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Friday, February 12, 2016

The "Kidney Disease is Not For the Faint of Heart", edition.

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 Rescititate 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. 


  1. Patrice I cannot thank you enough for the post. Those who are blessed enough to not have chronic health challenges do not understand what it's like to have these challenges. So far I don't have dialysis and ERD but I have other numerous chronic health challenges. You have been a godsend and an inspiration with this blog. There are SO many days that I'm either too tired or in way too much pain to keep plans from time to time or people may not hear from me for stretches at a time. Sometimes I feel guilty because I can hope that people truly understand that it cannot be helped. I get frustrated with myself sometimes but I am still learning to go easy on myself. I also take pleasure and appreciate some of the smallest things in life that can go unnoticed under normal circumstances. I thank God for each and every minute of my life. At the end of the day I am still incredibly blessed. Thank you for your inspiration my forever sisters friend. I love you. Val