After all this time getting dialyzed, there are still surprises out there. A couple of weeks ago, it was the flood of blood that was unleashed after I thought the needle site had clotted. This week it was major clotting going on inside the dialysis machine.
They give generous amounts of Heparin to prevent clotting during the process, but apparently, its not enough. For the past two weeks, they've been using two needles on me and after about 2 hours, the machine starts beeping incessantly. The techs mess with the needles; pushing, prodding, rotating, like some kind of sharp stainless TV antenna. I half expect them to get out the tin foil. "Hold it right there Leslie, I'm picking up Ed Sullivan"
Soon, they'll be increasing the size of the needle that they use from painful to really painful. I'm hopeful I can convince the doctor to pull this catheter out of my chest the next time I see her, since the dialysis is going so well. In reality, she'll probably send me to the hospital for them to remove it, but you get the idea.
I don't know how people "do" dialysis. I've only been doing this for a couple of months, but the routine is getting old. It's kinda like detention or maybe incarceration might be a better word. Hi DAD, I'm in JAIL. Say hello to MOM!
I know very little about the dialysis process, but the tech's ask me questions like, "Is 250 fine?"
If you're going to give me 250 dollars sure; otherwise, I have no idea what you're talking about. (props to my Mother-In-Law for that joke). Finally, someone explained what they meant by that number (I think). It's the "flow rate" of the machine...I have no idea what units its in, I have no idea what a good flow rate is...They tell me that with the small needles they're using, 250 is probably the maximum. If they drop the flow below 250, I won't be adequately dialyzed.
I like to know what's going on and be involved, especially if they're going to ask me questions about how I like my treatments, but when they second guess my answers, that ticks me off. Last night, my weight was 71.6 kilos (157 pounds for the metrically challenged) that's about what I should normally weigh.
They set a target weight of 67 kilos (147) for me about a month ago. So, the tech wanted to pull off 10 pounds of fluid to get me to that target weight. Unt uh, ain't gonna happen sister. Did I mention dialysis was more voodoo than science? They arrive at the target weight by trial and error...mostly error. At each session, they lower my weight a little bit more until I start cramping. When I'm cramping up, I've hit my target weight. 67 kilos was all well and good when it was summer and I was wearing shorts, t-shirt, and flip flops, but I think they need to add a little weight for the jeans, belt, and shoes...So I tell the tech my weight and she asks how much she should pull off. I say, "3 kilos" instead of 5 and she kind of backs away and goes to the nurse. I can see them across the room, they're talking in hushed tones, occasionally glancing over at me...Then the nurse comes over a) You're gaining to much weight between sessions b) if we leave too much fluid in you it would not be good. ("tell him about the twinkie"). We argue for about 15 minutes I say, "I know my body" they say, "not as well as the machines do". Finally I say what they want to hear so that they'll raise my target weight, "I cramp at home." Which is true, but in my mind irrelevant to the argument. They asked me a question, I answered, they argued with me until they got the answer they wanted.
Everything was routine tonight at dialysis. They bandaged my arm, I held pressure for 3 minutes. I stood up and they took my blood pressure. I then walked over to the scale and weighed myself. I then started packing my bag and felt a warm liquid sensation flowing down my arm. I looked down and there was a flood of crimson blood pouring out from under the bandage where the arterial needle was placed. The bandage was soaked, I was dripping everywhere. I immediately applied pressure and the nurse and tech immediately wrapped my arm with big absorbent pads.
I'm guessing when I started stuffing stuff in my bag, I popped the clot. Ooops. Live and Learn.
I think my Nephrologist and I are going to have a problem. I didn't want to switch doctors for a reason. My old doctors know what medications worked for me. If you've been reading for a long time, you may have seen that I sometimes get the least likely side effect of a medication. For most people, when you hook them up to dialysis, their blood pressure goes down; but not me...Why do I have to be different?
I have a Mechanical Engineering degree from Stevens Tech. Although, this trend is so obvious, my kid could probably figure it out. I looked over the data for my first 6 dialysis treatments and my ending blood pressure was greater than my starting blood pressure on all 6 occasions (sometimes by a lot, once by a little). That trend continues to this day, so when the nurses turn to each other and say, "his blood pressure is running high, let's pull more fluid off him..."
because I know I'm going to leave, not only dehydrated, but with a splitting headache from the high blood pressure.
My new nephrologist asks me what my blood pressure's like at home, in between treatments; as if my blood pressure magically drops the day after treatment, but rises on dialysis days (or the reverse, it magically jumps off the charts on off days, but settles back down for dialysis days).
She hasn't given me an adequate explanation as to why my blood pressure is high in the first place. I realize some meds just work, but I also recognize some meds solve a specific problem. Diovan blocks a specific chemical called Angiotensin. Metoprolol is a Beta blocker. She's been trying to get my blood pressure under control, so she's prescribing meds, Diovan was a bust, it makes me sleepy, now she wants me to try Micardis. She says it won't affect my blood pressure at all, probably won't make me sleepy (but it's very similar to Diovan), but it will be good for my heart.
Really!?! Cheerios are good for my heart, don't lower my blood pressure, and don't make me drowsy, maybe I should up my dosage...
Hella Painful. They used two needles today. This was the second time I've had two needles. There was a lot of adjusting, and moving going on. After about an hour, I couldn't stand it any longer and asked them to remove one of the needles. The pain continued. My fistula is still small, so any movement of my arm caused me more pain and caused the machine to go nuts. Now, the pain wasn't very intense, but it was constant.
My blood pressure is high and the dialysis machine is stupid, so it would run the pressure up and start back down. When it realized it didn't go high enough, it would restart, bumping the pressure up another 20 psi. Rinse and Repeat...It felt like I had a tourniquet on for 5 minutes at a time.
The pain was making me angry and of course, my blood pressure went up even further. I think I need to rethink this whole dialysis thing...
I have a dilemma, it's actually a logic puzzle, but it uses an arcane branch of logic practiced only by Verizon Tech Support monkeys in India. The electrician wired my house with Coax for cable, but didn't give me any guidance as to what cables go to what rooms. So, I have 6 cables that appear in my utility room and two in my bedroom where I want the TV. I put connectors on one of the cables in my bedroom, then I went to my utility room and eventually plugged each wire into my Verizon Fios router.
I tried quick and dirty, I tried rebooting the router, I tried rebooting the Set Top Box (STB), but nothing was working. I went online and asked the Verizon Virtual Agent, but it told me to rephrase my question. I asked again and it said, "If you are interested in Verizon Fios, First see if it is available in your area." And it gave me access to pages that would check for service in my area. I asked it, "What is the meaning of life?" and it said, "If you are interested in Verizon Fios, First see if it is available in your area." I then typed in "54" and it got confused. I typed in "42" and it said, "Let me get you some help" I should have asked it where Wonka hid the last golden ticket...
Here's the logic puzzle. According to the monks at Verizon. The "Coax LAN" indicator on the router will light up green whenever a coax cable is plugged in to the box. Out of 6 wires that I plugged in to the router (plus a short spare I had lying around) only 2 light up. What does that mean? If a cable gets plugged in but there's no light is it really a cable? Or do we assume it has changed, morphed into something different, something beyond itself? I posed the question to the Verizon Virtual Agent and it replied, "How about a nice game of Chess?"
I got on the phone with another Verizon Tech Support Monk who kept asking me if I was plugged in to the wall. It goes from the TV, to the STB, to the router. Why is the signal not getting through. I haven't done anything fancy, I even bypassed the splitter. Verizon Monk: Your system wasn't set up to run straight from the router, you need to wire it through the splitter. So, I'm wondering why a splitter is necessary to the wiring diagram, but I rewire it anyway. Still nothing. That's when the Monk asks me if I"m plugged in to the wall. Huh? I haven't put any wall plates in, I'm running everything direct right now to make sure it works before I put the wall plates on. Verizon Monk: But it has to be plugged in to the wall plate. I'm clearly not getting it until he says the TV feed does not come through the router. It comes through a coax connection from the street. The router only supplies the interactive functions.
AHA! That was the missing piece. The splitter needs to be plugged in to the router and to this dedicated coax line from the street, before splitting off to the STBs and the TVs. Verizon advertises 100% Fiber Optic. To Quote Inigo Montoya, "I do not think that means what they think it means."
My last tank of gas lasted 574 miles, which worked out to be 39 mpg. That's 133 miles further than I would normally get. I think I was a bit too aggressive getting up to speed on that tank, so I've been driving "gentler" on this new tank.
I have been noticing more of a gasoline smell around the Cav while it's been running lately and with the Cav rolling past 202,000 miles, its possible there is a problem developing with the engine.
I reached a milestone today. For the first time in 8 years, I am no longer taking Cellcept. My doctors started tapering me off it a month ago and yesterday was my last day on it. Today I am Cellcept free. An unfortunate side effect of being on Cellcept is that I haven't been able to eat grapefruit or drink grapefruit juice in 8 years. That's all over now.
Soon, they'll taper me off Prednisone, the corticosteroid I dislike greatly. Once I'm off prednisone, the only medications left will be for blood pressure. Once I get this Catheter out, I'll be able to reduce my blood pressure through exercise and I'll be able to get rid of most of those meds as well.
They give me a number of medications while I'm dialyzing. They just shoot the stuff directly into the tubing, saving me from having to take it orally or having to get injected again.
They give me EPO, to stimulate my bones to make red blood cells. They give me Iron so that my bones can build red blood cells. When they inject the iron, I get the sensation that I'm smelling and tasting something. It's kind of like soy sauce but also kind of smokey. Its overpowering and its nasty.
I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.