Wednesday, July 2, 2014

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.

Friday, June 6, 2014

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!







Tuesday, June 3, 2014

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.


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


Friday, May 30, 2014

In My Eyes.....



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.

Friday, May 2, 2014

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.

Tuesday, April 8, 2014

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.

Wednesday, April 2, 2014

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.