Hello my Name is Enid and I am new to this group. I am currently on dialysis. I started dialysis last year. I have been experiencing doctors not explaining anything to you on what it means to go on dialysis. Bedside manners that are empty without compassion or empathy. I have experienced where they don't want to answer your questions. I was made to get a fistula without being explained what it entails to get one. I still don't know what caused me to get to stage for kidney disease. I still can urinate and wonder if I can reverse dialysis. Doctors don't want to help me find holistic solutions. I feel like as long I sit in those dialysis chairs with my MR# attached that I'm just their paycheck at the end of the week. They don't want to help get you better they just manage you until you die. Can anyone please Help Me.
@enidbennett Welcome to Mayo Clinic Connect. I am sorry you find yourself in this predicament.
@veryoldhippy has said some wise words for you to consider. There is a lot of information out there. We each have our own story.
Let's start with how you got to stage 4 and on dialysis. The leading causes for kidney disease are diabetes and high blood pressure. Are you under treatment for either of those? Also, medication side effects or lifestyle can cause kidney disease. Ask your nephrologist for specific information! You mentioned you "were made to get a fistula" without explanation. You have the final say so in your treatment, always remember that! If you are not comfortable with what they want to do, don't agree to it until your questions are answered to your satisfaction. Do you have a trusted friend or family member who will help you and stand by you, being your support team?
Ask to speak with the dialysis clinic social worker, and voice your concerns. You want to feel comfortable.
Ginger
@enidbennett You are doing the right thing by coming here. This is very frustrating and confusing for those who aren't educated in medicine, biology, anatomy and pharmacology! The next step is to read the comments and issues here and at several other places like the National Kidney Foundation and the Davita website to find out what's best for you. You must be your own advocate, follow the dietary guidelines for your own lab reports. It must be said that you have the right to see your medical record, then find out what it means. If your doctor won't explain things to you, then get a different doctor!
While at dialysis is a good time to read up on things and ask questions to your nurses, look up the parts you don't understand. I find that a sense of humor will help with developing friendship with the people who work in the field.
There aren't any holistic solutions, no cure once the kidneys are damaged. Be very careful with supplements and vitamins. The best we can do is eat according to our labs, educate ourselves and do the best we can with what we've got! YOU CAN DO THIS! I want to offer you encouragement, maybe the idea to see a counselor or patient advocate to help you through this tough time. It has really helped me!
@gingerw Thank you. I questioned my lab results beginning in 2021. They told me I was getting old and to drink more water, that the lab results were fine. They most assuredly were not fine and I questioned them further, finally telling them to not call me with results again, that if I had questions I would go directly to the PCP. Then, after drinking a gallon of water a day (yes, I measured it), the muscle cramps set in even moreso. I added electrolytes, figuring it was from doing yard work in the hot summertime. I ended up in the ER twice - was sent home the first time with a tiny mention of kidney function. The second time, I was directly admitted for pyelonephritis, a stone, fluid-overload, sepsis and heart damage. My eGFR is 20, creatinine very high. I had a heart cath and was two weeks in the hospital on IV antibiotics. I think the 4cm stone passed, but not sure because I am DONE with procedures unless it's an absolute emergency.
I have cut back on fluids per nephrology at 60oz. per day and less than 60 grams of protein. I had a vitamin panel ran because of the diarrhea and other issues and after having an allergic reaction to furosemide. We changed the diuretic to torsemide and that seems to help somewhat. With the nausea and not eating right for quite some time, the vitamin panel did show anemia and high vitamin A. I was taking a prenatal vitamin once in a while without realizing they were so high in vitamin A as are the wonderful veggies I love! I threw out the rest of those vitamins and was prescribed a liquid iron to take three times a week. It's really taking a long time to feel better and get some energy back. Every day is a new Day! LOL
@gingerw I retired from medical coding, have taken pre-med classes plus more. That is why I encourage people to learn about their bodies and issues. It takes away a lot of the fear and helps us advocate for ourselves. Obviously, self-advocacy or taking someone with you who understands these things is imperative.
@gingerw Thank you. I questioned my lab results beginning in 2021. They told me I was getting old and to drink more water, that the lab results were fine. They most assuredly were not fine and I questioned them further, finally telling them to not call me with results again, that if I had questions I would go directly to the PCP. Then, after drinking a gallon of water a day (yes, I measured it), the muscle cramps set in even moreso. I added electrolytes, figuring it was from doing yard work in the hot summertime. I ended up in the ER twice - was sent home the first time with a tiny mention of kidney function. The second time, I was directly admitted for pyelonephritis, a stone, fluid-overload, sepsis and heart damage. My eGFR is 20, creatinine very high. I had a heart cath and was two weeks in the hospital on IV antibiotics. I think the 4cm stone passed, but not sure because I am DONE with procedures unless it's an absolute emergency.
I have cut back on fluids per nephrology at 60oz. per day and less than 60 grams of protein. I had a vitamin panel ran because of the diarrhea and other issues and after having an allergic reaction to furosemide. We changed the diuretic to torsemide and that seems to help somewhat. With the nausea and not eating right for quite some time, the vitamin panel did show anemia and high vitamin A. I was taking a prenatal vitamin once in a while without realizing they were so high in vitamin A as are the wonderful veggies I love! I threw out the rest of those vitamins and was prescribed a liquid iron to take three times a week. It's really taking a long time to feel better and get some energy back. Every day is a new Day! LOL
@veryoldhippy Your story points out to us [again] the value of educating ourselves, understanding our own body [who else knows it better!?] and being aware of changes. Medications that work with us can change, as your example of furosemide shows. Like you, I took furosemide for years until it no longer was right for me, and now am on torsemide.
It never ceases to amaze me how just small things can make a difference in how we feel. And even in the course of a few days or week, change-ups in our routine or diet definitely affect us.
Ginger
@veryoldhippy Your story points out to us [again] the value of educating ourselves, understanding our own body [who else knows it better!?] and being aware of changes. Medications that work with us can change, as your example of furosemide shows. Like you, I took furosemide for years until it no longer was right for me, and now am on torsemide.
It never ceases to amaze me how just small things can make a difference in how we feel. And even in the course of a few days or week, change-ups in our routine or diet definitely affect us.
Ginger
@gingerw It seems like most people don't understand how the body works. That brings more fear when they get a diagnosis like this. I do believe that, at times, we go through some tough times in order to help others.
I've also had every major joint replaced but one hip - plus had two spinal fusions and was born with an immune deficiency called Common Variable Immunodeficiency. I have studied a tiny bit of genetics, found the 'broken genes' for that and for lupus. My father and his mother also had the immune deficiency, as proven by their medical records. I am the last of the immediate family, so maybe these experiences can help other people, allow me to be of some use before I kak off. LOL Having a sense of humor helps, too. I like to laugh at myself before other people get a chance to!
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@enidbennett Welcome to Mayo Clinic Connect. I am sorry you find yourself in this predicament.
@veryoldhippy has said some wise words for you to consider. There is a lot of information out there. We each have our own story.
Let's start with how you got to stage 4 and on dialysis. The leading causes for kidney disease are diabetes and high blood pressure. Are you under treatment for either of those? Also, medication side effects or lifestyle can cause kidney disease. Ask your nephrologist for specific information! You mentioned you "were made to get a fistula" without explanation. You have the final say so in your treatment, always remember that! If you are not comfortable with what they want to do, don't agree to it until your questions are answered to your satisfaction. Do you have a trusted friend or family member who will help you and stand by you, being your support team?
Ask to speak with the dialysis clinic social worker, and voice your concerns. You want to feel comfortable.
Ginger
@veryoldhippy Welcome to Mayo Clinic Connect! Thank you for answering the post from @enidbennett. You offer some wise words, there.
I look forward to hearing your story, if you want to share with me?
Ginger
@gingerw Thank you. I questioned my lab results beginning in 2021. They told me I was getting old and to drink more water, that the lab results were fine. They most assuredly were not fine and I questioned them further, finally telling them to not call me with results again, that if I had questions I would go directly to the PCP. Then, after drinking a gallon of water a day (yes, I measured it), the muscle cramps set in even moreso. I added electrolytes, figuring it was from doing yard work in the hot summertime. I ended up in the ER twice - was sent home the first time with a tiny mention of kidney function. The second time, I was directly admitted for pyelonephritis, a stone, fluid-overload, sepsis and heart damage. My eGFR is 20, creatinine very high. I had a heart cath and was two weeks in the hospital on IV antibiotics. I think the 4cm stone passed, but not sure because I am DONE with procedures unless it's an absolute emergency.
I have cut back on fluids per nephrology at 60oz. per day and less than 60 grams of protein. I had a vitamin panel ran because of the diarrhea and other issues and after having an allergic reaction to furosemide. We changed the diuretic to torsemide and that seems to help somewhat. With the nausea and not eating right for quite some time, the vitamin panel did show anemia and high vitamin A. I was taking a prenatal vitamin once in a while without realizing they were so high in vitamin A as are the wonderful veggies I love! I threw out the rest of those vitamins and was prescribed a liquid iron to take three times a week. It's really taking a long time to feel better and get some energy back. Every day is a new Day! LOL
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Like -
Helpful -
Hug
1 Reaction@gingerw I retired from medical coding, have taken pre-med classes plus more. That is why I encourage people to learn about their bodies and issues. It takes away a lot of the fear and helps us advocate for ourselves. Obviously, self-advocacy or taking someone with you who understands these things is imperative.
-
Like -
Helpful -
Hug
1 Reaction@veryoldhippy Your story points out to us [again] the value of educating ourselves, understanding our own body [who else knows it better!?] and being aware of changes. Medications that work with us can change, as your example of furosemide shows. Like you, I took furosemide for years until it no longer was right for me, and now am on torsemide.
It never ceases to amaze me how just small things can make a difference in how we feel. And even in the course of a few days or week, change-ups in our routine or diet definitely affect us.
Ginger
@gingerw It seems like most people don't understand how the body works. That brings more fear when they get a diagnosis like this. I do believe that, at times, we go through some tough times in order to help others.
I've also had every major joint replaced but one hip - plus had two spinal fusions and was born with an immune deficiency called Common Variable Immunodeficiency. I have studied a tiny bit of genetics, found the 'broken genes' for that and for lupus. My father and his mother also had the immune deficiency, as proven by their medical records. I am the last of the immediate family, so maybe these experiences can help other people, allow me to be of some use before I kak off. LOL Having a sense of humor helps, too. I like to laugh at myself before other people get a chance to!
-
Like -
Helpful -
Hug
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