As I hit my third year anniversary of being on dialysis this week I also can claim that I've had a month of some of the best sleep of the last 8 years of my life. It has not been a perfect month by any stretch of the imagination. I still vomit stomach acid more mornings than I don't and the mornings following a treatment tend to be the more severe occurrences of that, though no one seems bothered by this other than myself.
For my first two years and up to about 6 weeks ago, having a half a kilogram to one kilogram of fluid taken off during a treatment was typical and just two treatments per week were plenty to keep me running. But since about 6 weeks ago, I've needed 2 to 4 kilograms per treatment and three treatments per week to keep me running. This is a clear sign that my health officially is declining.
With end stage renal disease there's often a "honeymoon" period where the disease is present but not having any significant impact on the overall health of the patient. This typically is a 3 to 6 month period. I've been lucky to get almost three full years of said honeymoon period. But the honeymoon is over.
These days my treatments are for three hours. Last week a technician had accidentally put me on for three and a half hours, and I called them out on it at 3 hours and five minutes. Unfortunately that meant that I officially didn't have the full amount taken off. So I went into my next treatment a little heavier than normal. I asked them to take off a little more than normal but didn't want to push for too much... the more they take... the more intense my head ache experience can be (although my recent headaches have been quite manageable compared to those I was having prior to the increased treatments). Then the weekend came, where I go one day longer without a treatment... and man did I feel it.
I woke up Monday morning with very short breaths as my lungs had filled with fluid. I recognized the feeling from when I had spent the night in the hospital last month. As I tried to do anything active I became weak and incapable of getting much done at all... including a simple walk downtown (three blocks from my house) and a little work in the yard as we attempted to plant some tomatoes. I could watch... but the actual work made me weak and forced me to sit. And on my walk downtown I had to be picked up by car... I couldn't make it home.
I walked across Massachusetts in 2008 and today if my fluid builds up I can't walk 6 blocks.
On Monday they took 4 kilograms off of me. That's almost 9 lbs of fluid and that's after having a treatment only three days earlier. Clearly the honeymoon is over.
My name is Bil... and I have kidney disease.
Wednesday, June 1, 2016
Sunday, May 1, 2016
An Ode to Sleep
Sleep. In 2008 you began your departure from my world. It was slow at first with your once a week visits of head aches and vomiting, but gradually you visited upon me countless nights of torturous hours of these headaches and an ever increasing need to pee, sometimes 5 times a night, draining me of my energy, my vibrance, my joie de vivre.
I remember you though. I recall the joy of a full night of sleep and the rewards of having the energy to do anything, including 80 hour work weeks and 10 day hikes through the woods of Massachusetts. Sleep has always come easy to me, even in the bad years but a full night of sleep is a long ago memory.
Two weeks ago I developed a cough. I also noticed I couldn't breath as deeply as I usually can. I mentioned it at a dialysis session and they set me up for a chest x-ray. That was a Wednesday night, Thursday my nephrologist called to let me know that I had some fluid in my lungs and that she wanted to increase the amount of fluid they pull off of me from a half KG to two KGs. Meanwhile I was coughing and she asked about the cough and I mentioned that was the reason I even started discussing my symptoms with the dialysis clinic and she said it almost sounded like pneumonia.
The seed of pneumonia planted I called my PCP and scheduled an appointment for Friday prior to my dialysis treatment. My PCP couldn't specifically say that I had pneumonia but she was more worried that as a kidney disease patient I might have congestive heart failure. She said the only way to know was to send me immediately to the ER. She called ahead to let them know I was coming and what she expected them to do.
ER visits being what they are, never quick and simple, meant that for the next few hours when I should have been receiving me dialysis treatment I was instead being hooked to electrodes and having blood samples drawn, nitroglycerin patches on my shoulder and oxygen in my nose. Ultimately they determined that I had neither pneumonia or congestive heart failure, but just had excessive fluid. And of course since I still needed to dialize, they decided to keep me over night and dialize me in the hospital.
The nitroglycerin gave me a serious headache which ultimately led to vomiting. The hospital didn't dialize me until 10:00 PM... all I wanted was to sleep but couldn't for the headache not to mention the constant visits from nurses wanting to check my blood pressure or my breathing or some other vital sign. Turning on the lights making noises keeping me awake until finally 10:00 pm came and they brought me to the dialysis room.
Within 10 minutes of being hooked to the machine I fell asleep from pure exhaustion. I awoke as they were pulling me off the machine three hours and three and half KGs later. No headache. Breathing normal. Feeling somewhat rested. They brought me back to my room and I peed just once all night. It was an amazing night of sleep.
All of my treatments since that night have including taking a minimum of two KGs off of me, and up to three KGs. No more head aches and vomiting. No more peeing 5 times per night... just once or twice. Just nights of sleep.
Sleep. You have returned to me. For eight long years I have been missing you. I do hope you've returned for good. I so appreciate your night long embrace. If you leave me again.. these days will certainly be cherished and remembered as the days you came back... at least for a short while. And while I have you I will sleep you long and deep for as many nights as I can hold you.
My name is Bil... and I have kidney disease
I remember you though. I recall the joy of a full night of sleep and the rewards of having the energy to do anything, including 80 hour work weeks and 10 day hikes through the woods of Massachusetts. Sleep has always come easy to me, even in the bad years but a full night of sleep is a long ago memory.
Two weeks ago I developed a cough. I also noticed I couldn't breath as deeply as I usually can. I mentioned it at a dialysis session and they set me up for a chest x-ray. That was a Wednesday night, Thursday my nephrologist called to let me know that I had some fluid in my lungs and that she wanted to increase the amount of fluid they pull off of me from a half KG to two KGs. Meanwhile I was coughing and she asked about the cough and I mentioned that was the reason I even started discussing my symptoms with the dialysis clinic and she said it almost sounded like pneumonia.
The seed of pneumonia planted I called my PCP and scheduled an appointment for Friday prior to my dialysis treatment. My PCP couldn't specifically say that I had pneumonia but she was more worried that as a kidney disease patient I might have congestive heart failure. She said the only way to know was to send me immediately to the ER. She called ahead to let them know I was coming and what she expected them to do.
ER visits being what they are, never quick and simple, meant that for the next few hours when I should have been receiving me dialysis treatment I was instead being hooked to electrodes and having blood samples drawn, nitroglycerin patches on my shoulder and oxygen in my nose. Ultimately they determined that I had neither pneumonia or congestive heart failure, but just had excessive fluid. And of course since I still needed to dialize, they decided to keep me over night and dialize me in the hospital.
The nitroglycerin gave me a serious headache which ultimately led to vomiting. The hospital didn't dialize me until 10:00 PM... all I wanted was to sleep but couldn't for the headache not to mention the constant visits from nurses wanting to check my blood pressure or my breathing or some other vital sign. Turning on the lights making noises keeping me awake until finally 10:00 pm came and they brought me to the dialysis room.
Within 10 minutes of being hooked to the machine I fell asleep from pure exhaustion. I awoke as they were pulling me off the machine three hours and three and half KGs later. No headache. Breathing normal. Feeling somewhat rested. They brought me back to my room and I peed just once all night. It was an amazing night of sleep.
All of my treatments since that night have including taking a minimum of two KGs off of me, and up to three KGs. No more head aches and vomiting. No more peeing 5 times per night... just once or twice. Just nights of sleep.
Sleep. You have returned to me. For eight long years I have been missing you. I do hope you've returned for good. I so appreciate your night long embrace. If you leave me again.. these days will certainly be cherished and remembered as the days you came back... at least for a short while. And while I have you I will sleep you long and deep for as many nights as I can hold you.
My name is Bil... and I have kidney disease
Sunday, March 13, 2016
A quandry
As I approach the end of my third year on dialysis I face a quality of life conundrum. The typical end stage renal disease patient dialyzes three times per week, but my general good health has allowed me to dialyze only twice a week and maintain my numbers. Sometimes I hover on the dangerous edge of the numbers, but I generally keep things in check. In recent weeks I've seen a few of my numbers climb a bit, a sign that perhaps my twice a week treatments are no longer enough to truly keep me safe. What does that mean exactly? In the worse case scenario it means I run the risk of a stroke and death, on the lesser side it means perhaps if I keep this up for a long time I could do damage to my body that will have future impacts on my overall health.
A month or so ago I had received a letter from MGH informing me that as a resident of Massachusetts with type A blood on average I can expect a transplant sometime between the end of my third year and the end of my fourth year. Now there's no guarantee that this will be true... it's just an average scenario. Still I think it's fair to assume that my time on dialysis is winding down and hopefully I have less time ahead of me than behind me.
I've always had issues following a treatment. About two hours after every treatment I get a headache. I usually just go to bed and do my best to sleep it off. Then I awake on the following day feeling like I'm made of straw... I feel dry and brittle. I feel hungry in a way that I can't seem to satisfy, but simultaneously most foods don't sound very appealing to me. In the last 6 to 8 weeks there's been a change in my post treatment issues. The headaches have moved to a new extreme and I'm vomiting in the middle of the night. I don't sleep well and I struggle to get up the next day.
My dialysis center team has been suggesting that perhaps I ought to try going back to three times per week. I've been stubborn about the suggestion and quite frankly haven't been willing to believe that adding back a treatment each week would resolve the problem. In my mind it would mean one more night of getting sick and one more day of feeling like straw. Who in their right mind would want that?
But in an effort to prove to my center that the additional treatment each week isn't the solution I agreed to have an extra treatment last week. Then prepared for a miserable Wednesday evening and less than wonderful Thursday. But my Wednesday came and went with minimal issue and my Thursday was not as difficult as my recent Tuesdays and Saturdays. This was unexpected. I assumed it was a fluke and that Friday I would return to business as usual. But again Friday's treatment was my first in weeks with minimal issue.
So I'm finding it hard to argue with my center and my doctor that three treatments per week would be better all around. But this creates a new concern. Leaving early from work on Mondays and Fridays impacts my weekly income. Adding Wednesdays will hurt financially. Also that I'm not vomiting doesn't mean I'm not still dealing with headaches and the straw feeling.... so I'll be adding a day each week of feeling less than great in place of two nights of pure misery... neither is acceptable but those are my choices.
People will say, "well, can't you work longer hours on the days that you don't leave early?" To which I reply... why should I be required to? Am I not working hard enough by attempting to put in as many hours as I can while also trying to maintain my 8 hours of treatment (and would be 12 hours) each week. Or perhaps they would suggest that I dialyze later on my treatment days so I can work more hours... and that means I get home later at night and don't eat diner with my family. You see it's a quality of life thing. What part of my life am I willing to give up so I can live long enough to get a transplant?
And even as I type this I have no idea what to expect on Monday night. The two days between Friday and Monday will still be there if I go three times per week... will I still get the extreme headache on Monday nights? So now my weeks will include one night of misery and two less than great nights and three days of feeling like straw?
Folks, I haven't even begun to talk about the financial stress of having recently been forced onto medicare as my primary health care. But that sounds like a topic for another day.
My name is Bil... and I have kidney disease.
A month or so ago I had received a letter from MGH informing me that as a resident of Massachusetts with type A blood on average I can expect a transplant sometime between the end of my third year and the end of my fourth year. Now there's no guarantee that this will be true... it's just an average scenario. Still I think it's fair to assume that my time on dialysis is winding down and hopefully I have less time ahead of me than behind me.
I've always had issues following a treatment. About two hours after every treatment I get a headache. I usually just go to bed and do my best to sleep it off. Then I awake on the following day feeling like I'm made of straw... I feel dry and brittle. I feel hungry in a way that I can't seem to satisfy, but simultaneously most foods don't sound very appealing to me. In the last 6 to 8 weeks there's been a change in my post treatment issues. The headaches have moved to a new extreme and I'm vomiting in the middle of the night. I don't sleep well and I struggle to get up the next day.
My dialysis center team has been suggesting that perhaps I ought to try going back to three times per week. I've been stubborn about the suggestion and quite frankly haven't been willing to believe that adding back a treatment each week would resolve the problem. In my mind it would mean one more night of getting sick and one more day of feeling like straw. Who in their right mind would want that?
But in an effort to prove to my center that the additional treatment each week isn't the solution I agreed to have an extra treatment last week. Then prepared for a miserable Wednesday evening and less than wonderful Thursday. But my Wednesday came and went with minimal issue and my Thursday was not as difficult as my recent Tuesdays and Saturdays. This was unexpected. I assumed it was a fluke and that Friday I would return to business as usual. But again Friday's treatment was my first in weeks with minimal issue.
So I'm finding it hard to argue with my center and my doctor that three treatments per week would be better all around. But this creates a new concern. Leaving early from work on Mondays and Fridays impacts my weekly income. Adding Wednesdays will hurt financially. Also that I'm not vomiting doesn't mean I'm not still dealing with headaches and the straw feeling.... so I'll be adding a day each week of feeling less than great in place of two nights of pure misery... neither is acceptable but those are my choices.
People will say, "well, can't you work longer hours on the days that you don't leave early?" To which I reply... why should I be required to? Am I not working hard enough by attempting to put in as many hours as I can while also trying to maintain my 8 hours of treatment (and would be 12 hours) each week. Or perhaps they would suggest that I dialyze later on my treatment days so I can work more hours... and that means I get home later at night and don't eat diner with my family. You see it's a quality of life thing. What part of my life am I willing to give up so I can live long enough to get a transplant?
And even as I type this I have no idea what to expect on Monday night. The two days between Friday and Monday will still be there if I go three times per week... will I still get the extreme headache on Monday nights? So now my weeks will include one night of misery and two less than great nights and three days of feeling like straw?
Folks, I haven't even begun to talk about the financial stress of having recently been forced onto medicare as my primary health care. But that sounds like a topic for another day.
My name is Bil... and I have kidney disease.
Tuesday, September 8, 2015
Trial & Error... Still Learning.
All in all dialysis is not a bad gig when you think about the alternative. You give up 12 hours of your week (in my case 8 hours) and in return you get to live. Who wouldn't choose life? I choose life every time.
I've been on the machine now for a little over two years and along with the 8 hours I give up each week I also have come to accept that following each session I will have a terrible head ache and will wake up the following morning with the sensation of having a mild hangover. Not fun, but still... life. I always choose life.
Recently I was on vacation. We took a little road trip through Connecticut and New York. I scheduled two sessions throughout my vacation so as to not risk feeling sick. I probably could have skipped and been fine, but why risk it, right?
For the most part these visit went swimmingly. In CT they were unaware of my special dialyser... oh wait... I forgot to tell you about my special dialyser. Let me back step for a minute:
When I first went on dialysis I was experiencing this sensation of losing my breath (imagine stepping into a freezing cold shower) every time the process started. After a few minutes it would go away. I had mentioned it to the staff and my nephrologist and they thought that was unusual so they tried a different dialyser (A dialyser is just a filter and it looks like the same kind of filter you might have in your house if you have a water purifier system). The new dialyser prevented that sensation so it was decided that I was allergic to the "normal" dialyser. Back to CT.
So as I inquired about their use of the special dialyser they didn't seem to know anything about it. I called back to my center and the manager there told the center I was at the name of the dialyser and so they reset the machine with that dialyser and I was off and dialysing... 45 minutes later than planned, but no harm no foul.
In upstate NY I asked the same thing... "You have my special dialyser, right?" They didn't seem to know anything about it. Again I called my center and they gave the name of the dialyser. This time the center in NY said "oh, well that's what we use on every machine." I looked around the room and could see that every dialyser was exactly the same as every dialyser back in Newburyport but mine. I know mine because it has a blue top and the "normal" dialyser has a dark grey top. I was unwilling to argue with them, I decided to just suck it up and let them use the normal dialyser.
I asked them to only take 0.5KG off of me and they were fine with that, my numbers suggested I could actually afford to have less. The session went fine until the very end as they were about to take me off the machine and I started cramping. This is very unusual for me unless they take too much off me. Turns out the woman messed up and somehow set the machine to take 3KG off of me instead of 0.5KG. Yikes!
Usually this would have had me pass out, I can't even explain why I wasn't half dead in the chair. But more importantly... I wasn't even slightly headachey. what was that all about? I always get a headache and the more they take off of me the more headachey I get... WTF is going on here?
I've been pondering this since it all went down. the only difference was the dialyser and the fact that they took too much off me. Taking too much off of me should have made me exceptionally headachey. why didn't it? It had to be the farquing dialyser.
I mentioned it to my center when I got home and the manager told me it couldn't be the dialyser.. the only difference between them was the method of sterilizing, otherwise they are exactly the same. They continued to use the special dialyser and I continued to get headaches.
Last week I saw my Nephrologist for the first time since returning from vacation. I told her the story and she agreed that we should at least test the theory. Last night for the first time we tried the "normal" dialyser. I came home headache free. I slept like a baby.
I can't call it science yet, but I suspect that this will be true on Friday of this week too. I'll keep you informed on how it all turns out.
My name is Bil... and I have kidney disease.
I've been on the machine now for a little over two years and along with the 8 hours I give up each week I also have come to accept that following each session I will have a terrible head ache and will wake up the following morning with the sensation of having a mild hangover. Not fun, but still... life. I always choose life.
Recently I was on vacation. We took a little road trip through Connecticut and New York. I scheduled two sessions throughout my vacation so as to not risk feeling sick. I probably could have skipped and been fine, but why risk it, right?For the most part these visit went swimmingly. In CT they were unaware of my special dialyser... oh wait... I forgot to tell you about my special dialyser. Let me back step for a minute:
When I first went on dialysis I was experiencing this sensation of losing my breath (imagine stepping into a freezing cold shower) every time the process started. After a few minutes it would go away. I had mentioned it to the staff and my nephrologist and they thought that was unusual so they tried a different dialyser (A dialyser is just a filter and it looks like the same kind of filter you might have in your house if you have a water purifier system). The new dialyser prevented that sensation so it was decided that I was allergic to the "normal" dialyser. Back to CT.
So as I inquired about their use of the special dialyser they didn't seem to know anything about it. I called back to my center and the manager there told the center I was at the name of the dialyser and so they reset the machine with that dialyser and I was off and dialysing... 45 minutes later than planned, but no harm no foul.
In upstate NY I asked the same thing... "You have my special dialyser, right?" They didn't seem to know anything about it. Again I called my center and they gave the name of the dialyser. This time the center in NY said "oh, well that's what we use on every machine." I looked around the room and could see that every dialyser was exactly the same as every dialyser back in Newburyport but mine. I know mine because it has a blue top and the "normal" dialyser has a dark grey top. I was unwilling to argue with them, I decided to just suck it up and let them use the normal dialyser.I asked them to only take 0.5KG off of me and they were fine with that, my numbers suggested I could actually afford to have less. The session went fine until the very end as they were about to take me off the machine and I started cramping. This is very unusual for me unless they take too much off me. Turns out the woman messed up and somehow set the machine to take 3KG off of me instead of 0.5KG. Yikes!
Usually this would have had me pass out, I can't even explain why I wasn't half dead in the chair. But more importantly... I wasn't even slightly headachey. what was that all about? I always get a headache and the more they take off of me the more headachey I get... WTF is going on here?
I've been pondering this since it all went down. the only difference was the dialyser and the fact that they took too much off me. Taking too much off of me should have made me exceptionally headachey. why didn't it? It had to be the farquing dialyser.
I mentioned it to my center when I got home and the manager told me it couldn't be the dialyser.. the only difference between them was the method of sterilizing, otherwise they are exactly the same. They continued to use the special dialyser and I continued to get headaches.
Last week I saw my Nephrologist for the first time since returning from vacation. I told her the story and she agreed that we should at least test the theory. Last night for the first time we tried the "normal" dialyser. I came home headache free. I slept like a baby.
I can't call it science yet, but I suspect that this will be true on Friday of this week too. I'll keep you informed on how it all turns out.
My name is Bil... and I have kidney disease.
Thursday, September 3, 2015
2 years and 137 days
Mass General Hospital has taken a very hands off approach to my kidney disease. When I was with Lahey Clinic I would get regular phone calls from my coordinator. MGH never calls me, unless I call them or email them first. I'm not saying this is a bad thing... I'm just mentioning it.
When I first moved my care over to MGH they did a full work up on me. Based on what I had heard from the coordinator at Lahey and from my nephrologist I should have expected one of these work ups annually. When I hadn't heard from them by fall of 2014 I had decided to contact them in December to ask if I should be coming in for my annual visit. I was told at that time that MGH had changed their process relative to the typical transplant centers and only asked their clients to come in every two years. So I was to expect an appointment sometime in the summer of 2015 to re-evaluate my condition.
All summer I've been anticipating a phone call or letter from MGH asking me to come in for a full work up and re-evaluation. This week I decided it was time for me to make the first move and contact them. I sent an email to my coordinator and she called back about 20 minutes later.
MGH has once again changed their process. Now they estimate your transplant and don't have you come in until approx one year before estimated time of transplant. In my case being of blood type A in Massachusetts the average wait time is approx 4 years. I've been on the wait list for 2 years and 137 days (2 years and 139 days on the day I'm writing this). So in about 6 to 8 months I should be called in for the workup (assuming the average wait time doesn't change to 5 years).
This is actually the first time I've really had any inkling of an idea about when to expect a transplant. In a little over a year and a half I should be somewhere near the top of the list. Its kind of nice to know that. I can now work out how many more times I'll be able to enjoy eating sushi... an important thing to know when you love to eat sushi and know that after a transplant you aren't supposed to eat it.
I'm also not a guy who likes exercise... I'm just too darn lazy to make time for it. Hey! At least I'm owning that. But having recently turned 50 and knowing that surviving an operation like a kidney transplant can often depend on your physical health, I often ponder when I should start taking my lack of exercise a little more seriously so I'm prepared for the operation. I mean why exercise for a year and a half if I really only need about 6 months to get my 190 Lbs of twisted steel and sex appeal back into shape? Clearly I'm putting off the inevitable.
Knowing that I've been on the list for 2 years and 137 days allowed me to also estimate the number of needles I've had poked into my arm. I'm somewhere up in the vicinity of 520 and there's a path of tiny needle scars from my wrist to halfway to my elbow as evidence. A sort of history of my days on dialysis. A calendar if you will. Notches in my lipstick case... only its my skin.
Somehow this knowing about the approx 4 years has given me a sense of direction and purpose. A goal to actually aim for. Being over the half way mark upon finding this out is also a favorable place to be. I theoretically have less time left than the amount I've invested. That is a good feeling. Like taking a loan out on a car and being more than halfway to having it paid off.
That's pretty much all I have for today.
My name is Bil... and I have kidney disease.
When I first moved my care over to MGH they did a full work up on me. Based on what I had heard from the coordinator at Lahey and from my nephrologist I should have expected one of these work ups annually. When I hadn't heard from them by fall of 2014 I had decided to contact them in December to ask if I should be coming in for my annual visit. I was told at that time that MGH had changed their process relative to the typical transplant centers and only asked their clients to come in every two years. So I was to expect an appointment sometime in the summer of 2015 to re-evaluate my condition.
All summer I've been anticipating a phone call or letter from MGH asking me to come in for a full work up and re-evaluation. This week I decided it was time for me to make the first move and contact them. I sent an email to my coordinator and she called back about 20 minutes later.
MGH has once again changed their process. Now they estimate your transplant and don't have you come in until approx one year before estimated time of transplant. In my case being of blood type A in Massachusetts the average wait time is approx 4 years. I've been on the wait list for 2 years and 137 days (2 years and 139 days on the day I'm writing this). So in about 6 to 8 months I should be called in for the workup (assuming the average wait time doesn't change to 5 years).
This is actually the first time I've really had any inkling of an idea about when to expect a transplant. In a little over a year and a half I should be somewhere near the top of the list. Its kind of nice to know that. I can now work out how many more times I'll be able to enjoy eating sushi... an important thing to know when you love to eat sushi and know that after a transplant you aren't supposed to eat it.
I'm also not a guy who likes exercise... I'm just too darn lazy to make time for it. Hey! At least I'm owning that. But having recently turned 50 and knowing that surviving an operation like a kidney transplant can often depend on your physical health, I often ponder when I should start taking my lack of exercise a little more seriously so I'm prepared for the operation. I mean why exercise for a year and a half if I really only need about 6 months to get my 190 Lbs of twisted steel and sex appeal back into shape? Clearly I'm putting off the inevitable.
Knowing that I've been on the list for 2 years and 137 days allowed me to also estimate the number of needles I've had poked into my arm. I'm somewhere up in the vicinity of 520 and there's a path of tiny needle scars from my wrist to halfway to my elbow as evidence. A sort of history of my days on dialysis. A calendar if you will. Notches in my lipstick case... only its my skin.
Somehow this knowing about the approx 4 years has given me a sense of direction and purpose. A goal to actually aim for. Being over the half way mark upon finding this out is also a favorable place to be. I theoretically have less time left than the amount I've invested. That is a good feeling. Like taking a loan out on a car and being more than halfway to having it paid off.
That's pretty much all I have for today.
My name is Bil... and I have kidney disease.
Wednesday, July 29, 2015
For Veronica Wherever She May Be
How easy it is for a year to fly by and without a blog post in almost 11 months. As dialysis has become such a normal part of my world and my kidney disease about as scary as clipping my fingernails, I have less and less to say about it and the overall experience. I suppose I wish there was some great news to share like I'm on my way to the hospital for a new kidney, but realistically its only been two years on dialysis. Here in Massachusetts it takes three to six years before you receive a cadaver kidney so I've got a minimum of one year and more like two to four more years of dialysis before my name creeps to the top of the list.
I remain generally healthy. I am now a full year in on my twice a week treatments as opposed to three times per week. My quality of life greatly improved with only going twice per week and my general health seemed to increase as well. dialysis is wearying. Who wouldn't want to go less than three times per week. In fact I recently asked my nephrologist if we could try something else new.
I asked her if we could try three times per two weeks on a schedule of Monday, Friday of week one and Wednesday of week two. She had to sit down and wipe the sweat from her brow at the very thought. In her mind like most humans time passes by in seven day cycles. To her the second week would mean only one dialysis session in a week. The thought made her nervous. For me time is linear and continuously moving forward. So I only see a pattern of dialysis, then three days off, then dialysis, then four days off, then dialysis, then four days off and the pattern repeats. In her version, one dialysis session in week two sounds like a big deal, but in the end its still only 4 days between sessions as opposed to the three days I go through now.
I'm still working on that with her, but there's a bigger problem than just convincing her. The dialysis clinic in the end is in the business to make money. That I don't go on Wednesdays anymore is already costing them money. It's not like they can fill my spot on Wednesday, nobody goes once a week. imagine if I threw this wacky schedule into the mix of not showing up on Wednesdays of week one and then only showing up Wednesdays of week two. They would essentially be earning the income of minus one patient each month relative to their full capacity. So they will never allow this. Perhaps they would have a year ago when I was only one of two or three regular patients on the third shift, but over the past year another local clinic closed and our clinic picked up many new patients and has a full plate of regulars. So I would almost need to find a struggling center and start going there.
Then there's the whole insurance industry to deal with. I've been told they would never pay for my dialysis unless I went at least twice a week. This sounds a little odd to me since my schedule of three times every two weeks would mean less cost to them. But that is a bridge I'll need to cross if and when I convince my nephrologist to go along with this new schedule and then also find a local enough clinic to take me on as a patient.
My name is Bil... and I have kidney disease (not that you care)
I remain generally healthy. I am now a full year in on my twice a week treatments as opposed to three times per week. My quality of life greatly improved with only going twice per week and my general health seemed to increase as well. dialysis is wearying. Who wouldn't want to go less than three times per week. In fact I recently asked my nephrologist if we could try something else new.
I asked her if we could try three times per two weeks on a schedule of Monday, Friday of week one and Wednesday of week two. She had to sit down and wipe the sweat from her brow at the very thought. In her mind like most humans time passes by in seven day cycles. To her the second week would mean only one dialysis session in a week. The thought made her nervous. For me time is linear and continuously moving forward. So I only see a pattern of dialysis, then three days off, then dialysis, then four days off, then dialysis, then four days off and the pattern repeats. In her version, one dialysis session in week two sounds like a big deal, but in the end its still only 4 days between sessions as opposed to the three days I go through now.
I'm still working on that with her, but there's a bigger problem than just convincing her. The dialysis clinic in the end is in the business to make money. That I don't go on Wednesdays anymore is already costing them money. It's not like they can fill my spot on Wednesday, nobody goes once a week. imagine if I threw this wacky schedule into the mix of not showing up on Wednesdays of week one and then only showing up Wednesdays of week two. They would essentially be earning the income of minus one patient each month relative to their full capacity. So they will never allow this. Perhaps they would have a year ago when I was only one of two or three regular patients on the third shift, but over the past year another local clinic closed and our clinic picked up many new patients and has a full plate of regulars. So I would almost need to find a struggling center and start going there.
Then there's the whole insurance industry to deal with. I've been told they would never pay for my dialysis unless I went at least twice a week. This sounds a little odd to me since my schedule of three times every two weeks would mean less cost to them. But that is a bridge I'll need to cross if and when I convince my nephrologist to go along with this new schedule and then also find a local enough clinic to take me on as a patient.
My name is Bil... and I have kidney disease (not that you care)
Sunday, September 7, 2014
updates from the trooper
So in June I went to Florida for a short trip on a random Friday through the following Tuesday. During this trip I should have scheduled a dialysis treatment for Monday... but being the stubborn person I am I decided to skip the Monday treatment and just wait until Wednesday. I never felt worse for skipping that treatment and since starting dialysis that was the longest I had ever gone without a treatment. I had always suspected that while the standard dialysis schedule includes three visits per week that I could probably get by fine on only two visits per week. Upon return from my trip I asked my nephrologist to allow me to run a trial of only two visits per week and she reluctantly agreed to let me.
I've since run on two visits per week for several weeks. Every month I have blood drawn and a report card based on that blood work to let me know how my health is. My first report has been for all intents and purposes exactly the same as it has been over the past year. So I now have the blessing of my nephrologist to continue with the twice a week visits.
While I've only gained back one day without dialysis its amazing how much better I feel all around for the change. I generally feel a little crappy about two hours after a treatment and I always find it harder to get out of bed on the mornings following a treatment... but now having removed a night of feeling crappy and a morning of the struggle to get out of bed I've given myself a little bit of my life back... and that in itself feeds my appreciation of the good life that I have.
I also have to mention that I've pondered the possibility of NOT getting a kidney transplant. I haven't spoken about this to anyone until just this week. There's a social worker at the dialysis center and once every few months she along with the various members of the staff are required to sit with me to discuss my health from every aspect. It was supposed to happen this week but due to someone forgetting to tell my nephrologist it didn't happen, but my social worker was there and decided to chat with me anyway. While we were talking I had for the first time revealed this thought of not getting a transplant.
You've heard it said that sometimes you need to be thankful for the things you didn't get. When this all started I only wanted to avoid dialysis and to receive a donor kidney as soon as possible. Upon starting dialysis I had hoped that a donor would be found before I had a chance to come off the catheter and start using the fistula. Alas very few donors actually made it far enough to even seriously be considered and the ones that were, were all ultimately eliminated for various reasons.
Initially this was a somewhat depressing reality... not that I'm one to ever really get down and feel woeful for my situation, still when you have a goal and fail to realize that goal it can get you down a bit. But I'm a trooper, right? "I never complain" as my wife will often say. Complain about what I think to myself... that I'm lucky enough to have a disease that won't kill me quickly or painfully... that I'm lucky enough to live in a time when I can simply receive dialysis treatments to keep myself alive considerably longer than I would have had their been no such thing? Should I complain that I'm one of the healthiest people on dialysis... so healthy in fact that I can get away with two visits per week instead of three. Should I complain about the procedures that have installed the catheter and the one that set up my fistula? I know a gal who had real problems with her fistula and had a catheter much longer than I did... I have nothing to complain about (Reezie you're the trooper... hang in there my friend).
But here I am a little over a year after starting dialysis, I feel healthy... all things considered, and I don't feel as though I really have any restrictions on life so long as I keep up my treatments, which of course I will do because if I don't I'll have about three weeks to live. So do I have anything to complain about? Yes!
I can complain about the fact that getting a transplant is going to disrupt my life. First there's just the recovery... about 6-8 weeks. Then there's the countless meds I'll be on... most of which will be the wrong med or the wrong dosage at first and only trial and error will resolve the issues along with a few potential hospitalizations as we deal with the process of figuring out the right med treatment for my personal situation. Ultimately I'll wean off of certain meds and find a regular regimen of prescriptions to keep me alive and to prevent my body from rejecting the transplanted kidney. But these will also leave me in a constant state of immunodeficiency not to mention that my diet will have restrictions including not eating sushi, which just happens to be my favorite food to eat.
So... do I really want a transplant? Yes... but I'm in no rush to get one because my life is pretty good right now without all of that trouble. And while dialysis itself is only good for so long and will have its own effect on my body... I am somewhat thankful that being on the donor list means I'll probably get three to five more years of this version of life before I have to give it all up for the one described above.
My name is Bil... and I have kidney disease
I've since run on two visits per week for several weeks. Every month I have blood drawn and a report card based on that blood work to let me know how my health is. My first report has been for all intents and purposes exactly the same as it has been over the past year. So I now have the blessing of my nephrologist to continue with the twice a week visits.
While I've only gained back one day without dialysis its amazing how much better I feel all around for the change. I generally feel a little crappy about two hours after a treatment and I always find it harder to get out of bed on the mornings following a treatment... but now having removed a night of feeling crappy and a morning of the struggle to get out of bed I've given myself a little bit of my life back... and that in itself feeds my appreciation of the good life that I have.
I also have to mention that I've pondered the possibility of NOT getting a kidney transplant. I haven't spoken about this to anyone until just this week. There's a social worker at the dialysis center and once every few months she along with the various members of the staff are required to sit with me to discuss my health from every aspect. It was supposed to happen this week but due to someone forgetting to tell my nephrologist it didn't happen, but my social worker was there and decided to chat with me anyway. While we were talking I had for the first time revealed this thought of not getting a transplant.
You've heard it said that sometimes you need to be thankful for the things you didn't get. When this all started I only wanted to avoid dialysis and to receive a donor kidney as soon as possible. Upon starting dialysis I had hoped that a donor would be found before I had a chance to come off the catheter and start using the fistula. Alas very few donors actually made it far enough to even seriously be considered and the ones that were, were all ultimately eliminated for various reasons.
Initially this was a somewhat depressing reality... not that I'm one to ever really get down and feel woeful for my situation, still when you have a goal and fail to realize that goal it can get you down a bit. But I'm a trooper, right? "I never complain" as my wife will often say. Complain about what I think to myself... that I'm lucky enough to have a disease that won't kill me quickly or painfully... that I'm lucky enough to live in a time when I can simply receive dialysis treatments to keep myself alive considerably longer than I would have had their been no such thing? Should I complain that I'm one of the healthiest people on dialysis... so healthy in fact that I can get away with two visits per week instead of three. Should I complain about the procedures that have installed the catheter and the one that set up my fistula? I know a gal who had real problems with her fistula and had a catheter much longer than I did... I have nothing to complain about (Reezie you're the trooper... hang in there my friend).
But here I am a little over a year after starting dialysis, I feel healthy... all things considered, and I don't feel as though I really have any restrictions on life so long as I keep up my treatments, which of course I will do because if I don't I'll have about three weeks to live. So do I have anything to complain about? Yes!
I can complain about the fact that getting a transplant is going to disrupt my life. First there's just the recovery... about 6-8 weeks. Then there's the countless meds I'll be on... most of which will be the wrong med or the wrong dosage at first and only trial and error will resolve the issues along with a few potential hospitalizations as we deal with the process of figuring out the right med treatment for my personal situation. Ultimately I'll wean off of certain meds and find a regular regimen of prescriptions to keep me alive and to prevent my body from rejecting the transplanted kidney. But these will also leave me in a constant state of immunodeficiency not to mention that my diet will have restrictions including not eating sushi, which just happens to be my favorite food to eat.
So... do I really want a transplant? Yes... but I'm in no rush to get one because my life is pretty good right now without all of that trouble. And while dialysis itself is only good for so long and will have its own effect on my body... I am somewhat thankful that being on the donor list means I'll probably get three to five more years of this version of life before I have to give it all up for the one described above.
My name is Bil... and I have kidney disease
Friday, May 30, 2014
Anniversaryization of a thing
Today/tomorrow is the year anniversary since I started dialysis. To be honest I was pretty darned scared about the whole thing... the procedure to install the catheter... the first treatment a year ago this morning... the first week of dialysis at the center in Newburyport... the procedure a week later to create the fistula in my left arm... and the multiple trips to the emergency rooms in the middle of the night over those first few months as I had multiple bleeding issues.
Today its all routine. Almost too routine. Should I be this comfortable with leaving work early three days per week? Should I be this comfortable with two size 15 needles being poked through my ever toughening and scarred skin each session? Should I be this comfortable with my blood being pumped out of my body through a machine that filters the toxins that my kidneys no longer remove? Should I be this comfortable with essentially living life always approximately three weeks away from death?
I maintain a love hate relationship with dialysis. Life is life and I can't argue that dialysis makes this all possible for me. But I know too that dialysis is not a permanent solution and will eventually contribute to the ultimate decline of my health.
I don't mean to sound like a conspiracy theorist but I also struggle with the true intentions of the company that runs the dialysis center. I'm not convinced that they always have my personal interests in mind as they focus on their profits. As a relatively healthy 48 year old man I often wonder if I would be better served from fewer treatments than the traditional 3 days per week. But two treatments per week would cost the company 20 to 30 thousand dollars a year of lost revenue.
A final thought on this anniversary is all of the time I've wasted this past year. Time spent sleeping, watching movies, listening to old 80's music and playing bad computer games like pyramid solitaire. I would like to be more productive with this time and turn it into a gift.. but I'm so lazy... so I can't commit to doing any better in year two than I have done in year one.
Well.. raise your ice teas with me as I drink to another year on dialysis.
My name is Bil... and I still have kidney disease and no prospects for a living donor.
Friday, February 14, 2014
Be my Valentine... its Valentines day afterall
Valentines Day 2014.
Just over a month ago I asked you to "have a heart... donate a kidney" complete with cute photography work showing me holding the same red heart in the location of my own heart and the approx location of where your kidney will end up inside of me if I get your kidney. This was a call to action post meant to move you... inspire you... make you laugh a little... make you think a little... make you want to give up one of your kidneys so I can see another 20 years of life.
I failed.
In the month that has passed only two new inquiries have come in and I happen to know that one of those came by way of word of mouth through high school friends and not through my call to action email. I know several of my closest friends and family have rallied on my behalf and spread the word and some have even attempted to be that person whose kidney keeps me living. It isn't an easy process and the chances are that you are more likely to be disqualified for a handful of reasons including age, weight, smoking, and a slew of other more unique situations that I won't talk about here as they would be considered private.
You don't know that my goal on that day was to shake out 6 people who would be willing candidates because I'm usually not that specific about my intentions... I like to keep it vague. But today I'm coming at you all from a different angle. I want you to know what's going on in my mind. You see it takes about 2 months for the transplant center to run the course with each new potential candidate. So six new candidates means I don't have to bug you all for about a year while they slowly eliminate everyone from this group of six. Unless of course one of these six happens to be a match... in which case hooray for me... I get a new kidney and another shot at living a full life.
Did you know that if it wasn't for my kidney disease I would be a perfectly healthy 48 year old man? I'm very unlike most kidney disease patients in that respect. Most of the folks I see with kidney disease have it as a secondary ailment. Usually they had diabetes first. Several of them are in their 70's and 80's and have already seen their children grow up and go through college and start careers and get married and have children... and that is really all we can truly hope for in life isn't it? The rest is all gravy. The vacations, the toys, the celebrations... they're all part of the fun but none of it compares to the joy of watching our children succeeding in their own ways.
Now I don't mean to suggest that those folks with other disease or who have already had relatively full lives don't deserve new kidneys as much as I do... but I do have so much to live for and so many years ahead of me and quite honestly I'm not going to make it without you.
That's what I want you to think about today. I'm not going to make it without you.
I'm not going to make it with out you.
Without you I won't see Amber marry the man of her dreams and have children.
Without you I won't see Charly graduate from high school and become the famous rap star that he thinks he wants to be (yes my 14 year old son fancies himself a rapper and I have to admit he's pretty good at it).
Without you I won't see my little princess attend her high school prom (does it help you to know that I just burst into tears as I wrote that). I won't witness her experience a broken heart. I won't see her go off to college and eventually meet the man of her dreams and marry and have children.
Without you I am nothing more than a human pin cushion (thanks for that visual Rita Stone) sitting in a dialysis chair for four hours, three days a week so I can stay alive long enough to hopefully find a donor and receive the kidney that buys me another chance.
I know its a selfish request that I make of you. I am selfish. I do want to see all of those things I mentioned come to pass... and I want to get off dialysis... because quite honestly it sucks.
So help me find just 4 more people today to fill out this year... and I'll be back in another year to ask this of you all again if I need to... in fact I'll be back next month if I don't see four new people.
And know this too... I am so very thankful to all of you who attempt to be a donor and to those of you who just simply help spread the word.
And a final note... if you do step up and contact MGH on my behalf... please don't forget or delay to follow through on the steps they ask of you because once you're in their sites they will delay on looking at others until you have been eliminated... the longer it takes you the longer it takes for me to eventually find my kidney.
The number to call is 617-726-6631 or you can call toll free at 1877-644-2860.
Thank you all.
My name is Bil... and I have kidney disease.
Just over a month ago I asked you to "have a heart... donate a kidney" complete with cute photography work showing me holding the same red heart in the location of my own heart and the approx location of where your kidney will end up inside of me if I get your kidney. This was a call to action post meant to move you... inspire you... make you laugh a little... make you think a little... make you want to give up one of your kidneys so I can see another 20 years of life.
I failed.
In the month that has passed only two new inquiries have come in and I happen to know that one of those came by way of word of mouth through high school friends and not through my call to action email. I know several of my closest friends and family have rallied on my behalf and spread the word and some have even attempted to be that person whose kidney keeps me living. It isn't an easy process and the chances are that you are more likely to be disqualified for a handful of reasons including age, weight, smoking, and a slew of other more unique situations that I won't talk about here as they would be considered private.
You don't know that my goal on that day was to shake out 6 people who would be willing candidates because I'm usually not that specific about my intentions... I like to keep it vague. But today I'm coming at you all from a different angle. I want you to know what's going on in my mind. You see it takes about 2 months for the transplant center to run the course with each new potential candidate. So six new candidates means I don't have to bug you all for about a year while they slowly eliminate everyone from this group of six. Unless of course one of these six happens to be a match... in which case hooray for me... I get a new kidney and another shot at living a full life.
Did you know that if it wasn't for my kidney disease I would be a perfectly healthy 48 year old man? I'm very unlike most kidney disease patients in that respect. Most of the folks I see with kidney disease have it as a secondary ailment. Usually they had diabetes first. Several of them are in their 70's and 80's and have already seen their children grow up and go through college and start careers and get married and have children... and that is really all we can truly hope for in life isn't it? The rest is all gravy. The vacations, the toys, the celebrations... they're all part of the fun but none of it compares to the joy of watching our children succeeding in their own ways.
Now I don't mean to suggest that those folks with other disease or who have already had relatively full lives don't deserve new kidneys as much as I do... but I do have so much to live for and so many years ahead of me and quite honestly I'm not going to make it without you.
That's what I want you to think about today. I'm not going to make it without you.
I'm not going to make it with out you.
Without you I won't see Amber marry the man of her dreams and have children.
Without you I won't see Charly graduate from high school and become the famous rap star that he thinks he wants to be (yes my 14 year old son fancies himself a rapper and I have to admit he's pretty good at it).
Without you I won't see my little princess attend her high school prom (does it help you to know that I just burst into tears as I wrote that). I won't witness her experience a broken heart. I won't see her go off to college and eventually meet the man of her dreams and marry and have children.
Without you I am nothing more than a human pin cushion (thanks for that visual Rita Stone) sitting in a dialysis chair for four hours, three days a week so I can stay alive long enough to hopefully find a donor and receive the kidney that buys me another chance.
I know its a selfish request that I make of you. I am selfish. I do want to see all of those things I mentioned come to pass... and I want to get off dialysis... because quite honestly it sucks.
So help me find just 4 more people today to fill out this year... and I'll be back in another year to ask this of you all again if I need to... in fact I'll be back next month if I don't see four new people.
And know this too... I am so very thankful to all of you who attempt to be a donor and to those of you who just simply help spread the word.
And a final note... if you do step up and contact MGH on my behalf... please don't forget or delay to follow through on the steps they ask of you because once you're in their sites they will delay on looking at others until you have been eliminated... the longer it takes you the longer it takes for me to eventually find my kidney.
The number to call is 617-726-6631 or you can call toll free at 1877-644-2860.
Thank you all.
My name is Bil... and I have kidney disease.
Tuesday, January 7, 2014
New Year... New Kidney?
This past year has brought many adventures my way.... most of which were not part of the big plan that I had for myself but they are part of the plan now.
The biggies include... the catheter... the fistula... dialysis as a whole... removal of the catheter (thank goodness)... several bleeding episodes... passing out in dialysis and of course that time I farted under the covers and it was so bad that even I had to evacuate the room. (heh heh... I love a good fart joke).
But on a more serious note... several folks stepped up and volunteered to donate a kidney on my behalf. Unfortunately every one of them has either been knocked off the list or for some reason has stopped contacting MGH to continue the process. So now I'm at ground zero.
It's time for me to reach out again and ask all of you who think you could spare a kidney to contact MGH and let them know you're interested in being a potential donor. I would be so grateful for the chance to pee like a real man again. (I kid.. I still pee... my pee just doesn't have the toxins in it that yours does because my kidneys don't remove said toxins... hence the reason I'm on dialysis).
I do make light of this situation but in all seriousness... I need a kidney... I need your kidney... yes you... so if you meet the qualifications then get on the horn and call MGH.
Here is some small print by way of my coordinator at MGH (its actually normal sized print so don't get confused... I'm just calling it small print because that sounds cool)
We did receive a call from 3 other people in the Fall but at this time we are still waiting for these people to send us records or to call us back. So at this time I am sorry to have to share there are no other potential living donors being actively evaluated for you. I think it would be appropriate at this time to send out another blast email to friends/ relatives etc. If you have not shared with all that you are now listed you could include this information. You have been listed since July 2013 and are ready for your kidney transplant anytime.
Also if you want to be more specific for what would be a good donor candidate for you include in your email that they need to be of a healthy weight, have medical insurance ( even though your insurance will cover the donor expenses) and not have kidney disease such as diabetes. When they call they will be asked to provide us with a copy of their medical records from a recent (within the year) routine physical. So they may need to see their PCP as well.
The number they can call is 617-726-6631 or toll free 1877-644-2860 to begin the donor evaluation process.
I have attached a flyer with more information that you can share with others as needed about being a living donor.
Answering
your questions about Living Kidney Donation at
Massachusetts
General Hospital
When
someone you know is in need of a kidney transplant, you have the
unique opportunity to consider being a living organ donor. Thank you
for taking the time to consider such an incredible act of generosity.
This handout is meant to answer a few of the most common questions
you may have at this time. For more information or to start your
donor evaluation please contact us at anytime.
How to contact
us:
617-726-6631 or
1-877- 644-2860
Who can donate?
Live kidney
donation is an opportunity for anyone in good health over the age of
18. Family members as well as friends, co-workers, and neighbors are
examples of potential donors.
Living kidney
donors:
- Have excellent general health
- Do not have Diabetes or Kidney Disease
- Have their own Health Insurance
- Are non- smokers for 3 months pre- donation
- Are of a healthy weight
How
long will I be in the hospital and how long will it take to recover?
Most
living kidney donors are in the hospital 2-3 days. You will need to
plan for 4-6 weeks after hospital discharge to recover from surgery.
For part of this time you will not be able to drive or work.
How
do they take out the kidney?
The
majority of the time the kidney is removed by laparoscopy surgery.
This is a minimally invasive procedure with small incisions in your
abdomen (one of which is in your belly button).
What
if my blood does not “Match” the recipient’s blood - can I
still be a donor?
Yes,
even if you are not a blood match you can still help others through
donation. We could offer you an opportunity to be part of a paired
exchange program (swap). This is when you would donate your kidney to
someone else so that your friend or family member could receive a
transplant from another person who matches best. Additionally, some
recipients could undergo special therapy to overcome the blood
mismatch so that you could still donate a kidney to them.
What
is the long term impact of donation on my health and lifestyle?
If you
qualify to be a donor that means the doctors and nurses of the MGH
Transplant Team have determined that it is safe and healthy for you
to donate one of your kidneys. There are no long term restrictions
on your activities or lifestyle after kidney donation.
What
are some risks and complications?
Donation
of a kidney is overall safe but the common risks that can occur with
any surgery are possible in living kidney donation. There is also
the rare possibility that the donated kidney will not work in the
recipient or in some cases the recipient’s kidney disease may come
back. All of the potential risks and complications will be discussed
in detail with you as part of your donor evaluation.
What
are the financial factors to consider in being a donor?
All of
the general costs associated with the evaluation, surgery and
hospital stay is covered by the recipient’s insurance. The
recipients insurance does not cover transportation, lodging or lost
wages. There are programs that can help with lodging and/or
transportation.
What
if I change my mind?
At
anytime in the process if you decide you no longer want to proceed
with kidney donation that is your right. Please know that your
decision will be fully respected and supported by the entire
transplant team.
To contact us at
anytime: 617-726-6631
or 1-877- 644-2860
Thursday, November 7, 2013
Did you miss me?
I know... I know... its been a while since you've heard from me, right? Well its not like I've been too lazy to write or anything. Its been more or less by design that we haven't had an entry into my little wimpy kidney blog. You see over the last two months there's really been nothing to report... I wake up every day and go about my business like anyone else except that on Mondays, Wednesdays and Fridays I spend four hours in a dialysis chair with a couple of needles in my arm. Oh there's an occasional issue like a needle that hits a nerve on the way in or an infiltrate (that's when they miss the target and my arm swells up and bruises) but you guys don't really want to hear about all that do you?
I suppose I could tell you about how anything that gets me excited or passionate like a conversation at work or even typing a blog entry seems to kick my uremia into effect and turns me into a Michael J. Fox. More than one person at works has worried that something was wrong with me during a heated conversation. This used to get me a little sympathy as it must be unsettling to watch someone vibrate as they're standing their ground on an issue, but now that everyone has caught on that its just a symptom of the uremia its business as usual.
But the real reason I'm writing an entry today is that I'm on the recovering end of a procedure that I had earlier this morning on my fistula arm. For those just catching up here.. a fistula was added to my arm in June of this year to create a sort of super vein in my arm that is used by my dialysis center for access to my blood which literally gets removed and replaced after passing through a filter. I suppose its a little more complicated than that but that will do for now, right?
So this morning's procedure is the result of some recent issues at dialysis. When I first started dialysis I was using a catheter in my chest while the fistula was maturing (turning my normal vein into that super vein I had mentioned). Then they started using the fistula with size 17 needles eventually increasing the size to 16 and with the intention of of increasing them to size 15. This takes time but by now they should have been able to get me on 15s, which would increase the flow at which they could run the machine that pulls my blood.
As mentioned in an earlier post I'm allergic to heparin, which is a product they use to help prevent the blood from clotting while its out of the body. Since they can't use heparin with me they need that blood flow to be as fast as possible.
More recently they felt the super vein just wasn't doing as good a job as they were expecting, especially considering that its so straight and pulses quite nicely (enter dirty joke here). So they asked me to have it looked at. Last week I saw my fistula-ologist... (there is no such thing.. I just made that word up) and he noticed two things. One was a pinch point near the fistula which reduced my generally 8 mm vein to 3 mm. The other was a tangential vein that was riding the coat tails of my super vein... this tends to happen with veins in the area of the fistula... they all take advantage of the increased flow of blood and start growing to support that flow.
Between the pinch point and the secondary super vein being formed the flow was being prevented and stolen from the access vein and this was preventing them from increasing those needles and getting more flow. So this morning my doctor cut open my arm and removed the section of vein that wasn't necessary and while he had my arm open he discovered a third and removed it as well. Then he opened up my arm above the fistula and sliced it open, then sliced a piece of my own vein that had been removed and stitched it onto the super vein. This will allow the pinch point to open up and provide better flow and will prevent the two coat tail riding veins from stealing flow from the access vein.
The whole process took about 2-3 hours and another hour or so of recovery and we were out the door and on our way home. I may have lied a little when I told the nurse that I was feeling fine... I was feeling hungry and wanted to leave so we could go eat. I was craving oatmeal but it was approaching noon and no one was going to have oatmeal so we decided to go with Meg's craving for a french dip sandwich and we ended up at Joe's American Bar & Grill.
Meg ordered the French dip style prime rib sandwich and I ordered the overpriced meatloaf and we ordered a couple of Arnold Palmers. The drinks came and I had a few sips.. it wasn't particularly great... but it was at least something in my stomach, having not been able to eat since dinner last night. Alas.. a strange sensation followed those few sips. I stepped outside for a breath of fresh air. I came back in a few minutes later and could tell I wasn't going to last much longer. It probably didn't help that I had taken a pain killer just before leaving the hospital. I was going down and there was nothing that I could do about it. I tried to play it off as if it would be okay but Meg saw right through my thin veil.
My phone rang. It was a work colleague calling with an issue. I stepped out again to talk to him and by the time I came back in Meg was walking out... she had cancelled our order and decided to get me home. Thank goodness the nurse had set us up with a special bag... just in case... because two minutes later "in case" happened right there in the car.
At home I was making my way to bed and the phone rang again. I was talking to my colleague again as round two hit... "sorry Steve I'll have to call you BAAAAAAAAAAAAAAAAAAAA." Thank goodness I had that bucket handy.
My name is Bil... and I have kidney disease
I suppose I could tell you about how anything that gets me excited or passionate like a conversation at work or even typing a blog entry seems to kick my uremia into effect and turns me into a Michael J. Fox. More than one person at works has worried that something was wrong with me during a heated conversation. This used to get me a little sympathy as it must be unsettling to watch someone vibrate as they're standing their ground on an issue, but now that everyone has caught on that its just a symptom of the uremia its business as usual.
But the real reason I'm writing an entry today is that I'm on the recovering end of a procedure that I had earlier this morning on my fistula arm. For those just catching up here.. a fistula was added to my arm in June of this year to create a sort of super vein in my arm that is used by my dialysis center for access to my blood which literally gets removed and replaced after passing through a filter. I suppose its a little more complicated than that but that will do for now, right?
So this morning's procedure is the result of some recent issues at dialysis. When I first started dialysis I was using a catheter in my chest while the fistula was maturing (turning my normal vein into that super vein I had mentioned). Then they started using the fistula with size 17 needles eventually increasing the size to 16 and with the intention of of increasing them to size 15. This takes time but by now they should have been able to get me on 15s, which would increase the flow at which they could run the machine that pulls my blood.
As mentioned in an earlier post I'm allergic to heparin, which is a product they use to help prevent the blood from clotting while its out of the body. Since they can't use heparin with me they need that blood flow to be as fast as possible.
More recently they felt the super vein just wasn't doing as good a job as they were expecting, especially considering that its so straight and pulses quite nicely (enter dirty joke here). So they asked me to have it looked at. Last week I saw my fistula-ologist... (there is no such thing.. I just made that word up) and he noticed two things. One was a pinch point near the fistula which reduced my generally 8 mm vein to 3 mm. The other was a tangential vein that was riding the coat tails of my super vein... this tends to happen with veins in the area of the fistula... they all take advantage of the increased flow of blood and start growing to support that flow.
Between the pinch point and the secondary super vein being formed the flow was being prevented and stolen from the access vein and this was preventing them from increasing those needles and getting more flow. So this morning my doctor cut open my arm and removed the section of vein that wasn't necessary and while he had my arm open he discovered a third and removed it as well. Then he opened up my arm above the fistula and sliced it open, then sliced a piece of my own vein that had been removed and stitched it onto the super vein. This will allow the pinch point to open up and provide better flow and will prevent the two coat tail riding veins from stealing flow from the access vein.
The whole process took about 2-3 hours and another hour or so of recovery and we were out the door and on our way home. I may have lied a little when I told the nurse that I was feeling fine... I was feeling hungry and wanted to leave so we could go eat. I was craving oatmeal but it was approaching noon and no one was going to have oatmeal so we decided to go with Meg's craving for a french dip sandwich and we ended up at Joe's American Bar & Grill.
Meg ordered the French dip style prime rib sandwich and I ordered the overpriced meatloaf and we ordered a couple of Arnold Palmers. The drinks came and I had a few sips.. it wasn't particularly great... but it was at least something in my stomach, having not been able to eat since dinner last night. Alas.. a strange sensation followed those few sips. I stepped outside for a breath of fresh air. I came back in a few minutes later and could tell I wasn't going to last much longer. It probably didn't help that I had taken a pain killer just before leaving the hospital. I was going down and there was nothing that I could do about it. I tried to play it off as if it would be okay but Meg saw right through my thin veil.
My phone rang. It was a work colleague calling with an issue. I stepped out again to talk to him and by the time I came back in Meg was walking out... she had cancelled our order and decided to get me home. Thank goodness the nurse had set us up with a special bag... just in case... because two minutes later "in case" happened right there in the car.
At home I was making my way to bed and the phone rang again. I was talking to my colleague again as round two hit... "sorry Steve I'll have to call you BAAAAAAAAAAAAAAAAAAAA." Thank goodness I had that bucket handy.
My name is Bil... and I have kidney disease
Saturday, September 7, 2013
Day 153
When I first started this blog I suspected that I would only be maintaining it for a short period of time. Somehow I imagined that I would find and receive a new kidney in just a few months. Here it is five months later and I'm really not any closer than I was back in April. There have been a few people who have been eliminated from consideration since then and there currently always seems to be someone in the process of being considered as the donor and I could hear good news any day... but you can't spend your days waiting for that phone to ring... it would drive you crazy every time it didn't.
When dialysis started up in late May it was a new and interesting experience. Sometimes scary... but generally painless and there was entertainment in the form of a television/computer screen. When I started dialysis it was via the catheter in my chest. Eventually they switched me over to the fistula, but that hasn't been without issues. I've had to switch back to the catheter twice during recovery periods for issues I've had.
So much for generally painless... now that I use the fistula I have to endure the sting of two needles each dialysis session and on occasion... like last night... one of the needles wasn't flowing right so they added a third needle. Ouch. It's not fun being a human pin cushion.
The novelty of dialysis is wearing off. Computer solitaire and reruns of Friends or Seinfeld gets old real fast. I wonder how people do this for years. I wonder how many years it takes before you just want to give up.
The good news... I'm getting this catheter out on Tuesday. I'll need to wait 48 hours after that before I can take a real shower... but to know that a real shower is less than a week away... and that a swim in the ocean is possibly just around the corner... well its the small things that keep me going.
My name is Bil... and I have kidney disease
When dialysis started up in late May it was a new and interesting experience. Sometimes scary... but generally painless and there was entertainment in the form of a television/computer screen. When I started dialysis it was via the catheter in my chest. Eventually they switched me over to the fistula, but that hasn't been without issues. I've had to switch back to the catheter twice during recovery periods for issues I've had.
So much for generally painless... now that I use the fistula I have to endure the sting of two needles each dialysis session and on occasion... like last night... one of the needles wasn't flowing right so they added a third needle. Ouch. It's not fun being a human pin cushion.
The novelty of dialysis is wearing off. Computer solitaire and reruns of Friends or Seinfeld gets old real fast. I wonder how people do this for years. I wonder how many years it takes before you just want to give up.
The good news... I'm getting this catheter out on Tuesday. I'll need to wait 48 hours after that before I can take a real shower... but to know that a real shower is less than a week away... and that a swim in the ocean is possibly just around the corner... well its the small things that keep me going.
My name is Bil... and I have kidney disease
Saturday, August 17, 2013
HIT & Run
So for over two months I've been on dialysis and have had at least four different episodes of unstoppable bleeding. These events have all fallen on the evenings following dialysis. To me it was obvious right away that there was a connection between dialysis and the bleeding. The most recent event happened almost two weeks ago on a Monday following dialysis. Now that they're using my fistula for dialysis it means that each session leaves me with two new puncture wounds to my left arm. On that night one of the two would not stop bleeding and I spent 12 hours in two different emergency rooms trying to get it to stop.
I've really only had 5 sessions where they've used the fistula because the blowout on my second day caused me to lose a week of use and then the episode of bleeding almost two weeks ago has again forced me to lose a couple weeks of use.
On the Wednesday following the last bleeding event my nephrologist, the manager of the dialysis unit and I sat down and discussed the problem. They finally were hearing me and believing me that there was a connection between my dialysis and the bleeding events.
I had suspected that some of the technicians were not paying attention to the special instructions for my case that included no heparin. I assumed on the evenings where I had bleeding events that someone had accidentally given me some heparin. Heparin is an anti-coagulant and I'm not sure why but its often used in the dialysis process. After my first couple of bleeding events it was decided that I would not get heparin during my dialysis sessions.
However... there is a need to fill the chambers of my catheter between sessions with a solution that prevents the catheter from getting blocked and they do this by adding saline with 5000 parts per million of heparin. The amount they add is based on the volume my catheter holds when not in use, which turns out to be 22 Ml & 24 Ml (there's an inny and an outty, two chambers). They also make a solution that is 1000 parts per million of heparin and at first it was decided that my catheter would be filled with that solution instead of the 5000 parts per million version.
But it was also decided that they needed to do a special blood test that they don't normally do. An order was placed and on the Friday following the bleeding event they took the blood sample and ran the test. On the following Monday, this past Monday, they let me know that there suspicions were confirmed. I had Heparin-induced thrombocytopenia (HIT). Basically its like being allergic to heparin... for lack of a better way to describe it.
For me... heparin not only helps reduce clotting it drops my platelet counts to ridiculously low levels. So even though I was only getting 5000 parts per million added to the chamber of my catheter, if the technician was over by even half a milliliter then that half a milliliter got into my system and wiped out my ability to scab over and stop the bleeding.
I'm officially off the heparin now even in the chambers of my catheter. They'll take another sample of my blood this Monday and test it to make sure my platelet count is back up to at least 140, then they'll put me back on the fistula. Nothing is ever simple... but its certainly always interesting.
My name is Bil... and I have kidney disease.
I've really only had 5 sessions where they've used the fistula because the blowout on my second day caused me to lose a week of use and then the episode of bleeding almost two weeks ago has again forced me to lose a couple weeks of use.
On the Wednesday following the last bleeding event my nephrologist, the manager of the dialysis unit and I sat down and discussed the problem. They finally were hearing me and believing me that there was a connection between my dialysis and the bleeding events.
I had suspected that some of the technicians were not paying attention to the special instructions for my case that included no heparin. I assumed on the evenings where I had bleeding events that someone had accidentally given me some heparin. Heparin is an anti-coagulant and I'm not sure why but its often used in the dialysis process. After my first couple of bleeding events it was decided that I would not get heparin during my dialysis sessions.
However... there is a need to fill the chambers of my catheter between sessions with a solution that prevents the catheter from getting blocked and they do this by adding saline with 5000 parts per million of heparin. The amount they add is based on the volume my catheter holds when not in use, which turns out to be 22 Ml & 24 Ml (there's an inny and an outty, two chambers). They also make a solution that is 1000 parts per million of heparin and at first it was decided that my catheter would be filled with that solution instead of the 5000 parts per million version.
But it was also decided that they needed to do a special blood test that they don't normally do. An order was placed and on the Friday following the bleeding event they took the blood sample and ran the test. On the following Monday, this past Monday, they let me know that there suspicions were confirmed. I had Heparin-induced thrombocytopenia (HIT). Basically its like being allergic to heparin... for lack of a better way to describe it.
For me... heparin not only helps reduce clotting it drops my platelet counts to ridiculously low levels. So even though I was only getting 5000 parts per million added to the chamber of my catheter, if the technician was over by even half a milliliter then that half a milliliter got into my system and wiped out my ability to scab over and stop the bleeding.
I'm officially off the heparin now even in the chambers of my catheter. They'll take another sample of my blood this Monday and test it to make sure my platelet count is back up to at least 140, then they'll put me back on the fistula. Nothing is ever simple... but its certainly always interesting.
My name is Bil... and I have kidney disease.
Saturday, August 10, 2013
Another Day
It's been a couple of weeks since I sat down to write a post. Not for lack of anything to write about, but more because I've just found it hard to find time to sit and write. Life feels very busy at the moment. My project at work has been demanding of my time and with dialysis eating into my weekdays its harder to hit my schedules.
So what has gone down over the last couple of weeks in the world of my kidney disease?
1. Finally was officially added to the list at MGH.
2. My fistula blow out recovered and we started using that instead of my catheter.
3. This past week I had a bleeding issue after one of my dialysis sessions and I ended up spending 12 hours in two different E.R.s resolving the issue.
4. My body bruises now so easily that I'm covered 3" diameter bruises on my arms and legs.
5. MGH has started the process of working up the next potential donor.
6. My dialysis center is trying to figure out why I keep having these bleeding episodes.
So which of these are worthy of writing about? I could use this opportunity to remind anyone who wants to volunteer to be a kidney donor on my behalf that they will need to contact MGH directly to get that process started. If you contacted Lahey while I was under their care that no longer counts... it has to be through MGH. The number if you are interested is 617-643-7193.
I could tell you all about the person being worked up by MGH... but I'd prefer to just let that all run through until they find an actual donor... and then at that point, if I had that persons permission I would write about him or her. For now it should be enough to know that I'm so appreciative of those who have stepped up. I know this is no small favor I ask and that you would be willing to do this for me... well no words could ever truly capture what it means to me.
I could tell you about my bleeding episode but really I've told that story before... haven't I? Do you really want to hear it again? And until my dialysis center resolves the problem with the bleeding episodes I can't say much about that.
What more can I say about the bruising... it happens. I have to wear a blood pressure cuff throughout my dialysis treatments and I believe even just wearing that cuff has caused bruising.
Well that's all I've got really.
My name is Bil... and I have kidney disease.
So what has gone down over the last couple of weeks in the world of my kidney disease?
1. Finally was officially added to the list at MGH.
2. My fistula blow out recovered and we started using that instead of my catheter.
3. This past week I had a bleeding issue after one of my dialysis sessions and I ended up spending 12 hours in two different E.R.s resolving the issue.
4. My body bruises now so easily that I'm covered 3" diameter bruises on my arms and legs.
5. MGH has started the process of working up the next potential donor.
6. My dialysis center is trying to figure out why I keep having these bleeding episodes.
So which of these are worthy of writing about? I could use this opportunity to remind anyone who wants to volunteer to be a kidney donor on my behalf that they will need to contact MGH directly to get that process started. If you contacted Lahey while I was under their care that no longer counts... it has to be through MGH. The number if you are interested is 617-643-7193.
I could tell you all about the person being worked up by MGH... but I'd prefer to just let that all run through until they find an actual donor... and then at that point, if I had that persons permission I would write about him or her. For now it should be enough to know that I'm so appreciative of those who have stepped up. I know this is no small favor I ask and that you would be willing to do this for me... well no words could ever truly capture what it means to me.
I could tell you about my bleeding episode but really I've told that story before... haven't I? Do you really want to hear it again? And until my dialysis center resolves the problem with the bleeding episodes I can't say much about that.
What more can I say about the bruising... it happens. I have to wear a blood pressure cuff throughout my dialysis treatments and I believe even just wearing that cuff has caused bruising.
Well that's all I've got really.
My name is Bil... and I have kidney disease.
Thursday, July 25, 2013
Dentally Speaking
Sorry now if this post is kinda gross... please don't read if you're easily skived out.
So I'm anemic as a result of my kidney disease... fairly common. Early on in my catheter days I had a few bleeding episodes that landed me in the emergency room over night. One thing I noticed is that it seemed to happen after dialysis sessions when they gave me heparin... an anti coagulant. So I mentioned it and we dropped the heparin from my routine.
Yesterday I had a long overdue dental cleaning prior to my dialysis. Although there was plenty of bleeding during the cleaning, I left there without any kind of significant bleeding. An hour later I was in dialysis and I'm not certain but I believe someone may have given me heparin yesterday.
Last night I brushed my teeth before going to bed. As you might expect following an intense dental cleaning... the brushing caused a little followup bleeding. Unfortunately the bleeding just never stopped. I tried to just ignore it and hope it would go away before waking up this morning... but instead it got so bad that I awoke around midnight with my pillow and face covered in blood.
I got up and cleaned up. Looked at my mouth and the blood was trying to clot. This led to little gelatinous blood pillows all over my mouth and wrapped around my teeth. It was.. gross.
I brushed my teeth again to try and clean it up but that started the bleeding again. I went back to bed but kept waking up every hour or so and returned to the bathroom to do a little more cleaning of blood pillows from my mouth.
This morning it appears to finally be returning to normal but I still had some follow up cleaning to do in some hard to reach places. Hopefully this will be the last of it... tough night when you can't get a full night of sleep and have to keep cleaning up blood from your face and mouth.
My name is Bil... and I have some weird shit that happens to me due to this kidney disease.
So I'm anemic as a result of my kidney disease... fairly common. Early on in my catheter days I had a few bleeding episodes that landed me in the emergency room over night. One thing I noticed is that it seemed to happen after dialysis sessions when they gave me heparin... an anti coagulant. So I mentioned it and we dropped the heparin from my routine.
Yesterday I had a long overdue dental cleaning prior to my dialysis. Although there was plenty of bleeding during the cleaning, I left there without any kind of significant bleeding. An hour later I was in dialysis and I'm not certain but I believe someone may have given me heparin yesterday.
Last night I brushed my teeth before going to bed. As you might expect following an intense dental cleaning... the brushing caused a little followup bleeding. Unfortunately the bleeding just never stopped. I tried to just ignore it and hope it would go away before waking up this morning... but instead it got so bad that I awoke around midnight with my pillow and face covered in blood.
I got up and cleaned up. Looked at my mouth and the blood was trying to clot. This led to little gelatinous blood pillows all over my mouth and wrapped around my teeth. It was.. gross.
I brushed my teeth again to try and clean it up but that started the bleeding again. I went back to bed but kept waking up every hour or so and returned to the bathroom to do a little more cleaning of blood pillows from my mouth.
This morning it appears to finally be returning to normal but I still had some follow up cleaning to do in some hard to reach places. Hopefully this will be the last of it... tough night when you can't get a full night of sleep and have to keep cleaning up blood from your face and mouth.
My name is Bil... and I have some weird shit that happens to me due to this kidney disease.
Saturday, July 20, 2013
Bump in the road
The first fistula session went pretty well. Only one relatively small needle used in the arm. It really didn't hurt at all so my nervousness was unwarranted. I need three consecutive successful uses of my fistula with two needles before I can have the catheter removed.
My second fistula session didn't go quite as well as the first. The first needle went in pretty much the same as the first session... but the second needle missed its mark. Initially this led to the need to "adjust" it and that was less than fun. Then as they started to dialyze my blood the machine kept beeping. Something wasn't right. They kept trying to adjust the position of that needle and my arm to get a better result. Nothing worked. Then the technician touch my arm and asked me if that hurt? It did and I said yes. Then she started moving quickly and not speaking at all. She just went into serious mode and I could tell something wasn't right although I could only just sit there and wait to see what was going down. I knew better than to ask.. I was better off being dumb.
Within three to four minutes it was all over. I was no longer being dialyzed via the needles... but through my catheter instead. The needles were still there and an ice pack was resting over my arm and the technician said... "Let me explain what happened".
Basically a lump started to form adjacent to the second needle and the technician recognized this as some kind of problem and so she made the command decision to stop the process via the needles and get ice on it as soon as possible to prevent the lump from getting worse and to reduce the bruising that would follow.
So we'll try again on Monday and see how it goes. Meanwhile I've got this lovely bruised lump in my arm that I need to keep icing through the day.
My second fistula session didn't go quite as well as the first. The first needle went in pretty much the same as the first session... but the second needle missed its mark. Initially this led to the need to "adjust" it and that was less than fun. Then as they started to dialyze my blood the machine kept beeping. Something wasn't right. They kept trying to adjust the position of that needle and my arm to get a better result. Nothing worked. Then the technician touch my arm and asked me if that hurt? It did and I said yes. Then she started moving quickly and not speaking at all. She just went into serious mode and I could tell something wasn't right although I could only just sit there and wait to see what was going down. I knew better than to ask.. I was better off being dumb.
Within three to four minutes it was all over. I was no longer being dialyzed via the needles... but through my catheter instead. The needles were still there and an ice pack was resting over my arm and the technician said... "Let me explain what happened".
Basically a lump started to form adjacent to the second needle and the technician recognized this as some kind of problem and so she made the command decision to stop the process via the needles and get ice on it as soon as possible to prevent the lump from getting worse and to reduce the bruising that would follow.
So we'll try again on Monday and see how it goes. Meanwhile I've got this lovely bruised lump in my arm that I need to keep icing through the day.
Wednesday, July 17, 2013
Nervous
Monday of this week I was given the thumbs up on switching from my catheter to my fistula at dialysis. Today will be the first time we try the fistula. Now the way this stuff works is that there are two ports... one outty and one inny. Until now both of my ports are via the catheter, which has been surgically connected to the base of my neck or upper chest if you will. When the fistula is fully functioning it will mean that two needles will enter my arm on each dialysis day, but as we start the process today they will use just one needle as the outty and keep the catheter as the inny.
These needles are not as tiny as the needle used to draw blood at the blood lab. In fact they're quite large as you can see in this photo.
These needles are not as tiny as the needle used to draw blood at the blood lab. In fact they're quite large as you can see in this photo.
Today they'll use one of the "smaller" needles to start me out because we need to work up to the larger size and we're using just one for the same reason... we need to work up to two. I've been told these needles hurt. I've been given three options.
- apply a cream to my arm about an hour before dialysis that will numb the area they insert the needle. For some reason they require you to then wrap your arm in plastic wrap afterwards... perhaps to prevent it from getting onto other parts of your skin and numbing those areas.
- use a spray that numbs the area just before getting the needle. I'm told this hurts more than the needle.
- suck it up... grin and bear it.
I'm not too keen on any of these solutions but for today I'm trying option three so I can judge the kind of pain we're talking about.
I hate needles. I can't watch the needles being inserted when I have blood drawn. The idea of something entering my body just freaks me right out. Now knowing that I'm going to have a large diameter needle pierce my skin, I have to admit, has me a bit scared.
They tell me it will be about two more weeks at least before they can remove the catheter. The short term goal here is to do whatever needs to be done to get this catheter out of me. This is what I will focus on as I feel the pain of that needle puncturing my arm today and for the next few visits as they increase the size and the number of needles to two. Not sure I'll be able to use the grin and bear it method beyond today... the cream may be my eventual solution. But who in their right mind would choose the spray after they've been told it hurts more than the needles.
My name is Bil... and I'm nervous for the first time since this whole thing started.
Friday, July 5, 2013
parting will be such sweet fishy sorrow
So this week included my work up at MGH. Initially I thought it would include all the same testing I had on my full day work up at Lahey a few months ago. Most of which was nothing all that difficult, but for that darn stress test... that was not fun. As it turned out I only had to do half the blood work (11 vials) and none of the other tests. So the rest of the day was all listening to a lecture about kidney transplant and then meeting with the team at MGH one at a time, interview style.
It will be two weeks before I hear back as to whether or not I will be accepted as a patient at MGH. I have no reason to believe I won't be, after all... if Lahey would have me why wouldn't MGH, but there are formalities to it all and so I must wait for them to meet and discuss me as a patient.
I did learn a few new things at MGH. For example that they are doing some cutting edge stuff there that few others are doing. This includes an interesting approach to certain qualifying transplants involving half match siblings. Half match means that at least three of six antigens are identical. We all get six antigens from our parents, three from each parent. Siblings have something like a one in four chance of being a half match, but the likely hood that two non related people will be a half match is pretty low as there are literally thousands of antigens out there.
If your donor is a half match sibling MGH offers an option where they would not only transplant the kidney but would also transplant a small amount of the donors bone marrow. This some how eliminates the need for certain rejection medications. I don't know that my donor will be a sibling or that my sibling would be a willing participant in such an option, but just that they are doing this kind of cutting edge stuff makes me excited about the fact that I've chosen MGH over Lahey.
There was another new piece of information I learned at MGH... this one is actually a bit of bad news and I've spent the last few days pondering how exactly I should deal with this unfortunate bit of information. It turns out that following my transplant I won't be able to eat my favorite food ever again. Sushi. Yep... no more sushi after the transplant. I think sometime between now and the transplant I'll have to have a big sushi party. Maybe an all day sushi affair. I can not tell you how sad this makes me... nothing can ever replace the full on food joy I receive from eating sushi. People try to comfort me by saying things like: "Well you can still eat California rolls" but come on.. that shit's not real sushi.
My name is Bil... and I have kidney disease and a hankerin for some sushi.
It will be two weeks before I hear back as to whether or not I will be accepted as a patient at MGH. I have no reason to believe I won't be, after all... if Lahey would have me why wouldn't MGH, but there are formalities to it all and so I must wait for them to meet and discuss me as a patient.
I did learn a few new things at MGH. For example that they are doing some cutting edge stuff there that few others are doing. This includes an interesting approach to certain qualifying transplants involving half match siblings. Half match means that at least three of six antigens are identical. We all get six antigens from our parents, three from each parent. Siblings have something like a one in four chance of being a half match, but the likely hood that two non related people will be a half match is pretty low as there are literally thousands of antigens out there.
If your donor is a half match sibling MGH offers an option where they would not only transplant the kidney but would also transplant a small amount of the donors bone marrow. This some how eliminates the need for certain rejection medications. I don't know that my donor will be a sibling or that my sibling would be a willing participant in such an option, but just that they are doing this kind of cutting edge stuff makes me excited about the fact that I've chosen MGH over Lahey.
There was another new piece of information I learned at MGH... this one is actually a bit of bad news and I've spent the last few days pondering how exactly I should deal with this unfortunate bit of information. It turns out that following my transplant I won't be able to eat my favorite food ever again. Sushi. Yep... no more sushi after the transplant. I think sometime between now and the transplant I'll have to have a big sushi party. Maybe an all day sushi affair. I can not tell you how sad this makes me... nothing can ever replace the full on food joy I receive from eating sushi. People try to comfort me by saying things like: "Well you can still eat California rolls" but come on.. that shit's not real sushi.
My name is Bil... and I have kidney disease and a hankerin for some sushi.
Friday, June 28, 2013
Layman's Terms
Folks in the medical industry have a different way of talking than the rest of us. In recent months as my doctor visits increased substantially I found that each doctor, nurse or medical technician that I would deal with in regards to my kidney disease would ask a similar variation on a single question. usually it came out something like this:
"What brought on your kidney disease?"
Now to me, the simple layman, the question I heard was "what caused your kidney disease" to which I would look at them with my face half screwed and say (in my head) "your the fucking doctor... you tell me." What really would come out of my mouth was something to the effect of "Life" or "I don't really know."
At some point during the appointment with them they would be reading through something on a computer screen and say "Oh, you have IGA Nephropathy." Again I'm thinking to myself... "dude ya.. why the F do you think I'm even here right now?" But of course my politer side would actually just say yes.
One dude even printed out this whole report on IGA Nephropathy and handed it to me as if I had no idea about the type of kidney disease I had. And therein lies the difference between medical folks and laypeople. While we hear that first question as what caused your kidney disease... to the medical person it really means "what kind of kidney disease do you have?"
It was frustrating for the first few weeks while I got used to this... but now that I know better and have learned to speak at least a little mediceese... I always answer that question with a confident IGA Nephropathy. Not that I know much about it or how I got it.. but at least I look less like an idiot than I did in those first few weeks.
My name is Bil... and I have kidney disease
"What brought on your kidney disease?"
Now to me, the simple layman, the question I heard was "what caused your kidney disease" to which I would look at them with my face half screwed and say (in my head) "your the fucking doctor... you tell me." What really would come out of my mouth was something to the effect of "Life" or "I don't really know."
At some point during the appointment with them they would be reading through something on a computer screen and say "Oh, you have IGA Nephropathy." Again I'm thinking to myself... "dude ya.. why the F do you think I'm even here right now?" But of course my politer side would actually just say yes.
One dude even printed out this whole report on IGA Nephropathy and handed it to me as if I had no idea about the type of kidney disease I had. And therein lies the difference between medical folks and laypeople. While we hear that first question as what caused your kidney disease... to the medical person it really means "what kind of kidney disease do you have?"
It was frustrating for the first few weeks while I got used to this... but now that I know better and have learned to speak at least a little mediceese... I always answer that question with a confident IGA Nephropathy. Not that I know much about it or how I got it.. but at least I look less like an idiot than I did in those first few weeks.
My name is Bil... and I have kidney disease
Friday, June 21, 2013
Bruite and Thrill
I arrived at my sister's house the other night to join two of my sister's (Tricia & Kathy) for dinner before Kathy makes the great escape to Florida next week along with every other member of our family except Tricia and myself. I hadn't seen Tricia's kids in quite some time and as the goofball uncle I decided to play a little trick on them. When I arrived I went into the room they were all sitting in and told them I learned a new trick. I grabbed the chord to the lamp and told them all I could pull electricity out of the chord. I put my fistulated (ya I just coined that word) wrist out for them to touch and had each of them rest their hand directly on the area of the fistula. The reactions weren't as great as I had hoped although the girls did giggle a bit. I guess they're a little immune to my silliness after all of these years or perhaps as they're all growing up.
So what is it that is happening at the point on my wrist where the fistula has been added? Well I'm no expert and in an earlier post I suggested that a piece of vein was added in that area but I have done a tad bit of research and I have a bit more of an understanding of what is going.
So I believe fistulas occur naturally within our body, particularly in diseased areas and an abnormal passage forms between two organs or parts of the body. I'm guessing that doctors, upon discovering fistulas, realized they could create their own and that they could be useful... as an example in the case of dialysis.
What they do is they split a vein in the arm and then attach it to a deeper artery. What happens naturally as this heals is that the vein takes on characteristics of the artery and becomes a sort of super vein. As we all recall from 7th grade science class (ya right) an artery carries blood from the heart out to various parts of the body and veins carry the blood back to the heart. When the vein is tied to that artery the turbulence created by the opposite direction of flow (or so I believe) is causing a vibration that almost feels electric. This is called in medical terms the thrill.
When I sleep at night my arm often finds its way onto my pillow and typically I have an ear on that same pillow. Whenever this happens I hear the pumping of my blood through my body by way of the fistula. When I visit the doctor who performed the procedure that created the fistula he always listens with a stethoscope. The sound he is listening to is similar to what I hear through my pillow. The medical term for this is called a bruite (pronounced broo-ee... it must be french).
After visiting with Tricia's kids I made my way to the kitchen to see Tricia and Kathy. They both felt it too. I won't tell you about the conversation that followed but I will tell you that Kathy mentioned if she got a fistula she would ask them to amp it up a bit. Think about it.
My name is Bil... and I have kidney disease.
So what is it that is happening at the point on my wrist where the fistula has been added? Well I'm no expert and in an earlier post I suggested that a piece of vein was added in that area but I have done a tad bit of research and I have a bit more of an understanding of what is going.
So I believe fistulas occur naturally within our body, particularly in diseased areas and an abnormal passage forms between two organs or parts of the body. I'm guessing that doctors, upon discovering fistulas, realized they could create their own and that they could be useful... as an example in the case of dialysis.
What they do is they split a vein in the arm and then attach it to a deeper artery. What happens naturally as this heals is that the vein takes on characteristics of the artery and becomes a sort of super vein. As we all recall from 7th grade science class (ya right) an artery carries blood from the heart out to various parts of the body and veins carry the blood back to the heart. When the vein is tied to that artery the turbulence created by the opposite direction of flow (or so I believe) is causing a vibration that almost feels electric. This is called in medical terms the thrill.
When I sleep at night my arm often finds its way onto my pillow and typically I have an ear on that same pillow. Whenever this happens I hear the pumping of my blood through my body by way of the fistula. When I visit the doctor who performed the procedure that created the fistula he always listens with a stethoscope. The sound he is listening to is similar to what I hear through my pillow. The medical term for this is called a bruite (pronounced broo-ee... it must be french).
After visiting with Tricia's kids I made my way to the kitchen to see Tricia and Kathy. They both felt it too. I won't tell you about the conversation that followed but I will tell you that Kathy mentioned if she got a fistula she would ask them to amp it up a bit. Think about it.
My name is Bil... and I have kidney disease.
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