For those playing the home game

I don’t think I really explained the difference between PD and HD other than with definitions. Sorry about that.

PD, Peritoneal Dialysis per the National Kidney Foundation:

the inside lining of your own belly acts as a natural filter. Wastes are taken out by means of a cleansing fluid called dialysate, which is washed in and out of your belly in cycles.

HD, Hemodialysis per the National Kidney Foundation:

 blood is pumped out of your body to an artificial kidney machine, and returned to your body by tubes that connect you to the machine

I prefer more detail. I mean, seriously did I ever consider I’d get to use the word osmosis outside of biology class?

How it works is that you fill your abdomen with the dialysate fluid, which is a dextrose solution behind your peritoneal wall. The fluid basically attracts and traps toxins and relieves your kidneys of the work. Your peritoneum works as a filter so that when everything passes back out into the body, it’s clean (osmosis!). The amount of dextrose corresponds with the amount of fluid that will be taken off. The higher the dextrose (1.5%, 2.5%, and 4.25%), the more fluid you’ll drain.

Pro tip: The higher the dextrose, the more uncomfortable and full you’ll feel unit you get used to it.

Just out of ICU, my nephrologist sent me to the PD department to watch a 20 (or so) minute video that briefly explains the process, technique and lifestyle effects. Yeah, right.

I found it rather amusing that the first video talks about how an exchange takes 20 minutes and is easy to fit into your lifestyle.

That script was clearly written by someone who hadn’t had to do a manual exchange (CAPD).

With PD, a tube is surgically inserted into your abdomen. In my story, the tube and the insertion site remained bandaged and covered with a transparent dressing for 4 weeks, entirely. During that really obnoxious time when I couldn’t shower, I had some creepy looking seepage that the nurses kept track of by drawing a circle on the bandage and checking the color. Once the bandage comes off and I was assured I wasn’t terribly infected, the staff flushes the PD tube with warmed solution (dialysate). The flushing is done a few times on separate occasions, then training starts.

Training takes place over 2-3 weeks during which you spend several hours a day in the PD unit with the nurses learning how to hook yourself up to the warmed bag of dialysate. During this time I remained on HD until I began the PD in earnest.

You don’t just grab everything and hook up.

Preparation begins a couple of hours before I start the drain. I have to heat up the solution in the bag. I was given a heating pad to wrap around the bag – that takes forever but you can really hurt yourself if you put cold solution into your body. Cold solution can cause cramps anywhere from your abdomen to your shoulder. They hurt a lot.

Once the bag is warmed, I have to wash my hands with antibacterial soap under running water for 60 seconds. Then I dry them with a fresh paper towel for 45 seconds. I use the paper towel to turn off the water and turn any door handles or lights between the sink and my room. This gets done 3 times before I actually hook up because I have to check the bag of dialysate for leaks or discoloration and the tubing for cracks as I lay it out on a non-porous surface that has been cleaned with anti-bacterial wipes when I remove the outer bag. Then I hang the full bag on the IV pole and place the drain bag on the floor, clamp the tubing, and break the frangibles.

Now that everything is ready and I have my transfer set free from my clothing, I put on a mask (anyone in the room with me has to have a mask on) and go wash my hands for the third time. I then remove the cap from my transfer set and the cap from the connector to the bag and attach the two ends and unclip the tube to the drain bag.

And drain.

Once I’ve drained, I close my transfer set and unclamp the line to the fill bag for a sec to flush the line. I clamp the drain line and open my transfer set to fill.

Filling is weird. If the fluid is warm enough, you barely notice the change in temperature. It makes you feel like you ate and drank too much. You know when you feel like you might need to lie down because you ate too fast so you’re over full? Like that. Your clothes feel tight and, honestly, my shape changes a little when I’m full. Once the bag is empty, it’s time to disconnect.

To disconnect, I don the mask again and use hand sanitizer (since I don’t have a sink in my bedroom) to clean my hands, disconnect and put on a new mini cap with providone iodine solution. The fluid will dwell in my abdomen for the next several hours.

See? Simple and easy.

Most of the materials are provided for you by the PD supply company: IV pole, dialysate, tubing, blood pressure machine, scale, masks, clips, tape, & gauze to name a few. I actually have no idea what they cost. No one discussed that with me. My Medicare dates back to the day I started dialysis as did my Medicaid (once I finally got that ironed out).

When I first started PD at home on my own, it often took me half an hour just to drain, during which I was never sitting pleasantly reading like the video. I was shifting, rocking side to side, doing forward folds, and dancing – dancing was the most fun. I had a real problem draining for the first few weeks. It got to a point that I was also adding heparin to the dialysate because I was also have a fibrin problem. Fibrin, an insoluble protein that is produced in response to bleeding and is the major component of the blood clot, can clog your transfer set and slow draining and fill It’s a creepy fibrous glob that looks like whitish string. It sometimes forms in the solution and can clog the tube and make draining difficult.

Fortunately we got that under control and was tested for the auto cycler (APD). Switching to APD would allow me to cycle at night and free my days up for actually doing things for more than and hour and a half at a time.

I now cycle 8 hours every night (during which I drain, fill, and dwell four times) on the machine and I’m dry during the day. Thank god!

 

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Who knew? Clinic days are good days.

It’s funny. I’m actually having a hard time writing about my good days. I didn’t intend for this whole blog to a giant whine. I really do have some easy days.

I honestly like my monthly PD Clinic.

Part of the process on PD (as with HD) is to get blood taken for labs once a month. Sure it’s a little bit more of a hassle when you’re on PD. I have to make a special trip to have the blood drawn as opposed to HD when the blood just gets taken while you’re hooked up to the machines with no extra needles.

The thing is, I adore my medical team. I always spend more time than I really have chatting with my PD Nurses. We joke and talk about vacations and movies. They’re really wonderful to talk to. I see them when I pick up my orders for the blood work then I drop off the samples that get sent to one of my transplant centers. To the other transplant center, I spring for the postage myself and overnight the sample.

Usually the following week is when I see my entire team: Nephrologist, PD Nurses, Social Worker and Nutritionist.

At the beginning of the appointment we get my weight and blood pressure. I give my Nurses my flow sheets (the tracking forms on which I record daily weight, blood pressure, dialysis solution and vital drainage stats) and we go over my medications every month.

Each member of the team visits me in the exam room, we chat, they answer any questions, discuss medications and nutrition and my overall well-being. This last time I brought cookies because my nutritionist keeps hassling me about the recipes I’m always going on about.

Oh, and I rock my labs like crazy.  I love bragging about my numbers.  Basically,  with the exceptions of PTH, Creatinine, and the specific anemia markers, my numbers are just about perfect. I’ve even been able to forgo iron infusions for the last four months.

I seem to be the anti-patient.

This is part of what makes PD work for me. While I do keep an eye on my phosphorus and sodium intake, I’m able to eat almost whatever I want – as long as I keep the protein and leafy greens intake high.

Lets face it. My good days are boring, but I kind of love them. I lucked out with my medical support team. I like that my doctor gives me crap and tries to keep me grounded about how well I’m doing right now. He reminds me that what’s most important is that I while I may feel pretty good right now, I am in Stage V. There’s no getting better, no rebounding, just treatment which includes transplant. He also reminds me to drink as much fluid as I can right now because there will come a time when I’ll be on fluid restriction.

My nutritionist asks me for recipes while she give me tips. I even share the correspondence from my transplant centers with my Social Worker to keep her in the loop.

Pro tip: Being your own advocate may be exhausting but it’s vital to your treatment. Your health team is there for you, use them and ask plenty of questions. Keep them in the loop even when, especially when that loop has you going in circles. Not only will you surprise your team by keeping them informed, but you’ll get positive feedback for it too.

It’s 4:30 am. Do you know where your REM is?

If you’re lucky, you’re not up wondering. Around the same time every night (ok, morning) sometime around my 3rd drain and my 4th fill, I wake up to pee. This happens even if I don’t drink a lot close to hook-up time. I know, science tells us this isn’t good. That we need our sleep. That with my body fighting all the time, I need sleep. I figure I’ll sleep in 4-6 years, what I’m told is the wait for a new kidney.

Honestly, I don’t get that bothered by it – at least I don’t think I do. Even as a kid I remember waking up several times a night. A childhood friend’s mother told me last year that I prepared her for her kid’s teen years early on. When I was around 4 or 5 and they kept me overnight, she woke up to strange noises in the middle of the night. She said she found me in the living room with a snack and the late, late show. I told her I did it all the time at home.

But I digress.

Not enough sleep is supposed to be bad for you. When your sick, it slows the healing and adds to your stress. Lack of sleep on top of being tired all the time makes me a rather volatile girl, I can own that. So, around November of last year I asked my social worker for a list of therapists because I felt like my life was falling apart. I was falling apart.

I couldn’t get through a monthly checkup without bursting into tears. I was having a really hard time holding it together with all of the new  crap: daily blood pressure checks, having to get clearance from my cardiologist for oral surgery, getting on the transplant list, the appointments, the dialysis supply deliveries, handling my advocacy on my own, the aseptic technique that had taken over my bedtime preparations, not being able to just fall into bed at night, my roommate’s seeming antipathy and the feeling that she was competing for “who’s got it worse”,  moving, the implosion of a friendship. Yeah, I needed someone to talk to.

I started seeing a social worker for therapy. Even though I have a hard time sticking with therapy, it’s amazing how much better I felt being able to bitch to someone, guilt-free, for an hour a week. I really do advocate psychotherapy. I like to refer to it as having a best friend you pay so you don’t have to deal with the guilt of over-burdening her/him.

The only snag I hit was that I found after about 6 months that I really didn’t like her. She had crappy billing practices that forced you into paying her for a missed appointment for any reason. During this time I started losing my voice and this “professional” decided that despite doctor’s advice for voice rest, I should keep my appointment with her and talk for an hour. Also, during this time I was working for a psychiatric group and having issues with one of the psychiatrists. When I would complain about him, I wouldn’t give his name because I didn’t want to even be perceived as slandering him. One day during a session, she leans forward and says conspiratorially: “I just gotta know who he is”. That was the moment I decided to fire her. It felt like she wanted gossip and I wasn’t about to give it to her. Plus, saying that was WILDLY unprofessional.

I don’t want you to worry. I really had also stopped feeling any real catharsis after our sessions. It had helped. I just wasn’t getting anything out of it anymore.

I’m also still better.

As part of my dialysis treatment plan, I’m given a quality of life questionnaire by my dialysis social worker. When I took it last year, my score was basically a zero for how my life was impacted – which is bad in a social worker keeps looking at you worriedly kind of a way. A zero means I can barely get out of bed in the morning because all of this is so difficult. This year (I took it at my last monthly visit), my score is significantly higher – proof that coping has finally kicked in. Phyllis, my SW, was thrilled.

If I get overly stressed again and the crying beast rears its ugly head, I’ll be sure to seek therapy again. Of course there is also a monthly transplant group at my transplant center. I just have to warm up to them which is…weird. I am by far the youngest person in the group by about 15-20 years. That is, except for the one lady who isn’t on dialysis yet but has joined the group in preparation for eventually needing a transplant. Yeah.

Pro tip: Find someone to talk to. This person can be a friend, family, priest, therapist, etc. I suggest someone who is ethically and professionally (and perhaps legally) obligated to keep your secrets. Honestly when it’s their job to listen,  it really is easier to unburden yourself.

Baby steps

Pro tip: Fiber & protein are easier than you think to increase intake. Smoothies, pies, &  casseroles are all dishes you can easily add protein or fiber to without any fuss.

I can admit it. My numbers are pretty awesome. I keep referring to myself as the anti-kidney patient. I like to think it has to do with the control over my diet I’m exerting. When I say diet, I don’t mean that I’m being excessively restrictive. I mean I’ve made adjustments to my food intake to manipulate my blood work.

My first outpatient day in the dialysis center as when I first met my nutritionist. Armed with the results from my blood workup, she told me my numbers were surprisingly good. My phosphorus was so low, I was encouraged to add a glass of milk a day to my diet. My albumin wasn’t too bad and I was told to keep up the vitamin D intake. So, even on HD I was phenomenally lucky with my diet.

My healthcare team has been such a help. The best thing about having to be on dialysis is that I get to meet with a nutritionist once a month. If I’m finding it hard to work in more protein or less phosphorus, my nutritionist can help me figure out what to adjust to change my numbers. PD allows you to have a significantly less restricted diet than HD. Don’t forget, I’m kind of slacker too. My albumin is slipping. I blame myself, I’m fickle – I get cravings for different foods and go on long jags of eating certain foods. I can’t seem to balance out adding leafy greens and protein. I’ll make vegetarian lasagna and forget to have protein with it. This is why I tried adding whey protein powder to the sauce. I can’t have soy, so whey it is and you don’t notice it mixed into the sauce. I don’t consider it a full replacement, it’s just so that I’m actually getting in some additional protein with the lasagna.

Have I mentioned how much I love to cook? It’s a lot easier to monitor your intake of certain vitamins & minerals when you do the cooking. To simplify things, I make a large batch of something and freeze most of it in single serving portions so all I have to do is thaw and reheat if I’m too tired or busy to actually cook. It also works great for lunches at work. Right now I have a freezer full of roasted chicken, lasagna and collard greens. I also freeze raw meat in single serving size portions so I can use it to make whatever.

Sometimes it’s the illusion of control that helps you get through.

Why so long, man?

I’m a slacker. I can admit it. That might also be a lie. I’ve had a lot going on. I was working and dealing with roommate issues. Then I was moving to avoid roommate issues that turned into losing a friend. In addition, I’ve also lost a job and been fighting with unemployment because my former employer didn’t have an account with unemployment. It’s taken 16 weeks of nearly daily interactions with unemployment agencies in 2 different states. Oh, did I mention I’m still looking for work? Let’s call it a hiatus.

Anyway…

After that first trip I’ve returned to my parents house to visit maybe three times. It is much simpler to fly than to drive. Driving home would stress me out because I was rushing to get to my destination so I could hook up for the night. Flying, I’m all for it. I get a wheel chair because that machine is far too heavy to lug through an airport. Airport employees have been nothing but kind and courteous.
It is still a hassle. And I feel like kind of an asshole. Even though I know I cannot carry my machine through an airport, I guess I feel guilty because I can carry it to the car. Now, when I say that, what I mean is I have to sit there panting and exhausted for 15 minutes before I gather the energy to walk back to my apartment to get the rest of my things. The best term to use here is that my guilt is actually vanity. A voice in my head keeps telling me I can push through, at the cost of possibly really hurting myself. This is stupid. No matter how strong I want to be or think I am. I have limits that are stricter than before. I have to practice more patience with myself and remember that getting my strength back is still taking more time.

Pro tip: Let people help you. Let them carry the machine or assist in putting it in/removing it from the overhead bin. You don’t have to let it make you feel weak or sickly.

My first trip

Pro tip: Call the local PD center (that uses the same products, eg. Baxter) and borrow an IV pole from them if you need it. That can cut down on your travel hassel.

I decided I would drive to see my parents for the weekend. It’s about a 400 mile trip. I’ve driven farther, no biggie. Trying to fly with the COPD machine seemed like too much of a hassle. The logistics of air travel involve carrying the eighty gazillion pound machine through at least two airports, packing extra (heavy in bulk) tubing, mini clips, mini caps, flexi caps, drain bags, cassettes, gauze, tape, gentimiacin. Not to mention however long’s worth of medication. Did I forget anything? Yeah, I probably did.

So I figured all that crap would be easier to lug 400 miles in a car. I was sort of right. I think I’m going to try flying next time.

It’s weird trying to keep your routine around people who weren’t there when you started it.

My parents were very attentive. I’m not sure if I really liked it or not. I live with a roommate who treats me like I’m not sick. Sometimes I forget I am largely because I don’t want to be. And then I go home and my parents quiz me on my eating habits. They freak when I get dizzy.

I went to happy hour with some wonderful nuts and it wasn’t difficult to have only one alcoholic drink the whole time. Actually it was easy.

The party the next night was harder but part of my strategy was to stay only a few hours. Since I was driving, I had a better excuse. Except.

I really wanted to get loaded and crash at the host’s house or share a hotel room with one of the other guests, but my COPD machine was at my parents house, waiting for me. Plus the cardiologist said 4 drinks per week.

I think what is hardest is how I have to live my life around getting on and off the machine. But I think I’m managing.

Overall the trip was good. the hassle is lugging everything around. Even though I find the concept daunting with security and everything, I think I will try to fly next time. That way my energy can remain reserved for the vacation part and I don’t have to focus on getting there.

Seroiusly?!

Last night was the worst night ever. I know, that seems like hyperbole, it’s not. (In a side note I’ve always wanted to be able to use the word “hyperbole”!)

10:30 Hookup. No worries, it the weekend and I’ve got no morning plans. I do my hook up routine and settle  in for a movie before I go to  sleep. I like to stay up for the first exchange just to make sure nothing goes wrong.

11:00 Alarm. Low drain volume. I check. It’s too low to bypass…about 500ML short of my low volume allowance. I expected this. I didn’t do an exchange during the day. I press go and let it try for more.

11:20 Alarm. Low drain volume, again. I switch positions and press go.

11:40 Alarm. Low drain volume, still. I check the volume. Sonofa, it has increased by maybe 60ML. I stand and start dancing around. I know, seems weird. I find I like the dancing more than twisting and shifting without purpose.

12:10 Alarm. Ok, this is  ridiculous. I lie back down in a new position and cross my fingers.

12:30 Alarm. Check patient line. This is new. Alright, I straighten the tubbing and lay back down. At least it’s not low drain volume.

12:35 Alarm. Check patient line. Yeah, it’s not blocked. Shut up machine.

12:40 Alarm. You’ve got to be kidding me! This goes on until about 1:00am. I suck it up and call Baxter’s 24-hr help line. With customer service’s help I find that while dancing or getting into bed thereafter, I knocked the clamp on the patient line closed. During my embarrassment I also notice 4 good-sized clumps  of fibrin in my patient line. Now I also know why my drain volume is low. The customer service guy tells me to call me PD nurse since my issue is medical. The bonus is that my volume actually went down, it now reads 1250ML instead of 1260ML.

I hate calling the nurse on call. I feel silly and it’s late and I’m more than likely waking her, so I decide rather quickly to go ahead and call her.

We discuss the fibrin and low initial drain volume. I make sure it’s ok to go ahead and bypass with so little out. I ask some more questions about what to do if I keep alarming through the night. She tells me that if I keep having problems, depending on how far I got in to my program that I can also do a manual exchange first thing in the morning.  I will also be stopping by the hospital Monday to pick up some heparin and syringes. Joy.

The machine alarms a few more times. I got the ok to bypass, so I think I’ll be alright through the night.

Alarms. I don’t know what time it is. I don’t care. I wake up this morning, feeling more tired and crappier than usual, to overnight numbers that are abysmal. Not only was my total ultra fill 47ML, but my last fill is only 1386ML. The bag is empty. I turn off the alarm and decide I can have Baxter coach me getting off the machine properly after I’ve had more/real sleep. It keeps going off every 20 minutes or so.

I suck it up and call Baxter again. The customer service guy guides me through ending my program, judgement free. I am free! And I feel horrible!

I need to eat before I start the manual exchange I need desperately to feel better. Then I can nap…all day.