Dare we say "TGIF"?

Bob's surgery to repair his dialysis access graft in his right arm finally got underway last evening after 6 pm. Of course it took longer than expected - the doc told me there was a lot of scar tissue in that arm from previous repairs so it was challenging to get the new segment of gortex tubing in place. He was concerned that Bob might have been a little too aware towards the end of the procedure - the anesthesia doc was very concerned about Bob's weak heart, and started tapering off on the drugs before all was finished. However, Bob claimed to be happily oblivious of any pain or sensation during the repair job, and was groggily glad to see me (and wonderful Sandy C who kept me company all afternoon and evening) when he was done.

This morning when he called he sounded very good - was proud of himself for negotiating a "real" breakfast instead of the clear liquids that had been ordered. He will have his Friday dialysis treatment and then if the doctors give the OK, I can bring him home sometime after lunch. His arm is understandbly very sore today, but that is to be expected. Guess he won't be driving for a few days.

So we will try to restart the New Year on the right foot. It's back to UCSF next Thursday for the 3rd attempt at getting the stress test done that the docs ordered during his stay there last month. We will otherwise focus on keeping him stable and fit and ready for the transplant, whenever that miracle becomes possible.....he's now been on the transplant list for a heart and kidney over 17 months, never mind the several years of testing and appointments he went through to get listed. Anyway, we continue to hope, and so appreciate all the support of our great family and friends during this experience.

Waiting game.....

So here's the latest: Tuesday, RJ had his dialysis session in the morning as we'd hoped, so he got that excess fluid removed safely after the 24-hour delay and I for one felt more comfortable!(Did not want another onset of heart problems from fluid overload). He enjoyed many visitors in the afternoon and evening - even his former boss dropped by, since he is residing in the hospital where he last worked before retiring in 2005.

He was informed last night as his dinner arrived, that he could not eat anything after midnight and all day today, in hopes of a cancellation in the OR so his graft could be repaired. Needless to say, he was very unhappy and did not even enjoy dinner, knowing that for the 4th time in 2 weeks he got to go on the starvation diet again.

His worries were for nothing this time. No OR cancellations have appeared and his surgeon just called me (as I was typing this message) and said Bob can have the rest of his meals today, that surgery is now set for 4 pm on Thursday. Of course that means another long hungry day tomorrow, but at least it's something definite ( until something changes, that is). He has been doing fine since Monday's procedure except for some unexpected bleeding after dialysis Tuesday, which one of his visitors had the misfortune to witness. Now that he knows his schedule for the next couple of days, he can relax again with his books and visitors. With the Thursday surgery date we anticipate dialysis again at the hospital Friday morning, then I should be able to bring him home Friday afternoon if all goes smoothly.

Thanks always for everyone's good thoughts and interest. It helps both of us cope with all the ups and downs and sidewaysssss...........

Blue Monday

Hate to report this, but after a stellar week (starting last Wednesday) with Robert J feeling more lively and energetic than he has in years, he arrived at dialysis at 10 this morning to learn his access graft was once again clotted. The great nurses at the center got on the phone and reached his vascular surgeon's offce, and got surgery scheduled for 2:30 today. We dashed to the hospital by 12:30 as requested, then had to wait until after 5 for the OR to be available. Kind of a groundhog day for us, except this time he has to spend a couple of nights in the hospital too. The doc put in a temporary chest catheter access, then will repair the damaged arm access on Wednesday after a couple of sessions of dialysis in between. Dare we hope he comes home on Thursday? That's the current plan. Cross your fingers and toes that all goes as planned. He had successfully returned to cardiac rehab and was on the way to getting more active. We'll make that happen starting again on Friday!

It's Not Quite Over

We thought we were out of the fire but the Monday after New Year's I found at dialysis that my access had clotted again (it was repaired on Christmas Eve) making dialysis impossible. A vascular surgeon and an available operating room needed to be found quickly. John Muir Concord and Dr. Nagasetty came through and the graft was reopened late Monday afternoon. My appointment at UCSF that day was cancelled to do this procedure.

Early Tuesday morning I did my dialysis then we headed out to SF once again for the stress test that was cancelled last week. We were told upon arrival there was an emergency and that there would be a four hour delay. I had already been fasting since midnight so I was weak with hunger. So we rescheduled for next Tuesday and went home. On the way we enjoyed a late lunch at Eddie Papa's.

In non-medical news our old Acura (150000 miles) blew up last week . I am donating it to the American Diabetes Association. On New Years Eve we drove away with a new 2010 Honda Fit. We now have two of these in the family, Leslie got one a few weeks ago.

That's it for now. Happy New Year everyone

Happily home on the 28th

Well, turns out that the docs were not able to schedule the stress test for Monday morning as they had optimistically hoped, so after waiting all morning without eating, RJ was told that he would just have dialysis and then be sent home. I was able to collect him promptly after dialysis and dinner at 7, and we were home by 8:30 pm. The stress test is now scheduled for Jan. 5 back at UCSF. We plan to keep a very low profile for the rest of the year. Enough of hospitals for now!

I'm Still Here

Despite my current state of (temporary) well-being it appears I will be enjoying a couple more days of UCSF's famous hospitality. The cardiologists want to perform a chemically-induced stress test to ensure there has been no new damage since three weeks ago. Since tomorrow is again a dialysys day I will spend all day here and hopefully go home Tuesday. I have a long history of being in hospitals at New Year's, one I wish to end as soon as possible (like this week).

Is it still 2009??

Thought we were done with hospital stays for the year, but have had a couple of "bonus" visits this week. Our hero is currently relaxing at UCSF after having chest pains early on the morning of the 26th.....they did not disappear with the usual sitting or standing, so we drove to the ER to get him taken care of at the best possible place - the pain was not severe enough to make us try the local hospital. Once we arrived at the ER, the pain disappeared like magic - arrggghh. But lab work showed some irregular numbers so he was admitted and whisked away to dialysis right away to get his potassium levels back down and remove the always-dangerous extra fluid. I hope to bring him home today if all the medical minds concur.

The other bonus visit was a quick but tiring outpatient visit to Mt. Diablo hospital at 5:30 am on the 24th. Dialysis had to be cancelled on the 23rd when his access graft clotted. His vascular surgeon got it fixed promptly on the 24th, but his dialysis was delayed until that evening. It went well, but the extra day without dialysis probably contributed to the fluid overload. We are very grateful that we got to enjoy a wonderful Christmas day with our kids ( all 4!) and Cook and Caples families, especially getting to meet our new 4 day-old grand niece!

One more week in this crazy year...........we hope for a better one in 2010 - or at least not worse than 2009. And that goes for everyone! Happy New Year!

A Tale of Two Appointments

Thursday I had a visit with the hematology group prompted by my low platelet count during a previous hospitilization. Everything had been normal when I was discharged but a follow-up was required. It was obvious the two very nice doctors had not reviewed my records; they asked a bunch of routine questions before admitting they did not know why I was there. They apologized and let me go. Everthing was normal. At least I got to do the trip solo as Cheryl was in Long Beach visiting her Aunt Bessie.

Following day after an early dialysis we went to an appointment with the neurology folks. I had admitted to some instability which created an entourage of neurologists in my room while I was in the hospital. At this appointment the doctor remembered me and my situation. She very nicely proceded to inform us they did not feel it was Parkinson's. I never knew that was a possibility so I was both surprised and relieved. I am to contact them if I encounter any symptoms. This trip was unfortunately sullied by a 2+hour return trip to Livermore.

Thanks for the support and a Happy Holiday to everyone.

Deja vu....home again, again!

Once again RJ has boggled the docs and rebounded in record time. ( I actually overheard one of the docs, outside in the hall next to the room, saying to his colleagues "we're all scratching our heads over this"). They could not find a reason for this latest heart attack nor the elevated pulmonary pressures. Nor could they explain why the pressures dropped back to normal so quickly.

We arrived back home at 2:30, and he can enjoy a little time (unpacking his belongings) before I take him to an evening dialysis session at his usual place. Would rather he spent the evening at home, but the fact that the hospital's dialysis unit was unable to take him actually helped expedite his release....he has to have dialysis before the weekend.

All in all, quite a surprising week that ended well. He can light his first Hannukah candle tonight, and maybe I can finish decorating the tree, as we return to the holidays already in progress!

Thurs evening...........

Good news: RJ's pulmonary pressures came back down to good levels amazingly quickly. The current plan is for the neck catheter to be removed, then move him out of ICU this evening, and move him home tomorrow!
So far the catheter has been removed, so that much is true. Will wait for the rest to happen before reporting.

The doctor's explanation for this plan: his status could be elevated while the catheter is in, but there's a high chance of infection and low likelyhood of organs becoming available in the short time it's in. Since he recovered so well, he is happiest and safest at home. All in all we are very happy with this decision, and will stay prepared for whatever comes next.

Thurs. Dec. 10

Robert J is still resting comfortably in ICU. His doctors are busily working on a plan to get him more stable, and debating whether or not to request an upgrade in his status for a transplant. He was told this morning by the transplant surgeon that things are certainly getting more dicey, as his heart and kidney are working more against than with each other. Of course even if his status is upgraded, there is still the challenge of organs becoming available that are suitable for him - and more suitable for him than for others who are also waiting. In the meantime he feels as good as usual and his spirits are good.

Back to the roller coaster

Well, the plans for a carefree holiday month have taken a bit of a turn: last night around midnight I drove RJ to UCSF after he told me about a new chest pain that sneaked up on him earlier in the evening. ER welcomed us speedily, he was hooked up to oxygen, x-rayed and gave up some tubes of blood. Of course his symptoms were gone by time we arrived and he slept most of the night pretty comfortably. (I on the other hand was less comfortable on the 2 chairs with my blanket and pillow, but the peace of mind having him in the right hospital more than made up for the loss of sleep).


Bottom line at this point Wed. night: he did have a small heart attack last evening. He had cardiac cathaterizations on both the right and left sides of his heart mid-day today. No new blockages were discovered, but his pulmonary pressures were back to being way too high, after being corrected just 3 weeks ago. A catheter was put back in his neck for monitoring those pressures in his pulmonary artery.


He was then shipped up to ICU for tonight and had a dialysis session after arriving. He will be kept there several days from what I was told, while the cardiology team tries to figure out what to do to prevent this from happening again. We're getting better at handling the barrage of plans that change by the moment: maybe he'll stay for the long term, maybe he'll be stabilized and sent home, etc. .....whatever, we will roll with it and hope for a transplant sooner rather than later.

He has his cell phone if anyone wants to call - visitors probably should wait until Friday when he has regained more strength from the long procedure today. So we officially have no clue about what December will bring, other than hope!

December - time for home and holidays

I see that neither of us completed the last entry.....yes, RJ was successfully released from the hospital on Tuesday 12/1 and was back home before dinner time - an all-time record for getting away in a timely fashion, after a rare 1-night stay that did not expand into something longer!

We hope for just routine clinic visits this month, now that he has been so well tuned up and checked over. Other than the usual, he will also be seeing a Hematology specialist to follow up on his platelet count that was so low in November. He is also scheduled to see a Neurologist later this month, to make sure that his complaints of occasionally wobbly, uncooperative legs are not something we need to worry about.

One possible change in treatment is to add a 4th day of dialysis. The transplant team explained that it's crucial for his pulmonary pressures to remain low and his lungs to remain healthy, so that the new heart and kidneys have the best possible environment for success when they are transplanted. The additional time spent in dialysis is not something either of us look forward to, but knowing the reason for keeping fluid levels at a minimum will help us cope with the idea.

It was exciting to hear that 2 new heart transplants were done this past Sunday at UCSF, so we know the possibilities are still there for "our" turn. With every new diagnosis and hospitalization we worry about something happening that could be a dealbreaker for him getting a transplant - that's always a possibility. So as long as he can remain in the running, we will be as accepting and cooperative as possible with the additional appointments, treatments and specialists. We may need reminding of that when we start complaining, so feel free to provide us with a reality check at any time!

A Monday marvel

Happy to report that today's procedure went well. According to the doctor, it was actually boring - which was the best possible kind of procedure. Bob's previous bypass in his right leg was still doing fine, but the artery was narrowing above the bypass. So a stent was inserted and the process was over in just 2 hours. The long part of the day consisted of the 7-hour wait in the recovery room for..........no surprise here..........an available bed on the infamous 10th floor of the hospital!

As the one waiting in waiting rooms all day, instead of being the center of attention, I can only complain of being very tired. Otherwise I will happily return to UCSF tomorrow to bring home our hero, after a dialysis treatment. We are both relieved to get past this latest little hurdle and continue wondering when the call will come that organs are available. Hope on, hope ever.

Giving thanks, then back to reality.....

As Irving / Bob endures a late evening dialysis session after our Thanksgiving getaway, I will share the latest developments in his journey towards a transplant. Of all the doctor appointments last week, the one with his vascular surgeon on Monday packed the biggest punch: Bob has been having increasing leg pain while walking in the past few months, and the doc informed us that the bypass done in early 2007 appears to be closing back up. So we had to cancel some of the scheduled Tuesday appts last week so that we could spend all day at UCSF doing pre-op tests and paperwork, and will report back there at 7 am sharp on Nov. 30 so the surgeon can get a closer look at the offending leg. The hope is to repair it with a stent, but the procedure is happening in the OR with full anesthesia, just to be ready for more involved intervention. It's awfully soon from the last stay, but is certainly needed.

Knowing this was coming up made us more grateful than ever that he was well enough to spend the 3 nights with lots of family members in Capitola this week - 18 of us enjoyed hours of eating, talking, game playing, eating, walking, bike riding ( my brother and sister-in-law, not us!) and more eating. Irv was very content but extremely sleepy much of the time; the plus side of that being less exposure to all the food and drink available!He was very good, and limited his dining to very small amounts food, avoiding especially the dangers of too much sodium, potassium and phosporus (ie everything, potatoes, legumes, dairy products, etc). While the rest of us enjoyed all manner of beverages every day and evening, he kept his consumption of water to pill-taking and only small amounts of "recreational" drinking with his meals, indulging in a bit of his favorite, Coke Zero, only on Friday. Even with all his caution, his body retained nearly 5 liters of fluid since his last dialysis treatment on Wednesday morning.

We are most grateful for our fantastic friends and family, who give us support, laughter and stability when we get a little shaky. And of course, we are very thankful that his condition is not worse than it is, and very hopeful that he will receive new organs before next Thanksgiving rolls around.