'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!

Urgent - Donate Life PA Act - IN JEOPARDY

The following is a late afternoon, urgent email that I received from Gift of Life today.

PLEASE SUPPORT THIS BILL!

If you haven't already, please sign the petition and consider using the links previously listed to copy and paste a form letter and email it to your State Senator. This info is also listed by following the links.

THANK YOU!

Dear Supporters,

Over the past several months we have asked for your assistance in advocating for the Donate Life PA Act (Senate Bill 850). Today we need your help more than ever.

SB 850 is scheduled for a vote in the full Senate tomorrow. Today we learned that the lobbyist for the state coroners association has circulated an amendment that would eviscerate the bill, as well as strip Pennsylvanians of their rights and jeopardize criminal investigations.

The Solobay Amendment would completely eliminate any requirements for coroners. As is the case now, they will be able to deny organ donation over the phone without ever investigating a case. This means that, on average, about 50 transplantable organs will be lost and 10 or more families will be denied their right to determine their loved one’s legacy. 

Please call your senator to ask them to OPPOSE the Solobay Amendment while supporting SB 850 in its current form. The Solobay Amendment will hurt organ donation and ultimately more people will die waiting as a result.

Sincerely,

Kari Rowe
Volunteer Coordinator

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

Latest Update

This just in.......

Dear Volunteers and Donate Life Advocates,

Senate Bill 850 was successfully reported out of the Appropriations Committee on Monday and it is VITAL that it be passed by the full Senate next week.

To those of you who have already made calls and written to your senators, THANK YOU!—but we still need your help! We need you to keep calling! Please challenge 4 of your friends or family members to make a call as well.

In support of the upcoming vote, we are asking all of our volunteers who live or work in Pennsylvania to call (or write) their state senator:

• Ask them to VOTE YES and support SB 850 (if you’re told they support the bill, be sure to thank them!)

• Urge them to contact leadership to ensure that SB 850 gets a vote by the full Senate

• Remind them that the hospitals and the community support  and needs this bill

• Finally, let them know that you support the bill because it will save the lives of those on the waiting list



A list of telephone numbers for all Senate offices is attached and you can find your senator by entering your Pennsylvania address here: http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/

Finally, if you haven’t already done so, please sign the petition at http://www.savealifenowpa.org/join-us/ and share it with your friends and family.

Thank you for your continued support and hard work- keep us updated on your Senator calls and send any questions our way!

Kari Rowe

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

 

Please.......

OK now I don't ask for much but if any of you can appreciate my being here at all, (and I know it's hard some days) or anyone else that you know that has benefited from a transplant, could you please consider signing this online petition in support of The Donate Life in PA Act?  No money. No hassles. No hard time. Just your name on an email document.

The Donate Life in PA Act is summed up like this : 

Pennsylvania has long been a national leader in organ and tissue donation and transplantation. We are home to many of the finest transplant programs in the country, but with that comes the responsibility to advocate for those awaiting a second chance at life. There are more than 8,300 people waiting for an organ transplant in Pennsylvania. Over the past ten years, nearly 500 of those waiting in Pennsylvania have died annually—or about nine people each week. I came very close to being one of those nine.

The first step towards solving this public health crisis is passing the Donate Life PA Act. This legislation will ensure that more life-saving organs are actually donated by increasing public awareness about the issue. It accomplishes this by bringing education about donation and transplantation to high schools, nursing schools and medical schools. Pennsylvania lags far behind national leaders in donor designation on driver’s licenses. Education in schools and instruction of those being trained as medical professionals can help remedy this by dispelling myths about donation.

The Donate Life PA Act also strengthens regulatory oversight by ensuring that all anatomical donations are initially referred to a federally-designated and regulated organ procurement organization (OPO). It also specifically prevents the type of unregulated recovery of tissue that led to the Biomedical Tissue Services scandal involving the theft of body parts at Pennsylvania funeral homes.

The Donate Life PA Act will help save the lives of people awaiting transplant in Pennsylvania. We ask for your support in passing this important legislation as soon as possible. Every day of delay puts more lives at risk.

_________________________________________________________________________________

If you feel really zealous, those of you living in Pennsylvania could let your State Senator know your feelings on this.

Find your legislator

Here are a few other links to help you along:

Save a Life Now PA - Donate Life PA Act One Step Further to Passage

 

IF NOTHING ELSE......could you please sign this?  

Join Us | Save a Life Now PA

I thank you, as do the 8,541 (as of this very minute) people in Pennsylvania that are waiting for a transplant.

The past is never far....

It was a year ago today that I came home from the hospital, post-transplant, (for the first time) and I so fondly remember just how sweet it was to be here.....balloons, banners, cards, my couch, my guitar, my REFRIGERATOR, my bed!!!

Home. Home again. Ahhhhhhhh.

Though it was short-lived (I had to go back within 4 days) it's a lesson that's imprinted on my brain now not to ever take even the simplest things for granted. Some of you know that I have been reliving the events of last year day and night for the past twenty days and never taking things for granted seems to be the underlying theme.

Thursday I had my official " One Year Out" clinic appointment. I text a friend that as I was going into the appointment, Inside Job was playing on my Pandora. I thought this was a beautiful coincidence and definitely good karma. The one year marker is a bit of a milestone in the tx world and they are very happy with how my grafts are performing. Although I am having some other issues that are directly related to the aforementioned success, they've handed me off to "other issue doctors." and despite my very vocal protesting I have had to have some rather medieval tests done. What they originally believed was the result of CMV, the transplant surgeons now think (hope) that the trouble is coming from the combination of meds that I am currently on and will be consulting with the other doc to determine a course of action. On Thursday they ran a couple blood tests to check levels of  CMV, eGFR, RBC Morph, Abs Baso Ct, Abs Eos, Abs Immature Gran Ct, Abs Lymph Ct, Abs Mono Ct, Basophils, Eosinophil, Immature Gran, Lymphocytes, Mature Neutrophils, Monocyte, Cyclosporine Levels, Lipase Lvl, Amylase, Magnesium Level, Phosphorus Level, Anion Gap, BUN, Calcium, Chloride, CO2, Creatinine, Glucose Random, Potassium, Sodium, CBC with Diff - HCT, HGB, MCH, MCHC, MCV, MPV, Platelet, RBC, RDW-CV, RDW-SD, WBC, and some others.

I also had the joyous revelation the other day that it's been more than a year now since an event of hypoglycemia has almost killed me. With the deteriorating kidneys and the diabetes, this was becoming an all too often occurrence back then and so this alone is worth any inconvenience or symptoms that I have now.

Since I've now cleared the one year hurdle, I am not scheduled to return to clinic for six months (analogous to birds being kicked out of the nest) and my twice-a-week blood draws now are cut back to once every two weeks. Woooooo Hoooooo!!!

That's the word from here for now.

Sign me......Forever Thankful.

Blog Maintenance

Alright, as much as I really hate to do this, I have to bother the people that I appreciate the most on this blog - those that leave comments.

Because the web is full of jerks, miscreants, and those just out to make life a drag for everyone else, I get about 50 pieces of email a day from web-bots "commenting" on my blog. Now I have the screening set up that their comments don't show, but I still get their emails in my inbox and it's really becoming bothersome.

Most of these look something like the following.
(The third party links have been disabled to protect you all.)
________________________________________________________________________________

• Anonymous has left a new comment on your post "Ten": 

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In this game may necessitate the gamer.

My web blog; dragon story cheats

Posted by Anonymous to Bob's Inside Job at August 3, 2014 at 12:34 PM 
____________________________________________________________________________________________

• Anonymous has left a new comment on your post "Ten": 

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I would like to think so.Sara Underwood can be described as host of G4's Attack on the Show (AOTЅ), tthe live cable program where shе rеports oon tech news and gadgets аand tweets for the audience during commercial breaks.
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Posted by Anonymous to Bob's Inside Job at August 7, 2014 at 12:54 AM 
___________________________________________________________________________________________

• Anonymous has left a new comment on your post "Unthought Known": 

What's up, this weekend is good in support of me,
as this moment i am reading this enormous educational paragraph here at my residence.

My site: protein shake diet

Posted by Anonymous to Bob's Inside Job at August 7, 2014 at 9:25 AM 

____________________________________________________________________________________________

Ridiculous, sad, sometimes funny, but always a pain in the butt.

So as you can see it's a bit of a drag to deal with 50 of these everyday and so I've had to add a "Captcha" or  "Word Verification" when you want to add a comment. I sincerely hope that this doesn't discourage ANYbody from leaving their thoughts. If it does, please let me know and I will remove it and just put up with the spam.

Thanks for your cooperation with this.

III

This is a beautiful day!

Thanks to all of you for the great wishes, texts, and remembrances.

Sign me....

"Darn Glad To Be Here"

Evening of August 2, 2013

 Evening of August 2, 2014

My Frame of Mind.......................If I could frame my mind, where would I hang it?

II

Today, a year ago, just about mid-day was when I got "the call." 

The number on my phone came up as UNKNOWN - that's how the tx center always shows up, but it couldn't have been more fitting as there was no way to have known what exactly lay ahead. It's been a heck of a year, time that I almost surely would not have had, an incredible experience, and isn't that what life is all about.....the experience?

Sorry about replaying all of this for you again but it is like a movie about a life that's like a movie that is just on continuous replay this weekend. Even the weather today mimics that of last August 1 to a tee.

Enjoy this beautiful day!

Triduum

I

Ok, for those of you that know me close-up, you know that last year at this time things were kinda bleak. July was coming to an end and I hadn't had a prospective call from the tx center in like.......ohhhh a hundred years or so.

Unawares to me.......that began to change on this very day July 31st, 2013.

Today begins my forever-on own personal triduum.

At about 12:30 this afternoon, a year ago today, my donor lost his life and shared the one he had with me so that I could keep mine.




It is a beautiful morning here in South Central today, just as it was a year ago this morning. I can not even begin to tell you the thoughts, scenenarios, and emotions that are all part of the circus inside my head today.
It is all so very bittersweet. I am forever grateful.

This is the ever-constant thread that is running through my thoughts for the next few days.

If you get a chance about mid-day today, give a pause, a smile, a prayer, or a shout-out to my donor.
I know I will.

Thanks so much.

Eleven

Coming into the homestretch.....

It's been .92 years, 

or 11 months,  

or 47 weeks and 5 days, 

or 334 days .....

(I will spare you the hours and the minutes.)

... how ever you count it - What a long strange trip it's been.

I remember the wise and wonderful Dr. Ottman telling me as I laid in the ICU last August not to fret the short-term stuff but to look six months down the road.

Well it's been six months almost twice over and I'm still dealing with some things that I thought would be long gone by now. 

I was so psyched to declare that I was CMV free last post and it looked as though I could look forward to feeling better this summer than I have in years.

But it seems that the universe has other plans. 

Now the  higher levels of CMV are back. I can not tell you what a drag this is to be dealing with again.

Argh.

On the flip side....

My talk at the Transplant Consortium went well. I met a lady from the NKF that recognized me from a photo shoot that I did for them more than 20 years ago. Crazy.

The panel that I was on was put together by The Gift of Life Donor Program.

We each told our stories in detail and then afterwards we took questions from the audience. It was very well received by the crowd of critical care nurses and other hospital personnel that take care of both donors and recipients.

I was personally thanked by a lot of them after the program was over for sharing my story.

And so...... As I slide quickly toward the 1st year anniversary My new goal is to have all of these problems wrapped up by August 2. That may be a lofty goal but that's what I'm shooting for.

Thanks for checking in here.....this time....and for all the past months.

The story continues.

Preterit

I had clinic yesterday and they gave me some very good news. I am currently considered CMV Free!

Hopefully I am all done with the nasty Cytomegalovirus but they will continue to check me for it in the coming weeks as the virus can return when the super dosage of drugs that I am currently on is adjusted back to more of a "maintenance" level.

Dr. Waybill told me yesterday that she believes it's possible that I have had CMV since the transplant but it is often difficult to get a positive test result and so it went undetected for a good 6+ months. They all said how much better I look relative to past months (they really don't tell you when you look like hell) and almost all of my blood levels are much better. My white blood count is back to normal, and my red blood count is also back in the normal range for the first time in ohhhhh.....seven or twelve years. Joy!

As I've mentioned, other than a few persistent issues that I'm dealing with, I've felt better lately than I have for quite some time.

I wasn't officially attended to by Dr. Yang yesterday but before I left, I asked one of the nurses if he was in and she asked if I needed to see him. I told her I didn't "need" to, but that he would be disappointed if I didn't say hello. She summoned him and when he came down the hall to see me - he had the biggest smile I've ever seen him wear. We talked at length about my progress and he told me how they have discussed my case at meetings both at Harrisburg and in Philadelphia concerning the CMV, sharing details, implications,and results. We had a very nice conversation and I think that perhaps the dynamics of our doctor / patient relationship have improved. 

It's kinda nutty but I had  posted, a year ago tomorrow, that I was having an up-tick in blood numbers and now things are light-years better. It seems June has been a good month for me.

I hope the summer is off to a good start for all of you as well!

Ten

Among the verses of Faust of Goethe, there are:

If nine is one

Ten is none

Here is all the mystery

Ten is the symbol of the matter in harmony - 4 + 6.

Ten represents the Creator and the creation, 3 + 7, the Trinity resting in the expressed universe.

For Pythagoras, 10 was the symbol of the universe and it also the whole of human knowledge.

The sum of 5 + 5, the number 10 represents the two opposite current directions of the conscience:
involution and evolution.

The number ten is regarded as the most perfect of numbers, because it contains the Unit that did it all and

the zero, symbol of the matter and the Chaos, of which all came out; it then includes in it's figure the created

and the non-created, the beginning and the end, the power and the force, the life and the nothing.

According to Agrippa, "ten is called the number of all or universal, and the complete number marking the full course of life." He also attributes to it a sense of totality, the achievement, the return to the unit after the development of the cycle of the first nine numbers.

For the Mayans, it represents the end of a cycle and the beginning of another. The ten was regarded as being the number of the life and the death.

In China, the cross represents the number 10 - as the totality of the numbers.

For Pearl Jam - Ten was a legendary first release.

For Christians, ten signifies Completion - The Holy Spirit descended on the apostles ten days after the Ascension of Jesus.

And 10 was also the Pythagorean symbol of completeness.

In Bob World.......while the Ten month mark doesn't mean perfection or completeness, it does signify another month of progress. I had another CMV test the other day and hope to find out the results when I go to clinic later this week.
Although I still have some persisting abdominal issues, and I'm still working to get pre-op strength back, I've come a long way in just the last two months (since they finally discovered and began treatment of the CMV,)
and one heck of a long way since this night ten months ago.

In a nutshell - to quote The Beatles: "I've got to admit it's getting better....a little better all the time"

Thanks for checking in here.
Here's to ten more. 

In My Eyes.....

CORE

So.....This past Memorial Day weekend I went to a few cemeteries, visited with loved ones that have gone on, I talked with my mom awhile, I payed respects to others......and it was a very beautiful sunny, spring day. The kind of day that I have a new-found, deep appreciation for in lieu of all of the events of the past year.
A REAL appreciation deep inside as I continually thought of how damn lucky I was not to be currently residing among these stones. As I was winding up my visit, a marker, (above) on the back of one stone caught my eye and when I read it.......I got a lump in my chest roughly the size of a Kennebec potato.
I mentioned to a friend that I was glad it had been a sunny day and that I had my shades on.

OK, before you all go off thinking that Bob has gotten as mushy as a rotten potato, you have to understand that even beyond the side effects of some of the drugs that I'm on that can really wreak havoc with your emotions, this whole donor / recipient,..... souls united in the cosmic dust thing,..... really can't be completely appreciated from the the back seat of the theater. But when it's close.......when it's YOU.....or someone you love, be it the donor ....or the recipient.....it is on a much, much deeper, uber-intense level.

Now I have to be clear here, this was not my donor, but now that doesn't matter....we are all intertwined.

Words escape me right now and eloquence has never really been my friend, but the parents of the lad that rests under this marker (he was only 16,) who saw to it that his young, effervescent spirit could live on through organ donation and gave that gift of life to others, these people are super human to me.
Beyond the human vice of selfishness, beyond the overwhelming grief that they had to have been suffering, and possessed with a power bigger than the pain - they chose to do this. These are the saints among us.

May God forever bless them and their son.

Comes a Time....

Number Nine...Number Nine...Number Nine...

Today marks the nine month bench mark of my transplant. 

Only nine months? Really?!?!?!?? 

The road has seemed longer than that. We've covered so many different scenarios.
Jumped through so many crazy hoops. Overcome so many arduous obstacles.

Now with the hope that the tx recovery gestation period is over - I am ready to move on.

The latest nutty impediment has been the CMV virus, but I found out yesterday at clinic that I am winning the battle. My CMV levels, when they were officially recognized several weeks ago, were 64,000 and now with the help of some darn powerful drugs and plenty of clean living, those levels have dropped to below 200 which the tx center considers "negative." They tell me that once I've tested negative three times in a row (over the coming months) - they will consider me victorious over the active infection.
This is such a welcome change as some of the issues that have bugged me for the past 9 months have been alleviated here lately and now can be directly blamed on the CMV.
The doctor told me that although they had given me the prophylactic IV's in the fall, kept me on meds to deter CMV, and had tested for it regularly, he suspects that somehow it had been "disguising itself" in my system and this has them baffled. He said he has even brought my case up at a conference at Penn recently to discuss this and alternate ways to detect the infection sooner.
Again, a CMV infection to most people is not a big deal, but to those with transplanted organs, it can really spell trouble so I am glad this is moving into the rearview.

Although my red blood count, and my H & H, aren't where they should be yet, most of my other bloodlevels are coming along nicely and my new organs ("grafts" as they are known in the business) are performing wonderfully. To be quite honest, although I still feel that I have a few things to be worked out medically, this past week has probably been the best that I have felt physically since my transplant.

Both the transplant nurse and then later the doctor told me that I "looked good" yesterday (?) and when I asked the nurse about this she said "Bob, there was a time, before your transplant, when you really weren't doing well. You were really pretty sick."
Funny, I don't recall them saying as much at the time but these people are all so positively optimistic that I probably shouldn't be surprised.
But all of that is now downstream. Life is upstream.
That's where I'm headed.

Thanks for the past nine.
Thanks for checking in here.