Close (Transplant) Encounters of the Third Kind

No, I am not referring to anything that includes Richard Dreyfus building a monolithic dirt mountain in his living room. This is way more realistic, and I believe will have a better outcome than ol' Richard going happily away with a bunch of very nice aliens.

FIRST AND SECOND ENCOUNTERS

You may recall that recently I met a remarkable double-lung recipient, Michael, who received his organs from a young police officer killed in the line of duty. Thursday, after a great lunch with Greg and Suzie at Sean Taheri's excellent restaurant in Pleasant Hill, we S2000'ed it back to the Ile du Livermore for the weekly Farmer's Market. While examining the produce, I noticed a man towering above the crowd and recognized him as Michael. He is 6'8" tall. After he realized who I was with my mask on, we had a nice chat and he invited us to the California Transplant Donor Network picnic on Saturday in Pleasanton. We called the event organizer to ask if we could attend, and were warmly assured we could.

THIRD ENCOUNTER

We again drove the S2000 to Pleasanton and found the group. We immediately began meeting people; there were the paid CTDN staff members, and many volunteers representing both recipients and donor families. Pretty incredible stories everywhere. We ate our burgers sitting next to a young woman, Tiffany, who just had her FIFTH kidney transplant, and she will be joining many of the others for the 2010 Transplant Games in Madison, WI. Her first one was at age 12. Our friend John from TRIO is campaigning to receive an experimental islet transplant that will relieve him after 50 years of diabetes. He already got a kidney from his tennis partner.

We spoke to Isa, also from TRIO, who is currently, along with her twin sister Ana, visiting all over the world promoting organ donation. They have written a book, "The Power of Two", about their struggles with cystic fibrosis and their subsequent double-lung transplants. Ana has had two transplants and is in the hospital now. Isa is heading for the Transplant Games where she will swim AND play the bagpipes! That takes some lung power, yes? A feature-length documentary based on the book is in production now, and I believe will debut at the Sundance Film Festival this year.

We were introduced to June who is responsible for volunteers here in Alameda County. She enthusiastically took our contact information and already has us scheduled for a CTDN table at an event at Eden Hospital in two weeks. Even though we have not been through the volunteer training, she liked our story and I am confident we can speak to people about transplantation intelligently.

THE CONDITION MY CONDITION IS IN

There was a bit of urgency on Thursday as the Monday lab results arrived. It appears my Tacrolimus (an immunosuppressant) level is way low. The coordinator asked if I had skipped doses or stopped taking it. Well, no, of course not. So they bumped it up, but not too much since an increase could wake up that nasty BK virus and help it assault my kidney. I will be heading to UCSF early Monday morning to get stat labs done so we can determine where I'm at.

My morning and bedtime blood pressures have been frighteningly high, so I calibrated my meter at Cardiac Rehab. It's not very far off. So again I called UCSF and was prescribed Amlodipine. I had taken this right after the surgery and Cheryl recalled it gave me a serious case of CRL (Charging Rhino Legs, a very old Henry concept) so they took me off of it. The pharmacist here confirmed that a side affect is swelling of the feet and legs. Darn.

So again, despite the side issues, we are continuing to enjoy good health, enthusiasm and a newly-rediscovered passion for my little sports car. I did not drive it much for the last five years, and it is once again pleasing me immensely, even after nine years of ownership. I am actually glad they stopped making them last year since I am certain I would have had hungered badly for a new, updated model. But hey, I'm good as it is.

Happy Sunday and have a good week.

Bob/Irv

Back to the Future

Our CFO and main squeeze here at Transplant Trib Solar System Headquarters pointed out that I had not suitably described the past Father's Day weekend. So with your permission, Dear Reader.....

FATHER'S DAY EXTRAVAGANZA

We have a long-standing tradition (goes way back nearly a month now) of extending Mother's/Father's Days to several days in length. This is due to the somewhat wacky work schedules of both our Trader Joe's couple and, specifically, Andrew who is still working away at two jobs. Last month at Mother's Day we had the traditional Sunday observance, then off to HP Pavilion for James Taylor/Carole King on Tuesday night. Wednesday was spent touring with the Chaws, winding up with a gourmet dinner (oysters!) at Leslie and Chris'.

So once more we invoke the magic watchword "anything worth doing is worth doing to excess" for Father's Day. After all, fair is fair. On Saturday we went to Sacto for a very nice lunch/brunch (featuring a Bloody Mary make-it-yourself bar) with Linzel and Andrew. Andy had to work at the restaurant that night, so we headed out to our monthly Dinner with the Gang. This time it was Looney's BBQ in Oakland. As always much mirth ensued and we returned home with plenty of BBQ leftovers to enjoy.

The traditional Sunday celebration started with breakfast at our local Country Waffles, rubbing shoulders (I THINK it was a shoulder) with all the other blue-haired ladies and old-fart Dads. Then we took in the early screening of "Get Him to the Greek". Funny as poop, definitely leave the kids at home. We were totally alone in the theater while the rest of the place was awash in ankle-biters seeing "Shreck 3D". We wound it up with some serious motor racing on the tube and another killer dinner by my Sweetie. There were quite a few excellent and needed gifts for The Old Guy which was very much appreciated.

Leslie planned to have us all over for a Moss/Chaw Father's Day yesterday, but due to her brief illness and Allan's work schedule it has been postponed a week.

HEALTH UPDATE

Under the umbrella of unnecessary distractions I would place my current dental situation. A coupla weeks ago my tooth hurt a bit, and one evening while flossing/brushing a piece o' tooth dropped clean outta my mouth. Looking back I shoulda saved it to put under my pillow for the Tooth Fairy. Anyway, no urgency, and I went into the dentist yesterday. Seems I cracked the tooth somehow, and one chunk came off. The tooth was split all the way down so the dentist dug the rest out and gave me a bunch of gauze to jam up in there. No further problems so far.

READER FEEDBACK

My CFO mentioned that some folks have difficulty with the length of these vignettes here at the Transplant Trib. Some are saying they try read it at work but it is too long to comfortably do that. Yes, I admit to frequent incidents of Journalistic Diarrhea, and I humbly apologize. But the creative process is at work here and sometimes (most of the time) I can't help myself. Do you suppose Michener's or Follett's publishers told them "OK, guys, 475 pages and that is IT!". While we have actually considered publishing a Reader's Digest-style edition, with large print, current economic and staffing concerns prohibit this.

Please allow me, therefore, to offer a few sincere suggestions on overcoming obstacles to fully enjoying your Transplant Tribune experience.

1. If your boss peers into your cubicle at your screen, consider reading the blog at home. Pour yourself a favorite beverage, put on your jammies and read away.
2. You say you don't have a computer at home? Simply go to your nearest Fry's, Best Buy, or Office Depot and getcha one.
3. No computer stores nearby, or can't afford one? Try Kinko's or your local library for short-term use of their computers.
4. Consider reading the blog in easy-to-handle portions, resting comfortably in between sessions. You certainly would not eat an entire deep-dip sheepdip cherrystone cobbler (the best in all of Lompoc) in one sitting, now would you?
5. Failing all these suggestions, you can email me with a convenient time and a preferred phone number and I, or a reasonable facsimile of me, will personally call you and READ IT TO YOU!! Try that with Danielle Steele and see what it gets ya.

I fervently hope these ideas help you in your quest to keep up with this little silliness of ours. Please, do let me know. On second thought, let my Sweetie know so she can break it to me gently. I may be Bob/Irv version 2.0 but I am still a sensitive kinda guy.

Well then, I see it is time to leap into action. Until our next bloggable session, I remain:

Bob/Irv

I Tease, But Then I Please

To the multitude of people (OK, just one) who were sucked in by my "tease" from last time, all I can say is "neener, neener, neener". But now comes the time to reveal all, or at least most, of the content of that evil tease.

ONE YEAR LATER, WE FACE DOWN OUR DEMONS

For those of you who are sick of hearing about past adventures, or if you are new to this Transplant Tribune thing, I suggest you go back and check the posting of June 28, 2009. Here we are, one year later. I was determined to get "closure" by joining Cheryl as she visited her great Aunt Bessie Hammond on this, her 94th birthday. We once again flew to Long Beach Airport on Jet Blue. On the way I was squirmy and could not find a comfortable position in the seat. Just as we started to land I got a strange sensation in my chest, of all things. What the Hell? This cannot be. At least we now know to go to LB Memorial, not Community, but still, what is up here? It wasn't like pain, or pressure; I cannot describe it. I decided it must be heartburn and when we landed it went away. That was the first and last time on that one, thankfully.

We went to Shoreline Village (tourist trap!) for lunch, to a place we went last year for dinner. Good Seafood Cobb Salad; so far so good. Then it was off to Aunt Bessie's nursing home for a visit and a bit of dinner. She was watching news and there was one of those famous L.A. car chases going on, you know the ones with the news chopper following along, like with O.J. years ago. "The suspect is on Cherry St. approaching Ocean Blvd. Now he is turning left through slow traffic onto Shoreline Dr....." Shoot, that is right over us, right now! They finally shot the guy in the parking lot of the Marina. What a dumbass. I LOVE L.A. Actually I DO love Long Beach. We have been going to the Long Beach Grand Prix since 1976 and have seen the entire town turn from a tacky Navy town full of drinking establishments, retirement homes and adult theaters to a beautiful and entertaining city.

We hung out in the Living Room with some folks in various states of disrepair while Auntie talked about each and every one of them in a pretty loud voice. She is hard of hearing, you see. We were very embarrassed but nobody seemed to notice; they must be used to her. We went into dinner while AB fixed up her own meal of jello, ice cream and cranberry juice. No teeth. We had a nice moderately-sized dinner while watching other diners silently eating and totally ignoring their table mates. Aunt Bessie showed us how she tears up napkins and takes them back to her room to use for blowing her nose. She told us she always wraps up any leftovers she has to discard so homeless people who dumpster-dive will get clean throw-away food. More kibitzing in the Living Room while Bessie tried to give Cherie a bunch of the home's National Geographics, gratefully refused, by the way. She really is generally with it on current events and such, and her last checkup was quite satisfactory. And then, the escape. Next opportunity: the Christmas Party. Cheryl tells me it is a genuine laff riot.

It was a mere four blocks to Community Hospital of Long Beach. The memories came flooding back for both of us. Cheryl shot some pictures of me in front of the sign and in front of the door to the ER. A very nice volunteer saw our admittedly strange behavior and came out to ask us if we needed assistance. We explained our antics and got an enthusiastic congratulations. And no, Leslie, I did not give the one-finger salute. They try pretty hard, it's just they got no $$$.

We found our hotel, the Maya, right plum next to the Queen Mary. We enjoyed some small plates and a brewski in the hotel restaurant. Next morning we strolled around Belmont Shores until it was time to go to the airport for my first commercial jet flight from LB to OAK.

They don't have many jetways at this very, very old airport. So we did the steps thing up to the door. At the top, I remembered when Tricky Dick got on the plane when he got the boot back in like 1974. So I turned around at the top step, and did my best awkward Nixon wave to all the angry passengers waiting to get a space in an overhead bin. "Hey, I'm Richard Nixon, and I used to be your President. Bye bye". Wait, was that Air Force One? Seems to me he shoulda had to buy a couple of cheap Southwest tickets like the rest of us, being disgraced and all.

It felt good to wave farewell to Long Beach for now, but as Arnold sez, "I'll be back".

Excellent flight this time, plenty of entertainment on XM radio and generous snackies too. Jet Blue rocks, dude.

So we had returned to the scene of the crime, stared down our demons, and survived to tell you about it. Cool, eh?

CAN'T THINK OF ANYTHING ELSE

Why are you looking down here? I said I couldn't think of anything else. What do you think, I'm lying to you?

Happy Trails to You, Until We Meet Again...wasn't that what Roy Rogers and Dale Evans ended with?

Bob/Irv

Roll Over, Mrs. Beethoven... and Other Stuff

THE CREATIVE PROCESS REVEALED

Welcome to another Late Night edition of the Transplant Trib. No, it is not prednisone-fueled this time; I'm down to 30 mg a day so I think the side effects have been grossly exaggerated. The driving force on this post will become evident as you (hopefully) read on.

Allow me to share with you an actual conversation I discovered between Ludwig van Beethoven and his wife, the lovely Maria Anna Phillipina van Beethoven. For your benefit, Dear Reader, I have personally translated this from the original Middle Germanic to a version more in step with 21st Century language. And, as always, I swear I am not making this up.

Maria: Ludwig, dude, you need to stop playing on your X-box and get your butt over to the synthesizer. Your homeys are wanting some entertainment, and we need the dough.
Ludwig: Chill, babe, I am almost at Level 10 on "Grand Theft Auto VI" so cut me some slack. I can't just squeeze one out on demand, you know.
Maria: Then you better get out and get yourself a paying gig somewhere, or find a street corner where you can jam and people will throw cash into your violin case. Maybe you could peddle a few copies of that CD we burned, that set us back a crapload to make those.
Ludwig: Aw, OK Dear, just get me a Red Bull outta the fridge and I'll see what I can do.

Well, this scene is being repeated almost daily here at Transplant Trib Intergalactic Headquarters. My faithful CFO is continuously urging Your Editor and Publisher, pointing out numerous moments during each day as "that's bloggable!" The other morning I remarked that I was actually enjoying shaving my mug with the new wonderful blades I discovered. She said "That's bloggable!" but c'mon everyone, that is not the kind of incident that she claims you are constantly clamoring for. And like Ludwig, relevant and creative writing comes when it comes, it cannot be forced. Be assured, by the way, I am in no way comparing myself to Beethoven. He was even more deaf than I am.

After all, here at the Trib we have no stinking deadlines to regularly meet. We have no budget, unions, delivery trucks or classified ads like regularly-scheduled media. We have no revenue either, although unsolicited gifts of any nature are gladly accepted. These are parts of the Transplant Tribune Mission (Impossible) Statement. Our Goal: To Advance the Nature and Frequency of Organ Donation via the Occasional Spewing-forth of Transplant Tribune Goofiness and Information. OK with y'all? Cool.

A TRULY INSPIRING SESSION

We were informed by a Cardiac Rehab nurse that Pulmonary Rehab was having a "talk" today by a former patient of theirs who is a double-lung recipient. This very tall, very enthusiastic man, Michael Lause, spoke for nearly an hour about his transplant.

From a very small clue dropped by a UCSF doctor, he was able to deduce his way to discovering the identity of his donor. It was a young police officer who was killed in a violent car accident on the way to a call. This officer left a wife and two young children as well as dozens of friends, relatives and fellow police who loved and respected him. Michael was enthusiastically embraced by these many people. He was invited to a cop picnic honoring the lost officer. He walked in a 10K benefit given for him. He was warmly welcomed into the family's home and accepted as part of the continuation of this man's legacy. The heart and kidney went to one needy person, and likewise his other kidney, liver, and pancreas. In all five lives were given a new direction from him. Pretty heavy-duty stuff, eh?

Cherie joined me for this, and we were both taken by the many similarities with our own experience. Same surgeon at UCSF, staying on 10 Long, and most of all the feeling of deep sadness when they summoned him. I cried when they told me they had organs for me, and it was a young person. Then there was the incredible feeling afterward, followed by the expected ups and downs like I am experiencing now.

Michael did allow a short period for questions, and we took an opportunity to tell the group about our journey. I emphasized the immense necessity for committed support, patting Cheryl on the knee as I spoke. There were questions from the group of lung patients, and I hope the session encouraged them to aggressively pursue a transplant if they are so inclined. The rewards can be immense, as I hope many of you know from our experience.

A (WASTED) TRIP TO 400 PARNASSUS

After dropping Robin off at Oakland Airport, we arrived quite early for our kidney clinic appointment. We were gratefully called to see the doctor rather quickly, well ahead of our scheduled time. Our usual fear of rush hour subsided, and we went in happy and hopeful.

That was far as the euphoria went. I believe I may have met this doctor on one of my many days in the hospital. Naturally, she did not know me, but she did not seem terribly interested in my situation either. She asked me some stuff like "why are you taking this or that med?" or "when did you stop taking this other med?" which seemed to us like stuff that should be in my chart. Maybe not.

We asked her about the additional special tests that were ordered and which I completed at Quest last Monday. She hit some keys on the computer, and said the last results were from like from May sometime. This could have been a Quest thing, as they are unable to report labs as quickly as the UCSF lab can. So we asked what these orders were investigating. She knew nothing about what was specified and all she could muster up was "do you have any questions?". Well, duh, I just asked them but you don't seem to know diddley-squat so let's hit the Bridge and get outta Dodge early. After she checked my heartbeat and lungs and had a peek at my kidney incision we were in fact goners.

Luckily today the kidney transplant nurse practitioner we normally see did return our pathetic phone call. Cherie made some notes but hey, it's like 3 ayem right now and she is sound asleep as I pound away out here on this post. I do it for you, Gentle Readers.

Anyhooo, I don't recall the descriptions except one was for liver function which I have no idea why they did that. But at any rate everything was either normal or slightly improved. Nothing dramatic, nothing bad so we stay the Kidney Kourse for now. Oh, and we were told we could request specific doctors based on their availability on clinic days.

NOW THE BIG FINISH

I guess if these posts are more infrequent they are longer too. My apologies. I will spare you the Father's Day weekend plans (although they will not include my presence at Infineon Raceway) and perhaps describe them retrospectively in the next edition. Likewise, I will let you in on our surprising escapade that is planned for early next week. This is known in big-time journalism as "the Tease".

Consider yourselves Teased,

Bob/Irv

Predisone Project Progress

PREDNISONE ON PARADE

In case you were wondering, and of course who wouldn't, the intense predisone therapy has seriously flopped in manifesting itself in the bizarre ways that were predicted. Beside the fluctuating glucose levels (got to 410 on Wednesday!), I believe my outstanding endocrinologist had me make the right changes. It is now largely OK. Although it would have been interesting, I am not climbing the walls, endlessly stuffing my face with food, or angrily lashing out at anybody who dares approach me. Of course this all means I did not clean out the garage, wash and wax all three vehicles, or organize the spice shelves either. Sorry.

NOT A TRANSPLANT TRIBUNE MOVIE REVIEW

Remembering my pathetic restaurant review many weeks ago, I hesitate to start the Trib into the movie critic business. Then I will merely mention that we saw "City Island" last night at the Vine Theater. The Vine is a trip in itself, having been here in town for like, a hundred years or something. I distinctly recall coming out here from Fremont when Cherie and I started seeing each other, and that's quite a long time ago. With the opening of the multiplex downtown, the Vine went funky, showing off-the-mainstream movies and offering beer, wine, and food in the theaters and lobby. Quite cool, actually.

"City Island" is a low-budget picture with Andy Garcia starring. It was very enjoyable, in agreement with several recommendations and reviews we saw. Worth it for sure especially when it is on DVD, maybe it already is.

This is another intense racing weekend, including the famous 24 Hours of Le Mans, the Grand Prix of Canada, and NASCAR at Michigan. So while the rest of the populace has World Cup fever, I am just fine with my silly racing.

'Til the next one, I remain

Bob/Irv

Sleepless in Livereattle: My First Prednisone Party

THE SECOND SIDE EFFECT APPEARS

Now that I have a bit of a handle on the blood sugar thing, here comes sleeplessness. I got up like, maybe midnight, and started my usual stuff when this has briefly happened in the past. I finish up some dishes, read a magazine or book, look at mail and organize my morning meds. Then I usually return to bed and get a few hours of rest. But last night, there was no rest. I began to monkey with my new glucose meter, and it did not start up according to the manual. So I called the "24/7" user support number and got a recording that said "We are closed. Call back at 8:00 am Eastern Time".

So at exactly 5:00 am CA time I called. I got a brief ad, some automated questions to answer, and then elevator Muzak.....for over 40 minutes! I was mad as Hell; I have used Lifescan meters for years and never had this happen. Anyhow, about 7:30 I did get a nice real person who got me started correctly on the meter. I bitterly complained about Customer Service, and she sheepishly informed me 24/7 support had ended in January. This is so wrong for a device upon which diabetics rely at all times for accurate glucose measurement. If one cannot obtain a reading if a high or low blood sugar is suspected, at ANY time, what is the use? OK, sorry for the mini-rant, but it was maddening.

But hey, I am strangely awake and alert right now. I am ready for another swell day of running around town, and then making our merry way to tonight's TRIO get-together in Mountain View. Woot!,as my sister-in-law might exclaim.!

TRANSPLANT TRIB NOMINATES 2010 TRANSPLANT CAR OF THE YEAR, UCSF VERSION

Now for something a bit absurd (are you surprised?), we are naming the best car for transplant activities at UCSF. No suspense, of course you know it hasta be the Honda Fit. Every time I drive our Fit it appeals to me more. And although I am still deeply saddened that I blew up my trusty old Acura Legend, the Honda is a far superior choice for a lot of duties. For going to The City it cannot be topped, due to the size when parking, the handling, and the great mileage on regular fuel. Our Legend was quite large and gave about 20 mpg on premium. And yes. it is a Honda and I have had phenomenal luck with them ever since my first Honda CB350 motorcycle way back at UCSB. My only wishes might be for an "Si" version with about 50 more hp, disc brakes on the rear wheels (they are drums now), some fatter tires, and maybe the option of a sunroof. Oh, and sorry Leslie, for this work only the automatic will do. So the Transplant Tribune proudly suggests the Fit for all transplant candidates, recipients, families, and friends who must brave the wilds of the UCSF area.

Th-Th-Th-That's All Folks.

Bob/Irv

Hot Town, Summer in the City...the Parnassus Wind Tunnel

A brief recounting of today's medically-oriented activities, and then I will shut up for a day or three unless something of vital interest appears. OK?

OFF TO CONCORD

Had the usual excellent and productive visit with my outstanding endocrinologist at Muir, Dr. Anna C. She is quite impressed and pleased with my responce to the wacky blood sugars arising from the prednisone onslaught. I must admit careful carb counting, frequent testing and the input of the docs has made glucose levels tolerable. We made a few small insulin pump adjustments and I am good to go. The prednisone began it's taper today, so I will keep a close eye as the meds decrease.

THAT WIND TUNNEL

As we left our Fit to the excellent valet guy ("Well hello, Mr. and Mrs. Moss" he instantly exclaimed) the wind nearly ripped the door off. Being as it IS a Honda, there was very little real danger, but you get the scene. Windy, cold, blowing wispy fog and all that. Yech!

But at any rate, we were able to dispense with the Donor Specific Antigen blood draw at the lab quickly. We decided to dine at Palio and enjoyed a fine pannini before heading to the 8th floor of the hospital building for the ultrasound.

We appeared early for our 2:00 appointment to be informed we were half an hour late for our 1:00 slot. A small miscommunication, but it's all good. The procedure was quickly completed, however the tech did inform me there are still clots in my upper left arm from that ill-fated and totally unnecessary PICC line they put in me just before sending me home. The line was never used for any meds so this is a particular gripe. I have been taking injections of a blood thinner (Lovenox) for 90 days now. It is painful, ugly (major bruising and scar tissue) and HELL of expensive. Now the Team needs to tell me the next move, but I am thinking it's another few months and lotsa $$$$ worth of Lovenox in my future.

Pretty easy ride home to Livermoronville at least until the mess in Pleasanton which is unavoidable. But we are here safe and sound yet again, and that is a Good Thing.

Signing off for now,

Bob/Irv

A Good Omen Today, and a Busy Day Tomorrow

THAT GOOD OMEN DEAL

On the way to my weekly visit to Quest Labs I spotted a very nice Cobra going the other way. YES, I exclaimed just as a semi nearly wiped out the Fit as it made a desperate lunge into my lane. But not to worry, I got to the Fenton Funhouse and was greeted warmly by smiling staffers. My phylebotomist was quick, efficient and friendly. I left thanking that dude with the Cobra for my good fortune.

PROJECT PREDNISONE DRONES ON

Started this morning kinda high on blood sugar, then it dropped like a rock at cardiac rehab. Well, duh, dummy, exercise lowers glucose just like insulin. I know this but brain fade captured me. After juice, peanut butter crackers, and glucotabs my dear nurse Tina went to the cafe and bought me a turkey sandwich. I had to pass on my treadmill ride, but finally I left at an acceptable level.

I saw our friend Barbara C. from TRIO at the gym, and she asked me if I had CMV. I have no idea what that is, but at home I Googled it. It is hell of scary for transplant recipients, but again I could not understand the medical jargon. I emailed my Transplant Coordinator and she assured me I did not have this serious affliction. More Good Karma; thanks again, Mr. Cobra.

As I mentioned earlier, first stop tomorrow will be my Muir endocrinologist. A major effort will be put forth to get a better handle on this blood sugar ordeal, especially since the prednisone gets "tapered" down over the next several weeks.

Then off to UCSF for a DSA (Donor Specific Antigen) test. I tried Googling this too but all the articles were highly technical and I hardly understood a word. Then at 2:00 PM we have an appointment for yet another ultrasound, this time on my left arm. This will determine the condition of those blood clots I got in the hospital. I am very anxious to stop taking Lovenox, as it is $$$$ and the shots have made a complete mess of my poor abdomen. Originally it was to be 90 days and that is coming up soon.

OH, BY THE WAY

I got a message on Facebook today about a contest that would send me to NASCAR at Infineon this Father's Day on a VIP deal from Toyota. If you would be kind enough to vote for me, I thank you. It is at http://apps.facebook.com/promotionshq/contests/37008/invites/new

Pretty much covers it for the moment, 'til we blog again....

Bob/Irv

Predisone Predicament-Day 2

Briefly (I promise, really), the only indication so far of the prednisone increase has been uncontrollable blood sugars. I am trying hard to limit carbs, with moderate success. I have re-adjusted my insulin pump based on the directions of the weekend on-call endocrinologist. I am up to literally gallons (OK, that's a stretch) of insulin and I am somewhat concerned that my current Rx will not make it. I do have an endo. appt. on Tuesday in Concord, so we may be able to dial it in somewhat. Otherwise, no worries. No irritability, major hunger, hyperactivity, face-swelling etc etc.

Today, dear Cheryl will be joining Leslie over on the Peninsula to attend an event at Sunset Publishing. I have made the difficult decision (NOT) to pass on this one, and will instead complete my household chores, do some groc. shopping, prepare dinner and if possible enjoy a bit of televised motorsport. Tough duties, but someone hasta do it.

See? Pretty short, eh?

Bob/Irv

A Bright Spot from Friday

It was not all gloom and doom yesterday. Of course each day is a grateful one; grateful for my dear Cheryl, my donor's family, my own awesome family, my incredible friends, UCSF (although I constantly make jokes about them), etc. etc. the list goes on. One opportunity for uplifting entertainment for all transplant recipients, however, is simple and quite effective.

You may recall an earlier post featuring a picture of Yours Truly at Target or some similar place, wearing my UCSF hat low over my bulging (and badly scratched) free sunglasses. The mask completes the look very effectively. I wear this type of get-up in crowds, at health care facilities, and into stores of all types. Besides my own protection, I get a kick out of watching people, especially kids, react to me.

I have not had a lot of reactions, but yesterday at Trader Joe's I was approached by a little guy who was maybe three or four years old. We had a nice conversation:

Kid: Hey, how come you're wearing a mask?
Me: So I don't get sick.
Kid: Why?
Me: Because I have a brand-new heart (I point at my chest) and kidney (I point at, well, my kidney).
Kid: Why?
Me: Because I got sick and I needed new parts.
Kid: Why?
Me: I didn't eat the right things and I didn't exercise enough.
Kid: I eat the right things.
Me: That's great.
Kid: My Daddy has allergies.

At which point he walks away and returns to Mommy who is talking up a couple of other young Mommies. I must say I rather enjoyed it.

In just a few moments I will begin taking my megadose of prednisone. Please excuse me the next time we meet if I am really cranky, fat as a blimp, blathering constantly, or running around at 203 mph. It's the drugs talkin'

We'll speak later.

Bob/Irv

Bad/Good Omens, and Other Stuff

Looks like I may actually have some readers waiting anxiously for this post, so for them and all other interested parties, here is the Editor/Publisher's take on recent developments.

TWO LONG DAYS AT PUZZLE PALACE

During a sociable chat with the heart transplant coordinator Tuesday evening, she mentioned something about "the heart biopsy tomorrow". My blood ran cold, as there was nothing communicated to us about that obligation. But we ralleyed and made it to the cath lab as instructed at 7:30 am. NPO I might add. At 11:30 or so I walked into the procedure room. The deed was done, the follow-up X-ray was done, but alas, the doctor commanded me to stay two more hours to ensure I did not encounter any bleeding. Total biopsy time, about one hour. Total time spent in hospital, about eight hours. Two-hour return trip to Liverstein, priceless.

We already knew Thursday would be long, with two early clinic visits (heart and kidney) and a 1 and 1/2-hour cytogam infusion at 11:00. But wait...two additional tests were added late on Wednesday, a lung capacity test and a CT scan of the lungs. Seems there is a continued concern, totally justified, about my elevated pulmonary pressures. Despite aggressive treatment with ($$$$) meds it is still high.

Surprise! The clinic visit to heart/lung was way delayed, erasing the opportunity for the lung capacity deal. Caught up a bit with a pretty speedy Kidney Transplant office visit. Then off to the infusion which was delayed a bit over an hour. We ran back to respiratory to squeeze that one in but the tech was out to lunch until 1:00. Back to the infusion center, and a welcome respite while I sat with IV getting the cytogam. Had some lunch there, a Coke Zero and even enjoyed the company of Cheryl with me. She even caught a little "toes up" in my hospital bed while I marinated.

We wound up a memorable day with the CT (unfortunately heart/lung had neglected to send an order) which did end up going smoothly. Then another dash back upstairs to complete the lung test (no orders for this one either), for the Big Finish. We decided to get smart and had a nice dinner at Nopalito, a favorite from our 2000 Post days. While there a very nice woman with a tiny baby in a sling stopped to ask if I had been in 10 ICU a while back. Seems she is the Nurse Manager on that unit and she remembered me, telling me how great I looked now. That was hella nice of her. Still traffic but we made it home in, like, an hour and fifteen or so.

NOW FOR THE GOOD/BAD OMEN THING

I have this deal that if I see a Ferrari, Cobra, or Porsche 356, it means it is, or will be, a Good Day. I have to see at least three S2000's to accomplish the same thing. I never considered specific Bad Karma indicators, until Thursday morning. I heard Cheryl exclaiming loudly for me to come to the window and look at the Fit. I was horrified to see the largest, most widespread, pure white and totally disgusting bird crap I have ever seen. We are talking about either a VERY large creature here, a squadron of creatures, or a normal-sized offender with some unfathomable GI problems. I am not exaggerating one single bit; the main impact areas were on the hatch and left rear corner. But the spatter factor extended the damage zone as far as the roof, hood, entire left side, and even (yes!) INSIDE the rear door jamb. Such was the altitude, weight and velocity of the payload that it actually penetrated the tiny opening on the door edge. I mean our car went from Black to Dalmation in color. I did a quickie hose-off and we were off to Parnassus, at least minimally presentable.

Today I did see a Ferrari on my way home from errands, a black Mondial (once described as "Ferrari's version of an Olds"), not my fave by a long shot. But for the first time the Good Day thing badly backfired.

BAD NOOZ FRIDAY

Yes, I know this one is getting too damn long, but a lot of poop has gone under the bridge lately, so to speak. Results from the heart biopsy; 1R rejection. I feel like that poor pitcher who got robbed of his perfect game the other day. I had 100% no rejection until now. Then moments ago the week-long scrutiny of the kidney biopsy came in as Type 1 rejection. Bummer, doods, indeed.

So what can be done, you may ask? Glad you asked. No headlong dash to UCSF, so that is OK. Minor med change for the heart rejection, as it is considered quite mild. But, oh you Kid(ney). I must increase my prednisone anti-rejection regimen from the current 5mg per day to 160mg per day. Virtually guaranteed side effects are hyperactivity, irritability, extreme increase in appetite, foaming at the mouth (I made that one up)and a monumental rise in blood sugar. Oh frigging boy. I was on like 30mg right after the transplant and I was irritable, hungry and my sugars were constantly sky-high. I did manage to reach the weekend on-call endocrinologist for some advice, so it is gonna be a challenging weekend for my trusty insulin pump, glucose meter and me. Any health care professional, transplant recipient or general passer-by, feel free to suggest ways I may handle this situation without divorce, insanity or physical damage to anyone or anything.

OH YEAH, ONE FINAL WORD ABOUT A WORD: BIOPSY

Seems a few followers are quite spooked by the word "biopsy", equivalizing it with "cancer". Please remember it means a removal of a small portion of the tissue of interest, not necessarily concerning malignancy. As our Governator said in his famous role in Kindergarten Cop, "it's NOT a toomah!" So please chill, y'all.

So that is it. Isn't that enough, already?

Bob/Irv/Leo(?)

Too Tired to Blog

I will give RJ Tolstoy a break this evening and just give a quick update......we have spent 2 very long days at UCSF: yesterday for a routine heart biopsy which we expect will be as good as all previous ones, and today making our way all over the Clinic offices for a total of 5 different appointments. Being a transplant recipient (and partner) is really a full time job still.

After waiting nearly a week on results from last Friday's kidney biopsy, we were told today that the lab staff pronounced the results "equivocal". How's that for a non-answer? Basically they concluded that it's not the BK virus causing the rise in the creatinine numbers, and probably not rejection ("the cells are not typical of rejection"), so a different virus is being blamed. A new antibiotic was prescribed for a 2-week course to see if it does the trick. And we'll give that a try, as soon as the doctor is able to negotiate with our insurance company for a co-pay that's considerably less than the $2,000 we were quoted today.

For those who enjoy his wonderfully descriptive prose, RJ will be able to tell more about our 2-day odyssey in another post, from the cath lab Wednesday, to 4 different floors in the clinic building today. In the meantime, I hope this short note will enable the worriers to sleep well tonight. All is well.

Donuts I Have Known

Wait a minute, you are saying to yourself. This guy is a diabetic; what's the deal with the donuts? Truth be known, donuts have played a more important role in my life than may be generally known. I do not, in fact, recall the last donut I had. It mighta been one of those Krispy Kremes back when there were literally perpetual traffic jams getting in and out of the local outlets. Recall, however, that this booming success was short-lived and there are no KK's in our area any longer. What a shame.

Return with me once again to those well-remembered times when we enjoyed our stay at the beautiful campus at UC Santa Barbara. Although I have no first-hand experience in these matters, I have been told by questionable sources that many misguided UCSB students would occasionally (like every other hour) become a bit goofy after inhaling the smoke of a plant known as cannabis sativa, which I believe is Greek for "only dumbasses smoke this s**t", or something to that effect. I understand that one of the more frequent symptoms of this evil weed is a forceful need for food, and in particular, donuts seem to be a popular means to satisfy that need. I have heard hair-raising (when I had hair) tales of poor inebriated youths stumbling through the streets of that famous Student Ghetto, Isla Vista, with their destination a donut establishment known as Cuellar's. Scenes of many of these lost souls have been described to me; kids standing slack-jawed while staring endlessly at the display of those infamous holey little pastries. After a virtually eternal decision process, patrons were said to have purchased six or eight dozen and begin to lustfully devour them even before hitting the exit. There are even reports that the sugary booty would be shared, but more often than not the single purchaser would selfishly polish off the entire quantity. Many then proceeded to order up a few Shakey's pizzas and a coupla buckets o' chicken wings (delivery not available in Sector R, sorry) and continue the ceremonial gorging well into the wee, small hours of the morning. At least that is what I have heard.

My own donut experience was considerably less indulgent and drug-induced. I had just finished a particularly sloppy session in the painting studio when I dropped by the University Center cafeteria. I must say I was liberally covered with generous applications of oil paint on my already schlocky-looking jeans. I said to myself "Hey Bob/Irv, why don't you pick up a bit of a snackie, and then get rung up by that really great-looking cashier who you have seen while she dined at your dorm food emporium, the ol' Carrillo Dining Commons?" Suddenly I noticed a display of those irresistible round sugar and fat bombs, and I went out of my gourd temporarily and picked up one crunchy, gnarly looking cruller. I took it to the proper checkout line and nervously waited my turn.

I finally got to my target audience, and noticed that while I was clumsily fumbling around with my money this very nice young lady at the register was kinda looking at all the various paints all over me. I offered the unrequested lame-o response that "Uh, yeah, I'm a painter". Of course she assumed that meant like painting buildings or houses or some such nonsense, not learning to create breathtaking works of the finest art my poor beleaguered parents could financially provide. And naturally she musta thought "Geez, I hope this adorable, pudgy Jewish mensch with paint all over his schlocky jeans asks me out, and soon....NOT!" But that was merely a desperate dream on my part . Well, I should probably mention that the cashier was none other than our very own Cherie Cook, from Fremont, CA. So you fill in the blanks between that donut and this very day.

Naturally once again you are asking (silently, I hope, so as to not embarrass yourselves) "Yada yada, 'Ving but what the hell does this have to do with organ transplantation?" Glad you asked, thank you so very much. There exists a concept within Medicare Part D (Rx coverage) that is generally known as "The Donut Hole". It is a horribly complicated bunch of rules and regulations only a truly constipated governmental bureaucracy could squeeze out (sorry for the visual on that one). After a deductible, when you have used $2830 in total drug costs, you enter the mysterious swirling maelstrom of the donut hole. While you proceed through that hole toward the far side of the pastry, coverage ceases and all expenses are the responsibility of the patient.

When the total tab hits $4550, your imaginary 'chute opens and you hit (PLOP!) the other side of the hole. Taking humongous amounts of drugs is tolerable once again. The Sun shines, the birdies sing, the Sharks and Giants go on winning sprees etc. etc.; you get my drift. right? You go back to Barack O. payin' the bills, with healthy co-pays, but life is now peachy keen-o, as they say.

So let this serve as a Yellow Flag to any prospective transplant recipient or friend/relative; IT IS DAMN EXPENSIVE! Funerals are way cheaper but nowhere near as much fun. If you have a private insurance gig with no lifetime limits you are In Like Flynn (hey, did I ever mention my college pal Dave Flynn who was married to Jane Seymour? He was definitely In Like Flynn for a good while until a messy divorce came along). But seriousness aside, it is an important consideration. Otherwise it could be a most unpleasant surprise when the provider performs the inevitable "Wallet Biopsy" on you and finds you are hurtin' in that important organ (I'm talkin' about your left posterior descending money artery here). So buyer beware.

Can you all appreciate what donuts mean to Cheryl and I now? Although we are just now approaching the Dreaded Hole as we speak, please remember that a proper (boiled, not steamed) bagel has virtually NO hole. So, could you pass me the cream cheese, please?

I remain, as always, Yr.Humble Svt.

Bob/Irv

PS: Oh, yeah it is too late to start a post about today's events (June 2) at Puzzle Palace or the lack of information so far about last Friday's kidney biopsy. Stay tooned.

Lost Modesty and More Fun at the Lab

THE ADVENTURES OF MR. MODESTY

I seriously doubt that many of you know I was voted Most Likely To Be Modest at Louis Pasteur Jr. High (Home of the Passionate Pasteurizers) back about, oh, I dunno, 1964 or so. I don't think I even told my parents, that was how modest I was. I did have one serious transgression when my old college buddy Ted Gifford convinced me to accompany him to the local nude beach down by Montecito. After crossing a busy road, two sets of railroad tracks and jumping a small fence we were there. I recall being somewhat bored until I spotted one of my professors. His lectures never seemed the same after that.

It was soon thereafter that I changed my major from Mechanical Engineering to Art/Painting. This was partially motivated by my wish to continue to view undressed individuals, of many walks of life and of one of several genders available. There were a dizzying variety of shapes, sizes and age groups as well. This eliminated my need to patronize seedy establishments (like Little Annie Fannie's over on Hollister) to satisfy my unfortunate, immature and completely justified interest in, well, skin, I suppose.

Fast forward several decades to my last six years or so of hospital visits. Slowly but surely through one difficult situation after another the modesty factor has been pretty well eliminated. Everyone in a hospital is entitled by Federal Law to see any or all of your goodies anytime they feel like it. This includes every doctor, nurse, aide, maintenance guy and parking attendant who wants a peek. While in surgical la-la land, under the spell of powerful flak juice, I of course don't know enough to care. However now, whether or not I am mentally present or not. I really don't give a rat's ass who is looking. This occasionally freaks Cheryl out when I forget to pull the curtain or expose my tuchas out the 10Th floor window.

"Yeah, so what?" you are saying. I post this valuable info to anyone who may have to spend excessive time in hospitals, particularly prospective transplant recipients who are undoubtedly not told this by the professional transplant experts. It definitely should not be construed as a deal-breaker (there are plenty of worse features in the transplant experience) but forewarned is forearmed. Or something like that. You are most welcome.

A RECURRING HORRIBLE NIGHTMARE

I keep having this awful dream, at least once a week. I drive over to Quest Diagnostics (aka The Fenton Street Funhouse) for my weekly labs, plus anything new dreamed up by the fine folks at UCSF. I enter, place my (full) name on the arrival list (hey, where are those privacy policies?) and quietly sit down with my book/magazine. I am called to the dais and find the usual phlebotomist searching a stack of papers for my standing order. Suddenly the scene goes all wankey and the poor lady gets this wild deer-in-the -headlights look as the mess of papers fails to yield my weekly labs, which I have done every Monday since about April or so. I mention this fact and suddenly eyebrows are raised and whispering conversations between staff members ensues, I am certain involving unkind references to "that weird dude with the face mask", i.e. yours truly.

I am ordered to retake my seat. I am then summoned to the blood draw room and asked to sign a permission document. Leeches are attached and my precious bodily fluid is drained from me. I am taped up and bid a fond (NOT) farewell.

Then it hits me like a cold slap upside the head with a dead mackerel....THIS IS NOT A DREAM! No, it is painfully real, and I stagger to my car in a trance of some sort. I of course recover quickly from this trance (I would never drive under the influence of a trance, spell, or exorcism) and successfully make my way back home to my anxiously anticipated brekkie of, yes, French toast. To all prospective transplant candidates, try to avoid this organization. UCSF evidently has a Devil's Pact with these morons, so that is easier said than done. I must in all fairness report that I had to return a few moments ago to complete an additional, time-sensitive order that was done quickly and professionally. Well OK then, there you have it.

JUST IN FROM THE LATE-BREAKING NOOZ NOOZROOM

Just moments ago we were summoned to attend a heart biopsy (mine!) scheduled for 7:30 am tomorrow morning at the wonderful cath lab. Somehow, this had never been communicated to us previously. But off we will go, rising before the (butt) crack of dawn and lacking any form of nourishment starting tonight at 12:00 am. Yes, many of you will gasp "NPO" and you would be 100% correct. We will be mere passengers on the cath lab roller coaster, crashing and banging against the many surprises that are part of the unique nature of the schedule. There could be bumping (hey, just like Indy qualifying!) for sicker patients, computer issues, or it might just be lunch time for the doc so tough s**t, sucker. Read a book or listen to your stoopid music on your iPod. But really, the cath lab staff is wonderful, and I have been a frequent patron for some time now. They do the best they can, to be sure.

We will scare up a bit o' dinner now and quickly jam, pill and jump into the sack for an abbreviated rest. Then it is off in the commute traffic, once again to Puzzle Palace. And more of the same Thursday for a coupla clinic visits and the infamous Cytogam infusion. Return trip on Thursday should be memorable, as it always is. All part of Transplant World, and well worth it.

Bob/Irv