One more time around might do it.......

It's just after 4:30 am on Thursday June 9th. Last night was very warm here with a low of 76 degrees. I had just fallen into a fitfull sleep about 2:30. At 4:30  I was awakened by another phone call from Pinnacle. This one has a sense of urgency about it. I was told that I am on standby again, but this time I wasn't told to 'just go about my day until I hear anything". This morning I was told to "have breakfast and then nothing else" and that they would be calling me back as soon as the matching was completed. Now, for all of you who are now thinking "Yeah! Alright!! Goodluck man!!!" and had these same thoughts last week when I was called, let me tell you first, how much I appreciate the good wishes,
Second, let me tell you that right now, as I type this, I am pretty damn petrified.

Last week was like a slap in the face to me where all of this suddenly became very real. I mean, I know it's real when each day I feel a little bit worse than the day before, but since last Friday night there has been this real sense of needing to get things done. Now again, I am under that gun with so much yet to do. Things like scheduling my bills to be paid..., writing down all the passwords to my bill paying accounts...having my house taken care of,work,gettinginvoicesout,gettingmycarinspected,work,getting graduationgiftstakencareof,shoot'sihavescheduled,planningforpeoplecomingtovisit,havingmygardentendedto,makingplansformyclasses,work,takingcareofinsurance...and making a myriad of other plans.

I sit here as the night fades into dawn wondering what / how much I can get done in the next few hours. And yet I sit here with my stomach feeling like I'm about to get on the scariest rollercoaster that I've ever been on and my mind is firing off on a million disconnected thoughts in every direction. - Paralysis by analysis.

So, I've got a bad case of nauseous butterflies, the worst case of heartburn I've had in years, and scatterbrain to the tenth power all at the same time and it's not even dawn yet.

And so easy going, cavalier Bob, with his laid back, take things as they come , Gestalt attitude, is pretty damn scared right now.

ANY prayers, thoughts, good vibes or karma that you can send my way will be appreciated more than you can possibly know.     Thanks.

I'll keep you posted...

Not this time.....

Alright so....fifteen hours later I just heard back from the transplant center and although I would have been a match, the pancreas from the donor was not a viable organ. So I'm not getting it nor is anybody else. So THAT was a bit of a roller coaster day. But hey, I was told this kinda thing would happen and I guess it's good to have a dry run just to get used to things. Thanks for all the calls, texts, prayers and other good vibes. I am really fortunate to have such friends.

Whoa! It's 2:30am June 4th, which happens to be my parent's wedding anniversary and I just got 'The Call' from Pinnacle telling me that I am a 'back-up candidate' for available pancreas / kidney organs. Right now they are running blood / tissue matches and I am in a holding pattern but this could be it! I'll post more news when it's available. If you've got an extra prayer...

Sometimes you're just not OK....

My latest bloodwork has showed that my Potassium, which was waaaaaaay out of bounds has come back to the highest level of normal and is holding there, so this is a big relief. You never know just how much a simple thing like potassium levels can really mess with your body. I went through a episode of what was diagnosed to be "Potassium Paralysis" where I woke up one morning with full body, stroke-like symptoms and couldn't move, couldn't talk,....nothing. Thankfully these symptoms went away when my potassium was adjusted a bit and I will be happy if I never have to go through that again.
So my potassium is a bit better now, my creatinine is relatively steady, but my GFR has fallen to 21 which is kind of  drag because they want you to start dialysis when it hits 15. I remain grateful for days that I feel good and try not to gripe too much on the days that I don't. I'm also grateful for all of you that check here to see how I'm doing. I appreciate each of you. Thanks.

OOOOH K

You know.....it's always something.....this week I had my regularly scheduled bloodwork drawn. Later that evening I was out with a friend and I got a call from my doctor's office to see "if I was OK" when I asked why, I was told that the tests had shown I had an extremely dangerous level of potassium (K) in my blood. A condition called hyperkalemia. This potassium build up is caused, in earnest, by failing kidneys, but in my case it was also exacerbated by a drug I've been taking to control blood pressure (this may all be relative to some of those down days I spoke of in the last post). So now instead of using that particular drug, I'm on a new one now 3x daily. And so we'll see.....more bloodwork in the coming week will confirm whether or not we've addressed the problem .

Just checking in...

Ok,....so as of late I have been taking some heat for not updating this blog more frequently but, if you will recall, I said back in the very first post that there would not be something new each day. I have been towing the line, getting bloodwork done, trying to stay hydrated, trying to eat well, and with much effort trying my best to avoid the hypoglycemic episodes. (which is always a 24-7 battle for me). As for the general feeling of end stage kidney disease, I am really a first-time caller. I'm not sure what to expect. I do know that there are some days when it ("it" meaning everything here) is a struggle. Other days I can stride through the day as well as anyone.

Throughout all types of days, the credo that I try to have for now is:

"How I choose to feel, is how I am".

I have more big doctor appts. coming up this month and so I will have something more to post soon.
I would, however, like to take this chance to thank you guys for checking in here. I am humbled that in the four months since I launched this site there have been almost 2000 views. That really means something to me so...thanks.
More to come soon.

The Waiting...continued...

Let's take a step back and explain the mathematics of how this transplant list works. Kidneys are offered on a point-based system. Potential recipients are assigned points based on several criteria:

• Time on the transplant list. You receive one point for each full year that you have been on the list and a fraction of a point (1/365) for each day that you have been on the list.
• Genetic match with the potential donor. The closer you match the donor, the more points you get.

When a organs are available for transplant they are offered to patients on a local, regional, and then a national level. This is done to shorten the time that the organs are out of the body. This period is called cold ischemic time, and the shorter the "cold time" before transplant, the better the organs generally work. To shorten this "cold time," the country has been divided into regions, or organ procurement organizations (OPOs). When organs are available within an OPO, it is offered to the patients in that OPO first. The OPO for my region is called "Gift of Life" and it encompasses the eastern half of Pennsylvania, Delaware, and part of southern New Jersey. When organs become available, all medical information is entered into the database, the computer system runs the list, and several potentially eligible recipients are notified. If you are first on the list, the hospital will tell you to come in, "backup" recipients are also notified and put on standby. If the primary recipient cannot be transplanted for medical reasons, or because they are incompatible with the donor, the backup recipients all move up a notch.

So there you go.....this transplant business is complicated stuff. But all things considered, the folks that are running this show have it down to a real science. 
I am thankful for their expertise and dedication.