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.

trishanna | @trishanna | Aug 23, 2020
In reply to @kamama94 "@gingerw,@fiesty76,@dhelmstetter, thank you for the information and support. I had hoped to hear from more folks..." + (show)
@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 Well, dear lady, wish you well on this new journey. Now I think you've got a very good team caring for you, but have to wonder if in light of these new developments you might consider Mayo Clinic? Or, if not Mayo, perhaps another center near you. Don't know how convenient such a visit would be, but it seems to me that no answer is an unacceptable answer. I tend to believe that there are all kinds of medical experts out there who just may know the answer. The trick is to find him her!! In the meantime, please know we are all with you in spirit, and hope you'll have some good news for us soon!!! Take care!

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1 reply
kamama94 | @kamama94 | Aug 24, 2020
In reply to @dhelmstetter "My cause was "Goodpastures Syndrome" - a VERY rare autoimmune disease. Had to endure dialysis along..." + (show)
@dhelmstetter

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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@dhelmstetter, I certainly wish you well. CKD sure can be a nightmare. Sending you healing vibes!

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kamama94 | @kamama94 | Aug 24, 2020
In reply to @trishanna "@kamama94 Well, dear lady, wish you well on this new journey. Now I think you've got..." + (show)
@trishanna

@kamama94 Well, dear lady, wish you well on this new journey. Now I think you've got a very good team caring for you, but have to wonder if in light of these new developments you might consider Mayo Clinic? Or, if not Mayo, perhaps another center near you. Don't know how convenient such a visit would be, but it seems to me that no answer is an unacceptable answer. I tend to believe that there are all kinds of medical experts out there who just may know the answer. The trick is to find him her!! In the meantime, please know we are all with you in spirit, and hope you'll have some good news for us soon!!! Take care!

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@trishanna, my neph is from Mayo's. I can't get there and can't afford it even if I could but have every confidence in the docs at the 2 medical schools here and in my hospital. Maybe I'll know something more today. Lab results came in over the week-end so I know we can rule out autoimmune causes from my lab readings. I still say shingles, neph is doubtful. We may never know. My 2nd theory is elegantly simple, therefore probably accurate - my remaining partially functiioning kidney simply got tired and quit. It is what it is. Thank you for your support, I'll be forever grateful for these fora. Will keep you posted.

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Aug 24, 2020

@kamama94 I’m keeping you in constant thoughts and prayers.

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kamama94 | @kamama94 | Aug 24, 2020

Dialysis journey update: Am to see vascular surgeon Thurs. I asked seriously if they thought I'd still be alive and they took me seriously and told me if I started feeling worse to go to ER and have surgeon paged for emergency dialysis access. Lovely. Am I scared? Heckyeah!

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1 reply
fiesty76 | @fiesty76 | Aug 24, 2020
In reply to @kamama94 "Dialysis journey update: Am to see vascular surgeon Thurs. I asked seriously if they thought I'd..." + (show)
@kamama94

Dialysis journey update: Am to see vascular surgeon Thurs. I asked seriously if they thought I'd still be alive and they took me seriously and told me if I started feeling worse to go to ER and have surgeon paged for emergency dialysis access. Lovely. Am I scared? Heckyeah!

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@kamama94, Well brave you for asking! Well of Course that is a scary response ! Otoh, you were a smartie to even ask the question. So now we hang tight; keep positive like you are; and check to gauge how you are feeling a bit more often throughout each day. Now you have more information about what to do if you should need to go to ER. You have earned some indulgences so treat yourself to something that can bring a smile...and if mischief is an option, I'm available...Hugs

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2 replies
kamama94 | @kamama94 | Aug 24, 2020
In reply to @fiesty76 "@kamama94, Well brave you for asking! Well of Course that is a scary response ! Otoh,..." + (show)
@fiesty76

@kamama94, Well brave you for asking! Well of Course that is a scary response ! Otoh, you were a smartie to even ask the question. So now we hang tight; keep positive like you are; and check to gauge how you are feeling a bit more often throughout each day. Now you have more information about what to do if you should need to go to ER. You have earned some indulgences so treat yourself to something that can bring a smile...and if mischief is an option, I'm available...Hugs

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@fiesty76, you made me giggle.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 24, 2020
In reply to @fiesty76 "@kamama94, Well brave you for asking! Well of Course that is a scary response ! Otoh,..." + (show)
@fiesty76

@kamama94, Well brave you for asking! Well of Course that is a scary response ! Otoh, you were a smartie to even ask the question. So now we hang tight; keep positive like you are; and check to gauge how you are feeling a bit more often throughout each day. Now you have more information about what to do if you should need to go to ER. You have earned some indulgences so treat yourself to something that can bring a smile...and if mischief is an option, I'm available...Hugs

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@fiesty76 Do we need to gather coins from the cushions and start figuring bail money for you and @kamama94? I can only imagine the shenanigans you two could get in to ;))
Ginger

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kamama94 | @kamama94 | Aug 24, 2020

@gingerw. @fiesty76. So many escapades come to mind. Start digging in the couch.

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trishanna | @trishanna | Aug 24, 2020

@kamama94 , @fiesty76, @gingerw Hey, you two, don't know but what I'd like to join you! But at the least, I'll help with bail, Ginger! I keep threatening to run away from home! Anybody ever hear of an 81-year-old runaway? Ha! With all my health problems, can't think of a single sin I can commit - no drunkenness, no smoking, no overeating, not even staying up late - well, you get the idea! Hang in there, kamama!

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