You have a new set of lungs! What should you expect next?

Cystic Fibrosis Podcast 183:
The Path Forward with Cystic Fibrosis
By Jerry Cahill
In the latest edition of The Path Forward with Cystic Fibrosis, Dr. Arcasoy from Columbia University Medical Center is back to explain what happens after a patient has a double lung transplant. He discusses pain management and the post-transplant care team in detail.
Here’s what to expect immediately pre and post-surgery:
  • Post-surgical care including pain management
  • Medical care that includes antibiotics, antirejection medication, and anti-infection medication
  • Psycho-social recovery assistance
Dr. Arcasoy also explains who your post-transplant care team is and what they do… it’s a lot, so here’s a cheat sheet:
WHO: Medical Transplant Pulmonologist and the Coordinator
WHAT:
Patients will meet with their Post-transplant team once a week for three months, then every 3-4 weeks for a year. At every meeting, the following occurs:
  • Chest x-ray
  • Lab work
  • Pulmonary function test
  • Physical exam
  • Conversation to review medications and overall health & wellness
  • Follow up lab review and medication changes
The schedule for bronchoscopies vary depending on the center, and additional testing can be added at any time deemed necessary.
Remember – every patient’s experience is completely unique! Do not get discouraged; and work with your care team to prepare both mentally and physically for the bumps along the way.

This video podcast was made possible through an unrestricted educational grant from Columbia University Medical Center and the Lung Transplant Project.

SIX Ways to PAY IT FORWARD to CF ROUNDTABLE!

By Jeanie Hanley, President

Greetings CF Roundtable Subscriber!

May is CF Awareness month. What better way to “Pay It Forward” than by supporting CF Roundtable which has been vital to the CF community! Please consider making a tax-deductible donation today.

This is YOUR CF Roundtable and because of your generosity, YOU have made it possible for nearly 30 years. 100% of your donation goes into the newsletter and many outreach programs. All work is done by volunteers with CF like Andrea, our Executive Editor, whose inspirational words regarding her 18 years of transplant are below:

Eighteen Years of Life Post-Transplant

By Andrea Eisenman, Executive Editor of CF Roundtable

Reflecting back on my life for the last 18 years post-transplant, I am amazed I have lived so long. Way longer than I expected, considering the 50 percent median survival of 5 years after a bilateral lung transplant. I am grateful for this time in which I was able to get married, go back to school for various interests like film and cooking, and care for my mom in her later years, share my life with people I care about and never in recent memory felt this good.

While I have enjoyed a good quality of life, it came with a price of total compliance almost to the point of being neurotic at times (my doctors probably get sick of my calls and emails), a daily exercise regimen and lots of rest. But I found that if I did things I enjoyed like tennis, pickle ball or swimming, it helped get the exercise for that day done while it was fun and social.

I have been extremely fortunate as not only do I have this longevity with transplant and I feel pretty well. Aside from the last 12 months, I have had the ability to travel and do most things my peers do. While I had some setbacks recently, I am starting to feel better. I keep a positive outlook and do what is needed. I can see how precious this gift of life is and I hope that when my time comes to be a donor, the person who gets my organs enjoys them as much as I enjoyed these lungs.

DONATE LIFE!

Please consider Paying It Forward in these six ways:

 

  • Unrestricted Gifts – your contribution will go to the program that needs it most.
  • Milestone Celebration: for a transplant anniversary, birth of a child, wedding, or a birthday. There is no greater reward than celebrating YOU and YOUR accomplishments.
  • Tribute Gifts – donate in honor or in memory of someone.  
  • USACFA Endowment Fund – consider contributing which will get CF Roundtable closer to be self-sustaining forever! Please contact us if you are able to contribute.
  • Matching Gifts – if your employer has this program, then let us know!
  • Bequest – A simple and easy way to remember CF Roundtable in your estate planning.  To establish a bequest, please contact us.

 

To make a donation, click here DONATE NOW!

Or MAIL a check USACFA

(made out to USACFA) to:

PO Box 1618

Gresham, OR 97030

Contact us at cfroundtable@usacfa.org for any further assistance.

USACFA proudly publishes CF Roundtable and all its associated programs; USACFA is a 501(c)(3) nonprofit organization. All donations are tax-deductible.

Thank you!

Freedom!

Guest post by: Kathy Russell

Today was a terrific day! We have just experienced a three-day series of high temperatures in the 80s. In the middle of summer that would be quite normal, but getting that kind of weather in April is extremely rare in my part of Oregon. I made the most of those days.

In our front yard, we have a very old and very large black walnut tree. There is a brick planter built around the base of the tree and there are various plants, including several sword ferns, growing in it. The sword ferns are beautiful if they are properly groomed. Each year, when the weather permits, I get out and cut away all of the old fronds to make room for new growth.

I didn’t get to do that last year because of my health. I just didn’t have the energy to do the bending and twisting that the task entails. Also, since I am on continuous oxygen, it makes getting out to the tree a bit problematic. Dragging my portable oxygen concentrator (POC) while I am pruning the ferns is a bit of a pain. I bend over and cut some old fronds, then I have to stand up and drag the POC to my next position. It makes it more of a chore and a lot less fun than it used to be before I was on oxygen.

Yesterday I worked on a couple of ferns that I could reach with the length of hose that is on my big concentrator. That was fairly workable, but I couldn’t go beyond the range of my hose. Also, I couldn’t reach two of the ferns. After about an hour I was getting too hot and decided to stop working on a large fern that was at the end of my tether.

Today, my husband took my large concentrator outside and plugged it into an outdoor outlet. With the 75 feet of hose that I have on it, I had a lot of freedom to move around. I was able to finish the fern that I left yesterday and finish the final two. I didn’t have to worry about running out of hose length and I felt so unencumbered. It was so great to be able to move around like a normal person. I absolutely loved that feeling of freedom. It was almost like not even being on oxygen.

My oxygen saturation stayed in a very good range and I got a couple of hours of fresh air. I was mostly in shade so I didn’t have to worry about being in the sun too long. Having the ability to move around and not have to drag a POC was a real gift as far as I am concerned.

CFF announces recipients of first annual impact grants

Cystic Fibrosis Foundation Announces Recipients of First Annual Impact Grants to Programs That Serve People With CF and Their Families

The Cystic Fibrosis Foundation has announced the recipients of its first annual Impact Grants.

The program provides funding to support people with cystic fibrosis who are creating unique projects in their communities that serve people with the disease and their families. Cystic fibrosis is a rare, genetic disease that causes chronic lung infections and premature death.

The 2016 grants award $10,000 each to seven diverse programs across the country — from one that teaches singing as an outlet for creativity and wellness, to others that provide personal fitness and health training to individuals with cystic fibrosis. Recipients were chosen by the CF Adult Advisory Council, an external panel comprised entirely of adults with the cystic fibrosis, in partnership with the CF Foundation.

“People with CF have the greatest insights about how to live with this disease,” said Drucy Borowitz, M.D., vice president of community partnerships at the CF Foundation. “We are honored to support these organizations that harness the power of the CF community to help people with this disease and their families live better lives every day.”

Read the blog here.

The grant award recipients include:
The Cystic Fibrosis Lifestyle Foundation (CFLF), a nonprofit organization that helps people with CF maintain a healthy lifestyle. The CFLF provides assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical wellbeing.

The United States Adult CF Association (USACFA), a nonprofit corporation run by adults with CF, offers the community an opportunity to exchange medical and nonmedical information through its quarterly national newsletter, CF Roundtable.

Project CF Spouse is a nonprofit organization dedicated to supporting spouses of people with CF. The grant will be used to grow the 150-person group, expand educational resources and facilitate connections between other spouses as they navigate their own CF journeys.

The sINgSPIRE program, through Breathe Bravely, will provide free, private voice lessons with a qualified voice instructor who will work on strengthening participants’ respiratory systems and improving self-awareness and confidence.

Program NuYou, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a workout plan that is tailored to individual participant’s needs.

Miles for Cystic Fibrosis supports Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath.

Continuing Education for Caregiver/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease.

Continue reading CFF announces recipients of first annual impact grants

OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

This podcast will finish the discussion started last week about a person with CF living alongside roommates in college. You will again meet David O’Kane, Carmen Gatta, Vince Love and Matt Flynn, and hear us talk about the support Continue reading OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

Having CF is the Best Thing that Ever Happened to Me

Having CF is difficult.  There is no denying that.  Some days it is hell, other days it is fairly easy given the circumstances.  But with all the bad that has happened, having CF is the best thing that ever happened to me.

Continue reading Having CF is the Best Thing that Ever Happened to Me

15 Reasons I Never Hide My Cystic Fibrosis––Gunnar Esiason

Cystic fibrosis is a major emotional burden; there is no disputing that. I think sometimes what comes of the emotional stress is a hesitancy for people to really open up about CF. Too often do I talk Continue reading 15 Reasons I Never Hide My Cystic Fibrosis––Gunnar Esiason