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
Sunday, August 31, 2008
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
Friday, March 7, 2008
Kidney Chronicles: March Update
Hi everyone,
Seems like it's always something new to interfere with progress, but we are still hopeful that a kidney transplant will take place one of these days! Just have a couple more hitches to deal with:
Dave's abnormal blood labs are nothing dangerous, according to the hemotologist he finally got to see last week. So now the kidney transplant committee has to review the information and of course put their spin on the matter.
Bob's long awaited appintment for the "final" cardiac treadmill test was yesterday, and I felt confident that he would do well, since he has been working out on a treadmill 3 times per week for the last month at his cardiac rehab class. However, this man does nothing easily. For some reason his blood pressure was dangerously low when we arrived for his test, and after 2 1/2 hours of re-checking his pressure, walking him around, giving him water to drink, and consulting with every doc and nurse in the vicinity, he was sent home without doing the test. The good news is that they decided he didn't have to be admitted to the hospital, so we were very happy to head home together. He will try the test again next Wed. March 12, before dialysis. That timing should be safer for him.
Otherwise he's feeling ok - even perked up on Tuesday and took advantage of that sunny spring-like day to dust off the S2000, put the top down, and take a drive to the top of Mt. Diablo. What a treat that was for both of us! So once again, please cross your fingers and toes and send your positive thoughts our way, and we'll channel all that good energy into success!
Hugs to all,
Cherie
Seems like it's always something new to interfere with progress, but we are still hopeful that a kidney transplant will take place one of these days! Just have a couple more hitches to deal with:
Dave's abnormal blood labs are nothing dangerous, according to the hemotologist he finally got to see last week. So now the kidney transplant committee has to review the information and of course put their spin on the matter.
Bob's long awaited appintment for the "final" cardiac treadmill test was yesterday, and I felt confident that he would do well, since he has been working out on a treadmill 3 times per week for the last month at his cardiac rehab class. However, this man does nothing easily. For some reason his blood pressure was dangerously low when we arrived for his test, and after 2 1/2 hours of re-checking his pressure, walking him around, giving him water to drink, and consulting with every doc and nurse in the vicinity, he was sent home without doing the test. The good news is that they decided he didn't have to be admitted to the hospital, so we were very happy to head home together. He will try the test again next Wed. March 12, before dialysis. That timing should be safer for him.
Otherwise he's feeling ok - even perked up on Tuesday and took advantage of that sunny spring-like day to dust off the S2000, put the top down, and take a drive to the top of Mt. Diablo. What a treat that was for both of us! So once again, please cross your fingers and toes and send your positive thoughts our way, and we'll channel all that good energy into success!
Hugs to all,
Cherie
Thursday, February 7, 2008
Kidney Chronicles: Feb. 08 Update
Greetings friends and family,
We had a very lengthy but informative day at UCSF on Tuesday. "Donor Dave" was able to join us and learn more about his very important role in this project! Both he and Bob have completed all the requested lab tests by now, although Dave may have some to repeat. And of course the docs thought up yet another cardiology test for Bob, but it does not sound too invasive.
The most important part of the appointments was with the transplant nephrology doctor, Debra Adey, who ended up committing to being yet another advocate for getting the transplant approved by the selection committee. Bob's UC cardiologist Dr. Rame was able to join us for the appt also, and he contributed his usual energetic arguments for why the transplant is essential, and likely to be successful despite all the concerns about Bob's heart condition.
As a great side note, turns out that Dr. Adey's father was life-long friends with Bob Bondurant of racing fame, and spent many weekends in the press box at Riverside Raceway as a teen! We took that as a positive sign in the "small world" category.
Next steps:
Get the cardiology procedure scheduled and completed soon.
Bob has to increase his exercise to get in better shape for the operation and recovery( he will start doing his cardiac rehab class 3 times per week starting Monday, for starters)
Finish Dave's blood tests to everyone's satisfaction
Present Bob's case yet again before the transplant selection committee!
So we are still hoping for this to happen soon, without any hard guarantees from anyone. Bob is happily driving again with his much-improved eyesight and new glasses, which makes both of us happy.
Happy almost-spring to everyone. This seems like the right season for a miracle, and we will continue working in that direction!
Hopefully,
Cherie
We had a very lengthy but informative day at UCSF on Tuesday. "Donor Dave" was able to join us and learn more about his very important role in this project! Both he and Bob have completed all the requested lab tests by now, although Dave may have some to repeat. And of course the docs thought up yet another cardiology test for Bob, but it does not sound too invasive.
The most important part of the appointments was with the transplant nephrology doctor, Debra Adey, who ended up committing to being yet another advocate for getting the transplant approved by the selection committee. Bob's UC cardiologist Dr. Rame was able to join us for the appt also, and he contributed his usual energetic arguments for why the transplant is essential, and likely to be successful despite all the concerns about Bob's heart condition.
As a great side note, turns out that Dr. Adey's father was life-long friends with Bob Bondurant of racing fame, and spent many weekends in the press box at Riverside Raceway as a teen! We took that as a positive sign in the "small world" category.
Next steps:
Get the cardiology procedure scheduled and completed soon.
Bob has to increase his exercise to get in better shape for the operation and recovery( he will start doing his cardiac rehab class 3 times per week starting Monday, for starters)
Finish Dave's blood tests to everyone's satisfaction
Present Bob's case yet again before the transplant selection committee!
So we are still hoping for this to happen soon, without any hard guarantees from anyone. Bob is happily driving again with his much-improved eyesight and new glasses, which makes both of us happy.
Happy almost-spring to everyone. This seems like the right season for a miracle, and we will continue working in that direction!
Hopefully,
Cherie
Tuesday, January 22, 2008
Kidney Chronicles: Home Again!
Hi everyone,
This has been a better week, and Bob's trip to UCSF yesterday, although a long 12 hours, did not involve an overnight stay! We were surprised to learn that the angiogram they did on his heart showed no new problems since last year. Still lots of partial and complete blockages, but nothing worse than before, and nothing that called for any immediate repairs. The chest pains he's been having several times each week since November are probably due to a combination of things - too much fluid retention a couple of days after each dialysis, being > more active and pushing his heart harder, and maybe even some acid reflux again. A new kidney would take care of the fluid problem, and ease the strain on his heart.
Basically the cardiology team still thinks he should be able to go ahead with the transplant, and we have another doc in our corner to argue his case to the kidney transplant team.
We were pleased to be told yesterday ( coincidentally) that we are scheduled Feb. 5 for a 4-hour series of meetings with transplant folks - we will again meet with the social worker, financial aids experts, doctors, dieticians, and nurses, to make sure that we are fully prepared for transplant surgery and the lifestyle changes, stresses and obligations that will follow. Since we attended this a few years ago, and again last year with the heart transplant program, we > don't expect to be too surprised, but should have more intelligent questions this time around! At least it means that they are still considering Bob as a > probable candidate.
That's it for this week - please assume that no news is good news, as we have not been the best communicators lately. We like to keep everyone informed, and love the calls and emails, but don't always keep up our end of the deal, we know.
Enjoy the chilly sunshine this weekend!
Cherie
This has been a better week, and Bob's trip to UCSF yesterday, although a long 12 hours, did not involve an overnight stay! We were surprised to learn that the angiogram they did on his heart showed no new problems since last year. Still lots of partial and complete blockages, but nothing worse than before, and nothing that called for any immediate repairs. The chest pains he's been having several times each week since November are probably due to a combination of things - too much fluid retention a couple of days after each dialysis, being > more active and pushing his heart harder, and maybe even some acid reflux again. A new kidney would take care of the fluid problem, and ease the strain on his heart.
Basically the cardiology team still thinks he should be able to go ahead with the transplant, and we have another doc in our corner to argue his case to the kidney transplant team.
We were pleased to be told yesterday ( coincidentally) that we are scheduled Feb. 5 for a 4-hour series of meetings with transplant folks - we will again meet with the social worker, financial aids experts, doctors, dieticians, and nurses, to make sure that we are fully prepared for transplant surgery and the lifestyle changes, stresses and obligations that will follow. Since we attended this a few years ago, and again last year with the heart transplant program, we > don't expect to be too surprised, but should have more intelligent questions this time around! At least it means that they are still considering Bob as a > probable candidate.
That's it for this week - please assume that no news is good news, as we have not been the best communicators lately. We like to keep everyone informed, and love the calls and emails, but don't always keep up our end of the deal, we know.
Enjoy the chilly sunshine this weekend!
Cherie
Saturday, January 12, 2008
Kidney Chronicles... Homeward Bound!
Most of you probably have not yet read this morning's edition, but I wanted to let you know right away that Bob is being released from the hospital this afternoon, after all. His echocardiogram was not too alarming, so he can come home today and then will have his angiogram Tuesday or Thursday as an outpatient - hooray! Better yet, I managed to avoid the trip to UCSF today. Brother Gary was on his way to visit, so will deliver Bob home to Livermore - thanks Gary!
Happy weekend everyone!
Cherie
Happy weekend everyone!
Cherie
Kidney Chronicles: 2008
Happy New Year all,
Looks like we are off to a bit of a rough start this year - not sure if we are moving forward or sideways this week! I had hoped to send an update telling of Bob's very short hospital stay this week after he briefly passed out and conked his head on a sidewalk Tuesday. However, nothing is brief with him or USCF, and as of this morning he is still a resident on the 10th floor, as his doctors continue to do tests to find out what happened. It was pretty certainly heart-related, and depending on the results of today's echocardiogram, he will come home today and return next week for an angiogram for a closer look at things, OR stay in the hospital through the weekend and have the angiogram as soon as Monday. They need to determine if there is some blood flow obstruction to a new area of his heart, and if so, if it can be repaired via angioplasty or something similar.
In the bigger picture, this could speed things along for the kidney transplant, if the problem is correctable and the kidney transplant team agrees with moving along quickly to do the transplant before the heart has more problems - or stop the transplant plan completely. "Donor Dave" ( thanks, Kelly D) just finished up nearly all his tests on Thursday this week, and just needs one final visit to UCSF. Bob has just a couple more chores on his "to-do" list for the transplant, so this new development is really not welcome!
Needless to say, he is very unhappy with his current situation.....looking on the potentially bright side is not his strength, as we all know. So feel free to call him, at 415-514-5273. If he doesn't answer, he's off to a test, but otherwise he will be lounging around being grumpy. I have spent most of each afternoon and evening with him since Tuesday, but am trying to catch up with home and business a bit this morning.
I still hope that 2008 is the year for good things to happen, so please join me in positive thoughts that this situation will speed the transplant process along!
Cherie
p.s. Bob's head is fine from the fall!
Looks like we are off to a bit of a rough start this year - not sure if we are moving forward or sideways this week! I had hoped to send an update telling of Bob's very short hospital stay this week after he briefly passed out and conked his head on a sidewalk Tuesday. However, nothing is brief with him or USCF, and as of this morning he is still a resident on the 10th floor, as his doctors continue to do tests to find out what happened. It was pretty certainly heart-related, and depending on the results of today's echocardiogram, he will come home today and return next week for an angiogram for a closer look at things, OR stay in the hospital through the weekend and have the angiogram as soon as Monday. They need to determine if there is some blood flow obstruction to a new area of his heart, and if so, if it can be repaired via angioplasty or something similar.
In the bigger picture, this could speed things along for the kidney transplant, if the problem is correctable and the kidney transplant team agrees with moving along quickly to do the transplant before the heart has more problems - or stop the transplant plan completely. "Donor Dave" ( thanks, Kelly D) just finished up nearly all his tests on Thursday this week, and just needs one final visit to UCSF. Bob has just a couple more chores on his "to-do" list for the transplant, so this new development is really not welcome!
Needless to say, he is very unhappy with his current situation.....looking on the potentially bright side is not his strength, as we all know. So feel free to call him, at 415-514-5273. If he doesn't answer, he's off to a test, but otherwise he will be lounging around being grumpy. I have spent most of each afternoon and evening with him since Tuesday, but am trying to catch up with home and business a bit this morning.
I still hope that 2008 is the year for good things to happen, so please join me in positive thoughts that this situation will speed the transplant process along!
Cherie
p.s. Bob's head is fine from the fall!
Sunday, December 16, 2007
Kidney Chronicles: Continued
Hello dear friends and family,
It's been about 2 months since our last report - as always, I expect to have more news in another day or so, but of course that does not happen! Bob continues to do fairly well on dialysis, although there have been some ups and downs with his blood pressure, fluid levels and blood sugars that keep us entertained. The kidney transplant team at UCSF is still hesitant to move forward to a final OK, despite assurances from the heart transplant group that he will benefit tremendously from a new kidney. We were told this week that he is certainly at moderate risk for the surgery - better than high risk - but that a transplant sooner would be much more successful than later, since his heart is about as good as it can be at this point. All the additional tests that have been done have had acceptable results, so Dr. Rame' of the heart transplant team plans another visit to the kidney transplant committee to again make the case for Bob's acceptance for surgery. In the meantime, my brother "donor Dave" has a few more tests to repeat from last year, and will do those after he returns from Peru at the end of this month.
In spite of all this drama, we are starting to dare to hope that this coming year will bring good news and a new start. And we did get one medical project accomplished: both his eyes have had successful cataract surgery, and in about 3 more weeks he'll get new glasses and be able to drive again! The better vision has already improved his spirits. Life will be nearly perfect when racing resumes and he can enjoy every detail on the tv screen!
Keep the good thoughts and wishes coming - we appreciate all your support more than you can imagine. Happy Holidays to all -
Cherie and Bob ( aka Irving aka RJ)
It's been about 2 months since our last report - as always, I expect to have more news in another day or so, but of course that does not happen! Bob continues to do fairly well on dialysis, although there have been some ups and downs with his blood pressure, fluid levels and blood sugars that keep us entertained. The kidney transplant team at UCSF is still hesitant to move forward to a final OK, despite assurances from the heart transplant group that he will benefit tremendously from a new kidney. We were told this week that he is certainly at moderate risk for the surgery - better than high risk - but that a transplant sooner would be much more successful than later, since his heart is about as good as it can be at this point. All the additional tests that have been done have had acceptable results, so Dr. Rame' of the heart transplant team plans another visit to the kidney transplant committee to again make the case for Bob's acceptance for surgery. In the meantime, my brother "donor Dave" has a few more tests to repeat from last year, and will do those after he returns from Peru at the end of this month.
In spite of all this drama, we are starting to dare to hope that this coming year will bring good news and a new start. And we did get one medical project accomplished: both his eyes have had successful cataract surgery, and in about 3 more weeks he'll get new glasses and be able to drive again! The better vision has already improved his spirits. Life will be nearly perfect when racing resumes and he can enjoy every detail on the tv screen!
Keep the good thoughts and wishes coming - we appreciate all your support more than you can imagine. Happy Holidays to all -
Cherie and Bob ( aka Irving aka RJ)
Tuesday, October 16, 2007
Kidney Chronicles: Special Edition!
Greetings friends and family,
Good news on the transplant front! A big step forward at last: Dave and Bob's blood and tissue compatability test results came back yesterday, and they are still a good match, so we get to move forward on the kidney transplant plans from the donation aspect. The team of surgeons on the kidney transplant team are still not in total agreement that they want to risk the kidney transplant because of Bob's cardiac issues, but his UCSF cardiologist, Dr. Rame, is convinced that it's the best overall plan, and is already working with them to make that happen. Of course Dave and Janice have a trip to Machu Picchu ( Peru) planned for December, and we agree that Dave should make that very adventurous trip with both of his kidneys!
And another major accomplishment has been made: Bob did a great job on Sunday walking Leslie down the aisle for her wedding to Chris Chaw, as well as making a wonderful fatherly toast, dancing, and socializing all weekend. Today we return to our more normal lives, where he can catch up on his sleep and resume the rounds of medical appointments, dialysis, and cardiac rehab. We are so lucky that he felt well enough to really enjoy this most special week in our lives! I hope you are able to enjoy the attached photo - courtesy of the Chaw family!
Thanks as always for all your love and support. That's a huge part of Bob's successes so far, and will continue to be.
Love,
Cherie / Cheryl
Good news on the transplant front! A big step forward at last: Dave and Bob's blood and tissue compatability test results came back yesterday, and they are still a good match, so we get to move forward on the kidney transplant plans from the donation aspect. The team of surgeons on the kidney transplant team are still not in total agreement that they want to risk the kidney transplant because of Bob's cardiac issues, but his UCSF cardiologist, Dr. Rame, is convinced that it's the best overall plan, and is already working with them to make that happen. Of course Dave and Janice have a trip to Machu Picchu ( Peru) planned for December, and we agree that Dave should make that very adventurous trip with both of his kidneys!
And another major accomplishment has been made: Bob did a great job on Sunday walking Leslie down the aisle for her wedding to Chris Chaw, as well as making a wonderful fatherly toast, dancing, and socializing all weekend. Today we return to our more normal lives, where he can catch up on his sleep and resume the rounds of medical appointments, dialysis, and cardiac rehab. We are so lucky that he felt well enough to really enjoy this most special week in our lives! I hope you are able to enjoy the attached photo - courtesy of the Chaw family!
Thanks as always for all your love and support. That's a huge part of Bob's successes so far, and will continue to be.
Love,
Cherie / Cheryl
Monday, September 10, 2007
Transplant Tribune: U-Turn Ahead?
Greetings one and all,
It's a new month, and new information is coming our way to keep our minds boggled! After weeks of being "this close" to Bob/Irv getting on that heart-kidney transplant list, we finally got to hear what's been going on in the weekly listing meetings at UCSF. Dr. Rame' met with us last Thursday and (no big surprise) told us that there were differing opinions on the long-term benefits of a heart transplant for Bob, due to his diabetes. So Dr. Rame' has been busy contacting other transplant centers across the country to try and gather more statistics on success rates for diabetics receiving heart-kidney transplants. This procedure is still so new that there are few numbers to rely on. New information received this past few months has made the team less inclined to include the heart in the transplant plans.
However, the very good news is that the most recent test results from Bob's right heart catheterization and echo-cardiogram show that his heart function is much improved over the results earlier this year. So - the heart transplant team is working with the kidney transplant team to see if Bob can go back to just getting a kidney, since it seems that his heart can now withstand that surgery. Not only are we somewhat in shock over this, imagine my brother Dave's surprise to be asked if his kidney is still available to be donated! Lots of discussions and decision-making are in the works again, both within our families, the transplant departments, and between the insurance people and the hospital.
In the meantime, Bob did have outpatient surgery this past Tuesday to create the fistula access for dialysis, using synthetic materials this time. The surgery went well, but he's got a very sore arm again and the anesthesia is not leaving his system too quickly, so he's a bit fuzzy around the edges still.
Not sure what we will do for entertainment once this transplant business is past ( if it ever is) but we do look forward to some kind of sanity one of these days! Stay tuned for a possible return to the Kidney Chronicles in the near future!
Hopefully,
Cherie / Mom/ Cheryl / Irving / Bob / RJ / Bobby
It's a new month, and new information is coming our way to keep our minds boggled! After weeks of being "this close" to Bob/Irv getting on that heart-kidney transplant list, we finally got to hear what's been going on in the weekly listing meetings at UCSF. Dr. Rame' met with us last Thursday and (no big surprise) told us that there were differing opinions on the long-term benefits of a heart transplant for Bob, due to his diabetes. So Dr. Rame' has been busy contacting other transplant centers across the country to try and gather more statistics on success rates for diabetics receiving heart-kidney transplants. This procedure is still so new that there are few numbers to rely on. New information received this past few months has made the team less inclined to include the heart in the transplant plans.
However, the very good news is that the most recent test results from Bob's right heart catheterization and echo-cardiogram show that his heart function is much improved over the results earlier this year. So - the heart transplant team is working with the kidney transplant team to see if Bob can go back to just getting a kidney, since it seems that his heart can now withstand that surgery. Not only are we somewhat in shock over this, imagine my brother Dave's surprise to be asked if his kidney is still available to be donated! Lots of discussions and decision-making are in the works again, both within our families, the transplant departments, and between the insurance people and the hospital.
In the meantime, Bob did have outpatient surgery this past Tuesday to create the fistula access for dialysis, using synthetic materials this time. The surgery went well, but he's got a very sore arm again and the anesthesia is not leaving his system too quickly, so he's a bit fuzzy around the edges still.
Not sure what we will do for entertainment once this transplant business is past ( if it ever is) but we do look forward to some kind of sanity one of these days! Stay tuned for a possible return to the Kidney Chronicles in the near future!
Hopefully,
Cherie / Mom/ Cheryl / Irving / Bob / RJ / Bobby
Thursday, August 23, 2007
Transplant Tribune: Holding Steady
Well, many of you are wondering what is going on with the infamous Robert J Moss at this point in the summer. The answer is: not much, but at least what news we have is mostly positive. We were hoping to have some definite news about The List by now, but we are still just creeping along, faithfully going to his assigned appointments . Here's the latest, in a nutshell:
We have heard nothing but rave reviews about Dr. Hoopes' surgical skills - just hope RJ gets the chance to experience such expertise sometime! ( His communication and "people" skills are widely known to be zip).
Last week the vascular surgeon tested the circulation on his right leg, and it's still very good since the bypass last spring.
A right heart catheterization ( also last week) showed very good pulmonary pressures this time around.
Dr. Rame', the original UCSF cardiologist who "invited" us into this transplant program wants to see Bob again, but first he needs to have another Echo Cardiogram.(sigh)
A bit of an obstacle is the fistula in his right arm, created in a surgical procedure in May to provide better access for dialysis. It has not developed correctly, which sometimes happens, so unfortunately that procedure needs to be re-done next week, this time with an artificial vein graft instead of using his own vein. I hear Gortex is the miracle fabric to be used. It's likely that the recovery time from this little deal will delay being listed again, of course.
Finally, we have been assigned a case manager from the finance dept. at UCSF, so that is a serious step forward: they are making sure we know all the fine print about that side of the project, along with helping get Medicare lined up to supplement Bob's insurance. This may be a bigger step forward than all the medical stuff!
We have mellowed a bit and are not calling UCSF daily for updates.......figured we should enjoy his relative good health and mobility right now, and take things in stride. With all the appointments coming our way, we know he is not forgotten!
Thanks as always for your support and good wishes. So nice to know we have a huge network of friends and relatives cheering him on!
With love from both of us,
Cherie / Cheryl
We have heard nothing but rave reviews about Dr. Hoopes' surgical skills - just hope RJ gets the chance to experience such expertise sometime! ( His communication and "people" skills are widely known to be zip).
Last week the vascular surgeon tested the circulation on his right leg, and it's still very good since the bypass last spring.
A right heart catheterization ( also last week) showed very good pulmonary pressures this time around.
Dr. Rame', the original UCSF cardiologist who "invited" us into this transplant program wants to see Bob again, but first he needs to have another Echo Cardiogram.(sigh)
A bit of an obstacle is the fistula in his right arm, created in a surgical procedure in May to provide better access for dialysis. It has not developed correctly, which sometimes happens, so unfortunately that procedure needs to be re-done next week, this time with an artificial vein graft instead of using his own vein. I hear Gortex is the miracle fabric to be used. It's likely that the recovery time from this little deal will delay being listed again, of course.
Finally, we have been assigned a case manager from the finance dept. at UCSF, so that is a serious step forward: they are making sure we know all the fine print about that side of the project, along with helping get Medicare lined up to supplement Bob's insurance. This may be a bigger step forward than all the medical stuff!
We have mellowed a bit and are not calling UCSF daily for updates.......figured we should enjoy his relative good health and mobility right now, and take things in stride. With all the appointments coming our way, we know he is not forgotten!
Thanks as always for your support and good wishes. So nice to know we have a huge network of friends and relatives cheering him on!
With love from both of us,
Cherie / Cheryl
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