How bad did it get.

[jambo101]

How bad did the symptoms of kidney failure get before you started dialysis and how soon after starting dialysis did you feel much better?

Thanks

[iolaire]

I never got as bad as you describe, but I napped a lot less after starting dialysis.  Pre dialysis on the weekends I could almost get up, have breakfast and then in a bit want a nap, but workdays I worked normal days.

I've not commented on most of your posts, but based on what I've read (each time), I’ve wonder if it’s not time for you to start?  My nephrologist always said I'd know when it’s time to start dialysis, and that the labs only mean so much, everyone is different.  Obviously starting dialysis is a big change, but if you feel like crap there is a good chance that you will feel better.

I also believe that having a bit of kidney function might help as you start dialysis.  For example if you are still peeing it gives you some time to learn about the fluid restrictions and prepare for the day when have to control fluid (and diet).

Good luck.

[Simon Dog]

My MD tells me that starting Hemo as late as possible has the best long-term outcome, but that patients can benefit from starting PD somewhat earlier as it helps preserve residual renal function (whereas HD tends to kill off residual function)..

I remember puking on the LV strip after breakfast when I was on PD but it was starting to fail me.

[fightingPKD]

Late to this party, but FWIW, I'm not going on dialysis until I absolutely have no choice.
I'm planning home hemo (I don't think perio is an option for me for health reasons).

I'm currently in stage 4 now but other than occasional bouts of very real fatigue (sometimes lasting days - again, unusual but I had a bout a month ago), and uncommon lower leg cramping, I'm in pretty solid shape. 
Staying active - walking 10k steps a day, doing yoga once/twice a week, weightlifting three times a week. I've been fighting my own demise for years, squeezing all the quality of life I can out of my body.

[Michelle2016]

Hi, fightingPKD:

Your story or experience is really inspiring.  I was in your shoes 20 years ago. But at that time I didn’t have enough education or internet to grab the information. I was very panic and did nothing, did 2 year dialysis, desperately just waiting for kidney transplant. Now I’m addicted to exercise. I spend at least 3 hours exercises if I’m not work. Exercises help me overcome depression and anxiety.

Keep fighting. Best wishes.

[fightingPKD]

Hi, fightingPKD:

Your story or experience is really inspiring.  I was in your shoes 20 years ago. But at that time I didn’t have enough education or internet to grab the information. I was very panic and did nothing, did 2 year dialysis, desperately just waiting for kidney transplant. Now I’m addicted to exercise. I spend at least 3 hours exercises if I’m not work. Exercises help me overcome depression and anxiety.

Keep fighting. Best wishes.

Thank you so much!  If I can motivate anyone on this sub then I am happy to do so.  One thing we're all in common - we're all in a fight we didn't ask for.

Yeah, the funny thing about the steps. I only walk. I don't do cardio (running joke with my wife, who also lifts with me), but it actually started 3 months ago in an attempt to lose some weight. Not a lot, mind you - I just snuck up to 175 lbs over the holidays and auto-pilot diet wasn't working. Mid-March I decided to ramp up my light cardio and dial back my alcohol consumption (which wasn't massive, but sometimes, I'd have a drink 4-5 nights a week).  I wanted to get down to 165, which I feel is the best weight for me (I've been lighter, but I just don't look good).  Basically losing weight by mostly ramping up calorie burning.  This is a particularly good way for women to lose weight since they are always working with less calories for maintenance to begin with - generally 400-600 calories less than a man at the same age and weight.

As to why no cardio, it's because I just can't do both, I do have real recovery limitations. I push myself really hard and I feel it's honestly benefitted me, but I AM 46, and as fit as I may be, there are hard limits that can only be pushed so much, so often.

Anyhow, about 3 months in, and it's working as planned. I weighed 168 last week.  4-5 more pounds to go then I'll settle in, keep the walking up and go a little easier on my eating/drinking.

[fightingPKD]

Just an update:  I was formally put on the list Monday.

Still trying to do all the activity I said 6 months ago, but it's been tougher the past couple weeks.  Combination of holidays and needing naps to keep going.  Walking and yoga still happening. Lifting reduced, hopefully this is just temporary.

[kristina]

How bad did the symptoms of kidney failure get before you started dialysis and how soon after starting dialysis did you feel much better?

Thanks

Please don't wait too long and please listen to your body and instinct to figure out when it is time ... and please don't wait too long ...
... I might have waited a little too long, but I was still hoping that my kidneys could pick-up again as they did in 1971, but, of course, they did not pick up again, as the disease had almost made them vanish ...
One doctor told me later, that the longer one waits, the longer it takes for dialysis/transplant to recover the body as well as can be.
In my case it happened that as soon as I was put on dialysis, I felt instantly better, but that might have been down to my great relief that dialysis was not as bad as I had anticipated and feared.
Good luck and best wishes from Kristina.

[Paul]

I didn't feel to bad. Legs were the size of tree trunks, I got tired easily, and out of breath if I walked more than a short distance, but I felt OK otherwise. However I was obviously in a bad way, because they fitted the tubes for HD on a Tuesday, and the plan was to start dialysing the following Thursday (two days later). But before the operation (procedure?) to fit the tubes they took a blood test. Afterwards the surgeon told me to go directly to the dialysis unit immediately, and they would fit me into the next session. This was because my blood work results were so bad, she thought I might die before Thursday. The moral of this story is: Don't wait until you feel bad enough to think you need dialysis, because before you reach that point you may be dead.

[fightingPKD]

Thanks for the advice.

I just see dialysis as the end. There's no going back from it physically.  I shudder to think of what I'm going to be like then. It's depressing.  The idea of having yet another hole put inside of me for the sake of survival - I'm just not sure.
 
I'm most likely going the Kristina route and waiting until my body just doesn't function anymore.  Workouts are back to something resembling normal though, pulled 2 sets of 250 for 8 reps and felt good.  Not going to stop fighting.

Hope you guys have a Happy New Year.

[kristina]

Thanks for the advice.

I just see dialysis as the end. There's no going back from it physically.  I shudder to think of what I'm going to be like then. It's depressing.  The idea of having yet another hole put inside of me for the sake of survival - I'm just not sure.
 
I'm most likely going the Kristina route and waiting until my body just doesn't function anymore.  Workouts are back to something resembling normal though, pulled 2 sets of 250 for 8 reps and felt good.  Not going to stop fighting.

Hope you guys have a Happy New Year.

Hello again and please don't take my route as an example, because you and I are completely different medical cases !

Please consider this fact at all times and please think about it in a very serious way ! Please !!

For example : I suffered complete kidney failure in the early 70's because of an underlying disease and so it came that I was found unconscious in a coma with total kidney failure and after a long time in hospital (without dialysis) my kidneys recovered well enough for me to carry on with my education.
When again I "entered" kidney failure in 2014, I was hoping to repeat the same experience as in the early 70's and it was that hope that made me to wait so long with dialysis-treatments... Can you see the difference of our medical cases? Please do !
And most importantly : Had I decided to face dialysis-treatments earlier, I might have been put on the transplant-waiting-list earlier as well. As it was, my body had become quite fragile by my waiting and I needed dialysis-treatments to get myself fit enough to be put on the kidney-transplant-waiting list.
I could write so much more but please re-consider your decision and please re-think !
 
There are painless ways to be put on dialysis like my chest-access. No pain, except for the first moment during the operation when the surgeon put my chest-access in its proper place. After that there was no more pain at all and all I had to do was to forget about having a bath in order to protect my chest-access.

What is wrong with that? And ... what is wrong with finding ways to continue living?

Please re-think !!! Dialysis is not the end, it is only another way to continue live for the time being until the transplant. .. And if not ... don't forget how many years people like our kitkatz here have continued living whilst they have been on dialysis!
Please re-think again. It makes me feel completely terrible right now to think that you could be doing the same as I did when my medical case is so different and I honestly was living in hope to have the same good luck as I had in the 70's, which of course, was stretching it a bit.
Please do me a favour and please re-think again and please take great care in 2020.
From dialysis-friend Kristina.

[fightingPKD]

Indeed, we are totally different cases. I'm not fragile (physically) - perhaps psychologically at this point.

Seriously though, what good is life if you're going to be unhappy with the state of it?  That's what I struggle with.  I've spent my entire adulthood with a positive self image, and this PKD is turning me into someone else I barely recognize when I look in the mirror. Every few months my kidney function drops just a little bit more - it's like impending doom.  Even with a transplant I'm going to be on a battery of meds I have to take in a timely manner for the rest of my life.

I honestly begin to question if it's all worth the trouble.  Ridiculous medical expenses, for what kind of existence?

Sorry if this rubs anyone the wrong way - I'm not looking to insult anyone or their personal decisions.  I just look at my future at 46 and it looks mediocre at best. It's just not enough for me to live for the sake of my family.  Not really.  Without a real sense of self I'm just grumpy all the time.  Weightlifting, drinking, and gaming. That's all that's left of my leisure life.  It's a small amount compared to 15 years ago.

[kristina]

Indeed, we are totally different cases. I'm not fragile (physically) - perhaps psychologically at this point.

Seriously though, what good is life if you're going to be unhappy with the state of it?  That's what I struggle with.  I've spent my entire adulthood with a positive self image, and this PKD is turning me into someone else I barely recognize when I look in the mirror. Every few months my kidney function drops just a little bit more - it's like impending doom.  Even with a transplant I'm going to be on a battery of meds I have to take in a timely manner for the rest of my life.

I honestly begin to question if it's all worth the trouble.  Ridiculous medical expenses, for what kind of existence?

Sorry if this rubs anyone the wrong way - I'm not looking to insult anyone or their personal decisions.  I just look at my future at 46 and it looks mediocre at best. It's just not enough for me to live for the sake of my family.  Not really.  Without a real sense of self I'm just grumpy all the time.  Weightlifting, drinking, and gaming. That's all that's left of my leisure life.  It's a small amount compared to 15 years ago.

Hello again ... and ... please feel assured that you don't "rub anyone the wrong way", here on IHD, all of us here are in kidney trouble one way or another and we understand and are trying to assist each other as much as we can as patients ourselves and being in slow or sudden kidney failure is in any case very difficult to deal with, physically and/or emotionally and we certainly understand the difficulties.

... And you are right, everyone decides for themselves, what is best for them and we are all different in our ways and we also come from different backgrounds, but just to mention : whilst being on dialysis there are still many "things" to discover and do and there are also many different "things" to chose from. How about getting into the history of weightlifting etc.?
I wish you good luck and all the best from Kristina.

[kristina]

P.S.

I have just looked-up the word "gaming" and apparently there are quite a few different meanings :

i.e. gambling money away and/or manipulate (a situation), typically in a way that is unfair or unscrupulous to others, and/or as a financier "gaming the market" ....

... which one did you mean ?

Thanks from Kristina.

[Simon Dog]

Perhaps "gaming" in this context means playing games - literally.

[kristina]

Perhaps "gaming" in this context means playing games - literally.

Many thanks Simon for the kind explanation and I send you my good-luck-wishes for 2020 from Kristina.

[fightingPKD]

Perhaps "gaming" in this context means playing games - literally.

It means both athletics and video gaming.

My life since high school has been a bit of a paradox. 30 years later, it's somewhat debatable if I've ever, really grown up   Before weightlifting was actual sports - tennis and ice hockey.  Later on post PKD I played some rec soccer and I coached youth soccer for five years.
Weightlifting is a thing now because I decided I'm better off improving my overall quality of life instead of babying my remaining kidney and allowing the rest of my body to atrophy.

I started with one kidney left at 50% function at 31.  Now I'm down to 16-17% at almost 47.  My diet has been good as far as 'kidney friendly' - potassium is my constant struggle mostly. Blood pressure is OK.  However, physically, I push myself hard. Not absurdly hard, but hard and consistent.

Weightlifting/Exercise has become the only crutch these past ten years or so that I could look in the mirror and see some semblance of who I believe I am. Despite the scar that goes from the top of my abdomen to my groin.

I guess the biggest mental struggle with this disease is that the average person just thinks yeah you struggle, but you can get a transplant and life's all better.  From what I see, that's only mostly true.  There is no real endpoint for any of us. It's like cancer that way.  I think that's the real source of hopelessness I have to repress from time to time. Every bad workout reminds me of 'the end', so to speak.  Every good workout means I feel better about the fight.

[Simon Dog]

There is no real endpoint for any of us.

Actually, there is 

[lulu836]

I have not been able to post in this forum for a few days because I have been in a local hospital Intensive Care Unit recovering from complications of fluid overload among other things. I say this in all sincerity do not give up. After I got out of intensive care yesterday I will be in rehab for approximately 3 weeks. The experience of being given the opportunity to actually give up was almost taken by me. Lying there on the ER table waiting for death to overtake me I could see myself in my imagination struggling to raise my head to let someone know that I was still here. It sounds very dramatic but it is not meant to be dramatic. The only reason the very only reason I share this is to let you know that letting go is not the thing to do. You need to fight. You need to find other things to do. You need to channel your energies in finding ways to get better. You have not been allowed to continue on this Earth because you have been considered a quitter. You are still here because you are considered to be a fighter. Join the fight!

[MooseMom]

Oh, lulu!  I will remember your post for a very long time!  That must have been such a frightening experience for you, and I am very glad that you are still with us.

Thank you so much for posting.  Your words are very wise!   

[kristina]

Hello Lulu and many thanks for your wise thoughts. I send you all the best good-luck-wishes for 2020 and hopefully all goes well for you in rehab. You are right, it is quite a fight and sometimes it goes a bit easier and sometimes it is a bit more difficult, but it is well worth it ! Good luck !
Take great care and see you soon and best wishes from Kristina. 

[lulu836]

Oh, lulu!  I will remember your post for a very long time!  That must have been such a frightening experience for you, and I am very glad that you are still with us.

Thank you so much for posting.  Your words are very wise!   

moose mom thank you for your thoughts. I hesitated posting all of that because in some cases it sounds way too awful to have actually happened. But happen it did and in many ways it has been a very beneficial experience for me. Again, thank you for your reply and very happy New Year to you and yours.

[MooseMom]

lulu, while I'd never want you to "relive" such a bad experience by posting about it on IHD, I'm glad you decided to do so because 1. sometime it can sort of "wash" bad memories away to some degree, and 2. other members and/or lurkers can learn a lot from you words and take them to heart.

"Thanks for sharing" sounds so trite, but with all sincerity, thank you for sharing.

[Alexysis]

Getting back to the original question; "How bad did it get?"

In my case, I knew my kidneys were failing for years. I was even getting regular GFR tests, so I knew. It was about May when I lost my job when the company started to fail. Had been on limited hours for months, and upon losing my health insurance, I couldn't afford to purchase outside insurance, so I took the first job that came along, which was a mistake that lasted only 3 months. Looked for work for the next 3 months, found another job at a less-than desirable company, hoping to make it the required 3 months before insurance kicked in. It had been 6 months since my last GFR test showed me at 11. I worked as hard as I could, but barely had enough energy to make it through the day. Probably had to pee a dozen times a day, too. And the headaches from my elevated potassium level made it difficult to concentrate. My work suffered, and I was let go just before getting insurance. I was broke, went to Social Services, and went on MedicAid and unemployment. Got a GFR test; I was at 6, my potassium level was so high my nephroligist had me take Kalaxotate(sp?) to purge me, and had me start dialysis the next Wednesday. I was severely anemic, was 6'3" and only weighed 160 lbs. Could barely get up, and slept about 10 hours a day.

After a month on dialysis, I noticed that I was feeling better. Kept eating well and doing mild exercise. After 8 months, I was feeling healthy and more-or-less energetic, so I decided to look for work. Since then, I've worked full-time most of the time, taking what few jobs I could find with the scheduling constraints my thrice-weekly dialysis treatments allowed. Some were temp, some were just crappy, but at least I've stayed employed. The job I finally found looks like it will keep me busy until I can retire at age 62 and get social-security benefits rather than disability benefits.

[Simon Dog]

age 62 and get social-security benefits rather than disability benefits.

An interesting technicality is that if you transition to SS from SSD benefits, you get to keep the higher disability benefit.   Something to consider as going against the "wait until later to collect the higher amount" - not only do we have shorter life expectancies, but get off SSD and transition from no benefit to SS and you get a lower amount.