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.

@dhelmstetter, thanks for telling me. I was under the impression that people could work on their laptops during dialysis but that would require arm movement. The needle thing doesn't bother me but being immobile for 3 1/2 hrs doesn't sound like a picnic. Has your care team offered any explanation for feeling like a basket case afterward?

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@kamama94

@dhelmstetter, thanks for telling me. I was under the impression that people could work on their laptops during dialysis but that would require arm movement. The needle thing doesn't bother me but being immobile for 3 1/2 hrs doesn't sound like a picnic. Has your care team offered any explanation for feeling like a basket case afterward?

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I believe it is common. One time the doc wanted me on for 4 hours. I remained a zombie once home and got put to bed after about 2 hours just starting at a spot on the wall. I phoned the next day refusing to go so long ever again... Now I am down to two days a week - I still have limited kidney function and do urinate regularly...

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@kamama94

Looking like pre-dialysis vascular surgery might be sooner rather than later. Any and all info, even negative, will be appreciated, incl details about vascular port, what dialyssis is like during and in between sessions, etc.

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@kamama94, Oh, I am sorry to hear this. Like you, I want to know as much as possible about my options so I'm sending you added energy for your research in learning more of what to expect. Please keep us informed. Sending cyber hugs your way!

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@fiesty76, Thanks and hugs back! Will keep you posted.

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@kamama94, Good deal. Will look forward to hearing how things go for you moving forward.

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eGFR dropped from 20 to 8 in a couple of weeks, neph appointment tomorrow morning to discuss dialysis prep as all of a sudden I am end-stage. Any info about dialysis will be welcome.

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@gingerw,@fiesty76,@dhelmstetter, thank you for the information and support. I had hoped to hear from more folks who know firsthand about dialysis but since that hasn't happened I'll just update everyone. I spent most of Fri at the hospital with docs having an ultrasound, blood work, etc., as neph wanted to determine a cause for such a sudden and drastic drop in eGFR in the hope of reversing it. So far it seems to be a mystery to all of us.

The plan now is for me to have outpatient surgery the first of the coming week for a central line for immediate dialysis if needed as well as an arm fistula or graft for longer term dialysis. This couldn't be scheduled on a Friday afternoon and I'd prefer Monday or Tuesday procedures instead of having them done right before a week-end. That way I can stay home with 2 caregivers, Buckey and neighbor/friend who comes over 4 times a day to help out.

As soon as I know when I'm to have those procedures done, I'll post that here if I can. This way all of you can go on my journey with me and read about various elements of my dialysis adventures firsthand.

Keep the positive vibes coming!

Hope and love live here.

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@kamama94, Thanks for the update. So disappointing when docs and tests cannot pinpoint the causes of sudden changes. Modern advances in medicine have come so far that it is a letdown now when specifics aren't always found or determined. I'm with you on preferring to have procedures carried out during the work week so hope you will be able to let us know what happens and how you are doing this coming week. So glad that you have people who will be available to check on you and help out. Know that you will be in our thoughts, prayers as you begin this new journey. Sending cyber strength and calm your way.

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@kamama94

@gingerw,@fiesty76,@dhelmstetter, thank you for the information and support. I had hoped to hear from more folks who know firsthand about dialysis but since that hasn't happened I'll just update everyone. I spent most of Fri at the hospital with docs having an ultrasound, blood work, etc., as neph wanted to determine a cause for such a sudden and drastic drop in eGFR in the hope of reversing it. So far it seems to be a mystery to all of us.

The plan now is for me to have outpatient surgery the first of the coming week for a central line for immediate dialysis if needed as well as an arm fistula or graft for longer term dialysis. This couldn't be scheduled on a Friday afternoon and I'd prefer Monday or Tuesday procedures instead of having them done right before a week-end. That way I can stay home with 2 caregivers, Buckey and neighbor/friend who comes over 4 times a day to help out.

As soon as I know when I'm to have those procedures done, I'll post that here if I can. This way all of you can go on my journey with me and read about various elements of my dialysis adventures firsthand.

Keep the positive vibes coming!

Hope and love live here.

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@kamama94 We'll be crowded in the room alongside of you, not to worry! It might be a virtual crowd, but never fear, you'll feel our energy. I sure hope they can find the information needed to figure out the reason for the eGFR drop.
Ginger

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@kamama94

@gingerw,@fiesty76,@dhelmstetter, thank you for the information and support. I had hoped to hear from more folks who know firsthand about dialysis but since that hasn't happened I'll just update everyone. I spent most of Fri at the hospital with docs having an ultrasound, blood work, etc., as neph wanted to determine a cause for such a sudden and drastic drop in eGFR in the hope of reversing it. So far it seems to be a mystery to all of us.

The plan now is for me to have outpatient surgery the first of the coming week for a central line for immediate dialysis if needed as well as an arm fistula or graft for longer term dialysis. This couldn't be scheduled on a Friday afternoon and I'd prefer Monday or Tuesday procedures instead of having them done right before a week-end. That way I can stay home with 2 caregivers, Buckey and neighbor/friend who comes over 4 times a day to help out.

As soon as I know when I'm to have those procedures done, I'll post that here if I can. This way all of you can go on my journey with me and read about various elements of my dialysis adventures firsthand.

Keep the positive vibes coming!

Hope and love live here.

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My cause was "Goodpastures Syndrome" - a VERY rare autoimmune disease. Had to endure dialysis along with Plasms-ferisus (sp?) a process similar to dialysis but works with the plasma and labumin. Along with Chemo pills, that process DID end the GoodPastures, but my kidneys went from acute to end-stage. I was also warned before a major abdominal aneurysm surgery 6 months earlier that it may result in kidney failure. Either way... I'm now awaiting evaluation next week to see if I'll be a viable candidate for a transplant. I'm 'eager with apprehension.'

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