Merry Christmas.....and Thanks.

I want to take this opportunity to wish you all a wonderful holiday season!

May peace, comfort and joy be with you all.

My Christmas came a little early this year, namely on August 2nd.

I am forever thankful.

I'm also thankful for all of my friends that have been with me on this ride. 

Thanks for checking in here, for thoughts, for prayers, for caring.

May 2014 be a good year for all of us!

Happy Happy!!! Joy Joy!!!

After the ultra-quick bloodlabs this morning I went to clinic and met with one of the tx nurses and she told me....

"Merry Christmas! 

Your WBC is rebounding on it's own!"

Although it only went up .4 to 3.0, which is still below normal, and they can't tell me what causes the flux, right now it's inching in the right direction. 

Wooo Hooo!

I'll take it!

They said they will continue to keep a close eye on it and that they'll see me back at clinic on January 2.

Christmas came to me this year on August 2nd, and today was just a little yule tide nod reminding me to enjoy it.

I will be doing a year-end wrap up post here in a day or two but until then I'd like to wish everyone who bothers to check this blog the happiest of holidays, a most wonderful Christmas, and a healthy and happy New Year! 

All I want for Christmas are some White Blood Cells.....

So......I was a bit reticent in not posting that, in fact, after I became the $12,000.00 man, my white blood count (WBC) did rebound to a whopping 4.6 but as of the latest blood labs on Thursday it has again fallen to below normal.

And again, they tell me this translates as very little immune system. I received a call from the tx center late this afternoon  and they want me to come up to Pinnacle first thing Monday morning to have stat blood labs drawn, then come to clinic so they can check me out and perhaps give me another shot of Neupogen.

Low WBC's are not all that uncommon 4-6 months post transplant, as your body tries to adjust to new organs and at the same time puts up with and adjusts to the myriad of drugs that you need to ingest at least twice a day.

And so I'll see what Monday brings.

I already told my post transplant coordinator that spending Christmas in the hospital is not even an option.

Stay tuned.

I'll let you know what I find out.

Thanks for checking here.

HOLY RIP!!!

OK.....Here is an update that just blows my mind.......

The tx team at Pinnacle had told me that they wanted me to self-inject another shot of this Neupogen tomorrow at home and so they were going to call it in and have it overnighted to my house.
Well, as is often the case, several insurance entities got involved and although I agreed to the copay of $95.00 there was still some insurance problems as to whether this was "medically necessary" ..blah..blah..blah.
When I asked the folks at Pinnacle just how much the complete price of the injection was, I was told that each injection cost  $6,000.00

Uhhhhhhhhhhhhhh Yeeeeeeeeaaaaaah.

So the final outcome, and to work around the insurance conundrum, the transplant team is going to have me travel back to Harrisburg tomorrow morning give me the injection in the hospital and all will be settled and all will be good.

And I damn well better be $12,000.00 better by Monday!

I will light a match this morning......

This morning, after all the required check-in work, they took me to a section of the Harrisburg Hospital that I haven't been in before called Transitional Care. After a few minutes a very nice phlebotomist named Margarita (I like that name) came in and said "Oh I remember you! I told you when you were upstairs that you have great veins! And you said that I probably say that to all the guys.

That's how I remember you."

Uhhhhhhh. I'm getting a reputation here.

So........I got the neupogen injection and now the bloodwork results are back and my WBC has fallen to .6 this morning. 

In effect - this means that right now I have very little immune system function.

Ugh.

But after the use of some of my strongest persuasion skills Steph, my tx coordinator, said I could go home IF  I get rest, IF I'm super diligent about staying out of crowds, IF I'm diligent about sanitizing my hands, and IF I'll give myself another shot of the neupogen tomorrow.

Sounded like a deal to me, so me and the Purell are staying pretty tight and thankfully I'm headed home for the weekend.

Thanks for caring enough to check here.

Then as it was.....

So I've heard from a couple people who think that maybe the thrill is gone after four months since the anniversary of my transplant came and went on Monday without me publicly making mention of it here.
Rest assured, the second of each month still gives me reason to pause to reflect on what was going on at certain hours of that day and to appreciate all the progress that I've made since.

I didn't forget to post on the 2nd, it was just that I was waiting to see what I was told at clinic today.
I had my usual blood labs drawn at 7:30 am on Monday and by noon the transplant center was on the phone telling me that my white blood cell count (WBC) had really tanked.
The normal range is 4 - 11
Two weeks ago mine was 3.1
Monday it was 1.6
Today it is .8

This has them a bit concerned and so they have completely stopped two of my meds, started me on another antibiotic, and are having me return to Harrisburg again tomorrow for another round of stat blood labs to see if it has fallen any further and also to get an injection of  a drug called neupogen.
Low white blood counts leave the body open for all sorts of infection and my transplant coordinator warned me that if the bloodlabs tomorrow show that my WBC has continued to fall that I will be admitted
on-the-spot for more intensive treatment.

Argh.

I seriously hope I'm not posting from the sixth floor at Pinnacle tomorrow at this time.

Thanks for checking here.

The sun shines.....and people forget...

No matter how it is said..... 

I.... You.... We.... ALL OF US...... 

Have so much to be thankful for.

Take a moment to ponder this on this given holiday and give thanks to the deity of your beliefs.

Changes fill my time.....and that's alright with me....

I had more bloodwork done this morning and about midday one of the transplant coordinators from Pinnacle called and said that I am to reduce my Neoral, or Cyclosporine, levels as soon as they can get the new dosage overnighted to me from the pharmacy. So I will be dropping from those whopping big 100 mg gray bombs to 3 - 25mg caps twice a day. I think this is sorta-kinda good as this was the direction that Dr. Yang had suggested taking things in three weeks, depending on blood results, with the hope that lowering this drug may further help with the tremors. I'm down with almost anything that's moving toward that goal.

Although my hemoglobin and hematocrit levels are still pretty low, most of my other blood levels are in acceptable ranges.

More tuning.

And in the end....

Today was my last installment  of the Cytomegalovirus Immune Globulin IV.

With a little bit of pre-IV Tylenol and Benadryl, the chills were kept to a minimum this time. So although I still take a very pricey drug called Valcyte twice a day to protect against CMV, the IV portion of the program is over.

With the new drug that I started 10 days ago the tremors have gotten a wee bit better at times. And as I was out to dinner with some friends last Saturday night I noticed, quite unbelievingly, that for the first time since the surgery, I was as steady as a stone. Then, much to my chagrin, Sunday I had the tremors back full force.

At clinic yesterday Dr. Yang actually seemed excited to see me and find out how the new drug Neoral is doing controlling the tremors. I told him that I've noticed a small, slight improvement and this was all it took to make him happy. This and the fact that the results of my blood labs on Monday were excellent. He had been concerned that changing this primary anti-rejection drug might cause things to go south and was super happy to see that all my numbers were still good. Now he wants to continue to watch my blood numbers and, if they hold, in three weeks he wants to lower my dose of Neoral to see if it continues to diminish the tremors.

The "Fine Tuning" portion of our program.

That's how we're finishing the first half of this month of November.

Thanks for checking here.

Dang!!!! Flippin' ARGH!!!!

                                                              REJECTED.

                                                       Bob is not a happy boy.

In a rather revolting development the oral surgeon Dr. Seitz took a  "Whoa Nellie!!!" mindset after learning that I'm only 3 months post transplant.

 He took a quick, very cautiously quick look and said: "I'll give you some meds to deal with that for now but we are going to try everything we can to wait for the customary six month time after transplant to do any removal."

After all my work to get myself in a zen-like state and after all the prerequisite, pre-event antibiotics. Dang.

The tx center hadn't been real happy that I needed tooth removal right now stating that everybody's mouth (and BTW-TMI) is just a virtual vat of infection waiting for an opportune moment. This, along with my rather... ahem...well documented history of extensive bleeding after surgery, was the deciding factor in the Doc canceling today's eXtraction.

He says it's a fine line that we're walking here because my transplant - being so recent, and me being so immunosuppressed, that infection could flare in this tooth at anytime but, by the same means, opening up things right now could be an invitation to a bad party and so we are going to try to hold out, wait and see. 

The Doc did give me a scrip for more antibiotics and a few other drugs (yep. more pills.) and told me if things become intolerable that they will get me in on a moment's notice and it will be done.

So I got that goin' for me....which is nice.

That's all the non-news for now.

Clinic and some more Yin with Dr. Yang tomorrow.

Thanks for checking.

Time isn't holding us.....

This coming week is action packed with blood tests, a few large doses of prophylactic antibiotics for certain necessary dental maneuvers, (i.e. - wisdom tooth removal), clinic appointment, more blood labs, and I finish out the week on Friday with the third, and hopefully final, installment of the 3 hour Cytogam IV therapy.

Sans chills.

Doesn't seem fair that only some of us get to have all this fun.

If you care to hear how any of it goes check back later. 

I'll be sure to post something.

Thanks for checking in.

Three Month Mark

         Started the new med today.

   These buggers are as big as they look.

Ch..Ch..Ch..Changes.....

October went out with yet another change in meds as directed by Dr. Yang at clinic yesterday.

It's sorta-kinda big because it's one of the magic three immunosuppressants that make up the "magic cocktail" that they don't fool with too much. The doc wants me to switch from Progaf to Neoral which he says should reduce the tremors that I have by a whopping 50%. 

Hmmmm.

I'm keeping an open mind.

They've also cut back on another drug and added some more new ones.

Such is life after transplant.

I mean somebody has to support these drug companies. 

(No offense to all the Pfizer folks in my family.) I am very  grateful for the medications and what they do for me.

Even with these changes, the tx team is happy with my progress. They took 8 tubes of blood for more tests yesterday and Dr. Yang made it a big point to tell me just how great my creatinine, BUN, glucose, amylase and lipase levels, among others, are.

They want to see me back at clinic in two weeks.

Tomorrow is my three month mark and despite my occasional grumbling about the side effects, I am a heck of a lot better than I was three months before the surgery. 

And I am forever thankful for that.

Thanks for checking here.

Ice in my veins....

Sorry Laura!

I did kinda leave that hanging! 

The Cytogam IV went well for the most part last Friday. It just took a little longer than the usual 3 hours because 2 hours into things I got a wicked case of the chills.

A kind of "rattle you out of your skin" chills. The nurse sussed it out pretty quickly and took my vitals and unhooked me from the IV. I tried to persuade her that all the shaking was just me bouncing my leg (which I do.)

She didn't buy it. 

So I then I apologized for keeping my house so cool.

She saw through that like a cheap suprise.

Then I tried: "Well I DO have tremors!"

Un Uh......Nope......No way.

She responded by asking me how close EMS was. 

She wanted me to lay down and cover up but I got her to settle for me putting on a sweatshirt and having a cup of hot tea.

Over the next 45 minutes the nurse took my vitals 5 times asking me questions the whole time. After the 45 minutes or so....the tea worked or least that's what I tried to sell. She said it was the current absence of Cytogam and then after a dozen more questions, she restarted the IV at a much slower rate. Nurse Barb tells me that this is one of a myriad of side effects that are possible with Cytogam. She was just super happy that it didn't progress to anything else.

I did have chills (not quite to this extent) at the end of the first treatment, but I wrote it off and persuaded the nurse that it was nothing. She made note of it and let it go.

This nurse Barb (the first nurse was named Barb as well) was a real stickler for every detail.

Afterwards, I was fine. My Dad came to visit later in the afternoon and we had a great weekend. 

So all is well that ends well.

Final installment of Cytogam is slated for November 15th and then I'll be done with this noise.

Thanks for checking Laura!

More soon.

Whole lotta' shaking going on......

Not a whole lot to report this week.....my blood labs from Monday were all acceptable.
We'll see what today's lab results are tomorrow. The people at the local annex all know me by name now because they've seen me at least twice a week for weeks now ...how sad is that ?

Tomorrow, the nurse from Coram comes to give me my second 3 hour IV of Cytogam.
Hopefully all of that will go well again.

My next official clinic appointment isn't until October 31st so I'm hoping for a treat (maybe in the form of a med change to get rid of these tremors) and no tricks.

That's all I got for now.

Thanks for checking here.

It's funny when things change so much... It's all state of mind

Things got a little interesting this week as I changed one of my main immunosuppressant drugs from CellCept to Myfortic as I had posted earlier. 

Myfortic is a slight derivation of CellCept but supposedly without some of the nasty side effects, so far this seems to be pretty much the case. Not total absolution of side effects, but definitely less.

The other item of interest was the call I got this week from the tx center as it seems word had gotten back to Dr. Yang that I was not totally down with his quick dismissal of the tremors for an additional 3-4 months. The good doctor wanted me to come up and see him Thursday morning so he could explain things a bit more succinctly, which he did. 

What I hadn't realized to the fullest extent was just how wigged out the whole team had been about the one, brief, episode of rejection that put me back in the hospital at the end of August. Evidently such sudden episodes aren't quite the norm so early in the immediate post hospital days.

At the time, it seemed to me, that they handled everything so quickly and so matter-of-factly that this wasn't anything too big to worry about.

Thursday, I learned that they were a bit more worried than what I was initially led to believe. And so with this episode in the not so distant past, Dr. Yang does not want to risk any such episode again any time soon. He told me that most transplant surgeons do not mess with the time proven cocktail of the three immunosuppressants that I'm currently on until, at the very least, the 3 month mark and prefer waiting until 6 months out.

Not completely dismissing my problem with the tremors this time, he scheduled me to see him on Halloween (very close to the 3 month mark.) He will then review my blood labs from the past 3 months and will council me as to whether or not we can safely make a switch.

And so it goes.

Thanks for checking in here.

You have to learn to live with what you can't rise above....

Yesterday at clinic I arrived at 7:15am and had the obligatory bloodwork done and true to their word when I walked into clinic at 8:30 they already had most of the results.
Incredible.
I was then greeted by Dr. Yang, not Dr. Narins as I had expected.

- A little aside here.

Dr. Yang is the "Big Chief" at Pinnacle transplant center, he is a brilliant man, a renown transplant surgeon who has been at it for a very long time, and everyone highly respects his expertise and skill.
However, where Dr. Narins (one of the surgeons who actually operated on me) will come in and sit down, talk to me, discuss things in detail, answer all my questions to my satisfaction, examine me, and explain the next course of action, Dr. Yang comes in with a wonderful smile, shakes my hand, tells me how great I look, explains that my "numbers" are perfect, (textbook perfect yesterday.) and gives me short answers to my questions and leaves.
He is very amiable, but he is very busy man and I get that feeling.

Dr. Narins had told me he would change me off one of my meds to something different yesterday to ease the tremors. Dr. Yang, not so much. Instead he boosted one of my drugs that I'm already on in an attempt to calm things down but does not want to make the big drug change until.......and get this.......
AFTER NEW YEARS.

Can you say GRRRRRRRRR?

I about swallowed my tongue!!! I said WHAT?!?!?!?!? I mean these tremors are really bringing me down. They are relentless - 24/7.
The only pretzel-logic answer I got was: "You don't want to be in the hospital over the holidays!"
"True words" I said, "But Thanksgiving is still two months away!" to which he repeated:
"You do NOT want to be in the hospital over the holidays!
Just tolerate the tremors through the holidays then we will make the big switch afterwards."
Maybe it's just me but......this seemingly significant possibility of "being in the hospital" because of a med change doesn't sound like a very good way to start the new year.

Bob is a bit bummed. I mean, everyday, people ask me how I am feeling and I want to say "Great!"
instead I have to say "As soon as they get the meds worked out I will be great."

On other fronts, they took me off of CellCept (after I just received 60 days worth from the pharmacy) and put me on Myfortic which is a slight derivation of CellCept, hopefully w/o the side effects associated with CellCept.

I know, I know,....you warned me about this Jan.

As for the nagging cough, they agree with Dr. Daly's treatment and want me to follow his instructions.

So what started with the joy of "Your numbers are text-book perfect" was tempered a bit with everything else.

But this is my road and I'll walk it.

Sorry for all the bitchin' today. I'll cheer up for next time.

Thanks for checking here.

Dos Meses

Two Months

 

Well it's kinda hard for me to believe that it's been two months since my transplant surgery, I mean it's been a twisty, curvy, sometimes rocky road and two months ago, at this very moment, I was under....waaaaay under and under the knife. I remember being wheeled to pre-op and thinking "I can't believe that this is actually going down" and resigning myself, as the song goes, "to gravity and the unknown."  In retrospect, I should have been a lot more scared but the Pinnacle people know just the right mix of drugs to give you so the anxiety level is maintainable. Looking back at some of the posts from that day now almost seems like history.

 

And so.....as I mentioned at the one month benchmark (and probably will again for months to come)

I have been looking at the clock and thinking about where things were at this time on August 2nd.

 

 

Again, thanks to all of you for your support, and prayers through it all.

Please keep 'em coming.

 

 

As for news.... tomorrow I was scheduled to have clinic in Harrisburg at 8:30 but they called this morning and want me to come up at 7:15am to the hospital to have some extra blood labs done as they are finally trying to address some of my most severe side effects namely the ttttttttremors, nagging cough, and fitful sleep. They called yesterday morning to tell me to get a chest xray and then had me go see my primary care physician Dr. Daly. This cough has been increasingly troublesome for the past three weeks and it is really hurting my longest incision over my pancreas to the point where I darn near double over when I cough. 

So I hope we get some closure on that AND the tremors.

 

My bloodwork from Monday showed my platelets are running high so I'm sure they'll adjust something to work on that too. All my other important numbers - creatinine, white cells, lipase, glucose are all super. So despite side effects the docs are going to say - 

"The organs are working wonderfully!"

And really......that is the goal.

What a lucky guy I am.

 

I'll let you know what I find out tomorrow.

 

Thanks for checking.

 

Life Upgrade

It was a very early morning today.

First blood test was at 6:15, followed by me taking my CellCept and a second bloodtest 30 minutes later, then a two hour layover and yet a third bloodtest.

 This is a cool new feature at Pinnacle.

After all that it was a good day at clinic as I got to see Dawn, Becca, and Deb, a trifecta of great people at the transplant center. Then I was examined by Dr. Narins who is very happy with my overall progress. Both he and Deb said they want me "to start living." 

Living.....i.e. being able to go to the farmer's markets, being able to ride my bike (cautiously), start other lite exercise, and even go to church.

(Again with instruction to be one of the last ones there and one of the first to leave, keeping handshakes, etc. to a minimun.)

So this is wonderful and very welcome news to me!

In a bit of a departure from what I've experienced in the past when I've told the docs about the side effects and they've said "Well your new organs are working fine."... today Dr. Narins wanted to address the tremors head on.

He has taken me off of the"new drug" Astagraf XL because not only didn't it help with the tremors, but it also wasn't staying in my bloodstream for as long as I need it. So back to Prograf I go... but just for now. They want to see me back at clinic next Thursday and Dr. Narins plans to put me on another, different, immunosuppressive alternative all in the hopes of losing these darn shakes.

He also rearranged my CellCept doses to alleviate some other nasty side effects, and he has given me the OK to use cough medicine to treat a nagging cough that has been buggin for the past three weeks.

So even though they had most of my bloodwork from this morning available to review at clinic today, there are other results that are still pending.

All in all, it was a long, but good clinic checkup day.

Thanks for checking here.

Astagraf Redux

After the last post I got to thinking and sorta felt embarrassed that I was going to bail on this new drug after the rough start.

So flying in the face of what the nurse had told me, I decided that I would give it a go and try to continue taking the Astagraf XL.

Yeah this kind of free thinking has gotten me in trouble before so I was sort of bracing for some fallout from the transplant team but when the nurse called me this morning with the alternative plan and I told her what I had been doing she was actually kinda psyched. 

She was definitely happy that I had stayed the course. 

So the moral of the story is: 

"free thinking rules."

Or maybe "even a blind squirrel finds a nut sometimes."

So the coming week is full of adventure.

Blood labs this morning.

Dexascan tomorrow morning to get a base line of my bone density to use a reference since the high amounts of steroids tend to wreak havoc with the aforementioned.

And starting yesterday I'm back to taking two major doses of CellCept am/pm exactly at the same time each day for the next four days and then on Thursday, at clinic (6:15 am), they are going to test me for CellCept absorption or some such matter. I just know it is pretty darn early, I can't eat or drink anything for 12 hours prior, and they're going to take three separate blood draws over three hours.

I can't make this stuff up.

Thanks for looking here.

Richter Report...

I started the Astagraf XL this morning with high hopes that this new approach would help curb the tremors, but by about lunch time it was apparent that was not going to be the case.

Not only are the tremors 2x worse, but the lo-grade fever is back and my heart rate is really high.

Argh.

I called the tx center and the nurse advised me to tough it out today and go back to the standard Prograf twice a day tomorrow 

And we all know how that works.

I would be game for trying to give new drug a shot for a few days if there's light at the end of the tunnel (especially since I've got a 2 month supply of it now) but I have to go by what they tell me so my drug pioneering days may be over.

I'll keep you posted.

Pills to prevent Ills........

Even though I didn't have clinic in Harrisburg this week, the transplant center continues to review all the bloodwork that I've had done and for the third time this week, they've called and again changed my meds.

Today I received yet another box of drugs overnighted from the pharmacy in Long Island with a brand new alternative to the Prograf that I've been taking.
 Prograf is a strong immunosuppressive drug that beats down your immune system to help avoid rejection of the new organs.
Prograf is also one of the main culprits in the causing of the tremors that continue to bug me.
I've been taking a dose in the morning and double that dose in the evening.

Dr. Yangs thinks that perhaps the spikes in the amount of this drug in my body is a big contributor to all the shaking going on and has discontinued my current regiment of Prograf and replaced it with a new drug that's only been available in this country for two months called Astagraf XL which is basically the same compound, just extended release.

So I will take a double dose once a day in the morning now and we'll see how things work out.

In a strange twist of fate, Pinnacle was one of the transplant centers where this drug was initially put through experimental trials and researched more than ten years ago and so with it's recent release,
I am one of the first to be put on it post transplant.

Just call me "Cutting Edge Bob" (well...it beats the heck out of Shaky Jake.)

That's all for now.

Thanks for checking.

No Problema

OK, well as far as a three hour IV goes, that wasn't too bad. 

The Cytogam Cytomegalovirus Immune Globulin Therapy Dose #1 seemed to go well.

No need for EMS. No harsh reactions.

They caution about muscle pain later but it's way too nice of a day so I'm not  going to anticipate any trouble. 

Seems like a lot of hype for just an IV (as I've gotten pretty darn used to them) but it IS a blood product and as the nurse said: "Better to error on the side of caution."

Thanks for checking in here.

There's no reason to get excited...

So the drug delivery man came tonight at 8:30 with 3 packages of drugs, an IV pump, IV pole, sharps container, bags, syringes,  swabs, tubing, additional Cytogam info, and about 15 pages of paperwork for me to sign.

One of the most interesting was this page:

....listing all the risks and possible side effects of tomorrow's Immunoglobulin IV therapy.

 

 

Guess I better cross my heart and spit.

I'm seriously hoping that it all goes rather uneventfully.

I'll let you know.

Two Weeks Out...

Today has marked two whole weeks that I've been out of the hospital now and although the recovery life runs at a slow pace there has been some improving albeit slowly. Thus the reason for no daily posts lately.

There were a few changes in my meds after clinic on Monday. 

Magnesium Oxide was doubled to stave off the hand and leg cramping which had begun to bug me.

Sleep is still very fitful and tremor city continues.

Thursday, I had bloodwork labs done first thing and then later I had an appointment with my nephrologist. Although they had been apprised of my transplant and kept very up to date by the staff at Pinnacle, the reception that I received there was unbelievable. The office staff were authentically excited to see me. 

Dr. Schendel met me in the waiting room with an ear to ear smile, congratulations, and a hearty handshake. He was like a kid at Christmas - so psyched that all had gone the way it has. He was very enthusiastic, full of questions about the whole experience with a very genuine interest and just a hint of a "I knew it would be this good for you" attitude. 

He examined me, reviewed all my new meds, answered questions, and assured me that I'm doing quite well. As far as the swelling in my abdomen he tells me that a lot of it right now is edema and that it's not going away until my body is ready to absorb or otherwise get rid of these extra fluids.

My nephrologist is second to none. And as with the rest of what I commonly refer to as my "hand picked medical team" 

I am extremely fortunate to have him / and all the rest of them.

Today the IV drugs that they are to give me on Tuesday were to be delivered today but nothing came. I'll be sure to post how it goes on Tuesday as there has been a good deal of hype about it so we'll see.

I continue to enjoy these fine late summer days with a renewed appreciation.

Hope things are well with all of you.

I'll post again soon.

Now for something completely different......

Today 9/11, is my Dad's Birthday and for those of you that are lucky enough to know him - you know he rocks.

He has helped so much with everything since the transplant. Taking me back and forth to the hospital (a couple of times) to clinic, and just helping here at home with my family.

I am forever grateful.

Here's a repost of an earlier pic of him Skyping from home while I was in the hospital.

 

How cool is that?

Happy Birthday Dad!

Love ya!

Times will change.....

Clinic today seemed to go well.

Dr. Narins and his staff were all really happy at how good my incisions look on the outside but caution that the majority of the heavy healing is going on underneath and inside. He waived me off of doing anything more than walking short distances for exercise. Explicitly - no sit ups for now and no simple bike riding (my latest idea). 

Argh.

He wants to see me back in Clinic in two weeks but he will continue to monitor the bloodwork labs that I will continue to have done twice a week for the foreseeable future. 

Dr. Narins also says that if the tremors continue (which he admits I have a pretty darn good case of) he will eventually look at putting me on some "alternative" medicines. He wants to hold that card for now as he says that the meds that I'm on now are the best (albeit the side effects) for my given situation.

He and his whole staff seem very happy with my improvement. My creatinine is steady at .09 and my bloodsugars are spot-on. Where I see my limitations, easy fatigue, and side effects - they see progress. The doc said today "You've had not one but TWO transplants, we rearranged your insides, you're healing but it's going to take some time!"

I am lucky to have such a team.

I'll write more soon.

"Thank You" just doesn't seem like enough...

YThis morning....before I reloaded on meds, and while the tremors of last night's meds were just beginning to be somewhat controllable, I sat down and wrote a Thank You card to my donor's family.

I have been thinking about this since I emerged from the ether back on August 2nd and what I would try to say. And so shaking with the double shot of both very raw emotion and the drug induced tremors, I tried to say my simple "Thanks" in 163 seemingly insufficient words or so.

OK, this is pretty personal but if you've been following along here I think you know.....this is how I feel.

                                                                       My Pitiful Penmanship.

"Thank You" just seems to fall a bit short for the gifts, the chances, the years, that I've received.

Now, of course, I don't know my donor's family but through the 

Gift of Life Donor Program which is my region's nonprofit organ and tissue donor program, they arrange the delivery of all letters and correspondence between transplant recipients and the families of donors. It is then up to the donor's family if they would like to stay in touch with you or remain anonymous.

Gift of Life Donor Program, which serves Pennsylvania, Delaware and New Jersey, is one of the oldest and largest of 58 organ procurement organizations (OPO) in the United States.

Gift of Life is part of the nationwide organ and tissue sharing network run by the
United Network for Organ Sharing (UNOS). They offer support programs to the family and friends of donors who gave the gift of life after death to help cope with the sudden loss of their loved one. These programs are offered free of charge in recognition of those who made the gifts possible. The donor program is also responsible for all aspects of educating the community about organ and tissue donation.

So the point of this post is to again pound the point home that if you ever even thought of becoming a potential organ donor, PLEASE do it today. Remember you, one of your friends, or loved ones could be moments away from needing a life saving transplant.

As I mentioned, the Gift of Life program serves my area, but through this link: organdonor.gov you can register with any organ donor network in the U.S.

119,501 folks are currently on waiting on transplants in this country.

Eighteen people die each day waiting for organs.

I was damn near one of them.

If you've left this life you sure won't need your organs anymore and you can give someone else, or several someone else's, (up to 8 people from a single donor!) a second chance at the life they still have.

Thanks so much for thinking about this and for checking in here.

The devil is in the details.....The poison is in the dose....

Oh what a beautiful day it was here today!

Although I wish I could've taken better advantage of it, I enjoyed it nonetheless.

My friend Marilyn came by with some killer lunch. It was absolutely delicious and she, Nick, and I, ate outside on the patio in the warm sunshine under crystal blue skies.

Later, I shored up the IV therapy plan that I mentioned yesterday. The nurse is coming to give me my first 3 hour installment on 9/17 @ 8:00 am.

Otherwise, my biggest gripe these days

(And I must be on the mend if I'm starting to gripe) is the nasty side effects of some of my meds most notably the shaking and tremors. Inside and out. Like 24/7.

I have things I need to write and I don't dare even try in this current state.

I told my brother today about the tremors and he said his doctor would recommend a glass of red wine.

I told him my dry cleaner would not.

A lil bro humor.

Tomorrow marks a whole week that I've been home. The first full week in the last five and I am so grateful for that.

Thanks for reading here.

More soon.

Though the course may change sometimes....rivers always reach the sea

Clinic went well today.

Vitals were good and it looks as though I may just have beat the pesky lo grade fever that's been hounding me. They assure me that the tremors that haunt me now will subside over the coming weeks. 

If I heard it once, I heard it a half dozen times today - "Bob! You're only one month out! You have to give it time!"

They again did more bloodwork today and It's been determined from the blood that I had drawn on Tuesday that quite ironically my blood  platelet levels are a bit too high now. 

Remember, just a month ago they were filling me with platelets to try and stop all the bleeding. Well now it seems like nature is taking the reigns again and I currently have more than enough and so today I was started on the drug Plavix to thin things out just a bit. It is a fine line after transplant, between being suceptible to excessive bleeding and forming clots and either can be real bad news. 

Dr. Narins had expected me to be on this drug shortly after the surgery to ensure good blood flow through the anastamosis but held off due to all the bleeding, now the tide has shifted a bit and the danger would come from a clot in the same area. 

So what's another pill in the big handful.

Speaking of pills, today I had to order my second round (mail-order, big-time stuff here). The big drug truck should be delivering the cases on Saturday.

I also had to set up 3 sessions of what is known as "Ig therapy," today - otherwise known as Cytogam that will take place over the next 3 months where once each month, a nurse will come to my house and administer a very slow 2-3 hour IV. This will protect against any possible "Cytomegalovirus." Or CMV.

Yeah.

I don't even like the sounds of that.

No sir.

All in all....it's getting better all the time.

Maybe not at Bobspeed but all in good time.

Thanks for checkin' in here.

Blue skies from pain....

Today was yet another slow 'n easy day.

Vitals (all except the presky lo grade) were good and I'm really wanting to get on with things. It's just that I find myself still tiring very easily and I am painfully aware that there are "more things" in my abdomen as I currently have this little cheribic "Buddah belly"that I hate looking at and am determined to lose A.S.A.P.

It's just that right now sit ups are a bit beyond my current reach and even walking to the point of losing poundage may be some time away.

But I am determined.

It's got to go.

Dr. Narins, my one surgeon in his infinite wit, tells me "Well you DO have two additional organs in there! And your bikini days are probably over."  

Yeeeeeah......Hardee Har Har.

Again, probably T.M.I.

And so for now I'm catching up on paperwork and simple things around the house and enjoying this beautiful late summer weather.

Tomorrow morn, I go back to Harrisburg for more bloodwork snd clinic. I expect nothing but good reports.

I'll be sure to let you know.

Thanks for checking in here. 

Best Tuesday Since My Surgery....

Today started off good in light of the past month of Tuesday's.. As I mentioned last night - Monday nights into Tuedays have been rough since the surgery. But that was put to rest last night as although I still have the low fever, the crazy night sweats, very fitful sleep and drug induced tremors but at least this morning I didn't need the Rapid Response Team, didn't wake up in ICU and didn't wake up with reason to go back to the hospital today.

Today my vitals were good this morning.

I had bloodwork done first thing.

Was able to get my haircut, do some simple things around the house, had a real nice visit with my friend Deb and then dinner with my family.

So in a small way today was a victory.

I'm measuring these early days by small victories. Pitiful to most I'm sure but as some get well cards have said "the road to recovery has no given speed limit" and so I may be in the slow lane right now.......but all in good time.

Promise.

Unofficial end to a wonderful summer...

Well today was spectacular. Got to be with family, got to be outside in the sun.

I even got to do some very simple things around the yard (and boy does it need it).

Tonite we had a fine cookout complete with a mix of veggies from the garden, and we sat out just enjoying each other's company, the warmth, and sounds of this beautiful evening.

All the rocks in the road, all the water over the dam, doesn't seem important at all in this light.

Can't tell you how many times I looked at the clock today and wondered just where things were along an exact month ago at the particular time. I'll probably be doing that for years to come as I don't see myself losing the ability to being amazed by it all.

Most of all.....(and you've heard it a thousand times already but....)

.... I am thankful.

For oh so much.

Tonight is, of course, Monday night.

Each Monday night into Tuesday since the surgery something has managed to go south. Well that ends here. Tonight.

A month of such antics is enough.

We're movin' forward.

I have blood labs to get drawn in the morning and I expect to be able to give you all a Shiny Happy Bob report in the morning.

Hope you all had a spectacular day!

I know the pieces fit.

After a bit better of a night last night I write here with the lament of missing out on all kind of Labor Day activities going on. 

For years I've wanted to see the Kipona Festival in Harrisburg. This year it was literally a stones throw from the hospital, right across the street along the river but out of reach for me THIS year.

Many other markets and festivals are still off my schedule for several more weeks but then I'll be back with a vengeance and an even deeper appreciation of them. 

The lesson here to ALL is carpe diem. Seize this moment.

Seize this day. Use it to the fullest. 

"No time to save up on life. 

You gotta' spend it all."

You have to believe that I must be getting better if I'm starting to gripe about stuff.

; )

The little problems, night sweats (not quite so bad), fitful sleep, tremors, and a few others that I'll spare you from here still persist, but today I am one month out!

Yep! As I write this.....exactly one month ago at this very hour, (and for the next six and a half hours) I was laying on my back in the OR, arms out like a cross, as they installed my new parts and gave me this second chance at life.

God is indeed good.

I wish everyone a superb day - hopefully with your family or friends.

More from here later.

When it's all good....it'll feel like it should.....

Late day posting here on my first full day back home and it certainly isn't because I was so busy doing all the things that I need to get done. Rather it was a day of uber R&R after a real bugger of a night last night.

I'm still pushing just a very lo grade fever and all my other numbers were good at bedtime but shortly thereafter I woke absolutely soaked in sweat. If that wouldn't be gross enough...it happened four more times during the course of the night each requiring a new tee shirt, sleep shorts, sheets, mattress cover, pillow cases, etc.

Not real condusive to a good night's sleep. And so I was really draggin' a bit today.

On the upswing, other than the pesky body heat, my other numbers and vital statistics were all good this morning so I'm thankful for that.

As far a a few other rocks on the road to recovery - they still have me on major league (no pun) quatitities of steroids.

100 mg of Prednisone 2x daily

1500 mg of Cellcept 2x daily

And topped off with some delightful Prograf.

These drugs will eventually be tapered (or increased, Ugh.) but each have some darn nasty side effects. The Cellcept is causing me the tremors again and with this current large of dose it's also causing my ankles to really swell and a fair amount of nausea. Other than that - it's no big deal and it is one of the drugs that I expect them to cut back on a bit.

Cutting back would be nice as my Big Morning Gulp is now up to 26 pills, and my NiteCap is currently sitting at 24.

And so to answer the $60,000 question that everyone has - I know that I will feel better, I mean really better in the coming weeks just because my new organs are working wonderfully but these rocks in the road along the way don't really make for feeling the "great way" everyone is sort of expecting me to feel right now.

Sorry!

I AM trying!

All in good time.

Remember, although it seems like something short of a lightyear ago to me now, it was only a month ago tonight that I was waiting for the doctors to go recover / evaluate the organs and I was still anxiously waiting to see if this whole thing would happen.

Now it has.

Not without some rocks in the road but

I have been so blessed.

And I remain eternally thankful.

More tomorrow. I promise.

#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.

Change is coming.

I talked with Dr. Narins this afternoon- he told me that I only have a low grade fever now and all my other numbers are looking really good,my organs are doing wonderfully, and test results continue to show improvement. 

If things continue to trend this way they're gonna send me home tomorrow.

YESSSSSS !!!!

I'll post more when I know.

No Ticket to Ride

So I deliberately held off from taking any Percocet (Contains Tylenol) or any other Tylenol products last night just to see if I had beat this fever or whether it had been subdued yesterday by the aforementioned drugs. 

Sad to report that I woke at 5:15 with shivers and shaking equivalent to an 8.0 on the Richter scale.

Argh.

I haven't seen Dr. Narins yet this morning but I'm betting he is going to harsh my mellow plans of chilling on my own couch tonight and sleeping in my own bed.

Fevers suck.

That's the word from here @ 6:00 am.

More later.

I feel like a (bad) number....

4 o'clock am here now at Ground Zero.

I slept the first part of the night away pretty well but now I am awake with a fever again. My blood pressure is pretty high 178/98 and my heart rate is 122.

They just weighed me - there's no weight gain. So they've given me more painkillers and some Tylenol for the fever and started another bag of antibiotics.

Laying here shaking like a car with a bad timing belt is no fun

I'm hoping, by morning, some things change. 

I'll keep you posted

Absolute elsewhere in the storms of my mind...

And so under the advisement of my close counsel I requested some pain meds and some Ativan before the procedure was started yesterday and then the anesthesiologist also gave me a good dose of sedative and by God it was all said and done before I knew it... 

AND I SURVIVED !!!

(Yeah ok. Everybody told me I would but I was I guess I was just being a candy ass on this one)

Sometimes better living through chemistry is the way to go.

I don't want to start any blasphemous rumors but I think that God has a sick sense of humor and when I die I expect to find Him laughing....

Another Thursday and I am still here at Pinnacle fighting off an infection and fever and all the accompaning crud.

Dr. Yang has a strong belief that this is coming from a stent that has been left inside me a little longer than what is customary. They had to wait for this because of all the extreme bleeding I had going on.

So binding myself within the limits of T.M.I. all I'm going to disclose here is that this afternoon at 2:15  I am to be "sedated", taken to the operating room, and have this 12" stent removed by Dr. Boline.

It was scheduled to come out on Monday but with this infection and all -

now today is the day.

Now I don't consider myself an overly excitable boy but this has me about as high anxiety as it gets and I will be darn glad when it is over.

Due to the use of Anesthesia for this I haven't had anything to eat or dink since midnight and only a very small gulp of water to take my 19 pills this morning.

Some medical manuevers border on sadism.

On other fronts, Dr. Waybill, the nephrologist, has changed my meds again she now has me on Metroprolol, essentially just a "kiss of a dose" am & pm.

With the stent gone, and the volume of antibiotics they are pumping me full of, they expect to see the fever dissapear pretty quick and if so, I'll be able to go home.

Let's hope this hold true.

My world is getting smaller. Sorry God.

Dr Yang was just in. 

He makes this seem like it's no big deal. 

(Riiiiiiiight.)

Or at least nothing he hasn't seen many times before. He told me that they are dropping the A(ntibiotic) Bomb and that if all goes well today - I'll soon be out of here.

He did mention that the nurses had mentioned that I had asked in clinic on Monday, when I could go back to church. He laughed and he said "You've got to stay away from church man" he says "I can't tell you how many times we've had problems with people who insist on going to church" he said that "people will go to church no matter how sick they are and that's just a petri dish of infection." 

On Monday they told me they didn't want me to go for two more weeks and today he said 4 to 6 weeks. No crowds at all for 4 to 6 weeks. 

Argh. 

I'm a social guy.....

Now I'm going to be a hermit.

Almighty Fear

So spending half the day in the York Hospital ER for evaluation. And after a plethora of new bloodwork and some IV's, the attending ER physician consulted with Dr. Yang and he wanted me to be re-admitted to the hospital in Harrisburg.

So this is where I am now.

Ironically back in the very same suite that I left 4 days ago.

When I got off the elevator on this floor it was like rock star status as one nurse down the hall cried "MR. LENZ!!!!!"

This caused several other nurses to come out and look and they all "welcomed me back".

There's something a bit sick about this.

I haven't seen the doctors yet so that's it for now.

I'll post when I can.

I didn't plan on THIS today...

So I woke today really not feeling well and my numbers are off a little bit.

BP is 155/95

Pulse is 122

Temp is 102.5

Nausious with tightness in my chest.

General feeling of unwellness.

Yeah...... I be 'illin.

I called the tx center and they've sent me to the local ER for evaluation.

It's where I am now.

Argh.

They are taking a boatload of blood.

We'll see where this goes.

Sometimes you gotta take the crap with the cream...

So clinic seemed to go well today. I saw tx coordinators Becca, Deb, chief nurse Judy, Dr. Yang, Dr. Narins, Dr. Waybill, had multiple examinations, vitals, and bloodwork done.

They all said that I looked "terrific". Dr. Waybill said I looked better than most recipients of just a kidney. So that's good to hear. But when they asked what I had been doing the past 2.5 days...I got yelled at "for doing too much".

I feel like I've been just a real load - not doing much of anything.

Better and stronger are coming very slowly and I am notoriously impatient. 

I was also told that I am not to go to church, markets, or be in any kind of crowds for at least another two weeks because of a drug they gave me to really K.O. my immune system. The effects of this drug should linger for about another week and a half. 

They really have this stuff down at Pinnacle. 

Dr Waybill understands my cabin fever but told me that if something gets wrong with my new kidney, they can almost always fix it with meds. The pancreas - not so much. And so cabin fever or not - I've come too far, been through too much to risk that.

I am pretty darn ecstatic with two wonderfully working organs and I plan to do all I need to to keep them that way.

The docs started me on another drug today that will thin my blood a bit. It's customary for tx recipients to be on such a drug but they stopped mine when I was bleeding so much. It's a very, very, fine line and so they will be watching this extremely closely.

I have clinic and labs again on Thursday. Twice a week for several months.

In a weird way....it's kind of comforting that they follow you so closely.

There's peace of mind in knowing that if anything goes awry, they would know in very short order and be able to address it.

I've been thinking that it was already 2 weeks ago this evening when things went really south - the RRT code, and being rushed back to ICU in the middle of the night. I hope to never relive an episode like that.

The past is done and I'm movin' on.

Nothing is going to go awry.

I'm a believer.

Thanks for checking here....I'll post again tomorrow.

These times are different....

So although sleeping at night is still fitful I am slowly getting used to this new lifestyle. Pills, drinking liters of water, checking my blood sugars, weighing myself, taking my temp, and blood pressures 2x daily and for now - taking it kinda easy but also living without all kind of killer toxins in my body. I am also able to eat (everything but grapefruit) and without taking insulin 3x daily. As a matter of fact I haven't had a shot of insulin in the past 17 days - the first time I could survive without them in 38 years.

Although that is a "lifestyle' change and it is nice, what is much, much, bigger to me is no more threat of Hypoglycemia and the unawareness of it that has consistently almost killed me dozens of times in the past 10 years.

Life is good.

Tomorrow I go to clinic for an exam, meetings, bloodwork, etc. i will be doing this every Monday and Thursday for months to come.

I'll be sure to let you know how it goes.

Thanks for continuing to check here.

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.