Tuesday, December 29, 2009
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!
Sunday, December 27, 2009
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!
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!
Saturday, December 19, 2009
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.
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.
Friday, December 11, 2009
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!
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!
Thursday, December 10, 2009
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.
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.
Wednesday, December 9, 2009
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!
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!
Friday, December 4, 2009
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!
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!
Monday, November 30, 2009
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.
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.
Saturday, November 28, 2009
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.
Friday, November 20, 2009
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
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
Thursday, November 19, 2009
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!
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!
Tuesday, November 17, 2009
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!
Monday, November 16, 2009
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!
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.
Sunday, November 15, 2009
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.....
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.....
Saturday, November 14, 2009
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.
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.
Friday, November 13, 2009
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!
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!
Thursday, November 12, 2009
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 ~
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!
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!
Wednesday, November 11, 2009
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!
(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!
Saturday, November 7, 2009
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
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
Sunday, October 25, 2009
Rockin' pneumonia and the boogie-woogie blues.....
Life has continued to be quiet and uneventful this month, except for Robert J's unfortunate cold that became pneumonia last week. We are pretty good at dealing with cardiac and vascular situations by now, but a simple cold was outside of my area of so-called expertise. After waiting the requisite week for it to go away, the cough just got worse, so finally a trip to his primary care doc and a chest x-ray explained the problem. Serious cough syrup and some antibiotics improved things within 24 hours, and our hero (and his other half) are happily sleeping through most of the night again, after too many hours lost to coughing in the last week.
In other news: At the risk of jinxing our delicate insurance situation, I will reveal that we are approaching a major milestone on Nov.1: that is when Medicare will become RJ's primary insurance, and his retiree insurance (what's left of it) will be secondary. This is huge, since our friendly financial rep from UCSF was quite certain that the primary insurance would not last until this date, after all the latest hospital bills from early summer. I spent several weeks in a pretty panicked state, looking for alternative coverage with little luck. Had the transplant happened this summer, the insurance would have run out for sure, so I have to look at all the delays as perhaps a good thing, in the big picture. Of course keeping him out of the hospital until the transplant will also be very helpful, and that is our daily goal. His insurance situation is one of the thousands that could and should be helped by health care reform, so national politics are especially personal for us! Fingers are crossed for all of us to see better options in the near future.
In other news: At the risk of jinxing our delicate insurance situation, I will reveal that we are approaching a major milestone on Nov.1: that is when Medicare will become RJ's primary insurance, and his retiree insurance (what's left of it) will be secondary. This is huge, since our friendly financial rep from UCSF was quite certain that the primary insurance would not last until this date, after all the latest hospital bills from early summer. I spent several weeks in a pretty panicked state, looking for alternative coverage with little luck. Had the transplant happened this summer, the insurance would have run out for sure, so I have to look at all the delays as perhaps a good thing, in the big picture. Of course keeping him out of the hospital until the transplant will also be very helpful, and that is our daily goal. His insurance situation is one of the thousands that could and should be helped by health care reform, so national politics are especially personal for us! Fingers are crossed for all of us to see better options in the near future.
Sunday, October 4, 2009
Long Time, No Blog
Sorry to ignore my blog for so long. Fact is as has been the case nothing to report. This means nothing bad too so it is definitely not all gloom and doom. I did visit the docs recently and it was the same story; stay well and keep your phone charged.
We met a very nice couple at the UCSF Support Group. He has had a heart-kidney transplant and is doing great. He has much the same health history as me; diabetes, dialysis, and of course heart issues. What he has that I don't is a 1989 Ferrari Testarossa that he allowed me to sit in at his house. They had invited us over to Pacifica for their annual block party which was quite nice.
In a couple of weeks I will be having a sleep study to determine why I am so tired all the time. I will stay overnight and be observed sleeping out in Walnut Creek. Sounds like a blast.
Had a great dinner in Sacto the other night to celebrate Andy's 29th BD. Leslie was able to join us and of course Linsey was there with her new jewelry. Plans are moving ahead on that as well so right now everyone seems content.
That about handles it for now
RJ/Bob/Irv
We met a very nice couple at the UCSF Support Group. He has had a heart-kidney transplant and is doing great. He has much the same health history as me; diabetes, dialysis, and of course heart issues. What he has that I don't is a 1989 Ferrari Testarossa that he allowed me to sit in at his house. They had invited us over to Pacifica for their annual block party which was quite nice.
In a couple of weeks I will be having a sleep study to determine why I am so tired all the time. I will stay overnight and be observed sleeping out in Walnut Creek. Sounds like a blast.
Had a great dinner in Sacto the other night to celebrate Andy's 29th BD. Leslie was able to join us and of course Linsey was there with her new jewelry. Plans are moving ahead on that as well so right now everyone seems content.
That about handles it for now
RJ/Bob/Irv
Tuesday, September 15, 2009
No Nooz
Nothing going on over on the transplant side. Most of our recent activity has involved the engagement of Linsey and Andy. We made a nice trip to Napa with all the Flukens to look at venues. Looks like they are leaning toward Napa Valley Country Club. Linz and her mom are already deep into this. I think it will be fun helping out with the arrangements.
Next weekend we are going to a BBQ at the home of a couple we met at the transplant group. He had very much the same situation as me; diabetes, kidney failure and heart disease. He has gotten his transplant and is doing great. He has been calling me for encouragement just like my revered father-in-law Bill Cook used to do for people when he had his liver transplant. Should be fun. And oh yeah I forgot to say he has a Ferrari.
All for now. Stay tuned.
Bob/Irv/RJ
Next weekend we are going to a BBQ at the home of a couple we met at the transplant group. He had very much the same situation as me; diabetes, kidney failure and heart disease. He has gotten his transplant and is doing great. He has been calling me for encouragement just like my revered father-in-law Bill Cook used to do for people when he had his liver transplant. Should be fun. And oh yeah I forgot to say he has a Ferrari.
All for now. Stay tuned.
Bob/Irv/RJ
Tuesday, August 25, 2009
An Engagement!
Last Friday evening Andy proposed to Linsey in the Rose Garden in McKinley Park in Sacramento. We are delighted to say the least. The news was shared with all the folks at the 60th birthday party Cherie and the kids arranged for me. I like the opportunity to share some happy news from time to time, not more of this dull medical stuff.
So until next time
Bob/Irv/ RJ
So until next time
Bob/Irv/ RJ
Sunday, August 23, 2009
A happy guy in the Laguna Seca paddock
Despite the heat and challenges of walking the hilly path from the parking lot, RJ was very happy to be back at Laguna Seca for the first event in 5 years. The "handicap accessible" transportation leaves a lot to be desired, but it eventually got us back up the hill to our car. 
Thursday, August 20, 2009
Time Travels On
Once again I am pleased to report no adventures to share. All has been stable and well; no chest pain, no cardiac catheterization, no drama. Of course this also means no transplant. Other candidates are more needy at the moment. I am still listed as priority 1B but when Dr. McGlothlin saw my blood type she said "it's gonna be a while". It already has, but that is the way it is.
Cherie and I managed an outing we haven't done for 5 years; we went to a race. We went to the Monterey Historics and generally it worked out pretty well. My legs were a bit wobbly after walking down (?) a hill. But all went well and we enjoyed the day checking out the rare and significant racing cars on the track.
Andy's leg seems OK despite some pain and swelling. He will be taking blood thinners for some time which is a drag for the poor kid.
Sorry nothing monumental to report this time. Best to everyone and thanks for reading my blog.
Bob/Irv/RJ
Cherie and I managed an outing we haven't done for 5 years; we went to a race. We went to the Monterey Historics and generally it worked out pretty well. My legs were a bit wobbly after walking down (?) a hill. But all went well and we enjoyed the day checking out the rare and significant racing cars on the track.
Andy's leg seems OK despite some pain and swelling. He will be taking blood thinners for some time which is a drag for the poor kid.
Sorry nothing monumental to report this time. Best to everyone and thanks for reading my blog.
Bob/Irv/RJ
Sunday, August 9, 2009
Aug. 5 marks 1 year on The List ....and counting
We passed the 1 year anniversary of RJ officially making it onto the heart-kidney transplant list, never imagining we would still be waiting. It was already a pretty special date: the wedding anniversary of his parents (1945), and the anniversary of my dad's death (1993). So we are not likely to forget it's significance to this generation.
The good news, of course, is that there is no bad news. We have been exceedingly careful since the last hospital stays to keep RJ's diet lower than ever in sodium, potassium and fluids, since those seem to be the most dangerous factors in causing his congestive heart failure. He's doing fine at cardiac rehab classes again, and his only complaint is feeling very tired all the time - not depressed, but without energy. In the big picture, we'll settle for this scenario and skip the drama!
Son Andrew is doing much better. His leg pain is nearly gone, he's back to work, and just has to have regular lab work done as long as he is on the blood thinners, for the next few months. He and Linsey even got their ancient AC system replaced, just in time for this latest heat wave.
All in all, few complaints from the Moss family. RJ and I will continue our frequent visits to the UCSF transplant clinic so that no changes in his condition sneak past us.
The good news, of course, is that there is no bad news. We have been exceedingly careful since the last hospital stays to keep RJ's diet lower than ever in sodium, potassium and fluids, since those seem to be the most dangerous factors in causing his congestive heart failure. He's doing fine at cardiac rehab classes again, and his only complaint is feeling very tired all the time - not depressed, but without energy. In the big picture, we'll settle for this scenario and skip the drama!
Son Andrew is doing much better. His leg pain is nearly gone, he's back to work, and just has to have regular lab work done as long as he is on the blood thinners, for the next few months. He and Linsey even got their ancient AC system replaced, just in time for this latest heat wave.
All in all, few complaints from the Moss family. RJ and I will continue our frequent visits to the UCSF transplant clinic so that no changes in his condition sneak past us.
Thursday, July 30, 2009
Howdy Ho
This has been quite a remarkable week for several members of the family. Our Andrew has had a soreness in his lower leg that was bothering him a lot. After a doctor visit and an ultrasound he was sent directly to the ER at Sutter General in Sacramento. The diagnosis is a deep vein thrombosis, a blood clot in his leg. This is quite unusual as he does not sit for long periods of time, but there it is anyway. He is on blood thinners at home after spending one night in the hospital. He is supposed to rest but it is driving him crazy. They are allowing him to work next week. We were in Sac twice this week helping him and Linsey around the house. Just for additional fun their air conditioning went south last week during a Sac hot spell. The luck (or lack of) is incredible.
For me I did have an appointment with my new cardio. My dear wife had to mention I thrash around in my sleep (I disagree but what the heck, I am asleep). The doc immediately ordered a sleep study which could lead to having to wear one of those fighter pilot masks. I pouted and generally acted poorly for a while. They left it to me to decide so I am thinking hard.
So that about handles it for now. We will be attnding the Christian Family BBQ this coming weekend which should be fun.
Bob/Irv
For me I did have an appointment with my new cardio. My dear wife had to mention I thrash around in my sleep (I disagree but what the heck, I am asleep). The doc immediately ordered a sleep study which could lead to having to wear one of those fighter pilot masks. I pouted and generally acted poorly for a while. They left it to me to decide so I am thinking hard.
So that about handles it for now. We will be attnding the Christian Family BBQ this coming weekend which should be fun.
Bob/Irv
Thursday, July 16, 2009
Festival of Fire
I cannot let this pass without attempting to describe the event we attended last night. Along with the Frates' and Henrys we had a nice dinner in Lafayette then vanned over to a large parking lot in the Port of Oakland for the Crucible Fire Arts Festival. This consisted of ingenious and imaginative metal sculptures that each used intense flames as part of the presentation. There were noises and heat all around and it was fascinating. We finally dragged ourselves away long after our bedtimes but thoroughly blown totally away.
I was able to do cardiac rehab in the morning. dialysis in the afternoon and the Festival at night without any problems.
I was able to do cardiac rehab in the morning. dialysis in the afternoon and the Festival at night without any problems.
Friday, July 10, 2009
A Nice Quiet Week
After all the adventures lately it was neat to have a normal week. Dialysis of course and a trip Thursday to UCSF for a follow-up appointment. Everything looked OK at the exam but of course this can change at any moment. At least I am still listed 1B on the list even though I am not on a device nor residing in the hospital.
Thanks to everyone for the calls, emails and attention to this blog. It means the world to both of us.
Robert J.
Thanks to everyone for the calls, emails and attention to this blog. It means the world to both of us.
Robert J.
Sunday, July 5, 2009
Back to Reality
Grilling chicken on the barbie, watching last night's NASCAR race, driving our S2000 with the top down.....a few normal things that are so welcome after the last couple of weeks. I am grateful to all of my family and friends who helped me through this last adventure. Tomorrow it is back to dialysis and later in the week a couple of doctor appointments. Thankfully back to some form of reality.
Friday, July 3, 2009
Home at last!
Happy to report that I was able to leave the hospital this evening at 6:30 with my husband at my side. He was even allowed to walk out to the parking garage with me, which is a first. So we are now ready to resume our normal, hopefully boring lives back in Livermore starting right now!
Thursday, July 2, 2009
Livermore bound?
According to RJ this afternoon, the plan is to let me bring him home on Friday 7/3 after his dialysis treatment. Could mean a very long day waiting for the actual paperwork to be complete, but he will be thrilled to be able to sleep at home for the first time in 11 nights.
(Kitty Lucy and I will be very happy to have him back also.) The amazing RJ bounces back yet again - Hooray!
(Kitty Lucy and I will be very happy to have him back also.) The amazing RJ bounces back yet again - Hooray!
Transplant Expo
We are fortunate to have had a chance to share Bob's story on a much larger scale recently, thanks to a serendipitous (?) opportunity stemming from our new extended family: daughter Leslie's new sister-in-law worked for a company that does publicity and promotions for a drug company that manufactures a major drug used to prevent rejection of transplanted organs. She knew the company was working in partnership with Donate Life America, to create a museum-quality exhibit celebrating transplantation and the heroics that make it possible, and so asked if we were willing to participate. Of course we were glad to help with publicity for this very important cause. A photographer came to our home in April for our "photo shoot", and the resulting pictures, complete with several quotes from Bob, were first displayed at the 2009 Transplant Expo for health care professionals in Boston the end of May 2009. The main goal of this exhibit is to raise awareness of transplantation and to inspire and motivate visitors to sign up to become organ donors. The first area of the exhibit will feature stories of life on the waiting list. The purpose of the exhibit was to introduce visitors to the need for action by helping them connect with people who are, or have been, through the uncertainty surrounding the transplant waiting list.
Cherie / Cheryl
Wednesday, July 1, 2009
Evening update:
After I left this evening Irving got moved out of ICU into a standard room, which is progress. He is unhappy about having a roommate now, but glad to be moving in the direction of less care and maybe home in a few days. He very much enjoyed a visit from 3 dear friends before the move, so all in all it has been a very positive day.
July 1
Irv had a good night's sleep and has had no problems since being completely off oxygen and nitroglycerin for the first time since last Thursday. Now he has to track down today's attending doc to get permission to walk around and see how that goes. He is certain he will be fine, and hopes to get to move out of ICU to a regular room.
Tuesday, June 30, 2009
Transplant Tribune: Improvements
Hello all,
Just a quick note to tell you that our hero is much improved already, in spite of how sick he got. He's off all the IV's now except for the Nitroglycerin, which is being decreased hourly until it's stopped. If that goes well he will get to move out of ICU in a day or so. He is still higher on the transplant priority list than when he was at home, and we just trust that it will happen when it's meant to. We are always aware that he is far from the only person in need of a transplant, even though he is at the top of my list!
Thanks again for all the love and support - it is working miracles!
Cherie / Cheryl
Just a quick note to tell you that our hero is much improved already, in spite of how sick he got. He's off all the IV's now except for the Nitroglycerin, which is being decreased hourly until it's stopped. If that goes well he will get to move out of ICU in a day or so. He is still higher on the transplant priority list than when he was at home, and we just trust that it will happen when it's meant to. We are always aware that he is far from the only person in need of a transplant, even though he is at the top of my list!
Thanks again for all the love and support - it is working miracles!
Cherie / Cheryl
Sunday, June 28, 2009
Transplant Tribune: More adventures
Hi everyone,
Bob aka Irving aka RJ asked me to update those of you who we have not been in contact with this week. You can skip to the end if this is all TMI...
After his hospital release Thurs 6/18 he felt good and we enjoyed our scheduled events over the weekend. A previously planned overnight plane trip to Long Beach seemed very achievable, so we let the transplant coordinator know we would be out of town just overnight in case we got a call from them. ( Should have discussed the trip with the cardiologist in more detail, as it turns out).
We enjoyed a great seafood dinner and hotel room with a harbor view, then visited my quirky great-aunt Bessie on Tues. That evening during dinner Bob started having chest pains again, and after the usual arguments I took him to the closest ER instead of the airport for our 8 pm flight home. Turned out he was having another heart attack, and ended up spending 3 nights at Community Hospital of Long Beach in ICU ( very funky and basic, compared to what we are used to). Despite my having lots of preparation, with his RX lists, doctor contact numbers, etc, it was very scary to be in a strange hospital where his unusual medical condition was not a familiar one. I was able to contact Dr Rame at UCSF who worked very closely with the local cardiologist ( and me) and the decision was made that Bob needed another angiogram, preferably at UCSF, to see what was causing this new event. He was stable until thurs evening when he started with pains again for no apparent reason.
At that point we escalated our efforts to get him flown to UCSF. Luckily I had been a good travel agent for us, for a change, and had trip cancellation insurance in case we weren't able to travel at the last minute. That policy also included medical coverage, and so they were the ones to arrange and pay for the door-to-door ambulance, private medical jet with nurses on board, and ambulance from Oakland airport to UCSF. By time this was all arranged with all the entities involved - including the always-challenging issue of finding an available bed at UCSF - it was early Sat. morning 6/27.
The nurses from the flight crew and ambulance team collected us at the LB hospital at 12:15 am. We were loaded into the little Cessna Citation jet, with Bob's IV's and oxygen continually going, and took off at 1:45 am. Ten minutes before landing in Oakland, he started having chest pains again which made the ride way too scary. The ambulance was waiting on the tarmac for us, and it was lights and siren all the way across the Bay Bridge to UCSF, where we arrived at 3:45 am. He was taken right to ICU where a rotating team of 6 to 8 docs and specialists worked on him to get him stable again. Dr Rame came in at 6 am, unhappy that I had not called him immediately when we landed ( I thought my job of phoning was done by then). They took him back to the cath lab for another look at the interior of his heart, at 7 am.
He was in severe congestive heart failure at this point, so they inserted a balloon pump into his femoral artery to help his heart do a better job of pumping blood. He was moved back to the ICU mid-morning Sat, where he will remain, flat on his back, for 3 to 4 days while they moniter him very closely. They plan to remove the pump in a few days and see how he does on his own. In the meantime the silver lining is that in this condition, his transplant waitlist status is moved into the top priority category so his chances of getting the transplant are much higher. (Of course there are other patients in this highest category too, but possibilities are much better).
He is pretty comfortable now, and actually watching today's NASCAR race on TV with his brother by his side. I will be heading to the hospital for the afternoon and evening, now that I've had a full night's sleep after about 30 hours of being awake. I'm too old for this long without sleep, especially when it not for a fun reason!
Please check with me if you want to visit him - he welcomes the diversion of guests, but resting and doing what the docs say is first and foremost. I'll try and help schedule times for people to see him so he isn't overwhelmed. And of course it helps me knowing he has friends and family seeing him, so that I can get some things done in regular life! If you can't reach me, my sister Robin Caples is doing a great job of handling communications for us. I will not yet give out her phone number until I check with her, however! I will have my iphone with me in the hospital, so Bob can see any emails that come our way.
Your love and support mean the world to us.
Thanks from both of us with all our (damaged or otherwise) hearts,
Cherie / Cheryl
Bob aka Irving aka RJ asked me to update those of you who we have not been in contact with this week. You can skip to the end if this is all TMI...
After his hospital release Thurs 6/18 he felt good and we enjoyed our scheduled events over the weekend. A previously planned overnight plane trip to Long Beach seemed very achievable, so we let the transplant coordinator know we would be out of town just overnight in case we got a call from them. ( Should have discussed the trip with the cardiologist in more detail, as it turns out).
We enjoyed a great seafood dinner and hotel room with a harbor view, then visited my quirky great-aunt Bessie on Tues. That evening during dinner Bob started having chest pains again, and after the usual arguments I took him to the closest ER instead of the airport for our 8 pm flight home. Turned out he was having another heart attack, and ended up spending 3 nights at Community Hospital of Long Beach in ICU ( very funky and basic, compared to what we are used to). Despite my having lots of preparation, with his RX lists, doctor contact numbers, etc, it was very scary to be in a strange hospital where his unusual medical condition was not a familiar one. I was able to contact Dr Rame at UCSF who worked very closely with the local cardiologist ( and me) and the decision was made that Bob needed another angiogram, preferably at UCSF, to see what was causing this new event. He was stable until thurs evening when he started with pains again for no apparent reason.
At that point we escalated our efforts to get him flown to UCSF. Luckily I had been a good travel agent for us, for a change, and had trip cancellation insurance in case we weren't able to travel at the last minute. That policy also included medical coverage, and so they were the ones to arrange and pay for the door-to-door ambulance, private medical jet with nurses on board, and ambulance from Oakland airport to UCSF. By time this was all arranged with all the entities involved - including the always-challenging issue of finding an available bed at UCSF - it was early Sat. morning 6/27.
The nurses from the flight crew and ambulance team collected us at the LB hospital at 12:15 am. We were loaded into the little Cessna Citation jet, with Bob's IV's and oxygen continually going, and took off at 1:45 am. Ten minutes before landing in Oakland, he started having chest pains again which made the ride way too scary. The ambulance was waiting on the tarmac for us, and it was lights and siren all the way across the Bay Bridge to UCSF, where we arrived at 3:45 am. He was taken right to ICU where a rotating team of 6 to 8 docs and specialists worked on him to get him stable again. Dr Rame came in at 6 am, unhappy that I had not called him immediately when we landed ( I thought my job of phoning was done by then). They took him back to the cath lab for another look at the interior of his heart, at 7 am.
He was in severe congestive heart failure at this point, so they inserted a balloon pump into his femoral artery to help his heart do a better job of pumping blood. He was moved back to the ICU mid-morning Sat, where he will remain, flat on his back, for 3 to 4 days while they moniter him very closely. They plan to remove the pump in a few days and see how he does on his own. In the meantime the silver lining is that in this condition, his transplant waitlist status is moved into the top priority category so his chances of getting the transplant are much higher. (Of course there are other patients in this highest category too, but possibilities are much better).
He is pretty comfortable now, and actually watching today's NASCAR race on TV with his brother by his side. I will be heading to the hospital for the afternoon and evening, now that I've had a full night's sleep after about 30 hours of being awake. I'm too old for this long without sleep, especially when it not for a fun reason!
Please check with me if you want to visit him - he welcomes the diversion of guests, but resting and doing what the docs say is first and foremost. I'll try and help schedule times for people to see him so he isn't overwhelmed. And of course it helps me knowing he has friends and family seeing him, so that I can get some things done in regular life! If you can't reach me, my sister Robin Caples is doing a great job of handling communications for us. I will not yet give out her phone number until I check with her, however! I will have my iphone with me in the hospital, so Bob can see any emails that come our way.
Your love and support mean the world to us.
Thanks from both of us with all our (damaged or otherwise) hearts,
Cherie / Cheryl
Wednesday, June 17, 2009
Quick Irving Update
Hi everyone,
I'm on my way to UCSF for today's sure-to-be interesting experiences with our favorite hero. He had some problems last night after I left the hospital, and they are taking another look at his stent today, in fact should be back in the cath lab right now. Perhaps because his insulin pump was turned off for too long, the docs think that may have caused his potassium level to become dangerously elevated, which in turn got his pulse way too low. He called me to report all this after the fact, which was reassuring!
After the possible re-do in the cath lab, he will have to lay flat again for 4 hours, then will have dialysis this afternoon. He gets to stay another night as a result of all this. I don't think he will be up to any visitors but will let you know. I hope to have better reception on my phone today, or at least im capabilities, but can't promise. When I am able I will head outside of the hospital to call, or use the computer in the cafeteria again.....I will let you all know, grapevine style, what the deal is after he's out of the cath lab. Never a dull moment with this guy!
Cross all your collective fingers that this situation may help move him up the transplant list!
Hugs,
Cherie
I'm on my way to UCSF for today's sure-to-be interesting experiences with our favorite hero. He had some problems last night after I left the hospital, and they are taking another look at his stent today, in fact should be back in the cath lab right now. Perhaps because his insulin pump was turned off for too long, the docs think that may have caused his potassium level to become dangerously elevated, which in turn got his pulse way too low. He called me to report all this after the fact, which was reassuring!
After the possible re-do in the cath lab, he will have to lay flat again for 4 hours, then will have dialysis this afternoon. He gets to stay another night as a result of all this. I don't think he will be up to any visitors but will let you know. I hope to have better reception on my phone today, or at least im capabilities, but can't promise. When I am able I will head outside of the hospital to call, or use the computer in the cafeteria again.....I will let you all know, grapevine style, what the deal is after he's out of the cath lab. Never a dull moment with this guy!
Cross all your collective fingers that this situation may help move him up the transplant list!
Hugs,
Cherie
Sunday, March 15, 2009
Maybe Later...
Dear Faithful Readers-
Due to the large outcry I have decided to do a Transplant Trib anyway. As the cryptic subject line suggests my last visit to UCSF was one of good news/bad news. The good news is I am feeling as good as I have in several years, physically and mentally. The bad news is that I am still not sick enough to raise my priority position. The current thinking is to enjoy the present condions but if I have another "event" like I did during the Holidays there may be some re-thinking on this.
So that's what I am going to do. I am enjoying driving my little sports car again and helping Dear Cheryl around the house more. Still doing cardiac rehab exercise and of course dialysis.
That's the whole story right now....thanks for your interest.
Bob/Irv
Due to the large outcry I have decided to do a Transplant Trib anyway. As the cryptic subject line suggests my last visit to UCSF was one of good news/bad news. The good news is I am feeling as good as I have in several years, physically and mentally. The bad news is that I am still not sick enough to raise my priority position. The current thinking is to enjoy the present condions but if I have another "event" like I did during the Holidays there may be some re-thinking on this.
So that's what I am going to do. I am enjoying driving my little sports car again and helping Dear Cheryl around the house more. Still doing cardiac rehab exercise and of course dialysis.
That's the whole story right now....thanks for your interest.
Bob/Irv
Sunday, January 4, 2009
Quick Update: Transplant Tribune
Dear Everyone......
The angiogram went well without indicating any new heart damage. The docs think the chest pain may be caused by too much fluid on board. I had an extra dialysis yesterday and will have my normal one on Monday to remove fluid.
The issue of moving up the transplant list will hopefully be addressed this week. Application must be made to the national organization that controls these listings.
The plan is to go home Monday or Tuesday. I am hoping....
Bob Moss aka Irv
The angiogram went well without indicating any new heart damage. The docs think the chest pain may be caused by too much fluid on board. I had an extra dialysis yesterday and will have my normal one on Monday to remove fluid.
The issue of moving up the transplant list will hopefully be addressed this week. Application must be made to the national organization that controls these listings.
The plan is to go home Monday or Tuesday. I am hoping....
Bob Moss aka Irv
Thursday, January 1, 2009
New Years Greetings from the Transplant Tribune
Dear Friends and Family-
I am sending New Years greetings from my room at UCSF Med Center. No its not because of the transplant sorry to say. I have been having chest pain of late and have been to our local emergency room twice. The first time they sent me home but the latest one (Christmas evening) resulted in a stay locally before being transferred to UCSF on NY Eve.
The plan now is to do an angiogram tomorrow to determine if there is new damage. If so it may be repairable and then I might go home. If not repairable I might be staying here a while. Either way my doc wants to apply for a two-week advancement of my status to 1B. I would then have a window to receive organs if they become available during that time. I hope I can find something out late in the afternoon on Friday.
I will keep the communication coming as matters develop. Thanks for all your support and kind wishes.
Bob Moss aka Irving
I am sending New Years greetings from my room at UCSF Med Center. No its not because of the transplant sorry to say. I have been having chest pain of late and have been to our local emergency room twice. The first time they sent me home but the latest one (Christmas evening) resulted in a stay locally before being transferred to UCSF on NY Eve.
The plan now is to do an angiogram tomorrow to determine if there is new damage. If so it may be repairable and then I might go home. If not repairable I might be staying here a while. Either way my doc wants to apply for a two-week advancement of my status to 1B. I would then have a window to receive organs if they become available during that time. I hope I can find something out late in the afternoon on Friday.
I will keep the communication coming as matters develop. Thanks for all your support and kind wishes.
Bob Moss aka Irving
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