Post 7, 7/25/09, 1200, Living with end-stage renal disease
No photos this time--taking a lunch break. I also need to do laundry and start pizza dough and maybe make bread sometime today.
Anyway, of all the random diseases I could have come down with, there are lots that would have been much worse. As it was I didn't have to spend any time living with the gradual kidney failure and dreading going on dialysis--by the time I hauled myself into St. Vincent's ER (quoth a nurse: "I can't believe you're still ambulatory.") I was at 0% kidney function, and not too far from heart failure from the excess fluid that had built up due to lack of kidney function, so I was presented with a simple choice: you go on dialysis and probably make it, or you don't and you don't.
So anyway I went through the excitement that is hemodialysis, and plasmapheresis (and kept having allergic reactions to SOMEthing in the plasma, and spent my 26th birthday drugged out of my head due to a really bad one that day), and various minor surgeries and tests. A month later I was released from the hospital, and right around my birthday went on peritoneal dialysis instead of hemo. Almost six years later I got a transplant (there are a bunch of public entries on that starting somewhere around here), and here I am today.
Living with kidney failure... could be a lot worse. Besides the whole dialysis thing, it involves a lot changes to your diet. The changes aren't as drastic when you're on peritoneal dialysis, but I still ended up on a very low-sodium diet because besides filtering out waste, the kidneys also regulate your blood pressure, cause your body to make red blood cells, regulate some hormones, and stuff I'm sure I've forgotten. It's one of those "don't know what you've got 'til it's gone," things.
Luckily for us (since I was on a low-sodium diet, so was mebil) I had started cooking a couple years earlier, so adjusting wasn't so bad (a big thing is cutting out pre-fab food); we started experimenting with lots and lots of spices and herbs and all that other stuff.
Sodium substitute, you say? NOT WORTH IT. It tastes like ass, and one of the things you have to be very careful is your potassium, which is the main component in sodium substitute. Too much potassium is very bad for your heart. Too little potassium is... very bad for your heart. Considering the state of my heart anyway, I wasn't fooling around with it. I wasn't that desperate for the taste of salt anyway. :P
Also you get lots of drugs when your kidneys give out. Not the interesting kind, alas, nor the kind you can sell on the black market. (Though as much as they charge you for Epogen you'd think you were buying it from the black market.) You see your nurses a lot, and lucky for me I love mine. You also have the privilege of being the only exception to Medicare that there is. This is kind of a double-edged sword, of course, because besides paying taxes on your income to pay for it, there's also a premium! And Medicare only pays 80% of your care! I had COBRA for the first while, and then ended up on Medicaid for a year or two, and now I have insurance through work, which covers what Medicare doesn't. And if you end up in this situation you'd better know your stuff when it comes to your Medicare and insurance because the company/government reps themselves don't know how to handle you--the rules are different for ESRD Medicare patients.
And it's almost time for the next post. Time to eat and answer some comments!
Anyway, of all the random diseases I could have come down with, there are lots that would have been much worse. As it was I didn't have to spend any time living with the gradual kidney failure and dreading going on dialysis--by the time I hauled myself into St. Vincent's ER (quoth a nurse: "I can't believe you're still ambulatory.") I was at 0% kidney function, and not too far from heart failure from the excess fluid that had built up due to lack of kidney function, so I was presented with a simple choice: you go on dialysis and probably make it, or you don't and you don't.
So anyway I went through the excitement that is hemodialysis, and plasmapheresis (and kept having allergic reactions to SOMEthing in the plasma, and spent my 26th birthday drugged out of my head due to a really bad one that day), and various minor surgeries and tests. A month later I was released from the hospital, and right around my birthday went on peritoneal dialysis instead of hemo. Almost six years later I got a transplant (there are a bunch of public entries on that starting somewhere around here), and here I am today.
Living with kidney failure... could be a lot worse. Besides the whole dialysis thing, it involves a lot changes to your diet. The changes aren't as drastic when you're on peritoneal dialysis, but I still ended up on a very low-sodium diet because besides filtering out waste, the kidneys also regulate your blood pressure, cause your body to make red blood cells, regulate some hormones, and stuff I'm sure I've forgotten. It's one of those "don't know what you've got 'til it's gone," things.
Luckily for us (since I was on a low-sodium diet, so was mebil) I had started cooking a couple years earlier, so adjusting wasn't so bad (a big thing is cutting out pre-fab food); we started experimenting with lots and lots of spices and herbs and all that other stuff.
Sodium substitute, you say? NOT WORTH IT. It tastes like ass, and one of the things you have to be very careful is your potassium, which is the main component in sodium substitute. Too much potassium is very bad for your heart. Too little potassium is... very bad for your heart. Considering the state of my heart anyway, I wasn't fooling around with it. I wasn't that desperate for the taste of salt anyway. :P
Also you get lots of drugs when your kidneys give out. Not the interesting kind, alas, nor the kind you can sell on the black market. (Though as much as they charge you for Epogen you'd think you were buying it from the black market.) You see your nurses a lot, and lucky for me I love mine. You also have the privilege of being the only exception to Medicare that there is. This is kind of a double-edged sword, of course, because besides paying taxes on your income to pay for it, there's also a premium! And Medicare only pays 80% of your care! I had COBRA for the first while, and then ended up on Medicaid for a year or two, and now I have insurance through work, which covers what Medicare doesn't. And if you end up in this situation you'd better know your stuff when it comes to your Medicare and insurance because the company/government reps themselves don't know how to handle you--the rules are different for ESRD Medicare patients.
And it's almost time for the next post. Time to eat and answer some comments!