Dialysis Daze

https://www.sensipar.com/

Home Sensipar® (cinacalcet) is indicated for the treatment of secondary hyperparathyroidism (HPT) in adult patients with chronic kidney disease (CKD) on dialysis.

I want to share with you what I do to make it through the “bad” days. There is one thing that I have learned over the years, I CANNOT change him, he is going to do whatever he does no matter what I say or do. I can ONLY control myself, my reactions, and my attitude.

First some background information:
I’m 58 my husband is 70. I work full time, 8 to 5 Monday thru Saturday. He has been doing in center dialysis for 5 years. He has other health issues….January 2000 he had a quintuple heart bypass….May 2011 he had a massive stroke….February 2012 he had pulmonary actinomycosis requiring a PICC line. 2020 Covid and 2022 Hypoxia. The first 3 years of dialysis seemed to go fine, but since things have gone downhill. I’ve seen a change in his personality and I can say it’s not fun. I look forward to the “good” days but they are coming far and few between. This is how I used to cope.

In order to cope with the “bad” days and keep my sanity, I’ve learned to make it a game.

Rule #1 – determine his mood and dress him accordingly.
Rule #2 – do not speak unless spoken to and then only answer with “ok”

First thing in the morning after the alarm goes off, I determine his mood:
me: Mornin’ Babe
him: Mornin’ Babe, how was your night
This tells me it’s going to be a good day!

me: Mornin’ Babe
him: *moan* *groan* I didn’t sleep at all, my foot hurts, my finger hurts, etc.
This tells me it’s going to be a bad day.
Every morning when I’m getting dressed for work he will say “Toss me a shirt”. We have done this our entire married life. On the bad days, I toss him a red shirt. This signifies to me WARNING! BEWARE! STOP! It also is in hopes that a random bull might run through the house and think he is a target and charge him, but so far that hasn’t happened. He has no idea that I do this, to him I’m just tossing him a random shirt.

Once dressed we head into the kitchen to prepare breakfast and lunch. We make our own, we always have and it works for us. He’s still moaning and complaining, I remain silent so as to not poke the bear. Let’s say he complains about his stomach bothering him. My normal response would be to ask him if he was going to call his doctor about it and he would then snap at me and yell at me. As I stand there ready to respond I see that red shirt and remind myself to just say “ok”. He has no response to that. It’s pretty early in the day for my first “ok”. I like to count how many times I say “ok” throughout the day, plus I play a game to see what’s the earliest time I have to use it. Sometimes I don’t even make it out of bed.

During the work day I will get random text throughout the day from him whining and complaining. My response “ok”.

Now it’s time to go home. I mentally prepare myself the whole drive home. I would love to walk in the house and have him give me a big hug and kiss and ask me how my day was, but I know that’s not going to happen (it does happen on the good days). There are even degrees of badness on the bad days. If the front door is closed then it’s a really bad day and he didn’t even want to get up out of his chair to open the door for me. If the door is open but he’s sitting in his chair it’s not as bad, but still bad. If he is standing at the door it’s just a semi-bad day, but still bad.

All three scenarios I am greeted with the same thing….moaning and groaning and complaining about how bad his day has been. My response….”ok”. I look around and see that the bull has visited the house and left a mess in its trail, but my husband is sitting there unscathed, I need to have a talk with this bull.

Throughout the evening we eat dinner and watch some television, just relaxing (him moaning, me ignoring him) until he finally falls asleep in his chair. Oh the joy of that snore. I now take the television remote and turn on a good chick flick or grab a good book and enjoy the peace and quiet that I will have for an hour or two.

Bedtime:
me: Goodnight Babe
him: *groan*
Tomorrow will be a better day!

By the way, today he is wearing a blue shirt 😊

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https://healthfully.com/signs-and-symptoms-of-dying-with-renal-failure-3539313.html

Healthfully Find your way to better health.

Going through all the same things and it helps to know others are as well. In my research I found that the toxins from renal failure affect their brains/minds. Likely their lower oxygen levels and other conditions they suffer too. My husband who was always quite brilliant is now having trouble working our tv remote and his cell phone. But his sarcasm is still intact. This may sound odd but sometimes I think they are jealous that we are not as sick as they are. Trying to remember that tomorrow is another day and hopefully brighter.

Some days the bleeding doesn't stop after pulling the needles. This stays in until late tomorrow.

I love Erma Bombeck. She was
diagnosed with polycystic kidney
disease at age 20. She survived
breast cancer and dialysis and in
1996 had a kidney transplant but died of complications from the surgery 19 days later.

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When an individual is diagnosed with kidney failure their life is changed forever. This can bring on a rollercoaster of emotions and questions. Kidney failure affects the entire family and changes the dynamics of what was once considered a normal life.

Join is this Wednesday July 21 at 8pm EST for a Zoom Symposium on the subject of Kidney failure & Grief.

Kathy Cherven, RN, LCPC, Grief & Loss Counselor, will be joining us as a guest speaker to discuss grief experienced by patients, and their care-partners. This event is open to everyone.

Zoom Meet Link
https://us02web.zoom.us/j/88517658254

Sat down to eat breakfast and flipped on the TV. Watching SVU. It's all about CKD and dialysis. Weird. But I'm watching. It's about mortality.

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Scary day. Got told all this when he got home. All alarms went off...BP cratered to below 40/30. Started running fluids until he regained consciousness. Took an hour and a half. When he seemed somewhat cognizant BP was at 47/38. Took 5 pills of Medorine to get BP to rise. Left the center with BP 112/62. Got home took it 99/55. He became very tearful. States he feels like he almost died today. At least he's hungry now...nausea stopped.

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This ad just popped up on my Facebook newsfeed. In case it’s helpful to anyone, thought I would share. The pickle juice works even better for cramps.

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