DIALYSIS...PLEASE EXPLAIN WHAT LIFE IS LIKE😟 - Kidney Disease

Kidney Disease

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DIALYSIS...PLEASE EXPLAIN WHAT LIFE IS LIKE😟

Scared-woman profile image

For those on dialysis....what's it like? I am so afraid for if that time ever comes....I want to live but I dont want to be miserable...... can you live life as usual or are you just to tired and sore all the time.....I have heard alot of horror stories and just need actual feedback..... I have been in stage 3a for maybe 12 yesrs....now my egfr has dropped from 50 to 40 in one year ....will see doc this week and get a referral to a neph doc. Never been a priority for my GP. so far no amount of protein in urine..... blood pressure pills will be started....been in denial for to long l

20 Replies

Hi Scared-woman,

My name is Oscarine and I started dialysisout of the blue, no so signs or symptoms when i was 17yo. I was pretty scary then for me and my family. Horrendous i would say. Twenty six years later, 2 transplants and al sorts of surgical procedures, I can honestly tell you that you can never be prepared enough for any chronic or terminal illness, you just got to take one day at a time, get acquainted with what is eating and give yourself a big dose a love each day you get up. It not gonna be easy but you can manage with it. Every patient is affected differently.

My only prayer for you is that you kidneys stabilise soon and that you'll never go on dialysis.

Take care and all the very best.

Dixidude39 profile image
Dixidude39 in reply to coaching

Thanks, Oscarine. Your book cover photo says it all. I assume most must go on dialysis much later in life than 17.

Hi. My husband is on dialysis and so far, living with someone like him is a combination of everything. You just have to take one day at a time.

Hi, I can understand your nervousness, but there really is no need to be nervous. There are three different types of treatments (1) transplant (2) hemodialysis (3) peritoneal dialysis. There is no cure...just treatments and each treatment has its own benefits and hardships; the “gold standard “ is a transplant; the benefit is other than popping a few pills a few times a day, your life is normal and you feel pretty good. The hardship is the cost of medications, even with insurance. Medicare will pay for them the first three years, after that it’s up to you and your private insurance, they are generally considered tier three or four drugs and very expensive. #2- hemodialysis can be done in center or at home. Your blood is taken out of your body and filtered through a machine, then back into your body. Hardship you must have a care partner, it cannot be done alone. You can also pull to much fluid off and this will make you feel weak; diet is VERY restrictive. #3-peritoneal dialysis is probably the easiest on your body, can be done with or without a machine. Hardship is it’s sugar water sitting on your abdomen. Enough said.

I have done all three and am currently on peritoneal dialysis. If you’re at 40% function you still have a way to go. Visit kidneyschool.org for some educational information. Also, request a visit with a renal dietician. When you get closer to needing dialysis, visit a dialysis center.

Dixidude39 profile image
Dixidude39 in reply to 3Kidneys

New learning. I'm CKD4 and just turned 80. I have original Medicare plus "medigap" to cover the remaining 20%. I do not have Part D because I get my Rx's from the VA. Didn't realize that Medicare only covers meds the first 3 years.

3Kidneys profile image
3Kidneys in reply to Dixidude39

I should have stated if you qualify for Medicare due to age, they will be covered. However if you are younger and do not qualify for Medicare due to age, your medications will end after three years. And I do believe you must have part D.

As for how I feel, I’m fine. I do pretty much whatever I want, I work full time. Occasionally I get a little tired, but you just learn to listen to body and rest as needed.

Bassetmommer profile image
BassetmommerNKF Ambassador

HI,

I highly recommend that you go to a class on dialysis and kidney disease. Every person is different so what you experience will be different. The good news is it is early on for you. You can do a lot to slow down the decline and in many cases, people have stayed at the same level for years. Diet is so important. If you can, see a renal dietician. Go to a class on diet. Read all you can on diet. This place is a great resource. There are many of us who have maintained their function just by lifestyle changes.

Let us know if we can help you with this.

KidneyCoach profile image
KidneyCoachNKF Ambassador

Well, I've been on dialysis nearly 18 years. I've done in-center, home hemodialysis and PD. I've not yet had a transplant. I can say with absolute certainty that home hemodialysis and PD are the least restrictive in terms of dietary and fluid. I worked full time for nearly 7 years during my first 10 on dialysis. I was a cashier at Walmart which is fairly demanding physically. I also continued to work after a life-threatening episode of sepsis and having both kidneys removed. Dialysis is tough but like any other chronic disease one can adapt and change to have it fit your lifestyle. In-center is the most difficult as they try to fit 168 hours of kidneys working into a 12 hr treatment week. Imagine that! When doing nocturnal home hemodialysis I was getting 48 hours of treatment per week, roughly four (4) times more than those in-center. I felt fantastic. I transitioned over to a different machine a year ago and its been tough but I manage well. Its all about taking control and self-managing your health "well". Take a kidney class through fresenius.com, davita and go to kidneyschool.org. Education is the key to eliminating fear.

I was certain I'd never make it through the needle part. I allowed the fear to build up inside. In the end the fear is debilitating and unnecessary. Educating yourself is the key. It wasn't even close to devastating as I thought it would be.

I continue to work each tax season and I have done loads of volunteering with NKF, AAKP, Network, NCC-Subject Matter Expert, HDU BOD and more. I've traveled all over for pleasure and for volunteering as well. I continue to be active and busy. I'm now 61 and started dialysis at 43. If you set your mind to do something and prepare well you can do almost anything. If you have specific questions please feel free to send a message directly to me.

Wishing you all the best. Blessings, Amy

Thank you for the info......you seem to be doing great...did you say you have no kidneys at all? Not sure I am that strong

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Scared-woman

Yes I had both diseased kidneys removed in 2006. Strength is within us all. Just let it be seen. Blessings

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Scared-woman

Correct no kidneys at all. It's 14 years since removal. I'm still kickin it. Blessings

itzmich profile image
itzmich in reply to KidneyCoach

You are inspiring! Thank you so much for sharing. I've read alot about the options and have been so fearful and depressed. It's nice to hear that you are kickin it! You are amazing.

Very helpful response! Thanks for sharing a little more about your personal journey with CKD. This is certainly encouraging for all of us🐶

Jayhawker

Rene70 profile image
Rene70 in reply to KidneyCoach

Amy I just read your post.. It has helped me! I am 48 yrs old with stage 5 kidney failure creatine 11.2 and GFR 4 %...

I am scared! "Not on dialysis yet" my doctor is monitoring me twice a week with blood drawn and labs. I remember praying and asking God to send me a donor. My fiance got tested! The donor transplant told him that he was borderline cholesterol borderline diabetic never told him what he can do to get his numbers in order for him to transplant me they just gave up on him right away and I understand their protocols and procedures but he's not on any medication and he's healthy! I asked my son to go get tested he's dragging his feet I feel some kind of way I'm hurt, scared, going through a lot of depression. Needless to say I also take care of my 80 year old parents my father has dementia and my mother has congestive heart failure. I'm a walking miracle and pray for a donor. You just scared of a needles that I seen in the class her dialysis but I know I have to do what I have to do in order to live! This was a trying season for me people I thought that would be there for me is not! including my church family but God will see me through!

AnneEG profile image
AnneEG in reply to KidneyCoach

I've only just realised you are a female!

My husband had dialysis before his transplant . During dialysis and also after his transplant he found the kidney dietician at the transplant hospital to be extremely helpful. Learning about the types of dialysis available via the medical team and the dialysis classes will give you the information to choose the best method for you.

Hi, Scared-woman,

Like you, I am horrified of dialysis and the surgery done to your body to get dialysis. When I went for my free CKD DaVita class (I was the only one in the class and it was no more than a millennial showing me basic slides on her iPad and actually Googling answers to my CKD questions) we walked by the people getting dialysis treatments. They looked like Death warmed over (is that the saying?). This is what motivated me to get educated and take care of myself.

Here is what I accomplished: healthunlocked.com/nkf-ckd/....

I just had another set of labs done a couple of weeks ago and my creatinine was lower at 1.31 and my eGFR is 58 (it dropped by one point because I turned a year older in June). To me it is bizarre that your GFR would drop so dramatically in one year. I think it was a bad lab test, meaning you were not hydrated and/or had strenuous activity within the past 48 hours before your test.

I urge you to educate yourself and put in the work yourself. I did it, you can do it. The book is available on Amazon - read the Amazon reviews. Sorry I did not answer your actual question.

Dear Scared-woman,

First of all...Please DON'T be! Dialysis is, more than anything else, a 'Bind'.... Three times a week, allow five hours a session (four hours actually 'on' dialysis, weighing time, putting on/ taking off time and, a little, leeway in case of problems.) Yes it IS daunting and, I'm not sure, if you ever 'get used to it' but you WILL cope- if only because you have no viable choice. Most of the 'Scare Stories' are, with a few notable exceptions, just that Scare Stories. Yes, very occasionally, 'Things' do go wrong....Not Often and, all the 'Front Line Staff', are fully trained for these things.

Can I make a suggestion please? If you approach, the Renal Unit now, someone may, very well, offer to Talk to you- and answer your questions. You might even get a guided tour!

I'm assuming here that you are considering 'Hemo Dialysis', if you are having 'Peritoneal Dialysis', I'm afraid that I can't help you...Sorry.

Try NOT, to be, too 'Scared'..... Please do reply or, if you prefer, PM me.

Kindest wishes

AndrewT

Hello, I just wanted to say if you have been in stage 3 for that length of time I would be very pleased with that if it were me. If you can stay there for any length of time it would be to your advantage i would think? It has been so many years since I was in that stage. I am wondering how long stage 5 last so I understand wanting to know more.

Good luck, and God bless.

Hi, life on dialysis can be scary but if you get involved in your care and compliant with all the treatments and appointments, can lead almost a normal life...depends on you access, other co morbidities, e.g. diabetes, heart conditions, etc...your fluid allowance and diet also can be very important, but there are dietitians and your renal team that can advise. Good luck and take care.

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