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
Friday, June 28, 2013
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.
Friday, June 14, 2013
the big switch
Dear friends, family, acquaintances and strangers (and Larry the toll booth operator)
Today, June 14th, 2013, I made a decision to change my transplant health care from Lahey Clinic to Mass General Hospital. Although the people at Lahey could not have been kinder to me, I was less than happy with their ultimate care. There were a few incidences where they sorta dropped the ball a bit and that was a few too many for me. I have a serious health issue and I need a serious team... I need the best possible team on my side.
This decision like all that I make relative to my kidney disease was not an easy one to make. I wasn't sure that I wanted to ask everyone who already volunteered to have to start the process all over again. But in the end this is about the best possible care I can receive.
If you are still interested in volunteering to donate a kidney on my behalf please call 617-643-7193 and ask for Jobanna. If you've already been turned down by Lahey that's not a reason to not try again, MGH has their own guidelines and though in some ways they'll be tougher they are also a cutting edge facility and some of what I've heard about the things they're doing are blowing me away. They actually have been involved in a 30 pair match... imagine 30 different kidneys being transplanted around the country at one time... fricken amazing.
I know this is a pain in the butt... but its important to me that I receive the greatest care possible. Thank you for your support and for volunteering to give a little bit of you to help extend my life.
My name is Bil... and I have great friends for doing this for me.
Crazy Week
Last week included the addition of a fistula placed into my left wrist... which when you place your hand on it... feels like a kitten purring. Then Monday towards the end of dialysis I started bleeding from the catheter wound. This would be the second time this has happened and the first time had me spending several hours in the emergency room at Lahey Clinic. On this second occasion I spent the first half of the night at the emergency room at Anna Jacques... hoping they could stop the bleeding. After laying there with a ten pound sandbag on my chest for an hour the bleeding still hadn't stopped so we opted to wrap my upper body in gauze and ace bandages. Turning me into a mummy for the next few hours while I attempted to sleep. I had two appointments in the morning at Lahey Clinic so we were thinking that this mummy wrap would get me through the night to those appointments where the local surgeon could take a look at the issue and resolve it.
I got about 2 hours of sleep before waking up to a bloodied shirt and pillow. the wrap kept the blood from seeping down, but the blood eventually soaked the gauze and the gravity took it over my shoulders and down to the bed. I got up and added more gauze and ace bandages to the mummy wrap, then drove myself to Lahey Clinic's emergency room where they stitched me back up. Second time in less than a week.
By the time I got home Tuesday morning I was so exhausted I slept Tuesday away and awoke Wednesday to feeling better than I have felt in years. Was it all that sleep, was it the dialysis starting to work its magic, was it the loss of all that blood, which is by the way tainted blood as my kidneys no longer clean the toxins from my body, and the new blood my body made while resting all day Tuesday was cleaner and so all of that combined with the dialysis magic lead to a general feeling of semi wellness relative to my last three to four years? I don't know... but I'll take it... it felt good to feel good (just call me captain obvious).
I decided to skip dialysis on Wednesday. This is not a decision I made lightly. My chest is quite raw right now. All the bandages being put on and pulled of. All of the cleaning that goes on in the general area of my catheter. All of the tugging at my catheter to hook me up to dialysis and remove me from dialysis. And all of the stitching that has gone on in the area of my catheter. Not to mention that I believe I'm allergic to all the adhesives on those bandages that keep getting added and removed. I really felt like I needed a break. An extra day to heal between dialysis sessions. The center was adamant that I not miss my session, but I talked to the Nephrologist for the center and she backed me up. She agreed that it would not hurt for me to miss a day and try to heal.
I also mentioned to the Nephrologist that I had a theory about why I keep bleeding. You see at the end of each dialysis treatment they shoot a little heparin into the catheter to prevent clotting. Well I'm anemic as a result of the kidney disease and I already have a hard time clotting and now they're adding something to make clotting that much harder... all while tugging at an area on my chest that could use some time to heal. I asked if we could skip the heparin for a few treatments and she agreed.
This afternoon will be my first treatment since Monday. Lets see if I end up in the emergency room again tonight. I'm not really superstitious... but my fingers are figuratively crossed.
My name is Bil... and I have Kidney disease
I got about 2 hours of sleep before waking up to a bloodied shirt and pillow. the wrap kept the blood from seeping down, but the blood eventually soaked the gauze and the gravity took it over my shoulders and down to the bed. I got up and added more gauze and ace bandages to the mummy wrap, then drove myself to Lahey Clinic's emergency room where they stitched me back up. Second time in less than a week.
By the time I got home Tuesday morning I was so exhausted I slept Tuesday away and awoke Wednesday to feeling better than I have felt in years. Was it all that sleep, was it the dialysis starting to work its magic, was it the loss of all that blood, which is by the way tainted blood as my kidneys no longer clean the toxins from my body, and the new blood my body made while resting all day Tuesday was cleaner and so all of that combined with the dialysis magic lead to a general feeling of semi wellness relative to my last three to four years? I don't know... but I'll take it... it felt good to feel good (just call me captain obvious).
I decided to skip dialysis on Wednesday. This is not a decision I made lightly. My chest is quite raw right now. All the bandages being put on and pulled of. All of the cleaning that goes on in the general area of my catheter. All of the tugging at my catheter to hook me up to dialysis and remove me from dialysis. And all of the stitching that has gone on in the area of my catheter. Not to mention that I believe I'm allergic to all the adhesives on those bandages that keep getting added and removed. I really felt like I needed a break. An extra day to heal between dialysis sessions. The center was adamant that I not miss my session, but I talked to the Nephrologist for the center and she backed me up. She agreed that it would not hurt for me to miss a day and try to heal.
I also mentioned to the Nephrologist that I had a theory about why I keep bleeding. You see at the end of each dialysis treatment they shoot a little heparin into the catheter to prevent clotting. Well I'm anemic as a result of the kidney disease and I already have a hard time clotting and now they're adding something to make clotting that much harder... all while tugging at an area on my chest that could use some time to heal. I asked if we could skip the heparin for a few treatments and she agreed.
This afternoon will be my first treatment since Monday. Lets see if I end up in the emergency room again tonight. I'm not really superstitious... but my fingers are figuratively crossed.
My name is Bil... and I have Kidney disease
Friday, June 7, 2013
the long day
5:30 am Thursday... standing in front of the bathroom mirror I see a giant red dot in the middle of my tee shirt. My immediate thought was that somehow my catheter is draining blood and I'm going to bleed out. But then reality suggests that bleeding out would have meant that I'd still be laying in bed... and probably dead.
I called my dialysis center and they told me to come right in. I waited there for about an hour as they got all of their first shift patients setup into their chairs for treatments. Then they inspected my bleeding chest, removed all of the old blood soaked bandages and redressed the wound. I was home just about 7:00, but as I tried to clean up some of the dried blood on my chest I noticed I started dripping again. Back to the center again... this time they said there's really not much they can do about it and it might just need some time to clot. They told me if it happened again.. just go to the emergency room.
Knowing I was heading down to Lahey Clinic I opted to just add some taped up paper towels to my chest to help absorb any blood flow. By the time I got to Lahey at 9:45 that towel had soaked through too and my newly designated dialysis shirt... a faded yellow Hawaiian shirt, was now sporting a few lovely red dots above my chest wound. I pointed out to the woman in the waiting room my issue and she had me brought into the ambulatory surgery pre surgery area to again remove the blood soaked bandages and attempt to repair the leak. They left me laying there because it seemed to bleed more if I was sitting up or standing.
Two hours later I was in surgery having my fistula added. I awoke from this procedure to a handful of medical personal standing around me and letting me know that they were going to get me a number to call to file an official complaint. I was completely confused.. had no idea what they were referring to. I asked them why and they said because of all of the issues I've been experiencing at Lahey over the last two months. Apparently the drugs they gave me to knock me out made me chatty and quite honest. I guess I told them all about how I've been really disappointed at the poor level of care I've received. I have no idea what I said... but they were all very concerned on my behalf. I felt pretty stupid sitting there guilty of having given them all a little "what for" but having no idea what I said.
Back in recovery I was given the run down of the things I would probably feel and things I would need to do to care for my new fistula and how my chest wound had been attended to and should be fine now as well. Meg and Annie showed up between 3:30 and 4:00 to pick me up. We left and started traveling north on 95 towards Newburyport when we decided to stop for burgers at Five Guys... none of us had eaten there yet. On our way there on Route 1 in Saugus I discovered the wound was bleeding again.. this time leaving a big red patch on my dialysis shirt. We stopped in to a CVS... bought our own gauze and patch materials and swapped out the bloody dressing for a new clean one. Went to Five Guys, ate our burgers.... those tasted how I want every cheeseburger to taste. Then headed back to Lahey in Burlington to get this bleeding catheter area fixed once and for all.
In the emergency room until 9:00 pm... they finally had decided to stitch it up and not just keep applying bandages to help the spot attempt to clot. Home at 10:00 pm... it was a long day.
My name is Bil... and I have kidney disease... and think I'll take the day off from work today.
I called my dialysis center and they told me to come right in. I waited there for about an hour as they got all of their first shift patients setup into their chairs for treatments. Then they inspected my bleeding chest, removed all of the old blood soaked bandages and redressed the wound. I was home just about 7:00, but as I tried to clean up some of the dried blood on my chest I noticed I started dripping again. Back to the center again... this time they said there's really not much they can do about it and it might just need some time to clot. They told me if it happened again.. just go to the emergency room.
Knowing I was heading down to Lahey Clinic I opted to just add some taped up paper towels to my chest to help absorb any blood flow. By the time I got to Lahey at 9:45 that towel had soaked through too and my newly designated dialysis shirt... a faded yellow Hawaiian shirt, was now sporting a few lovely red dots above my chest wound. I pointed out to the woman in the waiting room my issue and she had me brought into the ambulatory surgery pre surgery area to again remove the blood soaked bandages and attempt to repair the leak. They left me laying there because it seemed to bleed more if I was sitting up or standing.
Two hours later I was in surgery having my fistula added. I awoke from this procedure to a handful of medical personal standing around me and letting me know that they were going to get me a number to call to file an official complaint. I was completely confused.. had no idea what they were referring to. I asked them why and they said because of all of the issues I've been experiencing at Lahey over the last two months. Apparently the drugs they gave me to knock me out made me chatty and quite honest. I guess I told them all about how I've been really disappointed at the poor level of care I've received. I have no idea what I said... but they were all very concerned on my behalf. I felt pretty stupid sitting there guilty of having given them all a little "what for" but having no idea what I said.
Back in recovery I was given the run down of the things I would probably feel and things I would need to do to care for my new fistula and how my chest wound had been attended to and should be fine now as well. Meg and Annie showed up between 3:30 and 4:00 to pick me up. We left and started traveling north on 95 towards Newburyport when we decided to stop for burgers at Five Guys... none of us had eaten there yet. On our way there on Route 1 in Saugus I discovered the wound was bleeding again.. this time leaving a big red patch on my dialysis shirt. We stopped in to a CVS... bought our own gauze and patch materials and swapped out the bloody dressing for a new clean one. Went to Five Guys, ate our burgers.... those tasted how I want every cheeseburger to taste. Then headed back to Lahey in Burlington to get this bleeding catheter area fixed once and for all.
In the emergency room until 9:00 pm... they finally had decided to stitch it up and not just keep applying bandages to help the spot attempt to clot. Home at 10:00 pm... it was a long day.
My name is Bil... and I have kidney disease... and think I'll take the day off from work today.
Saturday, June 1, 2013
23 Hours
So the decision was made on Tuesday of this past week that it was time to start dialysis. I was scheduled for a 23 hour observation on Thursday into Friday. My day on Thursday started with a 1:00 arrival at Lahey Clinic and a 2:00 procedure to install a catheter into my upper right chest, just below the neck. This is my new port to my robotic kidneys... A.K.A. the dialysis machine.
I have no memory of the procedure... the drugs had me off in sleepy land. I awoke to the most incredibly itchy scalp... insatiably itchy... back and forth my hand traveled from one side to the other but nothing satisfied that itch. Turned out i'm allergic to one of the drugs they gave me. My head was covered in hives. Still in a semi state of hallucination I felt like what I imagine is how it feels to be a caterpillar exiting the cocoon. At first my entire body was covered in blankets. I think I asked the doctors if my head was under blankets... I couldn't quite grasp where I was or why or how... I only knew I was covered in blankets or at least suspected as much and knew that my head was itchy beyond the ability to scratch it to satisfaction.
I remember being asked not to do something that I was doing.... but I have no memory of what it was that I was doing. I noticed too that I had the most incredible case of jimmy leg I've ever had. There must have been something to that because they strapped what looked like inflatable swimming devices to my legs and then hooked them into a little machine that would blow them up and then release the air, essentially massaging my legs through a series of pressure applied in various chambers of the inflatable devices.
Eventually I returned to reality and was brought to a room where I would spend the night so I could receive my initial dialysis treatment in the morning. Having gone without food since dinner the night before I was incredibly hungry. I ordered up some dinner, ate, watched an episode or two of Arrested Development on my laptop and then attempted to sleep the night away. Unfortunately the nurses were in and out of my room all night... poking, prodding, inspecting, talking to me, changing my bandages and generally annoying the heck outta me.
Breakfast at 7:30 while watching another episode of Arrested Development, it wasn't long before they moved me down into the dialysis room for my first treatment. As they wheeled me down the aisle towards the room I could hear the faint cries of a person in distress as it rose in a crescendo of desperation before tapering off to a faint moan. This pattern repeated for the next two and half hours. My entire first dialysis session was played out to the sound of Mr. Flynn crying for help. I mostly tried to ignore it while I watched a few more episodes of Arrested Development.
Back in my room I had hoped to be released almost immediately. The nurse told me that was highly unlikely... so I ordered up some lunch and watched another episode of AD. while eating, the nurse came in and said "I lied, it looks like they're releasing you." Alas... this news came 15 minutes too late... Meg couldn't leave Newburyport and get to Burlington to get me and get back in time to get Annie at the bus stop... so it was decided I would have to wait until after Annie was out of school before I would be picked up.
Tired of all that AD I just closed my laptop and my eyes and slept the next couple of hours away. Meg arrived to pick me up around 4:30... just in time for the evening commute. So we trekked over to the Burlington Mall and had some dinner at the Cheesecake Factory.
And so goes the day in the life of a regular guy with kidney disease.
My name is Bil... and you know what I normally say here. (wink)
I have no memory of the procedure... the drugs had me off in sleepy land. I awoke to the most incredibly itchy scalp... insatiably itchy... back and forth my hand traveled from one side to the other but nothing satisfied that itch. Turned out i'm allergic to one of the drugs they gave me. My head was covered in hives. Still in a semi state of hallucination I felt like what I imagine is how it feels to be a caterpillar exiting the cocoon. At first my entire body was covered in blankets. I think I asked the doctors if my head was under blankets... I couldn't quite grasp where I was or why or how... I only knew I was covered in blankets or at least suspected as much and knew that my head was itchy beyond the ability to scratch it to satisfaction.
I remember being asked not to do something that I was doing.... but I have no memory of what it was that I was doing. I noticed too that I had the most incredible case of jimmy leg I've ever had. There must have been something to that because they strapped what looked like inflatable swimming devices to my legs and then hooked them into a little machine that would blow them up and then release the air, essentially massaging my legs through a series of pressure applied in various chambers of the inflatable devices.
Eventually I returned to reality and was brought to a room where I would spend the night so I could receive my initial dialysis treatment in the morning. Having gone without food since dinner the night before I was incredibly hungry. I ordered up some dinner, ate, watched an episode or two of Arrested Development on my laptop and then attempted to sleep the night away. Unfortunately the nurses were in and out of my room all night... poking, prodding, inspecting, talking to me, changing my bandages and generally annoying the heck outta me.
Breakfast at 7:30 while watching another episode of Arrested Development, it wasn't long before they moved me down into the dialysis room for my first treatment. As they wheeled me down the aisle towards the room I could hear the faint cries of a person in distress as it rose in a crescendo of desperation before tapering off to a faint moan. This pattern repeated for the next two and half hours. My entire first dialysis session was played out to the sound of Mr. Flynn crying for help. I mostly tried to ignore it while I watched a few more episodes of Arrested Development.
Back in my room I had hoped to be released almost immediately. The nurse told me that was highly unlikely... so I ordered up some lunch and watched another episode of AD. while eating, the nurse came in and said "I lied, it looks like they're releasing you." Alas... this news came 15 minutes too late... Meg couldn't leave Newburyport and get to Burlington to get me and get back in time to get Annie at the bus stop... so it was decided I would have to wait until after Annie was out of school before I would be picked up.
Tired of all that AD I just closed my laptop and my eyes and slept the next couple of hours away. Meg arrived to pick me up around 4:30... just in time for the evening commute. So we trekked over to the Burlington Mall and had some dinner at the Cheesecake Factory.
And so goes the day in the life of a regular guy with kidney disease.
My name is Bil... and you know what I normally say here. (wink)
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