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.

Back in Bizz

Hi everyone and thank you for your interest in reading this. Most everything is back to normal except for the aforementioned bleeding at dialysis. Today's issue was low blood pressure which necessitated Cheryl coming to get me. We are chock full of appointments the next few weeks including hematology, neurology, cardiology, vascular surgeon and even a guy who is showing me how to use my new sleeping mask.

We are looking forward to our annual trip to Capitola for Thanksgiving. Looks like the weather will be nice and there will be plenty to eat and drink. I wish a fine Thanksgiving to everyone.

Bob/Irv

Nov. 18: Enjoying life at home

I was hoping Bob would feel inspired to update his story after getting home from the hospital, but, not surprisingly, his energy is a bit on the low side. So I will report that things are calm. We had a great visit from Leslie Tuesday afternoon: she needed her dad's expert opinion on her search for a new car. Even after cancelling most of his car magazines, he is still more of an expert than the rest of us, and immediate family members do not consider buying a car without consulting him.

Yesterday he returned to his normal dialysis center. All went well for the first 2 hours, then his arm started bleeding and the treatment had to be stopped. Since I had insisted on driving him, he had to call me to come get him early, since they could not resume the treatment after stopping it. It still took another hour after I arrived before the bleeding stopped, so instead of leaving early, it was later than usual AND he has to return for other 2 hours of treatment today. So we figure his platelet count is still too low....

The rest of this week and next is full of miscellaneous doctor appointments and then we plan to head to Capitola for the annual family Thanksgiving getaway, if luck is with us! I don't expect to have news to share every day, so please assume all is well if there is no new post.
Thanks for following this loooong, slooooow story - we hope along with everyone else for a happy ending sooner rather than later!

Nov. 17: Home sweet home!

Quick note to share that we left the hospital together around 8 pm Monday night, and were back home in time for the 10 pm news! Heading out for errands this morning, but I expect RJ will post his own thoughts later today. We're very happy for this return to life in Livermore!

Coming home?

Bob just called and said his "entourage" ( aka the cardiology/transplant docs and coordinator) just checked him over and said he can come home this evening after dialysis!!!! I believe my schedule is clear to drive back to the city and collect him! They want him to consider doing dialysis 4 times a week on a regular basis from now on, since he is obviously so sensitive to too much fluid (= dangerously high pulmonary pressures). Not something he's thrilled about, but unless he absolutely stops consuming any liquids at all, how else can he maintain?
This man needs a new kidney and heart!

Nov. 16 - A new week begins

It looks like RJ will not be coming home today, although his nurse reports that his platelet count is higher today than yesterday - yay! He is scheduled for dialysis again this afternoon, which is why I am assuming he will be spending the night again afterwards ( based on previous experience). However, I would love to be wrong about this, and will update later if there is a change of direction.

Nov. 15: A new challenge

It's probably no surprise to hear that Bob is still hanging out at UCSF, but he did get moved to a regular room on the 10th Floor Saturday afternoon. He is delighted to have a single room, and even has a nice view looking out over the city and Bay. Everything seemed to us to be moving in the right direction, until we learned that his platelet count (essential for blood clotting) has drastically decreased since he entered the hospital Monday night. Daily lab tests have shown the count going lower each day, but it was not mentioned as a concern ( in my presence, at least) until yesterday afternoon. So the word this morning is that he would be ok to go home except for this platelet mystery, and therefore will remain until his counts start trending up. This morning the count was lower than yesterday, so he stays put, and a Hematology doc has been added to the team of people working to get him back to some kind of normal.



On the plus side, he has some visitors coming by today, and is looking forward to watching at least part of today's Nascar race in Phoenix, on the miniature tv in his room. And.....looks like he gets a day off from dialysis after 6 days straight, which he is very excited about. He says he feels fine - just as he did a week ago. He just does not feel the effects of all the things going on in his body.

He does have his cell phone available for those who want to hear how good he sounds, compared to what I'm reporting. We will hope for word of release tomorrow or the next day.....

Nov. 14 report

Well, those who bet on Bob getting out of ICU Friday and into a regular room have lost their bet. No big surprise that there are still no empty beds available on the 10th floor as of this morning. The docs did remove the neck catheter that had been so uncomfortable ( since they are finished with the intensely fine measuring of his pulmonary pressures for now) so he had a much better night's sleep Friday night. In fact, he slept so well that he woke up late this morning, only to find no breakfast tray. He admitted that he got "very unpleasant" about that, assuming they were withholding food again in preparation for some new procedure. After getting all riled up, it turns out his nurse was just holding the tray until he woke up, knowing he really needed the sleep. No wonder she was not too warm and friendly with me when I called to check on him later!

The plan is still to move him out of ICU today, but I doubt it will be all the way out the door after being down this long. He's having a record 6th day in a row of dialysis again this morning. I will be bringing "going home" clothes with me this afternoon just in case.....but most likely will not need them yet. I do look forward to walking around the hall with him - he got to do one walk last night and tells me it went well.

Thanks as always for your caring and support. I think I've got my mojo back after getting a little blue over the past month. We will just keep plugging along until all the stars are lined up for a transplant to happen.

Lucky Friday the 13th?

Latest news from our hero in the hospital this morning is positive.....his doctor told him they plan to move him out of ICU and back to a regular room sometime today. And then I may get to bring him home tomorrow! (Loyal readers know by now to not make any substantial bets on the odds of this actually happening, but we can hope!) He will undergo dialysis again today, for a record 5 days straight, since it seems to be really helping bring down his pulmonary pressures. The new medication is also doing its job.

He said he did not sleep at all last night, so we'll ask for visitors to continue to hold off - hopefully the visits can be at our house after tomorrow - stay tuned!

Progress, clarified

Cherie here again - from the feedback I'm getting, I realize that my previous post was clear as mud. I am not nimble enough on my iphone to really get my point across from the hospital room, so will try again from the comfort of my home computer!

Bob is making progress with this current challenge of unacceptably high pulmonary artery pressure. The extra dialysis is making a difference, as is a new drug that was started last night with increasingly larger doses being given. Things change by the moment, and every doctor visit brings new ideas and information - not to mention all the collaborating that goes on out of our earshot. This is a huge teaching hospital, after all, and there is no telling how many brilliant young doctors are weighing on with opinions on every little change in Bob's condition.

He will continue to stay at least tonight in ICU. We expect him to be moved to a lower care-level unit for a night or two before being sent home, if that in fact happens.....yesterday's pronouncement of being kept indefinitely was modified today, so we won't know until something is decided.

Bob's spirits are good considering all the uncertainty. Other than not sleeping well with all the ICU commotion around him, he's comfortable and positive. We came up with a imagery scenario for him to focus on -we all know how Not touchy-feelie he is, but he agrees any help, mental or otherwise, is useful. So he is picturing all his organs and arteries functioning strongly and smoothly like a well-tuned engine - everything flowing the way it's supposed to in a fine automobile. Which kind of automobile will probably vary depending on his mood!

That's it for today ~

Making progress

Here's today's progress so far:
I got to the hospital in time to hear Bob's doctors being pleased with seeing his pulmonary pressures coming back down. They explained that until the numbers are acceptable, a transplant is not possible. To help with this challenge he has been given dialysis for 4 days straight now and has had over 8 1/2 liters of fluid removed!
In the mixed blessing department, he may actually be sent home after a few days rather than stay in the hospital, but that also means staying at a lower priority for organs. So we shall see how it goes. Thanks for all your support and encouragement!

November update from Bob's other half

Well, that follow-up right heart cath did not go as we hoped on Tuesday. Instead of Bob's pulmonary pressures being lower after an extra session of dialysis, they were actually higher than the week before. So he is being kept in ICU with the catheter in place for a "couple of days"
(in hospital time of course) while they re-test the pressures and try different drugs to try and treat this serious problem.

The most mind-boggling part of the news he received Tuesday evening is that unless this condition can be somehow controlled, he is likely to remain in the hospital on IV drugs until he receives the transplant. This news came from the doc in charge of the heart transplant program, so it's pretty official. We have always been aware of that possibility, but it's certainly not what we hoped for......Bob living in the hospital indefinitely. He was even visited by the highly-esteemed transplant surgeon, who told him that a transplant was the only way to improve his health, as they have exhausted all other options.

We are in the process of trying to wrap our minds around this turn of events. I always take refuge in looking for the positives as a way to rationalize something upsetting. Obviously this would put him at a higher priority for organs than ever, so maybe this wait ( 15 months on the list now) will have a happy ending soon. And other than the many dangers of infection from being in a place with lots of other sick people, he is safer there than at home with his heart so very weak.

Amazingly he says he feels fine physically - although I think his version of "fine" is far from what the rest of us feel. We will try to update more often now that things are going in this exciting ( scary) new direction, and when he's able to have visitors we'll let you know. Thanks for all the positive thoughts you care to send!

November News

While hacking my way through a mild case of pneumonia (see above) I was scheduled for a sleep study. We went out to the sleep lab at 10:30 pm in my jammies and got wired up all around my head and neck. Luckily there was an open room that enabled Cherie to stay as well. I don't feel I sleep much but I guess enough to indicate I am suffering from sleep apnea. The treatment for this will be a breathing mask I wear while sleeping to promote steady breathing through the night.

My cardiologist determined I was due for my periodic right heart cateterization. This is a pretty fast and easy procedure but my results were not up to expectations. We will be heading to UCSF
Monday night to be admitted for a dialysis and then another cath on Tuesday. Hopefully second time is the charm.

Everyone else are doing great though I hope Cheryl can get a little mini-vacation here pretty soon. She is losing her mojo and as you know this never happens.

Regards and thanks to everyone.

Bob/Irv