The Cost of Survival: The Economics of Transplants and Other Financial Follies

Let's have a little money moment. Having a chronic or terminal illness is not cheap, and if you are not vigilant, the math stops mathing and your finances start crashing. A serious illness doesn’t just attack your body — it can quietly dismantle your finances. Medical bills, reduced income, and insurance gaps can spiral into financial disaster faster than most people imagine. I’ve seen families lose everything, not because they weren’t strong enough, but because they weren’t prepared for the financial storm that comes with illness. It is entirely up to you to navigate the financial hurricane that will suck the life out of your bank account and destroy your credit if you are not prepared.

Loss of Income - When Illness Hits Your Paycheck (

There are many factors that can lead to financial downfall. There may be a loss of income for the patient in need of care and/or their care givers. I have met many people in both scenarios who lost their jobs during this period.

I myself was laid off while I was on sick leave. It was not considered a breach in FMLA because it was a massive reduction in force (RIF) and therefore I was not singled out. In my case, it was a blessing because my only income at that time was Long Term Disability which was only a portion of my salary and my Social Security Disability had not kicked in yet. I had been with the company for 12 years at that time, so my severance package was a life saver.

I recall speaking with a man at a Rehab Facility who worked for a family owned business and considered them his second family. However, when he needed to be present to care for his son, they terminated his employment for taking too much time off of work. He received no severance, no warning, just his walking papers. So much for "family".

While you can't change your circumstances, you can control how you deal with them. If you are waiting for someone to take you by the hand and guide you through the process, that is not going to happen. I have said it before, and it bears repeating, you are your own best advocate.

If you are on the transplant journey, I recommend that you begin researching your potential resources sooner rather than later and begin financial planning with your family so that everyone is on the same page when you become debilitated.

Protecting Your Income with Disability Insurance

For both employees and employers, understanding how short-term and long-term disability works is essential for financial protection. Whether you're covered through your employer or purchasing an individual disability insurance policy, having a safety net in place can make all the difference when health challenges arise and throughout the transplant process. It is important that you review your policy(s) and fully understand your coverage. It is also critical that you ask your doctor to provide the required medical documentation as soon as coverage requirements are met and that you confirm delivery. I personally had them give it to me so that I could review and I then delivered the required paperwork to my insurance company.

Short Term Disability

Short term disability (STD) is a type of insurance benefit that provides partial income replacement when you're temporarily unable to work due to a non-work-related illness, injury, or medical condition.

Typically, STD coverage includes:

• A short waiting period (usually 7 days)

• Income replacement of 60–70% of your regular pay

• Coverage for up to 13–26 weeks

• Required medical documentation from a healthcare provider

Coverage details vary by policy, so it’s important to review specific plan terms.

Long Term Disability

Long term disability insurance provides income replacement if an illness or injury prevents you from working for an extended period, typically beyond 3–6 months (once Short Term Disability expires).

Long-term disability (LTD) insurance typically includes:

• Income replacement: Usually 50–60% of your regular earnings.

• Coverage for extended periods: Benefits may last for several years or until retirement age, depending on the policy.

• Protection for various conditions: Covers both physical illnesses or injuries and certain mental health conditions.

• Rehabilitation or return-to-work support: Some policies offer services to help you transition back to work.

• Partial disability benefits: May provide payments if you can work part-time but not full-time.

Coverage details vary by policy, so it’s important to review specific plan terms.

Social Security Disability - Navigating the SSD/SSI Process

(Click link above to reach site web site)

Applying and being approved for Social Security is a lengthy process, so it is imperative that you begin the process as soon as you qualify for services. Many people will tell you that you have to hire a lawyer in order to be approved. That is simply not true. I submitted my own application, gathered all of the required documentation from my doctors and hand delivered my package to my local Social Security Office. My application was approved on the first submission. I did the same when I submitted a request for SSI on behalf of my quadriplegic nephew and again, was approved on the first submission. I was able to review all of the documentation being submitted by my medical providers to ensure that it fully met the criteria and contained the required evidence (test results, etc.). If you do hire a lawyer to do this on your behalf, they will take a chunk of change for doing so.

How to Improve Your Chances of Approval on the First SSD/SSI Application

1. Provide Complete Medical Evidence

   • Include detailed doctor notes, lab tests, imaging results, and treatment history.

   • Show the severity and consistency of your condition over time.

2. Clearly Show Functional Limitations

   • Explain how your condition prevents you from performing work-related tasks.

   • Include everyday impacts (lifting, standing, concentration) in addition to medical diagnosis.

3. Use Precise Documentation

   • Fill out all forms carefully and completely.

   • Avoid missing dates, incomplete descriptions, or inconsistencies.

4. Include Statements from Treating Providers

   • Letters from doctors, therapists, or specialists describing limitations carry significant weight.

5. Demonstrate Long-Term Disability

   1. Include evidence of ongoing treatment and prognosis.

Key Takeaway: A thorough, well-documented application that emphasizes functional limitations—not just the diagnosis—has the best chance of approval on the first try. Always keep copies of everything!

Understanding Insurance Coverage

It is important that you fully understand your insurance coverage and that you or a reliable family member confirm that funds that are being paid out of pocket are actually owed. I cannot tell you the number of times that a medical provider submitted a claim with the wrong coding and as a result, the claim was denied. Rather than the medical provider fixing it, they billed me directly for the fee or they turned it over to a collection agency. It is a major pain point, but believe me when I tell you that you will be glad that you did it. I often wonder how elderly or mentally challenged people survive the medical insurance game of cat and mouse.

You should also familiarize yourself with what your insurance company will cover related to the transplant itself, your living donor, or the caregiver that accompanies you during your hospital stay. Many insurance companies will cover mileage, airfare, food, lodging, etc. In the case of a living donor, they will cover all of the donor's medical and living expenses throughout the transplant process. Don't rely on someone to tell you - do your homework!

I will also share that if there is a medication or medical equipment that is needed, do not just roll over because the doctor/therapist/nurse practitioner tells you that insurance will not cover it. Here again, I pushed back every single time someone told me that and was able to successfully procure what was needed. I told more than one provider that it was not up to them to determine how it would be paid for, that was up to me. If it is needed, submit the prescription and if it gets denied by my insurance company, it is up to me to determine how it will be paid for. In several cases, the insurance company simply needed a letter of necessity from the medical provider in order to obtain a waiver. In other instances, the insurance company might not cover it, but the manufacturer may have a program that will offer a significant discount, or there may be other options for financial assistance. Never take "your insurance won't cover it" as gospel. If you need it, be willing to fight for it.

Other Sources of Financial Aid - Where to Find Financial Help

In Transplant and other healthcare related communities, there are other financial resources if you look for them. Do your own research in order to see what might be available to you. Your Transplant Coordinator should also be able to provide you with a list of resources, and in some instances the hospital will offer financial assistance. Below are a few suggested sites to review. (Click on links to reach web sites)

• American Transplant Foundation (ATF)

• The Living Donor Assistance Program

• Donate Life Missouri Financial Assistance (check your state equivalent)

• Help Hope Live

• Children's Organ Transplant Association

• National Foundation For Transplants

• Transplant Unwrapped

• Patient Access Network

• Medical Bill Forgiveness

Avoiding Debt While You Heal

The last thing a person wants to deal with as they recover from a transplant is trying eliminate a mountain of debt. I strongly recommend that you avoid this as much as humanly possible.

• Evaluate monthly expenses to see where you can cut back

• Avoid Credit Card Debt!!!!!!!

  • If necessary, take out a small loan versus accumulating credit card debt.

  • If you have credit card debt, look for options to transfer the existing balance on that card to an interest free option.

• Review the terms on any home or automobile loans. You may have insurance that will cover payments while you are disabled.

• If you have existing debt, see if they will work with you to alleviate financial pressure during your recovery period. If you contact them up front they will work with you.

  • Mortgage forbearance

  • Deferred payments

  • Refinance for a lower rate and lower payments

Fund Raisers - Tapping Into Community Support

The depth of human kindness is boundless. During one event, an elderly lady walked up to my dear friend and gave him her last two dollars. She told him that it was her last two dollars until her social security check came, but she knew we needed it more than she did. I actually still have that woman's two dollars and the note that my friend wrote when he gave it to me. It is a living reminder that people at their core are good. That woman gave me more than $2 — she gave me hope.

You will find that people are eager to help if you let them. I have had to swallow my pride more than once to raise funds during a crisis. We held chili dinners, raffles, bowling tournaments, concerts, t-shirt sales, cookbook sales and more. We provided a mail in option for people that could not attend an event in person. Friends and neighbors solicited local businesses for food donations for the chili dinner(s) and for raffle items. We had volunteers hold signs in front of the venue to bring people in to our events. In the middle of medical chaos and financial uncertainty, it’s easy to feel alone. But people will show up if you give them the chance. Plan wisely, fight for what you need, lean on your community, and remember: kindness can carry you further than you think.