IPF Support Group UPMC / Hamot

My dear friend, Barb Graziano, who lives in Warren, PA saw an ad in the Erie paper about this support group in Erie and passed it on to me.  I contacted Josh Henry, standing to my right, is the Respiratory Care Practitioner at this location, and helps these patients, and I contacted him about coming to speak to the group and tell my story, about my IPF journey.  Certainly UPMC / Simmons Center was part of my talk, along with the importance of my Donor.  I will celebrate my 10th anniversary of my double lung transplant this April.  I always welcome the chance to talk about the importance of finding the best partners for dealing with the challenges of IPF.  I hope I helped some today.  Keep The Faith.

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Donation To Cardio Thoracic Nurses

Many of you have known that my organ Donor, was a nurse, who at 44 got her Masters Degree to teach other nurses, which she did.  A cerebral hemorrhage cut her life short at 51, and her lungs found their way to me in Pittsburgh, all the way from the middle of Kansas.  The passion she had for nursing came with her lungs, for nurses, like Kathy Lindell, and Shelley Zomak and so many others, like the ones in this picture who work at UPMC.  Ironically at her funeral, her students talked about her passion for organ donation and transplants and she no doubt instilled her passion into many of her students.

I presented these nurses a check today for the Judy Murphy Fund, which is used for the continuing education of cardio thoracic nurses like these people.  It is my way of honoring My Gift of Life, that I treasure and do everything I can to keep them healthy. The money comes from sales of my book, Partners 4 Life and P. Buckley Moss artwork titled “A Gift of Life”, and also some frame repairs in my frame shop, or just some people who give me donations at my shop.

Those in the picture are from left to right, Nancy Pepke, Sally Smales, Darlene Fink, That “Hat Guy”, Carol O’Neil and Larry Boggs.  I so blessed to have such great Partners 4 Life, and my greatest Partner, was a nurse named Judy Murphy.  Hey Jude!  Thanks.

Busy Summer / 5th US Transplant Games

I have not posted much on my blog this summer since the 4th of July.  Busy year and took two weeks in early August to close my frame shop, and go to Salt Lake City for the Games, which were my 5th US Games, since my double lung transplant 9 1/2 years ago. The 4,000′ altitude and smoke from the western fires were a little challenging, but what Games they were!  So many attendees and a great set-up for the event.  My golf was not good, but had enough energy to finish and made more friends, played with some old ones too.  The greatest event was the Donor Tribute and ironically Joy Starzl attended the Games, who was the wife of Thomas Starzl, considered as the Father of Transplantation Surgery.  His book, “The Puzzle People” was featured at the Games, which were opened with Joy lighting the Torch for the Games.  Here she is with two double lung recipients, myself and Bill Cornell.  This was certainly one of the many highlights of the Games and I’ll post another post soon about the Utah National Parks.

Firecracker Hot 4th of July

For my first time, I joined CORE volunteers to march in the great 4th of July parade in Canonsburg, PA.  Here we are coming up the main drag, called Pike Street, where I walked the whole parade route, or in my case 6,000 Fit Bit steps in one hour.  Passing out candy along the way, and so many little ones with red, white and blue, certainly brought impetus to my pace.  The temp was in the low 90s and heat index over 100 and the hottest day of the summer.  Well it was the 4th of July!

Thankful for my Donor and those of my fellow volunteers to stand up to the challenge.

Keeping The Faith, was easy that day, thanks to Organ Donors and our great Partners 4 Life.

I Love To Share The Story

I was asked by the Friends of the Library, in Washington, PA to talk about my book, Partners 4 Life, which I always gladly do.  There was a nice turn out and maybe 4-5 nurses in the group.  That is the best for me, as I am so appreciative of nurses for the job they do for transplant patients especially.  Many of you know that I contribute profits from my book to the continuing education of cardio thoracic nurses at UPMC (University of Pittsburgh Medical Center), where I received my double lung in 2009.

This library group was certainly interested in my book, and I donated a copy of Partners 4 Life, to their library, and a number of people also bought a copy for their own reading.  The kindness of the group, was expressed in a nice thank you note, where they also send me some pictures of my presentation.  The generous group also donated a check for my cause, and all it and the book sales will be passed on to the nurses I mentioned above.

My passion for nurses comes naturally, as my Donor was a nurse, who ironically was very passionate about organ donation and transplants.  No one wanted her to become a Donor at the age of 51, but her passion continues in her gift of life to me, as I tell her story virtually every day anyone stops in the old frame shop I run in a town just south of Pittsburgh.  All contributions to UPMC are made in honor of my Donor, Judy Murphy.

The Call Came Tonight / 9 Years Ago

Thanks to the partners that prepared me, and my family that supported me, when I got the call that a suitable organ donor came available,  I was asked if I was willing to accept the offer.  Suffering from Pulmonary Fibrosis for a couple of years, but only aware of the terminal outlook for this disease for about a year, and getting worse fast, I was ready.  Besides I had a good friend and great mentor who had not one, but two lung transplants, so I was not afraid of the fear of facing a surgeon.  I would say I was very much at peace, regardless of the outcome.

I drove myself the 45 minutes to the hospital that night and was calm, not running any red lights or in a hurry, as if I was headed to another meeting, like so many I attended in nearly 5 decades of sales meetings and appointments.  The lungs were acceptable to the surgeon, and so was I, and that is where I was joined with my greatest Partner for my second chance at life, My Organ Donor.

My journey was not easy, but my large family kept me in their prayers and thoughts, and my Mentor John Sullivan, visited all of us often to help us Keep The Faith.  I was in the hospital two months, which is longer than the average at the time, which was three weeks.  A staph infection about nailed me, after my initial surgery, but after a clean-up surgery, I made it.  Sully told me, it would not be easy, but be patient which was difficult for me, but he and my medical and personal partners saw me through the duration..

Three and half months later I wrote my Donor family, and heard back from them after a while, and certainly understood, I may not ever hear from them.  I did ironically when I was visiting another friend who also had a lung transplant, which was the first I knew of the passion my Donor had for nursing and other likes.  As I had grown large respect for nurses over the months I was being cared for, it seemed appropriate that a nurse had saved my life.  The cost she paid can never be repaid, but her oldest son, Travis J. Murphy has welcomed me and over the years, after meeting for the first time four years after my transplant.

That relationship has transitioned and developed into truly a unique partnership, as I protect the Gift of Life his Mother, Judy Murphy gave me 9 years ago.  I never feel like celebrating this event for me, but rather will always remain in quiet gratitude of my precious Gift of Life by my Donor.  Keep The Faith.

 

An Easter Tradition

Every year (maybe the past 7 of them) at Easter Time, I visit our great chocolate manufacturer, Sarris in Canonsburg, PA.  I buy two big solid chocolate Easter Baskets, and then on Good Friday I deliver them first thing in the AM at shift change at UPMC.  One for the nurses in ICU, and one for nurses on 9D, the transition floor, where I was a patient 9 years ago this month.  This year not only did I deliver the Easter Baskets, but also a copy of my book for their library break rooms, and a picture of the new P. Buckley Moss print, made for my 3rd annual Donate Life Art Show in my custom frame & art gallery in McMurray, PA, April 13-14th.

As with profits of the sales of my book, the profits my store garners from the sale of this art will all go to the continuing education of cardiothoracic transplant nurses at UPMC.  The art work created by Pat Moss is titled “A Gift of Life”.  It tells the story of how transplants start with a Organ Donor, and along the way angels and nurses help us along as we take advantage of getting back into out lives.  I feel we owe that tribute to our Donors and medical partners who help us get there, then it is up to us.

Nurses are so important to us recipients and they do so much to help us.  My appreciation is more than most, since my Donor, was a nurse.  Her passion for nursing was shown in her favorite color which was purple, and it also is color of the smocks for the nurses in “A Gift of Life”.  Keep The Faith.