Is anyone here using Dialysis

Tom 86

Tom 86

Senior Member
Location
Indiana
I just got my blood test back & also an email from my kidney Dr. he wants to have a long talk with me Monday because my RBC is low, My glucose is high (don't have diabetes so far) Also my CKD is 30

Could you explain how it affects you?
 

Sassycakes said:
I was wondering the same thing. I have stage 4 kidney failure and dialysis is in the near future. Maybe someone who has information about dialysis will chime in.
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I'm stage 3 right now. I was given some gel to rub on my knee by my P.C. Dr. He knows I'm stage 3. Told me to put on disposable gloves when rubbing it into my knee about 2 weeks ago.

Looking at my B.T. of 10-20 on My Chart it looks like the ?? in it put me in stage 4. I see my kidney Dr tomorrow (Monday). I got an email from his nurse saying the Dr wants to sit down & have a long talk with you, so be prepared for at least an hr meeting not the usual 20 minutes.

Once before this spring when I had to have "contrast" for a cat scan of my lungs, he gave them the OK to do it but afterward to run 4 of the huge bags of saline fluid through my IV full bore to wash out my kidneys.

We had a talk last year when my CKD went low, he said I "might" have to go on Dialysis for a short time to relieve my kidneys & they can heal some. He said I'll never get to stage 2. But a stage 3 with some rest would help.

I've been reading on kidney places that if you can do the in-home it's just better for you. As you can do it a few hrs. every day more junk is filtered out than the 3 times a week.
 

Sassycakes​

Just got back from my Kidney Dr. He was not happy with my B.T. Said I'm 2 numbers from going into Stage 4 CKD. He sat there for about 40 minutes or longer explaining what Stage 4 was. Told me to NEVER use anything with Ibuprofen, Motrin, Alleve, Advil, or Naproxin. If you do you will end up with Dialysis.

My P.C. Dr. gave me a cream for my right knee to relieve the pain it worked great but it had some Ibuprofen in it. It dropped my CKD from 48 three months ago down to 30. It was being absorbed through my skin into my bloodstream.

He gave me a list of fluids I can drink & NOT drink. Said he will allow me one cup of regular or Decaf coffee or tea in the mornings. after that do NOT drink anything that has a color in it, as it's hard for the kidneys to filter out the coloring.
Said to drink, water or water with lemon, 7 up, sprite, anything clear. NO alcohol at all not even a sip of wine. Limit your fluid intake to 40 to 48 oz a day.

I got to go back in a month to see if my numbers go back up as they did after the cat scan with the Coan-19 hospital stay If not I might have to go on temporary Dialysis.

He explained a little on that but he said if my kidneys fail I can do home Dialysis as they have small units not that allow you to even travel, but for me maybe just a few weeks here in our hemodialysis office next door. I would have it 3 times a week for 3 weeks then off 4 weeks to see if my kidneys will recover after some rest.

Hope this helps.
 
I’m curious about modern dialysis and also interested in understanding how the kidney disease progresses if you choose to do nothing.

I knew two people that had good results with home dialysis but storing the supplies and disposing of the waste from the treatments was difficult.

I had a close friend that went to a dialysis center three times a week and it was very difficult for him but he refused to change his behavior and was eventually rejected for a transplant because of it.

I think there is a good possibility that I will have to face these decisions as my diabetes progresses.
 
@Tom 86

Just got back from my Kidney Dr. He was not happy with my B.T. Said I'm 2 numbers from going into Stage 4 CKD. He sat there for about 40 minutes or longer explaining what Stage 4 was. Told me to NEVER use anything with Ibuprofen, Motrin, Alleve, Advil, or Naproxin. If you do you will end up with Dialysis.

Then, what can you take for pain?
I'm sorry you're going through this :(
 
Pinky said:
@Tom 86

Then, what can you take for pain?
I'm sorry you're going through this :(
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Tylenol only, unless I want to go on low-powered control drugs like Tramadol 50 mg. Tylenol no more than 3,000 mg a day.

The orthopedic surgeon thinks I have something torn in my right knee as I have so much pain in it. Will find out more tomorrow as I see her in the afternoon. She said Insurance is holding up a lot of things she wants to try.
 
Dunno how I missed this back in October. I worked in dialysis (registered dietitian) for nine years. I left the field in 2007...a few years before portable hemodialysis machines came into use. That would be my choice. I wouldn't want a transplant.
 
AnnieA said:
Dunno how I missed this back in October. I worked in dialysis (registered dietitian) for nine years. I left the field in 2007...a few years before portable hemodialysis machines came into use. That would be my choice. I wouldn't want a transplant.
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I had a transplant lasted 22 years! Ready for my next. I’m about to turn 60. Dialysis is rough.
 
I have extensive experience working in dialysis. My advice to new prospective dialysis recipients is this:
There are lots of educational materials online. Google and read about the different modalities, dialysis is not one size fits all. When you THINK you know which modality would work for you, speak with your doctor, find out which dialysis units he prefers in your area.

Then set up appointment(s) to meet with someone there. Maybe the in-center nurse manager or administrator, maybe the home hemodialysis manager, or the peritoneal dialysis nurse. Hopefully they would have a patient education program.

There are pros & cons to each modality. However, much depends on your lifestyle, home situation and personal preference.

Please do not be the person who postpones dialysis and ends up as an emergent dialysis patient in the ER. Those patients are so sick that many do not do well for a long, long time.

Learn, ask questions, visit dialysis centers, decide which modality you would like. Then find out from your doctor if your chosen modality is right for you. For example, if you have had certain, or multiple abdominal surgeries, peritoneal dialysis might not be right for you.
 
Kika said:
Please do not be the person who postpones dialysis and ends up as an emergent dialysis patient in the ER. Those patients are so sick that many do not do well for a long, long time.
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Quoting for truth! Uremic toxins produced when kidneys are not clearing waste properly are just that ...toxins... and negatively impact the whole body including brain impairment, muscle function, nutritional status and more when dialysis is put off too long; these debilitating issues don't reverse quickly once dialysis is started. This can happen when at end stage even with urine output. Lab values determine when dialysis should begin.
 
There are Nephrologists that will provide pre dialysis care. It took me awhile to find one in my state, a lot of them wouldn’t take me until I needed dialysis. They are the best ones to determine when to start dialysis.
 
Jan14 said:
There are Nephrologists that will provide pre dialysis care. It took me awhile to find one in my state, a lot of them wouldn’t take me until I needed dialysis. They are the best ones to determine when to start dialysis.
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That's awful that you had to search. :( What we called pre-dialysis "conservative management clinic" was my favorite work as a dietitian. We saw people early and I was able to help motivated people with diabetes and hypertension to make lifestyle changes that sometimes halted progression of their renal failure. To have someone stop by my office and say "Dr. White said since I changed my lifestyle, I don't have to come back unless my primary provider sees lab changes." ranks up there as some of the times of greatest joy in my life.
 
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AnnieA said:
That's awful that you had to search. :( What we called pre-dialysis "conservative management clinic" was my favorite work as a dietitian. We saw people early and I was able to help people with diabetes and hypertension to make lifestyle changes that sometimes halted progression of their renal failure. To have someone stop by my office and say "Dr. White said since I changed my lifestyle, I don't have to come back unless my primary provider sees lab changes." ranks up there as some of the times of greatest joy in my life.
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My kidney started failing shortly after Covid started. That may have had something to do with it. After changing my insurance I was able to find a local Doc and I love my Dialysis Clinic. I felt I was in the wilderness for awhile. It was a scary time.
 
AnnieA said:
negatively impact the whole body including brain impairment, muscle function, nutritional status and more when dialysis is put off too long; these debilitating issues don't reverse quickly once dialysis is started. This can happen when at end stage even with urine output. Lab values determine when dialysis should begin.W
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Well said! So True! RDs (Registered Dietitian) are so important in pre-dialysis education as well as monitoring the nutritional status after starting dialysis.

I was always under the impression that a nephrologist should be following a patient, along with other specialists, when the creatinine reaches 2. But I'm sure there are shortages in some areas of the country where that might not be feasible. It really is sad.
 
I was shocked and so hard to process during a time that I was so ill. God saw me through it and led me to the right Doctor and clinic. I feel so much better. Just waiting for a kidney now. Dialysis has its ups and downs but it has improved thru the years. There are different types also.
 
AnnieA said:
Dunno how I missed this back in October. I worked in dialysis (registered dietitian) for nine years. I left the field in 2007...a few years before portable hemodialysis machines came into use. That would be my choice. I wouldn't want a transplant.
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I missed this too...I don't know how,..but Tom, I'm sorry you're going through all of this.. and I'm sorry that I can't be of any help to you... but I wish you everything you wish for yourself ongoing...🤗
 
I had to cancel my Kidney Dr. appt when I went into the hospital. They kept taking blood from me every 4 hrs. The nurse said there is something in your blood we watch that's created with your aspired pneumonia. I ask her what my Kidney readings were?

She said my kidney numbers are improving from when you had your last bloodwork at the kidney Dr. When I got out of the hospital I called the kidney Dr. & his nurse said he was watching my number while I was in the hospital & don't need to come in to see him till May.

He set me up with a dietitian a few years back. She gave me all kinds of booklets & hospital online videos. She was great in explaining all the different foods I can & can't eat. She said you can have one cheat day every 2 weeks. As I love Pizza, I got a small one every 2 weeks.

Now with this flapper in my throat, that let food into my lungs, I'm on a completely different diet. I'm doing the throat exercises & have a twice-weekly virtual visit with the Speech therapist to make sure I'm doing everything right. I know I NEVER want to go back into the hospital with Aspire pneumonia.
 
@Tom 86
You have been, and still are having such challenging times,
but you seem to be doing as good a job as a person can possibly do,
with each one of these situations, you have.

I have been hoping that your throat will continue to be improving more, enough to make eating, easier and more pleasurable for you, soon.
 

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