KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I need dialysis to stay alive, and I'm an independent cuss. I decided to do it at home to keep my independence as best I can. I have done or know about pretty much every type of home dialysis that there is, and in this diary, we'll discuss home dialysis and its various modalities. We'll cover its good points and bad points as I understand them, and if you have questions, I'll do my best to answer them.
First off, let's get one thing straight. If you have chronic kidney disease or end stage renal disease (which I do), there isn't any cure. A lot of people think that a kidney transplant is a cure; it is not. There are only treatments, and a transplant is one kind of treatment. For me, it is the best possible kind of treatment, the one that will do the most toward giving me my life back, but even if it comes from a living donor, it's still not a cure. (And if you're interested in finding out about donating to me, please email me - my email's in my profile - and I'll get back to you ASAP.)
And another thing: dialysis frankly sucks. I'm not going to sugarcoat that. It really does. If it's not one kind of suckitude, it's another. But it's what I have to do to stay alive and I've decided it's worth it. That decision is an individual one and by law, I have the right to make it for myself. Deciding not to dialyze, or to stop dialysis, is legally not suicide. All it is is a refusal of treatment and I retain that right by law no matter how long I've been on dialysis. I even have the right to stop and restart if I so choose.
When you start dialysis is a matter between you and your nephrologist, your kidney specialist. If you have chronic kidney disease, you may or may not ever need dialysis; it depends on how bad it is. A lot of people have no idea that their kidneys are failing until they wind up in the emergency room, are diagnosed with end stage renal disease (ESRD), have an emergency catheter installed, and are dialyzed in the hospital. It's a shock! Some of us have more warning and know it's coming. I was pretty ill with failing kidneys when I started dialysis, but I'd been feeling worse and worse for almost a year when I started dialysis, and one reason I started when I did was that my nephrologist said he wanted me to have no more bad days. Some people wait until their creatinine, a measure of how much toxic material has built up in the bloodstream, is as high as 9 or 10. I don't think I would have lasted that long and mine wasn't above 3 when I started. It's still hovering at less than 5, but has been as high as 7.5 at times. I was sicker than a dog before I started dialysis and was hoping for some relief.
One site I relied on heavily was Home Dialysis Central, run by a woman named Dori who is now a friend of mine. She also runs the fantastic site Kidney School, where those of us who have Been There always send new people who have questions about kidney disease, diet, dialysis, and the like. Dori really provides an amazing public service with these sites. Another, where I went to read about patient experiences with different kinds of dialysis, is I Hate Dialysis, where you can hear first-hand from patients about day to day life on dialysis. That site is a community in the same way that Chronic Tonic or KosAbility is. If you're dealing with dialysis questions, that's a great place to get them answered by other laymen who have Been There and know what you're facing.
I researched dialysis methods for months and settled on either home hemodialysis or peritoneal dialysis as my first choice, deciding on peritoneal dialysis because it didn't involve blood or needles. I don't particularly squick at needles, but I don't enjoy them, either, and wanted to avoid them if I could. When I found out that peritoneal dialysis uses no needles, that sounded like a good idea to me. I didn't know quite how it would look on me, though, and although I was mentally OK - I thought! - with the idea of having a catheter in my abdomen, I was hardly prepared for what it was actually going to be like. When I told my nephrologist I wanted to do PD, as we abbreviate peritoneal dialysis, he approved, so I was scheduled for surgery to implant the catheter.
Recovery hurt like hell. I had it removed the day after I was kissed for luck in surgery by President Obama, and it didn't hurt all that much, but still wiped me out for the weekend. At least that is over with now.
I wasn't prepared for the fact that the catheter, which I had never seen depicted stretched straight out, was about seven inches long, nor for the fact that a week after it was put in, another five or six inches and a hard blue and white plastic end about 3 1/2" long and about 3/4" in diameter would be added to what I already had. I wish I'd seen a picture of that before I got it in. I hadn't, and I really was unprepared, especially for having my entire mental image of myself shift because of that thing. But I can help you in this regard if you have to have one: I can show you a picture of what it looks like coming out of me. I am not a tiny woman at 5'7" long, so bear my size in mind when you look at these pictures. It would look like a much larger thing on a smaller person.
Peritoneal dialysis uses your peritoneal cavity, the cavity that holds your abdominal organs, to dialyze. You fill that cavity up with fluid that contains a percentage of dextrose or maltose, and by osmosis, the toxins are drawn across the peritoneal membrane and into the dialysate fluid. You leave it be for several hours, a process called a dwell, and then drain it out and put in fresh fluid. That's called an exchange. Filling up and draining the cavity is what you have a catheter for. You'll hear warnings about infections and how easy it is to get one, especially peritonitis, which can land you in the hospital for a couple of weeks, but in my experience and the experience of many others, if you follow the procedures you're taught to the letter, you won't have any problems with infection.
There are two different ways to do PD. One's called CAPD, or Continuous Ambulatory Peritoneal Dialysis, and the other's called CCPD, or Continuous Cycling Peritoneal Dialysis. In CAPD, you perform several exchanges over the course of your waking time, with the first one coming right after you awaken and the last one taking place at bedtime. You usually do four exchanges in a day. In CCPD, you hook up to a machine called a cycler at night and it does most of your exchanges for you while you're asleep. You are often prescribed an additional daytime exchange, to be done around midday, but it's possible to get away without one. Some nephrologists leave their patients empty during the day so they aren't walking around full of solution all the time; not mine. I found out from other patients about a fluid called Icodextrin, though, which uses maltose instead of dextrose, is a lot lower in calories (since the dextrose or maltose does cross the barrier to some degree), and stays in all day until bedtime, and asked about it. I was approved for it and almost never had to do a daytime exchange again. That freed up my days for being active.
Another thing I was told, this time by my nephrologist's nurse, is that I could not go swimming (true, but there's an exception and a workaround), take a bath (true, but there's the same workaround), sit in a hot tub (true), and would have to get rid of my pets, especially the cats (not at all true, pets just can't ever be in the room where you dialyze). The exception to swimming is that you're allowed to swim in the ocean, but the ocean and Puget Sound are way too cold for me to enjoy swimming in either, so I haven't been swimming in three years. I haven't been kayaking, either, for the same reason. There are a lot of nice lakes near me but I cannot swim or stick a kayak in any of them for fear of infection. The workaround is that I can use Tegaderm, a transparent, waterproof wound dressing, to cover my entire catheter area and exit site, making it impermeable to water where it's covered. A piece of Tegaderm that will cover the whole thing is available to me over-the-counter at specialty drug stores that serve hospitals; the piece I need is 12"x10" and one piece, to be used only one time, costs $16. No insurance will cover it; they consider it to be an adhesive (it is not). But the workaround is there if I need it. I have used several smaller pieces, usually four, to cover my entire catheter and take a bath if I am really cold.
I was heartbroken at the thought that I would have to rehome our beloved dogs and cats, but luckily I talked to the nice people at Patient's Pride, the company makes the catheter support system I have used, and found out that that was not necessary. The only thing that I had to change was where the dogs slept. They could no longer sleep in the bedroom, since I was dialyzing in there; in fact, they weren't allowed to go in there at all. They were changed to sleeping downstairs in their individual crates, and since I had crate-trained them when they were little puppies, they didn't mind at all, especially since we rewarded them with dog cookies when they got into their crates. The one who minded most was me! I never stopped missing them. The first change we made when I stopped doing PD was to let the dogs sleep in the bedroom again. The cats didn't have to be rehomed any more than the dogs did, and are still sleeping on the couch. (By the way, I can't recommend this company's products enough, and if you go to the Store link and click on the "5 Simple Steps" video, the testimonial you hear is me. I volunteered to do this and was not compensated in any way for it. I wore their bands from December 2007 to the day the catheter was removed. If you have any kind of catheter tube, this is the place to go, not just for dialysis catheters. Thank goodness I got their 5 Simple Steps book; one of the things that's in it is where to have your catheter placed, and another is how and why you DO NOT have to rehome your companion animals, and good reasons not to.)
One thing I wasn't prepared for was the amount of weight I gained. I used dextrose formula at night for doing my nighttime exchanges on the cycler, and I'm apparently quite sensitive to it in that it made me gain a lot more weight than just about anybody else. The maximum I'd heard about from other patients was a gain of 20 pounds, and that was extraordinary. In the 2 1/2 years I did PD, I gained 50 pounds, all of it from dextrose calories, not one of them from eating too much. That's something I am hoping to get rid of now that I am off PD and wholly on hemodialysis.
One of the best things about any kind of home dialysis, in my mind, is that I'm the one responsible for my health. I don't need to leave it in others' hands. It's a lot more work, true, but since we are doing set-up, clean up, and running the system, we have control over every step of the process. I don't have to worry that a patient with germs that are foreign to me was touched by the person working on me just before s/he touched me and that s/he cut corners and didn't wash, use hand sanitizer, and/or change gloves just prior to coming to me. The techs at the dialysis center I went to while I was first getting my access accustomed to being used for dialysis are good, conscientious, and I've never seen one cut corners, but you don't know for sure and I, like many, hesitate to ask them if they've followed proper procedures if I haven't actually seen what they do. And then, the equipment is common, and I know they all touch patients and then touch the same couple of computers, so germs can be transferred. I would honestly rather do it myself, with all the extra work, than entrust my health to others.
Hemodialysis is a different thing, and there are several ways to do home hemodialysis: you can do it three days a week, like is done in a dialysis center; you can do short daily (or near-daily) sessions, which is what I'm doing now; or you can do nightly (or near-nightly) nocturnal hemodialysis, also called extended, which is low-speed, longer duration, and the world gold standard in dialysis. That's what I'm aiming for long-term until I get a transplant. It's as good as a transplant from a cadaver kidney at clearing blood toxins and is making me wonder if I ought to do it for life if none of my potential donors work out. (There are a few, all Kossacks, and you know who you are and that we cherish you.)
There are a few different types of access, which we generally refer to as our lifelines, as well. The best kind, the current gold standard, is an AV Fistula, which is created by a vascular surgeon by joining a vein and an artery together to create a super-vein in which blood flows both to and away from the heart. That's what I have, and mine's in my left forearm. I am right-handed, and the left is where my best veins are, too, which is why that was chosen. There's also a graft, where a piece of surgical tubing is spliced into the vein and artery and blood flows both ways through that; it's used in people who have smaller veins. Grafts are suboptimal compared to fistulas because fistulas can self-heal, and grafts generally never can. (There's a new exception to that, a type of tubing that does apparently self-heal. I heard about it from another dialyzor.) My veins are small, spastic, and they roll a lot. Poke them with needles or cut them with scalpels and they will do their utmost to collapse and hide. They also clot extra quickly, a family trait which can prove problematic for a dialyzor. The first surgeon I saw said that I couldn't get a fistula, only a graft. I got a second opinion and found I could indeed get a fistula, so I had it placed in May, 2008, and it hardly hurt at all. Two balloon angioplasties were done to it to clear up stenoses, or narrowings, of the artery and vein that feed it; those actually didn't hurt at all, either during or after surgery. My vascular surgeon is a wizard. Then there's a catheter, sometimes called a permacath, which is placed in the neck in the jugular vein leading right to the heart. This doesn't need needles but is terribly dangerous, as any infection will go straight into the patient's heart! It's best to avoid these if you can manage it. If you think dialysis is in your future, whether you've decided to do it at home with home hemodialysis or in a center, get your access placed early so it has time to mature, because it will take at least several weeks to get a fistula to maturity. With some people it takes a lot longer, like mine, which took two years. Since I was on PD, I had that time. A PD catheter is available for use much more quickly than that.
Since I am mentioning blood, even if you know nothing else about dialysis, you can assume that you need blood to do hemodialysis, and that's where the name comes from. You need blood, and if you've got an access that's anything other than a catheter, you need needles, too, big ones. The standard dialysis needle is a 15-gauge needle and you use two of them. For someone who uses a different part of their access to "go in" each session, a sharp needle is used each time. For someone who uses the buttonhole technique, which I use and which is preferred for home hemodialysis patients, you go into the exact same places each time, using a blunt needle. One needle draws my blood out of my body and into the dialysis machine, and the other puts it back. During a session, some 70 or more liters of my blood will be cleaned, but since the body only has about 5.64 liters of blood in all, that represents each liter going through the cleaning process multiple times. More dialysis is better; that's one reason to do it at home, because you can get more dialysis than the standard 3 times a week for 3-4 hours at a go that you get in a center. I know how much of my blood has been through the machine because it tells me at the end of a treatment. (On the other hand, too much dialysis is possible and it is bad because it can mess with your electrolyte balance, such as taking off too much potassium, which is bad for your muscles - like your heart, for example. Balance in dialysis is essential.)
I was in and out of PD training in 3 days, and each day they kept sending me home earlier. It took me 7 weeks to get out of home hemodialysis training (where the standard is a month), mostly because of access problems. On the other hand, by the time I got out I had that machine down cold. The machine I use is the first one designed specifically for home hemodialysis by a lay user. Since there are so many things that can potentially go haywire with hemodialysis, since I'm still pretty new at it (this is our third month at home), and since things that can go wrong go wrong awfully quickly, I'm still required to have my partner, who has become my care partner, here at home with me and available to me when I am dialyzing and during the entire process. Besides, he's a huge help. Hemodialysis training is not a trivial commitment. Besides my own training, which was 5 days a week for about 8-9 hours a day with no breaks and included a dialysis session each day, my beloved had to come in to be trained at least in emergency procedures, and wound up learning just about everything except how to place my needles. When it came to everything except giving me lidocaine injections, I taught him myself. The first day he came for training was his birthday.
I'm currently doing short daily, for 2 1/2 to 3 1/2 hours a day (the machine determines the time based on fluid to be removed, liters of dialysis fluid used, and pump speed) and am looking forward to moving to nocturnal later this month. My nocturnal training is scheduled for December 22-24, so I'll be moving to nocturnal, the best dialysis there is, as sort of a Christmas present from the clinic. For nocturnal, I will run a longer time at a slower pump speed, doing it at night while I am asleep. I thought I'd never be able to sleep with needles in my arm but have fallen asleep while on the machine already several times! I won't have to wake every half hour for checks at that point, either, and can just sleep.
What's involved in hemodialysis? Applying lidocaine/prilocaine (Emla) cream to where I'll be inserting needles and wrapping my arm with plastic wrap, or being injected with lidocaine directly at my sites by Charles, since I have become allergic to the Emla cream. Caring for my access. Sometimes needing lidocaine injections for needles. Having needles (one arterial, one venous) in my access and getting my blood cleaned by a machine. Being unable to move my access much while I'm on, sometimes unable to move it at all. Protecting my access because it really is my lifeline, which means coating the access area of my arm with a protective barrier fluid like Cavilon, since I am allergic to adhesives and do not want to get a weeping-sore rash from them at my sites. Giving up a significant amount of time to this process. What's involved in home hemodialysis that isn't necessary for dialysis in a center? Sticking needles in my own access. Setting up the machine. Cleaning up the machine. Operating the machine. Taking my vital signs and writing down venous pressure, arterial pressure, amount of fluid removed, time remaining, etc. every half hour. Correcting errors (a tech would do it in a center, but at home that's our job). Preventing errors in the first place, which is part of a proper set up job. Ordering and stocking supplies. A lot of this, everything except dealing with needles, is also required for PD.
If you don't think you can place your own needles, imagine doing it when it hurts less and see if that makes it more imaginable. That's what the Emla lidocaine/prilocaine cream is for. Dialysis patients teach each other how this is done. An hour or so beforehand, put a large dab on each place where a needle will be inserted, then wrap it up with plastic wrap. The instructions for the creams usually indicate that Tegaderm should be used for this purpose, but Tegaderm's expensive, not covered, and most of us are on disability so we use plastic wrap. Some people don't even need the cream once they've been doing this for a while. I have yet to have a day when I do not need it. Maybe I will be OK without it at some point, maybe not, but in any case, I have a prescription for the cream and I get more every month. I use it and am glad to have it. Another thing that helps is that I have fully developed buttonholes and can use blunt needles. I pick the scabs off (the only time this is permissible), and direct the needle down the channel that has been established in my dermis that leads directly into my access. A flap now exists in my access where the channel meets it; my dialysis training nurse describes it as a doggie door. As for the channel itself, it's a lot like pierced ears. Instead of the channel going in the front of the earlobe and out the back, the channel goes through the top of my skin and down through my entire skin until it reaches my fistula. I put something - in this case, a dialysis needle - into it and use my fistula to keep myself alive by circulating my blood through a filter called a dialyzer. I keep a sharp eye on the tubing my blood's circulating through, especially at first, because I need to make sure no air creeps into the system. A large enough air bubble - one as small as an inch long - can cause an air embolism, which can be fatal. If we see an air bubble we go into panic mode, and the panic button is the stop button. It looks like a stop sign and is easy to recognize even if something is going haywire. We've trained ourselves to push that first and ask questions only afterward.
The machine, the NxStage, is pretty good about generating alarms if something is going haywire. We have an extensive machine operating manual that tells us what each alarm is about, what might have caused it, and how to correct it step by step. There's a second part to this system, the PureFlow, which uses my good tap water to create sixty liters of solution that I use to dialyze over three days. The solution expires after 72 hours and 7 1/2 hours of that time is used to make and mix it, so if I have a day off on the second or third day, only two days worth will be used. Sometimes I choose to use 25 liters of solution on those days instead of 20. Today is the first day off after three days on. Charles will set up a new batch of solution tomorrow morning before he goes to work. Having this unit, which also serves as a base for the dialysis machine, means that I have to store fewer supplies. That's nice!
There are some great dialysis blogs out there, like Dialysis from the Sharp End of the Needle, and some excellent mailing lists as well, most of which I am a member of. I'm a co-moderator of the EndStageRenalDisease Yahoo group and a member in good standing of the Kidneykidneydisease and dialysis-support Yahoo groups. There's a lot of patient camaraderie and information sharing on all of these groups and if you or a loved one of any age is dealing with kidney disease, I recommend them all. Then there are the patient forums on IHateDialysis and Home Dialysis Central, both of which are top-notch. There's a lot of information and support out there for the home dialysis patient or for those considering home dialysis.
A real advantage to being willing to stick needles in your arm and live with a dialysis machine is staying healthier and generally more active. The track record of hemodialysis patients staying out of the hospital if they dialyze at home versus those who dialyze in a center is a lot better; I don't have stats but if you're interested, I'll see what I can find out. I do know that in-center patients are several times as likely to wind up in a hospital at any given time as home patients. Home patients are followed closely; don't think we're left alone to do everything ourselves. Nursing staff are available to us 24/7 to help get us out of jams. We go into clinic once a month for a visit with our dialysis nurse, dietitian, social worker, and physician. We're responsible for half-hourly, daily, and monthly record keeping. We draw our own blood for labs and send the lab tubes in a provided mailer or drive them to the lab ourselves (that's easier for me than waiting in line at the post office, as the lab is at my GP's office). Since we use the blood lines that will be used for our dialysis and already have the needles in, it's just as easy to draw it ourselves. We centrifuge it, too. All the equipment and supplies we need for all of this is rented to us at no charge to us; Medicare or our private insurance pays for it all.
Another thing to think about is Medicare. ESRD is the only condition that automatically gets you Medicare and when you get it depends on the dialysis you choose. If you go to a center first, you qualify for Medicare from the first day of the fourth month that you're on dialysis. If you start home dialysis training, you qualify from the first day of the first month that you are in training. It's an important consideration, especially if you don't have other insurance coverage. One reason I went with home dialysis from the word go is to get Medicare more quickly, despite having other coverage. Dialysis qualifies you for Social Security Disability, too, if it makes you no longer able to work. All of this is thanks to Congress, which decided in 1972 to pass legislation covering dialysis for everybody. (Some other time I'll go into the real-life death panels that existed before that time.)
So, basic modalities: PD and hemo. Breakdown of PD: CCPD and CAPD, with no days off. Breakdown of hemo: in-center 3 times a week, in-center 3 times a week nocturnal, every other day dialysis (I know people pushing for this as it keeps patients healthier), home hemo 3 times a week, home short daily (which is done 5 to 6 days a week), home nocturnal (done 5 to 6 nights a week while you sleep). There are a lot of trade-offs with home dialysis. I think they're worth it.
I'll be around to answer any questions for quite a while this afternoon, until I have to go pick up Charles at the dock. I hope you're having a great afternoon, and thanks for reading this far.