The Transplant JourneyOptions for life

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Disclosure

KNOWLEDGE IS POWER!

You may find particular information surprising. This is here to inform so that you can make the best decision for your health

and life using accurate facts.

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Why?

• Why are you here today? • Why are transplants needed? • Why do kidney patients choose transplant? • Why do people donate their kidneys?

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Why are transplants needed?

• When native kidneys fail, a replacement option must be implemented – Hemodialysis– Peritoneal Dialysis – Transplant

• Transplant offers better quality of life – No requirement of maintenance dialysis after

transplant – Dietary and fluid restrictions change

• Transplant offers superior survival chances in most cases

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Some common myths

• “If I get a transplant and it fails, I will die.”– FACT – Patients with failed transplants return to or, in

the case of patients not currently on dialysis, initiate dialysis and can get re-transplanted

– If you are a dialysis patient, you likely only see failed transplants at your center because that’s where the patient returns if the transplant fails. Don’t let that be the “idea” you have of transplant.

• “If I get a transplant, I will have to take 100 pills a day.”– FACT – the most commonly prescribed transplant

medicine regimen involves 3 medications.

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Some common myths

• “Kidney transplants aren’t successful.”– FACT – 1 year kidney transplant success rates

are over 93% nationally– FACT – 3 year kidney success rates are 85%

nationally– The type of kidney transplant you get can

impact length of kidney survival

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Why do kidney patients choose transplant?

• To have a life without the requirement of dialysis

• To go back to work• To have a more normal life

– Eat favorite foods– Drink more freely

• To feel better and have more energy• To do more of the things they like to do• To watch family grow and develop• To live a longer life

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Why do people donate their kidneys?

• To help my loved one to feel better• To make a difference in the person’s life

– Donor’s get immense satisfaction knowing they have, at least, attempted to help even if the kidney doesn’t work

• To grow old together • To get the family unit back to a more

“normal” state– No more 5 am dialysis trips

• To help save the life of my ____________

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Why the focus on living donor transplant?

• It is THE BEST option for transplant recipients• Waiting time is a fraction of deceased donor• Superior graft and patient survival

– Shorter “ischemic” time on the kidney– No “brain death” as in deceased donation• Can be done while recipient is healthy before

long term effects of dialysis develop• And then there is the data -

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Survival

USRDS Annual Report, 2012

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Question

How many patients are on the national transplant waiting list? (All organs)

123,339

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The List

Based on OPTN data as of January 15, 2015

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Question

Approximately how many kidney transplants were performed in 2014 in the United States?

Total – 13,124Deceased – 7,865

Living – 5,259

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Donations by donor type

2004 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 1994-2003. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, Rockville, MD; United Network for Organ Sharing, Richmond, VA; University Renal Research and Education Association, Ann Arbor, MI.

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How long does it take?On The List

2004 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 1994-2003. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, Rockville, MD; United Network for Organ Sharing, Richmond, VA; University Renal Research and Education Association, Ann Arbor, MI.

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The faster the transplant, the better the data looks.

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Who can be a donor?

• All people (19 – 65 years old)

• By being a kidney donor, you would not only be helping out your loved one, but it would also allow another person to move up higher on the list. So, you will be helping two people, not just one.

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As a living donor, what are my options?

– Laparoscopic Nephrectomy• Multiple small incisions (3-4)• Single incision

– Open Nephrectomy• < 1% convert to “open” when intent is

Laparoscopic*

*2004 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 1994-2003. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, Rockville, MD; United Network for Organ Sharing, Richmond, VA; University Renal Research and Education Association, Ann Arbor, MI.

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What if my donor isn’t compatible with me?

• We can investigate “swapping” of your kidney for one that is compatible with myself– Internal swaps (loops) – External swaps (chains) – This can also be advantageous for the recipient

with difficult matching issues• 25% higher chance of transplant when involved in

swaps

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A Few Important Points For Living Donors

• Donor safety is the top priority!– Should the donor ever need a transplant, there

is a national policy that would give them priority on the list

– The risk of death to the donor is <1% (3 in 10,000)

– Approximately 5 % chance of risk to the donor for common issues related to any surgery

• Pain, infection, pneumonia, blood clotting, anesthesia risk, etc.

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As a recipient, what can I do next?

• Empower through knowledge– Keep learning– Seek out information about your condition, the

transplant journey– Attend educational courses when available

• Navigate The Wait• Find your “Ah-ha!” moment

– When you shift your way of thinking from “asking” to “informing” there is freedom in the process

– Share your situation and let people be moved to action on their own way

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Partner with your Champion!

• Let your loved ones help! • Don’t resist assistance • They are wanting to help because they

love you and are concerned for your futures

• Drink coffee– Derks Coffee Shop – Starbucks

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– QUESTIONS

Ustransplant.org (outcomes)Transplantliving.org (resource for all aspects of

Transplant or living donationUNOS.org (volumes, outcomes, resources)Houstonmethodist.org/transplantKidney.org (national kidney foundation) LKDN.org (living kidney donor network) Livingdonationcalifornia.org

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