Mellow Sunday at last

We really enjoyed Gary and Terre's extended visit this weekend. They ran a lot of errands for us and then hung out with Bob all afternoon watching today's nascar race. I took off and got a closer look at the nice weather and our blooming yard for the first time in a couple of weeks. That was fun for me, and I know my dear husband had to be glad for a break from my constant reminders and suggestions about what I think is best for him!

We are hoping for some solution/ resolution to all the fluid drainage Bob continues to experience. He said he's constantly hearing the song "Up on Cripple Creek" in his mind, so of course I am too. Good thing we both like The Band a lot! We will be calling the transplant coordinator Monday morning after lab work is done to see if the team has a plan after viewing Friday's ultrasounds.

ED

No, ED is not the talking horse who conversed with Wilbur many years ago (OK I know that was Mr. Ed but play along with me on this.) It is the Emergency Department at UCSF. And once again it was our home away from home away from home for most of today.

The rules say you gotta call the transplant folks if you gain more than 2 pounds in one day. I gained 4 today, so I called the weekend number. A while later the doc called and we discussed the situation. That doc then called another doc then called me. It was suggested that I drop on into the ED for some lab work. I went back to a room where we waited for 2 hours to be seen by anyone. Then came a flurry of activity followed by more sitting around. It was decided to do the blood draw, EKG and chest X-ray. After all this there was a wait for lab results and a consultation with the transplant docs.

Bottom line; there are couple of minor medication changes and after the usual wait for discharge orders it is time to go. This is at 5:30 pm. Gary and Terre had been cooling their heels with Cheryl all day so I felt bad for them blowing their Saturday for this. We had a nice dinner back at our apt. and now I am closing off another day creating this blog.

Bob/Irv

TGIF!

We have now survived an entire week on our own ( sort of) since Bob was released from the hospital. We are hoping for an entire 2 days free of any kind of clinic or ER visit this weekend. We went in for this morning's lab work, then the home nurse visited mid-day to change dressings and generally check him over. We were excited at the prospect of the rest of the afternoon and evening to ourselves.........me to spend some time working, and Bob to read and rest. We did get about 2 hours, then got a call to come in for an ultrasound to check out the continual leaking from his kidney incision. Luckily we got in and out pretty quickly and now are in the process of feeling like we have a weekend.

The follow-up call after the ultrasound was that no specific action will be taken at this point - nothing alarming was found. We just have to keep things as dry as possible and watch for any signs of infection, which of course we are doing constantly anyway. Some blood pressure meds have been decreased, since Bob is having light-headedness way too often when he gets up from lying or sitting.....just like before the transplant, so that's not fun.
He's had some trouble swallowing and some pain in his throat and chest which has been diagnosed as a form of Thrush - something very common in immune-suppressed people. The new prescription for that seems to be doing the job.

But these little ups and downs are part of the process and now that I've caught up on my sleep I think we will cope better and better! He will also be more comfortable once that foley catheter is removed, which is scheduled for next Tuesday. The most important thing is that his rejection percentage is Zero again this week. And we are quite aware that in the big picture, life is going quite well!

Hospital Standard Time Strikes Again

Made the 8:00 am kidney clinic and they called me in pretty quickly. I was surprised since the waiting area was packed already. We told the doc we were scheduled at 9:00 in the heart and lung clinic. He was very concerned and we got out of there and up to heart/lung by 9:00.

During our wait we talked to a lot of heart transplant patients who come on Thursdays. One nice couple are from Manteca; he had his transplant last Thanksgiving which of course reminded us of that epoc day when Grandpa got his liver on Thanksgiving.

Well the time crawled on by before our eyes. We called our next appointment (infusion center) and asked their indulgence. They were not trippin'. The heart doc and substitute post-transplant coordinator rolled into the exam room about 11:00 am. There was a lot to talk about so we got up to the infusion center about 12:30. They were cool about it and I went on the IV about 1:00. Of course we had not eaten yet so I started to get that famous forced fasting sensation. Cheryl came through with a dash across the street to our favorite pannini place and I had enough time to wolf it down before the treatment.

Meanwhile events outside were going into the toidey. Cheryl was going back to 2000 Post to eat and do some work. I would be on the IV for 3-4 hours. She went to the valet to retrieve the Fit. It was a disaster at the curb with the parking guys telling people they were full. The cars were stacked 3 deep in the street. Then the guys were unable to locate the car. Finally it was found and Cheryl was off and running.

She took a call from the coordinator. They were adding a new med but were having it trouble getting insurance coverage. Cheryl pointed out that we had a supply at home from my previous stash. So she called Robin at work. She gave her a "shopping list" and they set up for a "drug deal" in Dublin. The drop went down smoothly and the pills were spirited on to SF. Thank you again Robin and Robin's very gracious boss.

A big concern is that all this time since we moved in here I have been constantly draining a clear liquid from my kidney incision and the puncture from last week's biopsy. Despite all sorts of pads, tape, gauze and bandages it is not stopping. There are a couple fixes but the word "surgery" was mentioned. Not good.

OK enough already. We are hoping tomorrow is mellow (labs only) and we can get some stuff done.

Bob/Irv

Fear and Loathing in the Cath Lab

We were hoping our 7:00 am arrival would give us an early biopsy and then gone. Could not have been farther from how it all went. Suffice it to say I was once again enduring a long and very hungry day. Our 7:00 am dreams became 3.00pm reality. Luckily the doc was happy enough to use my neck for access rather than go in the leg which would have required 4 hours flat in bed. We finally arrived home at 4:30 pm. I got quite a nice reception from the staff, many of whom I have been seeing for over 5 years. Cherie broiled a steak and baked a potato, which is not on a dialysis diet. That was a treat.

Tomorrow is another grueling day starting at 8:00 am with kidney clinic then heart clinic. We finish with 4 hours of infusion therapy to address the difference in Cytogram between my donor and me. This is another rejection related treatment.

At least there will be no fasting required. Am I overly trippin' about the food thing? Hey, I'm a Moss!

Bob/Irv

Ditto Yesterday

Pretty same-old today. Visit from the home health nurse with no new developments. I am still "leaking" but no worse than before. Cheryl managed to get out to Whole Paycheck and pick up a few provisions.

Tomorrow I go to Parnassus for another biopsy. If they go in through my neck it will be pretty quick. If they use the groin there will be a 3-4 hour bedrest lying completely flat. And it is fasting starting at midnight so I am hoping for the "quickie".

Bob/Irv

Status Quo......

We really have nothing to report today, but I know this is where so many friends get their updates, so we won't leave you completely hanging. Today was calm and non-eventful. Another home nurse visit, calls from the transplant coordinator making slight adjustments in the meds based on this morning's lab work, a trip to the pharmacy to pick up some new supplies, and a failed attempt to get to Trader Joe's (the line of cars waiting to get into the parking lot were a real put-off to me). So we dined on perfectly tasty left-overs tonight, and I'll venture out earlier tomorrow with other stores in mind. A big accomplishment was getting some paperwork finished (I think) and faxed off to the insurance company. We are both looking forward to having more energy soon, and know it will happen in good time. All in all, this report is a real yawner but hopefully better than nuttin' as RJ would say!

Half a lazy Sunday

Our weekend has sped past, packed with ups and downs. Enjoyed all the visits on Saturday - everyone who came had to pitch in with some kind of help (except for my cousins who just popped in and out with a great heart-shaped balloon - perfect)!
The day went so fast, but ended with us enjoying dinner together and finally getting a great night's sleep.

This morning was great, I even cooked breakfast instead of just pouring cereal in a bowl. But when the home health nurse came by, he decided along with the transplant team that Bob should be seen, to have some excess fluid (escaping through stitches) checked out. We grabbed a quick snack in lieu of lunch, and headed to the hospital to be met by one of the transplant cardiologists. Risk of infection is so extreme at this point that the ER is really not a good place for him to be, so they got him in an enclosed room immediately. He got checked out by the cardiologist, ER doc, and kidney transplant surgeon. Fluid and blood samples were tested, vital signs taken and an ultrasound of the kidney was done to make sure no hidden pockets of additional fluid were lurking. By about 8 pm it was decided the excess fluid was harmless, and the body was just doing it's job getting rid of it any way possible.

It was a scramble then to get the discharge papers, new bandages and supplies to deal with the fluids, and race home for the vital 9 pm meds.....the immunosupressants have to be taken every 12 hours, and no one wanted to start the process of ordering everything from the hospital pharmacy. That would have taken hours more. So we arrived home by 9:15. He was very weak after being on a bed for 6 hours so it was a challenge getting him upstairs and inside, but he went right to the dining room table and downed those pills!

So happy to be back home together. Now time for laundry since there was never a spare minute all weekend. Maybe Monday will be calmer?? We still dare to hope!

Embarking on the Next Phase

I thought I would throw out a few random thoughts concerning my new life after transplant. There will be changes that will be noticeable to everyone.

Please do not visit me if you are sick. I am heavily immunosuppressed on medicines that prevent my body rejecting my new organs. Therefore my immune system is unable to defend me against all illnesses and infections. I may have to avoid shaking your hand, kissing you or hugging you. This does not mean I do not love you. I will ask you to sanitize your hands around me using the gel that we will have around.

I will be able to go out but I should avoid crowds for a while. Sushi (uncooked) is out and alcohol is still discouraged. I am still fairly weak from the surgeries and long hospital stays but all of the heart and kidney functions are doing well. I can do some travelling as long as the team is satisfied I am near a transplant center. Foreign travel may be off in the future a bit.

Today I will be seeing a home health nurse as well as Andy, Gary , Robin and Pat. My routines are very new and different and seem to take hours to complete. But things are better daily. Next week should be challenging with labs, biopsy, and clinic visits. It's all good.

Day 1, surviving the outside world

We have managed survive outside of the hospital for nearly 24 hours now. Meds have been taken on time, meals consumed with little effort (thanks again to our angels who brought it all in), a shower for RJ and a successful outing back to the lab at UCSF before breakfast for the first of many Monday-Wed-Friday appointments. He did great, but did need a nap afterwards.

Glad it's Friday - no clinic visits get scheduled over the weekend. By Monday we should be more accomplished at all the morning routines. Next few weeks are packed with appointments here,most in early morning- therefore the need to stay close. Wednesdays and Thursdays are especially busy: weekly heart biopsies and IV infusions of anti-bacterial drugs, plus visits to both the kidney and heart transplant clinics.

Maybe it's a good thing we were not provided with a detailed itinerary before the surgery - it's pretty mind-boggling! But as Irving continues to get stronger and able to be more active, we will surely find some moments of free time to resume normal life - he did turn on the tv last night, so a few minutes of watching the news made us feel like regular folks for a bit!

We will provide info on how and when visitors can come by, later!

From Roller Coaster to Rocket Launch

With the invaluable help of Robin and Sandy, we have successfully made the transition from hospital to home! Robert J has managed to take his first round of meds, his first insulin shots (is off his familiar pump for a while) and deal with his foley catheter that came home with him. Now we have a few minutes to sit still before handling the much bigger 9 pm round of meds. Robin and Sandy are having a very late dinner after their grocery store run for us - that's after they unloaded the car and unpacked everything and set up our household. They will sleep well tonight once they get home! We too hope for a great night's sleep before heading out early tomorrow morning (after another load of drugs) for lab work, which will be repeated Mondays, Wednesdays and Fridays. We are so grateful for all the help we've had, both for the move and from those staying in our house to keep Lucy fed and watered and the mail handled and the yard and, and, and.
More coherent update will be possible tomorrow.

By the way.....

In all the fuss, we forgot to mention: biopsy #1 showed ZERO rejection! So the rest of the ups and downs have to be taken in perspective. The main purpose of this huge project has been accomplished. Feel free to remind us of that when the whining gets too annoying!

Get Outta Here

Today's big surprise was the off-hand news from the surgery physician's assistant was that I was going out of here this afternoon. Immediate freaking as we thought we had longer. We still needed to meet with the transplant coordinator. pharmacist, endocrinologist, nephrologist, and home health nurse. Cherie was stuck on the Bay Bridge when I talked to her on the phone. She redialed the apt manager from her Monday visit and booked a 1-bedroom unit for moving into tomorrow.

Long story short ( since the computer just ate about 45 minutes worth of blog), I am staying 1 more night, getting the rest of the discharge instructions from endocrinology, nephrology and home health and then we will be moving to our new digs on Post St. for 6 weeks.

More details will follow when I have the time and patience for messing with the computer.

Day 8: Back on the positive side of life!

Ok, we have a fresh start and good outlook today from both home and hospital! I spoke with Irving at 6:30 this morning with the help of his night nurse, and he's well rested and content. And that makes two of us. He has been up since about 6 am, reading. Still has some pain in his shoulder from the pacemaker removal surgery but is in good spirits and now understands why I was not around last night. He will make sure his room phone is within reach so he can take brief calls from friends today.

I will be getting a long-overdue haircut this morning and then go right to the hospital for our 11 am meeting with the transplant coordinator and pharmacist, as we get the in-depth training on how to keep him safe after he leaves the hospital. That will also help us decide where the best place is for us to stay for that initial 6 weeks....I have some good options including the offer from our wonderful Berkeley kids!

Will this day ever be over?

My cheery morning post seems like weeks ago now. As Leslie said, I finally realized that it would be hours before I got to see a likely zoned-out RJ, so I headed home around 4:30 after letting the surgery reception desk and the 10th floor nurse's station know my plans - and cell phone number. Of course at that time of day my 50-mile trip took 2 hours, but I still got home before it was completely dark. Something unusual this past month. I had barely started searching the freezer for dinner ideas when my cell phone rang. It was the recovery room nurse with my worried husband on the line for me!

He was still very groggy, but wanted to know "what happened?" - regarding me being at home and not at his side. I explained that it was 7 pm now and I needed to get some rest too. He was very disappointed, but not really aware that I had last seen him around 1 pm. (Learned later that the procedure to remove the neck catheter for dialysis also took longer than I was told - an hour plus, instead of 15 minutes, so it's just as well I left for lunch and an apartment tour during that procedure). He told me the surgery to remove his old pacemaker took way longer than anyone expected, and that he was currently in a lot of pain, and of course very hungry. I then got to speak with the nurse again and asked about pain meds for him, explaining that this was a guy who never complained about pain, so it would be great if the docs allowed him something. She said that was in the works, and that he'd be returning to his room on the 10th floor when he was sufficiently concious.

Without going into even more boring details, after several calls to the 10th floor nurse's station I only know they are expecting him back there any time, but he had not yet arrived by 9 pm. Soooo glad I am ready for bed at home instead of having that long drive ahead of me at this point. He will be taken care of and we will catch up tomorrow. This very long day had to be hard on him and I expect it will take a day or two to regain his energy.

Looking forward to a fresh start for both of us Wednesday!

A Long Day of Procedures

Mom has requested that I communicate the afternoon update, as she is exhausted! I spoke with her at about 5pm and Dad was still in surgery for the removal of the dialysis port and pacemaker. She decided to bail for the day, as he wasn't done yet and would be in recovery for a couple of hours after that. We had hoped that all the procedures would be done early enough to still meet with the transplant coordinator and pharmacist about all the new medications. It got late so that has been moved to tomorrow. Mom also went to see an apartment during the day that she didn't sound too stoked about. I am still hoping they'll just stay at my house while we're gone. They've gotten the ok from the docs to be across the Bay Bridge, they'd feel at home there and best of all it would be free!
So that is the overview, Mom may chime in later to correct/add details...

Day 7!

It's a bright sunny morning in San Francisco, and my "sleep-over" was the right thing to do. I was able to go right down to the cath lab with him at 8:15, rather than be stuck in bridge traffic! I was also given his breakfast to eat, so got a taste of the infamous french toast (nice, but not something I have to have again). His nurse did a great job of getting all his meds distributed early so he didn't miss anything before the procedure. And he is learning his part of charting everything as he takes his drugs, something we will be doing from now on, twice a day forever!

He was back in the room by 10 am, and is currently dozing while recovering from the biopsy. Dr. H came by and wants him down in the OR as soon as possible for the other 2 procedures, so hopefully we can be back in the room by 1 pm for our training session on post-transplant protocol with the transplant coordinator and pharmacist. Somewhere in between all these events I am supposed to meet with the landlady of a nearby apt that sounds very nice for our 6-week SF stay after his release from the hospital. Our phone reception is still very sketchy but I know there are some messages for him - I'll try and share them with him when we are in an area where his phone will work for more than a second. Busy day, but all good things and all moving in the right direction!

Hi Everyone

Please allow me at long last to update my blog. It is nearly dinner time here and I just got back from a rousing walk around the 10th floor. Cheryl is here and will be staying over in the room tonight. Leslie is here too for a visit before she and Chris will be heading for Spain.

Tomorrow I will be having my old pacemaker removed, as well as my dialysis access. Then I will have my first
heart biopsy to determine if any rejection has occured. It will be a long and hungry day.

I am amazed and thankful for what I have been given. I am likewise grateful for all the cards, emails, posts and general interest and support of this journey. I am fortunate to have the very best family and group of friends imaginable. And as Cheryl says "we are a team" and it is not conceivable to have done this without her; I would be toast .

So off we go on a new part of this adventure.

Bob/Irv

Change of schedule

Quick note: no procedure to remove the pacemaker today after all.....RJ was not supposed to have breakfast this morning, so now the deal is off. There is a very unhappy Dr. H, and probably several really unhappy staff members who apparently dropped this ball!

Day 6: Grumpy Monday Morning

Seems that I am not alone in disliking Bob's tiny room on the gloomy side of the hospital. I honestly did not make a big deal in front of him when we arrived last evening, but when we were finally able to speak on the phone this morning he was virtually ranting: "I hate hate hate this room!". Turns out the biggest drawback is that it has the worst cell phone reception on the floor, and that is a huge deal to Mr. Social. He managed to get a call through to me, then it immediately dropped. I called back on his room phone, then that call dropped too. It took a call to the nurse's station from me, to get the room phone plugged in correctly and then we were finally able to talk this morning. (Oh - he also got a generic breakfast this morning, so that was another strike against his new accommodations!)

ANYway, as far as the heart-kidney transplant situation, he's moving along fine. He continues to have a lot of fluid retention, but docs say that's expected and they are dealing with it. At some point today he will have a minor surgical procedure to remove his old, no-longer-needed pacemaker - it was left in his chest after the transplant, apparently standard practice. So any potential visitors will need to check with the 10 Long nurse's station first, to find out where he is.

I am working from home this morning, then hope to visit a couple of hotels and apartments in preparation for our 6-week SF stay, required after he leaves the hospital. I am daring to spend the night with him tonight (have always wondered how comfortable those little fold-out recliners really are), so I don't have to fight the Tuesday morning commute to be with him for the early morning biopsy, first one on his new heart. I will hope to report a less-grumpy status for our hero later today.

Big finish to Day 5

This quiet day really picked up just as JP and Cora arrived for their quick visit: the nurse announced a room was ready for Bob on the other side of the 10 floor, and the wheelchair and escort arrived as I was busily packing up his belongings (and mine!). JP even had to push the cart with all the extra stuff - we were glad to have the help. By about 5:30 Bob was settled into his new room and JP and Cora dashed off to their dinner date.

So, he's out of ICU, and in a single room, which is super progress. The room itself is not the best he's ever been in (not to be petty, but just painting a picture here). It's on the back side of the building (North?) over-looking all the sheetmetal roof vents and equipment below, and right next to the transport elevator. It also has the distinction of being the smallest room on the floor! But it has all the necessities and privacy that he needs, and will be an additional motivation for him to continue his speedy recovery and get the heck out of the hospital.

It was nice to see how many nurses came by to congratulate on his triumphant return to the floor, with his new and improved organs. He is now the local celebrity.

Day 5: Enjoying the Daytona 500!

As you can see by the photo, Irving is very focused on watching the wall-mounted tv. Even with all the delays in today's race, he is very happy to be able to watch it. It's even a plus to still be in the ICU, since the tv screen there is considerably larger than in the regular rooms.

His surgeon came by earlier and is ready to transfer him out of ICU, as soon as there is an empty room. Unless that happens today, it's the calmest and quietest day since he arrived. We will take a couple of walks later, and he's expecting a visit by JP and Cora in the early evening.

Day 4 - status quo

I got to the hospital later than planned today - seems the entire East Bay area was heading into SF for the first decent weekend weather day, and/or to celebrate Valentine's Day early. But Bob was enjoying a visit from Gary, Terre and Will so was happily occupied. They reported witnessing his afternoon walk, impressed with his quick pace. And I stuck around until I got to walk with him too, finally. A nurse even took a picture of us, to prove that he really is walking now. I'm very disappointed that our iffy technology is preventing me from posting that photo. I will go back to using my trusty and simple iphone again.

During our walk, my phone calendar reminded me of tonight's Elton John - Billy Joel concert that we had planned to attend. The reason we are missing this one is so wonderful that we are not even disappointed - we are much more hopeful than we were a week ago that we will be in a position to attend many more concerts in the future. And we trust our "stand-ins" to provide a full report on the event at some point!

Discussion continues about moving him out of ICU over to the regular section of the 10th floor, but the docs seem in no hurry, and of course there are no empty beds there either. (Long time readers of this blog have heard that story before). And Bob is in no hurry this time - still has a couple of drain tubes and an IV pole, so is not exactly able to move around without help yet.

We had a visit from Robin and Pat before dinner - they were thrilled to get a look at him for the first time, after seeing him off to surgery on Tuesday afternoon.

I will aim for a much earlier arrival on Sunday, so we can watch as much as possible of the Daytona 500 together. As several of you have mentioned, yes, he is very worried that he will get moved or be "bothered" by docs during the race. Imagine that! Gotta love the fact that his racing passion is back in action after a few years of apathy. And that's it for today.

Post-transplant Day 4

It was nice to have a return to our pre-transplant routine: I was awakened at home this morning by a call from my husband, on his cell phone from the hospital! He is still in the ICU, but hears that he may be moving out today! Of course it will be nicer to return to the pre-hospital routine, but that will be a bit longer.....he has been in a hospital every night now since Jan. 11, except for 1 night Jan. 18. Wow.

He is feeling less pain and even took a third walk yesterday evening after I left. Guess I have to camp out in his room round the clock to get in on the walking. He started a new book last night, and once he's in a regular room I'll leave the laptop for him so he can do his own communicating once again.

Now we have to settle down after all the initial excitement and celebration, and focus on our new life and new habits to be learned: Tuesday morning he will have the first biopsy of the new heart, which is how they know if his body is thinking of rejecting that new organ. Tuesday afternoon will be time for "school": we will meet with the transplant coordinator to go over all the things we need to do differently, to avoid exposing Bob to infections and illnesses now that his immune system is being suppressed (again, so it doesn't automatically reject the new heart and kidney). Then we get to meet with the pharmacist to go over all his very essential new drugs, and when and how they need to be taken.

The other thing we've known about but now need to figure out, is once he leaves the hospital ( in a week or two), we need to live within a few miles of the hospital for the very frequent biopsies and tests that will take place the first 6 weeks he's out. I've had a list of apartments and residential hotels for years, actually, that the social worker provided. But it's no longer hypothetical - time to start apartment-hunting this weekend! Should be interesting.

Time to do my (hopefully) speedy home chores before heading back to SF....a few visitors are already scheduled for today, so let me know if anyone else is thinking of dropping in and we'll make a plan!

Day 3 PM

Report from daughter's point of view. I am here at the ICU with Mom and Dad. I arrived while Dad was enjoying his dinner that included many of the things that have been forbidden for so long! (I am realizing as I type that many of the new exciting things he is enjoying revolve around food - What can I say, we're Mosses). I have been most looking forward to him being able to chug a soda, which he has been doing - he says there doesn't seem to be any limit to the amount he's allowed to have.
He's been out for 4 walks so far and Mom has missed them all. =( He has also had many tubes removed, he is now only hooked up to oxygen, IV and a couple of drainage tubes. He is doing so well that he may move to a regular room this weekend. He still hasn't cracked a book but has enjoyed the newspaper and TV. He's getting that far away look in his eyes that all men get when they are watching sports on TV and not hearing what their wives or daughters are saying!
That about wraps it up. Things are going well and we'll keep you updated!

Day 3 - morning check-in

Just got off the phone with our hero. He's in his chair already, but was preoccupied with the fact that his french toast is missing from his breakfast tray - Oh No! That's still his favorite menu item, so the day is off to a disappointing start. If this is his biggest problem today, we have nothing at all to worry about! And he does get real milk (instead of rice milk) on his cereal, now that he has a working kidney, so all is not lost. I am heading to the hospital soon so I can walk with him when it's time. Will report back later with whatever today brings.

A Stellar Day 2

Irving (for those who knew him from college days) continues to be on track with his post-transplant recovery. By time I got in to see him, he had eaten a real, non-liquid lunch (including previously forbidden melon when in kidney failure), and taken a walk the entire length of the 2-winged ICU department. He was back in his chair when I arrived, complaining of being tired. "I have a new heart so I shouldn't be tired". I explained the rest of his body has taken quite a beating with surgery and tons of drugs, not to mention he has done very little walking in recent days. We were told that Day 2 is considered one of the most difficult, since the pain and activity levels are higher, and the pain meds are being decreased. Everyone promised Day 3 (Friday) would be much better.

Part of the recovery process involves him blowing in and out on a plastic device
(familiar to anyone who's had surgery). This is taking place every 4 hours, round the clock, so he is not feeling rested yet - who would?

He had fewer visitors today which worked out well - enough to keep him entertained but not wearing him out. A few close friends and family each day will make him very happy. Turns out I brought the wrong book today, but I don't think he had the energy to read yet!

Tomorrow I hear we get to start our training for his life as a transplant recipient: there is a binder of information about what we both need to know about all the new medication and how to keep his very suppressed immune system safe from infections. I think tomorrow we will be able to handle that.....would not have any sooner, and those experts at UCSF know that!

We are still in a state of amazed disbelief that this transplant has actually happened. I'm sure we will never take it for granted. Life was getting very difficult, and it will take us a while to realize all the experiences that will once again be available to us. I think every day will be Thanksgiving from here on!

Awesome update!

I just spoke with Bob, and he told me he was out of the bed and sitting up in a chair! Can't believe it. He also enjoyed his favorite breakfast already: french toast. So he's zoomed through the clear and soft liquid phase of the post-op diet. He is definitely feeling a lot of pain, especially with the important deep breathing, but he's doing what he's supposed to. I was instructed to bring his slippers, hair brush and his book so I guess his arms are feeling less like noodles today if he's up to holding a book. I'm heading to the hospital now for a first-hand look at this miracle of a guy!

Continued improvement

I didn't realize the blog never got updated Wednesday afternoon........the 2-3 hours of sleep I got between Tuesday and Wednesday made me think even less clearly than usual. So here goes:
The breathing tube was pulled mid-afternoon Wednesday, and we were greated with a hoarse "Hi" from Bob when we returned to his room! Of course he was very thirsty, so Leslie had the honor of donning gloves ( for sanitation purposes) and feeding him bits of ice chips. He encouraged her by imitating a baby bird, opening his mouth as soon as he finished the previous piece of ice. He thinks UCSF has the best ice in the world!

His pain meds have been slowly decreased, and of course with that, he's feeling more pain from this huge surgery. By last evening before I left, he was definitely hurting when he had to take deep breaths, but that's what he's being instructed to do. They are also decreasing the heart meds little by little, as the new heart continues to show it's strong and steady. So amazing to see the strong heartbeat just looking at his bare chest!

When I left last evening around 6:30, his dinner tray was waiting - clear liquids, of course, but the nurse told me in honor of his past career as a hospital food service director, the broth was the gourmet version, not the usual! Wonder what the difference was? I will ask today when I return.

Before I went to sleep last night ( ie passed out) I called his nurse to get an update. She was telling me all was as expected, then said he wanted to talk to me himself! Never expected to be having a phone conversation less than 24 hours after the transplant. His main message, besides that it hurt to take deep breaths, was that he loved having the family around him all day Wednesday, especially our wonderful kids, great son-in-law and future daughter-in-law. Talk about getting to know the inlaws......they really came through, braving the post-op views of Bob and all the scary ICU set-up. We agreed for the millionth time, we are so lucky!

Today will be much quieter for him, which is probably what's needed. I will be heading back to the hospital soon, and will get back into the caregiver mode now that the big cheerleading efforts can take a back seat. Not sure if I will drag my old laptop with me today, so there may not be an update until evening. Just assume no news is no news! Thanks as always for all the encouragement and support from near and far.

Sedation decreasing - awareness increasing!

As of this afternoon Bob is increasingly aware of his visitors and knows what's going on. He won't be able to speak until his breathing tube is removed later, but is clearly communicating with head nods for yes and no. I told him I was returning to the waiting room so someone else could come in, and he shook his head "no" very emphatically. I asked if he wanted me to stay longer, and I got a huge head shake "yes". I also asked if his knee still hurt from the fall on Sunday, so he wiggled leg around and nodded "no". Very satisfying to find him so able to communicate so soon. We are still amazed and blown away that this momentous surgery has taken place at last. And of course we are so aware that another family is grieving a terrible loss. We will be forever grateful that they made the decision to share their loved one's organs so that many other people would benefit - Bob is just one of several, we're sure.

I Wanna Be Sedated

Hello out there - Daughter Leslie signing on to contribute to RJ's blog:

Mom and I are up and awaiting the arrival of Andy and Linsey. We'll head back to UCSF soon. RJ is still being kept under sedation to keep him comfortable while the breathing tube is in place. His brother Gary has been at his side since shortly after we left this morning around 5:30am. He arrived at his bedside after a late night flight coming back from Florida.

Ok, now it is 30 min later, Andy and Linsey have arrived and left again with Mom back to the city. We'll follow soon!

A loooong night

The transplant was finally complete by about 3 am - we spoke with the heart transplant surgeon at 2:30 so learned his part of the job was done, and the kidney transplant was in the final stages. RJ is now in the ICU, with his new heart working correctly. The kidney was lagging a bit but we were told a few minutes ago it was starting to work. Waiting for a chance to get a glimpse of our hero. Then some of the all-night crowd will head home for some sleep, and I will await the Wednesday replacements. Still can't believe this has actually happened, and are expecting a great outcome, in spite of the ups and downs that are certain to come along with recovery.

It's GO TIME!!!

At about 11 this morning the transplant coordinator showed up in Robert J's room to tell him that organs were available for a transplant! So we all raced to UCSF, and Leslie and Chris, Robin and Pat and I were able to spend some time with him before they wheeled him to the OR around 1. The surgery will take 10 to 12 hours, so we don't expect any news until after midnight at the earliest. We are certain that after all he's been through on this long road, he will be absolutely great after he recovers from this huge surgery. Thanks in advance for all your positive thoughts and support!

Monday aches and pains

Yesterday's little fall did cause some pain by the afternoon......Bob's left knee apparently took some of the weight when he landed, and it got increasingly sore and bruised as the day progressed. His arm was also turning colors, although it didn't hurt at all. He decided to skip his usual walks around the 10th floor, and kept an ice pack on his knee instead. He was "yellow-tagged" by the staff also, which is the official label for a patient at risk for falling. He was not happy about being told he had to call for assistance any time he wanted to get up, but knows it's better than getting sent back to ICU, so he is playing along with the rules.

Today has been uneventful for him, other than being awakened at 6 am for early dialysis, and then having to wait until nearly 8 am to be taken to the dialysis floor. He did not get back to his room until 12:30, but since then has enjoyed lunch and is reading and taking it easy. I will head back there on Tuesday for my regular visit.

He's No Fun....He Fell Right Over! (as Firesign Would Say)

Had a very nice visit Saturday with Robin and Pat. Without warning the guy showed up with the wheelchair to whisk me off to dialysis. They were able to ride up with me in the freight elevator. Since there are no visitors allowed up there the door to the dialysis unit was as far as they could go. Thank you guys for coming all this way to visit.

After dinner I had another bunch show up; my Dinner Gang. For those not familiar with my dizzying social life this is a small group of friends who worked at California Pacific Medical Center together in the early 90's. We have been doing this for about 17 or 18 years (no one can remember exactly when) roughly once a month. Sometimes spouses/SO's are included but more often not. We had a nice long chat down the hall in the solarium with a great view of The City sparkling below.

Today started well with my favorite meal of the day, breakfast. I was standing at the sink when I started getting a flushed feeling in my head. The next thing I knew I was lying on the floor on my right side. After I realized what was going on I slowly sat up, then stood. Then the nursing assistant came in and I told him. Of course he went to find my nurse who subsequently called both of my docs. They checked me out, asked me some questions and the letters "ICU" were mumbled. I pleaded that I could stay over here, and so far it has not been pursued. I am basically OK except now my reputation is ruined and I am considered a "fall risk". Since I haven't pulled one of these in almost 2 years I am surprised and disappointed.

Right now I am listening to James Taylor on iTunes while composing this post. Cherie is very near the hospital and we will spend some quality time ignoring the Super Bowl. We do hope to catch a few commercials and the halftime show with The Who.

So it's all good (as Andy would say) and I hope to pass the rest of the day without incident.

Bob/Irv

Stable again

TGIF, I guess.....after last evening's excitement, Bob slept very well and has had a very comfortable day. Even got treated to dialysis in his room, instead of being wheeled to another floor where he is out of touch for several hours. We will try again for a quiet evening together in his room, and plan for a no-drama weekend - unless something major happens like a transplant, of course!

A little too much excitement

After getting the good news about Bob's being granted another 6 weeks of highest priority for new organs, we settled in for the afternoon and evening - I did some work on the laptop, he finished his latest book and we took a couple of laps around the 10th floor. He was just finished with dinner around 6:30 when he started feeling the dreaded but familiar chest pains. He called the nurse immediately and the staff rallied quickly. This was a scary one, since it got intense much faster than ever before. Thank goodness he was already where he needed to be. If we had been at home this would probably have been my first call to 911. Nurses, cardiologists and staff from the First Response team arrived, an EKG was done in the room, and morphine and heparin administered. It took about 45 minutes for his pain to subside, but things calmed down.

As we were starting to relax and be thankful that everything got taken care of so well, people started gathering in his room again. This time it was his heart monitor that had everyone alarmed, although he felt fine. They went as far as to prepare him to be shocked, if necessary, to get his heart back in rhythm, and a doc from the ICU down the hall checked him over to see if he needed to be moved back into that unit for a higher level of care. He was adamant that he did not need the ICU, and his heart settled back down shortly.

He was provided with an unintentional distraction from all the drama, when next it was agreed that he should have a second IV line in his arm, "just in case". Well, 2 expert nurses and 6 needle sticks later, his arm won the battle and no new IV made it way into his veins. He was amazingly patient with all the tries, and even thanked everyone for their efforts!

I was comfortable enough with his status to head for home around 9 pm, with a nice heavy rain to keep my mind off the evening's activities. When I spoke with his nurse at 10:30 she said he was sleeping comfortably, which is certainly what he deserves after tonight. I am daring to attend a business lunch tomorrow, but since it's in SF I can just hop over to the hospital afterwards and visit with him after dialysis.

Hopefully things will return to the previous normal and he can wait for the transplant enjoying his books, music and calls and visits by friends and family.
Whew -

And the Verdict Is........

Cheryl just arrived and ran into my Chief Doc in the hallway. I did not see her this morning on rounds. She informed Cheryl that I have been granted SIX more weeks of 1A status. How about that? I guess I can handle some more time here. It's weird because everyone has told me for my situation it would be 2 weeks max. We will take it one day at a time.

It looks like as long as I am here I will be taking a dialysis treatment on Saturdays. It's what they call a "puff" and it goes for 2 hours as opposed to my normal 3 1/2 hour weekday sessions. It avoids excess fluid gain over a 2 day break. It's not my favorite thing but 2 hours seems like nothing compared to my usual.

So we will prepare ourselves for the next stage of our odyssey.

Bob/Irv

Waiting for the next step

The 2-week window of opportunity for Robert J to be in the top tier of the waiting list for a transplant, status 1A, has now passed without any news of available organs. We have been quietly but increasingly anxious to know what's next for him.
According to our transplant coordinator this morning, the team has decided to request an extension of his 1A status, to keep him at the top of the list and in the hospital. This involves arranging a conference call with members of the board of UNOS, the governing body that sets the rules and guidelines for transplant donors and recipients. Because it will take at least day or two to agree on a time for the involved parties to participate in the call, he will remain in the hospital at least until Friday....fortunately the time it takes to arrange the call keeps him in the current 1A status.

We both have mixed emotions about him remaining in the hospital. He is very comfortable, is enjoying reading, music and all the internet contact available via our trusty laptop. And of course he feels safest there, in case of his heart starting trouble again. But of course he would rather live at home with me and the cat, with his Speed TV channel for the upcoming racing season, home-cooked meals, etc. I'm personally glad to have the decision out of our hands for now!

He is having dialysis this morning, and was very upset to be taken to the dialysis unti before getting his breakfast, currently his favorite meal of the day. But he will be done by about 12:30, so is available for visitors after that time today, and all day tomorrow if anyone is going to be in the area. Friday's dialysis time is still unknown, as is Saturday's.......Sunday is wide open for visitors, if he is still there!

Mixed-up Day

First thing this morning at dialysis I started to get chest pain. This the first time I have had any while I am here and the first time in two weeks. I told the nurse and she put me on oxygen. They called a doc who turned out to be one of the nephrologists. She listened to me but basically left me alone. She figured it was excess fluid and the dialysis would take care of it. Luckily within ten minutes it stopped and everyone was relieved. I guess the transplant docs know but I did not see them today. So I have no idea what this means concerning "the decision".

I returned to my room for lunch and in a couple of minutes Andy appeared. We had a very nice visit until he had to dash back to Sacto. He had a Dr. appointment concerning hjs thyroid problem.

So I am happily reading my book right now. Everything is OK at the moment.

Bob/Irv