@gingerw, many of us follow you regularly for your tremendously great advice on many topics, especially kidney disease. I know you started dialysis recently, and if you can share a little bit of what you are going through at this stage and why you chose the form of dialysis you are receiving now, I for one would appreciate it. I hope you feel today as well as can be under these circumstances. While many of us are in Stage 3 & 4 today, there remains that possibility that Stage 5 may soon follow for our future. You are such a gifted person who has helped me as well as others. Your journey of disesse has taken many forms and years, and you have been so proactive with your battle. If this is too personal, then there is no reason to share, and I apologize for asking.
@collegeprof Bless you! Thank you in advance for asking me to share. I am happy to share my story-to-date with everyone here.
In 2015 I was diagnosed with an ultra-rare kidney disease called Type III Collegenofibrotic Glomerulopathy, where collagen deposits are "plugging" the filtering components of both kidneys. Confirmed in 2015 by Keck USC and Cedars-Sinai in Los Angeles, and Arkana in 2019. This has been a progressive disease; they told me eventually dialysis would be the treatment. I was first aware of kidney issues in 2006 [eGFR was 70], that they had chalked up to a complication of my Systemic Lupus [diagnosed in 1988]. At that point i started following a renal diet, even though doctors didn't agree it was necessary. Being proactive in my health has always been paramount.
Forward to 2019 and I was diagnosed with multiple myeloma, a blood cancer, after advancing through the underlying stages in record time, overachiever that I am. These two conditions, kidney and blood cancer, are not related by the way, as confirmed by testing done. As my eGFR continued to drop to 12%, and chemo has been ongoing since August 2021, the toll on my body has been pretty rough. In Dec 2021 I had a fistula placed, as a back-up plan to upcoming dialysis. August 1, I had a peritoneal catheter placed, and started PD dialysis on Sept 12. Peritoneal dialysis is my first choice for several reasons. It is gentler on a person's system, and keeps the toxins normally pulled out by your kidneys, continually removed. Hemodialysis does that 3 times a week, which can create a rollercoaster effect, not beneficial in my situation. In order to maintain as consistent a level as possible, PD was the right choice for me. Not everyone wants that much involvement [it's a lot of work and oh my! the supplies!], nor can everyone successfully do it [abdominal issues from scar tissue, inadequate membrane, etc]. In my quest for quality of life, it was my best interest to start dialysis now, perhaps at a higher level of eGFR than others. I cannot be transplanted due to the myeloma, so this is my "new normal".
How do I feel? It will be a very slow road back to feeling more energy, and that is to be expected. Some days are better than others. There are definite differences in the dialysis modalities. I have fewer restrictions for fluid, and must constantly be thinking about eating quality protein. Appetite is not really there, so that is an issue. Again, this is my individual situation, but I am happy to answer questions. Yes, chemo continues, and my numbers there are slowly coming down. We are taking that very slowly, in order to not stress my body beyond what I can handle. I have a wonderful medical team, in communication with each other and me.
Ginger
@pamcaponio Welcome to Mayo Clinic Connect! Noone with chronic kidney disease is a wimp, yourself included! We each have our own battles, and path, and can learn from each other.
@eval930 Welcome to Mayo Clinic Connect! Stage 3 kidney disease can be many different things. Would you like to tell me some more about your situation, and we can answer your particular questions?
Ginger
@pamcaponio Welcome to Mayo Clinic Connect! Noone with chronic kidney disease is a wimp, yourself included! We each have our own battles, and path, and can learn from each other.
Thanks for asking Ginger…I am doing good. I have a very bad back from years of aerobics and running. My spine doctor decided to do an MRI and that’s how they found the malignant mass on my left kidney. I am thankful because I’m sure it would have killed me if not found. My doctor said 99% of full or partial nephrectomies are found while looking for something else… My surgery was one year ago tomorrow and I have had two clear CAT scans and I will see my doctor tomorrow and he will give me the results of a chest X-ray and Blood work. I have always been strong and taking care of relatives with cancer until their last breath but when it hit me I went to the dark side and I am on depression meds which help but I am a worrywart about every little pain. Listening to you and your strength lifts my spirits. i’m grateful for every day and would love to be able to change my thinking around about how lucky I am. Thanks again and have a good evening.
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@collegeprof Bless you! Thank you in advance for asking me to share. I am happy to share my story-to-date with everyone here.
In 2015 I was diagnosed with an ultra-rare kidney disease called Type III Collegenofibrotic Glomerulopathy, where collagen deposits are "plugging" the filtering components of both kidneys. Confirmed in 2015 by Keck USC and Cedars-Sinai in Los Angeles, and Arkana in 2019. This has been a progressive disease; they told me eventually dialysis would be the treatment. I was first aware of kidney issues in 2006 [eGFR was 70], that they had chalked up to a complication of my Systemic Lupus [diagnosed in 1988]. At that point i started following a renal diet, even though doctors didn't agree it was necessary. Being proactive in my health has always been paramount.
Forward to 2019 and I was diagnosed with multiple myeloma, a blood cancer, after advancing through the underlying stages in record time, overachiever that I am. These two conditions, kidney and blood cancer, are not related by the way, as confirmed by testing done. As my eGFR continued to drop to 12%, and chemo has been ongoing since August 2021, the toll on my body has been pretty rough. In Dec 2021 I had a fistula placed, as a back-up plan to upcoming dialysis. August 1, I had a peritoneal catheter placed, and started PD dialysis on Sept 12. Peritoneal dialysis is my first choice for several reasons. It is gentler on a person's system, and keeps the toxins normally pulled out by your kidneys, continually removed. Hemodialysis does that 3 times a week, which can create a rollercoaster effect, not beneficial in my situation. In order to maintain as consistent a level as possible, PD was the right choice for me. Not everyone wants that much involvement [it's a lot of work and oh my! the supplies!], nor can everyone successfully do it [abdominal issues from scar tissue, inadequate membrane, etc]. In my quest for quality of life, it was my best interest to start dialysis now, perhaps at a higher level of eGFR than others. I cannot be transplanted due to the myeloma, so this is my "new normal".
How do I feel? It will be a very slow road back to feeling more energy, and that is to be expected. Some days are better than others. There are definite differences in the dialysis modalities. I have fewer restrictions for fluid, and must constantly be thinking about eating quality protein. Appetite is not really there, so that is an issue. Again, this is my individual situation, but I am happy to answer questions. Yes, chemo continues, and my numbers there are slowly coming down. We are taking that very slowly, in order to not stress my body beyond what I can handle. I have a wonderful medical team, in communication with each other and me.
Ginger
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8 ReactionsBless you Ginger warrior. Thank you for all the info you provide. I am such a wimp compared to you. You give me strength. Rock on. ❤️
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3 ReactionsI am in stage 3 kidney fauiler what can you do to help me
@pamcaponio Welcome to Mayo Clinic Connect! Noone with chronic kidney disease is a wimp, yourself included! We each have our own battles, and path, and can learn from each other.
How are you doing today?
Ginger
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1 Reaction@eval930 Welcome to Mayo Clinic Connect! Stage 3 kidney disease can be many different things. Would you like to tell me some more about your situation, and we can answer your particular questions?
Ginger
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1 ReactionMy eGFR was down to 38 and through walking, exercise and measuring my food I have brought my no from 38 to 47
@eval930 Good for you! Being proactive in your kidney journey has given you the benefit of better health!
What in particular have you found was difficult to do, to make changes, and what was easy?
Ginger
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1 ReactionThanks for asking Ginger…I am doing good. I have a very bad back from years of aerobics and running. My spine doctor decided to do an MRI and that’s how they found the malignant mass on my left kidney. I am thankful because I’m sure it would have killed me if not found. My doctor said 99% of full or partial nephrectomies are found while looking for something else… My surgery was one year ago tomorrow and I have had two clear CAT scans and I will see my doctor tomorrow and he will give me the results of a chest X-ray and Blood work. I have always been strong and taking care of relatives with cancer until their last breath but when it hit me I went to the dark side and I am on depression meds which help but I am a worrywart about every little pain. Listening to you and your strength lifts my spirits. i’m grateful for every day and would love to be able to change my thinking around about how lucky I am. Thanks again and have a good evening.