So You Need an Organ Transplant. Here’s What You Need To Know.


By Bob Aronson

(Founder of this blog site and 2007 heart transplant recipient)

This blog is longer than most because it offers one-stop access to information that should save you hours of Internet research.  We hope this single click will lead you to the answers you need and deserve. .  

When You First Learn That You Need an Organ Transplant

cartoonThere is no news that is much more disturbing than being told you are suffering irreversible organ failure and that the only solution is a transplant.  The news becomes even more difficult to bear when you learn that there is a critical shortage of transplantable organs.  Most of us meet that news with stunned silence at first.  The tsunami of thoughts related to organ failure renders our brains incapable of developing a rational response or even asking the right questions.  Usually it is only after leaving the Doctor’s office that the cobwebs begin to clear, and the fear of dying starts to generate questions.  They are a trickle at first and then become a torrent as broad as Niagara falls and as long as Angel Falls.

The questions start with the first news and seem to multiply as you learn about organ donation, about lifestyle while waiting for an organ, getting on the list, the surgery, paying for it, recovery and living with a transplant.  And – because everyone is different everyone has different questions.

As a heart recipient I’ve been through that gauntlet and struggled to find answers by spending endless hours on the internet, asking questions of physicians and others and reviewing my own experience.  Below you will find a few resources to get you started.  This is not a complete list, it doesn’t even come close but it does give you links to some resources that will at least head you in the right direction.

**This blog was developed for U.S. audiences. While there may be some applicability in other countries, each nation has different laws, requirements and approaches to donation/transplantation issues.   Make no decisions until you check with experts in your country. 

Transplantable Organs and Tissue

First it is important to understand which organs and tissues are transplantable.  Here’s the list.  Organs include the heart, kidneys, liver, lungs, pancreas, and small intestines.  Transplantable tissues include blood, blood vessels, bones, bone marrow, cartilage, connective tissues, eyes, heart valves, and skin.

Most organs are recovered from deceased donors, but in the case of kidneys and a part of the liver donation can be made by living donors to specific individuals.

The following resources should either provide you with the information you seek or at least lead you in the proper direction.

If you are a kidney, heart or liver transplant patient one of the very best Give thanks givee lifeinformation resources available is, “The Transplant Experience.”  It was developed by Astellas Pharma US, Inc.  which is a manufacturer of “Prograf,“ an anti-rejection drug.   You will find answers to most of your questions on this site, but there are other very useful links as well that we include in this posting.   http://tinyurl.com/q6heovg

Another excellent source is Web MD.  http://tinyurl.com/3vst3cf

And — still another from the Mayo Clinic this stirring “Nightline” video about the process.  http://tinyurl.com/nqzomf6

Organ Donation Key Myths and Facts

According to the American Transplant Association (ATA) (http://tinyurl.com/m42br82 )  There are over 123,000 people awaiting organ transplants in the United States, but only about 28,000 are performed each year.  That’s because the supply lags far behind the demand.  While over 90% of Americans believe in donating organs only about 40% ever get around to it.  The result is that about 7,000 men, women and children die each year waiting for an organ that never comes.

Why don’t people donate?  There are as many answers as there are people, but some believe that if you are in an accident and brought to an ER the medical people will let you die in order to get your organs.  That is simply not true.   ER teams are not even associated with transplant teams and most hospitals aren’t transplant centers anyway.  The ethics that bind medical professionals demand that they do everything possible to save your life and no thought, none, is given to taking your organs.  The ER people aren’t even the ones who make that decision.

The ATA says there are other myths as well.  For example:

Myth:

If you are rich or a celebrity, you can move up the waiting list more quickly.

Fact:

Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status is never taken into account in the allocation process.

Myth:

After donating an organ or tissue, a closed casket funeral is the only option.

Fact:

Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

Myth:

My religion doesn’t support organ and tissue donation.

Fact:

Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

 Myth:

My family will be charged for donating my organs.

Fact:

Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

Organ Donation Facts

  •  On average, 21 people die every day from the lack of available organs for transplant.
  • Another name is added to the national transplant waiting list every 12 minutes.
  • organ donoars save livesSeven percent of people on the waiting list—more than 6,500 each year—die before they are able to receive a transplant.
  •  One deceased donor can save up to eight lives through organ donation and can save and enhance more than 100 lives through the lifesaving and healing gift of tissue donation.
  •  Organ recipients are selected based primarily on medical need, location and compatibility.
  •  Over 617,000 transplants have occurred in the U.S. since 1988.
  •  Organs that can be donated after death are the heart, liver, kidneys, lungs, pancreas and small intestines. Tissues include corneas, skin, veins, heart valves, tendons, ligaments and bones.
  •  The cornea is the most commonly transplanted tissue. More than 40,000 corneal transplants take place each year in the United States.
  •  A healthy person can become a ‘living donor’ by donating a kidney, or a part of the liver, lung, intestine, blood or bone marrow.
  •  More than 6,000 living donations occur each year. One in four donors is not biologically related to the recipient.
  •  The buying and selling of human organs is not allowed for transplants in America, but it is allowed for research purposes.
  •  In most countries, it is illegal to buy and sell human organs for transplants, but international black markets for organs are growing in response to the increased demand around the world. Learn more about Transplant Tourism.

Qualifying for a transplant

Transplant eligibility depends on the organ you need.  Individual transplant qualifyingcenters may have different criteria but the links provided here will give you some idea.

Heart Transplant Qualification

University of Maryland http://tinyurl.com/klcjbns

 Kidney Transplant Qualification

Washington University, St. Louis, Mo.  http://tinyurl.com/nefho9x

 Liver Transplant Qualification

American Liver Foundation. http://tinyurl.com/cfnh7ro

Lung Transplant Qualification

Mayo Clinic.  http://tinyurl.com/lkmbwsx

 Pancreas Transplant Qualification

Johns Hopkins.  http://tinyurl.com/qdn9sbo

 Small Intestine transplant qualification

Cleveland Clinic.  http://tinyurl.com/m5ugaul

 Getting on the U.S. National Organ Transplant List.

the waiting listUniversity of California Davis Health System. . All organ transplants in the U.S. are coordinated by the United Network for Organ Sharing(UNOS) in Richmond, Virginia. It is a blind list with no names attached to patient records to ensure the fairness of organ and tissue allocation. . http://tinyurl.com/lhwywwv

 Living with a transplant

Transplant living.  http://tinyurl.com/k2tcpc2

Paying for the Transplants and Aftercare (Financial Assistance)

(This is a lengthy section that provides a great deal of information. If you are concerned about how to pay for your transplant and follow up care read it very carefully)

Because there is a shortage of organs the odds of getting a transplant are not good, There are a lot of factors that influence whether any one person will get an available organ and one of them is the ability to pay.  Unfortunately our system is heavily weighted toward those who either have insurance or an independent ability to finance the surgery and the aftercare. A transplant and the aftercare and medication for the first year after the surgery can cost as much as a million dollars.  Sometimes even those with the ability to pay need some assistance.

Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

UNOS is the private government contractor that facilities all organ transplants in the United States.  The information in his blog is copied from their website which provides a wealth of information about the entire donation/transplantation process.  It is one of the most comprehensive resources available.  Bob’s Newheart thanks them for compiling this information and for its willingness to share it with you via our blog.

About Anti-rejection Drugs

Almost everyone who receives an organ transplant has to take immunosuppressant drugs. The body recognizes a transplanted organ as a foreign mass. This triggers a response by the body’s immune system to attack it.  These drugs diminish that attack and allow the organ to continue to function, but there are other effects as well.  This lHealthline ink will take you to a comprehensive review of these life-saving drugs..   http://www.healthline.com/health/immunosuppressant-drugs#Overview1

Funding Sources

financial aidMost transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.

Common funding sources to help with the costs of transplants include:

Note: This information is only a brief summary and is not intended to provide complete information. Ask your transplant financial team and your insurance provider or employee benefits officer for the latest information or help.

Private Health Insurance

You or your family may have health insurance coverage through an employer or a personal policy. Although many insurance companies offer optional coverage for transplant costs, the terms and benefits of insurance vary widely. Read your policy carefully and contact your insurance company if you have questions about how much of your costs they will pay, including your lab tests, medications and follow-up care after you leave the hospital.

Some insurance questions to consider:

  • Is my transplant center in-network with my insurance company?
  • If my transplant center is out-of network, do I have an out-of-network benefit for transplant?
  • What deductibles will apply?
  • What are my co-payments for doctor visits, hospitalizations and medications?
  • Does my plan require prior authorization?
  • Who needs to get prior authorization?

Regardless of how much your insurance covers, you are responsible for any costs not paid by your insurance, unless you have made other arrangements. If you are responsible for paying any or all of your insurance premiums, be sure to pay them on time so that you do not lose your coverage.

Transplant center social workers and financial coordinators can also help you with the information you need. They can contact your insurance company to check on your benefits and explain your coverage in more detail.

Experimental and Investigative Procedures

If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your center or insurance company if your  policy will cover the payment. It is important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If you still have questions, contact your insurance company, your employer’s benefits office or your state insurance commissioner.

Tips

  • Keep copies of all medical bills, insurance forms and payments (or canceled checks).
  • Ask your insurance company about pre-certification or using a specific provider.
  • Follow the rules set forth by your insurance company so that your benefits will not be decreased.
  • Always keep a log (who you talked to, date and time and questions answered) of your conversations with anyone in the hospital’s billing office or your insurance company.
  • Make sure to keep your transplant center informed about your insurance, especially if you have more than one insurance company.
  • For more helpful tips, see the Financial Q&A.

COBRA Extended Employer Group Coverage

If you are insured by an employer group health plan and you must leave your job or reduce your work hours, you may qualify for extended coverage through COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985). This federal law requires certain group health plans to extend coverage for 18 to 36 months after benefits end. This requirement is limited to companies employing 20 or more people. You pay the full cost of the premiums for the group health plan. Learn more by contacting your employer’s benefits office or visit the federal Department of Labor Web site >

Health Insurance Marketplace

Also known as the health insurance “exchange,” the marketplace is a set of government-regulated and standardized health care plans in the United States. Learn more at www.healthcare.gov >

Medicare

MedicareMedicare is a federal health insurance program available to people who are 65 or older, disabled or have end stage renal disease (ESRD).

Medicare, like most private insurance plans, does not always pay 100% of your medical expenses. In most cases, it pays hospitals and health providers according to a fixed fee schedule, which may be less than the actual cost. You must pay deductibles and other expenses. Medicare currently offers coverage for transplant of:

  • kidneys
  • kidney-pancreas
  • pancreas, either after a kidney transplant or for certain indications

If you already have Medicare due to age or disability, Medicare also covers other transplants:

  • heart, in certain circumstances
  • lung
  • heart-lung
  • liver, including transplants necessitated by hepatocellular carcinoma (HCC)
  • intestines

To receive full Medicare benefits for a transplant, you must go to a Medicare-approved transplant program. These programs meet Medicare criteria for the number of transplants they perform and the quality of patient outcomes.

If you have questions about Medicare eligibility, benefits, or transplant programs, contact your local Social Security office, or Medicare at 800-633-4227 or www.medicare.gov.

Medicare Prescription Drug Plans

Medicare Part D covers costs for prescription drugs. To get this coverage you must choose and join a Medicare drug plan. For more information call (800) MEDICARE ([800] 633-4227)/ TTY: (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics >Part D).

MediGap Plans

Many people on Medicare also choose to buy a private “MediGap” policy to pay for costs not covered by Medicare. Check with a local insurance agent or go to www.medicare.gov (click on Resource Locator>MediGap).

State Health Insurance Assistance Program

The State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Your transplant social worker or financial coordinator can provide information on your states SHIP program, or learn more now >

Medicaid

MedicaidMedicaid is a federal and state government health insurance program for certain low-income individuals. Each state determines criteria for:

  • eligibility
  • benefits
  • reimbursement rates

Most Medicaid programs only cover transplants performed in their state, unless there are no centers that can transplant that organ. For more information, contact your local human services department or the financial coordinator at your transplant center.

Charitable Organizations

Charitable organizations offer a range of support, from providing information about diseases, organs and transplants, to encouraging research into these diseases and treatments.

Also, although it is very unlikely that one organization can cover all of the costs for an individual patient, some organizations provide limited financial assistance through grants and direct funding. For example, an organization may only be able to help with direct transplant costs, food and lodging or medication costs.

Advocacy Organizations

Advocacy organizations advise transplant patients on financial matters. If you agree to a financial arrangement with an advocacy organization, it is important to make sure that the funds are available in a manner that suits your needs. You may even want legal assistance in reviewing a written agreement before signing. Your bank can also help you review the arrangement.

Every advocacy organization should be able to provide supporting information and background documentation to prove they are legally recognized to help those in need. Brochures and other background information should never serve as substitutes for these documents. Ask advocacy organizations to provide you with copies of the following documents:

  • a current federal or state certification as a charitable, non-profit organization
  • a current by-laws, constitution and/or articles of incorporation
  • a financial statement for the preceding year, preferably one that
  • an audit report from an independent organization
  • references

Fundraising Campaigns

fundraiser

Even if you have coverage for transplant, fundraising is a good path to take to assist with costs not covered by insurance, such as prescriptions and temporary housing. It is also a great way for your family and friends to be involved with your care.

Asking for help is perfectly okay, and you may find that many of your loved ones will step forward to support your fundraising campaign. If you do decide to raise funds, it is best to do it before your transplant, as the money raised will help you budget for your medical expenses.

Before you begin seeking donations, it may be necessary to check with your city/county governments, legal advisor or transplant team about the many legal and financial laws and guidelines.

If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers, radio or television stations to help support your cause. In addition, try to enlist the support of local merchants and other sponsors to promote or contribute to your events. Your friends, neighbors, religious groups, local chapters of volunteer or service groups and other community groups may also be able to help.

It is also very important to understand that the funds you raise only be used for your transplant-related expenses and donated money sometimes has to be counted as taxable income. In cases in which money must be counted as income, you may lose your Medicaid eligibility.

These organizations can help you plan your fundraising campaign:

Children’s Organ Transplant Association (COTA)

Help HOPE Live  (Formerly the National Transplant Assistance Fund (NTAF)

National Foundation for Transplants

TRICARE (formerly Champus) and Veterans Administration

Government funding for families of active-duty, retired, or deceased military personnel may be available through TRICARE. TRICARE standard may share the cost of most organ transplants and combinations. TRICARE also covers living donor kidney, liver, and lung transplants. Patients must receive pre-authorization from the TRICARE medical director and meet TRICARE selection criteria. Pre-authorization is based on a narrative summary submitted by the attending transplant physician. For more information about TRICARE, contact the health benefits advisor at your nearest military health care facility, call the TRICARE Benefits Service Branch at (303) 676-3526 or learn more now >

 

The National Marrow Donor Program is also a resource for information on where to get financial assistance.  They offer this advice.

Transplant insurance coverage.  These items may not be covered by your insurance.  Check to be sure.

You or someone you know might need an organ/tissue transplant you must show an ability to pay before you will be accepted by most transplant centers.  Most people rely on insurance but insurance policies differ from one company to the next.  Be sure about what your policy covers, talk to your plans benefits manager or to the hospital social worker to get a clear idea of what is covered.

It is very likely that the following items are NOT COVERED by your health insurance company.  This information was generated by the National Marrow Donor Program.  http://tinyurl.com/b8pb4s4 

You may want to ask if the following items are covered by your specific health insurance plan:

  • Testing to find a matched unrelated or related donor
  • Donor costs
  • Transplants for a rare diagnosis
  • Travel and lodging expenses to and from the transplant center for patient and/or caregiver
  • Food costs while staying near transplant center
  • Parking costs
  • Prescriptions for post-transplant discharge or outpatient medications
  • Office visits coverage
  • Home health care
  • Psychiatric coverage
  • IV injections
  • Clinical trials
  • Sperm/egg storage
  • Insurance premiums when patient is not employed
  • Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
  • Change in cost of living after transplant (different food needs, for example)
  • Child-care costs

If your insurance does not cover all of your costs related to transplant, you may be eligible for Financial Assistance for Transplant Patients.

Financial assistance for transplant patients

Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations.

Planning for transplant costs

Applying for financial aid programs may include many steps. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations, and help you complete the applications.

Be The Match financial aid programs

financial aidBe The Match financial assistance is available for patients who are searching for a donor on the Be The Match Registry®, or who have had a bone marrow or cord blood transplant with a donor from the registry.  Financial assistance from these programs can help you pay for the cost of a donor search and for some post-transplant expenses. Talk with your transplant center financial coordinator to see if you are eligible for these programs.

*Funds for financial aid programs are available through the generous contributions to Be The Match.

Transplant costs worksheet can help you calculate the transplant costs not covered by insurance.

Search Assistance Funds

Search Assistance Funds can help pay the costs not covered by insurance for searching Be The Match Registry of unrelated adult donors and cord blood units. If you are eligible, Be The Match will notify the transplant center. This allows your donor search process to begin as quickly as possible.

To be eligible:

  • You are searching for an unrelated donor or cord blood unit from the Be The Match Registry.
  • Your transplant center has determined you do not have enough insurance coverage to cover the donor search costs.
  • You must be a U.S. resident.

Transplant Support Assistance Funds

Transplant Support Assistance Funds help pay for some costs during the first 12 months after transplant that are not covered by your insurance. These funds can be helpful with costs related to:

  • Temporary housing, if you and your family or caregiver needs to relocate for the transplant.
  • Food for you and your family or caregiver.
  • Parking and gas for ground transportation.
  • Co-pays for prescriptions and clinic visits.

To be eligible:

  • You have had a transplant using an unrelated donor or cord blood unit from the Be The Match Registry.
  • You must be within the first 12 months of your transplant.
  • You meet financial eligibility criteria.
  • You must be a U.S. resident.

ExploreBMT is a resource to connect you and your family with financial support and information from organizations you can trust.

Other financial aid programs

There are several more financial aid programs available to help you with your transplant costs. Ask your transplant center social worker to help you identify and apply for programs that you may be eligible for, including Be The Match financial aid programs.

The importance of Caregivers in Transplantation

four kinds of peopleOne cannot overestimate the importance of having a compassionate, organized and committed caregiver following a transplant.  For a while at least, the patient may be able to do very little for him or herself and will need varying degrees of care.  At first it will be important to make sure the patient gets to Clinic appointments, takes the appropriate medications at the right times, attends rehab sessions and follows dietary recommendations.  Many transplant centers won’t consider the surgery unless such a person is in place and committed to the patient.  This link should help those who agree to perform this most important function  http://tinyurl.com/lnq4vk9

While this may be a lengthy piece it only scratches the surface of resources available to transplant patients and their families.  If you have suggestions for additions, deletions or edits please contact bob@baronson.org the founder of this blog site.

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All the views

Thank you donors and donor families

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

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About Bob Aronson

Bob Aronson is a former journalist, a Minnesota Governor's Press Secretary and talk show host. For nearly a quarter of a century, he led the Aronson Partnership, a Minnesota-based communications consultancy that prepared corporate and government executives for crisis situations, regulatory testimony, media interviews and Presentations. Among his clients were all three U.S. Mayo Clinic locations, 3M, general Mills, CH2M Hill, the U.S. Department of Energy and scores more. In 2007 bob had a heart transplant after suffering from idiopathic dilated cardiomyopathy for 12 years. Shortly after he got his new heart he founded the now 4,300 member Facebook support group, Organ Transplant Initiative. At the same time, he established the Bob's Newheart blog where he has posted nearly 300 columns on organ donation, transplantation and other health related issues. The Viewpoint blog was started in late 2016 and bears the name of the Radio Talk show Bob did from 1966 until 1974, when he resigned to become Minnesota Governor Rudy Perpich first Press secretary. Bob and his artist wife Robin, live in Jacksonville, Florida with their two dogs, Reilly and Ziggy. Bob is also a woodworker and makes all of the furnishings for Robin's art festival booth. He also makes one of a kind jewelry or "memories" boxes that he donates to select transplant patients, caregivers, donor families and others who have somehow contributed to making life easier for the ill, the elderly and the less fortunate. Bob is in the final stages of editing two full-length novels that will be available on Kindle when ready for release sometime in early 2017. One is a sci fi novel about an amazing discovery near Roswell, New Mexico and you will be surprised to find it has nothing to do with the Roswell story everyone knows. It features a woman scientist who investigates impact craters for the U.S. Department of the Interior, Dr. Rita Sylvester and her female student intern. The other book is a political thriller that introduces a new hero to the genre, Fargo Dennison.

Posted on January 19, 2015, in Organ and tissue transplants and tagged , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Great Blog with lot of useful and informative stuff. Your blog gave me knowledge about what we should know about organ transplant. I will definitely share your blog with my colleagues too.

    Like

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