Saturday, August 16, 2014

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.


Thursday, August 7, 2014

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.)
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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.

Saturday, August 2, 2014


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

Friday, August 1, 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!

Thursday, July 31, 2014

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.

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!