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
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