Connect
← Return to Decisions about dialysis
Discussion
Comment receiving replies
Hi Angie,
My experience with dialysis was not a good one and I won't do it again. I had renal failure suddenly from contrast die during a CT scan and an unknown, underlying kidney disease, minimal change disease. I was on dialysis almost 4 months and it made me horribly sick every time (that is not everyone's experience) – until I came to Mayo in Rochester for a second opinion. I dialised there during my visit and my nephrologist, Dr. Latonya Hickson (who I LOVE) made adjustments to the filters and rates (and probably other stuff I don't remember) that made it much more tolerable for me. She then figured out what was wrong, why I wasn't improving, and treated me. I was able to come off dialysis a couple months later. I can't say enough about Dr. Hickson - she is so positive, supportive, competent... I would encourage you to find a doctor that could talk to your husband about the process. Sometimes we need to hear it from an outside source. If you're in Rochester they might let you see the dialysis center - it's very nice and they make you very comfortable. It's such a personal decision and your husband is fortunate to have your support either way, though it must be really tough for you. Happy to talk anytime. Take care.
Momi Jhung
Replies to "Hi Angie, My experience with dialysis was not a good one and I won't do it..."
Hi Rosemary, my minimal change disease is in remission right now though it is still monitored and controlled. My understanding is that it's not uncommon for relapses to occur, and I did have one relapse early on. Unfortunately, the kidney failure seems to have triggered some other autoimmune diseases which have continued to be a real struggle for me. I'm very grateful for all of my doctors at Mayo - not sure where I'd be without them. Take care. Momi
Thank you..I am hopeful that he would feel better, not worse 🙂 🙁 I have no idea about 2nd opinions, etc...first I think we will get thru the decision and see how it goes.
Sorry to hear that you have ongoing issues...auto immune diseases are not friendly!
@momij, my 19 year old daughter has had an autoimmune disease since she was 6 and they are a challenge. Often a rollercoaster ride to keep it under control. I'm sure your Mayo doctors know the latest and best treatment. Hang in there!
@angiede2001, I send you my wishes and thoughts. Making decisions can be difficult. But it sounds to me like he and you are working thru this decision, look to his medical team for information as it relates to him. They will be the best ones to walk you thru this. Keep in mind, also, that all of us have different bodies, different health issues, and different reactions to treatment. Second opinions are always an option if you are not satisfied or if you have unanswerable questions.
I hope your husband feels better, soon.
Rosemary
@lcamino and @momij, We do have a discussion forum for autoimmune diseases if you are interested.
https://connect.mayoclinic.org/group/autoimmune-diseases/
Thank you being part of this discussion. Your strength and determination are powerful examples to all of us.
Rosemary
Thank you, Rosemary. His dr is retiring, so his next apt is in June with a new nephrologist. He wants to wait till then. I may try to see if he'll go sooner to get a second opinion. Tightrope!
@angiede2001, If his medical needs are being met, and he is satisfied, he might not want a second opinion. Let me know what you decide in June?
Has he made a decision, or started dialysis? I hope he is doing okay either way.
Rosemary
He is only supposed to get his shunt and teaching rt now..13%
Connect
@momij, I would like to welcome you to Connect. Here we can ask questions without judgment. Here we can support and encourage each other by sharing our experiences. Thank you for sharing. You just jumped right in - I love that!
What an awful thing to have happened to you. Thankfully you made the wise decision to seek a second opinion, at Mayo. And WOW, look at you now. So you have an underlying kidney disease? Is it gone now with the discovery and treatment? Or is it something that is monitored and controlled? I ask that question because in my situation, I had a liver disease, and now it is gone because of my transplant. My boys say I'm nosey!
BTW, I was in Rochester and dialised there, too. Fantastic dialysis clinic!
I invite you to join in any of the discussions that sound interesting to you! I look forward to hearing more from you.
Rosemary