest one.