The discovery that I had “Idiopathic Pulmonary Fibrosis” or “IPF” came rather quickly in December of 2016. My “coming out” to the public was our New Year’s Eve cruise party on the General Jackson Riverboat with our cousins and some friends.
At first, I wanted a sign that read – “I never smoked a cigarette” – so people would know I did not abuse my lungs – but passed on laying out guilt trips to others. My doctor told me about the prognosis and we began the process of getting on one of the two drugs approved to at least slow the progression of an otherwise fatal disease. I immediately started planning for the inevitable. We began the process of selling our home to downsize.
I was initially against entering a transplant program as I did not want to take the place of someone else more in need. In any case, Vanderbilt did not accept anyone for transplant over the age of 65. However, one Sunday after teaching Sunday School Dr. Priscilla Knolle, a sweet member of my class, convinced me otherwise. She pointed out that while I had IPF, I had no other co-morbidities. She told me that I should not rule out a transplant at some other healthcare facility like Duke or Johns Hopkins.
Once he knew I was open to the idea my Vanderbilt Pulmonologist, Dr. Miller, immediately ordered a work-up to see if Vanderbilt would accept me despite that fact that I was over their age limitation. They discovered I did have one possible issue that eliminated me from Vanderbilt – and that was a “slow esophagus,” which sometimes complicates recovery after transplant.
After rejection by Vanderbilt – my pulmonologist reached out to other lung transplant programs and Johns Hopkins Hospital was willing to evaluate my case. So we quickly made arrangements to be evaluated – that occurred in May of 2017 – and on May 30 we received the notice that I was accepted for lung transplant at Johns Hopkins in Baltimore. Because I have to report to the hospital within 3 hours of their finding the organs, Brenda and I will have to live temporarily in Baltimore for 4-6 months or more.
Our current plan – which seem to change daily with new information – is to re-locate in Baltimore by the first of July. The transplant coordinator at Hopkins had suggested an Air Ambulance arrangement that would allow us to stay in Franklin, TN until lungs were available, but the uncertainties around the ability of the companies to get us to Baltimore within this tight 3 hour window forced the relocation.
The bottom line is that I need to to get a double lung transplant before my current lungs quit. We leave it all in God’s hands and have seen Him be faithful time and again throughout this journey.
.
Brenda and I are so grateful for the personal support of so many people.
• The SS Class that I teach at Brentwood United Methodist Church – Acts 2:42
• Joyful Noise Sunday School Class at Brentwood United Methodist Church
• Brentwood United Methodist Church Choir
• The Mary Hartman Chapter of the Brentwood United Methodist Women
• Trevecca Heritage Men’s Chorale
• Community Health Systems – my work home of 15 years
• Brenda’s P.E.O. sisters
• Our families
• Friends from Trevecca University and the Church of the Nazarene
• The Adult Learning Center of Williamson County, TN (Formerly Wms. Co. Literary Council)
• Former business associates
• Those who we continue communication that have been a part of our lives for 70 years
We feel so blessed!
Updates (15)
August 16, 2017
Rick is in CCU on a ventilator until his body learns how to use his new lungs completely. The doctors say that there are no red flags and it is just a simple matter of time before he can be taken off the ventilator so that he can breathe on his own. In the meantime, he is receiving excellent care from Johns Hopkins and has a regular visit from a dozen doctors and surgeons each day on rounds.
August 10, 2017
UPDATE*UPDATE*UPDATE*UPDATE*UPDATE*UPDAT
Rick went into surgery this morning at 11:30 am EST for a double lung transplant. We are praying that the surgery goes smoothly and that his body accepts his two new lungs without any complications.
July 30, 2017
Hello Folks,
Latest update - "dry-run" on Thursday 7/27/17 (check out the sevens in that date). A "dry-run" is getting to the hospital getting prepped for surgery - and discovering the surgery is not going to happen!
That's the short version - read on for the longer version.
I got awakened at 1:30 AM - jolted by my cell-phone and told to be at the hospital at 6:00 AM that morning. Up at 4:00 AM - shower-shave-best under-ware "Under Armour" - Mom always said were clean under-ware you might have to go to the hospital. Grab the "go-bag" and make it to the hospital in good time.
We make our way thru the empty lobby to the 5th floor - Cardio-Vascular Surgery Floor of Sheik Zayad Tower at Johns Hopkins Hospital. This delightful 5 foot tall spit-fire lady who said she had been doing what she loved for 43 years - greeting people and getting them to the right location and making sure the computer agreed with reality!
She deliver us to nurse Anne Marie who gave the order "strip and put on this lovely green breezeway gown." Started all the vital signs - blood pressure 157/77 (never been that high - must be the stress) and hooked me up to the heart monitor - plugged in my O2 and told me to relax. That heart monitor is twelve leads (note to self - shave the chest before the next run - it will be less painful when you rip them off). Just be patient she said - the waiting starts now. 2 hours 4 hours 6 hours. This is getting to long - so after waiting - rescheduled for Friday 7:30 - then 10:30 - the lungs arrive - they are evaluated by the surgery team and did not pass inspection. Surgery is cancelled - go home and wish for a better result next time!
Brenda and I are confident this will all work out. If we get anxious we are reminded of scripture about "all things work together" - "this too shall pass" - "the Lord will provide"
We are truly blessed,
Rick and Brenda Egnor
July 10, 2017
I would like to explain the HelpHopeLove Campaign to help Rick and Brenda, which has a goal of $50,000 to help cover expenses not covered by his medical insurance. His double lung transplant will cost roughly $1 million, all but $50,000 of which is covered.
Since no one knows when lungs will become available, this amount could stretch upward as time passes. We are rushing to their aid to help them avoid what could become catastrophic health care costs, defined as out-of-pocket spending for health care that exceeds a certain proportion of a household's income with the consequence that households suffer the burden of disease.
Unlike some other medical issues, the need for a double lung transplant puts Rick and Brenda in limbo for as long as it takes for the right organs to become available. As you know, they are living in a Homewood Suites in Baltimore waiting for two compatible lungs and for his turn at the top of the list. The cost of living on stand-by in Baltimore (rent, food, etc.) is roughly $2,000 a week. Keep in mind that their overhead expenses in Franklin are not considered in this campaign, but are still very much a reality for them.
The campaign is strictly focused on the cost of their being near Johns Hopkins while they wait for the surgery, as well as for Brenda to be nearby during Rick's three month post-transplant hospital stay. To be clear, living at home in Franklin was not an option as they could not possibly get to Baltimore within the three-hour window required for them to report to the hospital before the organs would be considered not viable. His waiting time is subject to multiple variables: blood type (some are rarer than others); tissue type; height and weight; size of donated organ; medical urgency; time on the waiting list; and other factors. I am sorry to be so blunt, but this is a matter of life and death. Rick needs new lungs soon or he will die. In order for a transplant to be possible, he needs to be near Johns Hopkins Medical Center and ready to go with three hours’ notice. Vanderbilt would not do the transplant and referred him to Johns Hopkins.
The goal is $50,000 which will cover roughly six months of these costs plus the 5% fee that Help Hope Live charges to be the IRS accredited agency to receive tax deductible donations and who are held accountable for the appropriate distribution of those funds via detailed expense reports that Rick and Brenda must submit. There are strict guidelines as to what is and what is not reimbursable. For more on this, go to the www.helphopelive.org and read more about their fiduciary responsibilities. To date, we are at 25% of goal with over $13,000 raised. The dollar amount on the website thermometer will always be net of the 5% fee. For instance, the thermometer on Rick's page (https://helphopelive.org/ campaign/12969) shows $12,205 as the total available to Rick and Brenda, but we know that over $13,000 has been raised. This is a great start! We need to raise another $37,000 to cover the full six months. Brenda and Rick arrived in Baltimore on Sunday, June 11th, and will have been there a full four weeks on Sunday, July 9th.
Please hit the "Donate Now" button to the left and make a gift. If you prefer to make a gift by mail, the instructions are:
Payable to:
Help Hope Live
Memo line:
In Honor of Rick Egnor
Mail to:
Help Hope Live
Two Radnor Corporate Center
100 Matsonford Road
Suite 100
Radnor, PA 19087
Encouraging cards and prayers have been a great source of comfort to Rick and Brenda. You can send your best wishes to them at Homewood Suites BWI Airport, 1181 Winterson Road, Linthicum, MD, 21090. Telephone 410-684-6100.
Please feel free to call me if you have any questions or would like more detail. I am honored to help in any way I am able. My phone number is 646-483-9797 and my email address is ericeitel@gmail.com. You can find my biography on LinkedIn under Eric V. Eitel in Brentwood, TN. I am the C.E.O. of a software company in Maryland Farms.
Thank you,
Eric V. Eitel
July 9, 2017
Hello folks:
Another week has flown by - had a new experience this Sunday - taught the Acts 2:42 SS Class at BUMC from my exile in Baltimore, MD. We are working out the kinks of getting video - voice - and presentation software - all transmitting over limited bandwidth. I am open to suggestions on the best methods.
The staff here at our abode - comment about the cards - 4-5 each day - unbelievable support from our friends back home.
Thank you so much! Those words seem so small an expression of what it means to be on the receiving end of blessings.
God Bless you
Rick and Brenda Egnor
July 3, 2017
News from Baltimore - while we wait.
Had my first session of pulmonary prehab today - I call it prehab because it is primarily to gain strength before surgery so I have a good chance of a quick recovery after transplant. After surgery I will call it rehab like everyone else. An hour of treadmill, hand bicycle, stretching and meeting the Medical Director - Dr. Chen.
Lunched at Cracker Barrel - and this afternoon working on method to teach my SS Class remotely. Played with Google+ and Hangouts - may be the simplest method. Received so many cards - it is really unbelievable - how many cards we have received over 70 cards - it is amazing how much the cards touch the old tear generator!
Folks this is just a "bump in the road" compared to what many of my friends and family members are facing - but I do appreciate the sentiment expressed to me!
Love and blessings
Rick and Brenda
June 29, 2017
Hello friends,
A great big THANK YOU to all who have help jump start this adventure. Brenda and I are certainly overwhelmed by everyone's concern and contributions. It is difficult sometimes to accept the kindness of others - but God has been teaching me some "humility" lessons.
Ladies keep trying to let me go thru doors first - and my mother taught me better! So we do this little dance - and I insist my arms aren't broke - just my lungs are shot!
If you have read this far - you might think of someone you can send a link to this page - and we will be grateful.
God bless you all
Rick and Brenda
June 25, 2017
Just back from Church at Linthicum Heights United Methodist Church - great bunch of friendly people. Sang from the hymnal and enjoyed the friendliness of these folk. Everyone comes up to greet us - I am learning some new names - God's love shows through the faces of these fine people. Talked with my SS Class back home in Tennessee - nothing like hearing familiar voices. Jen from Help Hope Live is coming to visit us this coming Tuesday - and we are looking forward to that. Anxious for surgery to be scheduled - would prefer weeks rather than months.
Grateful for all the cards, prayers and support
Much love and blessings
Rick and Brenda
June 21, 2017
Saw the pulmonologist yesterday afternoon - another PFT test and the usual "vampire" routine - just 10 tubes this time. The nurse coordinator was encouraging about our position on the list - and said it might not be too long a wait. All is well in Baltimore - weather has been nice. It is amazing to be on the receiving end of blessings from the body of Christ!
Brenda and I send our love to all!
June 19, 2017
Checking in after a wonderful Sunday. Went to 8:00 AM service at local Methodist Church - very caring and loving people. One lady invited us to breakfast for the next day - she happened to be named Brenda - so I had two Brenda's - one for each arm. God's people seem to know just how to make others feel welcome!
June 19, 2017
Listed below is a Video from Eric Eitel , Rick and Brenda's Funding Advocate.
Please watch the video and do what God
would have you do.
Thanks
June 17, 2017
Hi folks - checking in after one week in Baltimore. We have learned the essentials - drugstore, grocery, church locations. The only Cracker Barrel within miles is just up the street.
Cards from our friends are decorating our tables - we are so blessed to have people in our lives who think about us.
The receiving end of Gods goodness expressed through others is truly heartening! I miss seeing your faces.
I am addicted to FaceBook just to get a glimpse of peoples smiles. I admire those who can take great selfies. I have a cousin to posts a BIG SMILE that really cheers the heart. (She is a "niece-in-law" ) - I just call everyone related to me cousins.
Thanks so much for your support - Brenda and I are truly blessed!
June 13, 2017
I got dressed this morning in a nice shirt to take a picture in my new office! Check it out!
June 12, 2017
We are now located in Baltimore - HomeWood Suites BWI - Now working remotely.
June 6, 2017
Family and friends of Rick Egnor are raising money to pay for uninsured medical expenses associated with transplantation.
Rick has chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Photo Galleries (3)
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Guestbook
November 3, 2017
Rick,
Kathleen and I are praying for your speedy recovery. Even though we can't be there with you, our hearts certainly are. God Bless
Chris & Kathleen King
August 10, 2017
You are in my thoughts and prayers Rick- I see you were taken to surgery today, I am looking forward to your recovery! God bless!
Lisa Johnson
August 2, 2017
Rick and Brenda, Steve, Tyler and I are thinking of you often and praying that you are able to have a quick recovery and get back home to Franklin asap! We love you guys and please know we are here for you if you need anything at all! Please let us know because we would love to help out any way we can. I know God is with you and he will get you through this.
Love and hugs to you both,
Janice and Steve Hulen
July 31, 2017
Now that you have had a "dress rehearsal" we are praying for your premier debut performance, under the direction of our amazing God. He has directed your life to this point and has his eyes on you for the lead role. We are in the front row, cheering you on with our prayers!!
Susie and Alex Bonner
July 24, 2017
Mr. Egnor,
I'm sorry you're going through this. I'm friends with Brad and felt compelled to tell you what an amazing impact you've had on my life. When I felt helpless after Hurricane Katrina, you gifted me a flight to Providence. I think about your kind gesture often as the subject of "post-Katrina" is a recurring conversation as you can imagine. Your family helped me through a very dark time and I'll always be grateful. You'll be in my thoughts & prayers as you fight!
Thank you for being such a special person!
April Boudreaux
April Boudreaux
July 14, 2017
Rick, I wish you the best, stay positive, get healthy and come back home.
Sibyl White
July 14, 2017
Rick, you know how much you mean to me. You and Brenda are very special people and my heart goes out to you both. We are all here for you and will do anything we can to help. Many prayers going up for you and I am looking forward to our next adventure when you return. Heart of gold...
Briana (aka Wonder Woman)
July 14, 2017
Rick, you and your family are in my prayers. God does work miracles...it's just a matter of time before you get that call! We miss you here at CHS.
Dana Caldwell
July 13, 2017
You are in my thoughts and prayers, Rick!!!
Stay Strong and we will see you soon!!
Sheri Conn
July 13, 2017
Hang in there Rick. Our entire team is behind you back at home. We are all praying for your speedy recovery.
Manish
July 13, 2017
You are in our thoughts and prayers, Rick!
Danny Callis
July 11, 2017
Rick and Brenda, Jim and I were learning about the stress of uncovered medical expenses, so I understand where you are now. I pray that the transplant can happen soon and that you can stay healthy until then.
Jan Knight
June 22, 2017
Rick and Brenda,
We continue to lift you both up in our prayers daily. Life has certainly given you some sour lemons but we are trusting God to make of it some sweet lemonade! Trusting Him to do what only He can do.
Wayne and Becky Leitner
June 21, 2017
Hi Rick:
You are the best baritone to ever need a new set of lungs. My prayers are with you from this day forward. God is bigger than we can think, imagine or dream. He and many of His children are with your through this temporary setback.
You are greatly loved and appreciated.
Michael Arbuckle
June 15, 2017
Hi Rick and Brenda, you guys left so quickly we didn't get to say goodbye. You'll be in our prayers and we hope you'll come back to the hood soon. Keep us posted and don't hesitate to let us know if we can do anything for you and the house while your gone.
Roger and Melanie Conner
June 14, 2017
Brenda and Rick, my prayers are with you each day.
Connie Boebel
June 13, 2017
We serve a mighty and faithful God. Brenda, you have been in my life since the 4th grade. Dick and I will be praying for you both.
Dick and Kathy Solomon
June 13, 2017
Hello Rick, we worked together when CHS had all the contractors, Dawn Coleman. My husband is battling a pulmonary issue right and i can empathize with you and your family! sending healing prayers and prayers of strength to you and your wife at this time! God Bless!
Dawn Coleman, Chicago
June 13, 2017
Leave it to you, sir, to be set up to start working within 24 hours of reaching Baltimore! Sending prayers and lots of love to you and Brenda.
Dana Hardy
June 6, 2017
Much love to you both. There are few finer men I know than Rick Egnor and I am honored to stand with you and your friends and loved ones to support you in this time of urgent and critical need.
Eric Eitel
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