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.

Wednesday, March 19, 2014

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.

Saturday, March 8, 2014

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.

Sunday, March 2, 2014


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.


Monday, February 3, 2014

Like a Phoenix......


Well.....got through yet another one.

All went as planned and now CaseID 321918 is back in his comfy home this snowy evening.
It was questionable early this morning if we would even be able to get to the hospital with the ice and snowy weather. Dr. Yang's office even called to see if I would be there, as north bound route 83 was completely shut down for a while. (Thanks to several of you for the ride offers.) But we left with plenty of time and Nick got me there and we were even early.

2/3/1014 - 2:23 pm

FRM:orstatus@pinnaclehealth.org
MSG:CaseId: 321918, Patient has arrived in the Operating or Procedure Room
________________________

FRM:orstatus@pinnaclehealth.org
MSG:CaseId: 321918, Surgery or procedure has started
________________________

FRM:orstatus@pinnaclehealth.org
MSG:CaseId: 321918, Surgery complete; preparing patient to leave the room
________________________

FRM:orstatus@pinnaclehealth.org
MSG:CaseId: 321918, Patient is in the Post Anesthesia Care/Recovery Unit
________________________

FRM:orstatus@pinnaclehealth.org
MSG:CaseId: 321918, Patient has been discharged from the surgical area

The doctor continued my pancreas incision making it a bit longer. Which, although a little more than uncomfortable, I guess is better than a brand new cut because with all the surgeries I've had over the years I'm really beginning to look like some kind of thingamajigsawpuzzle.

                                                                          Dr. Yang

Things are true to what the doc said - 
I'm pretty sore this evening and he's collared me with several limitations (grrrr) like:
NO snow shoveling, No lifting any weight at all, and No driving for a while.

So if you see me thumbing along the road of recovery stop and give me a lift. Will ya?
I've got good stories. 
I promise it wouldn't be a boring ride.

Thanks to all of you for all your support and for checking in here.

Sunday, February 2, 2014

This is Worth My Attention......

Today, it has been six months since my surgery. This is kind of a milestone in the transplant world.
I was reminded by a very good friend last night, as I was watching the Penguins game, that six months ago I was in a very different place, thinking very different thoughts. I fell asleep last night reliving those moments.
All in all, it's great to be here.
Six months ago, at this moment, I was just about half-way through my transplant surgery.
Tomorrow at this time they should just be finishing up my incisional hernia surgery and then it's back to the now familiar road of recovery.

I certainly appreciate all the good wishes and offers of help, and to the people who observed this 6 month date with me. It brings a big 'ole smile to my face. Thank You!
I'll post tomorrow after-the-fact to let you know how it all goes.
Thanks for checking in here.