'memba me?

Look at the date!
August 2, 2018
Three years since my last post and FIVE years today since my transplant surgery.
A lot of water over the dam since my last post but this blog continues to fulfill it's mission statement by letting family and friends know what's up and so here we go.............

As I’ve mentioned many times,This transplant thing is fluid.
It’s a road.
It’s a journey.

At times the road has had some crazy bumps in it other times it’s fairly smooth sailing... definitely smoother than dealing with the basket of troubles I had in my last days as a full-blown diabetic that were destined to put me in an early grave.
The confines of time, space, and the parameters of TMI, will keep me reigned in to saying that over the past five years Recovery Road has always been a work in progress. I have not stayed on the same immunosuppressant drugs for any great length of time because for one reason or another, they have all disagreed with my system and and several brought about some particularly undesirable side effects. A while back they started me on infusions of a drug called Belatacept .
Once, every 28 days, I would go to the hospital and they would weigh me, mix the drug and then I would receive it via IV. The whole process taking about three hours and although a bit cumbersome to take time out of life, drive to Harrisburg, and do this, it was this drug therapy that had the least amount of nasty side effects with. The downside was that it was more than $1500 every 28 days. Ugh

Since then, I have pretty much exhausted the class of immunosuppressants that I need to be on. Currently I’m on a drug called Everolimus that is really wreaking havoc with my internal system and I’m working to have something or other changed.
Brightest side of this coin is that Dr. Yang and his staff all tell me that my “grafts” as the transplanted organs are called, are working absolutely wonderfully! Woo Hoo!

For this I am very grateful.

Speaking of being grateful, The origin and nuclear center of my gratitude begins with my donor and his family.
As I’ve mentioned in the posts here once or twice, I made contact with them shortly after my TX and stayed in touch with them semi-anonymously via mail through and channels of the gift of life organization. That was until February of this year when I received a note from Pinnacle saying that my donor family would like to make contact with me. Gift of Life sent me a release form that I signed, dated and sent back and within a week I got a call from my donor's mother and that night we talked for two hours and 40 minutes about everything. She told me all about her son - my donor,, their family, and their unselfish belief of making good out of the very worst of times. It was evident that even without any of the above mentioned ties… I would certainly have chosen to be friends with these people. I spoke to my donor‘s father and found their family to be very, very, loving people.
It’s so happens that my donor, Cecil, has a sister named Taylor who was graduating from college this spring and through our conversations the family invited me to join them at her commencement. So in May of this year almost 5 years after my transplant, I got to meet the wonderful family who gave me the quintessential “gift of life.”
I was invited to join their family/extended family for a celebratory dinner at a great restaurant in Baltimore's Inner Harbor where I met almost two dozen members of family and closest friends. It was a fantastic, fabulous day! These people made me feel like a rock-star and I was so humbled by their love, their interest, and their genuine concern.
Driving home that day, I posed the question to myself “Just how lucky can one transplant recipient be?“ I love these people, I will be eternally connected with them. I hope to be a part of their lives and have them a part of mine for all my days remaining.

So this has been the biggest news of the past three years and it just happened within the last several months. Other than that, I am still kicking. I have been blessed with many, many wonderful things since 8/2/2013.
My oldest son Travis, got married to a beautiful girl named Sabrina and since then, they have had two gorgeous young girls. My daughter Kara, is living the dream and exploring the mid west of the US, making me green with envy as she hikes, bikes and explores some of the most beautiful land in our country. Nick my youngest son, is well, lives nearby and works in the IT department at a local high school.
My dad and my brother are both doing well and it just all adds up to me being very, very blessed.

I thank you for checking in here, I can’t promise to make posts as regularly as I once did because the news isn’t all that exciting but if anything big comes along you’ll be sure to be able to read about it here.
Thanks once again for your friendship and concern.
Enjoy each day!
The very best to you all!

Some joyous moments from the past five years that would not have been possible without the Gift of Life.

Day One Post TX

My wonderful donor family - Cecil, Taylor and Andrea

My Donor Cecil

Modern Day Bob

And the Stars Still Shine.....

I wasn't going to make a big deal out of yet another transplantaversary but I feel that I have to.

Today, August 2, it's been two years since I got my second chance at life.
A friend asked me if it felt like it just happened yesterday or a long time ago. I said "Yes."
In some instances it seems like light years ago already - eons since I took my last shot of insulin. Of course when you go from 4 and 5 shots a day down to none it's nice to forget about it. When you don't damn near die from severe hypoglycemia every few weeks it feels good to put that behind you as quickly as possible.
In many other ways, as I relive all of the events of two years ago this weekend, it seems like it all just happened. So many details that have been burned into my eidetic memory make it seem like I just lived those 27 days in the hospital yesterday. I vividly recall the scenes, sounds, smells, the people, the timing, the most minute extraneous details or at least those that weren't shrouded by the haze of some very good drugs. Now with those memories and all of  the background information that I have since sleuthed out about my donor and their story, I have even more to add to the tableau of the whole experience.

This past Friday, July 31st,  I paused shortly after 12:30 pm to mark the exact time when my donor sustained the injury that left him with final cessation of activity in his central nervous system.
That day's weather was sunny and warm, with a beautiful crystal-blue sky just like it was here on Friday. I can't even begin to explain to you the thoughts, the feelings, the cosmic forces, that draw my eyes to the sky and make me wonder out loud.

Yesterday at 11:45 am, I remembered that at the same time two years ago, I was just about to have lunch with my son Nick, - BLT's with tomatoes and lettuce from my garden, when I received the call from the transplant center. With permission from the tx coordinator I ate my BLT and not only was it fantabulous but it was also the last "real food" that I would have for the next 10 days. After I ate that lunch I took a shower, paid some bills, cleaned up around my house, and left for the transplant center all the while not knowing if this would be another dry run or not. In fact, even after going through all of the pre-op tests, bloodwork, x-rays, and speaking with my surgeon Dr. Narins and Becca, my transplant coordinator,  I was told that we wouldn't know until early the following day if things were going to be a go. True to the doctor's word I heard from the staff shortly after 8 o'clock the next morning that the surgeons were on their way back with organs that were in great shape and that the surgery would begin around 11 am.

                                                                     Visuals


And so.....as I write this.....two years to the minute right now I was in pre-op being readied for the life changing operation. Although I hadn't slept much the night before, and they had already given me some meds to relax me a bit, I was still wound up tighter than a two dollar watch watching everyone and what they were doing, asking questions, making observations. Pretty much just bouncing off the stretcher. Then I said byes to my family and they wheeled me into the operating room, slid me onto the table and started the big IV and that was it. I was in the doctor's hands and the arms of God for the next seven hours.

Two years later here I am. It hasn't been without some bumps in the road and I still deal with some of those bumps. But even on the worst day I have now, all I have to do is to think back on how I was feeling shortly before the surgery and any "bumps" pale in comparison.

Each morning as I get to my feet I thank God for this day. I know a lot of people do this but when you come so close to not having it....things are just a little sweeter. I still hope that I can be of help to anyone who may be facing this procedure. To give them knowledge, insight, and encouragement at a time when they need it most. In my case, I had my friend Jan as my own tx coach to answer my questions, boost and bolster me through the dark times and be completely supportive through my recovery.
I am very thankful for the tremendous blessings of my donor, his family, my family, the doctors, the incredible nurses, and staff at Pinnacle, and for all of my friends.

Thanks for sharing this ride with me.

Twenty Months

Today at this moment TWENTY months ago, I was in the midst of my life saving transplant.
If you live in Pennsylvania, have friends or interests in Pennsylvania, could you please consider supporting SB 180?
Hopefully this year we can get this passed and there will be many more people giving thanks for 20 months and perhaps many more of  healthy life.
I've met this kid Tony, he is quite the optimistic guy and we can sure use more of his kind in this world.
Let's give him a chance at a much better life.

Thanks!

Senate Bill 180 Resources          Find Your Senator       stornone@donors1.org

Post Tx Christmas II

It's been quite awhile since I've posted here, so I want to thank you for continuing to check.

As I write this at my Dad's home on the mountain, the winter winds are howling and I hear distant church bells playing Christmas carols. It is the first hour of my second Christmas, post transplant, and I am still marveling at this gift of gifts that I've received. Since the major med change at my one year mark, I have been doing better physically than I've been in years. 

Now if a few other things fall into place, I'll be ready to take on anything.

On other fronts, here is a little feature that is currently on the Pinnacle website: Bob Story

I'll try to post just a bit more regularly, if for no other reason, just to let you know I appreciate you looking here.

Until next time....may life be good to you all!

" I wish you a hopeful Christmas

   I wish you a brave new year!"

Donate Life Act (SB 850) Update

Many of you have been asking and just this morning, 3.5 weeks later, I got this official communique from Gift of Life -
I'll be bugging you for support again early next year.
Thanks!

Donate Life Act (SB 850) Update

Dear Supporters of the Donate Life PA Act (SB 850),

Thank you for your work this year in support of SB 850.

YOUR LIFE SAVING MESSAGE WAS HEARD and THERE IS NOW A COMMITMENT TO ACTION!

Thanks to your repeated and vocal message regarding the importance of action on the Donate Life PA Act—the PA Senate strongly endorsed the bill with a vote of 47-3. However there were not enough session days left in the PA House though to bring the bill to a vote. BECAUSE OF YOUR VOICE, we did receive a commitment from House leadership to address this important issue when they return in January 2015. We will need your support in the coming months as we look forward to working with the legislators to honor their commitment. We will reach out to you early in 2015 as we prepare to move the Donate Life PA Act forward and save lives together.

Sincerely,
Gift of Life Donor Program
& the Save a Life Now PA Coalition
401 N. 3rd Street
Philadelphia, PA 19123
215-557-8090 ext.1132
www.donors1.org

Well....

Last Monday, I spent the day at the Pensylvania state capital in Harrisburg with approx. 100+ other folks from across the state in an effort to get the Donate Life PA Act on the books before the legislative session adjourned. 
Now I don't have a single bone of political activism in my body but as you probably realize, this legislation is very near and dear to me. If you follow this page at all, you've noticed that I've been trying to muster support for this law.

I arrived at the group meeting place on the Capital's steps and I was on scene for about 30 seconds when a friendly lady named Diane came over and struck up conversation, welcomed me, and gave me a Donate Life PA tee shirt. Diane wasn't one of the organizers, but rather a long time supporter and a huge advocate of organ transplantation. I learned later that she has been actively involved with Gift of Life and it's cause, since the death of her husband who was an organ donor. I also met Masha and Jen -  more quality people from northern PA whose lives have also been intertwined with the transplant process. ALL of these folks are so friendly, so helpful, so caring, that I'm beginning to believe that this is a beautiful side effect / gift from being touched by the transplant experience.
A sort of - "Let's not try to see through each other in this life......Let's try to see each other through" philosophy that this world could use a lot more of.
I aspire to be more like these people.

Once inside the Capital, we met with folks from Gift of Life, CORE, NKF, and others and were given information and directions on who we needed to petition to get this bill passed. I went to the offices of my state senator and my district representative and introduced myself, had extended conversations with their staff, and  expressed my thanks as both of them have been supportive of  Act 850.

All of this peace, love, and understanding had me feeling so good as I left the capital that day. I had met some wonderful people, it was a spectacular Kodachrome kind of day with bright sun, deep blue, cloudless skies, and crisp autumn air that warmed to a welcome 76º by mid afternoon. The capital is an absolutely gorgeous building, steeped in history, and in some small way, maybe it was a tiny bit of history that we were all part of today.

That was last Monday. 
SB 850 needed to be passed by the House by Friday.

It didn't make it.

Now, when the legislature convenes, all the work to get the Donate Life PA Act passed will again, start from square one.
Now I know this is the way the game is played, the way legislation works, but there are lives in the balance here.
It's all very frustrating.

Thanks for your help, your support, and for checking in here.

Congratulations and THANK YOU!

Dear Supporters,

Thanks to your hard work and commitment to donation and transplantation, Senate Bill 850 was passed yesterday in the Senate by a vote of 47 to 3!

Now the bill will move to the House Judiciary Committee and then the full House for consideration and we still need your help. Please keep calling THIS WEEK – now to your state representatives. Please ask them to:

• 1. Support Senate Bill 850

• 2. Call Representative Mike Turzai (House Majority Leader) @  (717) 772-9943 and push for a vote

• 3. Pass Senate Bill 850 AS SOON AS POSSIBLE

Please also pass this on to your friends and ask them to call as well. We need our representatives to hear from as many supporters as possible – family, friends and coworkers.

You can find your state representative at this website: Find your legislator


More information about the Donate Life PA Act can be found at: Join Us | Save a Life Now PA


Thank you again for all you have done. With your help, we can pass this law and save lives.


Kari Rowe
Volunteer Coordinator
Gift of Life Donor Program
401 N. 3rd Street
Philadelphia, PA 19123
215-557-8090 ext.1132
www.donors1.org



Just FYI Senator Scott Wagner, representing York, voted in support of this Bill.
I'd like to think that the emails and calls to his office may have influenced him to this end.
Now a folo-up email or call to his office @ 717.787.3817 would be in line to express our thanks and gratitude.

See how your State Senator voted:
Roll Calls For Senate Bill 850

Thanks so much for your help with this.
PLEASE don't stop until it's a done deal.
We've come too far!