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.
Friday, July 10, 2009
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
Monday, November 24, 2008
Transplant Tribune: Update
Hello Everyone,
There really is not much to report in this issue. I have been listed at UCSF for a heart-kidney transplant since August 5, and as of right now I have not received that call. I did have a visit with my cardiologist Dr. Rame who told me there has been quite a "rush" of transplants lately and three of the last four have been heart and kidney. Two of those were for Status Two patients like me, people who are waiting at home rather than in the hospital. So I am encouraged by the latest developments.
That is about all at the moment. We hope everyone has a great Thanksgiving!
Bob/Irv
There really is not much to report in this issue. I have been listed at UCSF for a heart-kidney transplant since August 5, and as of right now I have not received that call. I did have a visit with my cardiologist Dr. Rame who told me there has been quite a "rush" of transplants lately and three of the last four have been heart and kidney. Two of those were for Status Two patients like me, people who are waiting at home rather than in the hospital. So I am encouraged by the latest developments.
That is about all at the moment. We hope everyone has a great Thanksgiving!
Bob/Irv
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