#HOME

Just got the word from my nurse that blood looks good. Still pushin' some very lo grade heat but my Amylase & Lipase levels are normal and I'm heading HOME.

                             Joy!

Transplant reality is fluid...

By that I mean it's success ebbs and flows with tests, with numbers, with observations, and yes.... with fluids too. 

This morning, the ever important fluid and the biggest bellwether of the state of this success is my bloodwork that was drawn at 5:45 am. Before that, they had already weighed me, Dr. Yang examined me, BP & heart rate were recorded and counter to yesterday - all of these things went very well this morning.

All numbers were just were they should be. And I am actually feeling better than I had yesterday. 

Now if I get back a good report from sweet Ms. Andrea, the phlebotomist, my ticket will be punched and I'll be on way way home again today. 

However, despite all other systems being green-to-go.....if the bloodwork comes back with some less than desirable results, M614 will be home for another day. Today is August 31st, and Pinnacle has been my primary residence for 27 of those 31 days.

I should know either way in a couple hours.

In retrospect, I'm sorry for all the bellyaching I was dishing out after being shut down yesterday. I need to firmly realize, as my friend Jan has told me, that

this is to be expected. This is just one element of my new life paradigm.

I tend to get a little bummed and recently even fret a little at the mention of the 

"R word", but these people here have seen it all before. They tackle the problems aggressively, succinctly, and in no time turn things around and the train is back on track again.

PATIENCE!!! Patient Bob! -  It's just never been my biggest virtue.

So thanks for ALL of your continued encouragement, comments, and texts.

I would not want to think of doing this without you all. 

Thank You.

I'll let you know when I hear the "yea or nay" of the test results.

Heaven knows if there's a ceiling....it comes so low with the kneeling....

Well here it is....another Friday and Bob is not going anywhere but crazy today.

After a semi decent night of "sleep", the crew came in this morning at 5:45 am to draw 8 tubes of blood, check my blood sugar, weight, BP, and heart rate.

My blood glucose was perfect, but my weight had gone up almost 4 lbs - Red Flag.  My BP and heart rate were extremely high - Red Flag. Then my bloodwork came back and once again my Lipase is very high (from 15 yesterday to 127 this morning) - Killer Red Flag.

So, of course, there is no going anywhere for me today and maybe not tomorrow.

Argh.

They have started me on another 500 mg of  Solu - Medrol and they are cranking up my steroid dosage in my pill allotment making all kinds of changes to try to beat this down. Dr. Yang says that this does happen and he is not too concerned. He knows how frustrated I am but he tells me just to hang in there and frankly, I really don't have much other alternative. 

They are trying to relieve my discomfort with limited Percocet.

Again Dr. Yang and Deb, my tx coordinator, Dawn, and the whole team tell me that "this happens". That the pancreas is sooooo much more touchy of an organ, that you really need to baby it along until a happy medium of meds, organs, and imuno-system are reached and this make take up to three months.

They have all been even more extra nice to me this morning because they know I'm sorta kinda bummin' here.

That's it for now. Just going to try and get into a Zen mode today and keep the lid on this additional Solu-Medrol.

Have a fine Friday. 

It's a one time thing.... It just happens alot....

After the big scare this week and the mumblings of the dreaded "R word", the seven million blood tests, blood cultures, ultra sounds, chest scans, and other CT Scans, the flood of antibiotics IV's, and the 1500 mg of Prednisone, (whew!) the results this morning were all pretty much normal with the exceptions of a few small issues such as (in a complete flip of the past 15 years) I now need MORE protein in my diet, I need more albumin, more iron, and most of this is addressable through diet. 

    My Stat Blood Lab Order on Tuesday

My white blood count is still a bit high, but no fever for the past 24 hours. There is some accumulated fluid around both of the organs but none of the docs seem too concerned about this and expect it to be eventually absorbed. As far as the elevated Amylase & Lipase levels the doctors have a few possible theories but without any one smoking gun these are only possible culprits. 

Now my tx coordinator, and my tx "Coach" Jan, whose guidance has been invaluable throughout these past three years, have both told me to expect these

occasional blips on the road to tx recovery almost to the point that they are dang near inevitable at one time or another. I'm just looking at these last two visits here as two of my blips right outta' the gate and now I'm looking forward to some smooth road for a stretch.

God willing.

The main point to keep in mind through all of this craziness is that the two new organs continue to function fantastically.

Even with all the Prednisone my blood sugar has not gone higher than the 140's

and my creatinine is .09.

Today has just been a wait 'n see day.

Dr. Yang was in first thing this morning and after explaining my tests and fielding my questions he explained that he wanted to be reasonably sure that when I leave this time that I won't be back within a few hours. So he has pulled me off all IV therapies, continued everything else, and I am being watched, monitored, and tested to be sure the fever doesn't come charging back, heart rate and BP stay in check, etc.. So I'm walking around the floor (not many steps like home) but then just taking it easy, just like home. 

Now if no ugly monsters raise their heads

even without all the IV meds and all systems stay green then possibly I may get to go home tomorrow. Maybe.

If only.

So you know what I know and the definitive word will probably come early tomorrow morning.

I'll be sure to let you know

It's been a very busy morning....

So far today I've had more bloodwork done, an ultrasound of my abdomen,

had a visit from a eucharistic minister, 

and visits from Deb, my transplant coordinator, Dr. Waybill, the chief nephrologist from the transplant team who brought 2 of her students with her,

and a visit from Dr. Diamond, the hospital's nephrologist and one of his residents.

So here's the news - my fever seems gone. My amylase and lypase levels are back to NORMAL and Dr. Waybill tells me that Yes, elevated levels of these are often the precursors of organ rejection but when that happens it takes at least 2 or 3 days of meds to bring the levels to where they should be. Because mine came back to normal in such a short time they're not as concerned with the dreaded
"R word."

So to further investigate the cause of the fever and night sweats that I've been having Dr. Waybill is ordering a CAT scan of my midsection. These folks are nothing if not thorough. I can't have any lunch today (and these dang steroids make me ravenous.) and the plan to give me a dye contrast by both IV and a drug by mouth that I need to drink that will protect my new kidney from the effects of this dye that Dr. Diamond say's is quite nasty tasting.

They have also heard a small rattle in my lungs so they are sending for another chest X-ray.

The tremors that have been pestering me have definitely eased. And with the fever gone as of right now (fingers crossed)

 I am feeling "pretty good" this morning.

Thanks for checking/caring.

I'll update here as the busy day goes on.

I Have a Dream....

Commemorating Dr. M.L.K.'s famous speech on this day and in my small slice of the cosmos -

I too, have a dream.....
 

• To beat these nagging problems.

• To make the absolute most of these 

   new organs that I've received and   

   honor my donor with the rest of 

   my days.

• To continue to cherish all the time I get  

   to spend with my family.

• To laugh in the sun with my friends and   

   to run in the rain

First bag of steroids...

It's not alright now....

So when the tx center called me back this morning they said they wanted me come up immediately and after a big boatload of yet more bloodwork it's been determined that my amylase and lipase levels are through the roof. This along with pain at the organ site and my fever are the first signs of possible rejection.

I am being admitted yet once again and the plan is to pump me full of massive doses of IV steroids.

I cannot even begin to explain how flippin' bummed I am.
To be back in the hospital yet again on such a beautiful day, not to even mention the possible dreaded "R word."

I'll post more when I can.

Tell me why.....I don't like Mondays....

I went to bed Monday night and things were ok but then I woke at 3 am shaking like a leaf in a wind storm.

My temp is 102.8.

My BP is 157/91.

My head is throbbing.

And my heart rate is 122.

I called the tx center and left a message.

I'm becoming a real P.I.A..

So what's up with Monday night into Tuesday? Every Monday night since the operation something has gone south.

Grrrrr.

I' M TRYIN' TO GET WELL HERE!!!

So another beautiful warm August night and I'm laying here in a tee shirt, sweat shirt, under a blanket, and a down comforter.

I took 2 Percocet, because they contain Tylenol (for the fever) and hopefully that will let me sleep.

I'll let you know what I find out in the am.  

Knowledge speaks but Wisdom listens...

I had clinic this morning.

(Again this is back at Pinnacle and it's where I get examined by the doctors, have blood work drawn, talk to the nurse and transplant coordinators and anybody else that I need to see.)
 

I'm still fighting a low grade fever but they told me not to worry about it unless it gets above 100°.

This morning I had another problem that I've had several times since the transplant and that was shaking or what they call "tremors". It's really kind of disconcerting because my hands shake like I'm about 100 years old. Hard to drink your tea in the morning when you're having something short of a grand mal seizure.

To that end, they made some significant changes in my medications today as they believe the tremors were caused by too much of the steroid called Prograf which they've reduced today.

Because they reduced this steroid they had to increase one of my other steroids called CellCept to cover the bases.

Today they also stopped my Ceftin, increased my K-Phos, and increased my Metroprolol. (Three of the 19 meds that I'm currently on.)

So it is a fine balancing act between all of these drugs and this is the fine-tuning part of the program.

At home here the pain at my incisions is a little more significant than in the hospital but that's ONLY because I am walking more. At the hospital I tried to walk several times each day around the sixth floor but then I went back and either sat in a chair or went back to bed. 

Now I'm walking around my house everywhere and up and down stairs. So this is a good pain - pain from using my abdominal muscles. (Remember I have two 10 -12 inch incisions, one on each side that's like a J and a backwards J they come almost together below my navel to form something like a big smile.)

Yeah. T.M.I.

So here at home, rest assured I've been doing absolutely nothing strenuous so those of you who said to "behave" or "take it easy" or "just chill" - trust me, that is exactly what I'm doing. 

If you don't believe me I'll set up a Skype link and you can see. It's about as exciting and fast paced as watching paint dry.

The chief nurse at clinic summed it up this way this morning when she said:

"I didn't get the transplant to live for the organs - I got the organs transplanted to live."

So that's about it for now from here.

Thank you for continually checking in here. 

I will continue to post during this recovery.

Homeward Bound

Dr. Yang was just in and he's sending me  HOME!

Joy !!!

He wants to see me in clinic tomorrow, but this time I've been cleared to drive myself.

"Home, where my thoughts escape, 

at home, where my music's playin',

Home where my guitar lies waiting...

silently for me"

Thanks for all your company while I've been in the hospital.

I'll post 'ya from the 408 soon.

And I Hope That The Red Sky at Dawn Today Don't Mean a Thang !

Wake me when the day breaks. Show me how the sun shines....

Good 'ole Sunday morning here at M614.

It's still before dawn but after a pretty uneventful night.

(Or as uneventful as they are in the post surgical ward of the hospital) my fever has remained lo-grade, all my other vitals are good, and after 22 days in the hospital this month, it looks like they will release me today.

Not sure when Dr. Narins will be in but he is the defining word.

I'll let you know.