I need to de-program.

Although I was treated with the best of care by the most friendliest and expert people, it is so good being home.

I was really, really, looking forward to sleeping in my own bed. It did feel so great to crawl in under my fav blanket, with my fav pillows, with my windows up I could hear the nocturnal symphony of locusts, train whistles, crickets, and ummm...... "tree frogs." Yesterday was a big day both physically and emotionally and I was beat -looking forward to some serious recharge time. But instead it was like I was still in "hospital mode."

I went to bed at 9 and although it seemed weird not being hooked up to my 9 pm IV, it felt good crawling in after doing my new required nightly routine now of gulping 19 pills, weighing myself, checking my blood sugar, blood pressure, and temperature just like at the hospital.

It was odd that, although I have forever slept on my left side, (now known as the "kidney side") I was now attempting to sleep on my right side (now the "pancreas side") as I had done on occasion in the hospital to facilitate the two JP drains that they had draining fluids from my abdomen. Weird.

I drifted off for a bit but woke at 11pm to use the bathroom (and wait for the nurse to change my IV and give me my a shot of Atavan ???)

Then some fitful tossing and turning 'til midnight or so ( as I waited for the patient's aid to come and check my vital signs ???)

Sleep finally came, but again at 2 am,so did nature's call. 

Grrrr.

Then at 3..... Boom!, Awake! ( and waiting to have 4 tubes of blood drawn and my vitals checked again ???) 

What the ???

At 4 am I was awake like clockwork 

( and ready to get out of bed to be weighed by the aid.....???)

Now I lay here, eyes wide open at 6 am,

waiting to have my vitals checked, meds given, IV's changed, and doctor's visit).

Argh.

Morning came a little early today - woke me up when I wasn't ready..... 

but at least as I lay here, I can listen to the birds singing and the world coming into play outside and not hear hospital code calls and IV machines beeping.

And I am thankful.

It's gonna be a good day.

I just need to re-program a bit.

Now I'm on my feet again.....better things are bound to happen.....

After some more hard core medication education from Deb Holibaugh my superwoman transplant  coordinator, a visit from Dr Yang and several other doctors then,at 3:09 pm today, August 16th, 2013, they unhooked my last IV, and closed this chapter of my saga.

I said goodbyes and thank you's to all my wonderful nurses, aids, and staff and then Nick and my Dad brought me the 27 miles home. 

It was the sweetest ride on the most beautiful day and my home never looked so good. I dropped to my knees and kissed my front lawn. Kara had the house all "Welcome Home" decorated with balloons, banners, flowers, and cards.

I am such a lucky man. 

Lucky for all the obvious reasons but also for the family and friends that God has blessed me with. 

In my book... YOU ALL ROCK!

Now I go back to the tx clinic every Monday and Thursday for the next 3 months for bloodwork, any med adjustments, exam, and consultation.
 

As I've said before - there's a lot to this transplant business.
 

Once a month for the next three a nurse will come to my home and run a two hour IV on me.

Thus begins my new life paradigm.

Sounds pretty dang hectic and yet I am SO very thankful.

Thank ALL of you for everything prayed, done, and offered. I will never be able to repay everyone.

I am so humbled.

I love you all.

    Deb helps me figure out my meds and       

    dosages.

                 My Recovery Crew

    Aileen, my last nurse and crazy    

    coincidentally wife of Alekh, my last 

    ICU nurse.

    Cutie nurse Chelsie, the nurse who

    checked me in back on August 1st.

        Sign in elevator on the way out.

So now just FYI, although the high drama

is past (we hope), If you continue to check here from time to time I'll be sure to let you know how this recovery is going.

Ultimately, I'd like to use this blog to help others. 

So don't write me off.

I gots work to do.

Thanks for being here.

Bob

Waiting for the dawn.....

........of my last day in the hospital.

    Theres too many shadows in this room...

It don't seem fair for days to just disappear....

This has been a very busy day as everyone here rushes to cram in all the

Information that they know I'll need in my

new life paradigm.

After I saw Dr. Yang this morning, and after several more blood tests, I had a great visit with my friend Judy, then I met with the dietician to go over foods etc., then I had a two hour season with the post transplant coordinator getting schooled on all the ins and outs of the truckload of meds that I'll be on.
Two mre blood draws, then Dr. Diamond the nephrologist stopped by to tell me how good both organs are working and to wish me the best.
Then Dawn, my favorite social advocate from the team paid me a visit, followed by a hospital pharmacist to see if I had any questions on my meds.
 

The "highlight" of the afternoon came when nurse Cathy pulled 22 inches of JP drain tube out of my gut. (Definitely not for the squeamish.)

My JP drain. All of the white hose was inside.

 

Physical therapist Irene came by twice today, first for an evaluation then a second time with a regiment of exercises for me to do. I had a nice evening with great visits from Kara, Kathy, & Rick and Lisa.

                    Evening Meds

Then tonight two of my fav nurses from the sixth floor Cassie & Heather who treated me really well last week signed on with me tonight and treated me very well on this my last night in 614.

The people of this hospital have been the utmost in professionalism and as nice as as anyone could ever wish to have.

They all have my most heart felt thanks.. 

               Bob, Heather & Cassie

I'm in repair....... I'm not together but I'm getting there....

So........ The Yin has met the Yang.

Dr. Yang was in first thing this morning and said something about my great blood numbers, then he mumbled something about how great my organs were doing, then he said something about drugs.....and then......very clearly.....quite pronounced and very vocal......he said......  

     YOU'RE GOING HOME TOMORROW !!!!! 

                         JOY !

Gonna' be a good weekend baby!

More here later!  : )

Nick, Bob, and Kara out for a walk on the 6th floor.

Where all the cool kids hang out...

                                                                    The New Digs

Pano of M 614

 

 

                                                My Dad Skypes with me in my new room.

The Whole World Will Be Different Soon....

It's the sweetest thing.... 

My ICU nurse Alekh just came in and told me that after

receiving the blood I did today and the following testing that was done - Dr. Yang has deemed me well enough to leave the ICU tonight after dinner.

Woooooooooo Hoooooooooo!!!!!!!!

I'll let ya know about the new digs once I get moved in.

ICU has been an experience to visit but I have crossed it off my list now so from this day forward....

Pictures From afar..... last day in ICU

Please s'cuse the hair.

Saying goodbye to Kacie

...and Alekh.

Hump Daaaaaayeah!!!!

Hoping that today we have crested the hump!

Thanks Michelle!

I'm a sign......and you can read.

Dr. Yang was just in.

My blood numbers have risen considerably. White blood count is down.

He likes what he sees. So much so that he told me he wants me to stay in ICU for a little more blood today and observation and if all looks good tomorrow morning

I will be moved to a private room.

And barring any further relapse, I may be able to go HOME on Friday!!!!!

I cannot tell you how great of an outlook this puts on my day.

And I cannot tell you....nor prove to you in any greater fashion, the power of all the prayers, good thoughts, love, and concern that - you, my family and friends have bestowed upon me during this ordeal.

My friends are all individuals with varying views of God and many pray in different ways. Some of us are "old school", some are more free thinkers, there are Catholics, Methodists, Unitarians, Presbyterians, Jewish folks, and few may only admit to a "Power of the Universe",

Irregardless, you prayed on my behalf.

I see this as testimony. I am your sign.

I very humbly thank you . 

God is good.

I  praise my God.

Morning Has Broken and Well Maybe I Can Live Through This...

Ok....goin' out on the optimist limb here today but this is the first morning that I have not woken to a bloody Quentin Tarrentino'esque scene in bed.

Joy!

Hemorrhaging came to a slow halt following dinner last night. I took advantage of some pain meds and some Atavan last night to help me sleep and that worked wonderfully.

The peripheral line in my arm is also working quite well. And my white blood count, with the help of the hard core antibiotics, has fallen back to an acceptable range.

They are still planning to give me more blood products today to hedge their bets. And so I want to thank any of you from the bottom of my heart if you've ever donated blood.

Literally, Blood Donation Does Save Lives.

My dad has been a mega gallon donor all his life and my three children have followed in their Pap's footsteps and become donors as often as the time restrictions allow.

I could not be more grateful and forever proud of all of them. 

The Docs should be making rounds here shortly so I'll let you know where we're headed.

Thanks for checking on me.

This Broken Wheel is Coming Undone....

Dr. Yang was in this morning - all cool, calm, and collected. He assures me the hemorrhaging will stop. To lower the risk of possible infection (remember the elevated white blood cell count?) he is having my central line that was surgically put into my neck removed today and starting a large bore peripheal line into my arm.  This will be the new way I will be receiving all further blood, meds, etc.

And the units of blood, plasma., and platelets just keep coming.

Just more stuff.

I'll let ya know how it goes.

The Poison Is In The Dose....

Now with all the blood products being massively pumped into me..... I have broken out in a all encompassing "rash" that feels like fire ants feasting on what's left of me.

It's going to be a loooooong night.

Grrrrrrrrrrrrr.

Darkness Comes In Waves....

The blooding is back.

With a vengeance.

So far tonight they've given me:

• 2 Units of Blood

• 4 Units of Plasma

• 6 Units of Platelets 

And it's only 1:30 am.

All of this is not very conducive to good sleep.

I hope you are all resting well.

One more sun comes sliding down the sky...

Day 12 here at The Pinnacle again finds Bob still residing in the ICU. 

Today I was lucky enough to get Deb the ICU whiz back as my nurse and one of the first things she noticed after coming on duty was that my BP was again way too low and heart rate was way too high so just like Alisha yesterday she was quick to call the doc and get things resolved. 

They are good here.

The drug therapy started yesterday seems (very cautious optimism here) to

be working as the bleeding, although not 

completely stopped, has definitely decreased.

On the slight downer side is this BP / heart rate thing and the fact that my  white blood count took a leap today and

this can be indicative of infection (which would be horrible as I am soooooo  immuno-depressed right now).

So they are putting me on some more

hard core antibiotics.

I have super high hopes to transferred  

out of ICU and to a regular room tomorrow. I was told today that NOBODY goes from ICU - straight home.

So I suppose I'll have to serve some time

in the regular hospital. 

Argh.

Serious cabin fever here.

Thank you to everybody who has been

checking this blog, sharing comments,

thoughts, and prayers.

I am a very lucky man to have you all in my life.

Quiet Stormwaters

So the bleeding is happening at the anastamosis of the pancreas to the rest of the system.
They are doing their best to treat the problem "medically" (as opposed to surgically).
There are several invasive options but the docs really don't want to follow those if at all possible.
So they are "hooking me back up" to what I consider some damn invasive apparati and they have given me more plasma, more platletes, and are trying a rarely used therapy known as cryoprecipitate.

And a very heavy dose of  albumin.

A protein compound to help keep blood nutrients running though the blood and helps prevent these
nutrients from leaking out through the tissues.

Dr. Yang is to be back tomorrow.

I will miss Dr. Ottmann as he goes back to Walter Reed Medical Center in Washington tomorrow.

He has been spectacular.

So has been my ICU nurse Alisha today.

She has gone far beyond  her call of duty to ensure my wellbeing and comfort today.
I cannot say enough about this woman or thank her enough.
Alisha was a Godsend today.

 

                   ICU Nurse Alisha and Dr. Shane Ottmann discuss my next course of blood therapy.

I feel that I am in good hands here.

My family has been very supportive.

And I've been showered with good thoughts and prayers from everywhere.

Thank you.

Here We Go

Scan time.

 

My ICU nurse Alisha gets some the equipment together that I need to travel with to the scan department. - I'm not traveling very light these days.



It's not suppose to be like this...

So this morning, as previously posted, I felt like hell and when my new nurse came on she took a very vested interest.

She alerted the Rapid Response Team which brings all kinds of people to your room. Drs., additional nurses, blood people, etc. My BP went super low, heart rate was super high - not a good scene.

They again put me on fast infusion of yet 2 more units of blood and 2 more of platelets. They are taking me for another blood scan shortly. A 1.5  hr scan.

Dr. Ottman has been great. I mean he has been great! He has even called Dr. Yang in France for a consult and  he now thinks that a super boost of platelets may be the ticket.

While he continues to be supportive, he also told me this morning that they can't continue to transfuse me forever. So the time is coming for some sort of decision.

The staff here have ALL been uber awesome. But I'm beginning to see deep concern in their faces. 

I will not lose my faith.

It's an inside job today. 

If ya got an extra prayer...

I'll be sure to pay you back.

Stop this train...I want to get off and go back home again.....

Last night I went to sleep feeling so good.

Numbers were all good.

And the hemorrhaging had all but stopped.

Yesterday with the help of nurse Deb, Travis & Kara,was my best day in ICU so far.

I was really cautiously optimistic that I hand "rounded the curve".

But overnight all the bleeding returned and as much as I hate to even admit it to myself this morning - I feel like death warmed over.

Argh.

Waiting to see what the good Doctors have to say today.

B