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)
Sunday, December 16, 2007
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
Saturday, July 7, 2007
Transplant Tribune... Getting Closer
Well, we are finally creeping a bit closer to getting Bob aka Irving on The List at last! Last Thursday we finally met with Dr. Hoopes, only to have him ask why we were there! Quite a letdown, to say the least. Whether it's politics, miscommunications, memory lapses, etc, that appointment was not a highlight in this long journey.
However, this week the heart tranplant committee finally made the big decision that Bob can be added to The List, as soon as they check one more time to get the very important blessing of his health insurance carrier. (We don't expect that to be a problem, but anything is possible at this point).
And then there are a few other strings attached, naturally: he will need to have a right heart catheterization every three months to keep track of his pulmonary pressures, avoid having any new incidents of artery blockages in his legs, and generally stay in as good a shape as possible.
The good news / bad news part of The List is that he is too healthy to be listed as a priority, so will be in category 2, which means a very long wait for organs. To be moved into a 1A or 1B priority, he would need to be ill enough to require hospitalization with IV medications keeping him going, or on a ventricular assist device VAD), a battery-operated machine that helps keep the heart pumping. Of course neither of these options is something we want, but on the other hand the national guidelines of the organ transplant network are the deciding factor. These guidelines were touched on many months ago when we started this process, but did not really register with us. So we need to keep working on improving our patience and optimism, and try to balance the waiting with enjoying life each day. Getting Bob / Irv's depression reduced further would be a huge positive step, but that continues to be a struggle for him.
I hope to be able to send news of being listed in the next Tribune. Until then, keep the good thoughts, jokes, visits, cards and calls coming - he appreciates them all. If anyone is so lucky to get an email from Bob, that will be a miracle! (I do share your emails with him, of course).
With hope and thanks,
Cherie / Cheryl
However, this week the heart tranplant committee finally made the big decision that Bob can be added to The List, as soon as they check one more time to get the very important blessing of his health insurance carrier. (We don't expect that to be a problem, but anything is possible at this point).
And then there are a few other strings attached, naturally: he will need to have a right heart catheterization every three months to keep track of his pulmonary pressures, avoid having any new incidents of artery blockages in his legs, and generally stay in as good a shape as possible.
The good news / bad news part of The List is that he is too healthy to be listed as a priority, so will be in category 2, which means a very long wait for organs. To be moved into a 1A or 1B priority, he would need to be ill enough to require hospitalization with IV medications keeping him going, or on a ventricular assist device VAD), a battery-operated machine that helps keep the heart pumping. Of course neither of these options is something we want, but on the other hand the national guidelines of the organ transplant network are the deciding factor. These guidelines were touched on many months ago when we started this process, but did not really register with us. So we need to keep working on improving our patience and optimism, and try to balance the waiting with enjoying life each day. Getting Bob / Irv's depression reduced further would be a huge positive step, but that continues to be a struggle for him.
I hope to be able to send news of being listed in the next Tribune. Until then, keep the good thoughts, jokes, visits, cards and calls coming - he appreciates them all. If anyone is so lucky to get an email from Bob, that will be a miracle! (I do share your emails with him, of course).
With hope and thanks,
Cherie / Cheryl
Saturday, April 14, 2007
Transplant Tribune: Weekend Update
Dear friends and family,
I'm very happy to report that Bob / Irv had successful surgery yesterday on his right leg - one of his right leg veins was put in place to bypass the blocked artery behind his right knee, and the circulation is vastly improved. I was very glad to have Gary and Terre hang out with me in the waiting room as we waited for news from the OR. It was very dicey to do major surgery so soon after his heart attack from last weekend, and we are extremely relieved that he came through just fine. He is a tough guy to go through all this- considering that he gets faint at the idea of a splinter!
He is still in ICU today, and will be back in a regular room on the 10th floor by this evening or tomorrow. We were told he will be kept at UCSF for 5 - 7 days before heading home. I'll let you all know when he has access to his cell phone again.......for a few days, anyway, he will be dealing with recovery from the surgery, and getting medication for the pain, so is not be too social at the moment. I will see him this afternoon, along with Andy and Linsey, and will be glad to update anyone who calls me. My cell is 925-548-9168. Reception is poor in most of the hospital, but I will of course be checking messages outside when I take my fresh air breaks.
Hopefully this successful surgery gets us one step closer to being on the actual transplant list. Doctors are making no guarantees, of course, but we're moving in the right direction.
We know that everyone's support, cheers, prayers and love is making a difference, and so appreciate each and every one of you. His odds would be much worse without this network of support.
Have a great weekend,
Until the next report,
Cherie / Cheryl
I'm very happy to report that Bob / Irv had successful surgery yesterday on his right leg - one of his right leg veins was put in place to bypass the blocked artery behind his right knee, and the circulation is vastly improved. I was very glad to have Gary and Terre hang out with me in the waiting room as we waited for news from the OR. It was very dicey to do major surgery so soon after his heart attack from last weekend, and we are extremely relieved that he came through just fine. He is a tough guy to go through all this- considering that he gets faint at the idea of a splinter!
He is still in ICU today, and will be back in a regular room on the 10th floor by this evening or tomorrow. We were told he will be kept at UCSF for 5 - 7 days before heading home. I'll let you all know when he has access to his cell phone again.......for a few days, anyway, he will be dealing with recovery from the surgery, and getting medication for the pain, so is not be too social at the moment. I will see him this afternoon, along with Andy and Linsey, and will be glad to update anyone who calls me. My cell is 925-548-9168. Reception is poor in most of the hospital, but I will of course be checking messages outside when I take my fresh air breaks.
Hopefully this successful surgery gets us one step closer to being on the actual transplant list. Doctors are making no guarantees, of course, but we're moving in the right direction.
We know that everyone's support, cheers, prayers and love is making a difference, and so appreciate each and every one of you. His odds would be much worse without this network of support.
Have a great weekend,
Until the next report,
Cherie / Cheryl
Wednesday, April 11, 2007
Transplant Tribune: The Rocky Road Continues
Hi again - my report from last Saturday evening is already obsolete. That lovely evening at home was fleeting - Bob/Irving had a mild heart attack during the night, and we found ourselves checking into the ER at local Valley Care Hospital early the next morning. They got him stabilized and kept him until Monday. Since we didn't want any treatment that might conflict with UCSF's agenda, they released him Monday evening after his dinner. We were home an entire half hour when a cardiologist from UCSF called us and requested that I bring him directly to them. Luckily Leslie was with us and kept us from really losing it at that point!
So - he's back in their custody still. He got both his heart and his right leg checked out yesterday, and thankfully there is no new damage from that heart attack over the weekend. Now the plan is to find some decent veins in his legs and try bypass surgery on the right leg Friday if at all possible. He had an ultrasound today with the purpose of searching out those veins, and of course we are anxiously waiting for some positive news.
I took today to stay at home to catch up on work, plus try and regain a bit of sanity ( not to mention sleep), but am heading his way shortly to spend the evening with him. Looks like he will be there for a few more days, especially if there is an operation on Friday. He has his cell phone with him, and his direct line to room 1034 is 415-353-8214. He seems to be sleeping well at night, so I figure he's fair game for phone calls during the day, if anyone wants to give him a short call.If he doesn't answer, you'll know he's not in the mood, or out having more tests done.
I will look forward to sending a more positive report next time - your good wishes and crossed fingers are comforting, for sure.
Hoping for a smooth patch of road soon, Cherie / Cheryl
So - he's back in their custody still. He got both his heart and his right leg checked out yesterday, and thankfully there is no new damage from that heart attack over the weekend. Now the plan is to find some decent veins in his legs and try bypass surgery on the right leg Friday if at all possible. He had an ultrasound today with the purpose of searching out those veins, and of course we are anxiously waiting for some positive news.
I took today to stay at home to catch up on work, plus try and regain a bit of sanity ( not to mention sleep), but am heading his way shortly to spend the evening with him. Looks like he will be there for a few more days, especially if there is an operation on Friday. He has his cell phone with him, and his direct line to room 1034 is 415-353-8214. He seems to be sleeping well at night, so I figure he's fair game for phone calls during the day, if anyone wants to give him a short call.If he doesn't answer, you'll know he's not in the mood, or out having more tests done.
I will look forward to sending a more positive report next time - your good wishes and crossed fingers are comforting, for sure.
Hoping for a smooth patch of road soon, Cherie / Cheryl
Sunday, February 11, 2007
Transplant Tribune: Update
Dear friends and family,
Bob/Irving delegated this edition to me - he's happily tuned into watching the beginning of the racing season in Daytona and does not want any other distractions! So we know he is feeling better now that the Season has begun.
His cardiologist at UCSF and nephrologist from John Muir have agreed that he needs to start on dialysis, even though his kidneys are still working a bit. They want him to get rid of all the extra fluid he's carrying, to help reduce his pulmonary and cardiac pressures. So, moving right along, he will check into John Muir Hospital early Tuesday morning, and have an access tube installed. Sounds like they will put him through one or more treatments of dialysis before sending him home. After that he will go to a local center one to three times per week to continue the treatments, depending on how he does. By March 6 the cardiologist hopes to see definite improvement when he repeats the right heart angiogram.Then
maybe he will get onto the transplant waiting list at last, but we know now not to assume anything!
As always, he enjoys hearing from everyone, even though he is not often taking the initiative in making contact......contrary to some opinions, he does not have a broken finger! Thanks for all your positive thoughts, prayers and support. We know it's making a difference!
Cherie
Bob/Irving delegated this edition to me - he's happily tuned into watching the beginning of the racing season in Daytona and does not want any other distractions! So we know he is feeling better now that the Season has begun.
His cardiologist at UCSF and nephrologist from John Muir have agreed that he needs to start on dialysis, even though his kidneys are still working a bit. They want him to get rid of all the extra fluid he's carrying, to help reduce his pulmonary and cardiac pressures. So, moving right along, he will check into John Muir Hospital early Tuesday morning, and have an access tube installed. Sounds like they will put him through one or more treatments of dialysis before sending him home. After that he will go to a local center one to three times per week to continue the treatments, depending on how he does. By March 6 the cardiologist hopes to see definite improvement when he repeats the right heart angiogram.Then
maybe he will get onto the transplant waiting list at last, but we know now not to assume anything!
As always, he enjoys hearing from everyone, even though he is not often taking the initiative in making contact......contrary to some opinions, he does not have a broken finger! Thanks for all your positive thoughts, prayers and support. We know it's making a difference!
Cherie
Saturday, January 27, 2007
Transplant Tribune: Recent Updates
Dear friends and family, here's Bob/Irving's latest update. We are racking up the miles to UCSF, and in spite of all the detours in the transplant plan, feel hopeful that it will happen when the time is right! The team there is very attentive and supportive, and keeping a close eye on blood pressure, fluid retention, diet, attitude and all that keeps these things in order.
And now from the main man:
Greetings everyone,
My right heart cath indicated high pulmonary pressure which eliminates placement on the transplant list at this time. The course now is to treat this condition with medications and recheck in early March, with another right heart catheterization. Dialysis has been strongly suggested within the next coupla of months to ease this pressure by getting rid of excess fluid as well. Not my favorite course at this time but my kidneys will not get any better either although for now they are still functioning. The doc thinks dialysis would help both my kidneys and my heart, so we'll see what the verdict is and go along with it.
One plus in this is I have an excellent cardiologist at UCSF who seems to be very focused on my situation - he is proactively working to get me listed, in spite of the transplant surgeon's less rosy prognosis: he suggested that Dave stay available to give his kidney, and then we wait for a heart in a second operation, in spite of the cardiologist's feeling that my heart would not do well during a kidney transplant. Bottom line, nothing is definite, but we are inching forward still.
And now from the main man:
Greetings everyone,
My right heart cath indicated high pulmonary pressure which eliminates placement on the transplant list at this time. The course now is to treat this condition with medications and recheck in early March, with another right heart catheterization. Dialysis has been strongly suggested within the next coupla of months to ease this pressure by getting rid of excess fluid as well. Not my favorite course at this time but my kidneys will not get any better either although for now they are still functioning. The doc thinks dialysis would help both my kidneys and my heart, so we'll see what the verdict is and go along with it.
One plus in this is I have an excellent cardiologist at UCSF who seems to be very focused on my situation - he is proactively working to get me listed, in spite of the transplant surgeon's less rosy prognosis: he suggested that Dave stay available to give his kidney, and then we wait for a heart in a second operation, in spite of the cardiologist's feeling that my heart would not do well during a kidney transplant. Bottom line, nothing is definite, but we are inching forward still.
Subscribe to:
Posts (Atom)