Second Chance at Life

Here is a picture from yesterday when I played golf in a tournament called “The Mulligan”, which benefits Team Alleghenies for the US Transplant Games.  If you are a golfer, you know a mulligan is the chance to take a shot over. Well when you realize organ transplant patients are a mulligan of sorts, you understand the great name for this event.  What better way for me to enjoy a mulligan, at The Mulligan, then to play with my two oldest sons, Keith, Kevin and also my grandson, Koby at the event.  It was a great day!

Keep The Faith and enjoy your second chances, as when it comes to incurable diseases like PF, the only Mulligan comes from Organ Donors.  Play it wisely.

NYC PF Awareness 5K Walk/Run

Yesterday I attended this event, like I did three years ago when my book, Partners 4 Life was just released.  This year marked the 10th anniversary of this event hosted by Terence Hale and held in Central Park, in the heart of NYC.  I had a special reason to attend this year, as Travis Murphy, the oldest son of my Donor now moved his family from DC, and lives in Harlem just north of Central Park.  He attended along with his wife Mandy, and their two wonderful children Ingrid and Walter, all I had met before.  A special bonus was his brother Tane, who came all the way from Wichita to join us for this event.  (Oh and also attend a Yankee game, which happens to be his favorite baseball team, and a real surprise, be a special guest with his big brother at the NBA draft held Thursday!)

Travis now works for the NBA and is involved in all kinds of cool things like the work the NBA is doing around the world developing players and their social and other skills.  I framed a jersey that Travis gave me and it generated a $1000 for PF research, through the Pulmonary Fibrosis Foundation.  That was just part of the incredible money raised by this event, which totaled well over $100,000.  I had a Partners 4 Life, team supported by many and we exceeded our targeted goal, and I reached out to meet many attendees.

Two old friends were there too and that was Dr. Naftali Kaminski, and Tricia Black (much younger and prettier too), both formerly of the Simmons Center at UPMC. It was great seeing them, and having the chance to introduce my Donor family to them and many in attendance.  Neither had ever had that experience before and for lungs it is quite unique, and I am blessed in so many ways.  That relationship is explained in the book.

We all did the walk including Travis and Mandy’s two very well behaved dogs, “Loretta” and “Barbara”.  Because of Travis’s and Mandy’s work at the State Dept, their dogs have a pedigree that is International in scope, having come from Ecuador, lived in Corte d’Ivoire, Washington, DC and now think they and the kids have the greatest playground: Central Park.  Very cool!

Tane and I had not met before that day, and it was a great chance to chat and reminisce about their dear Mother, Judy, also from Kansas and my Donor 8 years ago in April. Travis wrote a chapter about her passions for, life, family, sports and nursing, and ironically organ donation and transplants.  A cerebral hemorrhage cut her life short at 51, but her lungs gave me a second chance at life and her passion for transplants lives on in me.  I am sure it showed yesterday.

What started out as a very wet rainy day, stopped and cleared and the day was beautiful all around like the smiles on the Murphys.

Hey Jude!  Thanks.  Keep The Faith.

P4L Lung Transplant RN Education Fund

This picture is my presenting of the first Partners 4 Life check for this fund from me and in Honor of my Donor, Judy Murphy.  Judy was a passionate nurse and at 44 earned her Master’s Degree in Nursing, so she could teach other nurses and share her passion. Ironically, one of the focus points she taught them was the value of organ donation and transplants.  A cerebral hemorrhage cut her life short at the age of 51.  I learned this through her oldest son, Travis J. Murphy who wrote a chapter in my book about her life, passions and pleasures.

I feel sure she would like all of these nursing people from the UPMC Cardio-Thoracic Coordinator group, headed by Shelley Zomak, and Colleen Yost looking over my shoulder and two other of this groups members in Kim Myers and Larry Boggs.  They are all so important to the transplant recipient and monitor the test results, med issues and other physical and mental well being, and as a patient one needs to listen and follow their support.  As a patient you owe this to the most deserving of all partners, your Donor.

The money donated will help transplant RNs with their continuing education needs, and that would make my Donor, very proud according to her son, Travis.  This first check came mostly from sales at my custom picture frame shop, with a month long promotion in the month April which is National Donate Life month. I also donate all the profits from the sales of my book to Honor my Donor, as I have since the book was released 3 years ago.  I have other sources of related medical income revenue, to also help in future donations to this worthwhile cause for transplant nurses, which they certainly earn every time they extend their nursing skills for patients.  Keep The Faith.

CORE Special Place / Special People 2017

This is the 5th year I have attended this event at CORE, the Organ Procurement Organization based in the Pittsburgh area.  Donor families are honored whose loved one became an organ donor in the previous year.  It is always an emotional event for all involved.  At the end of the event, everyone gets a balloon for the balloon release as you see here.  Many have messages that are special to their loss and all are from the heart.

Two of the speakers were Donor Moms and were especially sensitive for their words and their courage.  One of them has a nursing background, and spoke of the value of nurses in the transplant process, from recovery to transplant.  I could not agree more and this year will be making a contribution to the continuing education of transplant nurses, which my Donor would certainly be pleased to know.  I think she may have gotten that message on my purple balloon I sent heavenward today.  Hey Jude, Keep The Faith.

One of My Favorite Days of The Year

For the last 6 years, I have acknowledged the nurses at UPMC in the CTICU and also 9D wing where 8 years ago on 4/21/09, I received a double lung transplant.  Despite my being a horrible patient at times, I sincerely appreciated the nurses that helped me get back to my life.  I was in CTICU 6 of the 9 weeks I was in the hospital, so to help show appreciation for all of them, every Good Friday, I take a big solid Sarris Chocolate Easter Basket to the nurse’s station as close to the 7 AM shift change I can do.  I give them the basket, tell them my brief story, give them a copy of my book, and this year carried a sign that says “I am grateful for my transplant because………

• OF NURSES (Especially my Donor).

I then tell them in the book, they can read her story in Chapter 7 as written by her oldest son, Travis.  Since this is Organ Donor month it makes the story even more fitting, and I thank them all, for their passion for nursing, as was the case of my Donor, Judy Murphy.

Making New Friends on Friday The 13th

Last Friday I made some new medical friends the hard way!  Starting in the ER and then later in the 10D wing at UPMC Presby.  I made several new friends in ER too,  but was greeted for my two night stay at 10D, by Rachel.  It was 1 AM and she said I looked familiar, which made me say, hmmmmm?  Turns out she is a Duquesne Nursing School grad and I spoke to the group in October 2013 and she remembered, my hat, I guess.  My other nurse was Brendan and he was great too, as was Dr. De Luna shown in the picture, she is smiling as I am as after two nights, I was released a lucky guy, again.  New meds like Tamiflu and Cipro are helping.

I started last week feeling pretty good, then my daily morning vitals (which I check) starting going the wrong way.  Temp going up and O2 level dropping, and then Thursday sound the +100 alarm at 101.4.  That is the highest since my time in the hospital in 2009 after my transplant.  Thanks to my coordinator, Shelley suggesting a visit to the ER, and sure enough, I had the flu, Influenza A.  I knew this drill well, as it happens, but never that high of a temp before to me.  It also showed some pneumonia developing in my left lung, but after some IVs and other meds, I was released Saturday and home for the weekend.

Continue the meds for two weeks and some doctor follow-up but I feel a whole lot better and was told if I waited another day, it could have been into ICU for a lot longer stay.  Yes, I got a flu shot, but this flu outbreak and strain in hitting western PA right now, and since I am in the public a lot, could have picked it up anywhere.  My message to all is be careful and Keep The Faith, and never hesitate to talk to your coordinators.

This was my first time back to the hospital for a stay since my double lung transplant in April 2009.

Thanksgiving Post

Thanksgiving has always been a special time for me and many others, and hope we can reflect on the thanks we have in our lives.  Not everything is the way one may like it to be, but yet I have seen my way to be thankful for every day, especially since my double lung transplant in April of 2009 due to Pulmonary Fibrosis.  Being aware of what we have to be grateful for, is foremost for me,  and as a transplant recipient this puts a different perspective on thanks for most recipients. The gratitude is humbling.  It is an attitude that starts with Keeping The Faith.

My thanks has always started with knowing what I had to deal with, as opposed to fears of the unknown.  A year ago, I was told I was having chronic lung rejection, and the course of action was exercise, to help lose a few pounds and start taking cellcept again.  In a month my PFTs were back on track, and my most recent PFTs are the best ever!  Thanks to my pulmo support team!  They are the best, and especially Shelley Zomak, Tammy Tokarczyk and Dr. Morrell.  My last visit in October, gave me news I have never heard before.  Come back in six months!  Blessed.

After 7 1/2 years, the immunosuppressant drugs take a toll on the body and specifically the kidneys and last January I was told I had chronic kidney disease.  CKD is not reversible, but I have controlled it over the last year, by some blood pressure meds, a low sodium diet and continued exercise.  My CKD has not gotten any worse due to my approach and following the doctor’s advice.  My weight is  now 10# over what I weighed when I graduated from Bethany College, 50 years ago.  Check out the picture in my old jersey!  What a blessing to celebrate the 50th anniversary of our undefeated football team with my teammates and Coach Bob Goin.

My health allows me to keep making my customers picture frames, spread knowledge and awareness of PF, and gratitude for Organ Donors.  Thanks Judy Murphy, my Donor and the support of her oldest son, Travis to understand more of her passion. This is a big part of why I try and continue the memory of her life, as I relate Organ Donor value every single day, but especially at Thanksgiving.

Keep The Faith for a great holiday time for all and reflect on gratitude.