Amy Skiba

About Amy Skiba

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Transplant Talk: The NEW Lung Composite Allocation Score

Continuous distribution will improve the organ matching process by considering all factors about each transplant candidate in a single score.

Source: OPTN


On March 9, 2023 a new continuous allocation score for lungs will be implemented. We held a Transplant Talk on March 2, 2023 with expert speakers from OPTN that discussed the new changes. 

Here are a few key takeaways. You can also access a recording of the Transplant Talk above.

We realize this may cause a level of anxiety for those on the waitlist for lungs. While there are significant changes, the only thing you need to do at this time is to educate yourself on the new score.

If you have questions, talk to your transplant center at your next appointment.

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HOW IT BENEFITS PATIENTS

  • It’s a more fair and flexible system because multiple factors will be considered at the same time
  • Equity is predicted to increase among potential recipients
  • Patients can provide their feedback earlier in the policy development process
  • It’s a single distribution framework that can be adapted to all organ types. 
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RESOURCES

QUESTIONS

If you have questions, reach out to the Patient Services department at (888) 894-6361 or patient.services@unos.org.
They have staff available to answer questions Monday-Friday, 8:30 am-5 pm ET.

Sign up to hear about future Transplant Talks

The Lung Transplant Foundation has monthly webinars—Transplant Talks featuring topics specific to those in the lung transplant community. Sign up to be added to our email newsletter list and be the first to know about upcoming Transplant Talks.
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Transplant Talk: Transplant, Chronic Illness, and Your Relationships

Katie Willard Virant is a licensed clinical social worker and psychotherapist. She writes a monthly column for Psychology Today about living with chronic illness. On Thursday, February 9, 2023 at 7:00 PM EST, expert speaker: Katie Willard Virant joined us for our monthly Transplant Talk series to discuss Transplant, Chronic Illness, and Your Relationships.

Here is the recording of that Transplant Talk. To learn about upcoming talks follow us on Facebook, Instagram or sign up to receive emails.

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Expert Speaker:
Katie Willard Virant, MSW, JD, LCSW, is a psychotherapist practicing in St. Louis.

This Transplant Talk features a discussion on how chronic Illness challenges relationships. 

It’s no wonder that many wedding vows contain a promise to love one another “in sickness and in health.” Chronic illness affects, not only the person bearing the symptoms, but also the person loving them, living with them, and caring for them. As one partner expressed to me, “My wife lives with the illness, and I live with her. So, in a way, I live with the illness, too.”

Relationships and Chronic Illness:  A micro-mezzo-macro approach

by Katie Willard Virant MSW, JD, LCSW

Social workers analyze issues by looking at three levels of a person’s relationships and connections.  The micro level explores a person’s relationship with herself – her beliefs and feelings about herself.  The mezzo level comprises a person’s immediate environment – notably family and friends.  The macro level, which encompasses the larger society, includes governmental, economic and cultural policies and values.  

I had the pleasure of speaking with the Lung Transplant Foundation last week on the issue of relationships and chronic illness.  I used the micro-mezzo-macro approach to organize my talk, and I outline salient points below.

Chronic Illness Barriers to Relationships 

Loneliness is an “unpleasant experience that occurs when a person’s network of social relationships is deficient either qualitatively or quantitatively (Bekhet & Zauszniewski, 2008).”  When we are not getting enough connection, we feel lonely.  This feeling of loneliness is a warning sign alerting us to our unmet need for connection.

Chronic illness interrupts connection by removing opportunities for interactions.  This narrowing of opportunity occurs at the micro, mezzo and macro levels.  

Micro Level

The beliefs we hold about ourselves affect our relationships.  Many people who live with chronic illness carry a feeling of shame about their illness, believing that their illness makes them unlovable.  They feel as if their symptoms make them too needy and devoid of the necessary resources to be good partners, parents, and friends. This belief – often unarticulated – causes people to avoid connection or to “mask” their illness, hiding from friends and family the extent to which their illness affects their daily lives.  

Mezzo Level

Our interpersonal relationships with family members and friends also are affected by chronic illness.  Many people living with chronic illness are familiar with close connections disappearing or making insensitive comments. We may feel despair that other people do not understand what it means to be chronically ill.  

Indeed, many people (consciously and unconsciously) are frightened by the vulnerability that exists in being human.  Our illness brings that vulnerability (and their anxiety) to the forefront, causing them to defend themselves against their painful feelings by distancing themselves from our experiences.  

Read the full article on Psychology Today.

Read Full Article
More articles by Katie Willard Virant
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Transplant Talk: Environmental Factors and Lung Health

Occupational and Environmental Lung Diseases (Indoor Air and Health)

Yuh-Chin T. Huang, MD, MHS, Professor of Medicine, Duke University Medical Center, Durham, NC

Indoor Air Pollution

  • —Individuals spend a large fraction of their time indoors (up to 95%)
  • —Air conditioning is warmer climates and heater in colder climates
  • —Many sources of various airborne pollutants are present indoors
  • —Lower ventilation rates will lead to increased energy efficiency but also can lead to the accumulation of pollutants (including CO2)

Common Indoor Pollutants—

  • Particulate matter (PM)
  • Carbon monoxide (CO)
  • Ozone
  • Environmental tobacco smoke (ETS)
  • Volatile organic compounds (VOCs)
  • Formaldehyde (engineered wood), paint, 4-phenylcyclohexene (carpet), flooring, phthalates (caulks and sealants)
  • Biological pollutants
  • Dust mites
  • Allergens (plants, animals)
  • Molds
  • Radon
  • Asbestos

FACTORS AFFECTING INDOOR AIR POLLUTION-ASSOCIATED HEALTH EFFECTS

  • Age: children, pregnant women, elderly
  • Preexisting medical conditions: allergy, asthma, COPD cardiopulmonary diseases, immunocompromised host
  • Individual sensitivity: genetic traits
  • Exposure levels
  • For long-term effects, there is considerable uncertainty about what concentrations or periods of exposure are necessary to produce specific health problems

INDOOR PM2.5

  • Main sources: diesel engines in trucks, buses, and non-road vehicles (e.g., marine, construction, agricultural, and locomotive)
  • Indoor cooking/biomass burning
  • For outdoor air, EPA NAAQS annual limit: 15 µg/m3 ; 24-hour limit: 65 µg/m3
  • There are currently no federal government standards for PM2.5 in indoor air environments

Health Effects of Indoor PM

  • Exacerbations of existing respiratory diseases
  • Development of chronic lung diseases
    • Asthma
    • COPD
    • Lung cancer (diesel exhaust)
  • Cardiovascular mortality and morbidity
  • Increased susceptibility to respiratory infections
  • Systemic adverse effects

INDOOR OZONE

  • Indoor levels typically track the outdoor levels
  • Indoor sources
    • Laser printers, copying machine, air cleaners with electric or ion generators

HEALTH EFFECTS OF INDOOR OZONE

  • Exacerbations of existing respiratory diseases
    • Asthma
    • COPD
  • Increased susceptibility to respiratory infections

VOLATILE ORGANIC COMPOUNDS (VOCS)

  • Organic chemicals that have a high vapor pressure at room temperature
  • Sources including:
    • Paints, paint strippers, and other solvents
    • Wood preservatives
    • Aerosol sprays
    • Cleansers and disinfectants
    • Moth repellents and air fresheners
    • Stored fuels and automotive products
    • Hobby supplies
    • Dry-cleaned clothing
  • Levels of VOCs are in general 2 to 5 times higher indoors than outdoors
  • There are hundreds of VOCs
Formaldehyde
  • The only VOCs the federal government regulates (as a carcinogen)
  • OSHA (PEL of 0.75 ppm, and an action level of 0.5 ppm)
  • HUD (0.4 ppm for mobile homes)
  • Sources: Building materials, smoking, household products, and the use of un-vented, fuel-burning appliances (gas stoves or kerosene space heaters), pressed wood products made using adhesives that contain urea-formaldehyde resins
  • In developing countries: mosquito coils, solid fuel
  • During the 1970s, many homeowners had urea-formaldehyde foam insulation (UFFI) installed in the wall cavities of their homes for energy conservation
Health Effects of Formaldehyde
  • Watery eyes, burning sensations in the eyes and throat, nausea, and difficulty in breathing in some humans exposed at elevated levels (above 0.1 ppm)
  • High concentrations may trigger attacks in people with asthma
  • Some people can develop a sensitivity to formaldehyde
  • Cause cancer in animals and may cause cancer in humans

MOLDS

  • Ubiquitous to the environment
  • Thousands of known species of molds
  • Very tolerant to temperature and humidity extremes
  • When visible to the unaided eyes, molds have formed large colonies
  • Most are not pathogenic but can cause disease in immunocompromised hosts
Health Effects Associated With Molds
  • Allergy
  • Exacerbation of asthma
  • Upper respiratory tract symptoms (cough, wheezes) in normal individuals
  • Hypersensitivity pneumonitis: farmer’s lung, humidifier fever, compost lung, etc
  • Pneumonia (especially in immunocompromized hosts)
  • Sick building syndrome (?)

WHEN TO SUSPECT POOR INDOOR AIR QUALITY?

  • Perennial sinus congestion
  • Recurrent respiratory infections
  • Repeated positive respiratory cultures of environmental molds
  • Water stains/roof leaks/flooding

STRATEGIES TO IMPROVE INDOOR AIR QUALITY

  • Source control
  • Improved ventilation
  • Air cleaners (air purifiers) with HEPA filters
    • Corsi-Rosenthal box
Source Control
  • Check gas stoves, and appliances regularly
  • Change vent filters regularly (HEPA filters)
  • Be vigilant about the presence of molds
  • Decrease mold exposure
    • Avoid compost piles, cut grass, and wooded areas.
    • Control moisture
    • Dehumidifiers, air conditioners
Improved Ventilation—
  • Opening windows and doors, operating window or attic fans, when the weather permits
    • Especially important for short-term activities that can generate high levels of pollutants — painting, paint stripping, heating with kerosene heaters, cooking, or engaging in maintenance and hobby activities such as welding, soldering, or sanding.
  • Window air conditioner
Air Cleaners (Air Purifiers)
  • —Many different models
  • —Effectiveness
    • —Look for a percentage efficiency rate and cubic feet per minute
  • —Not for removing gaseous pollutants

Indoor air pollutants can cause immediate and long-term health effects, especially in susceptible individuals. Remain vigilant about changes in the indoor environment and make necessary remediation as early as possible.

Protect Indoor Air Quality in Your Home

To learn more: https://www.epa.gov/indoor-air-quality-iaq/protect-indoor-air-quality-your-home

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Transplant Talk- All About Spirometry

What is spirometry? 

  • Spirometry is a test that measures lung function 
  • It is used in both disease diagnosis and monitoring of disease progression
  • Spirometry is relevant for a number of respiratory diseases: ○ Asthma, COPD, Pulmonary Fibrosis, Cystic fibrosis, etc. 

Spirometry in a clinic: 

Traditionally, a spirometry test is performed in a healthcare clinic. During the test, patients are instructed to breathe into a tube connected to a spirometer. A patient is usually asked to perform a series of blows, and the clinician takes the best attempt and analyzes the results.

Key spirometry results 

  • FVC (forced vital capacity) – the volume of the entire blow,  typically measured in Liters 
    •  A low FVC value may be indicative of restrictive lung disease (i.e. IPF), as  patients are unable to inhale fully 
  • FEV1 (forced expiratory volume, 1 second) – the volume of  the first second of the blow, also measured in Liters ○ A low FEV1 value relative to FVC (FEV1/FVC) may be indicative of  obstructive lung disease (i.e. COPD or Asthma), characterized by  difficulty exhaling

Home spirometry – the early days 

  • Home spirometry has been in use since at least 1990 – 32 years! 
  • Early devices were quite different from the digital versions that are now available ○ Data was displayed directly on the device 
  • Most devices did not store the data 
  • None of the devices shared data with the clinical team automatically 
  • Patients were relied on to keep a paper diary 
  • FVC was not recorded on many early home spirometers

Digitization of home spirometry and  implementation in remote patient monitoring 

  • There are now a number of Bluetooth or cellular-enabled home spirometers on the  market which send data to your smartphone and/or clinicians  
  • Not all digital home spirometers have the same level of clinical validation 
  • Connected apps vary widely by features, function, and reliability

Spirometry is a key indicator of patient health post-lung transplantation 

  • Spirometry is commonly used post-lung transplant for follow-up care 
  • Typically, spirometry is done in a clinic (PFT Lab) every 3 months after a baseline is  established during the first several months following the transplant 
  • Declines in key spirometry values, particularly FEV1 (but also FVC), may indicate  complications: 
  • Rejection 
  • Bronchiolitis Obliterans Syndrome (BOS) 
  • Infection 

COVID-19 spike in digital health 

The COVID-19 pandemic was a major catalyst for digital health adoption.
Some statistics based on an EY survey of 2000 patients and 300 physicians: 

  • In April 2020, 43.5% of Medicare primary care visits were telemedicine, compared to  0.1% in February 2020 
  • Use of telephone and video at physician practices increased from 20% (before) to 80%  (during) 
  • 81% of physicians surveyed planned to accelerate introduction of new digital  technologies 

Digital health (including remote patient monitoring  [RPM]) will remain “sticky” moving forward 

  • 2021 use of telehealth declined from it’s COVID-19 peak in 2020, but has  leveled off at much higher levels than pre-pandemic
  • CMS made major changes to telehealth and remote patient monitoring  
  • reimbursement in the last few years, allowing for increased adoption 
  • A 2021 survey from MSI international found that:2
  • 80% of consumers are in favor of using RPM, 

Key reasons being: 

  • Convenience 
  • Efficiency 
  • Control over personal health 
  • Peace of mind 

Remote patient monitoring (RPM) including  home spirometry in lung transplant care 

RPM may be used as part of a follow-up care plan after a lung transplantation.

Patients are supplied with medical devices (spirometers, pulse oximeters,  weighing scales, etc.) and a connected mobile application to send  “physiologic” data to their clinical team in between routine care  appointments 

In addition to physiologic data, patient reported outcome data (i.e. surveys  about QoL, breathlessness, etc.) can be quite useful in capturing a more  complete picture of patient well being 

Care teams may review this data regularly for any alarming changes, or use  it as a reference point during telehealth visits

Benefits of remote monitoring vs routine care 

  1. Quicker identification of changes in physiologic values (i.e. FEV1) may indicate  infection or rejection, and allow patients and clinicians to intervene appropriately to  prevent or reduce the impact of these acute events 
  2. Long term monitoring of spirometry and other data allow patients and their care  teams to communicate more frequently and effectively, adjusting care plans  accordingly 
  3. Patients AND clinicians have better peace of mind, knowing that each other are  actively participating in the care process even in between apts 
  4. Fewer or less frequent in-person follow-up appointments may be needed,  allowing patients the comfort and convenience of making fewer trips, and freeing up  capacity for health systems

What are the costs and who pays for it? 

  • Home spirometers can vary widely in cost, but most  handheld devices will likely be in the $100-200 range ○ Some of these devices are available direct-to-consumer and may  interface with downloadable apps 
  • Remote patient monitoring programs are typically paid for  by healthcare systems 
  • There are reimbursement codes available for RPM that the center  would bill patients’ insurance for each month

Home spirometry has not come without challenges and controversy 

One of the earlier publications in home spirometry  (2001)concluded that: 

“Even under ideal conditions, home spirometry provides an incomplete (and therefore potentially biased) picture of long term changes in pulmonary function.” 

Sources: https://pubmed.ncbi.nlm.nih.gov/11182009/ 

More recently in 2019, a study assessing the efficacy and safety of  Pirfenidone in ILD patients was unable to draw any statistical conclusions due to variability in home spirometry data. 

This was largely due to the lack of statistical controls for removing outlier values, but nevertheless, many questioned the accuracy of home spirometry. 

Sources: https://pubmed.ncbi.nlm.nih.gov/31578169/

How can we ensure high-quality home spirometry? 

  • The technology is improving, along with understanding about  how/when/what to use home spirometry for 
  • Clinicians can analyze flow-volume curves to assess blow quality 
  • Home spirometry platforms can employ algorithms to assess quality  in real time, or to coach patients through the process 
  • Coaching can be done via video consultation with a clinician when  technique is under question 
  • 1-2 week “learning curve” for new home spirometry users
  • Keep in mind the difference between “research quality” spirometry  and the level of accuracy that is needed to track changes over time in  a clinical or patient-led application 
  • Outlier values will occur and need to be accounted for (i.e. a patient  might cough during a blow)

Sample IPF patient home vs clinic FVC, consented to share

Other possible cons of home spirometry or RPM 

  • Access to technology or internet may be limited
  • Some patients may find it burdensome to track data, or it  may increase anxiety or stress 
  • RPM and digital medicine in general cannot replace all  face-to-face visits 
  • All insurance providers may not cover RPM

How can patients find the right home spirometer and platform for them? 

  • First, ask your care team if they have a remote monitoring  program or if they recommend a particular device and platform
  • Ask patient advocacy groups for recommendations
  • Check for clinical studies validating the device and platform
    • These can often be found on company websites, or use a site like  clinicaltrials.gov to check for publications 
  • Read about the pros and cons of different devices/platforms on  company websites 

○ For example, do I plan to keep a log of other data (i.e. weight, symptoms)? Do  I want a way to track my medications? What’s the cost of the device?

Conclusions 

  • Spirometry is a key tool for long-term follow up of lung  transplant recipients 
  • Home spirometry is becoming an increasingly reliable  method of making spirometry more accessible and  convenient 
  • Remote monitoring technologies allow for home  spirometry data to be shared easily with care teams,  allowing for quicker identification of adverse events and  peace of mind for all 
  • There is still work to do to ensure home spirometry  accessibility, reliability, and affordability

Sources: 

https://www.ey.com/en_ch/health/how-covid-19-has-triggered-a-sprint-toward-smarter-health-care

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705150/#:~:text=Spirometry%20is%20used%20in%20the,regarding%20th e%20type%20of%20complication 

https://www.atsjournals.org/doi/10.1164/rccm.201505-0932ED 

https://lungtransplantfoundation.org/wp-content/uploads/2022/03/bronchiolitis-obliterans-syndrome.pdf

https://www.mayoclinic.org/tests-procedures/spirometry/about/pac-20385201

Image: https://www.chp.edu/our-services/pulmonology/patient-procedures/spirometry-testing 

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PFDD Press Release Announcement

The Lung Transplant Foundation to Host Externally-Led Patient-Focused Drug  Development Meeting to Help Educate FDA on Living with Bronchiolitis  Obliterans Syndrome (BOS)

Meeting to be Held Wed., June 22, 2022 from 10:00 a.m. – 3:00 p.m. ET in Washington DC.;  Event will be Livestreamed for Virtual Attendees

Bronchiolitis Obliterans Syndrome (BOS) is One of the Most Severe Complications After Lung  Transplantation; Currently, There are No Approved Treatment Options

An Estimated 50% of Lung Transplant Patients Develop BOS within Five Years Post-Transplant

Register

The Lung Transplant Foundation (LTF), a non-profit organization dedicated to creating a world where all lung transplant patients live long, healthy lives, announced today it will host an externally-led patient-focused drug development meeting with the U.S. Food and Drug Administration (FDA) on Wednesday, June 22, 2022, from 10:00 a.m. – 3:00 p.m. ET in Washington DC. This historic event is intended to help educate the Agency and the public about the challenges of living with Bronchiolitis Obliterans Syndrome (BOS).  

BOS, also referred to as chronic rejection, is one of the most severe complications after lung transplantation. Approximately 50 percent of lung transplant patients develop BOS within five years post-transplant, the highest rejection rate of any transplanted organ. BOS usually leads to respiratory failure and death within 2 to 4 years after diagnosis ii, underscoring the immense need for effective treatment options.  

“This is the first time that regulators and policymakers on the Hill will hear directly from patients and caregivers about what it is like to live with BOS, a disease that represents an incredibly high physical, the emotional and economic burden on patients, their caregivers, and the healthcare system,” said Amy Skiba, executive director of The Lung Transplant Foundation. “We believe that  understanding the patient journey can help the FDA make more informed decisions as they  review potential therapies for BOS and will assist pharmaceutical companies in the design of clinical trials for BOS patients.” 

The June 22 Meeting will be a Livestream and will include patient testimonials, as well as remote audience participation (register here). The meeting agenda will focus on two patient panels and audience discussion sessions on living with BOS, treatments for the disease, and potential clinical trials for BOS. LTF encourages patients and caregivers impacted by or at risk of developing BOS to take a brief survey here. The anonymous information gathered will be used to help guide and inform content for this meeting as well as future LTF activities. 

“While lung transplants give recipients a second chance of life, unfortunately, an estimated 50  percent of recipients will develop BOS five years post-transplant and be faced with no approved treatment options,”

said John Michael Reynolds, M.D., associate professor of pulmonary, allergy and critical care medicine at Duke University School Medicine.

“As clinicians, we applaud the LTF  for leading the way for transplant patients who have already faced an incredibly long and arduous journey with lung disease and eagerly welcome new therapeutic options to help change a  patient’s prognosis, should BOS occur.” 

The burden of BOS on the healthcare system is significant. Double lung transplantation costs in the U.S. are estimated to be over $1 million.iii Meanwhile, the per-patient mean direct costs in the U.S. for treating lung transplant recipients with BOS exceed $150,000 in the year following diagnosis compared to transplant recipients without BOS.iv 

LTF would like to thank our participating sponsors, Altavant Sciences, patientMpower, Zambon  USA Ltd., and Mallinckrodt Pharmaceuticals for helping to make this event possible.  

About The Lung Transplant Foundation: 

The Lung Transplant Foundation (LTF) was founded as a non-profit organization by a group of lung transplant recipients from Durham and Chapel Hill, NC. Since 2009, we have raised funds and have been an advocate for lung transplant research. We also provide education and emotional support for transplant recipients and their caregivers through our Mentorship. 

We can’t do it alone. We invite you to help us breathe life into lung transplant research by making a donation or learning more about how you can be involved.

 

Organization Contact:
Amy Skiba, Executive Director, LTF
M: +1 570-815-4243
amy@lungtransplantfoundation.org


Media Relations Contacts:
Elixir Health Public Relations
Lindsay Rocco
M: +1 862-596-1304
lrocco@elixirhealthpr.com

Jennifer Price
M: +1 917-567-7136
jprice@elixirhealthpr.com

i Weigt, et al. Semin Respir Crit Care Med. 2013;34(3):336–351.
ii Chambers DC, et al. J Heart Lung Transplant. 2018;37(10):1169–1183.
iii Milliman Research Report. 2017.
iv Sacks, NC., et al. J Heart Lung Transplant; 2020;39(4):S364-365. doi.org/10.1016/j.healun.2020.01.446.

Amy Skiba

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Make an impact, share your BOS story

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The backstory on why we need your story 

by Lung Transplant Foundation Executive Director, Amy Skiba

Eighteen months, 3 weeks and two days. That is exactly how long our organization had been urging the FDA to let us hold an Externally-Led Patient-Focused Drug Development (or EL-PFDD) meeting. And finally, on June 22, 2022, it happened and the FDA is all ears! 

Watch the Meeting

Many of you knew and were inspired by our organization’s founder, Jeff Goldstein. I was lucky enough to work with Jeff, if only for a short time. In 2009, he founded The Lung Transplant Foundation (LTF) for one reason—to help others who had undergone a lung transplant as he had—improve their chances of surviving.

When people asked why he founded the Lung Transplant Foundation, I can remember Jeff explaining,

“Since my transplant, I have lost several friends to rejection…I couldn’t wrap my brain around this rejection issue that took my friends so quickly and suddenly…and was quite likely to take me as well.”

His words were prophetic. Chronic rejection issues known as a condition called Bronchiolitis Obliterans Syndrome, or BOS (pronounced boss) ultimately took Jeff’s life in June of 2021.

In September of 2020, when the FDA first announced it would be holding Patient-Focused Drug Development Meetings, Jeff said,

“This is it! This is our chance to make our case!!” 

Jeff knew that by putting names, faces and stories to BOS, we could really start gaining ground on effective therapies to treat it. He also knew that an externally-led PFDD meeting would be our only chance to get in front of the FDA and tell the stories surrounding BOS. He immediately went to work gathering the materials we’d need for our Letter of Intent.

Even toward the end of his life, when he was ailing, Jeff was laser-focused on persuading the FDA to agree to hold this meeting about BOS. Jeff and I finished up our Letter of Intent to the FDA on June 20, 2021. He passed away two weeks later. In July, we got the green light to have the June 2022 PFDD meeting. 

You can imagine how bittersweet this happy news was for everyone who had known Jeff and worked with The Lung Transplant Foundation. The first step toward his primary goal had been accomplished but he lost his battle with chronic rejection before seeing it happen. Please help us carry on Jeff’s legacy by ensuring this pivotal meeting is well-attended.

Martha and Jeff

I’m so happy that Jeff’s wife Martha will be speaking at the June 22 meeting to remind us about Jeff’s life, his wishes, and his goal for BOS to be vanquished.

So you see, not only is this June 22 meeting a dream realized, it is also a tribute to Jeff’s life. Participating in the meeting in any way you can is an action we can take to honor all those who have been sidelined or lost to this poorly understood condition.

If you have been touched by BOS, we want to hear from you. We want the FDA staff in attendance to hear directly from patients, their families, caregivers and patient advocates.

By doing so you will help us achieve Jeff’s vision, to help create a world where all lung transplant patients can live long, healthy lives.

Thank you in advance for anything you can do to help us make the most of this meeting.

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Alice Gersh

Transplant Caregiving is a True Team Effort

John and his wife continue to collaborate, helping other patients and caregivers.

Originally published in TransplantNATION – Vol. 4, No. 2 PDF of original article here.

Written by John Gersh

On a hiking trip in the spring of 2006 my wife, Alice, found herself out of breath at the top of a steep hill and decided to skip the rest of that hike. We thought little of it at the time, but Alice has a family history of idiopathic pulmonary fibrosis (IPF), and concerns grew. Over the next eight years such incidents became more frequent and eventually she was diagnosed with the disease. There is no cure for IPF, and at the time there were few options for treatment. Alice had a fatal lung disease, one that can suddenly get much worse. In the spring of 2015, it did. Alice needed oxygen continuously, had little stamina, and her health generally declined. A transplant was the only option. She was finally listed for a lung transplant in July. I had become a full-time caregiver.

Alice hours before her life-saving lung transplant.

Caregiving entailed many things, some large enough to dominate one’s life, some small but memorable. The first included obvious things like managing oxygen deliveries and tank switching. It included some things not immediately obvious like learning how to provide the right level of emotional support. It meant being on call all the time. The small things included learning by trial, error, and correction exactly how Alice wanted her favorite breakfast of sausage and potatoes prepared, since she couldn’t do it herself. People may be demanding and grumpy as they lose their autonomy; caregivers learn that it’s not personal.

Caring for a transplant patient is a team effort. Alice and I were at the center; we faced the challenges together. We were surrounded by a wonderful group of relatives and friends: they stood in for me to give me respite; they brought meals and went shopping; they listened to my worries and Alice’s. At one point I needed outpatient surgery. The operation was minor, but it meant that I couldn’t drive or lift heavy weights for a month. What if we got “The Call” that a lung was available and we had to get to the hospital immediately? The team responded. We designated a backup crew, and they practiced all the steps involved in taking Alice to the hospital. As it turned out, the backup crew wasn’t needed, but having one was important to Alice’s care and to my own well-being. We were also supported by the transplant team at Johns Hopkins Hospital; they were a phone call away. Interacting with them was also part of caring for Alice.

By December 2015, Alice was doing very poorly. We couldn’t give her as much oxygen as she needed at home, and she was admitted to the hospital. I felt that this was it: she would come home with a new lung or not at all. On the morning of the second day there, the transplant surgeon came to her room and announced that a lung was available. (He felt that at that point she was too frail to endure the longer surgery needed to transplant both lungs.) By early the next morning the surgery was over. Two days later her oxygen cannula was removed. There was no ceremony, yet it was a milestone; there would be more challenges ahead, but I knew then that she would make it.

John and Alice reading to their granddaughter, four months after transplant. (Photo taken by Alice’s daughter, Liz Robinson)

Of course, caring for Alice didn’t stop; it just entered a new phase. Recovery was tough, but she remained determined. The care team was still needed, but gradually faded into the background. Caring itself also diminished as she could do more on her own. In August 2016, Alice threw a big party for all of the people who had supported her over the past year – the care team and more. She gave a nice speech thanking everyone and ended by acknowledging the person to whom she owed the most: her donor.

A couple of years later, we had an opportunity to give something back to the transplant community; we volunteered as mentors with the Lung Transplant Foundation, Alice for lung transplant patients, I for their caregivers. We became part of an even larger team and have found it rewarding to share our experiences and, we hope, helpful.

Caregiving teamwork stays with you. Every Saturday Alice and I team up to distribute into her pillbox the medications that keep her alive and healthy. A few months ago, Alice had some severe back pain and had to be taken to the emergency room. It resolved quickly, but in the moment, I found myself falling into what I call caregiver stance: only Alice’s situation mattered, other priorities diminished. Transport had to be arranged. People had to be notified. Medication had to be acquired. Meals had to be prepared. The team went into action, did its job, and stood down when the crisis passed. 

John GershJohn Gersh is a semi-retired engineer. He lives in Columbia, MD, with his wife, Alice. Alice had a single lung transplant in December 2015 at the Johns Hopkins Hospital in Baltimore, MD. John and Alice both like the outdoors, Alice knits, and John competes in Masters Track and Field Championships.

John and Alice Gersh are still active in the  Lung Transplant Foundation Mentorship Program six years after Alice’s lung transplant.

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Lung Transplant Foundation is joining forces with the Children’s Organ Transplant Association (COTA)

Lung Transplant Foundation is joining forces with the Children’s Organ Transplant Association (COTA) to assist lung transplant patients in need of fundraising expertise and guidance.

The Lung Transplant Foundation (LTF) receives many requests for funding support for lung transplant patients. Unfortunately, we do not provide patient funding as our mission is to support research, education, advocacy and mentorship. There are organizations based in the United States who provide various types of fundraising support once a patient has been listed for transplant at a U.S. transplant center. 

LTF is joining forces with the Children’s Organ Transplant Association (COTA) to assist lung transplant patients in need of fundraising expertise and guidance. Founded in 1986, the Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the premier national organization helping alleviate the financial burden for families who have a transplant-needy child or young adult. COTA also works with individuals of any age with single-gene disorders such as Cystic Fibrosis, Alpha-1, Polycystic Kidney Disease, or Sickle Cell Disease.

COTA will attempt to assist adult lung transplant patients diagnosed with a single-gene disorder who are referred by LTF. COTA will share information about fundraising for transplant-related expenses and will strive to identify grants and other resources through partner organizations. COTA’s services and guidance are provided at no charge to pre- or post-transplant patients or families. 

Connecting with COTA is streamlined and simple. Visit https://cota.org/get-started/ or call 800.366.2682 to learn more:

  1. Submit your information to learn how COTA can help.
  2. Receive guidance and support. COTA’s transplant fundraising professionals will work with your volunteers to provide resources, ideas and materials.
  3. Launch a COTA fundraising campaign once your lead volunteer has been identified and trained … or possibly get a referral to another organization that can provide other types of support.
  4. Work with your volunteers to personalize and update the free-of-charge website COTA provides.
  5. Start sharing your transplant journey on the provided COTA website and on social media platforms.

Facing a lung transplant as either patient or caregiver is challenging and complex. It can often feel overwhelming, especially when it comes to the financial considerations.  The Lung Transplant Foundation and COTA are here to help you navigate through this difficult journey.

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