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.
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