After you have been discharged, you will be attending “Post Transplant Clinic” a minimum of twice a week. You will have to travel back and forth to Sioux Falls on clinic days. Lab work will need to be drawn by 8:00 A.M. It is recommended that patients who are more than an hour away, stay in Sioux Falls for the first few weeks after transplant. Financially, you may need to prepare for gas, food, phone and lodging expenses for a minimum of two weeks after transplant.
Some things to consider as you make your plans
- There is no longer a free transplant house. Your insurance may pay for mileage, meals and lodging. Check with your insurance case manager or the transplant financial counselor to see if this applies to you.
- Many local hotels offer discounts to people in town for medical purposes. Talk with the transplant social worker for a list of those hotels.
- Financial help with lodging is only available after all other resources have been exhausted. Income will be considered. This help is available for the time immediately following your discharge from the hospital. It is available for you and one support person.
- The financial help for meals will follow the State Medicaid Guidelines for reimbursement. This amount will not be enough to cover all of your meals. Having food items along to eat in the hotel can help reduce some of your meal expenses. Most hotels offer a mini refrigerator and a microwave.
- Fundraising is a great way to help with these non-medical expenses. It is also a great way to let your family and friends help. Talk with the transplant social worker or financial counselor for more information on fundraising organizations that work specifically with transplant patients.
- If you have family or friends that live in or near Sioux Falls who have offered to let you stay with them, you are welcome to do so.
- If you are going to travel back and forth, make sure you have a dependable driver and car.
- One support person who will help you when you are at home is recommended to stay with you after transplant. If the same person can not be available for you for the entire time you are in Sioux Falls, you may need to split the time between a couple of people who will be able to help you when you get home.
What to Bring with You
- Comfortable Clothes
- Phone Cards
- Leisure activities such as books, magazines, needlework etc.
Medicare: What to Expect After Transplant
The majority of kidney transplant patients are eligible for Medicare coverage based on End Stage Renal Disease (ESRD). There are 4 ways you become eligible for ESRD Medicare:
- Peritoneal Dialysis- you are eligible the first month in which you start your training.
- Hemodialysis - you are eligible the first of the month, four months after starting dialysis.
- Transplant - you are eligible the first of the month in which you receive your transplant.
- Resumption of Chronic Dialysis - you are eligible the first of the month in which you re-start dialysis.
Note: there are some exceptions to these criteria, so check with your transplant social worker if you have questions.
If you were on dialysis prior to your transplant, you most likely were enrolled in Medicare when you started dialysis and will have coverage at the time of your transplant. If you did not have dialysis before your transplant or you were transplanted within 3 months of starting dialysis, the transplant social worker will enroll you in ESRD Medicare.
After your transplant, you will be covered under ESRD for a minimum of 36 months. You may be entitled to extended coverage if you fall into one or both of the following categories:
- You are 65 and older
- You have a permanent disability
Note: If enrolled in Medicare at the time you were first eligible for ESRD Medicare, you will have extended anti-rejection medication coverage for as long as your new kidney functions if you meet on one of these two criteria.
Medicare D is a prescription drug program available to people who have Medicare A &/or Medicare B. While this program is voluntary, there is a penalty for every month you delay enrollment. If you have prescription coverage as good as Medicare D (credible coverage) you do not need to enroll in Medicare D. You will not face a penalty should you need to enroll in Medicare D at a later time.
Transplant patients should keep in mind when selecting a specific Medicare D plan that the anti-rejection medications are not covered under Medicare D. They remain covered under Medicare B.
While this prescription program helps with medication costs, you will still have to do some financial planning because there are out of pocket expenses with these plans. Medicare D plans typically have an annual deductible. You pay 100% of the drugs’ cost. After you pay the deductible, you pay 25% of the drug costs up to the coverage limit. (In 2007, that limit was $2,400.00.) Once you reach the coverage limit, you fall into the coverage gap (donut hole). You pay 100% of the drug costs until you reach the catastrophic coverage amount. (In 2007, this amount was $3,850.00 in out of pocket drug expenses.) Once you hit this point, you will pay no more than 5% of the cost of your medications from this point on for the rest of the year.
There is assistance (low income subsidy) for people who meet the financial guidelines. Individuals who qualify for Medicaid are automatically enrolled in a Medicare D plan with subsidy help. To see if you qualify, contact your local Social Security Administration.
There is more information on Medicare D plans. Work with your transplant social worker, transplant financial counselor, dialysis social worker, local Social Security Administration or your local SHIINE program to answer questions you have.
Coordination of Benefits Period
Remember, if you are also covered under a group health insurance plan, you will have a 30-month coordination of benefits period. To avoid problems with billing, it is important to know where you are in this benefit period.
My coordination of benefit period began _____________ (the month you were eligible for Medicare). Your group health plan is "primary" or should be billed first for your medical expenses.
My coordination of benefit period ends __________ (30 months after you were eligible for Medicare). Medicare is now "primary" and should be billed first for your medical expenses.
My Medicare coverage ends __________ (depending on age and disability status)
If you have Medicare strictly for ESRD, your coverage runs out 36 months after your transplant. During this period, it is hoped that you are able to resume full time work. Make sure that your employer offers group health benefits, including prescription coverage. Make sure you enroll in the group health plan before your Medicare coverage ends. This will prevent you from facing any pre-existing condition penalties.
If you have not been able to get enrolled in a group health plan, you will need to consider purchasing a private plan. These can be very expensive and difficult to get. You may qualify for a state guarantee plan. To see if you qualify, contact your State Division of Insurance. Again, you need to be enrolled before your Medicare coverage ends to prevent any pre-existing condition penalties.
Finally, if you are unable to obtain any insurance coverage, it is critical that you contact your transplant social worker at least 2 months before your Medicare ends. The transplant social worker will help you find resources to continue your antirejection medications so you can keep your kidney working.
Living Donor Expenses
When living donors are used for kidney transplant, their medical expenses are covered under the kidney recipient’s insurance. Insurance can be a group health plan, a single policy or Medicare. Medicare will even cover transplant related complications for up to one year for the living donor.
Expenses the donor may incur that are not covered under the recipients insurance are:
- Travel Expenses
- Food Expenses
- Child Care
- Time Off Work
- Annual Urinalysis and Creatinine Monitoring
Donors should feel comfortable with these expenses. There are limited resources, such as fundraising organizations, available to help with these expenses. Please speak with your transplant social worker if you would like additional information.
Returning to Work: Vocational Rehabilitation
Many transplant patients qualified for Social Security Disability prior to transplant because of their need for dialysis. Often, after transplant, patients no longer qualify for disability because they no longer need to have dialysis.
In some cases individuals who have additional medical problems that are not corrected with transplant surgery will be able to continue with Social Security Disability. However, they may want to start working again to improve their quality of life.
Vocational Rehabilitation is the agency that specializes in helping individuals return to work. Voc-Rehab will meet with you to assess your disability, your employment history and your unique interests, strengths, and abilities. When the assessment is complete, you and your counselor will identify and agree on an employment goal. You and your counselor will develop a detailed plan of services to achieve that goal. There is no charge for Voc-Rehab services, but some services are based on your economic need and the availability of other sources of funding, such as health insurance, federal grants or benefits.
Voc-Rehab can provide counseling, access to work skill development, personal support services, job site accommodations, medical services, job placement and employer support as ways to help you return to full time employment.
Contact your nearest Vocational Rehabilitation Office to schedule an appointment. (You must be working with them prior to losing your disability status.) For the office closest to you, go to www.state.sd.us and click on Family/Health. On the drop down menu, select Dept. of Human Services. Click on Rehabilitation Services. On the drop down menu, select How to Get Services.
For more information, you can call the transplant social worker or view becoming a patient information on the Avera McKennan website.