March Board Meeting

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, April 22, 2021 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt January minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. 2. Council office interest Volunteers – what they would like to bring to the council office they are interested in Vote for preferred candidate 3. Stanford CF Quarterly Newsletter – Due start of April 4. Project Update (5:30 – 6:30) a. Virtual council office hours – Jacob/Shawn/Colleen Initial plan discussed and input captured. Jacob will lead with respect to making it available on Instagram. b. Clinic-Patient Opportunities – Shawn No feedback as of yet. Shawn to check in during clinic visit c. Inpatient Preparedness – Shawn Captured feedback, looked good. Soon to be posted on Facebook. d. Discuss potential for enhancement opportunities of virtual interaction between clinic and CF patients – similar to Town Halls that the transplant team have produced. – Elyse Will re-evaluate in the future e. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me is active, virtual aspect may be taking away the perceived uniqueness of the opportunity f. New Member Drive Reminder – reach out to CF patients if you are leading a project 5. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects Patient Encounters – Jacob/Colleen Yoga for CF patients Extensions of pharmacist/virtual visit opportunities 6. Final Comments/Discussion (6:30 – ???) Next meeting May 26, 2021

Feb 2021

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, February 24, 2021 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt November minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. 2. Council office interest Volunteers – what they would like to bring to the council office they are interested in Vote for preferred candidate 3. Project Update (5:30 – 6:30) a. Virtual council office hours – Jacob/Shawn/Colleen Initial plan discussed and input captured. Jacob will lead with respect to making it available on Instagram. Ensure Mary notifies caregivers that there is support for them during transition also. b. Clinic-Patient Opportunities – Shawn No feedback as of yet. Shawn to check in during clinic visit c. Inpatient Preparedness – Shawn Captured feedback, looked good. Soon to be posted on Facebook. Working with Kevin H. on identifying issue with posting to blog webpage. d. Discuss potential for enhancement opportunities of virtual interaction between clinic and CF patients – similar to Town Halls that the transplant team have produced. – Elyse Council members to give additional consideration with respect to how to enhance current clinic offerings, incorporating current newsletters & educational conference into comprehensive plan e. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me is active, virtual aspect may be taking away the perceived uniqueness of the opportunity f. New Member Drive Reminder – reach out to CF patients if you are leading a project 4. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects Patient Encounters – Jacob/Colleen Yoga for CF patients Extensions of pharmacist/virtual visit opportunities 5. Final Comments/Discussion (6:30 – ???) Next meeting March 24, 2021

Jan 2021

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, January 27, 2021 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt November minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. 2. Project Update (5:30 – 6:30) a. Pharmacy aide for CF clinic – Amy/Brook Betts Sideline for now – a funding issue which we have no influence b. Virtual council office hours – Jacob/Shawn/Colleen Initial plan discussed and input captured. Jacob will lead with respect to making it available on Instagram. Investigate method to improve awareness for transitioning pediatric patients. c. Clinic-Patient Opportunities – Colleen Shawn to contact Paul to get clarification on “clinic flow” – should be prescriptive with regards to suggestions on questionnaire, desired contacts, and time capture. Pull in MyHealth update to this. d. Inpatient Preparedness – Shawn Captured feedback, looked good. Provided as input to quarterly newsletter. Will be posted on blog as well as Facebook. e. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me is active again and still going well. f. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects Patient Encounters – Jacob/Colleen Yoga for CF patients Extensions of pharmacist/virtual visit opportunities 4. Final Comments/Discussion (6:30 – ???) Next meeting February 24, 2021

Nov 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, November 25, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt October minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. 2. Project Update (5:30 – 6:30) a. Pharmacy aide for CF clinic – Amy/Brook Betts Internal to clinic discussion b. Virtual council office hours – Jacob/Shawn/Colleen Waiting for feedback from clinic on use of Instagram. Idea is to also support mentor type activities as part of the council office hours, so mentor project is now part of this. Shawn to check during meeting with Meg. c. Patient Encounters – Jacob/Colleen Get Colleen & Jacob in contact w/ PFAC education lead d. Clinic-Patient Opportunities – Colleen Talk w/ Dr. Mohabir on clinic needs e. MyHealth update – Shawn Elika has updated questionaire. Colleen & Mary to pursue encouragement of MyHealth to incorporate. f. Yoga for CF Patients – Olivia Person formulating program ideas targeted for February newsletter g. Inpatient Preparedness – Shawn Captured feedback, looked good. Provided as input to quarterly newsletter. Will be posted on blog as well as Facebook. h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers i. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting ????

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, October 28, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt September minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. For October meeting, consider next meeting may not be until January. 2. Project Update (5:30 – 6:30) a. Pharmacy aide for CF clinic – Amy/Brook Betts Elika is promoting need for pharmacist support within clinic. Transitioning patients from peds is helping highlight the need. Virtual visits (pre- and post-clinic) would be very beneficial b. Virtual council office hours – Jacob/Shawn/Colleen Investigate further on execute methodology. Potential use of Facebook or another platform such as Instagram. Assume low interest at first. c. Promotion of mentor program – Shawn/Elyse Mary to check on incorporation of support availability to peds prior to transition. May incorporate into office hours. Emphasize informality – this is not social work d. Patient Encounters – Jacob/Colleen Get Colleen & Jacob in contact w/ PFAC education lead e. Clinic-Patient Opportunities – Colleen Talk w/ Dr. Mohabir on clinic needs f. MyHealth update – Shawn Elika is in favor of the idea and will pursue. Shawn will reach out to Elika for update. g. Yoga for CF Patients – Olivia Found volunteer to help get information to CF patients. Will post information on Facebook to measure interest h. Inpatient Preparedness – Shawn Started capturing list of content that would be considered valuable, will send out for review prior to the next meeting. i. Quarterly Newsletter Input – Shawn j. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers k. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting ????

Notes for Sept Advisory Board meeting

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, September 23, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt August minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you 2. Project Update (5:30 – 6:30) a. Pharmacy aide for CF clinic – Amy/Brook Betts Elika is promoting need for pharmacist support within clinic. Transitioning patients from peds is helping highlight the need. Virtual visits (pre- and post-clinic) would be very beneficial b. Patient Encounters – Jacob Get Colleen & Jacob in contact w/ PFAC education lead c. Promotion of mentor program – Shawn/Elyse Mary to check on incorporation of mentor availability to peds prior to transition Colleen to talk with Siri on mentoring program at CFRI d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, investigate ability to include in virtual visit process. e. MyHealth update – Shawn Need a contact for MyHealth to address patient questionnaire availability online. Colleen & Mary to investigate further. f. Yoga for CF Patients – Olivia Found volunteer to help get information to CF patients. Will post information on Facebook to measure interest g. Inpatient Preparedness – Shawn Will check into documenting tips for people heading into the hospital h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers i. Virtual council office hours – Jacob/Shawn Informal office for discussions, availability for new patients transitioning. Incorporate virtual meetings for inpatients j. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting October 28, 2020

Aug 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, August 26, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt May minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you 2. Project Update (5:30 – 6:30) a. Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts Elika is promoting need for pharmacist support within clinic. Transitioning patients from peds is helping highlight the need. Virtual visits (pre- and post-clinic) would be very beneficial b. Patient Encounters – Jacob Update from SAYAC PFAC meeting on Thursday to discuss c. Promotion of mentor program – Shawn/Elyse Investigate need on pediatrics side d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, investigate ability to include in virtual visit process. e. MyHealth update – Shawn No update f. Yoga for CF Patients – Olivia Found volunteer to help get information to CF patients. Will post information on Facebook to measure interest g. Inpatient Preparedness – Shawn No input from Living Breath, awaiting further input as captured h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers i. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Virtual meetings for inpatients – aligns w/ in-patient yoga • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting September 23, 2020

July 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, July 22, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt May minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you 2. Project Update (5:30 – 6:30) a. Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts Things looking hopeful for pharmacist addition to adult staff. Transitioning patients from peds is helping highlight the need. Interested in the possibility of virtual visits pre- and post-clinic visits b. Patient Encounters – Jacob Response received, a fellow PFAC is looking to have an education focused event for medical students/residents that may be a chance to collaborate as there scope has not been defined. Seems like an interesting concept, would align with our other efforts in helping educate medical students. Could be expanded to include “refresher” newsletters to current practitioners. Still missing is a methodology to capture information which would seem to need a broad scope, perhaps Stanford-wide c. Promotion of mentor program – Shawn/Elyse Posted on Facebook, any additional thoughts? d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, so questionnaire will be updated and posted on Facebook page as to its potential use. e. MyHealth update – Shawn No update f. Yoga for CF Patients – Olivia Primary focus is yoga for CF patients. Suggestions to contact Stacy at CFRI as well as suggesting a routine that can be used for in-patients g. Inpatient Preparedness – Shawn Initial ideas – potential to work with Living Breath h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program ending for this year i. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting August 26, 2020

June 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, June 24, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt May minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you 2. Project Update (5:30 – 6:30) a. Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts Send questions to Amy. Next steps would be a focus. b. Patient Encounters – Jacob Contacted education PFAC – no response yet. Brian to follow-up with PFAC lead c. Promotion of mentor program – Shawn/Elyse Find ways to make people aware of the mentor program d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, so questionnaire will be updated and posted on Facebook page as to its potential use. e. MyHealth update – Shawn No update f. Yoga for CF Patients – Olivia Primary focus is yoga for CF patients. Suggestions to contact Stacy at CFRI as well as suggesting a routine that can be used for in-patients g. Inpatient Preparedness – Shawn Initial ideas – potential to work with Living Breath h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program ending for this year i. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting July 22, 2020

May Agenda 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, May 27, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt February minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you 2. Project Update (5:30 – 6:30) a. Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts Update – contact Brook for report b. Patient Encounters – Jacob Update – check with new PFAC on collaboration c. Clinic-Patient Opportunities – Shawn/Kate • Patient questionnaires should be revisited, is considered valuable. Shawn to check with clinic during next visit. d. MyHealth update – Shawn Check on incorporation of questionnaire (above) e. Bodywork & Value for CF Patients – Olivia Has been collecting information related to bodywork highlighting benefits, primarily focused on children and young adults. Will summarize as a resource for patients. f. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me update as available g. Inpatient Preparedness – Shawn Initial ideas h. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Family Planning – TBD

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Wednesday, March 25, 2020 from 5:30pm-6:50pm 

Location: WebEx

Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Please have this copy of the agenda and attachments with you during the meeting.

 

Agenda

1.    Adopt February minutes (5:30)

Please review Shawn’s minutes on the blog or via his email previously sent to you

2.    Project Update (5:30 – 6:30)

a.    Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts
Update – contact Brook for report

b.    Patient Encounters – Jacob
Update – check with new PFAC on collaboration

c.    Clinic-Patient Opportunities – Shawn/Kate

·         Patient questionnaires should be revisited, is considered valuable.  Shawn to check with clinic during next visit.

d.    MyHealth update – Shawn
Check on incorporation of questionnaire (above)

e.    Bodywork & Value for CF Patients – Olivia
Has been collecting information related to bodywork highlighting benefits, primarily focused on children and young adults.  Will summarize as a resource for patients.

f.     Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me update as available

g.    Inpatient Preparedness – Shawn

Initial ideas

h.    New Member Drive
Reminder – reach out to CF patients if you are leading a project

3.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

·         Family Planning – TBD

4.    Final Comments/Discussion (6:30 – ???) 
Next meeting April 22, 2020

 

 

 

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Wednesday, September 25, 2019 from 5:30pm-6:50pm 

Location: WebEx

Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Please have this copy of the agenda and attachments with you during the meeting.

 

Agenda

1.    Adopt August minutes (5:30)

Please review Shawn’s minutes on the blog or via his email previously sent to you

2.    Project Update (5:35 – 6:15)

a.    Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts
Update

b.    Memorial Space at Stanford – Ed
Waiting to review final wording, location of artwork

c.    CF Encounters – Jacob
Sent email to Sarah Foad to see how to engage w/ Stanford efforts, will check again

d.    Bodywork & Value for CF Patients – Olivia
Has been collecting information related to bodywork highlighting benefits, primarily focused on children and young adults.  Will summarize as a resource for patients.

e.    Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me end of year event went very well, highly recommended, starts again in September

f.     Clinic-Patient Opportunities – Shawn/Kate
As needed

g.    MyHealth update – Shawn
App includes an inpatient section of MyHealth that is very informative and provides immediate access to test results

h.    Inpatient Preparedness – Shawn

Initial ideas

i.      New Member Drive
Reminder – reach out to CF patients if you are leading a project

3.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD

4.    Final Comments/Discussion (6:15 – ???) 
Next meeting October 23, 2019

 

 

 

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Wednesday, August 28th, 2019 from 5:30pm-6:50pm 

Location: WebEx

Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Please have this copy of the agenda and attachments with you during the meeting.

 

Agenda

1.    Adopt May minutes (5:30)

Please review Shawn’s minutes on the blog or via his email previously sent to you

2.    Project Update (6:00 – 6:30)

a.    Memorial Space at Stanford – Ed and Colleen
Artwork selected, next step plaque wording

b.    CF Encounters – Jacob
Has some ideas and will begin to develop them once school has ended

c.    Virtual Clinic Proposal/Online Collaboration – Amy
No update from Russell – will continue to pursue, residents arrive in July.

d.    Bodywork & Value for CF Patients – Olivia/Jacob
Project scope will be defined, reviewed at next meeting

e.    Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me end of year event coming soon, highly recommended

f.     Something I would like to talk about in August is maybe creating a system in which we could keep track and reach out to our CF patients in case of some type of disaster or emergency.  This way we could see if they are all right or need some type of assistance.

g.    Clinic-Patient Opportunities – Shawn/Kate
As needed

h.    MyHealth update – Shawn
No further information

i.      New Member Drive
Reminder – reach out to CF patients if you are leading a project

3.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD

ii      Inpatient Preparedness

Final Comments/Discussion (6:30 – ???) 
Next meeting September 25th, 2019

Everything You Always Wanted to Know But Was Afraid To Ask About Lung Transplant

 

At What Point Will I Need a Lung Transplant?

 

This question has most likely crossed the minds of most individuals with Advanced lung disease caused by Cystic Fibrosis (CF). 

 

The Initial Conversation

 

Whether initiated by you or your CF care team, it is essential that you have an open and honest discussion with your CF care team about your desires and what you can expect throughout the lung transplantation process. Having this candid conversation will help you to start thinking about the benefits and risks of having a double lung transplant. 

 

Your doctor may suggest that you may be a candidate for a double lung transplant if your CF lung disease is not responding well to other therapies.  The criteria for a referral to the transplant team may include if a patient’s FEV1 falls below 30%, and if a patient experiences a clinical decline with increasing frequency of exacerbations and/or hospitalizations. Additional factors may include non-invasive ventilation, worsening nutritional status, pneumothorax and hemoptysis. At Stanford Hospital, doctors perform lung transplants on patients from 12-70 years old.  Doctors often refer to what is called the “transplant window”.  You must be sick enough to need a transplant but well enough to survive the surgery and recovery process.  If having a transplant is not your preference, doctors will never mandate that you go through the program. You are always in control of deciding whether to be evaluated for a transplant. Instead, some people decide that they want to live the rest of their lives on their own terms. There is nothing wrong with choosing that path.

 

If the decision is to go ahead and be evaluated for a transplant, it must be understood that additional factors go into the evaluation process and that you are not guaranteed acceptance into the program.   The criteria for the patient that must be met include results from a series of medical tests, a psychological evaluation, confirmation that a social support system exists, and financial means can be a factor.  Due to the extreme shortage of organ donors, these factors are combined to create an allocation score that reflects a patient’s need and probability for a positive outcome and recovery. 

 

Life Expectancy for a Double Lung Transplant Patient

 

Research into how to extend the lifespan of a post-transplant patient is a very high priority for many doctors and researchers in the field of transplant.   For individuals with CF, more than 80% of lung recipients are still alive after one year, and more than 50 percent are still alive after nine years. (CFF.org)  Areas of study include: improvements in surgical techniques, immunosuppressive medications, post-transplant care procedures and the methods to preserve donor organs until they can be transplanted.

 

 

 

What to expect during the evaluation process?

 

There are two types of lung transplant.  One is a single lung transplant and the other is a bilateral lung transplant. Individuals with CF always require a bilateral transplant.  This is because the chronic infections present in CF lungs will pass from the disease infected lung that would remain, and thus infect the newly transplanted lung causing the possibility of infection and worse yet, rejection.

 

Preparing for your transplant: a personal prespective

 

The waiting time for an acceptable donor set of lungs can vary from 24 hours to several years.  What I personally was told to do during this period of time was to get in the best shape possible and gain as much weight as I could.  This seemed to be a huge contradiction to what one is feeling able to do at this point in time when health is precariously variable and quality of life is rapidly diminishing.  I literally went into “training mode” preparing for when I would receive “The Call”.    This proved to be incredibly beneficial.  One of the key medications used for immunotherapy post-transplant is Prednisone.  This medications at high doses causes terrible muscle fatigue and wasting.   Additionally, for 3 months post-transplant, sternal precautions are in place and you cannot use your arms to lift yourself from bed, sitting position, bathroom duties etc.  Strong quadriceps are very important.  I immediately noticed mine declining while in the hospital and on high dose steroids.  Having physically prepared for this surgery, I was able to stand up in the ICU within 24 hours post-transplant. 

 

Post-transplant recovery can vary significantly among individuals.  The time in the ICU, mid ICU and ultimate length of stay in the hospital is extremely variable. The doctors try to discharge patients as soon as they are physically able in order to avoid a hospital acquired infection.  Complications from surgery can occur as with any surgical procedure.    A positive strategy for me was to focus on what I could control and remain as optimistic as possible.  Getting up and walking around the hospital to begin pulmonary rehabilitation is highly encouraged as soon as the patient is able.  Once again, this varies from patient to patient.

 

Transitioning from the “CF Patient” world to the “Post-Transplant world” comes with a learning curve that becomes second nature overtime.  This includes an entirely new set of medications, lifestyle changes and precautions. With the gift of breath, these items might pose some challenges but are not big obstacles to incorporate into your new life.   

 

It is highly encouraged to begin a pulmonary rehabilitation program post-transplant when a patient feels ready.  As with CF lungs before transplant, exercising post-transplant is just as important.  This effort will hopefully reflect in improved pulmonary functions tests (PFTs).  Yes, PFTs are just as critical for pulmonary health status post-transplant.  Post-transplant, PFTs can be the first indication if rejection or infection are present in the new lungs.  Bronchoscopies are performed as a tool to determine if an infection or type of rejection might be present. 

 

It is important to remember that with transplant a patient is not cured of their CF.  The diabetes and GI complications are still present.  Ongoing sinus issues remain a concern, the infections in the sinuses can pose a risk for lung infections and a further risk for rejection.   On a more positive note, the pulmonary issues which consumed the most time, effort and energy are hopefully vastly improved. The goal being no more need for oxygen and no more ongoing requirement for aerosolized medications to breathe.  Of course, there might be bumps along the road that might require a temporary need for those familiar medications but hopefully not an everyday necessity. 

 

Most CF patients will experience a vastly improved quality of life post-transplant where activities that might have been a thing of the past are now considerably easier to do.  There will always exist a close partnership between the patient and the transplant team.  This is just a given within the transplant world as was the case pre transplant. 

 

Financial aspects of How to Pay for Your Transplant

 

The following information was provided by Suzanne Tegio, Transplant Financial Coordinator with Stanford Health Care Adult Solid Organ Transplant & MCS Program, to assist patients with the financial concerns when considering a transplant.

 

If patients present with no insurance, Stanford Transplant Financial coordinators will explore with the patient the following:

·         If they have an option to enroll in coverage via a spouse/domestic partner employer group plan

·         Medi-Cal

·         Covered CA

·          

Typically, the Covered CA website will screen for both Medi-Cal and Covered CA eligibility

·         https://dhcs.ca.gov/services/medi-cal/Pages/ApplyforMedi-Cal.aspx

·         https://www.coveredca.com/

 

For patients that are considered underfunded i.e. Medicare only coverage with no supplement:

·         We will refer them to Medi-Cal – same link above

·         HICAP (Health Insurance Counseling and Advocacy Program)

·         https://www.hicap.org/

·         Insurance broker of their choosing for possible Medigap/Supplement plans

·         Unless patient can agree to all financial liabilities with Medicare alone, they are not considered under funded

 

Fundraising is always encouraged (these are not endorsements):

·         https://patients.transplants.org/

·          

 

 

 

 

 

A personal perspective from Bonnie Grossman, (bilateral lung transplant August 2015, UCLA)

 

Every hospital has different insurance requirements that cover Transplant surgery.  If your hospital accepts Medicare, you will also need to be sure that you have a good prescription plan.  Try to have a back-up private insurance that will cover your medicines.  Medicines post-transplant can be costly, so this is an important detail to cover. 

 

 

Residential requirements while living away from home for transplant pre and post.:

 

For Pre-transplant, it is necessary to be within a 4-hour drive to get to the hospital once one gets the call that they have a donor organ/match for you.  It is helpful to have a packing list for post-transplant needs and comforts for both you and your caregiver. Since you will be living away from home for 12 weeks +, pack with getting well in mind but still in recovery. A list might include: small white board and pens for right after you awake but still intubated, exercise clothes and sports shoe, flip flops/slippers, comfortable (not tight clothing),  masks, Purell bottles, favorite pillows, as well as, a wedge pillow that you will need to sleep elevated for a period of time to minimize reflux issues getting into the new lungs, computer or other electronic devices, anything to do with managing household finances, Meds for spouse and likewise clothes and comforts for them. Depending upon where you live post-transplant you may want to bring other household items.

 

In terms of housing options there are many internet sites: Airbnb, VRBO, Craig’s list, or using a realtor to find a short-term rental from the MLS., or a family member.  It is important to think about being in a residential environment where you will not be exposed to small children or crowds of people who may not be aware of your immune compromised situation. Also, there may be a hospital sponsored facility that you will want to get more information about from your social worker. It is best to find a place within a 30 minutes’ drive as you will have many appointments post-transplant with your medical team and with pulmonary rehabilitation.

 

What is most difficult about looking for post-transplant housing is that you cannot plan ahead for timing on when to start housing and for how long you will need the housing because everybody’s situation and outcome is different.  So, it is important to not stress about it and let your caregiver take care of this while you are recovering.  This can be something they do while you are being cared for while in the hospital.  Look for temporary accommodations that are easily accessed without stairs or physical barriers is preferred . A place with fresh air and good ventilation is a nice feature as well.

 

 

While the journey to transplant may feel incredibly daunting, the best suggestion is to take it a day at a time.  There will be numerous doctor appointments, a battery of diagnostic tests and exams, and the inevitable waiting period.  In the end, the hope of both Physicians and individuals, is an improved quality of life and longer lifespan.  With this incredible Gift of Life, a whole new life begins!

 

 

Elyse Elconin Goldberg (Bilateral Lung Transplant September 2013)