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
Friday, November 20, 2009
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
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