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.

YO YO MAhn

I got a call from the Transplant center yesterday with the results of last Thursday's bloodwork and it seems that things have significantly improved. When they initially discovered the CMV present in my blood, the IgG titer levels were at 64,000  ("normal" is between 250-500) and so they were a just little bit concerned.

As of last Thursday my level had dropped to 1000. 

My white blood cell count was back up to 3.6 (normal is 4-11.)

So the decision to treat this problem with the large dose of oral meds was indeed a brilliant move.    Ahem.

They are having me come back to clinic again this Thursday for more major testing.

As I've told some of you - the tx center folks are always telling me that my white blood count is low....

my red count is low.....my H&H is low....

I told them:  "I'm just down about a quart! 

If we could ease up on all of these blood tests things would surely rebound!"

It might be awhile until they let me prove this theory to them.

Thanks for checking here.

Eight Is Great

Eight months ago tonight I was living with new organs.

It's been quite the road this post transplant road to recovery. As mentioned in my last post I am currently doing my best to beat the Cytomegalovirus. I am doing this in a way that will come as no surprise to most of you - and that is - on my own terms. I was instructed at the time of the last post that I would need daily IVs for the foreseeable future. I could either carry an IV pump with me 24/7 for the infusion or I could sit down for approx. 1.5 hours twice a day and administer the IVs to myself. This was to be done via a PICC line that they would put in my upper right arm, snake through my shoulder, my chest, and into an area of my heart.

 Like this -

OK This over exaggerated, highly distorted, and complete  misrepresentation is Bob's idea of the proposed PICC line.

-taking the long way home as opposed to using my left arm because of the fistula that I have in my left arm. This is the same reason they must give me all IVs and take all my blood draws and  blood pressures  from my right arm. Darn fistula.

So after being told all of the ins and outs of such an undertaking, I politely said "No." and said I was willing to take the high doses of the potent oral meds and see where that got us. Though this required  quite the concession by Dr. Yang, he decided to let me try it and one week later, the CMV rate, which a post tx coordinator told me was the highest she'd ever seen, had come down a bit. Tomorrow I go for another measure and if the meds have continued to do the trick, then we will continue with current drug therapy.

Although I have a few other issues that I'm dealing with concurrently, this has been the biggest and most dangerous pest. I'll complain more on the others later. For now, I'm happy to be here and happy to be winning the CMV battle.

Hard to believe it was only eight months ago tonight that I was laying in ICU astonished to be alive. 

Sooooo much has happened and we've been through sooooo much since then. 

Thanks for sticking this out with me and for continuing to check in here.

Eight is Great and more soon.

Someday an answer will find me....

It has been a long winter.

Lately I've been having a couple of blood problems. Too high of this. Too low of that. I still have blood labs done twice a week and generally although I check the results online, I don't hear much from the transplant center unless something is way wrong.

I heard from them last week and they ordered several extra blood tests for me to have done this past Monday. I heard from them again this morning with the news that I have an active blood virus that they are a bit concerned about.
Concerned to the point of quadrupling my medicine and restarting the IVs that I had received once a month for three months in the fall. Now they want those IVs to be done everyday for the foreseeable future. They briefly told me that they will put a long-term use IV line into my arm and then I will have the fun of giving myself the IV each day.

My next clinic appointment wasn't suppose to be until April, now they want me to come up in two weeks for a "major" blood work-up and consultation to see where things stand. 

That's all I know for now. I'm sure more will follow.

It has been a long winter.

Done Vida

A beautiful painting of the Gift of Life symbol that Kara made for me for Christmas.

              March is National Donate Life Month.

                                               Read up on it.           Think about it.

Gift of Life Donor Program                                            United Network for Organ Sharing

                                                    Facts About Organ Donation

                                                             Blurring the Lines...

This is a repost of an interview of  the March 19, 2012 episode of NPR's Fresh Air program with Terry Gross.

It is incredibly thought provoking and extremely informative. 
To give equal opportunity to all sides be sure to listen to the whole episode.

And check out this Pinnacle video on the right side of the page here: 
http://www.pinnaclehealth.org/transplant.aspx

Countless thanks to any persons who have donated or intend to donate life saving organs.

Seven

SEVEN months ago today, at this moment, I was in surgery with machines doing my breathing for me, machines pumping and cleaning my blood, machines monitoring my heart, my lungs and my brain activity.

Machines making sure I was alive and some damn fine doctors doing their best to keep me that way.

Now seven months later, by their genius hands and by the grace of God, I remain that way.

Although no one knows exactly which day has their name on it, I've been advised by the same doctors that I most likely wouldn't be here this day without that day seven months ago.

And so......I remain v e r y  thankful. 

'Seventy times seven times' thankful.

The incisional hernia fix was a month ago tomorrow and although things are still not feeling all copacetic in that region, Dr. Yang assures me it's "all fixed."  Time will tell. 

It's been a crazy, rocky road but as of  late things have settled down into a post transplant groove that will serve as my "normal" for the future. The sudden changes, unexpected events, and all the daring drama seem to have faded for now or perhaps it's just the excitability of the patient that has calmed.

Either way, this blog is obviously starting to wind down as it has successfully served the purpose for which I intended it. I've been asked to speak on a transplant panel in June and I hope to see if this blog could continue to help anyone else and so I will keep it going for the time being and post when I have something new to report.

Thank you for continuing to check in here.