I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: BobN on October 10, 2016, 11:14:10 AM
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Bob Here
Home dialysis is a very lonely activity, and you know what?
Most home patients wouldn't have it any other way.
If I may be so bold as to project my personal feelings on all my brothers and sisters doing home treatments (don't worry, nothing dirty), I daresay most folks would just as soon not subject our loved ones, or anybody else for that matter, to the monotonous, tedious, humdrum, and frequently nauseating routines in which we partake in order to avoid an early membership in that big kidney-failure group in the sky.
And, more times than not, our isolationist desire works out just fine.
And then (drumroll, please), company arrives.
Now, don't get me wrong, I normally welcome visitors with open arms, bandages and all. Heck, we live at the beach. If we didn't want company, we would have moved to some God-forsaken adobe hut on the plains of Texas.
I hope I'm not insulting any of my nomad-leaning friends, but at one point in our lives, we were regularly making the six-hour drive between Dallas and Lubbock when our son was attending Texas Tech.
And, I'm here to tell you, you ain't seen isolated 'til you've driven between those two metropolitan areas, where your idea of company is a tumbleweed blowing down the dirt road, and your options for fine dining start and stop at the local Dairy Queen.
Yep, I'm pretty sure we wouldn't have to fend off too many unwanted drop-ins living out in those boonies.
But nope, we live at the shore and there's nothing to keep friends and family from visiting other than my well-known predilection for being permanently parked on the anti-social side of the desire for companionship.
It's still not unusual for me to plot devious ways to get out of pending social functions or invitations. Whenever I come up with a new or slightly used excuse, all of which are at various levels on the "lame scale," the wife will almost always give me her infamous, "what-could-I-have-been-thinking" look before walking away in disgust.
However, the lure of the ocean is strong enough for people in the know to put up with my idiosyncrasies and occasionally off-putting personality and set up temporary residence in our humble abode.
Which brings up an interesting juxtaposition between guests and The Big D, home edition.
Long-time dialysis patients can become somewhat taciturn about our regimen, even when something goes wrong.
"Uh Bob?"
"Huh?"
"You've got blood running down your arm onto the floor."
"Yeah yeah. I'll clean it up later."
"Well...do you want me to..."
"Hey! Do you mind? I'm at a really important part of my book."
However, to anyone who hasn't gone through a few thousand treatments, the sights and sounds of dialysis can be a bit disquieting.
Not long ago, we took the plunge (That's a pun. You'll get it later.) and decided to partake of the domestic form of torture known as getting one's bathroom remodeled. (Get it? Bathroom...plunge?)
And let me tell you, waterboarding has nothing on this exercise.
I wrote about the experience previously, about getting to a point where I had to lug my machine to our basement because our normal setup is right outside said bathroom. I somehow managed to avoid hernia surgery and moved the operation back upstairs when our contractor was adding some finishing touches.
He was an affable young man and his curiosity was peaked by our home process, and he decided he'd like to watch as we finished up one of our sessions.
I tried to talk some sense into the boy, but he wouldn't hear it.
Everything was humming along smoothly and I even took an unusually active role in describing what we were doing every step along the way.
The wife was giving me a strange look.
"What?" I asked her.
"Since when did you become such a tour guide?" she asked. "Normally, if I get you to string more than two sentences together at once, it's like a new record."
The contractor snorted, but I ignored the barb and went on.
"Now it's time to take the needles out," I said.
I noticed the guy took a couple of steps back.
"You really don't have to stay if you don't want to," I said.
"Uh, no. No. Go ahead. It's no problem," he said.
I nodded, but, being a guy and all, I knew what was happening.
Boys are taught at a young age that if you retreat from something scary, you acquire a permanent membership in the "candyass club." If you're going to chicken out for whatever reason, you just hope and pray that there's nobody around to see it happen. Especially, let's be honest, a female of the species.
I tried again to break through the "macho barrier."
"Look, seriously, this isn't for everybody. We won't think any less of you if you don't want to watch."
"No no. Go ahead," he said, his face a bit ashen.
Now, I won't get too graphic, but it's just about impossible to take two one-inch, fifteen gauge needles out of a person's arm without there being a little, shall we call it, spillage?
Of course pressure is applied instantly to keep the "spillage" from becoming a deluge.
So, I was still a bit doubtful, but without any alternative, out came the needles.
"Jumping Jehoshaphat!" yelled the contractor.
"You okay?" I asked.
"Uh, oh...yeah sure. Well, I've got another appointment...so anyway...thanks for the demo...uh...see ya..."
At that, he headed down the stairs and out the door like the house was on fire.
The wife and I just looked at each other.
"Well, I tried to warn him," I said.
She just shook her head. Fortunately, she spared me her description of how the male gentalia outweighed their brains by a double-digit multiple.
But I knew that's what she was thinking.
Anyway, this past summer, after my favorite baseball team won an important game, the wife, all flowers and roses, came prancing in and informed me that she had invited an old friend from work and her spouse to come spend the weekend at the beach.
See, she does this strategically after something positive happens in sports, knowing how that tends to put me in a positive frame of mind, and keeping her from having to remove all the sharp objects from the house.
I just looked at her, my good mood draining out of me fast.
"Oh? And where, pray tell, will they be staying?" I asked, although I already knew the answer.
"Here, of course."
"Ah. Of course. Well, you know I just might..."
"No. You're not going to a hotel."
So, that was the end of that.
Now, I knew these folks too, and the visit started out pretty well. They came in on a Friday after we had already treated, and I normally take Saturdays off.
But on Sunday, our friends dropped the bombshell that they would like to watch an entire dialysis treatment, soup-to-nuts.
"Why would you want to do that?" I asked. "Don't you have enough giving you nightmares these days? Think about Donald Trump or Hillary Clinton being president."
No, once again, they insisted. They wanted to see what this whole dialysis mishegoss was all about.
Again, outside of shoving them out the door and changing the locks, we didn't have much of a choice.
So, it finally came time to start setting up. Our guests came upstairs.
Donna's friend said, "Now I want you guys to just act normal, like we're not even here."
I said, "Right. Now put this mask on."
"What? A surgical mask? Why? Oh never mind. Of course."
I handed one to her spouse, who looked like he'd rather be having a prostate exam than be partaking in this insanity.
"You too," I said.
"When's the last time you washed your hands?" I asked the woman.
"Uh, I...I don't really remember..."
"Go do it now please. Use the anti-bacterial soap and dry off with a paper towel."
She went hesitantly into our newly remodeled bathroom.
"You're next," I said to the guy. He seemed like he was giving serious consideration to bailing.
"Bob?" the woman called out from the loo. "You do know that when we said we wanted to watch, it didn't mean we wanted to participate. Right?"
The wife stepped in. "He's just being his usual curmudgeon self," she said. "Technically, yes, visitors are supposed to wash their hands and wear masks, but we're not like saying you guys aren't clean or anything."
She gave me a withering look. So I figured I'd: 1. Stop giving her friends a hard time, and 2. Watch closely to be sure she didn't slip a little bleach into my lines "by accident."
But, we got through the treatment without any fatalities.
When I put my needles in, the couple stepped away from the stairway in case one or both felt a fainting spell come on.
So, no matter how much I try to warn our visitors that dialysis is clearly not a spectator sport, it seems unavoidable that at times, company truly does love misery.
Thanks for reading. Take care.
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I so get this....being the caregiver for my daughter. Even when family shows up....I can tell that they are uncomfortable. We try to set up for dialysis before anyone shows up...even if it means that we get up at 3am! :urcrazy;
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:rofl; :clap;
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Yup. I can relate. My brother wants to bring people over to watch. I feel like a freak on display sometimes. Oh, and we needed to have an intense meeting with my 88 year old dad about my 91 year old demented mother needing to go to a memory care facility and he wanted to bring my dad over to meet with me on dialysis. Well, I've only been doing it for three months and I have BP issues and random anxiety attacks. So I told him no, that is not the optimal time to meet. I need to stay calm. People are clueless, aren't they? And one relative I have wants to come once a week keep me company and "help.". Well, I really don't mind being left to my own devices. She sort of drives me nuts. And I feel like a captive audience sitting there having to talk for three and a half hours when I don't really want to. But she is lonely and I don't want to be rude. :bo :banghead;
:thx; for a great column.
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Two observations, one Bob think how fast the contractor would have run if you had a squirted, the second is I think that people in the dialysis selection mostly don't want people to feel sorry for us so we minimize the impact of dialysis on our lives. Dialysis is a horrible sport to participate in and mostly too boring to watch, however from time to time it gets exciting, I think of the patient who popped a needle and it was like a small cartoon fire hose flying around spraying blood every where.
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Xplant, PT, Lis, Michael,
See? I knew misery would love company on this issue!
Thanks.
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For some reason I imagined you lived in the NorthEast. Sort of surprised I was that far off.
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I don't mind company while doing dialysis - I can get lonely if there's not much going on.
My machine is setup in an alcove in the kitchen/dining room, and I do dialysis in the evening, so often there is quite a few people around. I'm from a large family - dinner includes 6 to 8 other people every night! There is a bubble of space that everyone knows to stay out of when I'm hooking up and disconnecting. Otherwise they are welcome to stick around.
Our family's kidney battle has been going on for 9.5 years now with 3 kidney "kids", 5 transplants, 2 kidney donors, and all the currently available dialysis options tried (on me!). So we are used to it - but it doesn't make it any more fun.
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You should charge money for the show!
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Thanks again Bob ! :grouphug;
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KatieV, so sorry to hear about all the kidney trouble in your family, but glad you find comfort in having company during your treatments.
kitkatz, kristina, thanks. kitkatz, I hadn't thought about charging admission. Wonder what I could get for front row seats...
Charlie, no you were right. We lived in Texas for 23 years, but now we're in New Hampshire.
Take care y'all.
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I no longer allow company during canulation and hookup unless there is a dang good reason. When I treat in-center, I generally chase the RN/tech away until the needles are in and taped up. I find I do a better job, with fewer mistakes, without an audience.
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I no longer allow company during canulation and hookup unless there is a dang good reason. When I treat in-center, I generally chase the RN/tech away until the needles are in and taped up. I find I do a better job, with fewer mistakes, without an audience.
I'm with you on that.
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I have to admire the self-confidence of those of you that manage to self-cannulate. I hope I spelt that right. My spell checker doesn't think so.
Needle phobia would have me sound asleep if anyone came at me with that big of needles. I managed to make myself test my sugar and use insulin, that's about it. A couple of the rigs I have been using to dose my bags this past two weeks are much larger than my insulin 30's. I can't imagine sticking myself even with them.
You people have a strength I've never had to develop, and Pray I don't have to for a very long time.
Keep taking great care of yourselves!
Charlie B53
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When I was on PD, I didn't mind an audience once in a while... my ex was fascinated by it.. he liked to watch me set up and connect... and he didn't mind putting on the mask and keeping his hands in his pockets...
Now, the only time I have company in dialysis is in New York.. my best friend stays with me, though my mom never does.. my friend is fascinated by it too.. she's always asking me or the nurse questions about the machine.. what the numbers mean, what everything does.. When I'm at home, though, I'm by myself... my mom drops me off and goes home and comes back to pick me up after the treatment is finished... They don't allow visitors in until everyone is hooked up.. they say that it's for safety and privacy reasons.. most of the time, I'm ok with being alone in diaysis, because I just watch Netflix and pay no attention to anyone else, but sometimes I do feel a little lonely, and wouldn't mind having someone to talk with..