2013 in the Rearview Mirror

January

At the end of recent years I've developed a bit of a personal custom of writing down some of the highlights of my life in the past year, some of my biggest shortcomings, the things that really sucked, and what I can do to make life better in the new twelve months to come. In recent years the big black cloud of end stage renal disease had been hovering over my head and never far from my conscious thoughts.
Below is a synopsis of how that portion of 2013 played out in my life.

2013 
...started off with my usual yearly appointment at the transplant center and this year my biggest question was why I hadn't been called with any kp offers in like forever.

I had not even been put on the Possible. Maybe. 10 Steps Down. or Maybe, But Probably Not lists.

It had only been 2 1/2 years since I was put on the transplant list but time waits for no one and as my GFR and other blood numbers continued to slide I became a bit more anxious. 

AND I was headed toward a surgery to install a fistula that I had no intent of ever using.

And so on January 24, I had my left arm's blood lines rearranged a bit to accommodate a new  

"vascular access" otherwise known as a arteriovenous fistula. 

This was only to be used in case I may need it to facilitate an organ transplant as toxins were building up in my blood at a rate that may soon nix my chances at any transplant.

And so we went from this :

To this:

A "fine vascular access."

BTW this has grown to about 5x this size now.

Since this has been put into my left arm, and my circulatory system was rearranged, all injections, all blood pressures, all blood labs, and all IV's have to be done to my right arm.

After almost a year of this my right arm is definitely showing signs of wear and tear.

February

After doing two stress tests and more bloodwork in February, I was okay'd by the tx center to be back on the active transplant list again. So after all the hoops and loops I'd been made to jump through - this was good. My arm was healing well. The surgeon was happy at how it looked at the post-op appointment. My nephrologist was like a kid at Christmas when I showed him that I had it done but he also knows that I was still not into anything that remotely had to deal with dialysis and so he assured me that he hoped to never have to use this new access.

March

The month of March was pretty quiet with the exception of getting approval of the fistula and being 

"cleared to use it." The only other news was that my Glomerular Filtration Rate (GFR), a test used to determine how well the kidneys are functioning, had fallen to 8. Nornal is greater than 60.

Not so good.

April
In April I made it a point to mention that it was National Donate Life Month.
Someday a generous person may save your life, the life of one of your family members, or the life of someone you know (like me) through organ donation.
You have a higher chance of needing an organ in your lifetime than you do of ever becoming a donor.
Think about that and then please sign up to be an organ donor. Tens of thousands of people are waiting for a transplant. You have the power to change someone's life so much for the better 
and they will be forever grateful.

I know.
I am one of them.

Gift of Life is my area's organization that is part of the nationwide organ and tissue sharing network run by the United Network for Organ Sharing (UNOS). They offer support programs to the family and friends of donors who gave the gift of life after death to help cope with the sudden loss of their loved one. These programs are offered free of charge in recognition of those who made the gifts possible. The donor program is also responsible for all aspects of educating the community about organ and tissue donation.

Although the Gift of Life program serves my geographical area, through this link: organdonor.gov you can register with any organ donor network in the U.S.

May

It was a very quiet month. I was really becoming a bit disheartened as it had been almost a year since I had any kind of call from the transplant center at all. The spring air was warm and wonderful, the world was full of new life but at the same time, in the quietest moments, when I wanted to be honest with myself.....
I could feel it slipping away.
My friends, who were checking on me, continually asked me how I was feeling and it was the same story each day to varying degrees so on the blog I posted a link that described the cruddy feelings listed here.

June

GFR up two points to TEN!

In what I called a "Summer Rally", my GFR had actually rebounded a slight bit to 10.

Other blood numbers were a little less desirable.

Still all quiet on the Pinnacle front so I gave my pre-transplant coordinator Becca a call just to see what was up. She advised me that I had not been forgotten, that there had been no appropriate organs,

 and she assured me that good things would happen for me soon.

July

I got out camping with some great friends, Glenn and Big A, 

and I did my best to enjoy the beautiful summer weather.

Otherwise, another quiet medical month. 

Friends keep checking on me, and I did my best to accent the positive but time keeps slipping...

August

August 1st, and an "Unknown" caller, an Unknown message, an Unknown future.

How crazily appropriate this was. I think it should be the cover of my next book.

So...Into the Great Unknown.

At midday, as I was about to have lunch (the last real food I would have in a week), I received a call from Becca at the transplant center with a potential kidney / pancreas offer. As she explained the ins and outs of what was going on, I swear I could hear a smile in her voice and I had the distinct feeling that she was as happy as I was (although at the time, my happiness was shrouded by a  tsunami of nervous reactions.)

Now you do your best to try not to get too excited because many things can happen, many things are apt to go wrong, and I had been here before. 

Still, your mind races, your heart races, you find yourself rushing around in a very automatic, almost robotic mode doing the silliest stuff before you head to the hospital - paying bills, making sure the house is presentable, taking care of mail.....

Then off to the hospital to sit and wait...

But it wasn't that way at the hospital this time. From the moment I arrived things were in full swing, happening at a crazy pace, even though it was still just a "potential" chance at the organs there seemed to be a different feel this time.

And different it was. The afternoon of August 1st I had the customary bloodwork, typing / cross-matching, chest ex-rays, ekg's, and a sit down discussion with my pre-transplant coordinator Becca, and Dr. Seth Narins one of the transplant surgeons. They went over the entire procedure again, explained risks, fielded my questions and did their best to set me at ease. This was SO helpful to me. Just to have these people sit down with me and explain everything again, to see their faces, and to be able to look into their eyes, gave me a good read that I was in very competent hands. Becca, who had been on this trip with me since the very beginning, had an air of reassuring confidence that meant more to me than she probably knew.
 Dr. Narins told me that the donor was 19 years old and so, if everything worked out, I would be getting some absolutely wonderful organs.

As for the big question..... Dr. Narins said he wouldn't be able to tell me if my transplant would be a certainty until he recovered, inspected, and had the organs in hand, only then he would say for certain that the surgery would happen.

August 2nd, at 8:30am, the hospital received a call from Dr. Narins and Dr. Ottman the surgeons who traveled 3 hours to the donor's hospital saying they were on their way back with two pristine organs, that the organs looked great, and to get me prepped for surgery at 11:30am .

They took me to the OR at 11:20 and started the 6 hour and 37 minute operation.

Dr. Narins told me later that when he grafted the new kidney into my body it began working almost immediately. He said generally it takes around 12 hours for the new organ and the new host body to meet, shake hands, and start working together, however he said my body was so full of toxic poisons that the kidney began working right away.

Later that evening I was in ICU surrounded by family.

August 3rd....Back to life.

The next two weeks were a constant mix of good news (that my new organs were working wonderfully) and the downer that I was constantly bleeding internally from the area where my new pancreas was attached to the rest of the system. A junction the docs refer to as the anastomosis. The surgical joining of two structures that are not typically connected.

They were doing their best to treat the problem "medically" (rather than "surgically.) So they hooked me back up to blood machines, several more IV's, gave me more plasma, more platelets, something known as cryoprecipitate and a very heavy dose of albumin, a protein compound, to help keep blood nutrients running through the blood stream and prevents these nutrients from leaking out through the tissues (via the bleeding.)

At the end of what seemed like a forever stay in ICU and forever and a day in the hospital....

I was cleared to go home. 

After saying goodbye to all my caregivers I left on a warm August day and everything on the ride home looked so darn good. I'd felt like I had been away for years rather than weeks.

This home-spun euphoria lasted all of 3.5 days when I woke up with a fever and feelings of ill being. The tx center sent me to the local ER who ran all sorts of tests and when the results were forwarded to Dr. Yang, he wanted me back in the Harrisburg hospital A.S.A.P.. I found out later that this was a bout of rejection, and rejection is one word that transplant patients do NOT want to hear.

All totaled,- it was 27 out of  the 31 days of August 2013 in the hospital.

18 of those in ICU.

31 units of blood, plasma, platelets, and the other aforementioned blood products.

But I got to go home with 2 new organs that were functioning wonderfully and I got to go home with a new outlook on life.

September

 The beautiful month of September started off with an inherently impatient guy trying to learn patience as I was not allowed to go out very much at all thus no big groups....no fairs....no farm markets....no stores....   no church....no lollapalooza gigs.....nuthin.
This took a bit of getting used to, but as I said many times, I did NOT want to risk getting put back into the slammer (hospital) or worse yet, endanger my new kidney and pancreas. All of this lo-key living, with not much physical activity, combined with the steroids and the umpteen other pills I was on didn't make for much quality sleep. And believe it or not during these everlong awake hours of the night, my mind would inevitably wander and wonder about my donor, about their family, who in the darkest days of their family's life, selflessly gave these gifts to whoever could use them.
These are truly special people. I hope God abundantly blesses them in the future.

Also making the scene at about this time were the "nasty tremors" (sounds like a punk rock band) that haunted me until my meds were changed in early December.

On September 17th, I had my first of three Cytogam IV's at home that went pretty well for all the hype.
Clinic visits every week or at the most two, and bloodlabs done twice a week make up my new schedule.
You see? I had to be on the mend in September because I was finding things to gripe about!


October

October was full of changes and tweaking (not twerking). 

Fine adjustments in medications...adding this one....subtracting that one....replacing this with that....four of these for one of those....  My transplant coach Jan had told me it would be this way. There's a lot to this transplant business. You really do have to live in the moment with a hope for the future.
The fine tuning of meds is a most subjective aspect to each individual transplant recipient. Although the powers that be know what drugs are needed - just how differently each individual can react to such medicines and dosages  may vary greatly. This is where the art of the science of medicine comes in.
At the end of the month came my second Cytogam infusion, this one was complicated a bit by a sudden onset of some major teeth-rattling chills and a real drop in blood pressure. My nurse Barb, was on top of it all and after shutting the IV down for 45 mins or so and restarting it at a very reduced rate, all ended well with no lingering effects. Two down. One to go.
The road to recovery post transplant may not be the smoothest road to walk, but it's sure worth walking nonetheless.


November

The Thanksgiving month started off with Dr. Yang agreeing to switch some major medicines on me in an attempt to stop the tremors. This was a big concession for him as you may remember just a month ago he shut me down cold saying that maybe we'd look at doing that after the new year. And so now he switched  one of my major immunosuppressants from Prograf to Neoral (or Cyclosporine). I can't say it was an overnight  success, (few things in this business are) but over the past two moths the tremors have reduced to practically nothing and I am so grateful because the Vibration Reduction mode on my Nikon lenses was no match for these shakes.
Midway through the month, I had my last installment of the Cytomegalovirus Immune Globulin IV. The nurse was aware of the trouble that I had last time so she slowed down the rate of infusion and it all went smoothly.

December

Even with frantic Christmas shopping, the maddening crowds (that I wasn't suppose to be in) and the battle to keep my white blood count above the red line, December was a great month.
Tremors were all but gone, the IV's were done, my WBC kept slipping but with a few shots of Neupogen and some of my own self-production the count as of today is back in the normal range. Christmas with my family was beautiful, and over the holidays I got to spend some time with a few friends that mean an awful lot to me. Others, that I really wanted to see but didn't get the chance to, or who were sick and didn't want to take the chance of polluting their low white blood count friend, are on my New Year's resolution list to get to see SOON.
This year I feel comfortable setting such a goal for myself and the coming year and I've told several of you how not only my health but also my demeanor and my mindset have changed greatly from last Christmas.
All for the good.
I am blessed.
It was a heck of a year.
Thank you for checking in here.
Thank you all for being such great friends.
And most of all, my greatest thanks to God, my donor, and his selfless, caring, and wonderful family.

May 2014 be good to all of us.



Post-Script.

I am finishing this epic post on the evening of my 5 month out mark.
Five months ago at this moment, the surgeons had just finished up and I was being taken to post-op.
Today, I had clinic and the doctors and nurses are extremely happy with my progress, my blood results (WBC is back in check), my appearance and my post transplant demeanor.

As always, thanks so much for continuing to check here.