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