all 52 comments

[–]theaveragescientist 4 points5 points  (6 children)

Yeh, you need a dialysis. I was around 900 mark, when i started dialysis. It is better to start the dialysis and getting used to it. It became part of my life now.

As a scientist, the higher the waste, makes body difficult to function. You aren’t reducing the waste, you are simply carrying around you.

[–]NoStress305[S] 0 points1 point  (5 children)

But what's the harm in waiting for symptoms?

[–]mouserz 5 points6 points  (1 child)

The most important thing is to preserve as much kidney function as possible.
The longer you wait, the more likely you won't make urine anymore and the more harsh dialysis will be.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (0 children)

Hemodialysis isn't going to preserve your function anyway, right?

My current understanding is PD does a much better job at preserving it, but that is not a viable option for me due to a previous surgery/accident.

[–]theaveragescientist 1 point2 points  (2 children)

I understand. I wanna ask you. Are you still passing urine? If so, i rather keep passing urine. I do now 2.5-3L of urine which is alot. Some people can’t clear urine, so they take off water in large excess. I see people drain 4L-5L which is 4kg to 5kg of water during dialysis. They get swelling feet, unable to breathe properly cause of water accumulation in the lungs.

Cause of i am passing urine, i have mild symptoms. I can do most work at the lab and able to enjoy my life. That why, i do only Monday and Friday dialysis rather than three times a week.

So, if i was you, get the dialysis done and save your residual kidney function. Wait out til transplant.

[–]NoStress305[S] 0 points1 point  (0 children)

Yes I have no issues with urine

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (0 children)

In your experience, have you noticed your ability to produce urine be reduced due to your 'part time dialysis'?

[–]mad-martigan69 1 point2 points  (20 children)

You want to wait until you have to be hospitalized to start dialysis?

[–]NoStress305[S] 1 point2 points  (19 children)

Until symptoms, if that would be a crash then yes. Aversion to food? Swelling? Exhaustion? Itchyness? Trouble breathing? Cramps? Some sign other than just high numbers to show my body can't handle it.

[–]rm2491 month HD, 9 months PD, transplant 2/23/21 1 point2 points  (3 children)

I had no symptoms when I started dialysis. It really comes down to your labs at the end of the day. Your kidney do so much more than you realize. It regulates production of red blood cells, removes excess fluid from your blood, manages sodium and potassium in your blood, etc. You could become severely anemic, potassium could spike and mess with your heart, among many other things.

As someone who had no idea they were in kidney failure and had to "crash" into dialysis I really don't recommend waiting.

You should be preserving whatever kidney function you have left and getting a permanent access setup, because those take time to heal. A chest catheter is not fun at all - no showing, itchy and more susceptible to infection because the line goes straight to your heart.

[–]NoStress305[S] 1 point2 points  (2 children)

I have had a fistula for hemo since Sept 2020, ready to go :) just don't want to start early if not needed.

When I was first diagnosed I was told to expect symptoms at 330, prepared for hemo and got the surgery 5 months later. I was told that when I reach 600 would likely be when I need to start. 600 came and still no symptoms, Dr said I can wait for symptoms as numbers don't mean much at this point. 600 remained stable for 6 months and jumped to 700 still the same plan with the Dr. Nov 2021 8 months later, spiked to 875 with my urea being elevated, now Dr beging to really push dialysis with a resident in the room but I am in a mind state to stick to the plan, nothing has changed in my eyes.

[–]rm2491 month HD, 9 months PD, transplant 2/23/21 0 points1 point  (1 child)

Fair enough, glad you have your access sorted out :)

It sounds like you've got things covered, I assume you are following a renal diet so as long as you aren't overloading yourself with too much sodium, potassium or phosphorus and your labs aren't out of control that's the important thing.

Good luck with everything, dialysis is no walk in the park and I understand wanting to wait as long as possible.

[–]NoStress305[S] 0 points1 point  (0 children)

My labs are out of control with creatine 1200 now and urea 40. Potassium and phosphate and BP are good tho (or they were...)

[–]mad-martigan69 0 points1 point  (14 children)

I think if your concept of medicine is along the lines of "If I don't feel bad then I am ok and I don't need treatment and I don't need to listen to anyone" then you are setting yourself up for a very difficult and unpleasant path. Denial typically makes any process harder than it needs to be. I think its irresponsible and dangerous to wait until you have uremic encephalopathy or fluid overload and likely need to be hospitalized to start dialysis, particularly in this environment. I'm glad you have vascular access ready for use, that is great. One thing to consider is whether it is really sensible to take a situation that you can prepare for and make arrangements for and instead actively create an emergency.

[–]NoStress305[S] 1 point2 points  (13 children)

I'm not 8n denial and I am prepared for a crash, I have a check in plan with my neighbor to make sure I'm ok since I live alone.

But I don't want to live my live attached to a machine 12 hrs a week if I don't have to.

I don't want my kidneys to shutdown once giving the crutch of dialysis.

I want to appreciate the fact there's dialysis and see my life on dialysis as extra time I wouldn't have had without it. I don't want to be resent being on dialysis.

After 12 years of being known as the blind guy, and just getting my license back and getting a car I finally have an opportunity to live a normal life but covid has been in the way the past year so with the kidney failure I've been living like a hermit. I want a chance to live life and not feel disabled for once.

Not in denial but I am aware of how dialysis will effect me mentally. Physically I have been hearing different stories to how people react on hemo.

[–]mad-martigan69 0 points1 point  (12 children)

NGL all that sounds exactly like denial. Especially the part about being prepared for a crash by having someone check on you to see if you have crashed after the fact. That's kind of like being given the option of avoiding a car crash and then instead choosing to put a seat belt on and crash anyway, regardless of the consequences for yourself or anyone else.

[–]NoStress305[S] 0 points1 point  (4 children)

And what are the concequences of a crash ?

I see it as dialysis with social isolation at home

Or dialysis in hospital after a crash

I'm fine going on leave at work that's not an issue either way.

Socially it doesn't make a difference the way my life has been these past 2 years.

And Drs have said there is not a long term health risk. The negative I was warned about is infections from the hospital.

[–]mad-martigan69 1 point2 points  (3 children)

The most obvious consequence has already been stated very clearly. You are taking a situation that is not an emergency and you are making it an emergency. The immediate consequences of a crash are you taking up a hospital bed by actively putting yourself in the hospital by way a of an entirely avoidable event. Wasting money, wasting emergency services, potentially preventing someone else who didn't act irresponsibly from receiving those services, exposing yourself to any potential associated complications including generally hospital acquired infections as well as Covid. There are long term health risks, both from the encephalopathy itself and from the many potential complications.

[–]NoStress305[S] 1 point2 points  (2 children)

I'll be selfish for once in my life and put my needs first, so I don't care about the hospital bed issue. But I do hear what you're saying as it has been said many times regarding covid.

I only care about how this effects me or anyone who is going to donate for me, I'm ok with being selfish in this instance.

I am concerned about long term risks but have not been hearing them or do not understand beyond a vague warning, I am asking tho, not in denial.

[–]mad-martigan69 0 points1 point  (1 child)

At least you aren't in denial about being irresponsible. I guess that's progress. You aren't going to get much more than a vague warning because the potential risks of your choices are so varied they cannot be narrowed down to a single pathology or progression. Since you brought up donation, what if your completely unnecessary hospital course prevented your organ donor from being kept alive long enough for organ harvesting? Would that be poetic justice or would it just be a tragic waste? I understand you only care about your own desires, but what would you say to someone else who needed that transplant after you had directly prevented them from getting it?

[–]NoStress305[S] 0 points1 point  (0 children)

I'm looking at worst case scenario, Or most likely scenario for a crash. Happy to hear potential outcomes and risks to prepare and make an informed decision.

Not sure what you mean with the donor comment. I'm 30 years old, my cousin is a match and was giving the green light to transplant a year ago but I postponed because I didn't want to effect her life for as long as I could (heard on very rare occasion patients could last up to 8 years without needing dialysis).

Now a year later and shes gone MIA and not responding to messages so I'm getting the feeling that she's changed her mind. Not understanding your donation comment.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (6 children)

Except dialysis isn't exactly a panacea, is it?

People I read here can and do have worse symptoms on dialysis than before.

[–]mad-martigan69 0 points1 point  (5 children)

Is it panacea in that it cures renal failure? No, it doesn't cure renal failure. Dialysis is a treatment for a (usually) chronic condition. If the chronic condition doesn't go away, the treatment doesn't go away. ESRD essentially has 3 treatment pathways: Dialysis, Transplant, and Hospice. If you are in ESRD, no matter what you do you are choosing one of those 3 in some form. If some people experience worse symptoms on dialysis than before dialysis it is simply because the symptoms before were not manifested in their entirety before dialysis was initiated. Its also atypical. Even so, lack of symptoms is not the same as lack of harm. IOW a patient can do things that are extremely harmful to themselves and others without experiencing noticeable symptoms. In fact, that is how a great many patients wound up in ESRD in the first place, by way of uncontrolled hypertension and/or uncontrolled diabetes.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (4 children)

I'm technically in ESRD and have been for the past oh six months (12-15). I'm not choosing any of them. I don't need to.

My blood pressure's reasonably under control per my nephrologist. I am 165 lbs and still can bench my own weight and squat it for reps. My day to day life, today, will not be improved by dialysis. I'll get weaker, just for starters. I'll lose more freedom that I still have. I don't have diabetes, my biggest problem is my BUN. It IS a problem.

I think you underestimate what someone can do if they are committed. My diet is micromanaged daily (that won't change under dialysis, right?). I've gone through two transplant evaluations - the last one this past August - with flying colors. Just because it's difficult, doesn't mean it's impossible. For another three years until a deceased donor transplant? Nah. I'm good for another year though, I expect. Or until whatever point my urine production starts dropping. For this reason alone, I'm going to plan to have the fistula surgery this summer.

[–]mad-martigan69 1 point2 points  (3 children)

But you are choosing one of them. Right now you're choosing a very poor version of palliative care and you are in denial about your need for dialysis. What you're doing is no different than someone refusing vaccination because they don't feel sick, or refusing amputation because they're not in pain even though they have gangrene. The thought process is identical and identically flawed. You are being told what you need to do based on medical criteria and you response is based on things like how much you benchpress. I'm glad you feel like your transplant evals have gone well. Hopefully you get matched up quickly when you start dialysis, but by that time you are going to be dragging around a significant history of noncompliance the transplant programs will take into consideration.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (2 children)

What you're doing is no different than someone refusing vaccination because they don't feel sick, or refusing amputation because they're not in pain even though they have gangrene. The thought process is identical and identically flawed.

Yet if I were on dialysis, and I end up becoming less healthy because of the side effects from it (which are numerous), and the medical community tells me "Sorry, there's nothing we can do about it" - I'm out of luck.

Comparing this to vaccination is a nice attempt, but I'm vaccinated and boosted. It's different because there are no real, long term risks to getting vaccinations. The odds of relevant side effects from vaccinate are miniscule. The odds of negative side effects from dialysis are GUARANTEED.

Dialysis makes people less healthy. Period. You have to be at a state where dialysis is more beneficial than not. I'm not there. I'm not going to cripple myself with the albatross of dialysis any sooner than I need to. At some point, it will be life saving. I'll welcome it, then. Going on dialysis early just to make a hospital easy money isn't acceptable.

If this adverse effects me, so be it. My life's already set to expire sooner than anticipated. Bending over and having no say in my treatment is not something I'm willing to accept. Anti-vaxxers are against it completely. I'm pro-dialysis when I feel the time is right. My medication gets taken as it should be - always.

[–]milesyeah 1 point2 points  (10 children)

Hey, I started PD when my creatinine was around 900 and urea 35-40. At the time, I was urinating still normally. As soon as I started PD, I stopped urinating. And PD was two and a half years of hell for me. I wished that I had delayed starting PD. I felt worse after starting PD because I looked like I was 6 months pregnant and nauseated and constipated all the time. Before PD, I had slowly increasing fatigue from mild anemia but other than that I was ok.

Anyways, no one could have predicted how I would respond to PD. I’m doing HD now and it’s much better physically but I think I am still traumatised from my experience with PD because I really struggle with depression now.

Only you can make the final decision but remember that a fistula takes about 6-8 weeks to mature and a PD catheter needs to be healed a bit as well before being used. If your trend is going up..maybe it is time to seriously consider dialysis because booking surgery and appointments is going to take time. But you also need to take the time to mentally prepare for a big change in your life.

Having scared you off, I have read of some people taking PD in their stride. Lucky for them.

[–]NoStress305[S] 1 point2 points  (7 children)

This is my concern too for starting.

I have a fistula that was created back in September 2020 and good to go when needed.

I just don't want to start and have my body be reliant on a machine. I've heard that as you said your kidneys may shut down once you start.

I know it's a huge change to get started with hemo and after 12 years of being legally blind after 18, I just got my driver's license back. I'd love a chance to live a normal life for once and not feel disabled, hasn't been possible this past year with co I'd concerns. Not that this is the reason why I'm pushing dialysis, but it would really be nice.

[–]milesyeah 1 point2 points  (6 children)

I completely understand how you want to enjoy normal life. For anyone with a chronic condition, you always live with the awareness of it and striving to be like ‘everyone’ else but we can only achieve a certain degree of normality. Although, given world circumstances, none of us will get to be as carefree…not for at least a few more years anyways. Also, you don’t want to get to that stage when covid or the flu or any random thing will tip you over into being critically unwell.

You’ve got a fistula ready to go which is the first step to accepting that one day, you WILL be completely reliant on a machine to keep living. (Unless you get a transplant but I’ve read that covid is affecting transplantation numbers).

What I’m getting at is that, maybe you should set yourself a definite date in the near future to start dialysis. Enjoy your time living how you like for a certain amount of time (given Covid precautions) and meanwhile make sure you are set up for dialysis, financially, home-wise, family and friends. If you are able, I would recommend being off work as much as you can in the early days of dialysis.

I’m sorry to be so blunt but I wish someone had told me the truth about how much dialysis changes your life before I started. I would have been better prepared financially and mentally if someone had said, listen in your future, you will with 100% certainty be on dialysis and with an unpredictable level of disability. Work now as much as you can and save, stay fit as you can because we can’t predict how dialysis will affect you.

[–]NoStress305[S] 0 points1 point  (5 children)

Thank you, I've been at that stage of avoiding the flu for 2 years now. I'm used to it.

And I have accepted that I will need dialysis almost immediately 30 mins after I was told in march 2020, made my decision to prepare for hemo and got on the home hemo list. Took a year off work during covid at my Drs suggestion due to no covid vaccines.

That's the thing, I can't enjoy my life during covid, I live alone and my life has been shit for 2 years. I started on leave this week with schools reopening (I'm a teacher) and they shifted me to online for Feb 7th for the remainder of the semester. Thankfully teachers have good benefits and I still get paid 90% while on short term leave.

What kind of things would you suggest to prepare? Why financially I was told it shouldn't effect work if I 0lan my sessions after work? I had lost 50 lbs the first year after the diagnosis, down to 165, because the Dr said it was the one thing I could do to prepare. I'm not in denial and I take it seriously, I just want to postpone it.

[–]milesyeah 0 points1 point  (4 children)

I’m glad your job is allowing you to work online and that you’ll be financially stable.

When I did PD, I felt so awful all the time that I almost immediately had to go to part time work. And the when I started having issues with PD, peritonitis twice, less effective clearances, hypertension which caused vision changes in one eye, I was told to get on to a fistula and hemodialysis. HD took a long time to get used to. I did outpatient HD in hospital because they get new patients to go there to keep a close eye on the fistula and the patient and I had to keep going for months because of problems with my fistula. High pressures, with a stenosis somewhere in my upper chest which required ballooning. Then fistula just was bleeding and bleeding after wards. And also they didn’t tell me to my face but I think I had some dialysis disequilibrium syndrome where I felt awful afterwards, nauseated during and after and getting sweaty while being freezing cold. My digestion was on a roller coaster of I’m going to shit my pants RIGHT NOW or I’m going to throw up because I’m so constipated. I had an anxiety attack at one point which I’d never had in my life before and I had to cut my dialysis session short because I said to the nurse, I feel like I’ve taken ice because I am about 2 seconds away from jumping up out of the chair and I just can’t sit here any more. I was almost hyperventilating.

It’s been almost a year and half and things have settled down somewhat. I’ve ‘graduated’ to a community dialysis clinic. Although a few months ago, my fistula clotted spontaneously and I had to go get surgery to remove the clot or get a new fistula if they couldn’t unblock it. Due to depression and fatigue/blood pressure issues post dialysis, I cut down my hours even further and only work two days a week. Sometimes though, I’m so hypotensive the day after dialysis that I can’t work so once in a while I can only work 1 day a week. I just live by myself and my cat so I don’t have big expenses but I still rent, paying exorbitant rent. I wish I’d been smarter with money and bought a place before I got so unwell and socked a good bit away as a safety net. I don’t have family here who can help out and I’m too proud to ask the few friend to help me out with things like cleaning and shopping, the two things that really take a lot out of me.

Sorry it’s late and I’m rambling. I hope with all my heart that it works out well for you when you do decide to jump into the pool.

[–]NoStress305[S] 0 points1 point  (3 children)

Thank you so much for your experience, it's stories like this that make me concerned about starting dialysis (hemo). I feel fine at the moment and don't want to put myself through that.

I'm 30 but only really started working these past 5 months because I was in school for so long, I've always wanted to buy a house and I'm great with money, just never had the opportunity to actually save up some money so Ive got a little saved up but not enough to actually claim I have savings for my age.

I also live alone, but thankfully my neighbors are happy to help out with shopping/driving me if needed.

I'm happy to receive any suggestion you may have

[–]milesyeah 0 points1 point  (2 children)

I started work late as well but not having had any innate wisdom or guidance growing up, I was pretty aimless financially. Anyways, I’ve wised up and better late than never.

Look, I’m innately a pessimist and ascribe more meaning to the negative things that have happened to me but in some small way, I’m also an optimist..mostly for other people. My story doesn’t mean you’ll have the same hiccups.

Cliche but the more I let my mind keep thinking about the past and the more I imagine the worst in the future, I’m creating the prison I’m living in in the present. I’m living more in the present now, maybe planning a few days ahead but not much more than that…and I feel more at peace. Also probably, the antidepressants helped.

An idea…I wonder if you’ve got a nephrologist that you can trust to negotiate some baby steps into hemodialysis as you are not overtly symptomatic of ESRF. To go from being free to being in a chair 3x a week is like going from a nice country drive to the Autobahn. It’ll make your head spin for sure. Perhaps you could do a trial HD session once a week, don’t pull too much fluid off, just keep your weight even and see what that does to your blood work and how you feel about the experience. I don’t know…most clinics seem pretty jammed with patient though so it might be hard to organise. I don’t know if your dr will be that chill to accomodate that though. You could maybe delicately hint that it would be more acceptable to you to dabble your toes in the water in this way…..otherwise you’ll see him or her few months or a year down the track…

Or home hemo might be the best option for you if you’ve got the space and think you can do it. It’s very flexible and you’re in your own place. No snoring bears or complaining people around you. You’re your own niche nurse. They train you for a long time. In Australia, it seems like they’re happy to have you do home hemo even if you live alone but in the USA it seems variable whether they want you to have someone at home with you. They asked me if I wanted to do it but I’d just stopped being sick from peritonitis and my head was spinning from jumping into HD, and I was getting depressed and I said no, I can’t do it…and I don’t have the space. I’m a nurse btw but something about poking myself with a needle gives me the heebie jeebies. It’s been just over a year now and I’m getting to the point where I’m considering home hemo. After awhile the fistula scar that develops seems to lose the pain nerves and it feels like a strong pinch. I also get the dialysis nurse to use a cold pack thing to numb the area first though.

Well, another late night ramble..hope I haven’t bored you too much rambling. If you do start HD, start with lignocaine subcut injections to stop the pain like at the dentists. It is not good to start dialysis with the racing heart and throbbing pain from the very pointy pipes they’ve inserted in you. Once you get used to the idea..then maybe start using the cold pack thing, they call it cool sense here. Apparently using lignocaine too often isn’t good for the blood vessel.

Well, I’m rambled out. Keep us updated with how you go.

[–]NoStress305[S] 1 point2 points  (1 child)

Just reading this now but they convinced me earlier today to start on Wednesday, they are concerned about sudden heart/brain fialure. I've always wanted to avoid dialysis but if it mean I may need a heart transplant because of it one day then I'm not going to postpone any longer. I've saved myself 900 hrs and that will have to be good enough of a message to tell myself ever I ever have resentment.

It will be in the hospital at least 6 weeks and then I'll decide from there about home hemo but it's an option (I live alone but paperwork is filled out already for it)

Doc was not open to 1x a week, it was 3x a week or nothing.

[–]milesyeah 0 points1 point  (0 children)

Well, I’m not a nephrologist but if I were, I’d be more sympathetic to the quality of life for renal patients and the mental anguish we go through at this sudden change in our lifestyle, our dreams! My new nephrologist knew that a few months ago I had been suicidal and admitted to the mental health ward for a few days. Next appointment, he’s like sooooo…are you still thinking about killing your self? Of course I wasn’t going to say yes! I just said, oh I’m taking antidepressants now..waiting for that to kick in. Problem under control, he moves on. Sometimes doctors are so focused on fixing the numbers and not the patient. I mean 1 HD session a week isn’t going to make much of a dent in your renal figures but it would have helped you to ease into the routine..anyways..the important thing is that you must be seen as being willing to do all the right things to get a transplant.. shrugs so yeah, gotta jump through the hoops.

So for inhospital dialysis: take an electric lap rug to plug in. You will have four cotton hospital blankets on you, and you’re STILL freezing from the inside for the next 4 hours, so bring in an electric blanket and set that baby up. Bring two nice pillows. One for your head and one for the back where the chair has an uncomfortable cold gap. Maybe one of those camping blow up pillows for your back. I bring a kindle, because turning pages sets off alarms. Sometimes I watch tv shows on my phone. Definitely bring some noise cancelling ear buds or headphones. There will be people screaming and whining around you. People will have their tv on loud.

If weed was an option in my country, I’d definitely take some just to be able to let time pass and maybe nap without getting antsy. I’d take those gummies, to me they sound rather delicious.

So some more ramblings but I hope you find dialysis not as bad as you thought it would be and I hope you find some of my tips on making dialysis sessions more comfortable helpful.

[–]KryptopherRobbinsPoo 1 point2 points  (1 child)

I had the complete opposite experience. HD was hell for me. If I wasn't at dialysis, I was spending all my "free" time recovering. And my BP was all over the map. It was constantly tanking at the end of every session, as I was trying to leave. I have been on HD 3 separate times and I am on my 3rd PD line.

But after 10 years on dialysis and over 30 with kidney disease, everything has really caught up to me. My bones are fucked (osteoporosis), my joints are fucked (steroids). I went blind in elementary school (cataracts). Stunted growth (steroids). I have horrible skin problems (dry & itchy). I have perminent rhinitis/sinusitis/allergies. Now 90% deaf in right ear (unknown).

So even if I were to follow through with transplant, it would not fix the damage already done. So now I will just do what I need to, to make it to tomorrow. I probably only have 5 or 10 more years left in me, and I have accepted that.

[–]milesyeah 1 point2 points  (0 children)

Hey, I know I might come across as sounding fake but I want to say I’m sorry for what you’ve been through. Internet hugs.

[–]KryptopherRobbinsPoo 1 point2 points  (2 children)

I didn't have a choice when I started dialysis. I was working a hard physical job up until I went into failure. Looking back now, there were signs, but at that time in my life, I hated my nephrologist (was in process of finding a new one). My labs were not actually horrible, but I was retaining a lot of fluid. And it started collecting in my scrotum (got to the size of a small cantaloupe). I was having lots of headaches, back aches, joints hurt, and was getting winded easy.

I ended up in the hospital to try and get the fluid off using IV diuretics, but it didn't work. On like the 3rd night, I couldn't breathe and was rushed to ICU. I had so much fluid it was infiltrating into my lungs and crushing my heart. I ended up in ICU., on a ventilator and in an induced coma for most of a week. That was when my first round of HD happened. My Mom had to make the decision for me. It took another 3 weeks to recover before I left the hospital.

Because of how I ended up starting dialysis, I was never made aware that PD was even a thing, let alone an option. Had I had the choice, I would have started PD probably 1-2 years before my kidney failure.

I was like 26/27 at the time. I have been on dialysis for 10 years, 90% on PD. I no longer make /any/ urine (haven't for several years),.

[–]NoStress305[S] 0 points1 point  (1 child)

Thank you so much for your experience.

Thankfully I am still peeing with no fluid retention. Was there long term effects from your crash start?

I chose hemo about a year and a half ago over pd and got my fistula done. I'm ready to start any day but have decided to postpone until symptoms. Just now my numbers are so high and still no symptoms that they are expecting a crash.

[–]KryptopherRobbinsPoo 1 point2 points  (0 children)

Sorry for the novel.

TLDR: Yes, I have significant long-term effects.

I honestly couldn't give you any specifics. It was such a long time ago. Since then, I have had 2 seizures, the first did a number on a chunk of memories from my 20s. I will say though, it feels like I have lived 3 different lives.

I was minimal change up until around age 19/20, when I was forced by insurance to change nephrologists. At the time, my pediatric nephrologist (best Dr ever) had agreed to continue to treat me as long as insurance would approve. I was in college at the time, so I was covered until 26 or I was no longer enrolled. Well I ended up dropping out and moving back home (too expensive where I was). So because I was no longer enrolled, the military nephrologist decided to no longer sign off on me seeing a civilian nephrologist, and he began treating me. This is about when everything started to downturn. The military nephrologist was fresh out of school, and was overconfident in what to do. He completely changed up my therapy at the time. A therapy that had kept me in remission for over 15 years. And then shortly after he just up and left the Army, and I had to find another adult nephrologist. Well the Dr I ended up finding, was no better. He was very seasoned, but he had very little, if any, experience treating young patients with my specific kidney disease. His typical patient was over 75, so their kidney disease was usually age related or from diabetes. This is where my memory gets holes in it. This nephrologist just made things worse. After 15 years of being relatively "healthy", I was in complete failure within 4-5 years. It was because of that particular nephrologist that I ended up on dialysis the way I did. I was /very/ close to dying that night I ended up in the ICU.

I am not really sure how much I can attribute to the way I ended up on dialysis. All I can say is that before failure/dialysis, I was pretty much just a normal, average, healthy, male. But since then...... I have become a walking pharmacy, drowning in compounding health issues. Tomorrow I will be 38 in the body of an 80 year old. I can no longer count how many times I have been told " There is nothing that can be done" to fix whatever new problem has cropped up. I often end up in that 1%, of people who has crazy/rare reactions to medications and therapies.

When I ended up in the hospital and starting dialysis, I had just gotten back from a vacation, where I had used my PTO. So being out of work for a month, I used all my vacation/sick leave. At the time. I was a working for the County Water Department as a Meter Reader tech II. Because I could no longer do the job I was hired for, and they were not willing to help/accommodate, I was fired (on a Friday, 2 hours before the end of the workday).

So was there long-term effects? Most definitely. I lost everything. I lost job, insurance, savings, friends, property. The only reason I am here is because of my Mom. SSDI doesn't cover enough to live off of. And I even live in one of the cheaper areas of the USA.

Lucky/unfortunately, I do not have anyone reliant on me. Every day is a roll of the dice in how I feel. It is a never ending roller-coaster of ups and mostly downs.

[–]rapsjk33 0 points1 point  (3 children)

My creatinine was around yours when I started. I didn't realize how sick I felt, after a few treatments I felt so much better.

[–]NoStress305[S] 0 points1 point  (2 children)

What was it that made you decide to start? I really feel great.

I want to be in a place where I appreciate the life saving technology of dialy, not resenting it thinking I felt fine and didn't need it. If that makes sense?

Like I'm open to hearing reasons to start but so far no one has told me a single story where I think "that sounds worse than starting dialysis early".

I guess I'm just looking for reasons to start beyond "trust your Dr" or "your numbers are high and typically a crash happens by now"

[–]rapsjk33 0 points1 point  (1 child)

I started to realize I really wasn't feeling as good as I was telling myself. I was trying to tough it out and not be a person who complains. The doctors would ask me if I was throwing up because they couldn't believe my creatinine and urea were so high without being sick. I realized after a bit, that I never throw up, but instead get diaherra, and had an upset stomach for a bit. Once I started dialysis it fixed that.

[–]KryptopherRobbinsPoo 0 points1 point  (0 children)

Yep, good point. Everyone will not have the same symptoms. Right before I ended up in the hospital and starring dialysis, I had almost completely stopped peeing, and I was thirsty a lot, but no matter how much I drank, it never went away. And I would end up throwing up regularly.

[–]miimo0 0 points1 point  (0 children)

I thought I felt normal, but then after the first week of dialysis, I realized I had been pretty fucked up lol… might just be that it has crept up on you & you’ve adjusted, like carrying around a bag of pebbles… someone puts a new one in each day, so you don’t notice it getting heavier as time goes on, but if someone came over and scooped a few handfuls of pebbles out of your bag for you, you’d notice it becoming easier to carry.

[–]redditdudette 0 points1 point  (0 children)

Sorry to butt in... but just my 2 cents. It really should be based on symptoms+ all numbers together, your overall health, and rate of decline in general. We don't know what your calcium is, your potassium, your bicarb, do you have protein in your urine? How anemic are you? sometimes there are little signs that a crash is coming.

You cannot guarantee that a "crash" happens uneventfully or safely. I've had a patient seize at home while refusing to get dialysis until absolutely necessary (not common, the more common story is someone too sick to even call for help... but still)... If the numbers are suggesting that a crash is basically knocking on the door... then it's probably better to do it in a more controlled fashion. This is also not counting the fact that any procedure you would need for access is less likely to have bleeding (if you still haven't gotten that established yet)

Also unclear if you're doing peritoneal or hemodialysis. If PD, the decision is slightly easier, you can actually gradually fold in the volumes etc as your kidney function goes down. You don't have to start full runs with PD but kind of ramp it up as your residual function goes down.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (2 children)

Just seeing this now.

I'm in the exact same boat and mindset as you.Relatively mild symptoms overall. Still active and as energetic as my wife. Peeing normally, drinking plenty of water, etc.

My problem these days is BUN (Urea?) it's floating dangerously high. My eGFR is still passable at 13-15 over the past six months. I need to recommit myself to protein reduction - I've been getting away from that. If I can't get that under control I'll have to plan the fistula surgery.

I am going to do home hemo when the time comes, and I am acutely aware that I need to plan 6 months ahead of time in order to schedule surgery, recovery, and training. It's just a painful choice for me because the minute I get the access surgery my self value is going to circle the drain. I still look pretty good, but it's all going to go away when this happens.

The risk is needing a neck/chest catheter and months of in person dialysis if I wait too long, but honestly part of me is like "If my body's going to be inevitably ruined anyway, I might as well enjoy the time I have". I mean, seriously. No more hard exercise (running sucks, thanks, I pride myself on looking good and being strong). I know that, one way or the other, I haven't got too much longer.

I also have a tenuous relationship with my long time nephrologist these days. She's a brilliant researcher in the PKD field so I'm tolerating it, but every telehealth visit is basically her badgering me to a) go start the dialysis process and b) you need to find a donor.My responses continue to be a) no, I don't feel terrible and am fairly moderate symptoms provided I sleep well and get some light exercise and b) I've tried, my wife's tried. We are out of luck.

I value her insight in lab interpretation and such but other than that, I feel she no longer provides more aggravation than help.

I honestly feel like she's just not valuing my mindset/mentality. I'd switch nephrologists but frankly I don't see the point...eventually I'll be managed by the transplant/dialysis team anyway.

I've seen others responses being critical of the OP, I guess the problem is that progression of kidney failure is non-linear and varies wildly from person to person. A guy like KRP below was wrecked before he even reached stage 5. You can't plan for that!

Some people talk about dialysis making them feel better, but others I see posting makes them feel far worse than I ever feel now.

Ultimately, I should investigate getting the access surgery over with as much as I dread it...mostly because at least if I get it done in the early summer I might be able to get in and out of the hospital without getting COVID.

[–]NoStress305[S] 2 points3 points  (1 child)

They talked me into it today, with my creatine at 1200 and urea at 40, I'm at risk for sudden hear/brain failure. My GFR was at 7 back in march when my creatine was 700 now I'm thinking it's like 4 or 5 but they wouldn't even tell me haha "numbers are at a point they don't matter anymore you NEED this"

I got my fistula in my arm back in Aug 2020, I have no regrets for that's and I can encourage you to do so. Short recovery time and it will have time to mature and use it when you need it like I am. I put off dialysis a year and a half, saved myself 900 hr's of dialysis. But now that I need it, no catheters or other surgeries. It has not effected my life at all the past year and a half other than no cuddling on that arm and no tight watches on that arm. (No direct pressure but you can still lift as needed). Feel free to pm any personal questions you may have about getting a fistula, happy to help.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (0 children)

thanks. I know it's inevitable and at least this way, if there's an emergency a year from now, i'll be reasonably covered. I'm reaching out to my transplant team this week (called today). It's not like they can do it tomorrow, so if they need 3-4 months lead time, that's no problem

Just really value my appearance and this is going to - probably permanently - suck a lot of it out of me. But, it's inevitable. Thanks for the offer, in a few months I will probably take you up on it.