1. < Kidney & Bladder
Mentor

What's your experience with dialysis? Give & get support here

Posted by Rosemary, Volunteer Mentor @rosemarya, Mar 7, 2019

Dialysis is required if your kidneys don't function adequately on their own. Your doctor will discuss with you the type of dialysis that's best for you. Dialysis treatment is a serious responsibility, You'll need to work closely with your health care team who have experience in managing dialysis. Open communication with your health care team is essential to your overall health.

Fellow patients are a wonderful source of support and practical information because of a shared dialysis experience.
If you are a dialysis patient, or loved one of a patient, what are some things that you have experienced that might be helpful to someone who is new to dialysis? What kind of life adjustments have you had to make? How has it affected your everyday life?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 27, 2020
In reply to @kamama94 "Neph just called, is sending out compazine for the dry heaves and says I'm on the..." + (show)
@kamama94

Neph just called, is sending out compazine for the dry heaves and says I'm on the schedule for dialysis next Wed AM after next Tues PM perma-cath placement. Assured me I'll feel better soon.

Phew!

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Gentle hugs are on the way, @kamama94.
You are going to be busy next week as you get set for and begin dialysis. I bet you will feel better after you get used to the 'idea' of having dialysis. I did not have any prep, as my kidney failure was sudden, although in hindsight I wonder how much of my misery with failing liver was enhanced by a failing kidney. Guess I'll never know.
When I was reading your earlier post, I was thinking that your neph is a gem! Did he tell you what he meant by feeling worse?

REPLY
1 reply
fiesty76 | @fiesty76 | Aug 27, 2020
In reply to @kamama94 "@gingerw, thanks for asking! Feeling a bit better after a very rough morning of headache, dizziness,..." + (show)
@kamama94

@gingerw, thanks for asking!

Feeling a bit better after a very rough morning of headache, dizziness, nausea.

I have known my surgeon for years, he's one of the best. He wants to do a right-sided permacath next Tues so I can have dialysis the next day. Then a week later he'll do a left arm AV fistula for longer-term dialysis. He explained his techiques in detail and said he wants me under general anesthesia while he stitches vein to artery. I was right, my veins are very small but he's evolvd a technique to compensate for it.

I saw him early this morning then had to go to the hospital for pre-op stuff - ekg, more lab work, anesthesia consult, etc. I'm wiped out but less anxious.

I finally found out why the runaround and the delays in treatment - Medicare won't pay for hospital dialysis, only for dialysis at an approved cllinic but because there are hoops to jump through before Medicare will pay for the pre-dialysis surgery, it takes awhile to get everything in place. I told my surgeon I hoped I was still alive by then. He laughed then got serious and said it was his opinion and the nephrologist's opiniion that I was stable enough for now but if I started feeling worse to go to ER and page him.

I reminded him of some of the pranks he pulled on us during my student nursing days and he pled guilty. I told him I forgave him, LOL, but he owed me one.

I feel a nap coming on soon. . .

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@kamama94, Yucky symptoms but good to hear you have such a wonderfully strong relationship with your surgeon. What an extra boost in confidence that must give you! Glad you are feeling spiffy enough to give him a hard time that he owes you one....or two.....or...
Understanding the process and any delays caused eases the situation too I'd imagine. Just wish our pros would explain more beforehand. Medicare is great to have but the rigamarole they put staff and patients through to get approvals is hair pulling at best.

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1 reply
trishanna | @trishanna | Aug 27, 2020

@kamama94, @rosemarya. Rather agree with Rosemarya. If I were to be suddenly faced with dialysis, I should think I would feel a lot more apprehensive about what all is entailed in the prep, procedures, whatever, not to mention not knowing the cause for sure. I remember being given a warning by the radiologist that the biopsy I was about to undergo (I was in front of the CT scanner) was likely to cause all kinds of terrible, horrible problems, including immediate hospitalization, excessive bleeding, and who knows what else. Absolute panic with no one to ask - my nephew was a jerk and I did have sarcoma cancer. Anyhow, the days that followed were not good, so I understand how you feel. In the next couple of days, please be kind to yourself in any way possible, and accept any and all offers of help, hear? It is very hard for me to not "do it myself" but sometimes necessary, I think.

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1 reply
kamama94 | @kamama94 | Aug 28, 2020
In reply to @rosemarya "Gentle hugs are on the way, @kamama94. You are going to be busy next week as..." + (show)
@rosemarya

Gentle hugs are on the way, @kamama94.
You are going to be busy next week as you get set for and begin dialysis. I bet you will feel better after you get used to the 'idea' of having dialysis. I did not have any prep, as my kidney failure was sudden, although in hindsight I wonder how much of my misery with failing liver was enhanced by a failing kidney. Guess I'll never know.
When I was reading your earlier post, I was thinking that your neph is a gem! Did he tell you what he meant by feeling worse?

Jump to this post

@rosemarya, thanks for the gentle hugs. Yes, my neph is a gem. She and I have great rapport. She trained at Mayo's and came back here to serve her home town, is considered one of the best in the country. She specified feeling worse as in increased shortness of breath, fever, increased nausea and/or headache in spite of new tummy med (compazine.) Said go to ER any way I could get there and have her and surgeon paged. But she said she didn't think it would come to that. Very reassuring. Surgeon says she's one of the best, primary says same thing, she says surgeon is one of the best. I know the surgeon very well so I believe him. Also trust primary, who gave me his personal email, and he says same thing. So my anxiety level is down a notch. Neph called me last evening and said she was a little surprised at my anxiety level as she thought of me aas fearless. Hah! I told her I compensate well, LOL.

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1 reply
kamama94 | @kamama94 | Aug 28, 2020
In reply to @fiesty76 "@kamama94, Yucky symptoms but good to hear you have such a wonderfully strong relationship with your..." + (show)
@fiesty76

@kamama94, Yucky symptoms but good to hear you have such a wonderfully strong relationship with your surgeon. What an extra boost in confidence that must give you! Glad you are feeling spiffy enough to give him a hard time that he owes you one....or two.....or...
Understanding the process and any delays caused eases the situation too I'd imagine. Just wish our pros would explain more beforehand. Medicare is great to have but the rigamarole they put staff and patients through to get approvals is hair pulling at best.

Jump to this post

@fiesty76, hair-pulling is right. And at my age with my thinning hair, I can't spare that much hair. BTW, thanks to you and everyone else for the wonderful support. Yep, surgeon is a real peach. When I told him I forgave him for his jokes on us nurses he said that's why he loves me, LOL. Nothing like great rapport with the guy holding the scalpel, LOL!

REPLY
2 replies
kamama94 | @kamama94 | Aug 28, 2020
In reply to @trishanna "@kamama94, @rosemarya. Rather agree with Rosemarya. If I were to be suddenly faced with dialysis, I..." + (show)
@trishanna

@kamama94, @rosemarya. Rather agree with Rosemarya. If I were to be suddenly faced with dialysis, I should think I would feel a lot more apprehensive about what all is entailed in the prep, procedures, whatever, not to mention not knowing the cause for sure. I remember being given a warning by the radiologist that the biopsy I was about to undergo (I was in front of the CT scanner) was likely to cause all kinds of terrible, horrible problems, including immediate hospitalization, excessive bleeding, and who knows what else. Absolute panic with no one to ask - my nephew was a jerk and I did have sarcoma cancer. Anyhow, the days that followed were not good, so I understand how you feel. In the next couple of days, please be kind to yourself in any way possible, and accept any and all offers of help, hear? It is very hard for me to not "do it myself" but sometimes necessary, I think.

Jump to this post

@trishanna, what a journey you have had! I already knew a lot of the gory details because of my nursing background and even knowing whys and wherefores I'm still nervous. I'm so, so, so glad you are still with us!

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marvinjsturing | @marvinjsturing | Aug 28, 2020
In reply to @kamama94 "@fiesty76, hair-pulling is right. And at my age with my thinning hair, I can't spare that..." + (show)
@kamama94

@fiesty76, hair-pulling is right. And at my age with my thinning hair, I can't spare that much hair. BTW, thanks to you and everyone else for the wonderful support. Yep, surgeon is a real peach. When I told him I forgave him for his jokes on us nurses he said that's why he loves me, LOL. Nothing like great rapport with the guy holding the scalpel, LOL!

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@kamama94 First I want to let you know that I am praying for you. Second, I am enjoying reading about your relationship with your surgeon. I taught school for 18 years. Six years ago when I was going through chemo, the nurse standing there with a needle in her hand getting ready to put poison in my body had been one of my students. I was hoping that I did a good job of teaching her and that she didn't hold any grudges. She too was a peach.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 28, 2020
In reply to @kamama94 "@rosemarya, thanks for the gentle hugs. Yes, my neph is a gem. She and I have..." + (show)
@kamama94

@rosemarya, thanks for the gentle hugs. Yes, my neph is a gem. She and I have great rapport. She trained at Mayo's and came back here to serve her home town, is considered one of the best in the country. She specified feeling worse as in increased shortness of breath, fever, increased nausea and/or headache in spite of new tummy med (compazine.) Said go to ER any way I could get there and have her and surgeon paged. But she said she didn't think it would come to that. Very reassuring. Surgeon says she's one of the best, primary says same thing, she says surgeon is one of the best. I know the surgeon very well so I believe him. Also trust primary, who gave me his personal email, and he says same thing. So my anxiety level is down a notch. Neph called me last evening and said she was a little surprised at my anxiety level as she thought of me aas fearless. Hah! I told her I compensate well, LOL.

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@kamama94 There are many of us who compensate, or mask, what is really going on inside of us. It's a survival tool. Been there, doing that, bought the t-shirt! Rest as much as you can or see fit to. Come here and gather our support around you, a cloak of strength. We're next to you, virtually to be sure, but never far away.
Ginger

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fiesty76 | @fiesty76 | Aug 28, 2020
In reply to @kamama94 "@fiesty76, hair-pulling is right. And at my age with my thinning hair, I can't spare that..." + (show)
@kamama94

@fiesty76, hair-pulling is right. And at my age with my thinning hair, I can't spare that much hair. BTW, thanks to you and everyone else for the wonderful support. Yep, surgeon is a real peach. When I told him I forgave him for his jokes on us nurses he said that's why he loves me, LOL. Nothing like great rapport with the guy holding the scalpel, LOL!

Jump to this post

@kamama94, Couldn't agree with you more about having great rapport with the scalpel holder! Thinking of you.

REPLY
fiesty76 | @fiesty76 | Aug 28, 2020
In reply to @marvinjsturing "@kamama94 First I want to let you know that I am praying for you. Second, I..." + (show)
@marvinjsturing

@kamama94 First I want to let you know that I am praying for you. Second, I am enjoying reading about your relationship with your surgeon. I taught school for 18 years. Six years ago when I was going through chemo, the nurse standing there with a needle in her hand getting ready to put poison in my body had been one of my students. I was hoping that I did a good job of teaching her and that she didn't hold any grudges. She too was a peach.

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@marvinjsturing, Your post brought a smile because I had a similar experience with a former student! Glad yours, too, was a peach and not a sour lemon!!!

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