The Transplant Games Are Coming to Madison

How to Get on a Transplant List: What is the Process?

Transplant Medications: Important Information You Should Know

The Transplant Evaluation, So Much to Learn: A Patient's Perspective

Transplant Self-Care Issues to Consider While You Are Waiting

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2010 Patient Satisfaction Survey: Results and Discussion

The Transplant Games Are Coming to Madison
R. Michael Hoffman, MD

Madison, Wisconsin will host the U.S. Transplant Games this summer (July 30th – August 4th).  Thousands of people who have received the gift of life through solid organ transplantation will travel to participate in the Games. The U.S Transplant Games was created by the National Kidney Foundation in 1980 to demonstrate the amazing success of organ transplantation and to challenge organ transplant recipients to improve their physical conditioning after a transplant. The Games are modeled after the Olympics and encompasses 14 different sports with multiple events in each sport. Similar to the Olympics, gold, silver and bronze medals are awarded to the top 3 athletes in each event.  The Games are held once every two years in a different city across the United States; however, 2010 marks the first time the Games have ever been held in Wisconsin.

People across the entire United States who are living with a life saving organ transplant (such as a heart, lung, liver, pancreas, bone marrow, intestine and kidney) are invited to attend. Teams are created depending on the recipient’s current residence and are typically broken down by state. Therefore, recipients who live in the state of Wisconsin will be eligible to join TEAM WISCONSIN.

Transplant Recipients, living donors, family members and friends are all invited to attend the games and join a team but competition in the sports is limited to recipients of solid organ transplants however anyone can join TEAM WISCONSIN as a supporter of transplant.

This year marks the first year that living donors are eligible to compete in a few select events with recipients of solid organ transplants. In addition, the Games also feature special events including the opening and closing ceremonies; ceremonies honoring both living and deceased donors, a 5K fun run and walk which is open to everyone and other educational workshops. More information can be found at: www.kidney.org/news/tgames2010/.

It is truly an awe inspiring event worth the effort to attend part or all of the events. In excess of 7,000 people are expected to attend and currently there are over 300 members of TEAM WISCONSIN already enrolled. So save the dates July 30th – August 4th and plan to come and celebrate miracle of transplantation. Further information regarding joining TEAM WISCONSIN can be obtained by calling the National Kidney Foundation at 1-800-622-9010.

How to Get on a Transplant List: What is the Process?
Rebecca Hayes, LCSW

Working toward a transplant is a long and overwhelming process. Many of you may be wondering what getting on a transplant list really entails. Read below for some great information.

1. Get information from the experts already in your life
Ask your nephrologist and your dialysis team members (if you are on dialysis) for basic information about transplant. They may have some initial impressions about whether transplant would be safe for you, and what the process is like at transplant centers near you. They may also start a referral for a transplant evaluation. Your dialysis social worker or nurse can share reading materials or websites, or help you meet people who have been transplanted.

2. Explore transplant centers on your own
You can also contact a transplant center directly to start a referral. You can search for transplant centers in your area by going to the United Network of Organ Sharing (UNOS) website, http://www.unos.org/members/search.asp. UNOS also tracks data on specific transplant centers. You can learn lots about transplant centers, including how many transplants they do, their outcomes, as well as average waiting list times, by puttering on their site, www.transplantliving.org.

3. The transplant evaluation process
Once you connect with a transplant center, you will be scheduled for a transplant evaluation. The order of what happens next varies by center, but the goals are in general the same. You will learn more about what is involved with transplant. The transplant team also needs to learn about your medical history and current health in order to decide if you are a "transplant candidate." In other words, the transplant team needs to sort out whether transplant will improve your health and be safe for you in the long run.

So what does that look like in practice? At some centers, including my own, you speak by phone with a transplant nurse coordinator first. You then complete a bunch of seemingly random medical tests before your evaluation (more on this in a minute). At other centers, you go to the evaluation first, and then get a long list of tests to complete. Either way, these will be required before getting to the waiting list.

The transplant evaluation day is overwhelming. You may attend a class to learn more about transplant. You meet with a whole team, get lab tests done, and may have additional meetings too. Transplant team members include:

• The nurse-coordinator is your ‘point person.’ She/ he will organize the multitude of tests and will also help you learn about caring for the transplant.
• The surgeon will describe the surgery itself and will look in-depth into your health history to assess risks for you.
• The dietician will assess how nutrition, and weight, currently affect your health.
• The social worker helps identify how transplant might affect your quality of life. He/ she helps you set goals so you are ready to care for the transplant, and get needed supports.
• The financial coordinator helps sort out your insurance coverage. 

Some centers do this all in one day; others take a couple days. I hope you walk away with more understanding that the goal of transplant is to improve your health and your quality of life, but that it is a treatment, not a cure, with its own set of hassles and risks. If you can, bring loved ones with you to serve as extra sets of ‘ears’ to your evaluation, this helps later when details are a blur.

So what are all those seemingly random tests about? Here’s the lay-person’s version:

First, the surgeon must determine if the surgery itself is safe for you. This is why getting the ‘okay’ for your heart, your lungs, your circulation, and even your weight may be needed.

In addition, after the transplant, you will take medicine to keep your body from fighting off (or ‘rejecting’) the new kidney. If you have underlying illnesses, including infection or cancer, these can be harder to treat after transplant, so it’s important to learn ahead of time about your overall health. This is why tests like colonoscopy, PAP smear, prostate exam, and dental exams may be required.

You will not leave the day of your transplant evaluation and be on the waiting list. You will know what needs to happen next.

4. Learn more about living kidney donation
You will leave your transplant evaluation with information about the long kidney transplant waiting list. A living kidney donor is almost certainly the best way for you to get a good transplant quickly. Your transplant center can help you learn more about what would be involved for a potential living donor, or might be able to help you practice asking. You can learn more about living donation at livingdonorsonline.org.  

5. Transplant candidacy
Once you have completed all the required tests, your medical file will be presented at a multidisciplinary kidney candidate selection meeting. A group of surgeons, coordinators, nutritionists, and social workers make sure nothing has been missed in your file. After your case has been presented, you, and your referring nephrologist, will be notified in writing about the outcome. You and your doctor will get a letter that states clearly you are on the list, that you were determined not to be a candidate, or more tests are needed.

6. Connecting with more than one transplant center
A side-note: you can always get a second opinion. Transplant centers each have their own candidate selection criteria. They must provide this criteria if you ask for it; your dialysis center may have local centers’ policies on file. There are some medical conditions which may be more-or-less automatic contraindications to transplant (active malignancy might be in this category) but other conditions may be more variable between transplant centers (weight, age, or HIV status may be in this category). If you don’t feel comfortable with the determination by one transplant center, talk with your nephrologist about connecting with a different one.

You may choose to get on the transplant waiting list in more than one ‘region’, since most kidneys are distributed more-or-less locally. Different regions may not be as far away as you fear. For example, from where I work, a different region is only 1½ hours away. Of course, if you pursue getting listed in more than one region, you should make sure this is okay with your insurance and that you are prepared for the additional inconvenience of getting care farther from home.

Transplant Medications: Important Information You Should Know
Kim Holdener, Pharm. D.

Receiving a kidney transplant changes your life in many ways. You will have changes in your diet, your lifestyle, and of course, your medications. Some of the medications you need while on dialysis will no longer be necessary, such as phosphorus binders. However, there are many new medications necessary to keep you healthy and to keep the transplanted kidney working well. Different transplant centers have different medication protocols. This article will focus on the typical medications prescribed after transplant at University of Wisconsin Hospital and Clinics.

The most important medications to take after a transplant are medications to prevent organ rejection. These medications are called anti-rejection or immunosuppressants medications. Anti-rejection medications work by weakening the immune system. Normally, the immune system fights off infection in the body. Without anti-rejection medications the immune system would think that the transplanted kidney is an infection and would attack it. This leads to organ rejection and ultimately failure of the transplanted kidney.

After a kidney transplant, most people need to take three anti-rejection medications – a steroid (prednisone), mycophenolate, and a calcineurin inhibitor (tacrolimus or cyclosporine). Each medication works in a different way to inhibit the immune system and protect the transplanted kidney. Some of these medications have special administration instructions, and they can all have side effects associated with them. The transplant healthcare team will make sure that you receive plenty of education about the new medications, including how to take them and how to manage side effects before being discharged from the hospital.

In addition to anti-rejection medications, there are several other medications you will need to help you stay healthy. Due to the anti-rejection medications, your body will not be able to fight off infections as well. Anti-infective medications are prescribed for this reason and include an antibiotic, antiviral, and antifungal. These medications are only taken for 3 to 12 months after the transplant when your body is at the highest risk of infection.

There are a few other medications that patients are instructed to take after a transplant for overall health. These include an aspirin, calcium supplement, multivitamin, and a medication to prevent ulcers. In addition, it is not uncommon to need medications for blood pressure, cholesterol and diabetes, especially if you were taking those prior to transplant.

Getting a transplant can be both exciting and confusing since there are many changes that occur. Educating yourself about transplant medications before receiving a transplant will help you know what to expect.

The Transplant Evaluation, So Much to Learn: A Patient's Perspective
Alana, HD Patient

I felt scared, another group of people that will probe and prod me and ask me a bunch of questions that I had answered too many times before. I sighed and looked over to my husband who had accompanied me. This was going to be a big deal. I was going to get evaluated for a transplant.

I stuck on my plastic smile and walked into my first meeting of many for the day. I met my financial advisor. We went over my insurance and how much it would cost. I came with questions I had written down and waited until I had all the information she had and asked any question that was not answered. It was grueling but it had to be done.

Next up is the person I absolutely adore, Mary Shanahan, my Transplant Coordinator. She was immediately warm and kind and understood that I was a little overwhelmed by the whole process. She put my mind at ease and explained the steps that I would be going through to complete the transplant process. I breathed a sigh of relief and cried a little, the reality was that with my blood type it could take a while to get a donor.

Mary introduced me to Dr. Fernandez who went over the specifics of the transplant surgery.

He said, “It’s always best to have a living donor related to you.”

“Okay, I said, how do you ask your relatives for a kidney?”

Then he said, “It is best to have a donor with the same mother and father.”

Oh, that narrows it down to one person, I thought. Hmm limited options great….oh, Dr. Fernandez is speaking again. “Where is your immediate family?” he asked. I had to tell him that unfortunately my family is miles away and in a different country.

Guess what? Not a problem. Dr. Fernandez and Mary told me that the transplant team can help with visas and the cost of the transplant will be covered by my insurance.

Okay, what else should I know? Well, there is a chance of rejection. Great! You will be on anti-rejection drugs for the rest of your life…awesome! My sarcasm is dripping. Thankfully Mary is there again.

Mary understands that all the information we were receiving was a little overwhelming. She calmed us down, or should I say, calmed ME down and told us what to expect next. My social worker Cindy Wallace, was sweet and helpful. Cindy told me she would be there for any emotional stress that would come with the process. Of course, the last person I met was my dietician, Leslie Appleyard. She reiterated the information I had gotten from the dialysis dietician but now my husband was there so now my restrictions are certain to be enforced! 

I learned several things on my visit to the transplant clinic, but most of all these things: Write any questions you have down, no matter how silly they may seem, someone will answer them for you; bring someone with you for support and to obtain any information that you may miss; make sure you have any documents you may need, medications, insurance and doctor information; and finally smile it is going to be alright.

Transplant Self-Care Issues to Consider While You Are Waiting
Nancy Arnold, MSSW, LSCW

Just like you had a lot to learn when you started dialysis, once you have had your kidney transplant you will have a whole new set of responsibilities for caring for that gift of life.

While you are in the hospital you will have the opportunity to participate in classes specifically tailored to learning about your transplant, your medications, and what you need to do to take care of yourself, improving your chances for a successful outcome. You and your family are encouraged to attend these classes to meet other new transplant recipients as well.

As you recover from your transplant surgery there are other issues that need to be addressed such as; a definite plan in place for obtaining your medications, considering returning to work and what to do if there are changes in your insurance coverage. For example, if you have Medicare (MC) based on your kidney disease only, your MC will end three years after your transplant.  If you have a MC supplement and/or a MC part D plan, those will end at the same time. 

The immunosuppressive medications (IS) that will be prescribed for you are essential to your transplanted organ and they must be taken every day as directed. It is also very important to take the other medications that your doctor has prescribed.  

The immunosuppressive medications are expensive and you will need to have a plan in place for getting these medications when you are discharged from the hospital after the transplant as well as throughout the life of your transplanted organ. Two other requirements of transplant follow up is having lab work drawn monthly, and having follow-up clinic visits annually. As you can imagine, the costs of the medications, lab work, and clinic visits are only manageable with health insurance in place.

If you were working prior to the transplant, we fully expect that you will be able to return to your job after recovering from the surgery. If you have an employee group health plan (EGHP) in place either because of your employment or that of a spouse, you most likely have medication coverage with the group plan.  You will want to inquire about what your co-pays will be with and without the assistance of MC for your IS meds. When MC is the primary payor, MC will cover 80% of the cost of the IS medications and you or your supplement or EGHP will be responsible for the 20%. MC becomes primary 30 months after you are eligible to be on MC. Whenever your EGHP is primary you will need to be aware of what your out-of-pocket expenses will be each month. Even if your co-pays are reasonable, they will add up!

For those persons who are receiving Social Security Disability benefits at the time of transplant, you will need to be thinking about what you will do if and when those benefits end. You can contact the Department of Vocational Rehabilitation in your county (Dane: 242-4800), which offers assistance in finding jobs and educational opportunities for those who want to be trained in a whole new area.

The Social Security office (1-866-770-2262) also has programs to assist persons who have been on disability to be able to return to the work force. With the assistance of these agencies hopefully you will find a job with health insurance benefits.

Another option for health care coverage would be high risk insurance. Wisconsin has a Health Insurance Risk-Sharing Plan (HIRSP). This is an insurance program for persons with pre-existing medical conditions who are unable to obtain private insurance. There are various plans with different premiums depending on the deductible you choose. You can contact the HIRSP program at 800-828-4777 or in Madison 608-221-4551 for more information.

Wisconsin may also use the Wisconsin Chronic Renal Disease Program (WCRD) to assist with renal related medications and health care. This is a state program that can help bring down the co pays for medications. WCRD can assist with costs for labs and clinic visits related to renal concerns. The WCRD program was created to assist persons with high renal related medical costs but not to be the only resource to cover these costs. The WCRD program will only cover renal related medications and care so it is essential for all to have other coverage.

Some pharmaceutical companies offer patient assistance programs (PAP) or co-pay cards to help transplant patients who have very limited income and inadequate or no health care coverage. These programs require applications with income documents required; therefore these programs take time to access. Again, these PAPs are not to be considered as your only resource if you lose your insurance because they only provide help with the medications. The co-pay cards are available to those whose medications are not being covered by Medicare or any other government program.  These cards can decrease the co-pay amount for the Immunosuppressant medication. The transplant social workers can assist with these programs and cards. 

Hopefully this article has offered some "food for thought" for those contemplating transplant as well as those already on the transplant waiting list. Just as there are responsibilities for positive self-care with dialysis, there are different responsibilities related to transplant self-care. Returning to the work force and securing medication and health care coverage especially once Medicare ends are issues that you need to consider as early as possible.  The transplant social workers are available as a support person and resource for these issues. 

2010 Patient Satisfaction Survey: Results and Discussion
John Hensey, Administrator

To everyone who filled out a patient satisfaction survey this year, THANK YOU! There were 70 responses; 14 more than last year.  We hope everyone fills out a survey next year! Your opinion is very important to us as we keep trying to find new ways to serve you better.

Survey results are posted at the Fitchburg and East clinics for you to see. For each of the 18 questions on the survey, we review the average score and percent of top scores given. We also compare results from past years to watch for upward and downward trends.

For all but the “clinic temperature” question on the survey, the average score was above 3.3 (on a scale of 0-4). The top score of 4 was given about half the time on all questions except for the “clinic temperature” score. Even though there is always room for improvement, we think these are great results overall and appreciate your responses. 

As far as the clinic temperature goes, we are planning some follow-up with you in the near future. The blanket you received as a new patient should help to warm you up. One change made to improve the clinic temperature was starting the heating and air conditioning system one hour earlier in the morning. This should help make the temperature more comfortable at the start of the day. Of course, it probably does not help that we do this survey in January!

Responses to three other questions were good but not as high as most of the others. They were: 1) “Timeliness of starting at your scheduled appointment time”, 2) “Your impression of how calm and quiet the clinic is” and 3) “My understanding of good choices for staying healthy”. There will be a follow-up survey to ask you for more detail about these three issues. 

We know a lot of important teaching takes place right away for new patients. It is usually a challenge to understand and remember all the information provided. We will be trying to find new and better ways to help you understand the best choices for your diet and lifestyle as a patient on dialysis.

The two questions that got the highest scores were “Timeliness of staff response when I need help” and “Helpfulness and friendliness of staff members”. Staff members are expected to be very attentive to patient and family needs. We are pleased and proud to see the high scores you gave them in recognition of their efforts.

Thanks again for your opinions. Please be sure to participate (again) next year!