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Meeting in a Minute PHA’s Growing Meeting Topic Guide

To Breathe or Not to Breathe When Transplant is the Question

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Introduction ....................................................................................... 5

Why Focus on Transplant? ................................................................................... 7

How Can I Integrate This into Other Meetings? ................................................... 8

Social vs. Educational .......................................................................................... 9

What Should I Know About Transplant? Fact Sheet ............................ 10

Activities and Discussion Questions ................................................... 11

Let’s Break the Ice! ............................................................................................ 12

Explore Transplant with Fun Activities ............................................................... 13

Lead a Transplant Discussion ............................................................................. 14

Speaker Suggestions ......................................................................... 16

Invite an Outside Speaker .................................................................................. 17

Other Speakers .................................................................................................. 18

Sample Agendas ............................................................................... 20

Additional Resources ........................................................................ 23

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“I’m a leader and I still have so many

questions about transplant: How

many PH patients go through

transplant? How many patients find

that transplant is their only option for

survival? How relevant is this topic to

the people in my group?”

–Mike Robinson

Support Group Leader

Jacksonville, Fla.

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Introduction

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Let’s play a game! I’ll read some statements about transplant, and you can tell me if they are true or false. *

*These statements are taken from the

fact sheet on page 10.

#1: Lung transplant is an experimental procedure. True? False?

False. The first successful heart-lung transplant for a PH patient was

performed in 1981. The number of transplants has been growing

consistently since then.

#2: Speaking with a mental health professional is part of the transplant

evaluation process. True? False?

True. Patients being evaluated for lung transplantation undergo several

kinds of testing including examination by psychiatrists, pulmonologists,

surgeons, and social workers.

#3: Once I’ve received a lung transplant I’m cured and no longer need to

monitor my PH. True? False?

False. Patients must get frequent blood tests for monitoring and follow up

regularly with their transplant doctors for routine tests. Transplant is

often referred to as a treatment rather than a cure.

How did you do?

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Why Focus on Transplant?

Based off of the questions on the previous page, were you surprised by what you don’t know about transplant? If so, that’s not uncommon. Many people in your support group may be completely in the dark about transplant. As a support group leader you are in an amazing position to be able to inform those in your group so they can make smart decisions about their health. With careful planning, you can host an educational meeting on transplant that doesn’t pressure your members to choose one option or the other.

1. Transplant is Relevant: Many PH patients will be encouraged to consider being evaluated for transplant at some point in their lives. While it may not be on their minds at the moment, a doctor my breach the subject in the future.

2. Education Prepares Patients: It is easier to learn about your options with an open mind when you don’t feel under pressure to quickly choose your next step. Help others learn about transplant before the need arises.

3. Discussion Dissolves Stigma: Often patients feel alone when undergoing evaluation for transplant. By hosting a meeting about transplant you demonstrate that your meeting is a place where people can feel comfortable discussing what they are going through.

4. See the Bigger Picture: Concerns about transplant can begin when a patient is evaluated or listed for a transplant. You can help by being attentive throughout the entire process.

5. When Other Treatments Fail: Transplant is a treatment option for PH patients when all other medication options have been exhausted. Consider mentioning transplant alongside other treatments so patients see where it fits in the spectrum of options.

6. Education Gives Perspective: Transplant offers a potential cure for PH, but comes with many side effects of its own. Some say that it is like replacing one illness with another. Your meetings can clear up misconceptions that members have about transplant.

7. Keep Patients Connected: Sometimes after transplant a member will feel like they no longer belong in your support group. Don’t lose active and valuable members who bring comfort to others! Keep them connected to your group by demonstrating that their experience has a place in your meetings.

PHA Tip:

If you are worried how a certain meeting topic will go over with your support group, think about surveying members on some different options, and let them pick!

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How Can I Integrate This into Other Meetings? For one reason or another you might not choose to dedicate a whole meeting to transplant. Some leaders like to line up their speakers and meeting topics a year in advance and simply don’t have time to bring up transplant. Others might feel that the topic is too frightening to discuss or that it isn’t relevant to the members of their group. If you aren’t entirely convinced that you should have a meeting on this topic, try integrating it into another meeting as a smaller part of the discussion, and gauge the interest of your members. You might be surprised!

Transplant Breakouts: Consider having discussion or question and answer session at the beginning or end of your meeting. This allows members to choose whether to participate in the conversation or just come for the regular meeting. If you want to make the breakout session special and informative, invite a medical professional who can answer questions about transplant. If this conversation is popular, it might be time to have a full meeting focused on transplant!

Organ Donor Awareness: Not everyone in your group may be thinking about transplant, but they may be inspired to see how organ donation can give seriously ill patients a new life. Have a meeting that shows the impact of transplant but also teaches members and their families how they can save someone’s life by becoming a donor or advancing the cause of organ donation. Check out the resources section of this booklet to find some organizations that might be helpful in finding a speaker.

Keep It Simple: Find ways to include information about transplant in other meetings. For instance, if you are having a meeting on PH treatments, ask the speaker to mention transplant as a treatment. If you are having a meeting on emotions and coping with chronic illness, make sure to include the perspective of post-transplant patients. Even a simple mention can help keep patients aware and informed.

Member Perspective: On page 19 we cover how a member of your group who has undergone

transplant can be an interesting speaker. Consider inviting a member to tell a personal story as a smaller

part of an already planned meeting.

PHA Tip:

A discussion is a great way to determine what your group is curious about learning. Take notes about what your group is chatting about, and see if you can incorporate their interests at later meetings.

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Social vs. Educational The structure of support group meetings varies quite a bit between groups. There are groups with 40 members and groups with six. Some groups meet in coffee shops, others at hospitals. The makeup of your group and the preferences of your members can impact the style of your meetings. Find a way to introduce this topic that fits your group’s typical meeting format.

Social: While transplant is a topic that

medical professionals are best prepared to handle, hosting a meeting on this subject without an educational presentation also has benefits.

You may first approach the subject of transplant during a meeting focused on patients sharing their stories. Then you as the leader are able to clear the air and get people talking about something that they may have felt uncomfortable bringing up.

When members are sharing their stories, think about posing a question like, “Has anyone’s doctor brought up the possibility of transplant?” Ask if they would like to share. Social meetings that touch on transplant can help keep members who have undergone transplant attached to the group. After transplant, support group members may find less of a reason to attend meetings with medical presentations with subjects like “PH Treatments” or “Oxygen.” If you invite these members to attend they may stay more involved and help others learn about transplant.

Educational: The best way to

eliminate confusion about a difficult concept is to listen to an expert speak about it. You can host an educational meeting in several ways. In the “Speaker Suggestions” section of this booklet there are a few ideas to help you find the right person to present to your group. See page 17.

“Feelings of worth can flourish only in an atmosphere where individual differences are appreciated, mistakes are tolerated, communication is open, and rules are flexible – the kind of atmosphere that is found in a nurturing family.”

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What Should You Know About Transplant?

FACT SHEET

“Be knowledgeable. Find out if you are a candidate. Even if you don’t think you need a transplant that badly, start the process early. Complete the tests. Time is valuable.”

–Chris Mumbert

Transplant patient and support group member Orlando, Fla.

We’ve asked two transplant doctors, Dr. Raymond Benza and Dr. Patricia George, to present the facts that all leaders should know about transplant. Email SupportGroups@PHAssociation.org for a copy of this Fact Sheet. History of Transplant • The first successful heart-lung transplant in a primary pulmonary hypertension (PPH) patient was performed in

1981 at Stanford University. • Transplantation was originally the only treatment option for patients with PPH. • The number of lung transplants has been growing consistently since the first lung transplant in 1986. Transplant and PAH • Double lung transplant is the most common type of transplant for patients with PAH. • Patients with idiopathic pulmonary arterial hypertension (IPAH) make up about 5% of all double lung

transplants. • Patients with pulmonary hypertension (PH) associated with other diseases such as COPD, pulmonary fibrosis

and connective tissue disease are also commonly recipients of transplant. • Generally, patients are considered for transplant if they have a poor functional status (NYHA Class III or IV) or

their disease is progressing despite IV epoprostenol therapy (Flolan) or the equivalent. • It is better to refer patients for transplant early rather than too late. This allows time for the transplant team

to follow the course of the disease, to address any potential risk factors for transplant, and for the patient to fully consider lung transplant without any rush or pressure.

Transplant Evaluation • Receiving a transplant evaluation does not obligate you to undergo a transplant. • The pre-transplant evaluation involves a number of people and procedures:

o In addition to the basic laboratory, radiologic and cardiovascular testing, you will undergo any age-appropriate screenings (i.e. mammogram, PAP, colonoscopy, etc.). You will also be examined by a pulmonologist and a surgeon. You will need to talk with a psychiatrist and a social services representative as well.

o Most importantly, education is critical during the evaluation process. Your transplant team will provide you with educational resources and answer your questions.

Lung Allocation Scores • When getting listed for transplant, your data will be used to calculate a lung allocation score (LAS).

o A LAS is a score assigned by the United Network for Organ Sharing (UNOS) that dictates your priority for transplant. These scores range from 0-100. The goal is to minimize time on the wait list, especially for the sickest patients.

o Some factors used in the LAS calculation include pulmonary arterial systolic pressure, oxygen saturation while resting, age, body mass index, functional status, diagnosis, 6-minute walk distance and others.

o Currently, the LAS system does not accurately reflect the disease severity in PAH patients, but the system may be changing to better serve PAH patients in the coming years.

Life After Transplant • While transplant provides a permanent solution to pulmonary hypertension, allowing for the discontinuation

of PAH medications, it is often referred to as a treatment rather than a cure. o Patients must get frequent blood tests for monitoring and follow up regularly with their transplant

doctors for routine tests. o Patients after transplant must take a combination of transplant medications for the rest of their lives.

Many of these medications have side effects. o Despite medical therapy, patients are often treated for infections or rejection after transplant.

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Activities and

Discussion Questions

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Let’s Break the Ice!

Does your group love to chat before, during and after meetings? Make sure, even if you have a full meeting agenda, to set aside some time for the group to socialize. You can help your members be more comfortable and engaged by starting your meetings with icebreakers that let everybody introduce themselves and feel at ease. Think about including your speaker so he or she can meet everyone too!

Question Time: Posing a question to the

group as they introduce themselves can build a sense of community and prepare the group to learn more about the subject. Start with a lighthearted question to keep spirits high or ask one related to the topic of the day so that your speaker knows what the group is interested in. Here are some possibilities:

• If you could have one superpower, what would it be and why? • What was the last thing that really made you laugh?

• What are you most interested in learning about transplant?

Packing My Bag: If you like to start your meetings with a laugh, try doing an icebreaker that

requires using your memory. Have everyone take a turn introducing themselves by giving their names and saying one thing they packed for their trip to the meeting that begins with the same letter as their first name (they don’t actually need to have the object with them; it’s just a game). The trick for this game is that you need to remember everything that was said before you. For example the game might go like this: Person 1: My name is Cindy and when I packed my bag for the meeting I took crayons Person 2: My name is Garth, and I packed crayons and my GPS. Person 3: My name is Olivia, and I packed crayons, my GPS and oxygen And so on…. The more people in your group, the harder it will be to remember. It’s alright for members to take notes if they’re self-conscious about forgetting. You can include PH-specific objects or anything that pops into your head. It’s also a good way to learn the names of people who you don’t know yet!

Where Was I?: When doing introductions, ask your members to remember back to a

different time and recall what they were doing then. Ask people to give their name and share what they were doing at a particular date, for example the summer of 2010. This icebreaker can be inspirational if you choose a date within the last year or two, because then attendees can see what health milestones they’ve had. Alternatively if you want a response, that’s more of a general conversation starter, ask about a date further back in the past such as “What were you doing in 1987?” This gives members the chance to share funny stories from their earlier years.

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Explore Transplant with Fun Activities Games are a really great way to get your group engaged in learning about their health. A few of our favorite games to play at support group meetings can be easily altered to address transplant.

Transplant Jeopardy: Our first Meeting

in a Minute kit, No Speaker? No Problem!, introduced the idea of playing PH Jeopardy as a fun way to test your group’s knowledge on a topic. Dust off your old Jeopardy board and use it to ask questions about transplant and organ donation. This game can be used for nearly any meeting topic, so consider crafting a board creating a set of questions for any meeting that you think could use a fun game. For more details, read the activity section of the “No Speaker..” kit.

Mythbusters: One other way to bring

excitement to a meeting is having an informal competition. The simplest game to organize? Transplant Mythbusters! Make up a list of true-or-false questions from the information in this topic guide. Use the factsheet and information on www.PHAssociation.org/Patients/Transplant to make a list of 10-20 “facts” (they don’t all need to be true.)

Read each fact aloud and have members raise their hand if they think it is true. Then have members raise their hand if they think it’s false. Once everyone has voted, reveal the correct answer. Have members keep track of how many questions they got right. At the end of the game, find out who knew the most about transplant. If you have freebies to give away, think about bringing a couple for prizes.

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Lead a Transplant Discussion

Whether you invite a speaker to your meeting or show films instead, your group always benefits from having time to talk. If you plan ahead, you can be prepared for very productive conversations.

Show of Hands: Get members talking

by asking a few yes-or-no questions first. After you ask a question to the whole group, you can ask people to share more about their answer. For example, if a speaker gave a talk at your meeting, you could ask your group afterward “Do you know more about

transplant now?” and ask them to raise their hands if they do. Based on their responses you can pick follow-up questions to pose to certain people such as “What was one fact that stood out to you?” for people who agreed, or “What do you still want to know?” to people who didn’t raise their hands. This is especially helpful for situations where members are shy. Seeing that others’ initial responses are similar can put them at ease.

Let Them Ask: Good conversations grow out of topics that attendees are passionate about. Ask your

members to pose some questions that they want to talk about. If your meeting space has a chalkboard or whiteboard, write out the questions so the group can see them. Otherwise write the questions out with a pen and paper to remind yourself of what the group wants to discuss. Refer back to your list throughout the discussion to keep it moving.

Question Cards: If your group is a bit bigger, it can be difficult for everyone to get a chance to

speak. One solution to this is to use question cards for small group conversation and then report on each group’s answers in a conversation with the rest of the group. Prior to the meeting think up 3-5 questions that might inspire conversation. Type them up or write them out and make several copies. You can have your group break into smaller clusters of 3-10 to talk. After 15 minutes or so you can all get back together and members can report on the favorite topics they discussed in each group. This way everybody gets a chance to talk. If you are having a speaker at your meeting it could be wise to chat with him or her prior to the meeting to get a sense of what will be discussed. This can help you figure out some good related questions.

Possible Questions: • How do you discuss health

challenges with your family? Would you be comfortable discussing transplant?

• Where have you found helpful information about treatment options? About transplant?

• How often have you brought up treatment options with your doctor?

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“Our speaker talked about PH in

general before jumping into

talking about lung transplant.

This set the group at ease and

helped us open up to discussing

transplant. We became much

more knowledgeable and less

afraid of transplant.”

–Jonette Robinson

Support Group Leader

Roanoke, Va.

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Speaker Suggestions

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Invite an Outside Speaker Depending on your group’s interests you can incorporate a speaker in a few different ways.

Clinical Perspective: If members want to focus on the criteria

for transplant and the procedure itself, you could invite a transplant specialist or a transplant coordinator to cover the basics. At the same time, you can invite speakers who can give presentations that apply to everyone whether or not they are currently thinking about transplant. For instance a doctor could cover all different types of PH treatments and include transplant as one of the options. Consider the many different sub-topics related to transplant. Look at the list on the right. Ask your doctor if he or she would be comfortable speaking about any of them. If you don’t know a doctor who will speak on these subjects, you can try to locate one by calling your local hospital’s information desk for suggestions.

Transplant Social Worker: Alternatively you could have a meeting on “Adjusting to the New

Normal.” Many hospitals have social workers who specialize in transplant and can speak to some of the emotional aspects of transplant. A social worker can also give a general talk on how someone with a chronic illness can come to terms with new lifestyle limitations.

Organ Donation Representative: Another option would be to have a meeting about organ

donation. You can invite someone to speak from a group that promotes organ donation. The presentation could teach about the impact organ donation has on patients and encourage activism on organ donation. This is a great meeting for active groups that enjoy participating in advocacy and awareness related activities.

PHA Tip: You may request slides from the February 2012 Second Tuesday Training on Transplant which may be helpful for speakers planning to come to your meeting.

Transplant Presentation Topics:

Preparing for Evaluation

Adjusting to the New Normal

Transplant Q&A

Understanding Transplant Options

I have PH. Do I Need a Lung Transplant?

Talking to Your Family About Transplant

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Other Speakers

Leader as Speaker: Sometimes it can be difficult securing a medical professional to speak at your

meetings. If this is the case, you can be the speaker by presenting factual, up-to-date information on transplantation. Consider asking a physician or physician’s assistant to be present at the meeting to answer general questions. Remember to always advise your support group attendees to seek medical advice from trained professionals. For your convenience, we’ve included a fact sheet that you can use as a speaker on page 10. Use this as a handout for the group after you play a game of Transplant Mythbusters based on the information on the sheet or from www.PHAssociation.org/Patients/Transplant. Alternatively, PHA has hosted several educational webinars on transplant. Find these at www.PHAssociation.org/Classroom. Use the lesson as a starting point for a conversation about transplant.

Member as Speaker: Invite a member who has

undergone the procedure to tell his or her story. This is a good way to keep a patient involved after transplant. Members may feel more comfortable asking a patient some of their out-of-the-ordinary questions like “What does it feel like having someone else’s lungs in your body?” If there are types of questions your guest doesn’t feel comfortable answering, make sure to state that at the beginning of the meeting; encourage the patient establish off-limit topics ahead of time.

Bring Them All Together: Transplant can be a divisive

discussion topic. Using multiple speakers can help present a balanced conversation where many views are represented. Some people you could invite:

Transplant doctor

Transplant coordinator

PH specialist

Transplant social worker

Patient Encourage panelists to prepare a short talk on their knowledge of transplant and to be ready to answer questions.

No longer a PH patient: “When many of the members saw me, they were utterly shocked! They had previously seen me in my condition with PH. I was in a wheelchair and on oxygen. After my transplant I looked and felt so much better. Seeing me made a positive impact on members to want to learn about transplant.”

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“The best part of the meeting was having a member speak about her transplant. It really made it real for us.”

–Chris Morres

Support Group Leader Newport Beach, Calif.

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Sample Agendas

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1. Welcome!

2. Housekeeping

3. Confidentiality statement

4. Announcements

5. Introductions

6. Icebreaker: Packed My Bag

7. Lunch is served

8. Speaker: Stress Management

9. Questions and answers

10. Reminder of next meeting

Invite a Speaker

1. Welcome! 2. Housekeeping 3. Confidentiality statement 4. Announcements 5. Introductions and icebreaker

questions 6. Introduce panelists 7. Speakers: Transplant patient, social

worker, doctor 8. Q&A 9. Wrap up 10. Reminder of next meeting

Speaker Panel

1. Welcome! 2. Housekeeping 3. Introductions 4. Confidentiality statement 5. Icebreaker: Packed My Bag 6. Discussion: Break into small groups

to use discussion cards 7. Report back, group discussion 8. Pass out fact sheets 9. Wrap up 10. Reminder of next meeting

Transplant Discussion

1. Welcome!

2. Introductions

3. Pass out snacks

4. Icebreaker: Where was I?

5. Housekeeping

6. Confidentiality statement

7. Pass out transplant factsheet

8. Play Transplant Mythbusters

9. Wrap up

10. Reminder of next meeting.

Playing Games

Sample Agendas

It’s always smart to write an agenda so your meeting stays organized. Here are some sample agendas

you can use.

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“When I was first diagnosed, my doctor

talked to me about transplant, but not

since. If my group has questions, I will

have a meeting about it. I like to have

meetings that are beneficial to my

members, and I think this is definitely one

of those topics.”

–Deloris Peacy

Support Group Leader

Springdale, Ark.

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Additional Resources

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Additional Resources Still want to learn more about transplant? Want more information to pass on to your group? Read on!

PHA Resources Transplant Section

PHA’s Transplant Section on our website is the hub to all things transplant-related. It includes resources for patients considering transplant, those who have undergone the procedure and caregivers

www.PHAssociation.org/Transplant

Transplant Web Resources

PHA keeps an updated list of additional resources that are helpful for those interested in transplant on our Transplant Resources page.

www.PHAssociation.org/Transplant/Resources

PHA’s Transplant Email Group

A private forum where PH patients, caregivers and transplant recipients can discuss transplant questions and experiences.

www.PHAssociation.org/TransplantGroup

Ideas from Other Leaders Your fellow support group leaders have years of experience and are willing to share their tips:

If you’re on Facebook you can request to join the Pulmonary Hypertension Support Group Leaders group and join in on the conversations leaders are having. www.bit.ly/SGLFacebook

Feel free to share ideas or questions on our Support Group Leader Yahoo Group. If you’re on the list, simply send an email to PHA_SGLeaders@yahoogroups.com or visit www.bit.ly/SGLYahoo

More Resources 1. American Society of Transplantation www.a-s-t.org 856-439-9986

This group’s website has a public policy library, information on legislation, patient information and more.

2. Second Wind Lung Transplant Association www.2ndwind.org 888-855-9463 A forum to provide “support, love, advocacy, education, information and guidance” for people who have had, or are contemplating, lung transplants.

3. TRIO (Transplant Recipients International Organization) www.TRIOweb.org 800-874-6368 TRIO offers information and help to people receiving and awaiting transplantation.

4. UNOS (United Network for Organ Sharing) www.UNOS.org UNOS, an independent agency, has a federal contract to administer the National Organ Transplant Act, enacted by Congress in 1984. Data on survival rates for various kinds of transplants, waiting list time, and much more is available on the UNOS website.

5. Division of Transplantation www.organdonor.gov

A division of the U.S. Department of Health and Human Services, responsible for oversight of the organ and blood stem cell transplant systems in the U.S. and for initiatives to increase the level of organ donation in the country.

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Notes

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801 Roeder Road, Suite 1000

Silver Spring, MD 20910

Phone: 301-565-3004 • Fax: 301-565-3994

Patient-to-Patient Support Line:

800-748-7274

www.PHAssociation.org

SupportGroups@PHAssociation.org