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!