Oh, Friday....

So, Friday started out pretty good. They'd gotten the machine through the prime process, and I was able to use my handy flip chart to figure out where we were in the process, and what I needed to do to complete it. In short order, we were ready to attempt using blunts on both buttonholes.

Success on my first one. No success on my second. John was a trooper while I poked and prodded, but alas, no. The track is there, but the vein did not want to let me in, so the trapdoor just isn't formed enough yet, OR, I don't know the exact correct angle to hit it. It's a deep one, so perhaps shortly, with time, my angle will be correct.

We ran uneventfully until we were down to about a half hour left. He felt off, and his blood pressure told the story. It was 71/40, which just isn't healthy. I gave him a quick saline bolus (small infusion of saline) and took his pressure again, but no, still down. At that point, I got his nurse and she decided to teach me to do an emergency rinseback. All total, we gave him about 1000 mL of saline before his BP climbed back to where we  felt comfortable pulling his needles. I did his take off, and we kept him lying down while we cleaned up the machine and got our final numbers.

We decided that this weekend, I'll poke a few blunt needles in his fistula, just to keep the paths open. Monday and Tuesday we'll go to Wellbound to dialyze, and then the hopeful plan is that Wed, our nurse will come to our house and we'll do our first home run. :) So, if it all looks good, Tuesday, when we get home from dialysis, I'll make a batch in the PureFlow!

Day: "Too Many"

So we are on day... well, day 'A lot'.

Currently, it's mostly boring, because we aren't doing much 'training' and are mostly just dialyzing in the center while we wait and wait and wait for the top buttonhole to finish. Speaking of buttonholes: My mom mentioned that I didn't really explain what they were. She googled, but (here ya go Mom)

A button hole for a fistula is a LOT like piercings in your ears. It's the same nurse sticking the exact same path every single time. Eventually, a 'track' forms. Then, inside your arm, the vein actually gets a 'trapdoor'. It's a flap, that pushes open when you push a blunt needle in, and slips shut when you pull the needle at the end of treatment. Blunt needles make a HUGE difference in your mobility during a treatment. Why, you ask? Because unless you exert a LOT of pressure, the blunt needle will NOT pierce the vein. (Which causes the dreaded infiltration.)

His lower buttonhole is happy and working. And we KNOW this because not only have the nurses been able to use blunts there, but today, for the first time, -I- stuck his lower buttonhole. I was nervous about this, because I'm nervous about anything I don't feel I have hands on knowledge with. But it was fairly simple, and I frankly felt pretty darn awesome when I got the 'flash'. (Flash: the pulse of blood that throbs in the tubing from the needle when you hit the vein.)

So yay! She tried to put a blunt in the top buttonhole, and was able to do so EXCEPT for piercing the vein. So we had to go back to a sharp. BUT, I got to see first hand that the blunts really just don't pierce the vein. So ya for more knowledge.

I also managed to forget to take my flip book with me, so setting up the machine was an adventure. As were the two nurses and I trying to chase out LOTS of air bubbles from priming improperly. :) We didn't need to toss the cartridge and start over, but it was time consuming.

Days 10 & 11

Were both very good. :) Little technical difficulties, but those are actually GOOD at this point, because I get to learn how to deal with them in reality, rather than in theory.

We went in a little early today (Day 11) because the nurse who has been working on the buttonhole for his venous had an appointment, and we all wanted her to stick it. Which she did, perfectly. Although the damn needle goes STRAIGHT down. We were able to use a blunt in his arterial today! YAY! Now the venous, and we could come hoooooome.

We went over alarms and the like, but for the most part honestly, we just were there doing his dialysis instead of at home. Still love having back up, but I'm less afraid of the machine, and better at not getting too jumpy when it dings at me. We had odd '8' alarms today and yesterday both, that left us all scratching our heads. (For those who aren't familiar with NxStage, an '8' is yellow, and essentially means 'Hey, I've checked this out, and everything is going juuuuuuust fine.' It also doesn't typically make NOISE.) Our '8' is, from time to time, beeping at me.

I even got a '5' alarm, remembered what it was, and remembered what to DO about it. Magically, I knew to mute it, and to raise his dialysate because we were no longer pulling fluid.

We've taken off exactly 10 Kilos since we switched from PD to Hemo. I'm gonna call that another sign that this will be a better modality for us.

Hubby was once again a trooper. He even dozed quite a bit on and off during treatment, although he and I both worried he'd flinch his arm in his sleep, and we do still have that dratted venous sharp in. I played with the blunt a little today, because they still LOOK sharp, but it wouldn't pierce my glove with a healthy dose of pressure, so that's reassuring.

And now, for the weekend off. :)

Day 8 & 9

He's a trooper. :) It's just not comfortable to lie there with your arm perfectly still for three hours, but he managed, and we got another solid three hour run. :)

I set it up entirely by myself and asked them to check it before we stuck him. (Cheated and used my handy flip chart I made) They got the needles in smooth an easy. The run was uneventful, although we ran at a very low BFR because his Venous pressure was wonky. (BFR = Blood Flow Rate, or the speed at which the blood exits and enters the body) No issues today.

Day 9 - Today (I think I've decided to name our machine 'Vlad'.)

Today was another full run. I'm still not sticking his needles, although I'd really like to. Super Needle Nurse did them today, and in the early part of the run, we got some Arterial Pressure issues. His veins have done a dive farther down since his infiltration (bastards!) so the needle just didn't lodge right. She re-stuck him further down, and all went beautifully. I sat and went over the books some more, and kept his logs (I chart his vitals and such every half hour). Currently, the nurse isn't having to 'train' us anymore. It's more about repetition and hands on work. It's starting to feel more comfortable for me, and I think for him as well. Personally, I'm getting a better grasp on what the numbers mean, the lights, and the like. Which is important. I'll repeat, I need to know WHY things happen in order to feel competent to keep things running right, and to handle problems when they arise.

His buttonholes are slow going, because we've had so many fits and starts with his arm, so we'll be there through next week, even though we could likely be ready to be home before then. I'm surprisingly comfortable and not hurried about this. It's REALLY nice to be doing it at Wellbound, mostly by myself, but with support if I so much as raise my voice. :) In fact, while taking him off, the nurse and I forgot to hit the 'Mute' button on a meaningless alarm, and two of the other nurses poked their heads in to make sure all was well. That's pretty awesome.

I asked for, and was given, a fake 'arm' to fuss around poking needles into today. I know we are trying to make buttonholes, but I'm thinking the ability to stick him with sharps is gonna be a handy one if his access acts screwy at home. So today, I practiced sticking needles into a fake arm filled with red colored water. :) I only infiltrated a bajillion times. I asked to practice on my own arm, but got veto-ed. I'll just keep asking. :) I'd love for my fingers to know the feel of 'You've hit your target, STOP'. Seems a valuable bit of info.

They asked us today if a patient who is considering Home Hemo could come in while we were running, see our set up, and talk to us. It was almost amusing, because I feel SO damn new, and lost sometimes. But really, I think what they wanted was for them to see the machine in action, and for both of them to be able to ask questions of people in their shoes. Caregiver and patient alike. They sat with us for about fifteen minutes,  and we talked about the differences between this and PD (their current modality) and just generally tried to bolster their courage. Apparently, we did okay. :) They asked us if we'd be interested in being part of their mentoring program. Which I would actually LOVE. I am a huge fan of home dialysis, and I'll happily share that with anyone who asks.

So, the nuts and bolts today. I managed to safely get his BFR (Blood Flow Rate, remember?) to 380. When we run during the day when we come home for awhile, we'll want that more like 450. (We will run during the day at home for a few weeksish until I feel pretty comfortable. Waking to an alarm at 2am and feeling like you haven't a clue what's happening would not be fun.) When we switch to nocturnal, we'll drop the BFR WAYYYYYYY down, and run long, slow dialysis. The benefit of this is several fold:

• It's easier on his fistula. Think about a hose, and how much longer the hose lasts if you don't run fire engine strength through it. 
• It's easier on his heart, and we know hearts last longer when you are kind to them.
• It often will pull Phosphorous from the system, which shorter, quicker dialysis, NOR Peritoneal Dialysis can do. 
• Generally, the patients fluid restrictions can be lifted some, which makes for a happier patient.
• Plus, doing it at night while you sleep, you lose NO moments in your life. You are free to do as you please. 

If you are a dialysis patient who would like to do dialysis at home, under the care of a fantastic organization, speak to your Neph about associating with a 'Wellbound'. They aren't very widespread yet. I'm told that the way an area gets Wellbound to come in is to have enough interest from the Nephrologists in the area. Talk to yours. You could simply NOT ask for better, more EMPOWERING care. We are never, ever herded anywhere like cattle, we are always shown respect, and more importantly, they hold your hand until you are ready for them to take the training wheels off. Even then, they are right there, 24 hours a day, just in case ya skin your knee. It's lovely that instead of visiting them once a month and our Neph once a month, etc, we go there once a month to what we call 'Clinic Day' and our Neph meets us there. So, our entire kidney team discusses what's going on. The dietician, the social worker, the nurse who has our case, the Neph, and US. We are never rushed (in fact, it's usually US who is in a bigger hurry) and our Neph spends all the time WE need, which is a beautiful thing. :) 

Okay. That's the end of my advertisement. 

Day 7

Interesting, isn't it? Day 7 is the first day of our THIRD week. :)

It's also the first time, FIRST time, we got three fulls hours.

Our intention was to use Safety Cath's to create the buttonholes, since we were having infiltration problems. That was a weird failure. Four sticks with them going in smooth and easy, but no blood return. Each one we pulled was clotted, and clotted FAST. To the point where they think that he was having a weird reaction to the plastic in the cath. So, after four unsuccessful cath sticks, we went back to needles. In smooth as can be, and we ran happily, ramping up to a BFR of 350, where we stayed. Three completely un alarmed hours. :)

So, tomorrow, back for more. Hopefully, soon, the buttonholes will be formed so that me sticking him at home will be much easier. Not a lot to report here, an uneventful day. :)

Day 6

...Was very, very brief.

We loaded our camping cot into the car, along with a fluffy blankie to put on it for comfort, some pillows, a mass of training books, and ourselves. :) Arrived on time, got the cot all set up, got the machine all set up, and his first needle in like butter. The second, well. Not so good. The infiltration last week is still playing havoc, and it's making issues with his sticks. So, after about an hour of fiddling with VERY low blood flows trying to ramp up to a reasonable speed (I mean, really, we made it alllll the way to 200) we decided that this was not worth the risks. He still has a PD catheter so we will mix in some PD, take time to let the swelling really go down, and go back at it. Likely, we won't go back till Monday.

The good news is, we have a plan.

We are going to use new needles. (I'm not probably going to explain these right because I'm not 100% clear on what they are called.) These needles have a soft tubing within them, so you use a steel needle to insert them, then pull the steel out so the tubing stays behind. You can't use these regularly for some reason, but we will be leaving these in place for a week to 10 days. The bonus is, we won't be infiltrating with them, and they will create buttonholes by being in there so long.

So, a little more time at home to work on getting the machine set up and such, and then, we'll be back at it. :)

Days 4 & 5

And we're back in the saddle after four days off from training. We still have a big fat juicy hematoma, but his fistula is doing it's job. His cannulation (Getting the needles inserted) hasn't gone quite as smoothly because of the swelling and such, but all in all, that part has been okay.

What's not okay is that he simply cannot sit in the chair long enough, still enough. We have YET to complete a full 3 hour run. This isn't the worst thing in the world, because we've been mixing in some PD as well, but we need to get his sessions during training longer, so I get the learnin' time I'm supposed to have to become successful as a Hemo Nurse. :) So, today, we tried doing it in his wheelchair. Fail. Tomorrow, we are taking a heavy duty camping cot to try having him lie down while he dialyzes. Keeping still is so important when you are using sharp needles, but if you have to fidget, well. Can you say infiltration? So, to try to keep from doing it again, we are changing things up.

Yesterday, our machine came in to the clinic. They loaded it all up in the back of our truck, and when I got it home, my Dad and I brought it in, and worked on setting it up. Below is a photo. This isn't the complete set up just yet.

I drive a huge Nissan Pathfinder, and the boxes -barely- fit. Barely. And it wasn't ALL the boxes. (I learned this today when Ruth brought me a whole other stack of boxes.) 

What you see above is actually more than one machine. In days past, home hemo dialysis patients had to hang big bags of saline fluid to use, because you need high quality water. Now, the big base you see above makes it for us. It's called the PureFlow Pro SL, and you mix your saline in that in bags they provide. Saves lots and lots of lifting, for which I am extremely grateful. On top is the 'cycler' or NxStage System One. (Called a cycler because it cycles your blood through.)

I couldn't figure out all the connections (without all the pieces and parts, that makes sense, yes?) so today, I promised myself I'd take a photo of the machine we use at Wellbound. Or rather, the back. 

So tonight, when I go to finish setting up ours, I'll have a roadmap! Yay me! 

Anyhow, back to training. I set the machine up myself, with guidance from Ruth. It's important to me at this stage that I do as MUCH as humanly possible, with them looking over my shoulder and thumping me on the head from time to time when I ask silly questions repeatedly. (They don't, but they probably should. I'd likely remember better.)

I decided while we waited for the machine to prime (this part takes 15 minutes of non working time) I would set up the stuff Carol would need to stick hubby. I wasn't really sure I remembered it all, but this is what I gathered whilst the ladies were helping a patient in the next room. 

It sort of sounds silly, but I was pretty thrilled that I was able to do it. For me, it's important when I am learning something that I don't just learn it by rote. I need to understand WHY I am doing what I am doing, and WHAT I need things FOR. Today, I was able to think through the entire process of cannulation, and gather the right items. Score! 

When it was time to start hooking tubes up, I asked Ruth to simply watch me, and talk to me about them. I didn't want to know 'Hook the blue to the blue'. I wanted to know 'Hook the blue to the blue, because that's the venous line and it'll take the blood in to clean it.' And bless her, that's exactly what she did. I asked endless questions, and I may even remember an answer or two. 

His pressures stayed great during todays session, until his heart rate jumped to 151. BP was a little low, so we gave a saline bolus and the world was again right. (Saline Bolus: Small infusion of saline given into the bloodstream to help raise his blood pressure. See, Mercedes, I do listen to you!) 

We rolled along with the book learnin' until John was just too uncomfortable in the chair to be still, and unhooked him. I did it mostly myself today, until my fingers get used to holding and pulling and such all at the same time. I have no issues at all pulling one needle, but pulling them both is a bit more difficult. When we pull his needles, we have to hold a gauze pad on the hole for ten full minutes to allow both the outside and inside to form clots. (Because really, no one wants to have a Carrie moment if they don't have to.) The needles also have a guard on them, that you slide on as you slide the needle out to keep from sticking yourself, and it just adds a bit of dexterity to the whole thing. 

I asked far more specific questions about the numbers lights and bells and whistles today, because again, I don't just want to know what to do for a certain alarm, I want to understand WHY I am doing it. 

John and I are working hard at being good to one another. We find ourselves growing frustrated with each other through this process, and I think it's less about either of us doing anything wrong, and more with each of us struggling to get through this. For him, he feels like a burden, and helpless to not be a burden. He feels like he lets me down when he can't sit still long enough. For me, I don't learn from books as well as I learn from DOING things, so when it's time for book learnin', any distractions cause me to completely lose my train of thought. So I don't seem terribly patient when he needs something, because I really want to make sure that I get this right, and I feel sometimes like it's too much to take in. I felt the same way when we learned PD, and the PD cycler, so I -know- I can do this, and I KNOW they won't send me home if I'm incompetent, it's just a matter of patience and time. So we talk about these things driving home, and so far, we're doin' okay. :) (Although I tease him a LOT about 'hey, one little air bubble buddy. Just ONE!') Probably morbid humor, but it's who we are. 

Tonight, we'll be doing some of NxStage's online training, and taking some tests. Big fun! Grab some popcorn. 

Day to Day life with Dialysis

What does dialysis do to your life?

I can answer what it does to OUR lives, but it won't be the same for everyone.

In Center - We did this for a few months while we were waiting for his catheter to be ready for home PD (Peritoneal). It happens three times a week, and your times are very much set in stone. So, for us, three times a week, we drove 50 miles to the center, and John spent 4ish hours connected. Sometimes, it took awhile for them to get him hooked up, or taken off, so it often took longer. Because we lived so far from the center, I stayed in town, and did things like walking the track, shopping, reading, etc while I killed the time.

After in center dialysis, John was always very worn out and tired, so the rest of the day was pretty much shot for him.

In Center, there are usually 11ish other people dialyzing in the same room, it can be noisy and hectic. I also think it's awful for morale, because you tend to see the sickest patients coming in here. On gurneys, stretchers, wheelchairs. I have to think it makes the 'healthier' patients feel as if they are glimpsing their future. Some people talk about poor treatment in their facility, but John never really had an issue with that.

Traveling is difficult because you either have to structure your trips around dialysis days, or set up with a center in whatever area you are traveling to. We chose NOT to do that while on In Center.

Peritoneal - The method we've used for a year, and are just now preparing to switch from. I'll start with the catheter hanging from your belly. You have to figure out the best way to keep that secure, because it dangles freely. Maybe a foot of it. If it were to get pulled on really hard, or stuck in something, you could potentially pull it out of your body, and that would require another surgery to correct.

Then, the supplies. The photo below is not -our- supplies, because I can't find the one I took, but there are a LOT of supplies. Boxes of dialysate (the bulk of the supplies), boxes of caps, cartridges, drain bags, patient extenders, drain line extenders, etc.

You order once a month, and once a month, Baxter delivers your stuff. We had a fantastic delivery guy, he brought everything in, rotated all our stock, made sure all was as it should be, and was also just generally a friendly and nice guy. :)

We chose to use a Cycler, which is a machine you hook up your fluids too, and yourself, and it does your drains and fills overnight, while you sleep. That meant I was carrying two 6L bags, a 3L bag, and a 2.5L bag each night into our bedroom to set up the machine. Then, there are the drain fluids to think about. We had two five gallon buckets sitting in our room, and my drain lines fed into those, because you drain a LOT of fluid each night. So each morning, I'd lug the buckets to the bathroom to dump and clean them. My father helped me install a drain line into my bedroom floor, and it ran down into my basement and emptied directly into a floor drain. THAT was a banner moment for me. :) I was over the moon to not be carrying the damn buckets. 

Traveling with the cycler was always interesting. The beautiful part of home dialysis is you CAN travel. Recently, we went on our first cruise with our Baxter Cycler, and I'll try to give you a glimpse of the supplies that had to travel with us. JUST dialysis stuff, not clothing and the like. 

Those are just the boxes of fluids. :) I also took a small carry on sized piece of luggage full of ancillary stuff, and two more boxes of things like cartridges and such, plus the cycler itself.  It's important to travel with a few extra things, because if you drop and contaminate something, or just have a malfunction of some sort, it's not easy to replace. You can't even just go to your local hospital and get it. So, I prepare by taking extra of everything.

Home Hemo - I'll have to post more here later, since we haven't actually come home with it yet. :)

For most dialysis patients, one of the toughest restrictions when your kidneys have failed is fluids. John is allowed 64 oz of fluid daily, and fluid is ANYTHING that would liquefy at room temperature. Some fruits like watermelon, pineapple, etc can mess with your fluids as well. Most kidney patients who get transplanted struggle to drink as much water as the transplant team directs them too because they've been sipping for years. :)

And that's a brief glimpse of what it's like to do dialysis in center, and at home. 

Some Dialysis Explanation

Recently, my daughter commented that I do not explain the nuts and bolts of dialysis overly well, which can make it hard to follow exactly what I am talking about. So, below, the nuts and bolts.

There are three methods for dialysis:

In Center - Such as Fresenius or Davita. In this modality, you go to the center three times a week and sit in a chair, where they run your blood through a dialyzor. Typically, you are there anywhere from 2.5 - 4.5 hours, depending on your size and other health issues. To do this, they use your 'access'. (Those will be below as well)
 

Home Peritoneal Dialysis - This is likely the simplest method to learn to do at home. A catheter is surgically placed in your abdomen, with a tube hanging out that is what you use to connect to do dialysis. It's done by filling your cavity with dialysate fluid. This fluid sits in the cavity round the clock (getting changed in the middle, either by a manual exchange, or by using a cycler to do it automatically while you sleep). As the blood vessels surround the cavity pass over it, the fluid pulls the toxins into the cavity and holds it there until you do an exchange, where you drain the existing fluid, and add new. This method is tougher for those who have weight issues, or diabetes, as the fluid you use is a glucose base, and can give you as many as 800 calories a day depending on solution strength.

Home Hemo Dialysis - Like the in center modality, you use an access, and a machine to clean your blood. Two needles are inserted into your veins (A fistula, explanation below) and the dirty blood is drawn out, runs through the machine, and flows back into your body via the second needle. There are photos of these machines in previous posts. With Home Hemo, you can do short daily during the day for a shorter number of hours (3-5 usually) or you can do nocturnal, which is done for longer periods of time (7-8 most often) at a slower rate. This method tends to be easier on your fistula and heart, and tends to offer better cleaning, and less side effects. 

The 'Accesses' typically used for Hemo Dialysis are either a 'port' or a fistula. A fistula is surgically created, within your arm (usually) and it's the joining of a smaller vein with a larger. This causes the smaller vein, over time, to get bigger, and stronger. Once it's mature (usually measured in months) you can repeatedly put in dialysis needles and the vein is large enough to carry the flow of blood. 

A port is typically a more temporary measure. They are not considered a really long term solution because they are much, much easier to infect. This is a photo of an 'IJ Cath' (Inter Jugular Catheter)

Up next: How does doing dialysis affect your day to day life?

Day Three - Infiltration.

Yeah. We did.

I set the machine up again this morning with LOTS of supervision from Ruth (Our rockin Nurse) and Super Needle Nurse popped right into his fistula again, ever vigilant of creating lovely buttonholes. I also learned how to draw his labs, and play with the centrifuge we'll be bringing home. Learned to tape the post tube to his machine so I won't forget to draw that one too before I pull his needles.

Hah. I just noticed the hot pad in the photo. It looks like we were baking while we did dialysis but no. It's for the 'Snap N' Tap' where we work all the air out of the lines because you know, air bubbles in lines going directly to your veins is rarely good for ones health. So the dialyzer (the fake kidney part of this whole shebang) get some good bangin on that hot pad. 

So he's dialyzing away....

We went over more book stuff, toyed around with power outages and the like, and went over alarms. (See the serious book learnin' photo below.)

We'd reached the point of just hanging out while he dialyzed when he shifted too much in the chair and BAM, infiltration. So currently, we are working on icing it, and will only be going tomorrow for our regular clinic visit. The chairs there are vinyl (because really, when you are spewing blood sometimes, like we did today, cloth is not a good option.) and he slides in them badly. He was trying to adjust himself, and sadly, adjusted the needle right through the wall of his vein. :(

Not the worst thing in the world, just kinda icky after having Day 2 be better. I'm an over achiever, and really, I just wanted to finish up the buttonholes, move to blunts, and be all like 'We've never had an infiltration! I'm the best pseudo dialysis nurse EVAH!' But alas, that will never be. :)

We also talked about respite. Wellbound offers respite, and that bit of information really helped ease my brain. When we were doing Peritoneal, it wasn't a difficult thing to imagine someone could cover for me if I got sick, or had to leave town for some reason. With Hemo, that really just won't be an option. However, you CAN set it up with Wellbound if scheduling allows and they will come out and run him if need be. I always worried about something happening to my mother, or what have you, and it's helpful to know that if I have to go somewhere, I can.

So. I got to learn sort of how to deal with an infiltration, although frankly, at that point, MY learning takes a backseat to the nurses fixing the problem, so I have vague notions. :) He's got a verra healthy sized lump on his arm, and I'm -hoping- like crazy we can get back into his fistula by Friday.

Now, on to planning the water tap in our bedroom, and how to re-arrange to make the best use of space when we bring home the hulk that is the NxStage machine and it's buddy PureFlow.

My thoughts on Kidney Awareness Month

Today, while we were hanging around cleaning Johns blood, the social worker from our Wellbound clinic popped in and asked me if I would be willing to write something up about our experience with Wellbound, and I happily agreed. First, let me tell you a little about Kidney disease in America. 


Did you know? : http://kidney.niddk.nih.gov/KUDiseases/pubs/kustats/index.aspx


A clip from that article that stunned me: "Prevalence (2010): More than 10 percent of people, or more than 20 million, ages 20 years and older in the United States have CKD.<sup>1" 


Now, not all of these patients will be on dialysis. Some folks with CKD live their whole lives without having to go on dialysis. They can modify their diets, avoiding things that are hard on their kidneys, and function just fine. Others aren't so lucky, because they never KNEW their kidneys were failing until it was too late. So, in the interest of hopefully avoiding anyone else finding out the way WE did, here are the most common symptoms.</sup>

• Urinate less than normal.
• Have swelling from fluid buildup in your tissues. This is called edema (say "ih-DEE-muh").
• Feel very tired or sleepy.
• Not feel hungry, or you may lose weight without trying.
• Often feel sick to your stomach (nauseated) or vomit.
• Have trouble sleeping.
• Have headaches or trouble thinking clearly.
• Lack of sex drive

Now, our story. Some has been documented below, so I will skip all the drama that led us to learn, in a hospital ER, that Johns kidneys were kaput. 

When you learn your kidneys have failed, it's frightening, and alarming, and the information comes at you faster than you can actually take it all in. There are now a million things to think about. Potassium, Phosphorous, Salt all become your enemy. You start to take a LOT of pills. When we left the hospital in Milwaukee after a week to go home to Indiana, I stopped at a pharmacy to fill the scripts they'd given us. The pharmacist actually called me back over to warn me that the scripts, all total, were over $800. Think about that for a moment. 

In the hospital, a resident Nephrologist began dialysis. He also set John up with a Neph at home, and on the Monday after we returned home, we went to see him. 

I had time, prior to seeing him, to begin to educate myself about ESRD and all that it entails. I can't stand to feel as if I don't understand what's happening, and I wanted to be SURE we were active partners in his care with his doctor. It took us a little time to establish that with his doctor, and I contemplated changing doctors, but over time, we've come to work together quite well. (Once a doctor understands you ARE, in fact, working TOGETHER, things tend to go much better.) The new doctors office is connected to a dialysis clinic, and he sent John over for dialysis because he needed it badly, and sent me (I'm thankful for this EVERY day) to visit Wellbound, a home dialysis unit. 

I left him trying to get comfortable on a bed that was way too small for him, in a room full of strangers, and a dozen other people getting dialyzed, and walked into the calm that was Wellbound less than a mile away. Katherine, the unit director met me, and we went to a conference room to talk about what lie ahead for us. Patients have better health histories when they do dialysis at home, and that's what Wellbound specializes in. They do not offer on site dialysis, and I believe that they are also non profit. Our Neph had recommended Peritoneal Dialysis, so, that's what we went with. (In hindsight, not the best choice for us). And so, John went to dialysis in clinic, and had the surgery to prepare for PD. Immediately after the surgery to place the catheter tube, we went to Wellbound for a sort of 'intake' visit. And was I ever shocked. :) We were taken to a room, and in came the nurses. Yes, nurses, plural. They were all there, fluttering over John, explaining things, getting him all set up in the system. In came the social worker. In came the dietician. We met them all, we got advice from them all. I asked a trillion questions of them all. They answered them all. I walked out of there that day feeling oddly calm, and with the attitude of 'I got this.' That's what Wellbound gave me. 

We continued training there. We did PD for quite awhile. We went, and still go to 'clinic' once a month. Clinic is held at Wellbound, and our Neph comes there, so we powwow with our nurses, our Neph, the social worker if need be, and the dietician. They stop me in the halls and ask how things are going. They let me stop them and ask my endless questions. They explain test results to us, they explain the TESTS to us. they empower US to provide his healthcare. There's just NONE of the usual BS. None. They have a calming, matter of fact approach to all of this that leaves you feeling like your world hasn't just come crashing down around your ears. I've never once felt as if I were bothering them (and I -know- I have bothered them, I can't help it! It's in my nature).

I've read and read myself silly on forums dealing with dialysis patients, and it saddens me to hear how many have had much, much different experiences than we did. Poor treatment in centers, neglect in centers, fighting the system to be allowed to DO home dialysis because in center dialysis is SO much more profitable, fighting to have a voice in their own care and comfort. We never had to deal with that. And that, I owe to Wellbound. 

When we made the decision that we wanted to switch from Home PD to Home Hemo Dialysis, AND to do it nocturnally, I recalled a million posts from other patients on how their clinics kept turning them down for it. Telling them it would take months or years before they could offer training to do it, and I mentally braced myself to be prepared to fight for this. I planned out my arguments, I educated myself for days on end, and I went in all prepared to go all warrior on the doc for it. At clinic, I said 'I think we want to switch to home hemo, and do it nocturnally'. Ruth, our nurse said 'Okay. When you wanna train?' The doc asked my reasoning for nocturnal, and we discussed what -I- wanted time wise, and after debating the best course of action, our training was set up on OUR schedule. :) Not months, or years. Just 'When you wanna train?'

And Kabam. A few weeks later, we go five days a week to learn to do this at home. This modality will give John the best possible health and life until we are fortunate enough to get a kidney. And just like that, Wellbound and our Neph made it happen. 

And finally, a note on organ donation. Do it. Please. Sign it. Kidney patients are actually the luckiest of the organ failure patients, because there IS a method to keep them alive until an organ is there for them. Others, not so much. And even still, kidney patients die every year waiting for that gift. So, please, I beg you, donate. You don't need all those pesky organs once you are gone, and you truly CAN leave a legacy that cannot be measured. 

Day 2. Yay!

Day 2 was much better. :)

They hadn't set up the machine yet, so I got to d it this time. It's rather mind boggling to me that I don't have to deal with Alcavis, masks, air flow, etc, but I'm tickled about it.

I feel a little more capable after setting the machine up, although I -know- my OCD triggers are gonna fire off ALL the time with so many tubes. I still don't fully grasp the cycle of WHY I'm connecting what tubes to what, but I think that will come with time. I did it with no issues, and that, for me, was heartening.

We got through lots of the book, and while the info is overwhelming in it's vastness, I remember feeling that way with the PD cycler too, so I'm just gonna be patient and move right along. At the top of the above picture, what you see is the actual dialysis machine. The orangey colored tube on the top left is the 'kidney' and it's filled with a bajillion fibres that his blood will run through, then be deposited back CLEAN! The base appears to be a cabinet, but oh no, it's not. :) It's called a PureFlow, and it's where the dialysate (fluid used in the cleaning) resides. This is a big boon, because our old mode of dialysis (and this one until not so long ago) used to require hanging huge bags of dialysate. HUGE. Like, 6 litres, and four bags! Those buggers are heavy as all get out, lemme tell ya.

I did not cannulate him,cause well, it's Day 2, and Super Needle Nurse is creating buttonholes. :) I did, however, pull his needles myself, with no blood spatter! Yay me! Super Needle Nurse once again slid em in like buttah!

I had a brief moment of 'click' today while we were working with the buttons of the machine. I'm comfortable now in documenting things each half hour, but I wasn't really grasping the numbers on the front panel of the machine until it occurred to me that Red= Blood, Yellow = Pee, and well, if we could dye the dialysate green, I'd just be good to go, now wouldn't I? It -is- almost Saint Patricks Day. I think I shall call NxStage with a customer suggestion.

Sadly, the chairs at Wellbound aren't terribly comfortable for a big ole guy, so at one point, we popped some headphones and music in for Hubby and went on without him. His vision isn't good enough to allow him to do most of these things anyhow.

I'm oddly sad to be losing our Baxter delivery guy. He was SO good, and I know from my nurses and from IHD (ihatedialysis.com) that NxStage isn't dedicated carriers, and it typically isn't so great. But, my nurse took me today to show me what our supplies will be, and I will NOT miss having SO. Very. Much. Stuff. I was all agog at the idea of this little pallet of stuff!

We'll be running a water line into our bedroom, because frankly, it's not that big a deal, and the ease with which it will allow me to fill the PureFlow will be wonderful. My father and I ran a drain line through my bedroom floor and into my basement for the Cycler, so that's already in place. You can't see it there, but it saved me from lugging those darn buckets!

Now, to begin rethinking how things are set up in the Medical Bay (aka our bedroom) because the NxStage machine and PureFlow will take up more space, and make it less simple to set up his BiPap machine.

We won't be coming straight home to nocturnal, as our nurse thinks (and I agree) that it'd be easier to first do short daily, then move to overnight a few weeks later. I'm okay with that, and if we get home and feel ready sooner, by golly, that's what we'll do. :)

Booyah for a successful day 2.

Day 1, sorta a dud.

So Day 1 wasn't nearly as useful as I would have liked.

Johns BP plummeted all nasty like the moment the machine started whirring, and we fought it for awhile before calling it quits for the day. So, he got about 50 minutes of dialysis. We were all comfortable with knocking off that way since we can still easily do some PD tonight. We won't run on the cycler, because that's probably partly why his BP was so wonky today, but really, when we got a reading of 65/30, it seemed time to say, 'Not Today'.

His blood pressure meds are being adjusted, so we shall hope for more success tomorrow.

For now, I can tell you that damn machine intimidated me. Today was not a day of learning about all it's pieces and parts, so our nurses were sorta sharing bits and pieces here and there, and I felt a little lost in the whirl. I know that'll go away, cause they are extremely thorough, I have a big ole book, and I'm a good learner once I get my hands on things. But damn. There are eleventy trillion tubes. For serious.

I'm also thrilled to announce that his fistula rocks. :) We used it last month to do his iron, because that's how we decided to see if the bugger worked, and by golly, it sure does. Didn't seem tooooo painful for him and our BEST NEEDLE NURSE EVER banged em both in first try, like butter. (So there, doctor who said he'd have to have another surgery to lift the veins).  We also have Emla cream for tomorrow, and the buttonholes are a work in progress. I'm tickled to death at the idea of moving to blunt needles, tickled, I tell ya.

Best yet, our nurses at Wellbound 'get me'. They teach me in the way that I learn. I often will have really random questions pop up, and they are always patient and answer em, even though they have absolutely nothing to do with whatever task we happen to be working on. Wellbound rocks, and I highly encourage ANYONE who wants to do home dialysis to go there, fast. Run, don't walk. Our unit is just the bomb. They literally put us back in control of our lives when failed beans sent it spiraling out of our control.

And so, tomorrow begins at the god awful hour of 8:30am.

Today is preparation day! Tomorrow begins a new modality of dialysis for us here at home. But first...

On January 29th, 2011, my 43 year old husband was diagnosed with failed beans after a minor stroke. He's had diabetes for many years, and battles weight as well. After a week in the ICU, we came home to an amazing dialysis unit (Wellbound of Lafayette, Indiana).

Initially, we chose to do Peritoneal Dialysis because that's what was recommended to us. We began that in April of 2011, and while we loved the freedom it gave us being untethered to a dialysis unit three times a week, hubby still battles weight. The dialysate gives him anywhere from 500-800 calories a day, so even cutting his caloric intake back to 1200 a day doesn't help a ton. Add to that the fact that a large wound on his heel has put him in a wheelchair for awhile, and it makes for weight issues.

He is currently active on the transplant list at IU Indianapolis, but needs to shed weight to actually be ready to accept a kidney should we be so blessed.

And so, tomorrow, we will begin a NEW phase of the Journey of the Failed Beans.

Home Hemo dialysis is not new, but doing it at night is far more recent. Doing short bursts of daily hemo is much better than three times a week in center, however, longer dialysis, overnight, allows you to slow the rate of blood moving in and out which is gentler on your heart and your fistula. So for the next three weeks, I'll be learning how to do this mode of dialysis at home, and we'll set it up for overnight.

Lots of learning in our future, but I'm extremely excited about the opportunity to make him even healthier, help him lose weight, and get him closer to a new bean. :)

Jen