A Weekend Well-Spent..So Far

AN OUTSTANDING EVENT

While basking over a sumptuous breakfast (expertly prepared by Your Editor/Publisher) we reflected warmly on what is a truly great three-day weekend. After much gnashing of teeth and pulling of (non-existent) hair the Powers of Parnassus allowed me to successfully attend the now-famous Henry 150, as described in my last edition. We enjoyed a lovely ride to Beautiful Downtown Clayton in our S2000 to the event. The combined birthday celebration was accompanied by outstanding food from Sean Taheri, and great tunes by Jack Pollard, Fritz and company. But nothing could exceed the enjoyment of being amongst an entire building full of great friends, many of whom were named Henry. I have been fortunate to have been acquainted with most of the Henry clan for over 40 years. Thus was created a fine evening of food, music, and (yes) dancing that was hard to beat. After another outstanding top-down, moonlit ride home we arrived to an angry and very hungry Lucy who had chosen to disregard our calls when we left and spent a long evening outside somewhere.

THE FAMILY CURSE STRIKES AGAIN

I bet very few of you know about The Moss Family Curse. No, I am not talking about the "Never Darken My Doorway Again Syndrome" that has alienated us from more close relatives than I can count over many years.This one is simply an alarming propensity to experience crippling car trouble early on three-day weekends when no solution is available until Tuesday, maybe. This has struck Cheryl and I with various vehicles in far-flung locations for many, many years. A particular favorite involved a motorcycle, insufficient fuel and the return from a sprint car event at the old Ascot Park Speedway in Torrance. After a turn-down from AAA ("sorry Mr. Moss, we don't do motorcycles") we hoofed it a long way to and from a gas station in, I believe, Seal Beach. We finally made it back to our humble Santa Ana residence at, oh, about Oh Dark Thirty in the morning.


But I digress...as usual. This time we escaped the curse but evidently it has been inherited by Andy and Linsey. Seems Linsey experienced some extreme driveability problems on her 4-Runner. And of course it is unlikely to be remedied in time for a very complex weekend schedule of work and other duties. We have yet to know the exact outcome, but will you kiddoes accept my deepest apologies for handing down this awful affliction? Thanks.

So again I have strayed from my central theme of transplant news and advocacy. Sorry (NOT) but perhaps you will enjoy a bit of Lite Entertainment after all the kidney blather of the last coupla weeks. And now back to the rest of yesterday's races, pre-recorded for my express enjoyment! See ya.

Bob/Irv

And Now to Enjoy the Weekend

Another hair-raising chapter is somewhat complete in this epic tale of transplant adventures. After enjoying a pleasant morning of Peet's best, French toast (at last...thanks TJ's) and our kitty Lucy we are about to set out on a few errands in preparation for one of our favorite (OK my favorite) weekends of the year. Featured will be viewing of the Indy 500, the Coke 600, and the Turkish (?) Grand Prix. Foremost, however, is attending the soon-to-be-famous Henry 150 celebrating the combined birthdays of Daniel and Mary (Mom) Henry. Fun ahead!

Starting Tuesday we have another semi-busy week of mixed medical obligations. Prime amongst these will be the determination of what exactly is causing these kidney problems and what the course of treatment may be. Thursday will be fully spent again at Puzzle Palace of Parnassus at kidney clinic, heart clinic and another cytogam infusion.

But for now, "let the wild rumpus begin"!

Bob/Irv

It's 6:00 PM...Do You Know Where Your Biopsy Is?

You don't? Well, neither do I. And unfortunately, neither do the docs, at least partially. Apparently the full results will not be available until Tuesday. There are two possibilities; either mild rejection, or nephritis from the BK virus. For rejection there would be an increase in steroids possibly via IV but not necessarily in-house. If it is BK (which seems more likely) there would be addition of another viral IV drug that could be administered at home via a home infusion service.

So what, you are wondering, happens between now and Tuesday? Luckily for your Editor/Publisher and the entire Transplant Trib staff (of one), cooler heads have prevailed and I will be summarily dismissed sometime between now and, say, midnight. Maybe.

In this case the cooler head belongs to this week's kidney transplant attending Dr. who left last Thursday believing I would have the biopsy last Friday, lose the catheter and go home happy. It was his Friday replacement who totally changed all the plans and sent me home WITH Mr. Foley but WITHOUT a plan for removal and relief. There were four wasted days of labs, calls, doubt, misinformation and misery for Yours Truly. Poor Cheryl had to endure one hellish week with a disillusioned, confused, irritated and very tortured transplant recipient around the house. More credit to her once again for hanging in with me. '

I will also add that I have not had more inconsistent, inattentive, and just plain lost nursing personnel than here on 9 Long. The aides and RN's were the worst in responding to the call light than I have experienced anywhere here or at other hospitals. Even poor little Community Hospital of Long Beach, fer cryin' out loud. And although I was promised it last night, I failed to receive my beloved French toast this morning.

So we are currently cooling our heels (just exactly what does "cooling your heels" mean?) waiting for orders and now shift change to get the paperwork done. Well, my (very nice) roomie has left so Cheryl and I are both rather enjoying a nice early evening while the Bridge and 580 rage on. We will wait out the traffic and head happily home to what looks to be an extraordinary holiday weekend.

Happy Memorial Day,

Bob/Irv

Hopeful Friday

So far, so good today. Mr. Foley was bid a not-so-fond farewell last night, and there is no wish for a return engagement! The kidney biopsy took place as scheduled this morning around 9 am, and Robert J is resting comfortably back in his room with a 10 lb bag of sand on his abdomen to make sure that little kidney incision mends quickly. Now we wait for the lab results with crossed fingers.........news will be shared when we have it, later today possibly. TGIF!

Settled into Our "Other" Home Now.....

We were just talking the other day about how quickly we get comfortable with life at UCSF. Each time RJ checks in, he settles in faster. We thought when he went home after his 19-day visit in March that we would not be back right away, but here we are again for the second stay since then. And even though he is on the 9th floor (specializing in kidneys and livers) instead of the 10th (specializing in hearts and lungs), the routines, amenities and floor plans are nearly identical so we feel quite at home.

He has his area of the room all set up,with slippers, book, magazine and toiletries nearby, has talked with the nurse to make sure he can get his French toast tomorrow morning, has requested soap and towels for the evening clean-up, and has plugged his cell phone charger into the nearest outlet. I of course have the laptop fired up, verified that the room has great cell reception (yay) and dragged in an extra chair for visitors. The only complaint so far today is that it's not a single room. However, the other bed is empty so far, so that may not be an issue. And it is a beautiful back corner room with huge windows, so we are surrounded by beautiful trees and (currently) bright blue skies.

Of course the plans continue to change. Instead of getting that kidney biopsy right away (the reason we showed up today, right?) it is now scheduled for early tomorrow morning. We were assured the results would be available right away and that delaying the procedure will not delay finding out results and the subsequent treatment plan, if one is needed. One thing that is definitely hopeful: the elusive Urology docs were tracked down and they are granting a trial separation from Mr. Foley, beginning tonight at midnight, strangely enough. However, the past 10 days have been far more miserable for RJ than he has let on, so he will welcome this event regardless of the timing. Hopefully it becomes a permanent separation. Enough already with the discomfort, never mind dealing with repeated equipment malfunctions that resulted my doing more laundry, way more frequently, than I like. And that's all I'll say about that.

Stay tuned for Friday's news. We reeeaaaaallllly want for him to get out of here by Saturday. This weekend's Indy 500, F1 race and NASCAR events can always be recorded for later viewing. The big deal is that close friends are having a huge birthday bash Sunday evening that we've been looking forward to attending for several months, and missing it would be devastating. So we are totally focused on good news, asap!

On the Road Again

Very briefly, we are headed out the door once again to UCSF. Apparently my labs from yesterday showed no improvement in creatinine so it is biopsy time. This will certainly include an overnight stay, but there is a chance I could get this catheter situation resolved. This time I will be on 9 Long, the kidney floor.

See everyone soon,

Bob/Irv

(Ruby) Toosday Noozday

STRANGER IN A STRANGE LAB

Fast action on the kidney front this week. I was to obtain stat labs yesterday morning at my local Quest Diagnostics facility here in Livermont. I was as always quite nervous about this since this facility is the rudest, least organized and seemingly inefficient example of labs that I have seen. The addition of two tests to my weekly standing order caused slow-motion mayhem. Suddenly all sorts of personnel were moving in super slow-mo with lab orders seemingly filling the air everywhere in the office. Wildly wide-eyed, they floated slow-motion orders and accusations at each other while I stood in stark amazement at the scene. Finally I was brought in for my blood draw, and after more head-scratching (their heads, not mine) it was done.

MORE (OH NO!) TALES OF FOLEY

Yeah, you are as sick and tired as I am about more Foley whining. But you aren't the one wearing it, and I am, and "it's my party and I'll cry if I want to" so there. Anyhoo, my return to cardiac rehab was much better than I anticipated, but it definitely was noticeable to me that I had my pal along for the walk. The rest of the day was everywhere from uncomfortable to excruciating despite "adjustments", pain meds and complaining to my poor wife. My goal yesterday was to schedule a removal at UCSF either tomorrow or Thursday while we are there for other stuff.

I called my wonderful Heart Transplant Cordinator for some ideas and she said Urology ordered the catheter to stay in 10-14 days. Ten days is up tomorrow, but she told me I would need to contact a urologist since the heart folks are only responsible "above the diaphragm" This cracked me up. She advised me to check with Kidney Transplant whose jurisdiction starts at the diaphragm and goes South. Too far South and you cross the line into Urology's territory. Any further South, well, you better call your podiatrist cause now you are in some serious trouble. Maybe after that it falls under the Border Patrol, I dunno.

AND NOW THE LATEST

This morning the Kidney Transplant PA called us and told us the creatine from yesterday was better, so no biopsy and overnight stay tomorrow. Still not good enough so I will attempt another expedition to the Caverns of Quest for more sampling of my fluids. A decision about biopsy will be made Thursday when we will be there anyway for Heart Clinic. She will contact the urology folks about my concerns re: Foley, so some relief may be near.

So thankfully that is it up to the moment. Oh yeah, by the way, Leslie sent us a link to a blog that her old high school buddy Josh Cooley does. He was quite the artist and musician and now works at Disney/Pixar. Check it out just for a yuck or two. It actually is spectacular to look at. http://cooleycooley.blogspot.com/


Bob/Irv

Home Safe and Sound

Don't want to leave everyone hanging........we did manage to depart UCSF around 4:30 Friday afternoon, and actually made it home shortly after 6 pm - not bad for a Friday evening! We are in the process of adjusting our routine to accommodate the slightly different prescription dosages, and of course the care and maintenance of Mr. Foley (as well as Foley Jr, the more discreet version for when RJ is out and about). His main goal at the moment, besides continuing the fight against the infection, is to catch up as much as he can on his auto racing backlog on our DVR. And now that my daily commute to SF is over, I will devote the weekend to catching up on my work. All is well again!

It Happens When It Happens

Maybe Yogi Berra said this or maybe not. Whatever. But I am saying it as I report that today's rescheduled kidney biopsy has now been tentatively re-rescheduled for next Wednesday (maybe). Seems the kidney docs are still concerned with bleeding even though I stopped my blood thinners yesterday. So we will journey home to Livertown sometime or other today and do the specified labs there on Monday. Unless a miraculous reversal of fortunes on my creatinine occurs over the weekend, I will return here to Puzzle Palace for the biopsy. I will have an overnight stay and hopefully back home Thursday. Cherie is currently en route as we speak to gather me, my stuff and Mr. Foley for the homeward trip.

TRANSPLANT SUPPORT GROUP AN EYE-OPENER

I schlepped down the hall yesterday (with Monsieur Foley) and Cheryl joined me for the Heart/Lung Transplant Support Group meeting. The room was jammed with folks interested in the speakers; two donor family coordinators from California Transplant Donor Network. They are responsible for communication between recipients and donor families who choose to learn about who their loved one's organs have helped. We were told it is extremely rare when the family does NOT want more information. So we now have a procedure and guidelines for writing that crucial first letter, and CTDN organizes all the subsequent steps.

One of the attendees was a heart recipient whose guest was the mother of his donor. They had started communication some time ago and have developed quite a friendship. The mom actually moved to CA from OH to look up all of the five people who had the gifts of organs from this young man. Her views on transplantation from the donor perspective were interesting and quite moving indeed. We will be starting the process soon as of course we are curious and hope my donor family may be as well.

AND YET ANOTHER FOND FAREWELL

So I now will pack, get dressed and wait for both doctor orders and my ride home. As always I know it is not "Good Bye" but "Catch ya Later".

Bob/Irv

Day 6: A Ticket Home At Last?

TGIF - we think! For those of you who missed Bob's little note added to the end of my post yesterday, here's the plan: He will be heading for the Radiology Dept around 9 this morning, where a biopsy of his new kidney will be done. We're told it's a quick and simple procedure, but the recovery part is long. He will need to lay flat on his back afterwards for 4 to 6 hours so the small incision in the kidney completely heals. If the docs are satisfied with the biopsy results (available around 4 pm, he was told) then I will be able to head back to Livermore tonight with my favorite passenger, instead of alone, for the first time in a week. I did not hear the procedure plans directly from the team, but my understanding is that the kidney folks want to make absolute certain that this week's symptoms and issues are not a result of rejection of the kidney, since they are extremely similar to the BK virus symptoms.

Not sure what tune we can sing to this procedure........"Take a little piece of my kidney" just doesn't have the same ring as Janice Joplin's classic. If we are lucky we can work on that part of the proposed "Robert J's Transplant Soundtrack" as we crawl along the freeway in the Friday evening traffic tonight. Stay tuned for an update!

Day 5 Update from the Peanut Gallery

I arrived at the hospital yesterday to find a very quiet and subdued Robert J. He told me that for the first time in many weeks, he was feeling bummed and a bit negative. He has done so well, and has been so happy since getting home in April - this setback that's threatening his new kidney is hitting him hard at this point. I'm sure the emotional ups and downs are to be expected, but hate to see this temporary turn away from the cheerful optimism and good humor that we have all been enjoying.

Late yesterday Dr. Majure told us that they are now pretty certain that the main culprit in this infection is in fact the BK virus. Since the drug to treat it is already being given, and is in pill form, it's likely that RJ could be sent home as early as today to continue his recovery. However, this morning's early news is that his kidney lab numbers are going in the wrong direction again, so the teams are carefully considering the next step. Home is still a possibility if local lab work can be arranged to be done frequently enough to keep close tabs on the kidney function.

I'm heading back to the hospital for this afternoon's monthly transplant support group meeting, and to bring RJ home afterwards if we are so lucky. The meeting topic is going to be about how and when transplant recipients can contact donor families to express their gratitude, and we have been very interested in attending this session for some time. Maybe it will help us focus on the big picture again, and get past the frustration of this current challenge. After all, our life is far better now than before the transplant, and as I remind my husband (more frequently than he cares to hear about), we have not gotten this far for nothing!

But Wait, There's More! Late-breaking nooz from your Editor and patient, here. Just had a flurry of Dr. visits. First one with the heart guys had me home today keeping a very close eye on myself and continuing on meds. The nephrologists, however, are thinking a kidney biopsy is in order first. That will take place tomorrow morning. There is a five-hour recovery period and after they get results I could possibly exit in the afternoon sometime or other. So that's the latest.

Hey, How's Yer Wednesday?

Good, I hope.

I am chillin' with my arch-enemy (Wong!) Mr. Foley after a fine but complicated shower and shave session. In an effort to better know my opponent I was able learn that Mr. F. was first designed by surgeon Frederic Foley when he was a medical student in Boston in the 1930's. When his device was first manufactured, the C.R. Bard Co. of Murray Hill, NJ named their product after the good doctor. And it has been all success and high-fives ever since. Thank you, Doc; yeah, thanks a LOT Doc.

Not long after my Breakfast of Champions this morning the Physician Entourages began. Infectious Disease docs have been included to ascertain what the infection in my blood actually is. Then they can treat it with the absolute correct antiobotic. There is still too much going on to do a biopsy, and that is why I am still here. The Nephrologists just this moment visited to tell me it is the same infection in my blood and my urine. They are deferring to Infectious Disease to make the final ID and specify the antiobotic.

Cherie is on her way here now from a meeting at Peak Travel in San Jose. Leslie and Chris may drop over sometime today. My bro' Garremo spent last evening here. I have watched Iron Man and a James Taylor solo concert on my trusty DVD player. Nothing else is in the works unless this clears up fast and they are able to do a kidney biopsy.

So there you have it!

Bob/Irv

The Nooz Is Coming So Fast I Can't Blog

Just had a visit from the Heart Transplant Team. Even though this a kidney issue, Heart and Lung still "own" me. Today my kidney function has deteriorated a small bit, so they will be keeping me "for a few days" to keep close tabs on treatment and results. Drat! They are still not trippin' so neither am I. So Cheryl will stay home today and probably drop up from her meeting in San Jose tomorrow. This means cancelling appointments and missing more cardiac rehab.

And so it goes.

Bob/Irv

A Brief Look Back One Week

There were several significant events that took place last week. I had promised to share those on Saturday morning but this little kidney adventure got in the way. I feel fairly decent this morning so I am gonna give it a try.



A MIXED BAG O' MEDICAL STUFF



Features included a trip to the podiatrist for chronic heel pain and some niggling toenail bothers. He suggested a set of orthotics for the heel problem, since my feet are flatter than a cloth-filled pancake. Some expert snipping took care of the toe deal but it is only a stopgap. The next day I was happily reunited with my former Muir nephrologist, who I had been seeing for about 10 years before starting dialysis. He was the one who first referred me to UCSF for a kidney transplant, so he has had a large influence on my kidney treatment.



Thursday we were informed by the kidney folks that my test for BK virus had come back positive. This is a potentially dangerous infection for anyone who is immunosuppressed. So kidney recipients are at a high risk. Over 80% of the general populace are infected, but the vast majority may never know for their entire lives. I started an antibiotic immediately and had a couple of my rejection drugs reduced by a small amount.



Friday we were getting an AlloMap at an office on Van Ness. This is a non-invasive alternative to biopsy which is considerably more pleasant and, I am told, cost-effective. Then it was off to Parnassus for a VQ scan which is a nuclear study looking for clotting in the lungs. We were informed quickly that this one was negative.



Everything went bass-ackwards early Saturday morning resulting in our dash (no panic this time) to the ED and ultimately here to 10 Long where I am composing this. No visit from the docs today as yet but going home today was mentioned. We shall see.



AN EXCELLENT ARRAY O' NON-MEDICAL STUFF



Last Tuesday we indulged ourselves in yet another musical event at the Sharkie Tank. This time it was James Taylor and Carole King. Despite some shortcomings in the sound quality, the show was beyond terrific. They played everything we coulda hoped for. The seats were very close to the round, rotating stage. It was a very emotional reminder of Cheryl's and my early dating period as well as our Shinn Park wedding.



After the nephrologist on Wednesday we picked up Sandy Chaw and headed for Berkeley to begin this stage of The Celebration of Mother's Day. We were joined by Leslie and Chris for lunch and a leisurely drive up Hwy. 1. We goofed around Point Reyes Station, then to Tomales for a big mess o' oysters. On the way south Chris snagged an upscale hunk o' tri-tip and we headed back to Berkeley to meet up with Allan.



As an aside here some know my aversion to oysters, in fact I do not recall ever eating any. It could be said oysters were not a part of the Ruth B./Walter V. nutrition plan.



Of course Chris and Allan expertly BBQ'd 'em (no raw fish for me, Transplant Team) and doggone it, they were quite tasty. The Tabasco and Leslie's horseradish sauce helped as well. And I just this second asked Dr. M. if there is any evidence that ingesting these little dudes had a part in my latest medical crisis. After he stopped laughing, he simply said "No, unless they were raw". The whole dinner was quite spectacular and a most fitting tribute to both Moms.

So now we are somewhat current. I apologize for the rather mirthless tone of this post, but hopefully you will cut me some slack. Or maybe it's no biggie for you. Whatever.

Oh yeah, Blogspot has been acting very strangely today. I have no idea why a lot of this is highlighted in yellow, and less of an idea how to fix it. But hurray I did find the way!

Bob/Irv

Live from the 10th Floor, Day 3

Here's the scoop today. Robert J is busy watching Iron Man on his DVD player right now, obviously too busy to update the blog! While no absolute answers have been given yet for his infection, there are still a couple of possibilities that are being agressively treated with IV antibiotics. He is feeling much better today, his temperature is closer to normal, and his kidney numbers are coming back down into the correct ranges. He might even be able to go home Tuesday if this trend continues. Unfortunately, Mr. Foley may be going home with him for a couple of weeks, since this infection may have developed as a result of occasional "standing water" in his bladder. I'm not sure if Mr. Foley is designed to correct this situation or to just ensure that it doesn't happen for a couple of weeks. Unfortunately Mr. Foley is the cause of the most discomfort at this point, but such is life. Every day since the transplant is better than before, regardless of occasional pain or setbacks, so we won't complain!