Kidney Disease is Not For the Faint of Heart

This blog post was made by Patrice Perry Fields on February 16th, 2017.
Kidney Disease is Not For the Faint of Heart
Reposted with permission from patsdialysis.blogspot.com.

Good Friday morning!  Just being pensive about kidney disease today. I belong to several groups on Facebook. At least 4-5 dialysis groups, with 2-3 specific to home treatments. Anyway, the discussions ebb and flow. Sometimes it's quiet and sometimes there is a lot of activity. Right now they all seem to be on fire. The founder of one group is headed for hospice. He has been told he has 6 months. He's 39. His mother has been taking care him for the last 15 months as his condition has deteriorated.  She's been told by the doctors that there is no more they can do. Time to follow the Advance Directive (do you have one?) and the Do Not Resuscitate orders.  

People don't want to go to treatment.  Some for the day, or some just want to quit. That comes up often. I understand and don't judge. There have been people who just gave up and went to hospice and we never hear from them again. Members get upset and try to talk the person out of their decision. My take is, I really don't know what that person is going through. I clearly have bad days and some nights I hope I don't wake up. We also get daily updates on partners and children dying. And people who have left for the center via EMS, never to return. Death is constant and unrelenting. As is suffering on scales that seems incomprehensible. 

There are many discussions and arguments about the different modalities...home hemodialysis, incenter hemodialysis, peritoneal dialysis and nocturnal dialysis. Oh yeah. I haven't talked about nocturnal have I?  I won't go into detail right now, but yeah, it's nightly. Again, people get passionate about their modalities. I try hard to not judge people because they are afraid. I got over my fear and squeamishness because I knew home hemo is better for me. But I understand the hesitation of others. 

Someone mentioned the dirty looks they get when the park in a handicap space or when they need to use the electric carts in a store. Most of us don't look handicapped. But trust me. We get tired. We are weak. We try. People also post some pretty graphic scars and procedures. Or lots of bloody photos. And a few people get upset. But here's the thing: the photos are a part of dialysis. We have some pretty gnarly surgeries. And can have some pretty ugly side effects. Our bodies get ravaged. Needle tracks and aneurysms. And the photos may be hard to look at, but it's part of the package. Sorry. Lots of blood doesn't faze me. And the other day when Brian forgot to clamp one of my lines, we had a fine bloody mess. Eh. It happens. 

I'm not sure Brian is used to seeing me pick the scabs off my buttonholes. Or watching me insert the needles. And he doesn't flinch when I have trouble finding the track and it looks like I'm stabbing myself haphazardly. It's just part of the process. And clearly not for the faint of heart. My virtual warriors, we support each other. When no one else understands what we're going through, we have each other.  And 2 of the groups have over 10,000 members. That a lot of dialysis. 

So it's Valentines Day weekend. We're going out for dinner on Saturday, my night off from home hemo. That's about it. The weather is gorgeous. Unseasonably warm. :-)   People are wearing shorts. This. This is why I moved out here. Love. It!!!!   Lol. Have a great weekend!!!  Oh and let me state...I'm doing ok today.  Really.  Just being thoughtful about dialysis and what others are experiencing. We really don't know what others are going through. Please don't judge. 

Comments

  • Judy

    Feb 23, 12:33 AM

    Thank you, it is good for lay persons to read what it is like living daily with kidney failure. Your words are spot on. I have been doing HHD for 11 years. We travel, we do our best to enjoy living, even when we hit a rough spot... there will come a time for me to stop treating and that is ok. Sending good thoughts to all blood brothers and sisters❤

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  • Lisa Simpson

    Feb 22, 3:55 PM

    Such wisdom in your post. I had a nurse grill me about why I chose HHD instead of PD. Inappropriate. It's a very personal decision. I try not judge others either. I started HHD about eight months ago and I was so afraid of needles and blood. And I had my share of forgetting to clamp at crucial moments in the beginning and it got messy. Now I'm like "blood schmood." I have come so far. I have friends and family members say to me "I could never do it, I would rather die." Really?!? I tell them yes, you would, you would just put one foot in front of the other like we do and keep on going. But I have known others, elderly, who decided enough was enough. I understand that too. No judgment.

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  • Sunny

    Feb 21, 8:35 PM

    Your blog is thoughtful and truthful, but my thoughts are that it doesn't pay to dwell on all the "downsides" of kidney failure and dialysis. Even if it is most difficult, a patient needs to consider the good fortune and gift of being able to have treatments which prolong life and be thankful, not morose.

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  • Barbara A. Haslip

    Feb 21, 9:47 AM

    Nice and thoughtful. We can not judge! Hope all continues to be well with you!

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    • Patrice

      Feb 23, 8:42 AM

      Thanks Barbara. You and others were my intro to dialysis and set the standard. As I've gone through several experiences, you set the bar pretty high.

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  • Jeff Stumpe

    Feb 17, 10:30 AM

    Patrice: I appreciate the candor in your post.

    I've been conducting HHD for a mere 4-1/2 years, and in spite of having a pretty dialed in process (I've been a process improvement professional for decades), there are the occasional Tx gaffers.

    Just last night, while cannulating and prepping the first needle inserted for a mid-month lab draw, I neglected to clamp the tube before removing the draw back cap to insert the vacutainer.

    Since I still had the cap in my hand, I screwed it back on instead of dropping it and reclamping the tube permitting a good amount of my blood to pour.

    I had been chatting with my dear spouse/care partner (she's usually out of the room during my Tx start up, and not distracting me) causing me to take my "eye off the ball".

    We laughed as I announced, "Clean up in Aisle 9!" just as you made me laugh about your recent bloody mess.

    That's why I "work" on an over the bed hospital table with a chux picnic table clamped to it - easy mess clean up/cover up and later disposal.

    The best thing I've found about HHD is that you can follow that messed up Tx with another, and like the Bob Seeger and Silver Bullet Band lyric from "Roll Me
    Away":
    "And as the sunset faded
    I spoke to the faintest first starlight
    And I said next time
    Next time
    We'll get it right"

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  • Susan Emeny

    Feb 17, 8:29 AM

    You nailed it Patrice!

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  • Tyler Molzahn

    Feb 16, 5:06 PM

    You hit the nail on the head , i am the caregiver and nurse and husband , and you are right .

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  • Jennifer C

    Feb 16, 4:19 PM

    Pat: Great post! Thank you putting this in writing. I rarely mentioned dialysis in college and through 3 decades of work. I kept telling myself, just do what it takes and keep going. The same thing I do today. Dialysis is a marathon, not a sprint and definitely not for the faint of heart.

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