Same old same old stuff and one new kind of stuff

Something I forget to tell people about PD is that it's all about routine.

We do the same things every day.  Day after day.  For as long as we have to.  It's pretty much like breathing after a while.  You don't really think about it, you just do it.

Setting up the machine.  Tearing down the machine.  Then setting up the machine again.

Sometimes I get to the end of a setup and I suddenly snap to attention and realize I've set up the machine without really thinking about it.  It's that repetitive.

Don't panic.  You won't die of boredom.  There are plenty of alarms to go off in the middle of the night to keep you entertained.  Or maybe you'll face the dreaded "my drain line is too short" dilemma when you have to get up during the night to go pee.  Oh - you might also get a weird delivery person.  That shakes things up.

All of this relates to the fact that I haven't posted on here in quite a while.  I honestly felt like I wasn't sure I had anything to say.  But I do.  I'm deep into the routine of PD.  It seems pretty humdrum to me, however, I know there's more to talk about.

Lately I have been wrestling with the issue of food.  I've had some really excellent lab work lately - I mean, it's unusually good.  But it came with some sacrifice.  Yes, the medications do counteract some of the "bad" things we eat.  I still need to do some work on my part, though. 

It's a little bit of a mind game at times.  The PD staff want us to eat plenty of protein.  But frankly, the best stuff with protein is also usually served with bread or pasta.  Or cheese.  I've been skipping the carbs and the dairy now for quite a while.  I would not say it has been easy.  And I have actually been a bit cranky about it.  What I need is to find a balance.  A way to satisfy the cravings without starting a new co-dependent love affair with bread and cheese.

I've learned that my body is a bit on the wheat-intolerant side.  Which is actually a good thing - I mean, if I eat bread I will feel terrible.   So... that's good, right?  Not really.  Bread is delicious.  And it's been a part of my diet my whole life.  I kinda love it.

After reviewing my labs from the last year, I can see spikes in the phosphorus values for the months where I ate with wild abandon.  I have real proof that my diet impacts my health.  But what I'm wondering is how to balance the way the diet impacts my health and the way my diet impacts my happiness.

When I get a good lab report (meaning, when I have a month of eating protein, veggies, fruit, and only rice for carbs), I get praised.  I get told I'm doing this right.  But it's directly related to the sacrifices I make in my diet.  And I think this is a gateway to an eating disorder.

Having to be so aware of every single thing one eats is a delicate issue.  I'm just starting to poke at the surface of this topic.  I'm going to think on it some more and see where this goes.

For the record, my speculation that my dialysis routine is related or could be related to an eating disorder is a very general idea.  It's not a fact.  And I haven't exactly figured out how it all fits together.   I'm just saying that I can sense a real struggle developing in me related to food intake and dialysis labs.  I realize this is unusually personal information, but I felt like sharing these thoughts and maybe they will mean something to you.

Eating well is like being good.  It has it's rewards.  But eating with abandon is just so darned delicious.  I hate to think of food as having a value of being "deserved," yet I can't help but feel there is something deeper - something psychological? - going on here.

Will write more as this issue becomes clearer to me.

Please do not view this as a negative aspect of PD.  It's really more of an issue simply related to anyone with a medical condition.  Weighing the quality of life lived against the quantity of life expected.  I think it deserves some thought.

Hope you are all well.

- Rachael M.

Potassium?!

Potassium is supposed to be the lab value that dialysis patients don't have to worry about. Well, apparently that's wrong because I just finished three doses of Resenium (spelling, will correct later) over 6 hours to bring my potassium levels down. I also got to take Lactulose along with it. If you don't know, Lactulose is a laxative.

I have never spent so much time in my bathroom.

I have never had a problem with constipation, so I'm ticked that my doctor prescribed it, and I didn't really think of it until after I'd chugged the first dose.

It's 2:00am. I finished the last dosage around 1am.  Apparently doctors/clinics don't think patients have lives or jobs when giving these orders. I have to be up in 5 hours to teach, then I have a 2 hour meeting..  Yeah, it's going to be a stellar day today.

That damn phosphorus

I know! It has been way too long since I have written. A little writer's block, a lot of work (3 jobs, the countdown is on to my 3 weeks off at Christmas!!), and really nothing much going on.

That all changed this weekend when I started noticing lower calf muscle pain.  My first thought was "how much can i keep from my doctor?" (I am a good patient, but not a great patient, especially diet wise. I have unresolved food issues.  I'm currently in therapy, so we'll see how that goes. TMI? OK, moving along. :)

I also thought it was maybe because I hadn't exercised in a week--snow is not my friend. I ordered an exercise bike, so figured the 10 days waiting for that would be OK. Not so, young grasshopper! Not so.  So I've re-added walking to my evening schedule (yes, you're right, the snow has melted).

Here's the main thing that I noticed happening:  if I sat for long periods of time, my legs would be weak/shaky and painful, and I felt like I would have to restart myself--moving was at first painful.  After walking for a couple of minutes, I was fine. Moving at regular speed (lightspeed) and with little to no pain.  However, once I sat again, the whole process would restart. Since one of my jobs is sedentary, I took two days off to keep myself out of that environment and I was able to be at home and up and moving around a lot.  Sit, read for 20 minutes, walk around the house, repeat. Not a bad couple of days off, but a little scary while waiting for the phosphorus to flush out.

The culprit? I should've known right away--yeah, too much phosphorus in my blood, along with some slight malnutrition due to not enough protein. UGH. Ladies & gentlemen, the balance between protein, calcium, phosphorus, etc is a FINE LINE to tread.

So, I started looking up information for low phosphorus foods.  What I really wanted were some numbers I could understand. I never felt like I got that from my clinic.  I was pretty honest with them
when I told them I ate sunflower seeds (which I knew were high in phosphorus). What the clinic
failed to tell me was HOW HIGH.

Yesterday I found this fantastic website that breaks down pretty much ALL foods into ALL their components.  So off I stumble to check out foods I eat regularly: bacon, asparagus (high, but acceptable), sticky rice, various other veggies and meals.  Then I very hesitatingly looked up sunflower seeds. Because once you have the information you need, you have to do something with it, like change. And while I've been changing my diet over the past few months and exercising more, I haven't given up sunflower seeds.  It's been a bit of an addiction.  Not good. And no more.

Let me explain the ideal daily amount of phosphorus allowed a dialysis patient who struggles with phosphorus--some of you lucky buggers don't have this problem.  I am jealous as I love foods with phosphorus in them!

800-1200 mg daily. That's it, that's all folks.  It's a pretty low number. A serving of asparagus comes
in at around 72mg/serving (1 cup). White sticky rice is a paltry 40-ish mg/serving. So far so good.  I'm pretty pleased with myself. But the sunflower seeds.  Oh those traitorous seeds:  1478 mg/1 cup
serving.  So I have been overloading my poor system for a couple of years. That makes me sad, because all someone had to do was make me aware of the numbers.  Not in a pushy way, but just
"Hey, RachelT, here's a booklet on phosphorus levels in foods."  I can react to numbers. Lists saying High Phosphorus Food vs Low Phosphorus Substitutes really do nothing for me because I can see the tangibles.  Obviously I need to see hard data and I need to be allowed to look at it on my own.

So. The sunflower seeds are out. I no longer feel compelled to eat them, because frankly, I have a lot of living left to do and I still have old journals that need to be shredded/destroyed.  I don't want them read after my death. I think about things like that!!

Over the past couple of days, the calf muscle pain has started to abate.  I can get up and walk normally.  I have started to look more seriously at what I'm eating and how much it's costing me in phosphorus.  I have blood work tomorrow and I'm sure the labs for phosphorus will be sky high, and
protein will be quite low.  But that's OK because now I know what I'm doing and what numbers I need.

That handy little website? http://nutritiondata.self.com  Type in the food in the search bar and you'll get a complete breakdown.  Brilliant, helpful website.  I am in love with the person/people who put it together. :)

So it took awhile for me to blog--& included a bit of a health scare to get me back to it--so hopefully I'll be back to posting more regularly. If you think I missed anything, or you have questions, leave them in the comments! Thanks for reading!

RachelT

I am not a doctor, nor do I play one on television

Hi!  Rachael M. here!

It's been a while.  Sometimes life surprises you with issues that seem to eat up all your time, you know?  I've had a lot on my plate lately.  Despite this, I keep trying to find time to tell you about a recent experience.

Before I tell you about it, please know this:  I am not advising anyone to do what I did.  I am not claiming any sort of guarantees.  I am not even suggesting that anyone follow my example.  I just want to tell you what happened to me from my point of view alone.

Okay.  On to the story.

My labs for July were not great.  A few things were in balance, but my Phosphorus has been on the rise for the last couple of months.  I know that a lot of the problem is my lax approach toward the balance between food and binders.  But I just couldn't find a way to regularly keep my Phosphorus in check.  I would eat something high in Phosphorus in a small amount, a few times a day.  And think, "It's barely anything so I don't need to take a binder."  But it adds up.

So, I decided to try something drastic as an experiment.  On August 1st, I changed my diet completely.  I went 100% gluten-free, dairy-free, and refined sugar-free.  I've always had digestive trouble and a sense of bloating and discomfort after meals.  So I eliminated all of the possible culprits.  The plan was to add one of these elements (gluten, dairy, sugar) back into my diet slowly and see if I had any reactions.  First I had to completely clear my system.

For the entire month of August, I ate absolutely no wheat, dairy, or refined sugar.  

I had labs drawn at the end of August.  My PD nurse called me with the results and told me the amazing news.  Every one of my lab values was within the proper range.  Not too high, not too low.  My labs were the best labs I've had since I started PD.  July's Phosphorus level was up near 7.  August's was in the 4's.  I was able to not only drop my Phosphorus by a couple of points, but get it into a pretty great place.

What happened?  Well, Phosphorus is very high in foods that are bready and cheesy.  Taking those elements out of my diet gave me a much easier method of controlling Phosphorus and taking my binders.  Without gluten and dairy, snacks became things like fruit, popcorn, V8 juice - things that I can graze on that don't require my usual three Phoslo binders.  The Phosphorus going into my body was dramatically reduced.  The other values all fell into line.

As an added bonus, I haven't had the digestive/bloating issues since living without wheat and dairy.

Anyway, that's what happened.  One month of eliminating all gluten, dairy, and refined sugar from my diet knocked my labs into shape.  All the values were within target range without even trying.  I was surprised at how quickly I lost the cravings for bread and cheese.  I got much more creative with meals.  I built my daily menus around animal protein, fruit, vegetables, rice, and oats.  I never felt unsatisfied or hungry.  And I have seen improvements in my complexion.

Again, this is just what I did as an experiment.  But I thought the impact on my lab work was worth sharing.  I am continuing to eat this way (eating "clean" and leaving out the wheat, dairy, and sugar) and will see if it affects my labs again this month.  I have no plans to add the wheat/dairy back to my diet any time soon.  I'll report back when I get this month's results.

If you have any questions about it, let me know!

Quick post - I haven't forgotten!

I'm not sure if it's been a bad case of writer's block, laziness, or busy-ness..but I have been a HORRIBLE blog updater.  I started a new job over the summer and now I'm working two jobs - teaching ESL at the college, and Admin Support in Counselling Services at the university here in town. Needless to say, this first week has been ... BUSY. I'm lucky if I remember to eat. And winding down at night has been my biggest challenge. I get home around 8:30 and my goal is to be in bed and asleep by 10:30. That hasn't happened this week yet, so I need to figure out how I can wind down more effectively so I get a good night's sleep.

Another challenge has been, of course, dialysis. Not really a challenge in that it's been difficult or anything, but I need to be more organized in setting up my machine earlier in the day when I have time at home and I'm not rushing to get to bed. These are the kinks that I need to work out over the next week or so as I settle into this routine.  Right now I'm telling myself that it's for 4 months - until December. I don't NEED to do both jobs, but I am because I want to be completely debt-free by December and this gives me the means to do that.  All part of the hustle. :)

So I've been thinking off and on what I want today's blog post to be about, and I do have to admit, I'm still stumped. At first I was thinking of writing about some things that bug me about Baxter - the PD machine is too heavy. Seriously. Have they looked into that? It's ridiculous to try and travel with that beast. But overall, Baxter takes pretty good care of us.

I then thought about writing about some of the developments I've been hearing/reading about for dialysis patients:  a coffee-cup sized "kidney" being developed in the States, 3D kidneys being "printed" in Japan (sign me up!!)... These developments are exciting for kidney patients and I'm more interested in going through with one of these procedures than I am with an actual transplant. I'll look for those articles and then post them in the next couple of days.

The Kidney March starts tomorrow. It's a 3 day, 100-km walk held to raise money & awareness for kidney disease. Nick Cannon is one of the big celebrity supporters, given his history of kidney problems. He did the walk last year, but wasn't able to do it this year.  A friend of mine is a renal/transplant nurse and she's on a team that's doing their second year. So proud of them! :)

I'll try and sit down this weekend and come up with an actual post instead of just rambling thoughts!
Rachel T

It's Like a Very Bad Hula Dance

Catheter positioning.  I'd like to think that it is an exact science.  I mean, someone is implanting a catheter into my gut so I hope they really know where it's supposed to go.  What I have learned is that catheters are not identical in placement and function.

I remember talking to a friend of mine who also does PD on a cycler.  She told me that she was gaining weight, felt bloated, and had significantly low UF (ultra filtration - the amount of actual fluid that is removed during the night) numbers in the morning.  She said she could drain just fine during a manual exchange and didn't think there was a real problem with the catheter itself.

Aha.  Positioning.

The way her catheter fell inside her body when she was in bed and the way she slept curled up in a fetal position were causing her to limit the catheter's ability to drain.  A strange little kink or a specific positioning can slow or even stop the drain of fluids.

We talked about it and I told her what I did.

1.  I accepted the fact that there would be four drains during the night.  And I want to get some good, solid sleep.  So if the first three cycles had low drains, that would be okay. 

2.  I had to set my alarm to wake up when the last drain was scheduled to happen.  Usually a bit before, so I could really encourage the final drain.

3.  That final drain would set the tone for my day.  I didn't want to "trap" a lot of fluid inside my abdomen and feel full, sluggish, bloated, or sore all day.  I wanted it all out so that I could have my final fill and be on my way.  Comfortably.

4.  I wake up a bit before that final drain starts.  I sit up to encourage the drain.  I get up and make the bed.  Start recording my cycler information.  Move around.  All of this movement helps me get a complete final drain. 

My friend said that sometimes it seemed like her catheter drained slow/poorly when she had been sedentary for a while.  I completely agreed.  My usual exercise includes alternating walking with cardio DVDs.  A good amount of movement.  What I have found is that during times when I am unable to exercise (having the flu, for example), I need to encourage that catheter's flow in any way I can.

And yes.  I do mean the very bad hula dance.

Last year I had the flu.  I was on the couch for three weeks.  It was just awful.  And that limited activity seemed to cause my catheter to lie stagnant in my body.  No little movements or exercise-related jostling to keep it moving at all.  Every time I had to do my final morning cycler drain, I had to stand up and gyrate my body to get the fluid to flow.  It was ridiculous.  I'm sure I looked ridiculous.  But there I was, standing next to the bed, looking like a drunk hula dancer.  Just moving around to make sure the drain would be complete.

Is this all in my head?  You might think so.  The fact that I have now talked to two other people who have had to do the Bad Hula on occasion tells me that it very well may be a PD "thing."  Unknown.

Generally speaking, I find I drain much better when I stay as active as I can.  Seems like it encourages things to go very well and keeps my insides limber.  I have no science to back this up.  But if you experience poor UF numbers (when they should be higher) in the morning, try sitting up, standing up, and maybe doing your version of the Bad Hula to get things moving. 

Ah, the ridiculous things we think of on PD.  Keeps it interesting!

- Rachael M.

Self-care

Today I'm going to talk a bit about the importance of self-care.

I think this topic is important for everyone, not just dialysis patients. Stress can be deadly, literally:  http://www.livescience.com/2220-stress-deadly.html

If you don't know how to deal with stress in your life, it's time for you to figure it out. Being on dialysis is one of those big life stressors.  According to the Holmes and Rahe Stress Scale, illness is ranked at #6 on their list. So it's up there with death of a family member and divorce. And it's up to you to do the things that make you happy. And if nothing makes you happy, then find something that does because living as a stressed person is doing you more harm than good.  Plus, you're probably pretty miserable to be around and you want to build a positive support system around yourself.

I am pretty busy during the week with work, volunteering, and other commitments. I try to schedule movies out, dinners, and other social activities during the week because the weekend is for the introverted part of me, when I can read, relax, and rejuvenate--and be alone!  I will catch up on TV programs that I have PVR'd, get lost in a book (right now I'm reading through the Game of Thrones series), do spa stuff for myself, and get outside for some peace and quiet. By the time Monday rolls around, I'm ready to be back at work interacting with people.

So think about what you enjoy. What hobbies do you have? Have you dropped any of your hobbies since starting on dialysis? Why? Can you do something similar to replace that hobby or passion? Is there something you've always wanted to try?

Remember that exercise is one of the best de-stressors out there. It doesn't have to be anything major - but a walk around the block is a good start. Keep your blood flowing and your heart pumping. Keep yourself in shape. Remind yourself that you are ALIVE. If you enjoy something like swimming, figure it out. There are waterproof bandages available in medical supply shops and if your exit site is well-healed, there's no reason you can't swim. Over the winter I usually take an aquajog or aquafit class a couple of times a week. After being in the pool for a couple of hours, I do a quick dressing change in the change room (in a private cubicle) and then go home and shower and do a proper dressing change. In my 8 years of being on dialysis I have never had an infection because I take GOOD care of my exit site - but I also don't let it stop me from doing activities I enjoy. I've done belly dancing, weight lifting, and zumba. Some days it's a bit of a challenge if my blood pressure is low, but then I just take it slow and do what I can. You can, too.

Another aspect of self-care is taking care of yourself mentally. If you're dealing with the grief of being on dialysis (remember, #6 on the list!), then go for counselling. Taking care of your mental health is just as important as your physical health and I think in many ways it makes you stronger. Be willing to make yourself mentally stronger. I was resistant to counselling of any kind for a long time, but a couple of semi-important events convinced me that it would be beneficial for me to take better care of myself mentally. I've always been self-aware, but a little afraid of what some psychologist or counsellor might find while fishing around in my brain. However, it's a good idea to move past that fear and invest in yourself. If you're looking at counselling as a self-care option, talk to the social worker at your clinic. He or she should be able to refer you to someone to work with.

Finally, like I've already said: figure out what makes you happy and do things that you enjoy. Take time for yourself, away from other people. It's OK. And your health will thank you for it!

RachelT

Being prepared

It is really hard to write about disaster preparedness because there is SO MUCH to think about! First, let's get the Zombie Apocalypse preparation out of the way. It's quite easy.

See. Nothing to it. :)

As I mentioned in my previous post, the areas to the north and east of me were heavily flooded. A lot of snow over the winter and heavy rains this spring have resulted in a lot of run off from the mountains. It all combined during one deluge in one day. The people of High River still haven't been allowed back into their town and they're getting angry. A few people managed to sneak into their houses (making their way past police barricades) and were promptly electrocuted when they decided to try and turn the lights on in their still flooded homes.  There's a reason common sense isn't so common anymore.

Anyway, I'm getting a little off-track here! My intention is to talk about disaster preparedness, not other people's lack of common sense! :)

Disaster can strike in many ways: flooding, tornadoes, earthquakes, fire, etc. The flooding that occurred in Calgary and surrounding areas, happened in under 30 minutes but continued on over a couple of days. People had almost no time to gather their things, run to their cars, and escape the area. Now, imagine being on dialysis and trying to gather up the things you need to survive. Not only are you a human trying to survive, you are a person with a chronic illness trying to survive.
Doubly stressful.

First and foremost, you will need your cycler. If I had 15 minutes to leave my home, that is about the only thing other than my computers, changes of clothes, and phone that I would grab. Everything else is replaceable. I would leave the supplies up to Baxter to deal with. They have warehouses full of stuff; I don't need to be hauling it around in an emergency. Same goes for prescriptions. Everything is on file with your pharmacy or doctor's office. They can take care of your prescriptions.

Insurance papers and pictures of your things. I am a bit OCD, so I have pictures of all my stuff in with my insurance papers. This way, if I lose my house to fire or something, I have a record of all my possessions. Possessions are just things, but I pay insurance so they can be replaced in the event of loss.

STAY ORGANIZED. Keep all your important documents in one place. Preferably in a fire-proof lock box. That's in a perfect world. I have all mine in a Rubbermaid container. But it's still easy to grab, and everything is there.

What's your backup plan? Do you have people you can stay with if you need to get out? Do you have an emergency fund so you can pay for a hotel until you are reimbursed? Do you know your area well enough to take alternate routes out?

Do you have an emergency kit with flashlights, batteries, water, canned food, matches, blankets, etc? When I lived in Japan, I had an emergency kit in case of an earthquake. It had clothes, water, shoes, a flashlight, extra batteries, and food in it. It was always beside my door in case I needed to leave in a hurry.

Do you have enough food and water in your house to survive a power outage? If you're in an area that has ice storms (like southern Ontario), do you have a back up generator?
What would you do about your dialysis in case of a power outage (hint: manual exchanges).

My intent is not to create a sense of fear, but instead a sense of awareness that being prepared is better than panicking. Yes, you will still probably panic, but at least you will be prepared and being on dialysis won't be such a big thing for you or others in the event of an emergency. The better prepared you are, the more in control you will feel.

If I missed anything or you can add anything, please do!

RachelT

To share or not to share?

There are people in my life who have known me for many years who do not know that I am a PD patient.  I simply haven't told them.  It never mattered.  My closest friends and family know, of course.  But sometimes I need to get a feel for a person's personality before I share anything related to PD.

Why?  Because of the pity issue.

One thing I have been very protective of since becoming a PD patient is my ability to be viewed as a complete person and just as I am.  I've been disappointed in the past by people who forget to treat me as a friend and instead treat me as a "sick person."

Rachel and I were talking once about the difference between someone saying, "Hey!  How are you?" and someone tilting their head to the side and gently saying, "Hey... how ARE you?"  It's frustrating when people assume that your need to do dialysis makes you somehow sad all the time and deserving of sympathy.  The option to do PD instead of hemo is a choice that gives me freedom to feel much more "normal" in my daily living.  As soon as I button my pants, my disability is hidden.  And I like it that way.

When I meet people, I need time to get to know them and see how they behave and how/if they gossip about other people in their lives.  If someone is a real talker and loves to share personal information about other people just to sound more interesting, they certainly don't need to know about my private issues. 

My closest friends never bring up PD.  If there's something I want to share with them, I will.  We have so many other things to talk about.  It seems trite to spend our time together to blah blah blah about the PD process.  And it makes me feel like a complete person.  Not a person with issues, unable to take the focus away from myself.

I've met people with various disabilities who just love to talk about their problems.  I understand the frustration and the importance of their concerns, but after a while it gets to be too much.  I really wanted to avoid being that person.  I didn't want my identity to be "the PD girl."  There's got to be more to a person than just their disability.

It's not rooted in shame.  It's rooted in finding appropriate outlets for discussing my issues.  And setting aside time for PD-specific talk with people I love.  And not bringing it to light every single time we meet.  Also, I love the ability to keep my PD to myself and let people get to know me as I am - as a person - before they put any sort of PD label on me.  It makes me stronger and more confident.

Choosing PD over hemo is another way to exert control in my life.  To find privacy when I need it.  To live more closely to my ideals.  And to define myself with my own parameters.

- Rachael M.

upcoming post

http://news.nationalpost.com/2013/06/20/pictures-and-videos-of-massive-flooding-in-canmore-and-southern-alberta/

This is what's been going on in this part of the world over the past week. Therefore, I started thinking about what dialysis/PD patients should do in case of an emergency. I'm planning to post by Friday, but I just wanted to give a heads up on topic and why I haven't posted recently. I am south of Calgary, so wasn't affected in the same way as the people in Calgary, Canmore, High River, and Medicine Hat. Thankfully. But more on that by Friday.

Drain Bags and Dreams

A couple of thoughts are floating around in my brain today.  Just some information that I feel should be here - and if I don't write it, I'm sure I'll forget it.

1.  Something that the training staff/doctors don't tell PD patients is that PD has quirks.  They usually aren't PD patients themselves and have no actual experience with the process.  They don't know what it feels like to have a slow drain, to have to sit up to complete a drain, or to deal with the actual equipment.  Something I think is worth mentioning is the situation of using a drain bag.

Some cycler users run the tubing from the catheter straight into a tub or toilet.  This is a good option for people who have a convenient layout in their homes.  I don't use this method because of the location of the bathroom in relation to the bed.  It would be a tripping hazard for my husband.  Also, I have cats.  And I don't want to tempt them with a tube of bubbling fluid that looks like it would be fun to play with.  So I use a drain bag to collect the dialysis fluid.

A drain bag is exactly what it sounds like.  A big, square, plastic bag.  What happens is that most people who are going to use a drain bag are told to "put it on the floor."  Well.  Let me tell you what kind of nightmare this can create.

All it takes is one clamp that isn't fully closed and the drain bag will leak all of its contents onto that floor.  And if you have carpet in your home, you may be calling a cleaning company or possibly having carpet replaced.  Imagine 10 or more liters of fluid just seeping into your floor.  It's awful.  I've seen posts on various online forums with people asking how to clean up after these accidents.  Remember - the fluid you are removing is very much like urine.  And that's what would spill out all over the floor.  Not pleasant.

I was never advised about this - it's just something I figured out and really think should be shared with anyone who uses a drain bag.  Get a plastic bin from the store (Target, WalMart, etc.) and put the drain bag inside the plastic bin.  Just make that part of your setup routine.  Over the past seven years or so, I have woken up to a plastic bin full of leaked fluid several times.  I've forgotten to close a clamp.  And I can dump the plastic bin into the tub.  And not think about having to clean the carpet.  Which would be a horrible mess.

Save yourself the agony of a possible cleaning crisis and use a plastic bin if you use a drain bag.


2.  A peculiar side effect of starting on the cycler is PD dreams.  Since being on PD, it seems like a few times a month I have quasi-nightmares involving the cycler tubing.  I dream that I am at a party and I'm still connected to my machine.  Or that I have disconnected from my cycler and can't find a cap to close my catheter.

I think this is normal and natural.  We are trained on the specifics of actually doing PD, but not on how to deal with it emotionally.  That burden is left to us to figure out.  I think PD dreams are part of my mind's way of expressing frustration or fear.  When you think about it, it's a little strange being connected to a machine at night.  Sometimes I feel like an astronaut, connected to the ship by a tube and I can only go so far because of my lifeline.

Maybe you won't experience the strange PD dreams, but if you do, just know you are not alone.

- Rachael M.

starting PD

I’ve been thinking about this post all week. I want to make this post simple and clear, not overloaded with information.

Rachael spoke previously about the idea of Why PD? Our answer is always Why not?? It’s so much easier on the body than hemo and really gives you a sense of control over your health and welfare.

For this post I want to talk a little more about the process of starting on PD. Your clinic likely offers an orientation when you start on dialysis and presens  all types of therapy to you. You can do at home hemo, in clinic hemo, and PD.  They will of course say that a transplant is the optimal form of therapy, but is it really? We all know what the waiting lists are like and you might even know what it’s like to want a living donor, but are too hesitant to ask family and friends to donate because it is a BIG DEAL.

That’ll be another post for another day! J

I decided very quickly that I wanted to switch from hemo to PD. At first, I hadn’t been interested in doing anything other than what I was doing because I was still adjusting to the idea of being on dialysis and adjusting my life to that whole process. However, I got a job working nights and dragging myself to the dialysis clinic after working all night and sitting on a machine for 3 hours was REALLY unappealing. Thus, my decision was made to switch to PD.

I was working a week on-week off rotation and the surgeon booked me in for catheter placement surgery on the Tuesday of my week off. In my naivete I thought a week of recovery would be more than enough. HAHAHA. It wasn’t.

The catheter surgery is a day surgery procedure. I checked in to the hospital in the morning, the surgery happened at about 1pm and I was home by 5. My only instructions were to keep an eye on the catheter site for bleeding through the bandages and to NOT MOVE AROUND.

Unfortunately, the catheter site wouldn’t stop bleeding, so I drove myself in to emerg and a surgical resident did a little bit of restitching on the catheter to close the site a little tighter. That helped and I began the healing process. I have a REALLY hard time sitting still, so my healing time was perhaps a little longer than normal. I ended up taking an extra week off work because I still couldn’t move around freely. It didn’t hurt, it was just tender and prone to bleeding (because I kept moving around).

I still continued to do hemo while the catheter site healed. I think it took about a month before I started on PD. In that time I also did the PD training – a full day of instruction and practice using the cycler, setting up bags, learning about alarms and proper care & treatment. The training was excellent and the only problem I had was the nurse yelling at me because she was used to training elderly patients with bad hearing. I did tell her that she didn't need to yell, and that helped. J

One bad/disappointing/frustrating moment while all this was going on – and hopefully this reminds nurses out there how important it is to be encouraging. One nurse had the gall to tell me that PD didn’t usually work on patients because the catheter floated up inside the peritoneal cavity instead of staying lower down like it should. She told me that I shouldn't get my hopes up. Boy, was I pissed off. So, nurses, even if you think that, keep your mouths shut. Please and thanks. J

The worst part for me, and I've had people agree and disagree with me here, was the flushing of the line once the healing was well underway and I was ready to start PD on my own at home. PAIN. Oh my heavens. Pain. I have tattoos and and those didn't hurt AT ALL. Getting the line flushed was pain and nausea all rolled into one. I’m not sure if it was the temperature of the solution or what. I just wanted to curl into a ball and cry. Oh wait, I did.

I’d like to tell you why the line flush is important or necessary, but I’m not remembering why. It might have to do with the healing of the catheter, or the solution that’s put into the tubing during the surgery. I can definitely ask and get back to you. I just remember that it was not pleasant. Like I said before, though, I’ve talked to people who have had no pain during the flushing process. So there is hope that yours will be pain free, too!

I first started out doing manual exchanges 4 times a day. The exchanges take about 20 minutes and I would do them in my kitchen and do dishes or read while draining and filling. After a couple of months of that, I was able to switch over to the cycler as I had the right type of peritoneal membrane for the cycler. There are four types of perintoneal membrane, with two of those types being right to use the cycler. You’ll want to speak more to your nephrologist or PD nurse about that.

To wrap up, switching to PD was the best decision for me. It is easy, I have more energy, and I feel –almost- like a normal person. I like that I can hook myself up at night, go to sleep, and be done in the morning. I like that I can control the machine and set it up for MY schedule. I’m not at the whim of a clinic and a clinic schedule. I don’t have to worry that I’ll get a nurse who is in a hurry, overworked, distracted, or just in general pissy while poking me with needles. I like that there are no needles, period.

Don’t get stuck thinking that your form of therapy is your only choice because your doctor chose it for you. Be the manager of your care and fight for your care, your comfort, your health, and your body.

 Coming up: why I'm on PD and why I'm not pursuing a transplant (yet).

RachelT

Why aren't more people doing PD?

When I explain PD to someone, I give them a lot of positive information.  Things like:

No needles - no blood.

Privacy.

Fewer dietary/fluid intake restrictions.

No 3-4 hour appointments three times a week.

No spikes in blood pressure or stress on the body.

Using the cycler means your whole day is free.


And they usually respond, "Then, why are people still choosing to do hemodialysis?"

I can only answer with my own opinions, of course.  When I was recovering from the PD catheter surgery and attending my final hemo appointments, I asked several patients at the clinic if they were considering PD.  They all said no for various reasons.  Things like:

It's too scary.

I don't want medical equipment in my home - my children would be scared.

I can relax here and let someone else do the work.

It's likely that I will get an infection.

I don't understand it.


Which is a shame, because there were plenty of folks at the hemo clinic who might benefit from doing PD.  There were patients as young as 19 who could possibly have enjoyed full days of life without visits to the hemo clinic. 

To tackle the main objections, I say this:

It's not scary.  It's actually quite easy.  I spend about 15 - 20 minutes setting up my cycler.  Right before I go to bed, I connect and slip off to sleep.  I wake up dialyzed.  And go on about my day.  There's nothing scary about that.  Occasionally, I will kink the tubing or get into an awkward sleeping position and an alarm will sound.  And I hit a button and move my body and all is well.  Back to sleep.  I don't feel the dialysis happening.  Some people experience an end-of-drain pain.  That is when you are emptying fluid and it's "pulling" on your abdomen.  It's like a cramp and can be annoying, but goes away when you start to fill with fluid again.  It all feels very gentle and natural.  You fill with warmed fluid, you drain the fluid.   And if you are doing manual exchanges, this process happens with the aid of an IV pole instead of a machine.  When I did manual exchanges, I sat at my home office desk and surfed the Internet during the draining/filling process.

The medical equipment in your home is not scary.  Manual PD-ers will have boxes of solution and supplies.  An IV pole.  And that's about it.  If there are children in the house, I think they would be interested in the science of it all.  And happy to have a parent who doesn't disappear for the hemo appointments and feel "wiped out" after hemodialysis.  The equipment for the cycler is even less visible.  The machine sits by the side of the bed and there isn't any use of it during the day.  Being honest with your family about your dialysis needs isn't scary.  It's part of the acceptance of kidney disease.  My family feels happy for me that I have a way to take care of myself that fits in with my lifestyle. 

Sure, you can let someone else do the work at the hemo clinic.  Along with dozens of other patients.  You are visible to everyone.  No privacy.  Sitting in a chair for a few hours and smelling all the not-so-lovely smells of a hemo unit.  Hearing alarms going off constantly.   Watching people have anxiety attacks.  Having a mix of non-ambulatory and non-communicative patients from nursing homes.  I have seen people have heart attacks and strokes while on hemo.  And there is no way to escape what you see.  With PD, the process is gentle on the body and doesn't cause the foot and leg cramps that hemo can.  And PD is done in the comfort and privacy of your own home or office or wherever you choose.  If you are new to kidney issues, and you have a dialysis decision to make soon, visit a hemo clinic first.  Go and walk through and see if it feels right for you.  It was not right for me.  I was resentful of how much time I had to spend there.  Sure, someone else did all the work for me but that was at the expense of much of daily life.

Infections are scary.  PD patients are trained well on how to make clean connections and disconnections with our catheters.  Easy steps are in place to keep you healthy.  Wear a mask.  Wash your hands.  Move quickly and cleanly.  Don't let your pets chew on the tubing.  Don't assume your floor is somehow cleaner than everyone else's - if something falls on the floor, discard it and follow protocol for a clean connection to your catheter.  It becomes habit over time.  It gets easier to do PD wisely and carefully.  It's second nature for me after all these years.  If you get an infection, think about what you can do to better protect yourself.  And if the infection is a fluke that can't be traced to your actions or an accidental incident, your PD nurse will talk you through the steps for treating it.  In my opinion, PD patients are trained to have a healthy dose of fear of infections.  Which isn't a bad thing.  And you'll find a way to do your dialysis routine in a way that keeps you healthy and safe.  Follow the steps that you have learned and don't obsess about infection.  Just do your best to avoid them. 

If you don't understand exactly what PD is and you are reading this blog, ask any questions you have.  Send us an email.  Look online for all available resources.  Visit a PD clinic.  Take some time to get that understanding.  Doctors and nurses can give you the facts.  Rachel and I can share our experiences.  No question is "bad" or inappropriate.  We want to help you figure it out and possibly enhance your dialysis experience.  Not knowing how PD works might keep you from trying it, but if you develop an understanding of PD you might find that it is a better dialysis option for you.


Questions?  We are always here to help. 

- RM

The journey

This was a reminder that I needed to read!

I was going to talk about the start of being on PD--getting the catheter, flushing the line, etc. but I came across the above quote and had a bit of an aha moment on Friday that I've been ruminating over all weekend.  So next time I'll write about all that fun stuff. :)

On Friday, I was in an orientation session at my new job and I really--I mean, REALLY--realized that other people have their own shit going on. Yes, dialysis is a big thing, but other things are big for other people. My issues are important because they are my issues, the same as other people's issues are important to them because they are their issues. Have I said this already? The woman sitting next to me was diabetic, the woman across from me had some kind of lymphedema condition. For them, those things are a part of who they are. They have to manage their conditions on a daily basis, the same way I do. And we are all more than our disease or condition.

Of course I know that, and I'll say it to other people, but do I believe it? Not everyday.

I think acceptance can be hard. I think it's OK to grieve for the things you might miss. For example, unless I have a transplant, I can't have children. Am I OK with that? Mostly, yes. Do I still need to grieve? Yes. And I have to give myself permission to do so.

You have to give yourself permission to get pissed off, to cry, to rant, to be happy, to chase your dreams, to fall in or out of love, to LIVE. We are on a journey. We are not planning to arrive at a destination (say, a successful transplant) and THEN live. We want to live NOW. To embrace what is happening now. I am not always grateful for this life on dialysis, but I should be thankful every single day because every single day it means I am alive. I woke up this morning and I was breathing. That's a pretty good day already. :)

So I learned a lesson this weekend that other people have big things going on in their lives and that I am not the only one. We all have a story. Take time to listen to what other people have to say. We are all on a journey. Join up with other people and connect.
Accept it. Embrace it. Rock it.:)

RachelT

Answering the questions I couldn't ask

After a few weeks of hemodialysis, a clinic technician suggested PD to me.  She said that it was a good choice for people who want to stay independent.  When I started to look into it, there wasn't much to look into.  I got some basic information, but I wanted to talk to an actual PD patient about the reality of it.  However, I didn't know any.

I attended a few training sessions and watched some very cheesy videos.  And read some very dry brochures.  I understood that PD was potentially a better choice for me, but a lot of questions were swirling around in my head.  Now that I have been doing PD for many years, I can answer them for you.  In case you also wonder the kind of strange things that I sometimes wondered.


Q:  Will people think I am pregnant?

A:  Obviously, if you are a man, no.  But for women, this is a sensitive issue.  Putting fluid into the abdomen sounds like a recipe for image disaster.  In my mind, I imagined myself with a big, round, fat belly.  I assumed the fluid would collect in a big bump in my gut.  I didn't know what it would really look like.  As it turns out, the fluid fills the abdominal cavity and only when I had particularly large amounts of fluid dwelling did it visibly register.  And even then it was minimal.  I didn't even have to buy new clothes.  And nobody asked me about it.


Q:  Will the fluid make me feel full all the time, causing me to lose my appetite?

A:  This is actually a possibility for some people.  It depends on how much fluid you carry.  For me, when my weight is low, higher amounts of fluid do make me want to eat less.  So I keep lower amounts of fluid in my body during the day to avoid losing my appetite.  Using the cycler also eliminates the need for me to have a lot of fluid dwelling during the day.


Q:  Will my catheter get caught on my clothing or be visible to people?

A:  No.  Tape it down and pull your underwear up.  No problem.


Q:  If I use the cycler machine, will I be stuck in bed if there is an emergency?

A:  No.  There are screw-on caps for your catheter.  If you need or want to get out of bed, you can disconnect easily and safely.  I sometimes disconnect if I have insomnia and go into the living room to watch tv.  Cycler cassettes (the equipment with the tubing connecting you to the machine) have different lengths of tubing.  Make sure you ask for one that is long enough for your needs (long enough to allow you to reach the bathroom from your bed - it's nice to have that convenience without disconnecting in case you need to get there quick).


Q:  Is it difficult to sleep comfortably with the cycler tubing connected to me during the night?

A:  Not for me.  It just sort of falls off the side of the bed.  You figure it out pretty quick and are able to change sleeping positions as you need to.  You can also control the settings on the cycler to quiet the alarms and turn off the lighted display.


Q:  When I drain fluid out of my body, will it be bloody or scary looking?

A:  Generally, no.  Most of the time it will look like urine.  A light yellow fluid.  Occasionally, when you strain yourself, you might burst a tiny blood vessel.  When this happens, a few drops of blood will drain out with the fluid.  However, even a few drops of blood can tint the fluid pink or red.  It will look like you are losing a lot of blood, but you're not.  Bloody drain fluid can be startling, but in most cases it is a very temporary thing.  You will be trained on what to do if it continues, but it usually goes away very quickly.


Q:  If my manual PD prescription involves four exchanges per day with a full bag of fluid, how can I enjoy myself if I want to go bowling/dancing/out for all-you-can-eat buffet?  Won't I be uncomfortable?

A:  Your PD prescription is designed to give you the best possible benefits of dialysis.  If you follow your prescription regularly, it will support better health.  As an independent person, when opportunities for having fun come up, you will want to take advantage of them.  What I do when these occasions arise is simply adjust the amount of fluid in my body.  If I know I have plans to go out for a big steak dinner or to a party with dancing or for a long day of shopping, I want to be extremely comfortable.  For that time, I will fill with a minimal amount of dialysate and enjoy myself.  Then get right back on track with my usual prescription amounts.  One afternoon or evening with less solution inside the body does not undo all of my efforts to take care of myself.


I'm sure I'll think of more issues that had me perplexed before actually starting PD.  I'll post them when I do.  And I'll happily answer your questions as well.

- RM

A Question of Honesty

Rachel's previous post about dating while on PD started a conversation between us that kept peeling away layers of honest concerns.  And revealed more concerns. 

Before I go nutty on the post I had planned, I want to support what Rachel is saying.  And add a few thoughts.

We can tell you all the good stuff about doing PD.  We would be lying if we said there were no issues.  And since we agreed to be completely truthful about our PD experiences, there are some aspects of PD that present concerns.  One of our primary goals for blogging about PD is that we hope to write the blog we wish we could have read when we started on PD.  We wanted to write about the real experiences that your medical team can't tell you about.  Here are some thoughts that came to mind after reading Rachel's amazing post.

1.  You know this, but here it is in black and white:  There will be a catheter on the outside of our bodies.  A plastic tube.  A thing.  A piece of medical equipment.  Hanging off the outside of the body.  Can you handle this?  You probably can.  But be prepared for days when you resent it.  When I tell someone that I am a dialysis patient, sometimes they tell me, "You look wonderful!"  What I think they mean is, "You look wonderful - with your clothes on!"  It can be a struggle to accept the new physicality of PD.  Once I get my pants on, I feel normal.  When I see myself out of the shower with the catheter, it can be quite striking.  And I mean "striking" as in... unusual.  It's just not what you expect to see on a body.

2.  The catheter is the thing that defines our disability.  If there wasn't a catheter, the whole issue of dialysis would be completely hidden.  But that's not possible with PD.  The catheter is a lifeline.  But it can come to represent a lot more.  And can take over our definitions of ourselves.  Can you deal with that?  It's an unusual kind of accommodation for dialysis.  It makes so much of our lives really great.  But it's always there.  And changes your body.

3.  When we see someone who has gone through chemotherapy, we tell them they are brave and beautiful.  Do we not also deserve that for ourselves?  Of course we do.  But we are a nearly-hidden population and people may not even know what we go through.  So we should be telling ourselves this.  We want to encourage positive motivation, but acknowledge that self-esteem can be a hurdle.  I find that when I meet someone with an obvious disability or physical affectation, I think, "They are so strong and awesome."  Maybe we need to tell this to ourselves more often.  It's something I know I am working through.  Even after all these years on PD.  I would love someone with a disability.  Someone can love me, right?  I can love me, too, right?

4.  Are we living normal lives?  Yes and no.  I am doing what I want to do within the few limitations of PD.  Sometimes I wonder if what I really mean is, "PD is great because it's better than hemodialysis."  The point of view changes all the time for me.  I know I don't want to do hemo.  But really, I also don't want to do any dialysis.  I just chose the method that works for me.  Am I honestly dealing with the self-image issues and limitations or am I smiling through the disappointments?  For the most part, I am okay with all of this.  PD was so incredibly freeing after trying hemo, so I'm comparatively happy.  Just know that there will be days when you feel like all is right with your PD-filled life.  And there will be days when you might resent it.  It's kind of a big deal.  We need it to survive.  So, maybe that sense of need causes us to put aside the resentments.  I mean, what is the alternative?

This blog is alive.  It's changing all the time.  A work in progress.  New ideas and thoughts are going to come up all the time.  And we will try our best to address them with candor and honesty.

Rachel talked about the issues associated with dating while on PD.  Her ability to open up about the truths of her experiences brought a lot of things to the surface that we wanted to discuss.  We have a lot of time to cover a lot of topics.  Every so often we will go off on a tangent and simply talk about what we are feeling at that moment.  We are so thankful you are reading.  And hope you won't feel alone on your PD journey.

- Rachael M.

Dating on dialysis...or not...

Of all the posts that we do, I think this is going to be the hardest one for me to push "publish" on.  Rachael and I promised each other, and therefore you, that we would be totally honest about this dialysis life thing. No glossing it over, no making it sound OK when sometimes it really isn't. I think we both bring positive attitudes to the table, so that definitely helps our health and our outlook and how we take on this challenge of dialysis.

As you can see from the blog title, today's subject is dating. I am single, Rachael is married. She will bring other issues to the relationship dialogue that I can't address.

I have never been big into the dating scene. I like it, it's fun and I've been on some great dates - both before and after dialysis. I don't think I've particularly liked myself enough to have the confidence to date a lot, or even to commit to a relationship. I find it challenging to build up the relationship to the point of being comfortable with another person.
Hmmmmmm.....How can I explain? You know the friendships you have from high school? People that have known you for so long that you don't have to explain yourself to them? I LOVE those relationships, so when dating, I find it exhausting and frustrating to try and get to that point with someone I've just met.

Now add a chronic illness into the mix.

I always struggle with how to tell someone that I'm on dialysis and that it is a major part of my life.  Heck, it is my life. How and when do you tell someone this major thing? Is it a first date confession? A third date revelation? I have never found a balance.
And when I've told someone...well, I've gotten a very good view of their ass as they've hightailed it in the other direction. It IS a big thing to take on, I get that...but I'm still the same person.

So then I start to think that maybe they just needed the excuse to run the other way.

And hello...bing bing bing...*rejection*!

And thus, dating on dialysis sucks.

I don't do it. For the past few (many?) years, I've figured that it's better to shut that part of my life down and focus on work and hobbies and more work so that I don't have to keep putting myself out there in order to be, once again, rejected. It is here that I feel like I am less of a person and more of a disease. I always think - who wants to touch me and my catheter? Honestly, my catheter is a small part of my body, but when it comes to affection, it looms in my head as the ONLY part of my body.

When I was on hemo, I had a central line going from under my collarbone to my heart and it didn't bother me half as much as the catheter on my stomach does. And you could see the central line. Perhaps that's why I was OK with it. People could see it if I wore a v-neck or open collar shirt and it didn't bother me. I was definitely more comfortable with my body and with dating and with being intimate with someone when I was on hemo.

Weird. I wonder why that is.

Anyway, that is my issue. I hope it's not yours. I hope you meet a man or a woman who looks past the disease and into your heart and soul and mind and gets to know you as YOU.

I know we are trying to create a bit of a manual for you to use as you move through a life on dialysis; I wish in this area that I had some good advice, but right now I don't. I've said to Rachael that this blog is better than therapy; and as we progress with our writing, perhaps I will resolve some of the issues I have and become more at peace with dating while on dialysis. And then I'll write fun posts about things to do that don't tire you out and how to break the news to someone and how great it is to have someone in your corner.  And how someone looks giving you a hug instead of running the other way. :)

I'd like to get to the point where I don't care what people think. That what people see is what they get and if they don't like it, screw 'em. I have a lot to offer and ... and ... but I'm not there yet.

So maybe you, our readers, will have advice for me on this topic instead of the other way around! :) (and going back on hemo is NOT the option I'm looking for!) :)

Thanks for listening.
RachelT

oh that phosphorus

One of the many MANY benefits of PD is that there are very few diet and fluid restrictions. I'm not saying that you can go out and drink your face off, but on the whole, you can do almost whatever you please.  Your labs will give you a much better picture if you're on the right track or if there are modifications that you need to make.

Like Rachael mentioned, she has cut out dairy.  That is something I have also done, for the most part. I still add cheese to cauliflower, or drink milk every once in awhile, but not to any great degree.  You ARE allowed some dairy each day, but once you cut it out, it's just easier to keep it out of your diet.

As you are balancing and adjusting your diet, one side effect you will notice is ITCHINESS. There's nothing you can do other than grin and bear it. It will go away. It's just your body getting rid of the extra phosphorus in your system. Itchiness can also happen if your dialysis isn't working at its best. Something to pay attention to!

Both Rachael and I have consistently struggled with our phosphorus levels. I imagine most PD patients do because it is in EVERYTHING. A couple of years back we kept up a running conversation about what we were eating in an effort to bring our phosphorus levels down prior to bloodwork being done. As soon as my bloodwork was done for the month, I would go and eat ice cream, buy sunflower seeds, and basically cram anything and everything phosphorus loaded into my face. :) As a "reward."

Lately I haven't cared all that much, however Rachael's post has actually gotten me thinking more long-term about my lab values. It is SO HARD to think long-term when it comes to managing a disease. You get so used to living with the thing every day, that you forget that it takes long-term daily management in order to have long-term good health. So her post about labs was a good reminder to me to behave myself and to care more about what I eat.

We do want to start posting recipes to help others of you out there with healthy eating and with learning about good recipes that don't make you feel like you're missing out on anything. We should also put up a list of foods you can and can't eat - or foods you can substitute. For example, Coke of any stripe is obviously a no (please ignore the Coke Zero on my coffee table, I "needed" the bubbles for a sore throat *cough*) :) However, you can drink A&W Rootbeer (we will accept sponsorship deals!!) because it is phosphorus-free.  Be warned, though, rootbeer is HIGH in calories.

I'm looking forward to Rachael's next post about crazy dialysis questions. It should be funny!

RachelT

Brace yourself. It's about to get REALLY boring up in here.

Okay.  Here is the deal.  Labs are part of the process of doing PD.  We can't ignore them.  (Yes, sometimes I only pretend to care about them.  But I know they matter.)

I'll give you a future post answering some of the oddball questions I had when I started doing PD in exchange for the chance to put some lab information in here.  Deal?

As a PD patient, I have my labs drawn every month.  That's the fussy part of the system in the US.  My personal opinion is that the system is completely jacked up.  I am smart, able to care for myself, and compliant with my treatment.  Why they need to see me twice a month (clinic and Nephrologist) is beyond me and very inconvenient.  If I choose a dialysis modality that encourages independence, why wouldn't you just give me a slip to see a phlebotomist every month and just call me if there's a concern?  Honest thought:  The PD system I have in the US sometimes treats me like I can't be trusted.  And it's annoying.

However, it is infinitely better than hemodialysis and multi-week clinic visits.  Believe that.

Moving on.  Labs are related to what I eat, how well my dialysis works, and what medications I take.  As you know, kidneys are miraculous filters and keep our bodies clean.  Unless you are me.  And they pooped out (so to speak) a long time ago.  Now I have PD, dietary limitations, and medications to help my body function as well as it can.  Maybe not as perfectly as a body with A+ kidneys, but pretty darn good.

I will give you an overview of the main laboratory concerns for PD patients.  Your mileage may vary - this is what I get tested for every month.  I am providing the "goal numbers."  These are the lab values the nurses and docs would like to see each month.  If my numbers are significantly higher or lower, we talk about what needs to be done to adjust them.  Medication or diet.  Possibly my PD prescription.

1.  Albumin.  This is a count of my protein stores.  Having plenty of protein means you can heal more easily, prevent infections, and stay strong and energized.  (Goal number:  3.5 or greater)

2.  Potassium.  Keeps the heart and nerves working well.  Fruits and veggies help with this.  (Goal number:  3.5 to 5.5)

3.  Calcium Corrected.  Healthy bones and heart need calcium.  But not too much.  (Goal number:  8.4 to 10.2)

4.  Phosphorus.  This is the tricky one.  Because phosphorus is found in EVERYTHING DELICIOUS.  The problem with dialysis patients is that we store phosphorus.  And too much can cause bone disease, deposits in the heart, lungs, eyes, joints, and blood vessels.  This is the lab value that most dialysis patients will be reprimanded about.  Because, seriously, it's all about yummy foods.  We are told to avoid dairy, beans, many starches, packaged foods like pancakes mix and biscuits, soda, nuts and seeds, chocolate, peanut butter, pizza... etc.  So, do we?  NO.  We take a medication called "binders" to help grab on to the phosphorus and move it out of our bodies through the bowels.  Binders could be an over-the-counter supplement or a prescription pill.  Some folks need a little - some need a lot.  It kind of depends on your diet.   (Goal number:  3.0 to 5.5)

5.  PTH Intact.  Parathyroid hormone.  If it is high, it can cause bone and heart disease.  This works in direct relation to phosphorus.  When your phosphorus numbers are good, the PTH tends to fall into line.  You may need oral active Vitamin D to help this process along.  (Goal numbers:  150 to 600)

6.  Hemoglobin.  Red blood cell count.  If low, you might need a medication such as Epogen (epoetin alfa).  Regular injections of this will stimulate red cell growth.  I've been on it when I need it, off it when I don't.  (Goal number:  10 to 12)

7.  KT/V Total PD.  This is a measure of the adequacy of your PD.  It shows how well your body is being cleaned by dialysis.  If you have adequate dialysis, you will probably feel better, eat better, have fewer hospitalizations and illnesses, and could potentially live longer.  This is tested in the US every three months.  (Goal number:  1.7 or higher)


There are other issues, such as iron and cholesterol, but these are also routinely addressed with a primary care physician.

So, what does all this mean?  Whatever you want it to.  When you start PD, you'll get a report with these lab items.  You can talk to your nurse/doc about the values.  They'll probably tell you the basics about how to get them in line if you are high or low on the values.  And you can decide if and how you want to deal with them.

Your numbers are a little off here and there?  Not necessarily life or death.  Consistently, seriously, off labs?  You might think about what you eat and how you take your medication.  Everyone is different.  And labs are not something to obsess over.  The goal is to feel as good as you can each day.  Do your best.  Do what you can.  And live your life.

Some people find that they enjoy changing their diets drastically to avoid the need for medication.  Some people really aren't bothered by the lab values and live the way they want to.  Your PD support staff will tell you all the possibilities and all the possible solutions regarding lab issues.  They won't take over your life - they are a guide for better living.  It is up to you what you want to do about them.  

I'm not saying you should eat with abandon and not take your medications.  I'm saying that you can use common sense and the best of your abilities to find a comfort zone with labs that works for you.  My personal experience?  I like good lab values.  I gave up dairy.  I take my binders.  I do my best.  But not every single day.  I am a human being and, therefore, eat pizza once in a while.  My lab values and numbers fluctuate every month.  Because I am alive.  And things change.  I change.  So I just do my best and am glad to have a chance to do my dialysis the way I want to and try to keep moving forward.

Labs are nothing to be scared of.  They're just boring. 

ClinicVisit - Canadian Edition

Clinic visits are a regular part of the routine, much like regular blood work. When I first started on PD, I would have clinic visits every 3 months and the routine was very similar to what Rachael described here: Rachael M's clinic visit.  However, because I am a healthy dialysis patient, my nephrologist switched me to every 6 months (ok, HE didn't switch me, I negotiated for that) :) And right now I'm almost at the 9 month point since my last appointment (scheduling conflicts, bad patient, etc). I also only go in roughly every 3 months for lab work.  Mainly because I despise having my blood drawn.

So, I'm going to do a brief comparison of clinic visits.

1. Arrive at clinic, refuse to step on the scale and give them my weight from home (which I will possibly lie about.  I used to lie all the time, but now I don't - mainly because I lost a bunch of weight and am now OK with the truth) :)

2. PD nurse checks blood pressure while inside I freak out because guaranteed it's going to be elevated. Play images of Hawaii in my head to force myself to relax.

3. Go through chart with PD nurse, making any updates on medications, or noting any questions I have. I check through my labs with the nurse to see if anything is of concern. Usually told to increase my protein intake and that my phosphorus levels need to come down. Of course they do, I eat sunflower seeds all the time. I know why the phosphorus is high.

3.5. Refuse to see the dietician. I know what my food issues are. I know what I need to or should change.

4. Because I go in every 6 months, it'll be time for a catheter change.  This is NOT the whole catheter - just so you don't think that you need surgery every six months! You don't. They change the tube at the end. The PD nurse will do this while we wait for the nephrologist to show up. It takes about 15 minutes - the nurse will wash and glove up and then take off the dressing over the catheter (ouch), switch out the tubing, and redo the dressing. I leave them to it and then change the dressing as soon as I get home because it's never done the way I like it. But that's OK, because they can't learn every patient's personal preferences for how their dressing is done.

5. Wait for the doctor.

6. Still waiting.

7. My rock star doctor hustles in - he's the only nephrologist in the whole region - so the man is BUSY. And he is a bit of a rock star. He's got spiky hair, he's in a rock band, he's overall an awesome guy.

8. We argue over my blood pressure. I refuse to change any or increase any medications (if I can do it through diet, I'll try - HAHAHAHHAHAHAHA). We talk AGAIN about why I don't want a transplant. He asks to see me again in 3 months, I say 9, we agree on 6 and he goes on his merry way, telling me to take care.

9. The PD nurse comes back in and checks the instructions and we book an appointment for 6 months down the road. She hands me a bag with any supplies I've requested that Baxter doesn't supply, and I leave.

The whole appointment takes about an hour. I'm not a non-compliant patient, but I believe very much in being the one in control. I know what my lab values should be and what they all mean. I am not hesitant in saying no to medication. I do not lie to my doctor, but I am the one living with this. He can understand to a point, but he would also like to see me with a transplant. To me, right now, a transplant doesn't make sense. Or rather, the benefits do not outweigh the risks. When I get to that point, then I will move forward with a transplant, but I'm not there yet.

I think that'll be a good future topic: the benefits of PD versus hemodialysis and transplant.

Any questions or comments, feel free!

RachelT

The Kidney Doc

My Nephrologist.

The man with the plan.

My insurance requires me to see him once a month.  Our visits are usually short and sweet.  He oversees my PD care and is the person who coordinated my initial foray into dialysis.

When someone is diagnosed with kidney failure, there are often other, related issues to deal with.  Maybe depression, poor appetite, fatigue, blood pressure control issues.  Any number of things can become problems.  The Nephrologist will help you with many of these things.  A PD clinic nurse is usually a direct line to a Nephrologist, so there are a couple of ways to get help if needed.

One thing that really matters to me about my Nephrologist is that he is compassionate.  He may not have personal experience with being a PD patient, but if his goal is to help me live as well as I can, then we are on the same page.  I need someone who looks at me when I talk.  And hears exactly what I am saying.  Someone who will take a moment to come up with a solution to a problem.  Someone who wants the best for me.

My Nephrologist is also willing to compromise with me regarding my care and treatment.  He doesn't rush to judgement about changing medications or dosage when I tell him I might want to try adjusting things with diet.  He's willing to let me have some control. 

Today was my appointment with the kidney doc.  Here's what happened:

Checked in at 9:35AM.  Nurse took readings on my weight, blood pressure, temperature and pulse.  Asked if there were any treatment changes.  There were none. 

Doc met with me at 9:45AM.  Listened to my heart, checked my ankles for any water retention.  Asked some general health questions.  We talked about my PD schedule and prescription.  I told him I had increased the amount of water I was drinking and that my cycler machine was particularly efficient because of this.  PD was going well.  He was happy with my weight and blood pressure.  We talked about the needed increase in protein for my diet. 

Today there were no major concerns.  In the past, if I had a problem with the function of my cycler machine or was worried about my diet, he would address these issues.  We would talk about possible solutions.

He said he was happy with how things were looking and said to call if anything came up before I see him again.  And that was it.

His office is responsive to telephone calls.  I might need to clarify a prescription or ask about changing a dosage.  He reviews my medication schedule and does what needs to be done.

My Nephrologist is also the person who helps coordinate any hospitalizations related to kidney issues.  Before I actually started on PD, I was hospitalized a couple of times.  He was there to confer with hospital staff about my case. 

This is the doctor who will oversee your PD plan.  It's important that you are comfortable asking questions and getting information.  PD is all about self-care.  Having someone who gives you the tools you need to do PD and then supports you as you go along is critical.  Don't be afraid to ask anything and everything.  The longer I have done PD, the more I learn about what I need and what I want.  Having a Nephrologist in my corner to keep me going is one less thing to worry about.

Since my Nephrologist and I spend a lot of time talking about labs, it's probably time to start explaining some of that.  Next post!

Questions?  Please ask!

- Rachael M.

TFD

This Fucking Disease (hereafter referred to as TFD so people don't think I curse like a sailor).

Normally I deal with all this kidney stuff pretty calmly. I doesn't really bother me to be on dialysis and to make choices based on the good of my health. People should do that anyway.

However, sometimes it just really gets to me. Like on Friday. I picked up a part-time job for over the summer as I'm not teaching until at least the end of June, if not longer. Friday was the orientation for the new store opening.  OF COURSE after standing under the hot lights, my blood pressure dropped. I felt nauseated, overheated, and lightheaded. Crap. When I'm moving around, I'm fine. As soon as I have to stand still, especially when it's hot and crowded, then I don't do so well. I ended up having to leave after the first hour of orientation. Fortunately the manager was fantastic and modified my future shifts (about 2/week), so I'm only doing 3-4 hours. She said I won't have to stand at the till, or if I do, it won't be for long periods of time.

A lot of dialysis patients don't work because they are generally too unwell to work and those who do hemodialysis have fairly low energy.  PD patients usually feel a lot healthier than hemo patients because it's done more often and is gentler on the body.
While I was on hemodialysis, I was working as a unit clerk in a busy unit in the hospital here. I switched to PD 9 months after starting on hemodialysis. Four years later I moved over to teaching ESL and I worked 5-6 hours a day. That was the perfect schedule for me because I could nap in the afternoon after work if I felt run down.  I have a pretty high energy level compared to a lot of dialysis patients, but I know it still affects me.

Anyway, Friday made me feel like TFD was a little frustrating.  And I want to let you know that days like that will happen. You will get frustrated. You will feel like your body has betrayed or is betraying you. You will wonder how you're going to make it through each day.

I don't have the perfect answer because that is something you will have to define for yourself. For me, it is work. I love my students, I love being around people. My friends and my family are important to me. I like to travel - even if I have limited myself to road trips. I love to learn and am always pursuing further education.
I think I have a purpose to help other people - to learn, to adapt, to encourage them in some way.

I hope you find your answers when you have a TFD day. I hope that this blog will help you and that you will see that you are not alone on your journey!

RT

Today's Clinic Visit

Before I tell you all about today's visit to the PD clinic, I want to make sure our readers understand some differences between my posts and Rachel's posts.  I live in the US.  Rachel lives in Canada.  Because of the different types of insurance we have in our respective countries, our procedures will not be the same.  What I have to do will not always be the same as what Rachel has to do.  My US insurance requires certain things in order to comply with Medicare.  The frequency of clinic visits, the lab-drawing schedule, the nephrology appointments and other specifics will probably be different.  But the basics and what actually happens during these procedures will be similar.

Just like any two people who do PD, our stories will have similarities, but won't be exactly the same.  What we hope to show you are examples of how it works for each of us.  And to let you know that your experience might not be just like ours - but you'll have a better idea of what to expect.

On with the post!

Today was what I call a Regular Clinic Visit.  Once a month, I go to the DaVita Dialysis Clinic in town.  On a regular visit, the basics are covered.  A blood draw, a short educational segment (a quiz or a demonstration), review of the previous month's labs, medication review, and an assessment of my general health.  I will be asked if I have any problems or concerns.

Every three months I have what I call a Big Clinic Visit.  During a big visit, I will bring in a sample of the dialysis drain fluid and a sample of my urine.  More tests will be done to determine whether my dialysis prescription (fluid strength, amount, and frequency) is adequate to keep me healthy.  Every six months is the Really Big Clinic Visit.  During that visit, I will have my catheter tubing changed and will meet with the dietician and social worker to discuss any issues I may be having.

Today's regular visit was quick and easy.  Here is an overview:

1.  Arrive at clinic at 1:30pm.  Step on scale, record weight.  Go with PD nurse into clinic office.

2.  Clinic office has a reclining chair, sink, various supplies, IV poles, and pretty much everything associated with PD.  There is a cycler machine set up in there that is used for training purposes.  Reclining chair has been wiped down with sanitizer and covered with clean paper.  It's actually pretty comfy.

2.  PD nurse takes my temperature, blood pressure, and pulse.  Then she listens to my heart - front and back.  Regular breaths and deep breaths.  I give her a copy of the records I keep every day.  (Each morning, I record data from the cycler and information such as my blood pressure and weight.  I note how much fluid was removed during the night, how long the average cycle was, and how much fluid drained initially when I first connected.  The PD nurse collects this every month and I keep records every single day.)

3.  PD nurse reviews last month's labs.  Addresses any concerns.  Today she advised me to increase the amount of protein in my diet.  PD patients lose protein faster than non-PD folks because we are always pulling the good with the bad from our bodies with dialysis.  We discussed my medications (no changes).  We went over my general health, making sure I wasn't showing signs of not getting enough dialysis.  If my dialysis was not sufficient, I would possibly have itchy skin, signs of swelling and water retention.  I don't, so everything was fine.

4.  We do a short educational segment.  She tells me the latest information about a topic related to PD.  Today it was about travel.  I learned what I needed to do in order to travel on PD - what the new requirements are regarding making sure my supplies get to where I'm going.  Then I took a little quiz about it.

5.  PD nurse showed me pictures of her daughter's graduation.  We oohed and aahed about them for a while.  I have had the same PD nurse for about 7 years, so we know a bit about each other and our families.

6.  I was reclined in the chair and the PD nurse took some blood from my right arm.  This will be used to check various lab levels.  I think we (Rachel and I) will post in more detail about labs at another time.  But they're used to see if our medications need adjusting or if our diets are negatively affecting our health. 

7.  The PD nurse and I walked into her administrative office and we scheduled an appointment for next month.  Next month is another Regular Clinic Visit. 

8.  She gave me a hug and I left the clinic at about 2pm.

So, the whole appointment took about half an hour.  We covered everything we needed to cover and had a few minutes to catch up on personal stuff.  The office is friendly, clean, and private.  There are no other PD patients in the room with me during my appointment.  It is one-on-one with the PD nurse.  She hands me a few supplies when I leave.  Things like hand sanitizer, syringes, record-keeping forms.  Whatever I might need. 

And that's it.  Until next month!

Again, what is required by my insurance in the US isn't the same as in Canada.  So, that's my particular experience with a regular visit to the PD clinic.  Questions?  Ask away!

- Rachael M.

Travel

First up, I want to concur with what Rachael said about supplies. It takes some doing to get yourself organized, but once you work it out, it's easy. I live in a 3-bedroom house, so one bedroom is for supplies and storage. I keep one month of supplies on hand, although this is a recent development for me. For some reason, Baxter kept sending me WAY too many  supplies, so I finally did a proper count and have brought my ordering under control.



Now to the purpose of this post:  travel. Travelling while on dialysis SUCKS. I will be upfront and honest about that. Now, Baxter does its best to make travelling easy. They will deliver your solutions for you (and in Canada it doesn't cost anything, even if you travel internationally), but you have to carry your cassettes, drain bags, and other paraphernalia with you. I wish Baxter would also supply this material, but as of right now they don't. I'm not sure why.

The biggest problem is the machine. It's heavy and awkward.  A dialysis patient is not supposed to lift anything over 10-15 pounds. The machine weighs something like 35 pounds. Something doesn't add up. I have made several (ok, many) complaints to Baxter about this. With all the technology out there, you'd think a lighter, more portable machine would have been developed by now. It has not.

If the machine weren't so unwieldy, I would definitely travel internationally. However, over the past 8 years I have limited myself to road trips because they are easier. I can load my machine and supplies for a few days into my car and go.  I just spent 4 days in Edmonton and had my supplies delivered. That was so handy! The boxes of supplies aren't light either, so whenever you can save yourself carrying that extra weight, do.

Baxter (or your dialysis provider) does need advance notice that you are travelling so they can arrange for shipment of your supplies.  They recommend 2-3 weeks for domestic travel and 3-6 months for international travel.  You will need all addresses, phone numbers, and contact information of where you're staying and who they're delivering to.

Depending on your health, your clinic may need to be aware too.  I recommend travelling with a list of all your medications and if you're crossing the border, a note from your doctor saying that the supplies in your vehicle are necessary for your life.  I haven't had any problems with border crossings, but better to be safe than have some over-eager border guard slitting open your dialysis bags and draining them onto the ground.

The thought of that makes me shudder!

The idea of making my way through an airport with my dialysis machine fills me with a little bit of horror.  There is also the issue of setting up hotel stays and having supplies delivered to hotels. They often aren't aware of what to do with the supplies and every time I've stayed in a hotel and made special requests, they've gotten it wrong. That is frustrating. It definitely makes you feel like a person with a disability when snafu's like that happen.

My biggest problem with travel is me. I hate to feel like I'm imposing on people. I need to have space for my supplies and for my machine.  I also don't want people to feel sorry for me.  After all, it is this machine that keeps me alive and well.  I understand that it's my issue and it's something I'm trying to get over. Not easy.

This is a great blog about a guy who travelled Europe while on dialysis:  http://travellingwithdialysis.wordpress.com/ Give it a read and you'll see that yes, travel is possible. It just takes thought and preparation and a positive attitude!

RT