Merry Christmas All!

Thank you for continually checking here.

For your thoughts...

and

your prayers.

May the best blessings of the season be yours.

This much madness is too much sorrow...

With everything that has happened today I don't have ANYTHING to gripe about.
All prayers for the kids of Newtown, CT.

The F word.....

Another week gone by....and no calls from Pinnacle but two more doctor appointments in.
My nephrologist tells me that things are still sliding and so this is what led me to seeing the second doctor - the fistula surgeon. Although he started out with a bit of flattery telling me that I have phenomenal veins, he was pretty quick and to the point in telling me I needed to get this done and the sooner the better.
Again, once you get the fistula, you have to wait for it to "mature" (2-3months) before you can use it for any dialysis.

Argh.

I'm kinda bummin' here.

Tentative surgery date is January 24.

52 days left to get a call.

Coming Attractions -

• Next appointment with the nephrologist - 12/12

• Follow-up at the fistula factory - 12/14

• Meeting with the Mayans - 12/21

Is out of sight truly out of mind?

Once again, it's been way too long since I've updated here but there has been a lot going on in BobWorld. I have been teaching my five classes and the last of those is tonight.
In early October, I changed jobs and took a position as chief photographer with a design firm in Lancaster. It has been a bit challenging to say the least. I've completely revamped their photo department and implemented a new photo workflow and so I've been putting in some long days.
Due to this hectic schedule, I was able to get the vein mapping done but I have not been able to schedule the follow-up appointment and subsequent........ahem......fistula surgery.
I know it's not the ideal situation, but keeping this busy has allowed me to put certain "unpleasantries" out of mind for a bit.

Yes. Yes. I know. All in good time.

There are a lot of good friends that I haven't gotten to see lately either so I'm hoping that once things settle down a bit, I'll get to catch up on all of the above.

Thanks to everyone who have been persistently reminding me to get this appt. scheduled.
As much as I gripe and complain, I do appreciate your thoughts.

I'll let you all know as soon as something is scheduled.

Up in Arms...

 

Arm Ultra Sound and Vein Mapping Scheduled for October 18.       Joy.

Argh! This is frustrating...

 

In Wait for New Kidneys, Relying on Flawed System

We don't need no education...

Dialysis education was pretty much all that I've read, re-read, and read again over the past two years only this time there were a lot more gory pictures and lot's of shiny happy people telling you how great life on dialysis is.

Then they give you a fine choice of three different modes of dialysis.

I chose door number three which is the one that is chosen by the people who don't want to have boxes and boxes of  peritoneal supplies and a machine sitting around their bedroom and then have to hook themselves up to the machine that pumps their guts full of fluid as they "sleep" at night.

Instead, I will be one of the wussies that go to the renal center 3x a week to be hooked up to a machine for 3 - 4 hours.

After this totally uplifting experience, I am being scheduled for the next adventure called
vein mapping.

Fistula surgery scheduling will follow.

If you pray....please pray that the tx center calls me before all this has to go down.

Thanks.

About-face...

OK, so after everything I have written here for the past year and a half, this is going to seem a pretty extreme swing in the opposite direction...

After some considerable emotional urging from some people very close to me and a heartfelt plea from my daughter I've decided to give the process of dialysis another look.

Ugh.

 As much as the whole deal just wigs me out, I am going to try to adapt because, quite frankly, the fuse is burning and my options are really beginning to narrow pretty quickly now.

There's a good bit to getting up and actually beginning this treatment, and so I am scheduled for my first day of "Dialysis Education" (doesn't this sound like fun?) on Tuesday.

I'll keep you all posted.

All life is...really just a circle...

Final gift: After fatal accident, transplant candidate becomes donor

What's hotter than a late August day?

.....the heat I've been taking for not updating this blog!

Ok, so here goes.....

There have been no calls for quite a while now so nothing new to report there.
I did have a nephrologist appointment last week and the doctor again expressed his concern about my current numbers. My GFR had actually risen by 1 point to an 11. Woo Hoo!
But my BUN and creatinine have also risen and this is not good.
Dr. Schendel has pretty much realized the futility of talking dialysis with me.
This time, instead of trying to get me to have a fistula implanted in my arm, he said that soon I may want to consider having a catheter put into my chest for treatment.
Argh.

On this end.....I just keep on keeping on.
I'm betting the whole farm on the one call that I hope to get from Pinnacle soon.

Thanks for checking in here.
I'll keep you posted.

And again...

The organs went to the primary candidate at Geisinger, another transplant facility.

Once again I ask you to say a prayer for the recipient and for the donor's family.

Thanks.

Déjà vu

Another day... Another call... Another 'back-up' kp offer...

Wasn't even going to post this, but just got another call to put me on standby (again) as a backup on a set of organs. It's funny, how months ago, a call like this with so much life-changing potential riding on it would have set me on edge.
Now I will just take the "wait and see" attitude.

Again, this time I am just a "back-up".
So again.... I will keep you all posted.

Thanks.

Nope.

Just got a call. The organs went to the primary candidate.
Say a prayer for them and say a prayer for the donor's family.

Thanks.

Pinnacle calling...

Just got a call from the transplant center telling me I am on standby for a kp set.
I am "backup", not the primary candidate, so I have to take this all in stride.

As always, they tell me just to "go along like nothing is happening"......right.
I'm allowed to have dinner, but nothing after midnight just in case.

Supposedly a young donor so this would be very good if it were to happen.

Stay tuned.

Further down the spiral...

Ugh. I just saw the results of my latest bloodwork and it is not good.
My Glomerular Filtration Rate (GFR) has fallen to 10. "Normal" is >= 60.
Your GFR tells how much kidney function you have. It can be estimated from your blood level of creatinine. If your GFR falls below 30 you need to see a kidney disease specialist.
A GFR below 15 indicates that you need to start treatments like dialysis or have a kidney transplant.

I can use a prayer.
Who is the patron saint of transplants???

Night moves...

Had another late night call last night and started out for the hospital......again....and then was cancelled........again.
Grrrr.

I have a boatload of bloodwork to get done tomorrow. I'm keeping my fingers crossed that my numbers are still viable.

Thanks for checkin'!

Go ahead.....take your head for a swim....

Loads of Info

A nothing sound.....

Alright, so I've been getting some grief lately that this blog went from 90 to nothing but quite frankly, that's just the way it goes.

I haven't had any exciting calls lately. No major doctor appointments (next big one is in late July).
I did receive  a call from my transplant coordinator after the last fiasco telling me to "not go very far".
I had a couple short trips planned for this summer but she seems to think that anything farther than 2 hours away is really "rolling the dice". But then, as alway, she quickly covered herself and said "Having said that, it may be months until you get another call". Argh.

And so that's where things stand as of now.
I do appreciate you all checking in here so feel free to give me grief anytime about keeping things updated.  ; )

Until the next...

Another bust....

Got the word at 1:30 that the recovered organs just weren't up to par so I'm on my way home. I gotta believe this will happen sometime but until then I feel like the boy who cried "transplant!".
Thanks for all the thoughts, prayers, and calls.
I'll keep you posted.

Sunday. Sunday. Sunday.

After a very long night, the lead surgeon just came by to tell me that they are recovering organs right now and I should know by noon but, he also said there is a pretty good chance that I may not even get these organs (long story).
I'll keep you all posted.
Give a wink to a statue at church for me today.
Thanks.

Waiting...

Nick kept me company on a lo-fi Saturday nite.
Thanks Nick.

Hurry up and wait...

Ok... all checked in here with some fine accommodations. They are putting me through loads of bloodwork, EKG's, x-rays and now the wait begins. Talked with the surgeon, it may be tomorrow morning if anything happens.

One more time around might do it....

It's a beautiful day here in south-central Pennsylvania. I just got a call from the transplant center telling me that I am number one on the list and they have potential organs. So I'm on my way there to be admitted.
I'll keep you all posted.
Please keep me in your prayers.

From bad things good things sometimes come...

I received a follow-up call from the tx center to explain exactly what happened on the 22nd.

It seems the surgeon who was recovering the organs was completely aghast at the failure of the equipment at the hospital where the recovery was done (the actual malfunction was explained to me in great detail.) so much so that he has petitioned UNOS for a referendum to require all participating hospitals to have the same standard set of tools in each operating room for organ recovery.
I am told that until this measure is passed, Pinnacle doctors will now travel with their own set of surgical instruments to do the recoveries.

So for the silver lining in this cloud of misfortune it is the thought that new standards will be set to ensure this won't happen again. Also, the donor pancreas did not go to waste but rather the islet cells were taken to use in islet cell transplantation and research.

This young donor's organs saved at least six people and gave sight back to two.
How awesome is that?!?!
May God bless their family for this altruism in light of their tragedy.

Small Faces

More breaking news info from Kara... FB Donation.

I don't even do Facebook but if it helps with organ donation awareness.....

So what's going on?

And so a lot of people have been asking me just how the events of this past week could have happened and all I can tell them is what I've said here from the beginning -

"There's a lot to this transplant stuff."

The whole procedure is very intricate from the beginning (recovery of the organs) to the end (finished transplant).

Kara recently gave me a link that details the procedure:

Simultaneous Kidney / Pancreas Surgery

It helps to put the whole operation into perspective.

There are others on the Additional Reading page.

Thanks Kara!



Perhaps the dream is dreaming us......

Dreamlike. That's what yesterday seemed like. I remember looking at the hallway ceiling as I was being wheeled to the operating room, after saying byes to my kids, and I was thinking "So this is it. I never thought this would actually come to pass".
Now lo and behold ...it hasn't. Not just yet anyways.
Today I felt really, really, rundown and just couldn't get it out of second gear.
Just mentally and physically exhausted which is kinda weird 'cos I sure wasn't doing anything "physical" yesterday.

I really, really, want to thank everyone for all the calls, texts, thoughts, and prayers.
I have the best bunch of friends that anyone could ever hope for.

3...2.....1....Hold it!

AAAAAARGH! Yes, this is yours truly.
I was prepped for surgery, given meds, said goodbyes and love you's to my kids....was wheeled to the operating room where I was being instructed by the anesthesiologist as to what was about to go down and.......BOOM! Another surgeon came in and said that the pancreas had been damaged and there would be no KP transplant for me today.
Talk about an emotional rollercoaster.
I am exhausted. I will sleep very well tonight.
God Bless all of you. Thank you for all your thoughts and prayers.
It just wasn't my time.
More later.

Its a go. Operating time has been bumped up to 6pm. Wish me luck. See you on the other side.

Update...

They are in the process of recovering the organs right now and I am a perfect match so this looks like a go. They plan to take me to the OR at 8pm. Surgery is to take 4 to 6 hours and then i'll spend some time in ICU. It's gonna be a long day. Kara will be updating here as things go on. Thanks so much for your thoughts and prayers.

Just admitted. Going through boatload of tests and lots more bloodwork.

11:20

OK, so that is so 30 minutes ago.....they just called back and want me to come in right now so they can start the bloodwork. Yikes!~

And Here We Go........

I got a call from the tx center at 10:50 pm tonight and was told to report to the hospital tomorrow at 7:30 am. They have a young donor and I am first in line this time. I was told not to eat and to bring my things. It's crazy, I have so many thing up in the air right now with my classes and all, but I suppose I can't really be a chooser. I will update here as I can.
Please keep me in your prayers.

Thanks.

Deeper Things...

 Blurring the Lines...

This audio interview is taken from 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.

Feel free to let me know how you feel about this.

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

Nothing changes without blood flowing...

After another boatload of bloodwork last week, I have an appt. with my endocrinologist on Tuesday, the 13th and another appt. with my nephrologist on 3/29.

Thanks to everybody for all the good wishes. It's appreciated more than you know.
Think positive!

Just got the word that the primary candidate was successfully transplanted. So they will be waking up today with new organs. I wish them well.

And 12 hours later...

Just heard back from the tx center telling me to eat a lite dinner and then nothing afterwards. I am a match with the donor but I am only the backup. The primary candidate was a perfect match too and will probably get the organs however it wouldn't be the first time if they brought the primary candidate in and then decided against them getting the organs.

A final decision won't be made until much later tonight, as they weren't even scheduled to bring the donor into the operating room until 8:00pm.

And so the high anxiety continues.
I'll let you know when I know.
Thanks.

A bit of that déjà vu feeling.....

At 7:30 this morning I got a call from Pinnacle once again telling me I was a backup prospect for a SKP transplant.
They told me they had plenty of my blood and asked for my permission to do the cross matching.
I was told that the organs were from an 18 year old donor and that the lead surgeon thought these would be great organs for me. I was also told that I was in the first choice slot at Pinnacle, however there were other prospective recipients at  two other centers that were going to be given first consideration.
And so now, it's once again, a waiting game. Once again I'm to "just go about my day just like normal".
Right.
That's it for now but I'll keep you posted.
Until then ....say a prayer for the family that lost an 18 yr old.
Thanks for checking in.

No news is good news so here's the news.....

I had my appointment with the nephrologist on Thursday and received word that my GFR is now 14.
For those of you that just tuned in - that's not good. I am officially "underwater" now as when you hit the GFR 15 mark they want you to start dialysis.  Ugh.

Speaking of water,...in some kind of strange paradox that would surely interest Rod Serling, it is winter and my hands have been excessively dry this year and yet evidently my legs and feet aren't. They are swollen with water. A couple extra pounds of water according to the scale at the doctor's.
This swelling is really noticeable when trying to put on shoes and with things like deep knee bends.
And once again - blame the kidneys.
They have given me a diuretic to help get rid of some of the water (water that they tell me to drink copious amounts of) but only in very small doses as the diuretics are very hard on.....yeah....you guessed it.... the kidneys.
There are a few other hallmarks of the disease at this stage but I'll spare you those details.
It's all one big plate of frustration with a side dish of aggravation and a cup of depression to go.

The doctor wants me to get another boatload of bloodwork drawn and he wants to see me in a month (rather than the usual 3 months).

Kevin and Glenn - no worries - heavy legs make the pedals go 'round.

I'll keep you all posted.
Thanks for checking in here.

Blessings...

Through what can only be explained as a cumulative effect of various blessings I am now back with credible health insurance.
I went to the corporate offices of Highmark and after an hour long meeting found a plan that I hope to live with for now. After doing this, I informed the tx center about my new coverage and explained that although I understood their position, I was really rather perturbed at how they handled the whole thing. I simply said that if I am straight up with them, then I expect no less in return.
So after considerable badgering with them we've come to détente.

Tip of The Day: If you don't have health insurance - don't dare get sick.
If you are fortunate enough to have health insurance - thank your lucky scars and do whatever you need to make sure you keep it.

it goes....it goes....it goes....like this....

No health insurance means no way of supporting a transplant - before, during, or afterwards and so I was told this morning that I am currently in tx limbo.

Sign me...
Desperately Seeking

Close but no cigar.......

Just finally heard back from the people at Pinnacle and found out that I was a perfect  match for the organs......but so was the person that was ahead of me on the transplant list.
That person received the SKP transplant and I wish them the absolute best.
It's very cold, but sunny here today and at this juncture  I can only imagine waking up on a beautiful morning like this with the firm belief that from this day forward you are going to get better....and feel better. 
That's my hope for the person who received these organs.
That's the hope that I continue to hold onto.

Thanks for checking in.

A New Year.....and here we go....

Just got a call from the tx center and they are currently cross matching my blood with a potential donor so once again I am waiting in the wings. Told to just go about my day and they will get back to me.

However, every silver lining has a touch of gray.....I was dutifully advised that these organs are from what is termed a "high risk donor" but I signed a form in the past saying that I would want to be considered for such organs after being advised as to what determined the high risk.
At this point in my life, I am well aware that beggars can't be choosers and so I'm throwing my hat into the ring and we'll see how it goes.
That's all for now.
I'll keep you posted.