Fun Sunday (cont)

I do notknow what happened to the first part of this post.....sorry.

As I was saying I was checking out my email, Facebook and timing and scoring for the Daytona 24 Hr all at the same time. I had The Stones on with my headphones when the docs arrived. I was faced the other way so it was not until the Chief Doc waved her hand in my face that I knew they were there. She asked what I was listening to and when I told her she told me she really likes The Stones. She said that if nothing happens in the next few days that "we will have make some decisions". Hmmmmmm....so we will need to decide if I will go or stay on until the transplant. Both are potentially unpleasant.

Had a very nice visit with my Brubbie and Terre. Sorry to report that Andy had to work but he is planning to come tomorrow. I will be in dialysis and also have an ultrasound that was scheduled several weeks ago. So I may be out of my room a large part of the day.

I am ignoring the Grammies right now and writing this post on the blog. I will return soon.

Bob/Irv

Fun Sunday

I started the day by fiddling with the computer. I got bold and started monkeying around until I was listening to music on iTunes while checking out my mail, Facebook, and the

And so on, and so on.......

Yet another day without news, but I hate to leave this space blank for any length of time! Robert J is still waiting very patiently for something wonderful to happen
(like a transplant, for example). He has rediscovered the joys of reading novels, after years of focusing almost entirely on automotive magazines. He burned through 2 books already this week (thanks, D and C), and requested that I show up with more today, so I made a stop at the library on my way over.
I am visiting on non-dialysis days, and trying to stay focused on my job on my days at home. We talk several times each day on the phone. Can't imagine how this would be working without our cell phones, facebook and email!
Looking forward to a visit tomorrow by Gary and Terre, and perhaps Andy too.
That's about it, as the waiting game continues for a calm and currently stable Robert J.

Another Quiet One

Pretty much nothing going on today. The Doc Entourage was only 2 of them today (probably doesn't qualify as an Entourage in this case). The visit lasted about 30 seconds of which 25 were spent by Dr. DeMarco looking at the pictures Leslie put on the bulletin board.

I was delighted to have a visit from Cheryl today.

This afternoon's heart and lung transplant support group meeting was canceled but at least we did not waste a trip to The City like did a few months ago. We came on the wrong day that time. Our social worker came by tell us she is retiring next month.

That pretty much covers it for today.

No Nooz....

Considering how much drama was going on a week ago, the lack of drama this week is mind-boggling. This morning I was updated on RJ's main issues: the strings in 2 different pairs of pajama pants were knotted, and he spilled sugar-free syrup on his pj top during breakfast. Talk about headline news!

Late this afternoon I finally made it into the City, and then Leslie and Chris joined us for a visit, as we gathered around the old laptop, looking at wacky websites and facebook postings......just like in the pioneer days! Those of us free to leave headed home after 7, leaving RJ to resume his reading. I hate leaving him there alone, but maybe it's just for another week, unless the transplant happens. Then the drama level is sure to pick up and there will be all kinds of new things to deal with. For now, just figure no nooz is no news from us!

Some Nooz

I was scheduled for dialysis this morning at 8:30. It is now almost 1:00 and I am still in my room. I keep forgetting I am on Hospital Standard Time which does whatever it wants. Wait a minute......the guy with the wheel chair is here now. I will be back in a while.............

(Five hours pass)


OK I am back and finished my very nice chicken taco salad. Anyway, this morning I was visited by the Doc Entourage. I asked today's Chief Doc what was the plan if I did not get the transplant by Feb. 3. She said I would be put back to 1B and sent home. This of course surprises me since I have been told I was here for the duration. I am not trippin' as this decision could switch a hundred times. Nothing on the schedule for tomorrow but that could change in a New York Minute.

All for now........

Bob/Irv

Not Much

Very quiet day here today. I slept pretty late. Doctors visited but it was just social. Had a nice visit from Carol and Dan then Cheryl arrived. Really not much to report so catch you later.


Bob/Irv

A mellow Saturday

Although Bob/Irv has our laptop in his possession, he chose to sleep late in his quiet new room, then enjoyed his novel all morning instead of blogging. Can't blame him a bit! So I'm updating from home, where I am enjoying my own "day off" from the craziness of the past 2(?) weeks. He is having dialysis all afternoon. The docs want him on it 4 times a week now, since he seems to have the most heart problems occuring after the weekend off dialysis. Other than interfering with his social life, it certainly makes sense. The dialysis unit in the hospital is on a separate floor from his room, and no visitors or cell phones are allowed (although I told him to see what happens if he brings his phone - will they throw him out?). He's looking forward to his brother's visit later this afternoon, and that's all the excitement that we expect today.
I am doing my best to get lots of things done around the house, and to be as prepared as possible for when we get The Call. After being ready intermittently for the more than 17 months since he got on the List, now I really have to have everything possible in order, like bills paid, clients up to date, cat food stocked, my suitcase packed with this season's extra clothes, gas tank full, phone chargers in hand etc. Of course it's the etc. I worry about - what am I forgetting? That's where I may be calling on friends and relatives to help fill in if necessary - thanks everyone for the support, moral and otherwise!
Keeping fingers crossed in the meantime............

On the move....

Friday evening, and Bob/Irv is happy to have left ICU for a wonderful single room with a decent view of the bay. He's also very happy to have finally eaten after starving since last night in preparation for a fourth try at having that stress test. He was finally taken for the test around 3. It was quite an outing: he was bundled into a wheelchair, hooked up to a portable heart monitor and oxygen and IV line, then propelled by his nurse (with an aide handling the IV stand and oxygen tank) to the elevator, where we waited in a traffic jam with patients riding in beds to get to the third floor nuclear medicine lab. I settled into the nearby waiting room, only to see the whole entourage wheel back into the hallway 5 minutes later. Turns out that after dialysis this morning and no meals all day, his blood pressure was too low for the test to be done safely. Arrggghhh.

Anyway, he got to ride back to the 10th floor to his new address, 1073 Long, where his slippers and robe awaited him, along with the best graham crackers and apple juice he's ever had!

Today's opinion on how long he will be in the hospital is this: his 1A status is just for a 2-week period at this point, based on approval from UNOS, and he will remain in the hospital for this. If the transplant doesn't happen in that time period, the team will re-evaluate and maybe request an extension of this status. It will also depend on his condition......if he does have chest pains again, he's in the right place. So far it's only happened at home, but we don't plan to be in a position of driving in from Livermore any more. But that's another post for another time!

Friday Jan. 22 update

Robert J is just finishing dialysis, according to his phone call just now. The stress test is scheduled for this afternoon sometime, and he was told the results would be available today.
Yesterday he was told he'd get moved out of ICU to a regular room on the 10th floor, but then his blood pressures started dropping and that idea was nixed. Docs are tinkering with his meds ( speaking very technically) to get the combination of drugs just right to keep his blood pressure in a safe zone. I will head back to SF shortly to be around for that stress test.....will update you all later.

Hold Your Horses, Pardner

I guess I shoulda waited until I got the word from the Chief Doc before announcing my new residence. Today she informed me the stress test is tomorrow and pending those results they all will decide whether I go home again before transplant. Doctors! Sheesh!! No events at all today so I am updating my own blog while Cheryl is on her iPhone selling cruises here in the ICU.

Thanks for all the calls, emails and Facebook posts from everyone. Watch this space.

Bob/Irv

Jan. 21 - UCSF

After all the years of thinking Robert J was close to getting a transplant, we think he is finally, officially, close. The 1A status goes hand in hand with him remaining in the hospital until a transplant happens. He was told last evening that the stress test and cardiac cath procedures have been cancelled, since at this stage they don't think there are any results that could be acted on. He's been told before that he would be living in the hospital until transplant, and then has improved and the decision reversed. We don't see that happening this time around, hard as it is to believe. Of course we have to take it as a positive, because it means he truly is as close as he's ever been to receiving new organs and getting a new start at life. Pretty mind-boggling.

I delivered his phone charger to him last night, so feel free to call his cell phone. Seems he will have plenty of time on his hands. As far as we know, he will have to remain in Intensive Care, but he can have visitors for short periods of time.....short because he is not in a single room (yet?). I took a short-cut home last night and enjoyed a cozy stay with Leslie, Chris and the grandkitties. Only about 12 miles from the hospital, it was a very nice change of pace for me. Will spend much of the day with Robert J and together try to figure out the impact of what's going on. After all the time of wondering, can't believe we are at this momentous stage of our lives.

Late-breaking news: He's now status 1A!

Bob just called with this news....not sure for how long or why exactly, but will take it and hope for the best. I am going to see him this evening and bring him his phone charger so he can talk when he wants!

He never got the stress test or cardiac cath today, so he demanded some lunch around 3 pm and got it....then dinner at 5:30. Will start off tomorrow NPO again since they are certain to want to try again for those procedures.

Jan. 20th, continued

Robert J is reporting that dialysis is scheduled any minute now, then he will be having another cardiac cath to see if there are any new blockages since the last cath. If there are, repair options will be considered. The docs also want him to have the much-delayed chemical stress test after all.....not sure in what order this will happen after dialysis. He says no reason for visitors today since he will be out of his room most of the day. I may go in later, if the weather clears. ( I was lucky to dodge most of the storms yesterday in my 2 round-trips, so don't feel like tempting fate today). I will try and get some sleep between noon and two then decide my plan.

Home and back to the hospital

Things have taken quite a turn in the past 24 hours. I was able to bring Bob home Tuesday afternoon, since he felt ok after that mild heart attack. But by time we'd made a couple of stops and had dinner, he started having the familiar chest pains off and on. We began re-gathering everything to take with us, while hoping the pains would stop, but by 9:30 pm it was time to head back to UCSF. Arrived just before 11 pm, and he was triaged faster than ever, since several of the same nurses from Sunday night recognized us.

This time the pain got worse when we arrived, and at one point there were a dozen people in the room with us. All he felt was the chest pain, but according to the monitors his heart was way out of rhythm and blood pressure real low. They consulted with the heart failure and cardiac docs and got the right meds going, and by about 1 am he was stable again. Of course he was admitted again and is in ICU on the 10th floor, waiting today to see what's in store for him.

There was a major development before we left the hospital that has us very hopeful and may be even closer now: the transplant surgeon came by and told us that recent problems put Bob at the top of the list of status 1B patients. He said there was no reason to move him to 1A ( highest priority) because there are currently no 1A patients in the region. Of course that can change, but essentially right now Bob is at the top of the list as far as his surgeon and transplant team are concerned. We were excited and scared but assuming we would wait for the big phone call from home. Last night's events changed things, I suspect.

When I spoke to Bob this morning he was expecting a visit from the docs of course, and he is again without food while they decide if there are any procedures to be done besides dialysis. I will update when possible.

Current plan: home today!

Bob called with the news that the cardiac transplant "entourage" plan to send him home today. They just stopped the heparin IV and want to wait a couple of hours for the blood thinner to leave his system before turning him loose. So I'm heading to SF shortly to being him home if all goes smoothly ( that could happen). We'll update of course with any changes!

Defining "normal".....

Well, it seems like normal for Bob is being in the hospital, because that's where he is again. After enjoying a night at home and delightful day in Sacramento Sunday with Andy, Linsey and her family, instead of heading to bed Sunday night we made the trip to UCSF around 11 pm.....very slight but definite chest pain started up around 9:30 pm, and would not go away. It was a quick trip to the ER, and in record time from arrival at midnight, he was checked over, IV-equipped, EKG'd, Xray'd, lab-tested and admitted to a room on the 10th floor by 4 am. I headed right home both for sleep and to dodge the approaching rainstorm and wind.

He had dialysis mid-day and is getting his first meal of the day about now ( 4 pm) since he was kept off food in case someone wanted to do some kind of procedure on him. NPO is getting to be another kind of normal for the poor guy. No procedures were done. He is pretty well rested now and has his cell phone. Unfortunately I left his newest book in the car and he is bored, but even he agreed I should not drive back in the storm to bring him a book - I'll let the hospital volunteers help him out.

Due to the MLK holiday the transplant clinic folks are off today, so I will not even speculate ( I'm learning) about what's next. He's stable now and comfortable. Will keep you all posted.

Home

After a bout of low blood pressure late Friday I was instructed to stay another night at John Muir. Couldn' t disagree as I was unable to sit or stand up. But Cheryl was able to get us both home just a few moments ago.
So once again it is back to normal.

Wrong again!

Well, we're still glad it's Friday and the end of a tough week, but after dialysis, then lunch and his regular blood pressure meds, Bob's blood pressure took a dive, and he became dizzy even sitting. Standing was not possible till late in the afternoon. By then his doc decided that caution was in order, and requested that Bob stay one more night in the hospital. We did not argue the point: Bob's fall in 2008 that resulted in a broken leg is still fresh in our minds, so keeping him safe and sound is the right thing to do. By evening his numbers were improving- some IV fluids helped, as well as dinner. By breakfast on Saturday morning he should be good to go, especially since they decided to back off his blood pressures in the morning. He decided to watch an old movie on tv and I returned home without him. We'll give it another try tomorrow!

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