ESRD - End Stage Renal Disease
ESRD, or End Stage Renal Disease refers to kidney failure. Why they can't just call it that I don't know. ESRD occurs for a number of reasons, and affects patients of all ages. The two most common causes of renal failure in this country are hypertension (high blood pressure), and diabetes. Other major contributors include PKD (polycystic kidney disease) and glomerulonephritis.
My ESRD was caused by a disease called Berger's Disease or Immunoglobulin A Nephropathy (IgA Nephropathy). It is an auto-immune condition brought about by the IgA proteins in my body deciding they need to attack my kidneys.
It is not something I caught, rather is something I probably inherited. around 1998 I began showing signs and symptoms of something going wrong. Some basic blood-work showed that I was losing kidney function. It was then decided that I should have my kidney biopsied to figure out conclusively what was going on. This was a week before I was scheduled to move to Germany to apprentice in the Schimmel piano factory.
The results came back positive, which was devastating. I was only 20 years old, and diagnosed with a disease likely to cause my kidneys to fail.
It was decided that because the deterioration of my renal function was slow, I should go ahead and move overseas. I completed my apprenticeship and a year later was back in the U.S. staring down the very real possibility of complete kidney failure. We quickly began testing for a possible transplant, and my Mother was approved shortly thereafter. In November of 2000, I received a kidney transplant from my gracious Mother, and 4 days later was back home (just in time for Thanksgiving).
Unfortunately a year and a half later the transplanted kidney rejected, and I again found myself in the hospital. As my kidney rejected I was pumped full of all sorts of wonderful things to try to save it. This included solumedrol (the IV form of prednisone) and a special antibody treatment. Anyone who's ever had a high dose of prednisone knows what hell that can be. Well, this was a ridiculously high dose delivered intravenously, and I spent the night mumbling nonsense to my dear brother. Thank you Christian for being there and for listening to me in my steroid induced delusion. In the end I just began crying, after realizing that I wasn't saying anything that made sense.
I received similar treatments several times during the cyclosporin induced "rejection episodes" that occurred during the year and a half that I had the kidney, but none of them ever as intense as this one.
After being on the verge of death in the hospital for a few days, and then going bonkers on solumedrol, I was about ready to throw in the towel. Luckily a very special person had a talk with me and convinced me in a roundabout way that there was still something for me to do here.
Thank you Fr. Seraphim.
When I finally came to, there were a couple of catheters coming out of my neck. One on the left side for administering the antibody treatment, and one on the right to begin dialysis (apparently they didn't have a lot of hope in the treatment's ability to recover the kidney). For a few months I used that catheter, before finally having a permanent access created in my arm in the form of an A/V Fistula.
Hemodialysis Accesses
There are two main types of permanent access, the fistula and the graft. There are also temporary access options. Read the access module at kidneyschool.org for a clearer picture of how all this works.
They "gently place" a couple of 15 gauge needles in it 3 times a week, and I try my best to sit still for 4 hours while they clean my blood.
The machines change depending on the clinic, but most are pretty similar (though I've been on some scary old ones before). Basically the blood travels out one needle, and down a tube to a large filter. It then travels down tiny tubules through the filter where a "bath" on the outside removes toxins and liquid from the blood via reverse-osmosis. It is then pumped along another tube, and back into the body through the second needle. In one treatment I might have ~100 liters of blood processed. With only about 5 liters of blood in my body, this means all of my blood (theoretically) is being processed 20 times or so.
Thankfully I have most of the important things right at my fingertips: my laptop, a Wi-Fi connection, and cable TV. This isn't always perfect though (like right now Walker Texas Ranger is on). There are about 10-12 patients with me at any one time, and as I am on the third shift the herd seems to thin throughout the night. There might only be two people on when I get out of here.
Without kidney function any liquid I put into my body just becomes part of my blood volume. This means that my blood pressure steadily rises between treatments. It also means that my blood pressure crashes at treatment after all that liquid gets pulled out.
This makes for some intersting nights, as I forget very simple things, can't think straight, and sometimes get "static" in my field of vision. I'm sure my wife can tell you how bad this is more than I can, because she's the one who has to deal with me acting like a moron.
What's the Future Hold?
Good question.
For now I am waiting for another kidney transplant. I am officially listed again, and await a cadaveric transplant unless a living donor becomes available.
Several people have offered to be tested to donate, but really I'm hesitant to go through this. Having done all of this once before, it's hard to head into it again knowingly. Also, I consider it a gift too big to receive. I kind of figure that I will deal with what I am dealt, and I don't want to drag anyone else into it with me, even if they desire to. It's a hard thing to accept from someone. For now I continue to cope, and ultimately do my best to enjoy life, and to help those around me enjoy it to the fullest.
check back for updates
ESRD, or End Stage Renal Disease refers to kidney failure. Why they can't just call it that I don't know. ESRD occurs for a number of reasons, and affects patients of all ages. The two most common causes of renal failure in this country are hypertension (high blood pressure), and diabetes. Other major contributors include PKD (polycystic kidney disease) and glomerulonephritis.
My ESRD was caused by a disease called Berger's Disease or Immunoglobulin A Nephropathy (IgA Nephropathy). It is an auto-immune condition brought about by the IgA proteins in my body deciding they need to attack my kidneys.
It is not something I caught, rather is something I probably inherited. around 1998 I began showing signs and symptoms of something going wrong. Some basic blood-work showed that I was losing kidney function. It was then decided that I should have my kidney biopsied to figure out conclusively what was going on. This was a week before I was scheduled to move to Germany to apprentice in the Schimmel piano factory.
The results came back positive, which was devastating. I was only 20 years old, and diagnosed with a disease likely to cause my kidneys to fail.
It was decided that because the deterioration of my renal function was slow, I should go ahead and move overseas. I completed my apprenticeship and a year later was back in the U.S. staring down the very real possibility of complete kidney failure. We quickly began testing for a possible transplant, and my Mother was approved shortly thereafter. In November of 2000, I received a kidney transplant from my gracious Mother, and 4 days later was back home (just in time for Thanksgiving).
Unfortunately a year and a half later the transplanted kidney rejected, and I again found myself in the hospital. As my kidney rejected I was pumped full of all sorts of wonderful things to try to save it. This included solumedrol (the IV form of prednisone) and a special antibody treatment. Anyone who's ever had a high dose of prednisone knows what hell that can be. Well, this was a ridiculously high dose delivered intravenously, and I spent the night mumbling nonsense to my dear brother. Thank you Christian for being there and for listening to me in my steroid induced delusion. In the end I just began crying, after realizing that I wasn't saying anything that made sense.
I received similar treatments several times during the cyclosporin induced "rejection episodes" that occurred during the year and a half that I had the kidney, but none of them ever as intense as this one.
After being on the verge of death in the hospital for a few days, and then going bonkers on solumedrol, I was about ready to throw in the towel. Luckily a very special person had a talk with me and convinced me in a roundabout way that there was still something for me to do here.
Thank you Fr. Seraphim.
When I finally came to, there were a couple of catheters coming out of my neck. One on the left side for administering the antibody treatment, and one on the right to begin dialysis (apparently they didn't have a lot of hope in the treatment's ability to recover the kidney). For a few months I used that catheter, before finally having a permanent access created in my arm in the form of an A/V Fistula.
Hemodialysis Accesses
There are two main types of permanent access, the fistula and the graft. There are also temporary access options. Read the access module at kidneyschool.org for a clearer picture of how all this works.
They "gently place" a couple of 15 gauge needles in it 3 times a week, and I try my best to sit still for 4 hours while they clean my blood.
The machines change depending on the clinic, but most are pretty similar (though I've been on some scary old ones before). Basically the blood travels out one needle, and down a tube to a large filter. It then travels down tiny tubules through the filter where a "bath" on the outside removes toxins and liquid from the blood via reverse-osmosis. It is then pumped along another tube, and back into the body through the second needle. In one treatment I might have ~100 liters of blood processed. With only about 5 liters of blood in my body, this means all of my blood (theoretically) is being processed 20 times or so.
Thankfully I have most of the important things right at my fingertips: my laptop, a Wi-Fi connection, and cable TV. This isn't always perfect though (like right now Walker Texas Ranger is on). There are about 10-12 patients with me at any one time, and as I am on the third shift the herd seems to thin throughout the night. There might only be two people on when I get out of here.
Without kidney function any liquid I put into my body just becomes part of my blood volume. This means that my blood pressure steadily rises between treatments. It also means that my blood pressure crashes at treatment after all that liquid gets pulled out.
This makes for some intersting nights, as I forget very simple things, can't think straight, and sometimes get "static" in my field of vision. I'm sure my wife can tell you how bad this is more than I can, because she's the one who has to deal with me acting like a moron.
What's the Future Hold?
Good question.
For now I am waiting for another kidney transplant. I am officially listed again, and await a cadaveric transplant unless a living donor becomes available.
Several people have offered to be tested to donate, but really I'm hesitant to go through this. Having done all of this once before, it's hard to head into it again knowingly. Also, I consider it a gift too big to receive. I kind of figure that I will deal with what I am dealt, and I don't want to drag anyone else into it with me, even if they desire to. It's a hard thing to accept from someone. For now I continue to cope, and ultimately do my best to enjoy life, and to help those around me enjoy it to the fullest.
check back for updates