There isn't a barrage of excitement in my world because of my recent need for new kidney. I have a few more Dr. appointments than the average Joe and I try to avoid certain foods in my diet. I try not to forget to take my medication and I'm trying to get in the habit of tracking my blood pressure from home instead of waiting for doctor visits. I constantly acknowledge my lack of anything resembling exercise but keep telling myself I'm going to change that (but I know I'm just lying to myself because I'm a lazy bleep).
Life... goes on. The mundane world I live in continues as if nothing is all that different. If all goes well that's actually how it will be even after the kidney transplant or throughout any period of dialysis. I like simple. I like uncomplicated. I like naps when I can afford to squeeze one in. I prefer to spend holidays at home or at least with my small crew and not out at someone's home with 27 other people all gathered around the table feasting on the celebratory meal.
I still do things that piss off my wife... and she still can't stand me about as often as she seems to like me. I still try to help Annie learn to ride her bike without training wheels. I still see Charly on Sundays... when he's not too busy making plans with his friends or his girl friend... they seem to come first more and more these days. I still barely see my daughter Amber, who lives on her own in New Hampshire and has a crazy world of her own going on.
I'll try to garden this summer... recovery pending. I hope to find time for a hike or two. I look forward to my buddy Kyle returning to the area after spending a year traveling the world (I'm so jealous). And maybe I'll even be able to convince Meg to try camping again (we got her to go last year and she survived it despite the cold and the rain).
It's just another day... that's what most days are for me... just another day. There's an article today in our local paper... if you want to read it you can find it here:
http://www.newburyportnews.com/local/x210922218/Dreaming-of-a-donor
My name is Bil... and I have kidney disease.
Wednesday, April 24, 2013
Thursday, April 18, 2013
A Week On The List
So it's been a week since I went onto the list of people looking for a kidney transplant and though I'm not given any details... I had spoken to my coordinator this morning and she mentioned that there has been a great response from you my supporters... and I appreciate the effort from all of you... hopefully one of you will actually work out to be a good donor for me or perhaps someone else on the list who happens to have someone among their supporters that is a match for me.
I had an appointment this morning with my nephrologist and half expected to hear that I would need to go on dialysis within the next week or two... but instead she said that it isn't about a certain number (in regards to my creatinine levels) but instead is about the symptomatic conditions of the patient (that would be me) that determines when dialysis needs to begin and despite my rising creatinines & potassium levels, not to mention my blood pressure and my increased anemic condition... I actually appear to be mostly healthy and so she may want to increase my meds, but I'm okay for now without the dialysis.
In other news... our local paper has contacted me in regards to doing a story on me... at first I was thinking it might be silly... but then I realized it might be an opportunity to get out some awareness about the need for kidney donors... so I mentioned that I would be interested as long as it wasn't a woe is me type story but allowed me to talk about the importance of live kidney donation. I'll keep you posted if anything further happens there.
That's all I've got for today.
My name is Bil ... and I have kidney disease
I had an appointment this morning with my nephrologist and half expected to hear that I would need to go on dialysis within the next week or two... but instead she said that it isn't about a certain number (in regards to my creatinine levels) but instead is about the symptomatic conditions of the patient (that would be me) that determines when dialysis needs to begin and despite my rising creatinines & potassium levels, not to mention my blood pressure and my increased anemic condition... I actually appear to be mostly healthy and so she may want to increase my meds, but I'm okay for now without the dialysis.
In other news... our local paper has contacted me in regards to doing a story on me... at first I was thinking it might be silly... but then I realized it might be an opportunity to get out some awareness about the need for kidney donors... so I mentioned that I would be interested as long as it wasn't a woe is me type story but allowed me to talk about the importance of live kidney donation. I'll keep you posted if anything further happens there.
That's all I've got for today.
My name is Bil ... and I have kidney disease
Sunday, April 14, 2013
The Lone Wolf Has Feelings Too
I build walls. Not real walls.. I build those emotional walls that prevent me from getting hurt. Its a dysfunction that I've allowed myself to embrace to keep my heart safe from any real heart ache. I haven't always built walls.. but I learned to build them in response to the heart aches of my youth.
When I'm alone I watch movies that make me a little teary eyed so I can let the walls down for a few moments and experience a release of emotion. When I see a friend express sadness or concern on facebook I often let myself feel their pain and try to offer words of compassion and strength... but in the real world I have a hard time doing that in person... because it might reveal a weakness.. a crack in the wall... and they might take advantage of it and I can't let them see the true Bil. I work to keep up my lone wolf persona.
I love human emotions and I truly enjoy the experience of all of them. I like the sadness as much as the joy and I've cried tears at both ends of the spectrum. I like jealousy, but never feel a hateful jealousy... for me its always more of an awe or appreciation for the person of whom I feel the jealousy.. I'm always disappointed when I hear about those who have committed horrific events in the name of hateful jealousy... but I get it... I understand how moving emotions can be and how they can make us want to act or react in a way that is extreme to our normal.
Guilt is an interesting human emotion. Its been a while since I've felt any serious guilt. I mean I regularly feel small doses of guilt... like when I tell my kids that I need them to give me some space for something I'm doing... when all they wanted to do was spend a little time with me. Or when I yell at them for something dumb that happened and I snap before thinking about the reality of the situation. But I'm feeling a new guilt that I haven't known before. and this is the real point of today's post.
There's a little heart on my drivers license... it's there to let people know that I'm an organ donor. I've always thought that if I died and my organs could be used to save another's life then I would want exactly that to happen. But here I am today in need of an organ. A kidney. And all of us has two but only need one to survive. I need someone to either step up and give up one of theirs for me or I need someone else to die and be an organ donor that matches my make up well enough that I can receive one of their kidneys. And this is filling me with amazing guilt. Why didn't I step up and offer one of my kidneys 20 years ago... before I got kidney disease? Just because I didn't know a single person out of the 100,000 in need of a kidney is no excuse for allowing even one of them to die while waiting too long for one of their own... so what gives me the right to ask for another's kidney to keep me alive. And now that I'm tainted... can I even donate my organs in death? will the meds that I need to go on ruin my ability to donate to another?
I've heard, but can't confirm that several have stepped up to the plate to see if they're potential donors and I appreciate all of you who have (and I feel no resentment for any who haven't)... and I hope that this all works out so that I'll get a living donor's kidney. But I'm also secretly (not a secret anymore) hoping that I'll end up being one of those with a donor that doesn't match me but matches someone else so that we can have a paired donation... and at least one other person will get a kidney because you all stepped up for me. Or maybe of the several of you who step up for me... one or two or even more will feel similar to how I'm feeling right now... and allow one of their kidneys to go to a stranger who might otherwise die while waiting on a 3-5 year waiting list for a cadaver kidney that never came. Maybe then this guilt will subside.
My name is Bil... and I have kidney disease.
When I'm alone I watch movies that make me a little teary eyed so I can let the walls down for a few moments and experience a release of emotion. When I see a friend express sadness or concern on facebook I often let myself feel their pain and try to offer words of compassion and strength... but in the real world I have a hard time doing that in person... because it might reveal a weakness.. a crack in the wall... and they might take advantage of it and I can't let them see the true Bil. I work to keep up my lone wolf persona.
I love human emotions and I truly enjoy the experience of all of them. I like the sadness as much as the joy and I've cried tears at both ends of the spectrum. I like jealousy, but never feel a hateful jealousy... for me its always more of an awe or appreciation for the person of whom I feel the jealousy.. I'm always disappointed when I hear about those who have committed horrific events in the name of hateful jealousy... but I get it... I understand how moving emotions can be and how they can make us want to act or react in a way that is extreme to our normal.
Guilt is an interesting human emotion. Its been a while since I've felt any serious guilt. I mean I regularly feel small doses of guilt... like when I tell my kids that I need them to give me some space for something I'm doing... when all they wanted to do was spend a little time with me. Or when I yell at them for something dumb that happened and I snap before thinking about the reality of the situation. But I'm feeling a new guilt that I haven't known before. and this is the real point of today's post.
There's a little heart on my drivers license... it's there to let people know that I'm an organ donor. I've always thought that if I died and my organs could be used to save another's life then I would want exactly that to happen. But here I am today in need of an organ. A kidney. And all of us has two but only need one to survive. I need someone to either step up and give up one of theirs for me or I need someone else to die and be an organ donor that matches my make up well enough that I can receive one of their kidneys. And this is filling me with amazing guilt. Why didn't I step up and offer one of my kidneys 20 years ago... before I got kidney disease? Just because I didn't know a single person out of the 100,000 in need of a kidney is no excuse for allowing even one of them to die while waiting too long for one of their own... so what gives me the right to ask for another's kidney to keep me alive. And now that I'm tainted... can I even donate my organs in death? will the meds that I need to go on ruin my ability to donate to another?
I've heard, but can't confirm that several have stepped up to the plate to see if they're potential donors and I appreciate all of you who have (and I feel no resentment for any who haven't)... and I hope that this all works out so that I'll get a living donor's kidney. But I'm also secretly (not a secret anymore) hoping that I'll end up being one of those with a donor that doesn't match me but matches someone else so that we can have a paired donation... and at least one other person will get a kidney because you all stepped up for me. Or maybe of the several of you who step up for me... one or two or even more will feel similar to how I'm feeling right now... and allow one of their kidneys to go to a stranger who might otherwise die while waiting on a 3-5 year waiting list for a cadaver kidney that never came. Maybe then this guilt will subside.
My name is Bil... and I have kidney disease.
Saturday, April 13, 2013
From Denial To Dialysis
I'm quite aware of the stages of loss or grief. In my life I've experienced these stages on several occasions, although none in regards to death. I've also witnessed my wife going through these stages in regards to her mother's death in 2005. It's fascinating how these same stages present themselves throughout the periods of acceptance of any grief or loss. Even in our awareness of these stages... we can't deny them.
I was diagnosed with kidney disease in 2009 and while I've never much thought about the reality that this is a serious and potentially life threatening charge... in some kinda surreal way I can see that even now I work daily through these stages. For those unfamiliar of what I'm talking about, the stages of loss include denial, anger, bargaining, depression and eventually acceptance.
Denial is the plane I live on most days. I don't feel sick.. so how can I be sick. Actually I've been quite sick over the last few years but the symptoms are not those of a person with early stage kidney disease... and my focus was on trying to move beyond that sickness... which even now remains officially un-diagnosed. It's possible I've finally moved beyond whatever that was I was going through... although I won't be able to say for certain until an equal period of time passes where I don't feel those symptoms as has passed since first experiencing them.
What I also find interesting about humans is our ability to forget the pain. If we couldn't forget the pain then women would never have more than one child, right? And while I can acknowledge that I've had a crazy four years of headaches and vomiting I mostly just want to forget about that now and try to live in the here and now... especially during the days and hours where I feel up to being alive and enjoying life... although I have to admit to moments of weakness where death is a welcome respite to the constant rallying.
Back to the kidney disease and the stages of grief. I know because the doctors tell me so, that I'm approaching the end of my kidneys ability to clean the toxins from my blood and that this will in fact lead to my death unless I go on dialysis or have a kidney transplant in the very near future... I suspect I have about two weeks before the doctors will tell me we can't put it off any longer... that dialysis is inevitable.
Over the last several months I've been doing everything I can to convince my nephrologist (a kidney doctor) that we need to put this off a little longer... that we haven't done the science... couldn't it be the blood pressure meds causing the problem.. couldn't it be the large quantities of citrus juice that I've been drinking that's raised my potassium levels... shouldn't we give a few more months.. weeks.. days... I've been bargaining with my doctor.
I'm not sure I can cite any particular examples of anger although I had recently hit a wall in my patience in regards to the other symptoms I was experiencing and I kinda blew up at my doctor and I recall a day recently where I went off on a bit of a diatribe on Facebook over the general state of modern health care. Perhaps my pent up anger was released through those episodes.
Depression is often hard to notice until you're pretty deep down in the well... so I'm not sure if I've been depressed recently either... perhaps the moments where I catch myself slightly teary eyed pondering the potential that I might not see Charly and Annie graduate from high school.. college... marry and have children. I like to think of it as part of the preparations I need to go through in the event that this doesn't go as well as I hope it will. There's that denial again.
My name is Bil... and I have kidney disease
I was diagnosed with kidney disease in 2009 and while I've never much thought about the reality that this is a serious and potentially life threatening charge... in some kinda surreal way I can see that even now I work daily through these stages. For those unfamiliar of what I'm talking about, the stages of loss include denial, anger, bargaining, depression and eventually acceptance.
Denial is the plane I live on most days. I don't feel sick.. so how can I be sick. Actually I've been quite sick over the last few years but the symptoms are not those of a person with early stage kidney disease... and my focus was on trying to move beyond that sickness... which even now remains officially un-diagnosed. It's possible I've finally moved beyond whatever that was I was going through... although I won't be able to say for certain until an equal period of time passes where I don't feel those symptoms as has passed since first experiencing them.
What I also find interesting about humans is our ability to forget the pain. If we couldn't forget the pain then women would never have more than one child, right? And while I can acknowledge that I've had a crazy four years of headaches and vomiting I mostly just want to forget about that now and try to live in the here and now... especially during the days and hours where I feel up to being alive and enjoying life... although I have to admit to moments of weakness where death is a welcome respite to the constant rallying.
Back to the kidney disease and the stages of grief. I know because the doctors tell me so, that I'm approaching the end of my kidneys ability to clean the toxins from my blood and that this will in fact lead to my death unless I go on dialysis or have a kidney transplant in the very near future... I suspect I have about two weeks before the doctors will tell me we can't put it off any longer... that dialysis is inevitable.
Over the last several months I've been doing everything I can to convince my nephrologist (a kidney doctor) that we need to put this off a little longer... that we haven't done the science... couldn't it be the blood pressure meds causing the problem.. couldn't it be the large quantities of citrus juice that I've been drinking that's raised my potassium levels... shouldn't we give a few more months.. weeks.. days... I've been bargaining with my doctor.
I'm not sure I can cite any particular examples of anger although I had recently hit a wall in my patience in regards to the other symptoms I was experiencing and I kinda blew up at my doctor and I recall a day recently where I went off on a bit of a diatribe on Facebook over the general state of modern health care. Perhaps my pent up anger was released through those episodes.
Depression is often hard to notice until you're pretty deep down in the well... so I'm not sure if I've been depressed recently either... perhaps the moments where I catch myself slightly teary eyed pondering the potential that I might not see Charly and Annie graduate from high school.. college... marry and have children. I like to think of it as part of the preparations I need to go through in the event that this doesn't go as well as I hope it will. There's that denial again.
My name is Bil... and I have kidney disease
Thursday, April 11, 2013
The Call Came In
I got the call tonight. First thing tomorrow they'll be putting me on the list. I need to call them back and go over the details but after that if you're one of the few who want to see if you're a potential donor you'll be able to go online to http://www.lahey-livingdonor.org/ and fill out the form.
In other news... most of you know I'm a hardcore atheist, right? Well I was talking to my Dad on the phone tonight and he told me that my brother plans on donating his kidney under certain conditions... including that I have to take his kidney to church on Easter Sunday. Very funny Rick.
There may be some pertinent information I need to provide for those who are filling out the form on the web site and there's a phone number too... but I'll have to add that to this post tomorrow after I speak with my coordinator.
By the way... in the event that you do fill out the form and appear to be a good candidate... my coordinator and your coordinator will be two different people. I'll be kept out of the process and will only be brought in once they know they have an actual donor. Even then I'm not sure I'll know who the donor is unless that person gives permission for me to know.
That's all I've got for tonight.
Additional info... if you prefer to talk to a person and not fill something out online... fee free to call 781-744-2500 and ask for Denise Morin.
Also... not that I'm looking for gifts... but my birthday is 072365 apparently you need this info if you're filling out the form.
Thanks
I'm Bil... and I've got kidney disease.
In other news... most of you know I'm a hardcore atheist, right? Well I was talking to my Dad on the phone tonight and he told me that my brother plans on donating his kidney under certain conditions... including that I have to take his kidney to church on Easter Sunday. Very funny Rick.
There may be some pertinent information I need to provide for those who are filling out the form on the web site and there's a phone number too... but I'll have to add that to this post tomorrow after I speak with my coordinator.
By the way... in the event that you do fill out the form and appear to be a good candidate... my coordinator and your coordinator will be two different people. I'll be kept out of the process and will only be brought in once they know they have an actual donor. Even then I'm not sure I'll know who the donor is unless that person gives permission for me to know.
That's all I've got for tonight.
Additional info... if you prefer to talk to a person and not fill something out online... fee free to call 781-744-2500 and ask for Denise Morin.
Also... not that I'm looking for gifts... but my birthday is 072365 apparently you need this info if you're filling out the form.
Thanks
I'm Bil... and I've got kidney disease.
Tuesday, April 9, 2013
Match Maker, Match Maker Make Me A Match
So maybe you're thinking that you want to offer to donate a kidney. Its a hard decision for some of you and yet others will want to jump in with both feet... or both kidneys. I'm sure that several of you will already know without doubt that you are not giving up a kidney for me or anyone... and I don't blame you... its a scary thought, right? On the other hand some of you are thinking you're ready to go and you just want me to tell you what you need to do... and I appreciate the enthusiasm... but we've got a little time here and the goal is to go about this in a somewhat practical and sensible fashion so I get the best possible kidney for my situation.
First I need to get on the list... which should be as of this Friday (April 12th), barring any unforeseen circumstances. Until I'm on the list no one can do anything. Once I'm on the list, I'll send out a web address and a phone number for anyone who is interested in finding out if they are in fact a potential donor.
What does that even mean... Potential Donor? Well if you're over 60 or under 18... you're already off the list. If you have high blood pressure... you're probably not going to be a good donor. If you've recently had any serious health issues of your own then you're probably no good to me unless you're dead and your kidneys are in relatively good shape and its five years from now and no other living donors have stepped forward and after five years of me being on dialysis and waiting my turn... you just happened to pass away and your kidneys were a reasonable match for me. But lets not go there (I know... too late, I already went there).
If on the other hand you're reasonably healthy, between the ages of 18 & 60, have blood type A or O, share at least a few antibodies in common with my antibodies and a cross-match of our blood produces a negative result (in other words.. my blood doesn't try to attack yours and vice-versa) then I think they'll put you on the short list of potential donors.
But wait... all of you AB & B blood types... don't walk away just yet... if you're really gun ho about donating and you're thinking awe shucks, I can't help Bil... don't be so sure. You see there are plenty of people out there looking for a donor to match them... but they only have donor friends and relatives that match other people... like me. In those cases your kidney might not end up inside of me, but your donation to another allows me to receive a really great match for my blood type. Its called paired donation.
I suppose its somewhat presumptuous of me to even think one person will actually step up once the info is made available. But I have to believe I'll find a living donor because its the only way I can avoid dialysis and its the only way I can expect the very best chance of seeing my children grow up, go to college and marry and have kids of their own. And I know a few of you have already said you'll donate a kidney, but those words, as generous as they sound, don't guarantee action or that you'll be the best donor for me. So I'll reach out to many in hopes of a scant few and the possibility of the perfect match.
My names is Bil... and I have kidney disease.
First I need to get on the list... which should be as of this Friday (April 12th), barring any unforeseen circumstances. Until I'm on the list no one can do anything. Once I'm on the list, I'll send out a web address and a phone number for anyone who is interested in finding out if they are in fact a potential donor.
What does that even mean... Potential Donor? Well if you're over 60 or under 18... you're already off the list. If you have high blood pressure... you're probably not going to be a good donor. If you've recently had any serious health issues of your own then you're probably no good to me unless you're dead and your kidneys are in relatively good shape and its five years from now and no other living donors have stepped forward and after five years of me being on dialysis and waiting my turn... you just happened to pass away and your kidneys were a reasonable match for me. But lets not go there (I know... too late, I already went there).
If on the other hand you're reasonably healthy, between the ages of 18 & 60, have blood type A or O, share at least a few antibodies in common with my antibodies and a cross-match of our blood produces a negative result (in other words.. my blood doesn't try to attack yours and vice-versa) then I think they'll put you on the short list of potential donors.
But wait... all of you AB & B blood types... don't walk away just yet... if you're really gun ho about donating and you're thinking awe shucks, I can't help Bil... don't be so sure. You see there are plenty of people out there looking for a donor to match them... but they only have donor friends and relatives that match other people... like me. In those cases your kidney might not end up inside of me, but your donation to another allows me to receive a really great match for my blood type. Its called paired donation.
I suppose its somewhat presumptuous of me to even think one person will actually step up once the info is made available. But I have to believe I'll find a living donor because its the only way I can avoid dialysis and its the only way I can expect the very best chance of seeing my children grow up, go to college and marry and have kids of their own. And I know a few of you have already said you'll donate a kidney, but those words, as generous as they sound, don't guarantee action or that you'll be the best donor for me. So I'll reach out to many in hopes of a scant few and the possibility of the perfect match.
My names is Bil... and I have kidney disease.
Sunday, April 7, 2013
My name is Bil and I have kidney disease.
So I've got kidney disease. It's not the end of the world. It's not like I live with pain all day or even a few minutes a day... if you see me you'll say "he doesn't look sick to me." As diseases go... I got a pretty good one. No pain, no suffering, relatively easy to control with fairly harmless meds. When kidney disease gets bad enough you can get a kidney transplant and buy yourself another 5,10 maybe even 20 years of life. And if you do need a new kidney, the good news is everyone has two but only needs one to survive and live a normal healthy life... so literally everyone out there can be a donor for a kidney... lets see someone with a heart disease or liver disease boast about that stroke of anatomical luck. So I'll take my kidney disease as the lemons life has handed me to turn into lemonade.
My kidney disease was diagnosed in 2009 and at that time it was suggested that I probably wouldn't need dialysis ( a treatment that keeps you alive while you wait for a new kidney) or a new kidney until I was in my sixties. Unfortunately for some reason my disease has advanced rapidly and at 47 I'm already at the point where I need that new kidney.
I mentioned Dialysis above, there's another stroke of good luck. Dialysis allows one to stay alive with non functioning kidneys for several years while waiting to receive a new kidney. And there are even two types of dialysis. So the options are plentiful and the general outlook is good. But still... realistically speaking... I'm sick and there's much to be done to guarantee that I get to live to see my seven year old daughter graduate from college, meet the person of her dreams... marry and have children of her own.
There are close to 100,000 people in the united states waiting for a new kidney. Each year approximately 4,000 organ donor's untimely and unfortunate death allow for approximately 8,000 people on that list to get their new kidneys. I'm told that approximately 50% of those people on the waiting list will come up with a living donor. That leaves approx 42,000 still waiting and each year more than 5,000 of those will die while waiting. And more than 2,000 are added to the list each month.
Today I'm just a man trying to get on the list. Once on it I hope to be one of those who finds his own living donor. They tell me the best statistics for life expectancy is with a living donor. I think this is a fairly reasonable goal.
My name is Bil and I have kidney disease.
My kidney disease was diagnosed in 2009 and at that time it was suggested that I probably wouldn't need dialysis ( a treatment that keeps you alive while you wait for a new kidney) or a new kidney until I was in my sixties. Unfortunately for some reason my disease has advanced rapidly and at 47 I'm already at the point where I need that new kidney.
I mentioned Dialysis above, there's another stroke of good luck. Dialysis allows one to stay alive with non functioning kidneys for several years while waiting to receive a new kidney. And there are even two types of dialysis. So the options are plentiful and the general outlook is good. But still... realistically speaking... I'm sick and there's much to be done to guarantee that I get to live to see my seven year old daughter graduate from college, meet the person of her dreams... marry and have children of her own.
There are close to 100,000 people in the united states waiting for a new kidney. Each year approximately 4,000 organ donor's untimely and unfortunate death allow for approximately 8,000 people on that list to get their new kidneys. I'm told that approximately 50% of those people on the waiting list will come up with a living donor. That leaves approx 42,000 still waiting and each year more than 5,000 of those will die while waiting. And more than 2,000 are added to the list each month.
Today I'm just a man trying to get on the list. Once on it I hope to be one of those who finds his own living donor. They tell me the best statistics for life expectancy is with a living donor. I think this is a fairly reasonable goal.
My name is Bil and I have kidney disease.
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