By now, many of you have learned about the death of my husband, Dennis. For those who haven't, he passed away on Thursday, February 12th, at the UCSF Medical Center. The infection that had ravaged his body for so many months finally took such a hold that it could not be stopped and, realizing this, Dennis chose to end his fight against it. It was a characteristically brave and dignified ending to an amazing life.
It has taken me this long to compose myself enough to write this. The level of devastation has been unimaginable - nothing I have read or heard could have prepared me for the moment when he took his last breath. Often, in cases of lengthy illness, the event is seen as a relief, of sorts. I've experienced that feeling before with the deaths of my grandmother, my brother, my nephew, and finally my father, all of whom lingered through long, painful periods of decline before finally being released from the illnesses that dictated their lives for so long. Those of us left behind grieved for them and mourned our loss, but still knew deep down that our loved ones were no longer suffering, no longer in pain. That knowledge somehow softened our pain and kept us moving forward. Perhaps this should be how I view Dennis's death, but I cannot.
At the same time, I am filled with almost overwhelming gratitude for the brief time we shared and the final weeks we were given to reaffirm our feelings for each other. I know, without any doubt, that I was truly and completely loved. How many of us are fortunate enough not only to experience that, but to hear it from that very special person, before it's too late? On his last day, I told Dennis that I would not hesitate to do it all over again - the pain, the hospitals, the care-giving - and I meant it. No level of hardship could ever eclipse the joy of having him in my life. To say that I am a better person just for having known him is such an understatement. Rather, I have become the person I was meant to be because of him, and for that alone I will always be truly grateful.
Tuesday, February 17, 2009
Wednesday, February 4, 2009
I Lef)t My Heart (and my sanity) in San Francisco...
We're well into week two here at UCSF. The weather has been unseasonably perfect - not too cold, sunny and clear - the accomodations (for me, at least) have been great, and the progress has been slow and steady.
Dennis should be going home very soon. The infection that has plagued him now seems to be retreating. Doctors are still confident that they'll be able to get Dennis through this and list him for the transplant, but the plans keep changing and becoming more complicated.
Turns out that mild heart attack was the result of a 90% blockage and an aneurysm in the same artery. The transplant surgeons are thinking that they can have a heart surgeon come in during the transplant to do a bypass. Wow. All this, of course, has to be presented to the committee, which meets today. We've been busy making sure that those doctors presenting the case know that Dennis is ready and willing...it's not like we have any alternatives. It's interesting to me that the outlook of the UCSF doctors is so different from the Davis docs who seemed to be intimidated by all the complications. Here, they're looked at as challenges, not brick walls. What's that line you always hear from motivational types - there are no challenges, only solutions?
Dennis should be going home very soon. The infection that has plagued him now seems to be retreating. Doctors are still confident that they'll be able to get Dennis through this and list him for the transplant, but the plans keep changing and becoming more complicated.
Turns out that mild heart attack was the result of a 90% blockage and an aneurysm in the same artery. The transplant surgeons are thinking that they can have a heart surgeon come in during the transplant to do a bypass. Wow. All this, of course, has to be presented to the committee, which meets today. We've been busy making sure that those doctors presenting the case know that Dennis is ready and willing...it's not like we have any alternatives. It's interesting to me that the outlook of the UCSF doctors is so different from the Davis docs who seemed to be intimidated by all the complications. Here, they're looked at as challenges, not brick walls. What's that line you always hear from motivational types - there are no challenges, only solutions?
Saturday, January 24, 2009
Road Trip!
Dennis and I have been wanting to get away for a long time, but this really isn't what we had in mind. Sometime today, Dennis will be transferred from the UCD Med Center to the UCSF Hospital. We have no idea how long he'll be there, or how we're going to deal with this whole "living in Sacramento whilst traveling to SF regularly" thing, but we'll cross that (Bay) Bridge when we come to it. At least I know I have a place to stay if I need it - thanks, Becky & Kelly!
The reason for all this didn't really become clear to me until an ah-ha moment on Thursday. I just couldn't understand why the surgeons continued their reluctance to perform the abscess surgery. Yeah, it's risky - duh. But he's been cleared (twice) by Cardiology. He sailed through the angiogram with zero complications. Why the hesitation? Then, that 40 watt bulb over my head came on. All this is about getting him healthy enough to be listed for the transplant, right? So, if UCD doesn't have a Transplant Program, why spend the money and resources on the abscess surgery? While no one has actually come out and said that's what's happening, they haven't denied it, either. In fact, I've had a couple of doctors just look at me as if to say, "Well, yeah, but that sounds bad so we won't admit it". They will say, though, that this is our last chance. If UCSF won't do it, no one will. If no one will, we land in a gray area where no one knows what will happen next. Dennis says he'll heal himself if he has to - he's just the kind of guy who could pull it off, too. (I keep teasing him about finding some extra-strength Kinoki Foot Pads...) We're pretty optimistic, though, that it will never come down to the foot pads. UCSF is a progressive place, and it may actually be in our favor that they don't know us and haven't developed any emotional connection. At this point, we'd much rather have them lay it on the line and make some decisions than be too considerate of our feelings!
So, we prepare for the unknown. I haven't set foot in UCSF's hospital in 25 years, and I'm sure it's changed dramatically since then. As familiar as we are with the staff and overall operation of UCD, we are that unfamiliar with UCSF - no favorite nurses, no familiar faces in the hallway, no favorite parking spot in the garage. The whole thing makes me even more sympathetic to the patients of the Transplant Program who are being forced to make this same journey on their own, without the assistance of the hospital-to-hospital transfer process. Which reminds me, have you joined Facebook and my "Save the UC Davis Liver Transplant Program" yet?
The reason for all this didn't really become clear to me until an ah-ha moment on Thursday. I just couldn't understand why the surgeons continued their reluctance to perform the abscess surgery. Yeah, it's risky - duh. But he's been cleared (twice) by Cardiology. He sailed through the angiogram with zero complications. Why the hesitation? Then, that 40 watt bulb over my head came on. All this is about getting him healthy enough to be listed for the transplant, right? So, if UCD doesn't have a Transplant Program, why spend the money and resources on the abscess surgery? While no one has actually come out and said that's what's happening, they haven't denied it, either. In fact, I've had a couple of doctors just look at me as if to say, "Well, yeah, but that sounds bad so we won't admit it". They will say, though, that this is our last chance. If UCSF won't do it, no one will. If no one will, we land in a gray area where no one knows what will happen next. Dennis says he'll heal himself if he has to - he's just the kind of guy who could pull it off, too. (I keep teasing him about finding some extra-strength Kinoki Foot Pads...) We're pretty optimistic, though, that it will never come down to the foot pads. UCSF is a progressive place, and it may actually be in our favor that they don't know us and haven't developed any emotional connection. At this point, we'd much rather have them lay it on the line and make some decisions than be too considerate of our feelings!
So, we prepare for the unknown. I haven't set foot in UCSF's hospital in 25 years, and I'm sure it's changed dramatically since then. As familiar as we are with the staff and overall operation of UCD, we are that unfamiliar with UCSF - no favorite nurses, no familiar faces in the hallway, no favorite parking spot in the garage. The whole thing makes me even more sympathetic to the patients of the Transplant Program who are being forced to make this same journey on their own, without the assistance of the hospital-to-hospital transfer process. Which reminds me, have you joined Facebook and my "Save the UC Davis Liver Transplant Program" yet?
Sunday, January 18, 2009
One Step Forward...you know the rest
Wish I could say we've made more progress. One week ago, Dennis suffered a mild heart attack and was eventually transferred to the Cardiac ICU for closer observation. After several days in the ICU and some adjustments to his medications, he's now back out on the regular floor and doing well without any further complications.
What this means, unfortunately, is that he is no longer a transplant candidate - at least not for the time being. Cardiology has scheduled an Angiogram - one of those diagnostic tests that will give them an idea of how much (if any) damage was done to his heart. If the damage is slight as expected, the abscess surgery will go on as planned, he'll recover from the infection and we'll get back into the transplant system. The test will take place on Tuesday and I will do my best to update here as soon as we learn the outcome.
The crusade, of course, continues. I've heard back from Mayor Kevin Johnson's Chief of Staff, who assures me that Mayor Johnson will see my e-mail and help if possible. I've started a group on Facebook.com, Save The UC Davis Liver Transplant Program. With the help of friends & family, we're 28 members strong and growing - if you're on Facebook, I hope you'll join us.
Meanwhile, I have a new name for you: Ann Madden Rice. Ms. Rice (she's not hyphenated) is the CEO of the UCD Med Center. According to their website, she's a "nationally recognized expert in the management of health-care institutions". That would explain her salary of $584,300 annually, I suppose. I'll be sure to ask her about that when I write to her! I'll also ask how it is that a $45 million dollar profit last year translates to closing life-saving programs today, and what she did to deserve a $79,000 bonus last year when UCDMC must be broke, right? Feel free to join me in asking Ms. Rice what the hell they were thinking at that board meeting. Same address on Stockton Blvd., sadly, no direct e-mail address.
What this means, unfortunately, is that he is no longer a transplant candidate - at least not for the time being. Cardiology has scheduled an Angiogram - one of those diagnostic tests that will give them an idea of how much (if any) damage was done to his heart. If the damage is slight as expected, the abscess surgery will go on as planned, he'll recover from the infection and we'll get back into the transplant system. The test will take place on Tuesday and I will do my best to update here as soon as we learn the outcome.
The crusade, of course, continues. I've heard back from Mayor Kevin Johnson's Chief of Staff, who assures me that Mayor Johnson will see my e-mail and help if possible. I've started a group on Facebook.com, Save The UC Davis Liver Transplant Program. With the help of friends & family, we're 28 members strong and growing - if you're on Facebook, I hope you'll join us.
Meanwhile, I have a new name for you: Ann Madden Rice. Ms. Rice (she's not hyphenated) is the CEO of the UCD Med Center. According to their website, she's a "nationally recognized expert in the management of health-care institutions". That would explain her salary of $584,300 annually, I suppose. I'll be sure to ask her about that when I write to her! I'll also ask how it is that a $45 million dollar profit last year translates to closing life-saving programs today, and what she did to deserve a $79,000 bonus last year when UCDMC must be broke, right? Feel free to join me in asking Ms. Rice what the hell they were thinking at that board meeting. Same address on Stockton Blvd., sadly, no direct e-mail address.
Saturday, January 10, 2009
Activism Update - We're Not Done Yet
Sigh...where to begin...
Let's start by saying that your letters/e-mails have not gone unnoticed. Dennis and I met with Dr. McVicar (the poor guy I asked you to bombard with correspondence) yesterday. I had spoken to the Transplant Coordinator earlier in the week. She assured me that Dr. McVicar was about to add Dennis to the list, needing only to see him in person before making it official.
All this would have made me the happiest woman on the planet, if it had gone as planned. Late last week, Dennis's infection came back. Instead of adding him to the wait list, Dr. McVicar admitted him to the hospital, where he will remain for a while, probably a couple of weeks, at least. Since antibiotics and drain tubes haven't done the job, there is only one alternative treatment for the infection, and that's surgery. It is extremely risky - this is the procedure they wanted to do a few months ago but didn't dare to because Dennis is so fragile. He's no less fragile now, but they keep reminding me that there are simply no other alternatives.
Meanwhile, we have won a battle in getting Dr. McVicar directly involved in Dennis's case, but we haven't won the war. What about all those other people we can't speak for? In talking to various staff members at the clinic, I've learned that money is the ONLY reason the program was closed. There's not enough profit, so they cut it, plain and simple. Since when should doctors and hospitals care more about making a profit than they care about their patients lives?
Let's start by saying that your letters/e-mails have not gone unnoticed. Dennis and I met with Dr. McVicar (the poor guy I asked you to bombard with correspondence) yesterday. I had spoken to the Transplant Coordinator earlier in the week. She assured me that Dr. McVicar was about to add Dennis to the list, needing only to see him in person before making it official.
All this would have made me the happiest woman on the planet, if it had gone as planned. Late last week, Dennis's infection came back. Instead of adding him to the wait list, Dr. McVicar admitted him to the hospital, where he will remain for a while, probably a couple of weeks, at least. Since antibiotics and drain tubes haven't done the job, there is only one alternative treatment for the infection, and that's surgery. It is extremely risky - this is the procedure they wanted to do a few months ago but didn't dare to because Dennis is so fragile. He's no less fragile now, but they keep reminding me that there are simply no other alternatives.
Meanwhile, we have won a battle in getting Dr. McVicar directly involved in Dennis's case, but we haven't won the war. What about all those other people we can't speak for? In talking to various staff members at the clinic, I've learned that money is the ONLY reason the program was closed. There's not enough profit, so they cut it, plain and simple. Since when should doctors and hospitals care more about making a profit than they care about their patients lives?
Poor Dr. McVicar has probably heard enough from us. I do, however, have the name of the Chief Medical Officer (Allan D. Siefkin). It was his office that made the decision and needs to hear how stupid it was. If anyone reading this has any media connections in the Sacramento area, talk to me. Staffers at the clinic believe that media attention may make the decision-makers rethink what they've done. Pressure, pressure, pressure. I've sent an e-mail to the Chief of Staff for Sacramento's Mayor Kevin Johnson (Mr. Kunal Merchant, e-mail KMerchant@cityofsacramento.org), just for good measure.
The UC Davis Community Advisory Board may also be a good avenue to pursue. http://www.ucdmc.ucdavis.edu/community_relations/board.html. The Chair of the 2008/2009 Board, Karen Vicari, even has her own Facebook page... :)
Have I told you yet how much I appreciate your help? Say a prayer (or whatever you do) for my hubby when you can...
Monday, December 15, 2008
Calling All Activists...and everyone else, too!
On Friday, December 12th, we received a call from the UC Davis Transplant Clinic. After eighteen years, the Liver Tranplant program is being shut down. The reason depends on who you talk to. One person told me it was funding - the economy. In the Sacramento Bee, the excuse was the drop in transplants over the past year, which has an effect on Medi-Care funding and the surgeon's ability to maintain their skills.
Whatever the reason, dozens of patients are being left out in the cold. Each facility has their own set of standards that must be met by the patients before they will be listed for transplant. Regardless of what stage in the process, all of UCD's patients are being told they need to transfer to one of the three remaining centers in Northern California: UCSF, California Pacific Medical Center (San Francisco) and Stanford (Palo Alto). The closest of the three is 76 miles from Sacramento.
Dennis was due to be listed following his next appointment, on December 21st. Another gentleman, interviewed for KXTV 10 News last Friday, would have been listed the same day. It is very likely that they will have to complete the same scans and tests again before being this close to receiving their livers again, if they can survive that long.
Now, here's where the activism comes in. I would like to ask each and every one of you to help me. I want to let the Director of the UC Davis Liver Transplant Program know that these aren't dollars they're cutting, they're lives. These are men and women (and children) who have lived up to their end of the bargain. They've been poked and prodded and tested and scanned, over and over again, even when they were too sick to get out of bed. And for what? Because the easy money made doing boob jobs and face lifts is more important than people's lives?
Sorry, I know I'm ranting and raving, but I get a little bit emotional about this.
So, how about it? If you can write a letter, fantastic. An e-mail? Perfect. The more people who question this closure, the better.
Here's the info:
Whatever the reason, dozens of patients are being left out in the cold. Each facility has their own set of standards that must be met by the patients before they will be listed for transplant. Regardless of what stage in the process, all of UCD's patients are being told they need to transfer to one of the three remaining centers in Northern California: UCSF, California Pacific Medical Center (San Francisco) and Stanford (Palo Alto). The closest of the three is 76 miles from Sacramento.
Dennis was due to be listed following his next appointment, on December 21st. Another gentleman, interviewed for KXTV 10 News last Friday, would have been listed the same day. It is very likely that they will have to complete the same scans and tests again before being this close to receiving their livers again, if they can survive that long.
Now, here's where the activism comes in. I would like to ask each and every one of you to help me. I want to let the Director of the UC Davis Liver Transplant Program know that these aren't dollars they're cutting, they're lives. These are men and women (and children) who have lived up to their end of the bargain. They've been poked and prodded and tested and scanned, over and over again, even when they were too sick to get out of bed. And for what? Because the easy money made doing boob jobs and face lifts is more important than people's lives?
Sorry, I know I'm ranting and raving, but I get a little bit emotional about this.
So, how about it? If you can write a letter, fantastic. An e-mail? Perfect. The more people who question this closure, the better.
Here's the info:
UC Davis Transplant Center
Attn: Dr. John McVicar, Liver Transplant Program Director
2315 Stockton Blvd.
Sacramento, CA 95817
e-mail: transplant@ucdavis.edu
Even if you don't know Dennis, there are at least a dozen or more people waiting for listing that may be helped by your efforts.
Sunday, November 23, 2008
When It Rains, It Pours
If bad news really does travel in threes, it's time I packed up my family and headed to an undisclosed location.
We were hit with a major blow on Friday. Lab results confirmed that Dennis is still carrying around the infection that landed him back in the hospital last month. What does this mean? Lots of things. First, we're back on the grueling routine of antibiotics - dialysis for five hours every other day, then a trip to UCD for another hour. This will go on for several weeks, most likely, depending on how he responds, but there is always the possibility of (ugh) readmission to the hospital for further procedures to find and eliminate the source of this bug that just won't go away.
Of course, this puts our transplant dreams on hold...again. The next appointment, December 22, still stands, and there's always the possibility that he will still be cleared by that date. Still, we aren't holding our collective breath - no point in setting ourselves up for another disappointment. The hardest task now is to keep his spirits up enough to continue this never-ending battle.
Meanwhile, my mom took a fall earlier this week. After resisting my repeated requests to see a doctor, she finally realized things weren't right yesterday. She's now in the ICU at UCD (here we go again) with several fractured ribs and a blood pressure that's off the charts. It's not that serious, really. The ICU is more of a precaution, something they do primarily because of the age of the patient, and I just learned from her nurse that she'll be transferred to the regular floor later today because she's doing so well. No word yet, of course, if she'll be allowed to go home or to a Skilled Nursing Facility, but we'll cross that bridge when we come to it.
I'm starting to wonder what I'm going to do with the 22 lb. turkey that's resting in my refrigerator right now...
We were hit with a major blow on Friday. Lab results confirmed that Dennis is still carrying around the infection that landed him back in the hospital last month. What does this mean? Lots of things. First, we're back on the grueling routine of antibiotics - dialysis for five hours every other day, then a trip to UCD for another hour. This will go on for several weeks, most likely, depending on how he responds, but there is always the possibility of (ugh) readmission to the hospital for further procedures to find and eliminate the source of this bug that just won't go away.
Of course, this puts our transplant dreams on hold...again. The next appointment, December 22, still stands, and there's always the possibility that he will still be cleared by that date. Still, we aren't holding our collective breath - no point in setting ourselves up for another disappointment. The hardest task now is to keep his spirits up enough to continue this never-ending battle.
Meanwhile, my mom took a fall earlier this week. After resisting my repeated requests to see a doctor, she finally realized things weren't right yesterday. She's now in the ICU at UCD (here we go again) with several fractured ribs and a blood pressure that's off the charts. It's not that serious, really. The ICU is more of a precaution, something they do primarily because of the age of the patient, and I just learned from her nurse that she'll be transferred to the regular floor later today because she's doing so well. No word yet, of course, if she'll be allowed to go home or to a Skilled Nursing Facility, but we'll cross that bridge when we come to it.
I'm starting to wonder what I'm going to do with the 22 lb. turkey that's resting in my refrigerator right now...
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