Wednesday, July 1, 2009
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
Sunday, August 31, 2008
Transplant Tribune: A Trip to The City
Dear Friends and Relatives-
Thursday we made a voyage to UCSF for some scheduled appointments. First we attended the Heart and Lung Transplant support group which consists of mostly lung transplant recipients and prospective recipients. One man has been waiting for a double lung in the hospital for over four months. There is one heart transplant guy who is going on five years since his transplant and is doing great. There was one other man who is waiting for a heart and kidney like I am but he is not on dialysis yet so he seems to be doing OK. Overall it was a beneficial experience since everyone who has had a transplant says it is rough going but well worth it.
Next appointment was in the transplant clinic with the pre-transplant coordinator Celia Rifkin and the transplant cardiologist Dr. Rame. I am a priority two candidate which means I am behind those on priority one due to my relative good health. Those highest on the list are either on a ventricular assistance device (VAD) or are in the hospital on IV medications to sustain them until organs are found. So the good news
is I am doing well but I am not sick enough to get first crack at a heart and kidney. I do come before heart only since I am waiting for two matching organs. My goal is to stay as fit as I can for as long as I can which may keep me on the bottom of the list but is preferable to either having a VAD implanted (a major surgery in itself) or languishing in the hospital for weeks or months.
I asked Celia couple of questions that I found interesting. The operation takes about ten hours. I wondered what they do with your original heart. They ask permission to use it for research. And I need to be within four hours of UCSF at all times with a few necessities on hand to start up anytime. It is not uncommon to get a call then have the surgeon reject the organs as inadequate. In my case it may be a while as they are not willing to settle for inferior organs so it may take some time to find the right match.
It was well over 100 degrees in Livermore and nearly 90 in SF which is highly unusual as it is almost always foggy and cold up on Parnassus where the hospital is located. So we headed home via the coast route and had a nice dinner in Half Moon Bay where it was bright and sunny and over 80 degrees.
My cast is completely off and it seems I have pretty much recovered form my broken leg. I even drove my S2000 and had no trouble working the clutch with my left leg. A couple more sessions of physical therapy and I should be good to go.
Best wishes to all-
R,J. Moss
Thursday we made a voyage to UCSF for some scheduled appointments. First we attended the Heart and Lung Transplant support group which consists of mostly lung transplant recipients and prospective recipients. One man has been waiting for a double lung in the hospital for over four months. There is one heart transplant guy who is going on five years since his transplant and is doing great. There was one other man who is waiting for a heart and kidney like I am but he is not on dialysis yet so he seems to be doing OK. Overall it was a beneficial experience since everyone who has had a transplant says it is rough going but well worth it.
Next appointment was in the transplant clinic with the pre-transplant coordinator Celia Rifkin and the transplant cardiologist Dr. Rame. I am a priority two candidate which means I am behind those on priority one due to my relative good health. Those highest on the list are either on a ventricular assistance device (VAD) or are in the hospital on IV medications to sustain them until organs are found. So the good news
is I am doing well but I am not sick enough to get first crack at a heart and kidney. I do come before heart only since I am waiting for two matching organs. My goal is to stay as fit as I can for as long as I can which may keep me on the bottom of the list but is preferable to either having a VAD implanted (a major surgery in itself) or languishing in the hospital for weeks or months.
I asked Celia couple of questions that I found interesting. The operation takes about ten hours. I wondered what they do with your original heart. They ask permission to use it for research. And I need to be within four hours of UCSF at all times with a few necessities on hand to start up anytime. It is not uncommon to get a call then have the surgeon reject the organs as inadequate. In my case it may be a while as they are not willing to settle for inferior organs so it may take some time to find the right match.
It was well over 100 degrees in Livermore and nearly 90 in SF which is highly unusual as it is almost always foggy and cold up on Parnassus where the hospital is located. So we headed home via the coast route and had a nice dinner in Half Moon Bay where it was bright and sunny and over 80 degrees.
My cast is completely off and it seems I have pretty much recovered form my broken leg. I even drove my S2000 and had no trouble working the clutch with my left leg. A couple more sessions of physical therapy and I should be good to go.
Best wishes to all-
R,J. Moss
Sunday, July 20, 2008
Return of the Transplant Tribune
Dear Faithful Readers
We felt like enough has transpired in the last two months to warrant a revival of the Transplant Tribune or TT as we say in in the biz. As you can see this is no longer the Kidney Chronicles (KC) as I was turned down back in April by the kidney folks due to the condition of my heart. At that time my cardiologist who is with the heart-lung transplant program recommended I switch to peritoneal dialysis instead of the hemodialysis I am now on. This requires the surgical insertion of a catheter in the abdomen and a 7 day-a-week treatment at home during the night. This is known to be gentler on the cardiac condition than going to the center three times a week for 3 1/2 hours at a throw.
In May we arranged dialysis in Florida to enable us to visit Don and Diana and David as well our dear Aunt Mitzi. Unfortunately our plans changed when I got out of bed too fast one night and passed out from low blood pressure. I fell on the floor, twisted my ankle thereby breaking my fibula just below the knee. We happened to be at UCSF all the next day and I hobbled around not knowing it was broken until my dear wife and Dr. Rame convinced me to brave the evils of the UCSF Emergency Room. After nine joyous hours captive there I was released at 2:00 AM in a splint. I returned to orthopedics at the Mt. Zion campus the next week to be fully cast to above my knee in a beautiful blue plaster cast. Equipped with a rented wheelchair and a wonderful wife I have been generally getting around OK until Friday when the second (purple) cast was removed and replaced with an air cast also known as a boot. This will be worn to sort of walk for another six weeks. Pretty long but
a lot better than 7 weeks in a cast rolling round in a wheelchair.
So by now if you are still awake you are wondering why this is called the Transplant Tribune (TT) and not the Fracture Follies (FF). That is because the great minds of the heart and lung department decided I would again be a candidate for a heart-kidney transplant if certain conditions are met. These mainly involve applying for a temporary exception to move me to a higher classification on the list to be eligible for better organs sooner. This action has been pretty well accepted by the medical gurus in heart-lung so I am now embarked on another series of studies and tests to assure my ability to undergo this procedure successfully. We hope once again that this time is the charm and a good result can be achieved.
I would like to thank all those that helped cart me around to various places while in the wheelchair even those that seemed to get a charge out of doing wheelies with me in the chair. Especially appreciated are the Caples guys and my son Andrew who constructed a very nifty ramp to enable me to enter and exit our house. And of course my dearest Cheryl who has done mostly everything for the last 7 weeks.
Enough reading already. I hope everything is OK in your worlds and thanks again for all the interest and support.
Robert J. Moss aka Bob Moss aka Irv Moss aka Bobby Moss
We felt like enough has transpired in the last two months to warrant a revival of the Transplant Tribune or TT as we say in in the biz. As you can see this is no longer the Kidney Chronicles (KC) as I was turned down back in April by the kidney folks due to the condition of my heart. At that time my cardiologist who is with the heart-lung transplant program recommended I switch to peritoneal dialysis instead of the hemodialysis I am now on. This requires the surgical insertion of a catheter in the abdomen and a 7 day-a-week treatment at home during the night. This is known to be gentler on the cardiac condition than going to the center three times a week for 3 1/2 hours at a throw.
In May we arranged dialysis in Florida to enable us to visit Don and Diana and David as well our dear Aunt Mitzi. Unfortunately our plans changed when I got out of bed too fast one night and passed out from low blood pressure. I fell on the floor, twisted my ankle thereby breaking my fibula just below the knee. We happened to be at UCSF all the next day and I hobbled around not knowing it was broken until my dear wife and Dr. Rame convinced me to brave the evils of the UCSF Emergency Room. After nine joyous hours captive there I was released at 2:00 AM in a splint. I returned to orthopedics at the Mt. Zion campus the next week to be fully cast to above my knee in a beautiful blue plaster cast. Equipped with a rented wheelchair and a wonderful wife I have been generally getting around OK until Friday when the second (purple) cast was removed and replaced with an air cast also known as a boot. This will be worn to sort of walk for another six weeks. Pretty long but
a lot better than 7 weeks in a cast rolling round in a wheelchair.
So by now if you are still awake you are wondering why this is called the Transplant Tribune (TT) and not the Fracture Follies (FF). That is because the great minds of the heart and lung department decided I would again be a candidate for a heart-kidney transplant if certain conditions are met. These mainly involve applying for a temporary exception to move me to a higher classification on the list to be eligible for better organs sooner. This action has been pretty well accepted by the medical gurus in heart-lung so I am now embarked on another series of studies and tests to assure my ability to undergo this procedure successfully. We hope once again that this time is the charm and a good result can be achieved.
I would like to thank all those that helped cart me around to various places while in the wheelchair even those that seemed to get a charge out of doing wheelies with me in the chair. Especially appreciated are the Caples guys and my son Andrew who constructed a very nifty ramp to enable me to enter and exit our house. And of course my dearest Cheryl who has done mostly everything for the last 7 weeks.
Enough reading already. I hope everything is OK in your worlds and thanks again for all the interest and support.
Robert J. Moss aka Bob Moss aka Irv Moss aka Bobby Moss
Friday, April 25, 2008
Quick Update- on the lighter side
Dear friends and family,
We have not managed to respond to each and every one of you since sending out the news of the kidney transplant being denied by UCSF. We do want you to know that we are feeling better about this decision - in fact, Bob is more lighthearted than he's been in several years! He is personally very relieved not to have to face that procedure and possible complications, and suddenly is feeling better than he has in quite some time. He is doing a lot more driving, and keeping up well at cardiac rehab. He is not objecting to me making some small travel plans, so of course I'm a happy camper, being able to anticipate some getaways in the next few months. So please don't worry about us, if you were, because we are moving forward and planning to enjoy life to the fullest while we can - just like everyone should!
Happy Spring to all, and please do continue to keep in touch!
With a smile,
Cherie - and Bob/RJ/Irving
We have not managed to respond to each and every one of you since sending out the news of the kidney transplant being denied by UCSF. We do want you to know that we are feeling better about this decision - in fact, Bob is more lighthearted than he's been in several years! He is personally very relieved not to have to face that procedure and possible complications, and suddenly is feeling better than he has in quite some time. He is doing a lot more driving, and keeping up well at cardiac rehab. He is not objecting to me making some small travel plans, so of course I'm a happy camper, being able to anticipate some getaways in the next few months. So please don't worry about us, if you were, because we are moving forward and planning to enjoy life to the fullest while we can - just like everyone should!
Happy Spring to all, and please do continue to keep in touch!
With a smile,
Cherie - and Bob/RJ/Irving
Tuesday, April 15, 2008
Kidney Chronicles: News At Last
Dear friends and family,
Our 3-year rollercoaster ride on the way to a kidney transplant decision is finally over. We got the call late yesterday from our nurse-coordinator at UCSF telling us that the transplant selection committee has decided that a transplant is too risky for Bob, in spite of his cardiologist's arguments. Their main reason given was that his frequent low blood pressure would add extra risk during surgery, and put the new kidney at risk for survival after the surgery. Losing that kidney would be terrible for Bob as well as Dave, who should certainly keep both his kidneys if there is such a high chance that the transplant would not work in the long run.
Bob is handling this news much better than I am, and he has a sense of relief at not having to face the surgery and all the follow-up drugs and treatments. I of course am inclined to want to get another opinion from another hospital, but he does not want to go through this process again, understandably. In a day or two when I settle down I will ask for more details about the decision from the kidney docs, just to help with closure on this subject. I am having a hard time accepting that this is the 'final answer', after all the ups and downs.
The idea of continuing on dialysis forever, with all the extreme diet and fluid limitations, is something we both have to come to terms with. Of course it's wonderful that people with kidney failure can continue to lead a fairly normal life with regular dialysis treatments, but it is hard on Bob's heart and we will have to adjust our thinking to accept it as a permanent lifestyle, and not just something to get past temporarily.
We continue to value and appreciate all of you in our life, and look forward to having more time to socialize, now that we will be spending less time at UCSF.
With love,
Cherie
Our 3-year rollercoaster ride on the way to a kidney transplant decision is finally over. We got the call late yesterday from our nurse-coordinator at UCSF telling us that the transplant selection committee has decided that a transplant is too risky for Bob, in spite of his cardiologist's arguments. Their main reason given was that his frequent low blood pressure would add extra risk during surgery, and put the new kidney at risk for survival after the surgery. Losing that kidney would be terrible for Bob as well as Dave, who should certainly keep both his kidneys if there is such a high chance that the transplant would not work in the long run.
Bob is handling this news much better than I am, and he has a sense of relief at not having to face the surgery and all the follow-up drugs and treatments. I of course am inclined to want to get another opinion from another hospital, but he does not want to go through this process again, understandably. In a day or two when I settle down I will ask for more details about the decision from the kidney docs, just to help with closure on this subject. I am having a hard time accepting that this is the 'final answer', after all the ups and downs.
The idea of continuing on dialysis forever, with all the extreme diet and fluid limitations, is something we both have to come to terms with. Of course it's wonderful that people with kidney failure can continue to lead a fairly normal life with regular dialysis treatments, but it is hard on Bob's heart and we will have to adjust our thinking to accept it as a permanent lifestyle, and not just something to get past temporarily.
We continue to value and appreciate all of you in our life, and look forward to having more time to socialize, now that we will be spending less time at UCSF.
With love,
Cherie
Thursday, March 27, 2008
Kidney Chronicles... Hold Those Good Thoughts For One More Week!
Hi - just a quick update. We got a call today from our transplant coordinator, Melissa, telling us that we have to wait yet another week for Bob's case to be presented to the selection committee. That's disappointing, but the good news is that the cardiology docs, headed up by Dr. Rame, have concluded that they definitely recommend that the transplant be approved! That is a huge relief to us - especially after Melissa asked that I get on the extension so she could talk to us both at once. We are now both breathing normally, but there were a few tense moments before she got her message delivered.
The delay in the presentation is due to Dr. Rame needing to be out of town to be a presenter at a conference. He definitely needs to be present at the committee meeting, and is bringing with him Dr. Hoopes, our formerly least favorite cardiac surgeon from last year ( His infamous words "Who are you and why are you here to see me" at an appointment last year may ring a bell). However, we welcome Dr. Hoope's participation since he is in agreement about going ahead with the transplant, and is very well respected among the medical staff.
In addition, we have another new advocate who wants to be present: Dr. Posselt, a kidney transplant surgeon who happened to speak at our last TRIO meeting (Transplant Recipients Int'l Org). I nagged Bob to introduce himself after the meeting, and his apparent well-being and healthy appearance (not to mention good manners) apparently impressed the doc so much that Dr. Posselt is adding his vote to help get this transplant approved. It pays to look better than you feel, for sure! And thanks to our friends at TRIO for providing this bit of serendipity.
So......next Friday, April 4 at noon is when all powers of persuasion need to be flowing to 450 Parnassus Ave! Thanks again for all the support, and my apologies for not such a quick update after all.
Cheers!
Cherie and RJ
The delay in the presentation is due to Dr. Rame needing to be out of town to be a presenter at a conference. He definitely needs to be present at the committee meeting, and is bringing with him Dr. Hoopes, our formerly least favorite cardiac surgeon from last year ( His infamous words "Who are you and why are you here to see me" at an appointment last year may ring a bell). However, we welcome Dr. Hoope's participation since he is in agreement about going ahead with the transplant, and is very well respected among the medical staff.
In addition, we have another new advocate who wants to be present: Dr. Posselt, a kidney transplant surgeon who happened to speak at our last TRIO meeting (Transplant Recipients Int'l Org). I nagged Bob to introduce himself after the meeting, and his apparent well-being and healthy appearance (not to mention good manners) apparently impressed the doc so much that Dr. Posselt is adding his vote to help get this transplant approved. It pays to look better than you feel, for sure! And thanks to our friends at TRIO for providing this bit of serendipity.
So......next Friday, April 4 at noon is when all powers of persuasion need to be flowing to 450 Parnassus Ave! Thanks again for all the support, and my apologies for not such a quick update after all.
Cheers!
Cherie and RJ
Monday, March 24, 2008
Kidney Chronicles... Still Wishin' and Hopin'?
Happy Spring, officially! Here's the latest on this seemingly never-ending story. Bob had his second Echo-stress test as scheduled on March 12, and he felt strong and comfortable strolling along on the treadmill. However, the staff administering the test and watching the feedback from all his heart monitors decided to stop him after 10 minutes, even though he was feeling fine. That has us concerned, but so far no official results........ cardiologist Dr Rame was away last week at a conference, and plans to meet with some of the other docs who have worked on Bob to get their input on the results before making his recommendations. The current plan, according to our transplant coordinator, Melissa, is for Bob's case to be presented once again ( along with Dr. Rame's feedback) to the kidney transplant selection committee this coming Friday March 28. So we welcome any and all positive energy, good vibes, prayers and cheerleading on Bob's behalf for that day. The longer this goes on, the more of a longshot it seems to be, so we will take any and all help from friends and family!
In the meantime, he is feeling relatively energetic, keeping up on his exercise, and enjoying every race he watches on TV. Aside from the extreme dietary restrictions due todialysis, he is a pretty happy camper under the circumstances. He did the driving to Sacramento yesterday for a very fun day at Andy and Linsey's, where we both enjoyed a great dinner and a rousing game of Mexican dominoes with Linsey's parents, brother, and sister-in-law! Those of you knowing Bob's interest in game-playing can appreciate what a positive sign this was!
We won't expect an answer on Friday, but hope for information early next week. We will of course share any news as soon as we receive it. Poor Dave has this hanging over his head also - who knew that more than 2 years after offering his kidney, we still don't know our collective futures!
Here's hoping all of you are well and happy and enjoying this great time of year.
Love,
Cherie - and Bob, aka Irving
In the meantime, he is feeling relatively energetic, keeping up on his exercise, and enjoying every race he watches on TV. Aside from the extreme dietary restrictions due todialysis, he is a pretty happy camper under the circumstances. He did the driving to Sacramento yesterday for a very fun day at Andy and Linsey's, where we both enjoyed a great dinner and a rousing game of Mexican dominoes with Linsey's parents, brother, and sister-in-law! Those of you knowing Bob's interest in game-playing can appreciate what a positive sign this was!
We won't expect an answer on Friday, but hope for information early next week. We will of course share any news as soon as we receive it. Poor Dave has this hanging over his head also - who knew that more than 2 years after offering his kidney, we still don't know our collective futures!
Here's hoping all of you are well and happy and enjoying this great time of year.
Love,
Cherie - and Bob, aka Irving
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