Stephen Bennett Updates

SUNDAY, APRIL 20, 2008 02:31 PM, EDT Hello everyone, It’s been a while and I’m sitting at dialysis with time on my hands and so I thought I’d write a quick update… It’s now a month since my kidneys were removed. That doesn’t seem possible, but it’s true. I continue to get a little stronger each day with the goal of being as healthy as I can be for the upcoming transplant – now less than a month away. Dialysis is not fun but I am managing to deal with it reasonably well, although I am definitely glad it’s a stopgap measure! I generally feel wiped out after 4 hours on the machine and don’t get much of anything else done the rest of the day on Tuesdays, Thursdays and Saturdays. Today the machine I was hooked up to decided to quit about 20 minutes in and I had to wait for a while until another machine was available. I remained hooked up to the first machine while I waited and won’t be out of here today until about 4:30 – so five hours on today. Today is the first day I will have driven myself to and from dialysis, so that’s progress. The most annoying thing the last ten days or so has been my peeling skin. It has been like I had a bad sunburn over nearly my whole body, even strange places like the palms of my hands were peeling like crazy. And my blood pressure hasn’t quite settled down yet, but that will happen. Overall, I feel pretty good and have little to complain about. I have been marginally productive lately. Got into the studio for a session to nearly finish up my vocal cd – Alert the Authorities – which I started back in 2006 and had left more or less on hold for a while. I tossed out a couple of the tracks I had recorded previously and found a couple of tunes to replace them. Actually, I found one and wrote another. I turned the poem I shared here in my last post into a song. There’s very little left to do with this cd now and my aim isto have it sent off to the manufacturer by the beginning of summer. I’ve been playing lots of guitar! And while dialyzing the last week I have been working on my computer polishing up the orchestral arrangements of my Powhatan Suite, written about 5 years ago and released in all guitar form on my Music From Tsenacommacah cd. So that’s very satisfying making some progress on this suite. In fact, it is very nearly complete! One project I will undertake in the next couple of years is take this score into the studio and, using some software I purchased recently, put this on record. The software is actually a library of samples of the Vienna Philharmonic Orchestra. It is a library used for film scores and is quite amazing sounding. So I can’t wait to get in the studio and try this out. And I have all sorts of other musical projects simmering on the back burners too. So don’t worry about me just sitting around on my duff! And I put some plants in the garden yesterday too. That felt good. As always, a big thank you to everyone who has contacted me here or otherwise to express their good wishes – I really appreciate it! I should say that we appreciate it because I know that Linda and Will do as well. My very best regards to all… sb   FRIDAY, APRIL 04, 2008 04:52 AM, EDT Well, it has now been 2 weeks since my kidneys were removed. I’m doing fine and getting a little stronger each day. Pain is low or non-existent most of the time and I’m eating lots. Linda has steadily been researching ways to still eat well with the various dietary restrictions I am now under. And that research has paid off – I am eating well. Definitely getting in touch with my inner carnivore, that’s for sure. Would you like half a steak sandwich, Stephen? Sure – it’s the middle of the morning – but why not? Actually – that really helps get me through four hours of dialysis. Then I’ll have a little protein powder shake immediately afterwards, and the rest of my steak sandwich. That’ll hold me ‘til dinner. Dialysis sucks out protein, along with the bad stuff in my blood, and so it is just plain difficult for me to get enough protein right now. I ventured out of the house for something other than dialysis yesterday for the first time. Stopped by my local music store – Winter Sound – and also went out for dinner last night. It felt great to be out and about. I walk a bit like an old man still, but a little straighter each day. Anyway, I am feeling pretty well and am just trying to get as healthy and strong as I can before the transplant next month. At that time, my immune system will be heavily suppressed so as not to reject the new kidney from Michael. That will be an interesting process, I’m sure… Linda and I continue to appreciate everyone’s words and gestures of support – thank you! Here's a little something I've come up with the last few days, although the idea for it came to me in the hospital at about 3AM one night... Gratitude Thanks for comfort late at night Thanks for taking care of me For my nurses, one and all Without you, where’d I be? And thanks for the scalpel skillfully held Thanks for a doctor’s healing hands For the wisdom you’ve acquired That helps you understand Thanks for the creatures in the labs Living lives unfair Please remember their sacrifice And not forget to care Thanks to people who give of themselves Be it kidney, lung or heart What it means is someone else has A chance for a brand new start And thanks for friends all ‘round the world Love and prayers sent my way The cards and books and silly things That brightened up my day Thanks to my family, near and far For pulling me right on through Too often I forget To say I love you too Most of all, thanks to you, my love Thanks to you, my loving wife Wasn’t sure how I’d handle this Interruption to my life Without you, I’d have still made it through But rougher, that’s for sure With you, it doesn’t matter the ill You are my cure So thanks to all who give a hoot I’m gonna get through this thing A little tattered, a little torn Still - a glorious Spring! My guitar has been waiting for me In the corner for some time It’s been waiting to write this song To make these silly rhymes My dog and I are going for a stroll To enjoy the morning air We wish everyone a wonderful day All creatures everywhere best, sb SUNDAY, APRIL 20, 2008 02:31 PM, EDT

Hello everyone, It’s been a while and I’m sitting at dialysis with time on my hands and so I thought I’d write a quick update… It’s now a month since my kidneys were removed. That doesn’t seem possible, but it’s true. I continue to get a little stronger each day with the goal of being as healthy as I can be for the upcoming transplant – now less than a month away. Dialysis is not fun but I am managing to deal with it reasonably well, although I am definitely glad it’s a stopgap measure! I generally feel wiped out after 4 hours on the machine and don’t get much of anything else done the rest of the day on Tuesdays, Thursdays and Saturdays. Today the machine I was hooked up to decided to quit about 20 minutes in and I had to wait for a while until another machine was available. I remained hooked up to the first machine while I waited and won’t be out of here today until about 4:30 – so five hours on today. Today is the first day I will have driven myself to and from dialysis, so that’s progress. The most annoying thing the last ten days or so has been my peeling skin. It has been like I had a bad sunburn over nearly my whole body, even strange places like the palms of my hands were peeling like crazy. And my blood pressure hasn’t quite settled down yet, but that will happen. Overall, I feel pretty good and have little to complain about. I have been marginally productive lately. Got into the studio for a session to nearly finish up my vocal cd – Alert the Authorities – which I started back in 2006 and had left more or less on hold for a while. I tossed out a couple of the tracks I had recorded previously and found a couple of tunes to replace them. Actually, I found one and wrote another. I turned the poem I shared here in my last post into a song. There’s very little left to do with this cd now and my aim is to have it sent off to the manufacturer by the beginning of summer. I’ve been playing lots of guitar! And while dialyzing the last week I have been working on my computer polishing up the orchestral arrangements of my Powhatan Suite, written about 5 years ago and released in all guitar form on my Music From Tsenacommacah cd. So that’s very satisfying making some progress on this suite. In fact, it is very nearly complete! One project I will undertake in the next couple of years is take this score into the studio and, using some software I purchased recently, put this on record. The software is actually a library of samples of the Vienna Philharmonic Orchestra. It is a library used for film scores and is quite amazing sounding. So I can’t wait to get in the studio and try this out. And I have all sorts of other musical projects simmering on the back burners too. So don’t worry about me just sitting around on my duff! And I put some plants in the garden yesterday too. That felt good. As always, a big thank you to everyone who has contacted me here or otherwise to express their good wishes – I really appreciate it! I should say that we appreciate it because I know that Linda and Will do as well. My very best regards to all… sb

FRIDAY, APRIL 04, 2008 04:52 AM, EDT

Well, it has now been 2 weeks since my kidneys were removed. I’m doing fine and getting a little stronger each day. Pain is low or non-existent most of the time and I’m eating lots. Linda has steadily been researching ways to still eat well with the various dietary restrictions I am now under. And that research has paid off – I am eating well. Definitely getting in touch with my inner carnivore, that’s for sure. Would you like half a steak sandwich, Stephen? Sure – it’s the middle of the morning – but why not? Actually – that really helps get me through four hours of dialysis. Then I’ll have a little protein powder shake immediately afterwards, and the rest of my steak sandwich. That’ll hold me ‘til dinner. Dialysis sucks out protein, along with the bad stuff in my blood, and so it is just plain difficult for me to get enough protein right now. I ventured out of the house for something other than dialysis yesterday for the first time. Stopped by my local music store – Winter Sound – and also went out for dinner last night. It felt great to be out and about. I walk a bit like an old man still, but a little straighter each day. Anyway, I am feeling pretty well and am just trying to get as healthy and strong as I can before the transplant next month. At that time, my immune system will be heavily suppressed so as not to reject the new kidney from Michael. That will be an interesting process, I’m sure… Linda and I continue to appreciate everyone’s words and gestures of support – thank you! Here's a little something I've come up with the last few days, although the idea for it came to me in the hospital at about 3AM one night... Gratitude Thanks for comfort late at night Thanks for taking care of me For my nurses, one and all Without you, where’d I be? And thanks for the scalpel skillfully held Thanks for a doctor’s healing hands For the wisdom you’ve acquired That helps you understand Thanks for the creatures in the labs Living lives unfair Please remember their sacrifice And not forget to care Thanks to people who give of themselves Be it kidney, lung or heart What it means is someone else has A chance for a brand new start And thanks for friends all ‘round the world Love and prayers sent my way The cards and books and silly things That brightened up my day Thanks to my family, near and far For pulling me right on through Too often I forget To say I love you too Most of all, thanks to you, my love Thanks to you, my loving wife Wasn’t sure how I’d handle this Interruption to my life Without you, I’d have still made it through But rougher, that’s for sure With you, it doesn’t matter the ill You are my cure So thanks to all who give a hoot I’m gonna get through this thing A little tattered, a little torn Still - a glorious Spring! My guitar has been waiting for me In the corner for some time It’s been waiting to write this song To make these silly rhymes My dog and I are going for a stroll To enjoy the morning air We wish everyone a wonderful day All creatures everywhere best, sb

SUNDAY, APRIL 20, 2008 02:31 PM, EDT

SUNDAY, MARCH 30, 2008 06:36 AM, EDT

Hello again. Well, now 10 days have passed since the surgery and I am feeling more myself all the time. Yesterday was the first day I took no pain meds at all and hopefully today will be the same. My insides have calmed considerably and my appetite is fully restored. That doesn’t mean I can eat what I want necessarily; I can’t because now that I don’t have kidneys, I have to be very careful about the amount of fluid, potassium, phosphorus and sodium that go in me, but at least I feel like eating. And there are still plenty of things I can eat. My dietician – also known as Nurse Linda – has been vigorously researching what I should and should not be consuming. Some things are wacky – pineapple is ok, but pineapple juice is not – and some things are just the opposite of what was best for me prior to the removal of my kidneys, the amount of protein I need to take in, for example. Before, I really didn’t eat all that much meat; now – I must. Steak and eggs for breakfast would have been a really odd and probably bad choice for me before the surgery but now it’s a good thing. A glass of orange juice – there’s a really bad idea. Cranberry juice is much better, due to the much lower amount of potassium. Tomatoes are bad, cauliflower are excellent, etc. Actually that part – the choosing between good and bad foods – is easy. Harder is the controlling of fluid intake. I don’t just get a drink of water if I’m thirsty. I need to be trying to stick to a quart a day. Or dialysis becomes too brutal… Ah, dialysis… Haven’t said much about that thus far, but I have gone through it now 6 times. On some occasions they have taken six and a half pounds off of me in a four hour stretch. Think about that – six and a half pounds removed from your blood in four hours. It is very literally draining and I have been on the edge of passing out several times. Dialysis is definitely not fun; essential – yes, but not enjoyable at all. But if I didn’t already fully appreciate the upcoming gift of a new kidney from my donor Michael, I most certainly do now. It will spare me from a life of dialysis. My four hour sessions, three times a week, until May 14 will be quite enough dialysis for me, thank you very much. I know I am lucky and that many are not. Some of the folks I see at the dialysis center are in pretty bad shape and my heart goes out to them. Clearly some are not doing what they should to try to take care of themselves, but it is a hard thing on the body regardless. So, that’s enough for now. My continued and renewed appreciation to all who have expressed support for me and my family – thank you!!! Oh – I picked up a guitar yesterday for the first time since the surgery… Love, Stephen

FRIDAY, MARCH 28, 2008 11:07 AM, EDT

Hello everyone - it's me - Stephen... I am at home and trying very hard to put myself back together after one hell of a week... Before I tell you about it though, I just want to say again how moved I am by the outpouring of love and support that has come the way of my family. The messages here at Caring Bridge, along with the emails and phone messages we have gotten, are overwhelming in the amount of love and generosity of spirit they represent. From the bottom of my heart, thank you, one and all... OK - so my last week or so: Dr. Brown, my surgeon, said something to us in our meeting a few days before surgery about how surgery is nothing more than controlled injury. He said my body wasn't going to know the difference between him and a saber-toothed tiger. He was right. Aside from the fact that he didn't eat me AND he sewed me up again after the attack. Anyway, he removed 15 pounds of kidneys - the largest he'd ever seen. My brother John and sister Joanna are twins and they weighed less than that when they were born! I'm waiting to see the pictures of these monstrosities taken from my body. Apparently the cysts have moved onto my liver as well, which is common with this disease, but they just aren't as problematic there. My adrenal glands, which were at some risk during the surgery, were left intact and unharmed. So, from my perspective, the two most miserable things about such surgeries are: one - it's hard to believe how many basic movements depend one the use of ones abdominal muscles. With these cut open, every movement becomes very painful. and two - the intestines get knocked around pretty harshly during the removal of such large kidneys and so they respond by hurting and shutting down. That means that any gas pain just stays there and grows. And, of course, puts more pressure on those recently sliced abdominals... So - I essentially didn't eat anything for a week. Still haven't had anything resembling an actual meal, but I am gradually regaining my appetite, thank goodness. Needless to say, I have lost a bunch of weight - about 30 pounds or more. I look somewhat skin and bones, am walking like a very old man, but I did just shave a few minutes ago for the first time since last Thursday and at least I don't look quite as scary as I have been. I went for dialysis at the local center for the first time yesterday and am afraid I may have scared people with my Wild Man of Borneo after surgery look... I need to take a few moments to say how fantastic the nursing staff at Henrico Doctor's Hospital were for me. They were great - and I quite literally wouldn't be here without them. Any time day and night, Chris, Melanie, Shannon, Linda, Agnes, Jane and Sherri (and others I may not be remembering) were there helping me get through my first four nights in the hospital. I'm sure I wasn't the most pleasant of patients as I was pretty miserable, but these women always tried to make my situation a little better. And the nurses in the next ward I was moved to were great too. Thanks particularly to Tiana and Sandra. And then there are Kay and Nancy from the transplant clinic. They have seen all of this many times before and are great sources of information and encouragement. And I really haven't thanked Lisa yet either. Her work with the potential donors has been very behind the scenes from my perspective, but so important for my health and future. At any rate, I came home this Wednesday afternoon and am slowly on the mend. I have a pretty bad rash which seems to have been due to the pain meds I was on in the hospital. So I have looked very purply red - which along with my weight loss and general bedragglement have not contributed to my appearance. This is improving however... It has been a thoroughly difficult week and I am glad it is behind me. I look forward to getting through to the next stage of this 2 stage process - the transplant itself. Mercifully, Michael, my donor, won't have to undergo anywhere near the same level of pain. One of his kidneys will be removed - but laparoscopically. So the abdominals don't have to be cut. And that's a very good thing indeed. Also wonderful is the fact that the installation of Michael's kidney in me will not require me to be cut in the same places as this last time. I am probably rambling a bit and a little incoherent at this point, but I wanted to write a little bit for everyone here today. Thanks again so much for your love, support and encouragement! And thanks to Linda for everything...there are not enough words... best to all, stephen

MONDAY, MARCH 24, 2008 10:46 PM, EDT

Dear all, Stephen was moved from the ICU to the PSU last night at 10:30. Okay, so what is the PSU?! 'Progressive Surgical Unit', I think... not quite a run of the mill hospital room, but a lot less intense than surgical intensive care. Fewer beeps per minute. When I left him tonight he was sleeping, but it's been rough for him these last few days. Balancing the pain meds and keeping his blood pressure steady while getting him established on dialysis has been a bit of a trick. When the pain meds are working he can smile. He has color (other than gray) in his face again and his eyes are clear. Today he was able to get himself out of bed a couple of times. He still has little appetite, but then how inspiring is the 'total liquids' diet anyway? I have a new appreciation for nurses, especially those we met in the SICU at Henrico Doctor's Hospital. As different as they are from one another, they were all focused on my husband's well-being. For that I am very grateful. They were there for him in the middle of the day or the middle of the night, no matter what he needed, for hours on end. I am a worrier by nature, but I never doubted that Stephen was safe in the hands of these capable women (and the charge nurse - Barry, from New Jersey - who I never really met). We'll be back in the same unit in May after the transplant. It will be one less thing to worry about in the days before that surgery. If you are a nurse reading this, imagine that right now I am giving you a great big hug. You deserve it! And finally let me say that I had a terrible drive home tonight... feeling so tired and then got stuck in a traffic jam for construction after an hour of driving. And then, after reading your notes I felt so much better. Thank You! Love and Peace, Linda

FRIDAY, MARCH 21, 2008 08:56 AM, EDT