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Long-term Health
You have lived with your transplant for a year or more and you have many years to look forward to. To ensure that you stay healthy throughout your transplant experience, it is important that you stick to your medication routine—unless your doctor changes it—and become aware of some long-term health concerns related to transplantation. You also need to understand what lies ahead financially and how to avoid potential problems.
Bone Health
Your Skin
Protecting Your Organs
Staying on Top of Financial Concerns
Bone Health
Reduced bone health is a common problem in the years post-transplant. This may be due to reduced kidney function, where nutrients like calcium and vitamin D are made available to the body. It can also be due to long-term steroid use.
When your bone health is reduced, your bones become weak and brittle (also called osteoporosis). If left untreated, osteoporosis can lead to fractures (tiny breaks), commonly found in your spine, hips, and wrists.
Talk to your transplant team about your risk for post-transplant osteoporosis and treatments to help protect your bone strength. You may also want to discuss strategies for minimizing your dosage of steroids, if they are currently part of your medication regimen.
Your Skin
The medications used to help protect your organ also reduce your body’s immune response. As a result, risk for skin cancer is significantly increased following transplantation. In fact, as many as 40% of transplant recipients may develop skin cancer within 20 years of receiving their new organs.
What to Look For
Warning signs of skin cancer can be summed up in the ABCD's of melanoma: Asymmetry, Border irregularity, Color variability, and Diameter.
Asymmetry
 
Photography used by permission, courtesy American Academy of Dermatology
Lesion is not symmetrical. If you were to draw line through the middle, each half would not match.
Border
Photography used by permission, courtesy American Academy of Dermatology
The borders of the lesion are uneven and may have notched edges.
Color
Photography used by permission, courtesy American Academy of Dermatology
Most moles are brownish in color. As melanoma progresses, white, blue, and/or red may appear.
Diameter
Photography used by permission, courtesy American Academy of Dermatology
Most cancerous lesions tend to be larger than the size of a pencil eraser. However, some can be smaller.
Remember, the information provided here is for educational purposes only. Only a doctor or dermatologist can properly diagnose skin cancer lesions. You may want to consider having a dermatologist evaluate any moles that you have and schedule annual re-checks to make sure everything is ok. Any worrisome skin lesions should be evaluated by your doctor or a dermatologist immediately.
Squamous Cell Carcinoma
Photography used by permission, courtesy American Academy of Dermatology
This is the most common type of skin cancer in transplant recipients. This type of skin cancer appears as a crusted or scaly area of the skin that is red at the base. It may also appear as an open sore that won’t heal. Squamous cell carcinomas can occur anywhere on the body however, they generally appear in sun-exposed areas like the face, neck, arms, scalp, hands, and ears.
Basal Cell Carcinoma
Photography used by permission, courtesy American Academy of Dermatology
This is the most common skin cancer worldwide, and the second most common type of skin cancer in transplant recipients. Basal cell carcinoma most often appears as a dome-shaped, shiny or red bump. It can also appear as a pimple-like growth. Commonly, it is described as a sore that bleeds, then heals, only to reappear again. Basal cell carcinomas generally appear on sun-exposed areas such as the face, scalp, ears, chest, back, and legs.
Protecting Your Organs
Your transplant
First and foremost, you must protect your transplanted organ—you know how important this is. And this means keeping up with your medications, even if you are feeling great. No matter how many years it has been since you received your transplant, rejection is always a concern.
Be sure to keep in constant contact with your transplant team, and always discuss your options. There may be an opportunity for you to reduce the number of medications you require or how often you have to take certain medications as your body becomes more used to your organ. Only your doctor can determine what is right for you. Remember, never stop taking your medications or adjust your medication schedule on your own.
Your Heart
Some of the immunosuppressive medications you are taking may increase your cholesterol levels and/or your blood pressure. If cholesterol levels get too high, blood vessels may become partially clogged, slowing or blocking the flow of blood. This increases the risk of heart disease and stroke.
Some transplant recipients also develop high blood pressure (also called hypertension) because of their immunosuppressive medications. People with post-transplant hypertension usually find that their blood pressure can be effectively managed with proper diet and exercise and with blood-pressure-lowering medications.
Talk to your doctor about your immunosuppressive medications and the risk of increasing cholesterol and blood-pressure levels. Your doctor or nutritionist can also recommend a diet plan to help keep your heart healthy.
Staying on Top of Financial Concerns
Though dealing with finances can be stressful, there are a lot of things you can do to handle financial matters. One of the best ways to reduce your stress is to know what to expect. And when it comes to the years post-transplant, one of the most common financial concerns is the cost of medications.
As you know, the best way to keep yourself and your transplant healthy is to take every dose of your medication, every day. There are people and organizations available to help make sure you have the financial means to do just that. Here is some basic information about what to expect financially and advice for handling your medication costs. Please talk to your insurance company or transplant financial coordinator for additional information.
Medical Coverage: Insurance
If you have a personal or employer-provided insurance plan, talk to your insurance company about any “caps” in your policy. A “cap” is the total amount of money that your policy will pay out in your lifetime. Sometimes there is also a cap specific to a particular procedure (such as a transplant) or how much the policy will pay for prescription drugs per year. If your medications and/or medical care exceed the allowed amount, you are responsible for the remainder.
Medical Coverage: Medicare
Medicare provides lifetime coverage of anti-rejection drugs to those people who are receiving Social Security Disability Insurance or those over the age of 65. For people whose Medicare is based only on end-stage renal disease (ESRD), Medicare coverage usually lasts for 36 months.
Medicare Part D is a new prescription drug coverage plan offered by Medicare. It will be possible to enroll in Part D from November 15, 2005, to May 15, 2006. Those who join after May 15 will have to pay a penalty, which increases over time. You can read more about this new plan in the November 2005 Transplant Experience Newsletter.
It is also important for transplant recipients considering enrollment in Part D to verify that your medications are a part of medicare’s “formulary.” To check medicare’s formulary list, please click here. For additional information, visit www.medicare.gov or call 1-800-MEDICARE (1-800-633-4227) to speak with a representative about your specific needs.
This is a general summary of Medicare coverage, and is not a substitute for individual advice. This information may change, and you should always verify what information is applicable to you and your particular situation.
Medical Coverage: Medicaid
Medicaid is a state health insurance program that helps individuals and families with low incomes pay for some or all of their medical bills. Coverage and reimbursement will vary from state to state, as well as year to year, depending on state legislative budget changes.
Patients with Medicaid will likely have coverage for all of their immunosuppressive drugs; however, some states have prescription limits in place to control costs.
Patients who have Medicare and Medicaid are considered to be dually-eligible for medication coverage. There are six different levels of Medicaid for dually-eligible participants. Each level is based on financial need. Your level of coverage will depend on which level of Medicaid you are eligible for. Your Medicaid case worker can help you find out which Medicaid plan you have and help you understand the specifics of your coverage.
As of January 2006, dually eligible patients are automatically enrolled in the Medicare Part D benefit. Immunosuppressive drugs will be covered under Medicare Part D only if the drugs are on the Part D plan formulary. You can read more about Part D in the November 2005 Transplant Experience Newsletter.
This is a general summary of Medicaid coverage, and is not a substitute for individual advice. This information may change, and you should always verify what information is applicable to you and your particular situation.
Medical Coverage: Medigap Insurance
This is supplemental insurance that covers gaps in the basic Medicare plan. To learn more, call the Centers for Medicare and Medicaid 1-800-MEDICARE (1-800-633-4227) and request a copy of A Guide to Health Insurance for People With Medicare.
Financial Assistance: Patient Assistance Programs
Some pharmaceutical companies offer programs to help cover the cost of their medications. Though eligibility and instructions for enrollment in patient assistance programs can vary from company to company, generally a patient must be a U.S. citizen or legal resident and must demonstrate financial need or lack insurance coverage. To enroll you, your doctor will need to complete and submit a program application. Once you are in the system, you should begin receiving regular shipments of your medication. The cost to you may be a small charge (like $20) per shipment, but this too varies from company to company. Speak with your doctor or transplant financial coordinator for additional information. To review the directory of pharmaceutical company programs, including eligibility requirements, visit www.pparx.org.
Financial Assistance:Transplant Center Programs
Some transplant centers provide financial assistance to people in need. Talk to your transplant financial coordinator to determine what is available to you through your transplant center.
Financial Assistance: State Programs
Some states have drug assistance programs designed to help people with chronic conditions. Eligibility is generally based on income, residency, and Medicare status, among other requirements. Your transplant financial coordinator or social worker should have information available regarding such programs in your state.
Financial Assistance: Support Organizations
Some charitable organizations and advocacy groups offer financial assistance to transplant recipients. Such assistance may include helping to cover the cost of medications or providing help with food and lodging. Talk to your transplant team about specific organizations in your area and visit the support resources on this site.
Financial Assistance: Fundraising
You and your family and friends may want to consider fundraising to seek contributions from your community. Before doing so, be sure to check with your local city government to understand the legal requirements and any specific rules regarding public fundraising.
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