How bad did it get.

[Alexysis]

As long as I am working, I'm increasing my SS monthly payout. Also, you can actually work part-time without reducing your monthly check, unlike disability.

[MooseMom]

I'm glad you are able to work!  Makes life feel more secure.

[Simon Dog]

As long as I am working, I'm increasing my SS monthly payout. Also, you can actually work part-time without reducing your monthly check, unlike disability.

You can work part time on disability without losing eligibility, however, there is a monthly earning cap somewhere around $1K.

[Alexysis]

As long as I am working, I'm increasing my SS monthly payout. Also, you can actually work part-time without reducing your monthly check, unlike disability.

You can work part time on disability without losing eligibility, however, there is a monthly earning cap somewhere around $1K.

Yeah, but I've got an education, and frankly the extra earnings allowed ain't gonna cut it. Nobody seemed to be interested in PT work locally, except for low-paying service jobs, and working PT in my field would max me out after about 10 hours a week.

[Michael Murphy]

I retired on SSDisability when I was 62,  I didn’t loose any money since my Benifits were calculated as if I was 66, in other words my payments were not discounted for collecting 4 years early.  When I reached full retirement age I was moved to regular SSA Benifits, so there was no difference for me in working 4 more years or going out early.

[MooseMom]

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

Are you feeling any better?

[jambo101]

Yeah feeling better after a year of dialysis. a lot less water retention all over ,the itching is gone, blocked ears is gone,slightly more motivation, however the title of this forum (i hate dialysis)is an understatement..

[MooseMom]

Yeah feeling better after a year of dialysis. a lot less water retention all over ,the itching is gone, blocked ears is gone,slightly more motivation, however the title of this forum (i hate dialysis)is an understatement..

 

[fightingPKD]

It's funny.  I came back to read this thread tonight and I see I was posting on it a couple years ago.

So, the short update is I am STILL not on dialysis.  Diet/exercise/hydration/whatever I've managed to get by all this time.  Although my time is just about up - my last labs were OK except for that ugly eGFR 8.
I'm still functional day to day, I'm still lifting twice a week and walking 8-12k steps most days- getting in 15-20 miles a week outside.

I had a fistula installed this spring, it's ready.

I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester.  It'll be easier for her to manage me through the transition at the start of next year...

[Simon Dog]

I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester.  It'll be easier for her to manage me through the transition at the start of next year...

It does not have to be your "one last time" visiting your brother for Thanksgiving.

Whether you are on the DIY home dialysis program or use in-center, it is easy to book appointments nearly anywhere in the US when you travel.  The is generally taken care of by the staff at your dialysis center, and they arrange for transfer of the medical/insurance records.   If you do home dialysis with blunt needles, I suggest bringing your own when traveling since I encountered one clinic that did not keep them in stock - it fact, the entire staff surrounded my chair to watch as they had never seen a patient self cannulate before.    (Very rural clinic)

[fightingPKD]

I know you CAN, but it seems like a tremendous pain in the ass for all parties involved. 
Travel has already been a massive nuisance for me the past few years due to having to lead a high-maintenance health life as it is.  Micro-managing my day-to-day life to stay healthy seems (and has been when I've done it, I've traveled a good bit this summer) absolutely exhausting to do away from home.


"If you do home dialysis with blunt needles, I suggest bringing your own when traveling since I encountered one clinic that did not keep them in stock "

Thanks for this tip!

[kristina]

It's funny.  I came back to read this thread tonight and I see I was posting on it a couple years ago.

So, the short update is I am STILL not on dialysis.  Diet/exercise/hydration/whatever I've managed to get by all this time.  Although my time is just about up - my last labs were OK except for that ugly eGFR 8.
I'm still functional day to day, I'm still lifting twice a week and walking 8-12k steps most days- getting in 15-20 miles a week outside.

I had a fistula installed this spring, it's ready.

I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester.  It'll be easier for her to manage me through the transition at the start of next year...

Hello and I congratulate you to your success and I am very glad for your diet & exercise etc. to work so well in order for you to avoid dialysis.
But please have a quiet word with your friends & family etc.  to check-up and make sure that your “grey-cells” are still serving well and give you their very best? I only mention this because “in my case” for example, I was quite sure that my “grey cells” were still functioning perfectly well, but my husband noticed, that my “grey cells” were not quite at their usual knife-sharp-best anymore before I started with dialysis-treatments ...
Please take great care and I wish you the best of luck from Kristina.

[Simon Dog]

I know you CAN, but it seems like a tremendous pain in the ass for all parties involved.

Not really, except for chasing the insurance dunning letters when your carrier screws up the out of town treatments.   My record is two years to get my insurance to pay for two treatments in Texas.

The actual mechanics are easy - Tell your clinic where you want to go and when.  Either they can find you a clinic, or you can go online and locate the most convenient one (my approach), and ask your clinic to book that one.   The clinic can cross-register between companies (I used Fresenius, but was occasionally booked at a DaVita).   If you do DIY dialysis, you still have a "home clinic" for support.   I never had a problem with my appointment at a travel clinic, and they were always expecting me.  I would sometimes drive to the clinic the day ahead to make sure I know how to get there.

There is no generally additional cost to you having dialysis at another center.  (Easy enough to check).   Private pre-medicare insurance may limit the number of days per year (I think I had a 30 day limit, not sure, only traveled about 15 days per year)

You get a printout with your appointment info, show up 15 minutes ahead of time for your appointment, and everything is just like a local treatment from there.   I was on D for 6 years 3 months and 5 days and did dozens of "on the road treatments".

When I traveled on PD, I had lots of bags of solution pre-shipped to the hotel.   Some hotels (all the Las Vegas biggies) run package receiving as a business and charge by size and weight to receive (as if you were shipping the package) amounting to $20 a box or so.    I found Las Vegas hotels were very accommodating when I asked for the PIC (person in charge) and requested a waiver of the fees for medical supplies .... but I still tipped the bellman who delivered them, so I suppose that was an additional cost.

In my case, I was determined to control the process to the extent possible, not let it control me.   I did home PD (Peritoneal for 6 months then hemo when it failed), and traveled dozens of times.  The first few trips were on PD and I took the machine (fits in airline overhead and counts as 0 bags and 0 carry ons) and had supplies shipped.   It is possible to travel with NxStage but that approach fits you definition of "too much pain in the ass" since the machine and case weigh 99lbs and the case does not have wheels.

Don't brush off "travel dialysis", especially if it enables you to attend family get togethers.   If you give it a try once you will then be qualified to judge if it is worth the hassle.  You may be pleasantly surprised.

[UkrainianTracksuit]

Hey fightingPKD,

Just want to give my kudos that you remain so active on such little function. That's so great!

Got a question for you about the fistula. How do you find that it "feels" or not feel during your weight training? Besides the dead fistula or two, I've got an unfinished one that I need to "preserve for the future" growing and buzzing. I want to finally get back into biathlon but just giving pause due to the weight training.

*And hey, I know the feeling of looking at the long journey of it all with CKD. I've been through the mill with this disease, not even 40 yet, and some days wonder what in the actual F I am doing.

[iolaire]

I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester.  It'll be easier for her to manage me through the transition at the start of next year...

Hi, I've not gone back to read your intro post so sorry if you answered this already... Are you already listed for transplant?  You can do it prior to starting dialysis and get credit on the wait list while you are able to manage yourself pre dialysis. 

Regarding travel hopefully your energy levels and overall lifestyle will improve a bit with dialysis.  You might find you are better off lifestyle wise once treatments start and your blood receives extra filtering to remove toxins that you have to deal with now.  Assuming you are US based its fairly simple to setup treatments in the US.  But regardless, you might see a bit of a pickup once dialysis starts.

[fightingPKD]

Thanks for all the responses and thoughts!

Simon: As far as dialysis and improving my quality of life - that's the thing. I'm not at all convinced it will.  I'm convinced it'll be worse. 
My present understanding is that it improves your kidney function to roughly eGFR 15-20.  It wasn't that long ago I was there, and I only feel marginally worse now.  The biggest thing is fatigue beginning to set in.   Not 'life fatigue' as much as it it 'cardio fatigue'.  I just saw my neph yesterday morning, and she's on the 6th floor of a building.  I opted to climb the stairs - just to see if I could.  I was absolutely gassed/winded by the top but I DID make it.  The thing is, people will tell you the average person with full kidneys/health won't be able to do this, so...

I just know far too many people (and younger) who the process of dialysis has literally worn them out.  I was in a dialysis gamer discord for a few weeks earlier this year.  Everyone younger than me (which is sad, in itself as I'm about to turn 50). 
The people who reliably have told me that dialysis improved their life were the ones who generally experienced life-altering fatigue, inability to hold food down (or lack of desire to eat), nausea, or other awful symptoms.

If I start dialysis, my dietary restrictions don't improve.  I get protein consumption back, and I lose fluid consumption.  The rest is a wash.  Besides, every day I am holding off is one less day my wife has to help hook me up to a hemo device (we're going to do home hemo).

I guess I just don't see the point in traveling on dialysis if I'm not going to actually enjoy myself, you know?   Travel someplace all day, dialyze the next morning, be worn out afterwards, and to do what? lay around a different place half the day? still have to have restricted eating, drinking, and so on?  I just don't understand, other than doing it for other people - not myself.  I suppose IF I end up handling dialysis better than most people I know of, it could be a different story.


kristina  One of the recurring issues I've had throughout my kidney failure experience (throughout the years) is being told my 'grey matter' decline is normal.  Pretty much all of my 'decline' is considered normal from a 30 year old me to the nearly 50 year old me now.  It's one big mindf*ck if I'm being honest.  I do know, for sure, that I had a really bad stretch early this year mentally.  My blood chemistry was worse than right now.  eGFR was still in the 12-14 range but my blood was very acidic and my blood pressure was out of control due to the sodium bicarb tablets I was given to try and improve my blood CO2.  I was admitted to the hospital overnight in late March due to a potassium spike.  Due to this, the doctors came up with a new blood pressure management protocol - along with implementing liquid sodium citrate, instead of bicarb - that has alleviated these issues since.  Even my phos isn't tragic at this point (5.4-5.8 range).

Iolaire: Yes, I am listed   I got on the list just over three years ago.  Problem I have run into is the people in my family (immediate) all DQ'd out for various kidney issues (stones, mostly).  A couple other people have told me they looked into donating but didn't qualify due to weight issues.  I have a half-sister-in-law who is at the latter stages of the process though, she may make it through. I'm not holding my breath though, I'm just a pessimist like that.


Ukrainian:  It's difficult to explain, but I'll try. 

As I workout I am constantly checking the pace/cadence of the thrill/bruit/whatever you want to call it.  Anyway, as I began to exercise more often I was able to get a 'feel' for when I thought it was "tired".  If you are reasonably in tune with my body you can sorta feel the cues of your fistula as you exert yourself over time.  if there's any question in your mind, STOP.
The one thing I've learned though is that, done very patiently, you can really strengthen the fistula.  There are things I can do strength wise today that I couldn't do 2-3 months ago.  I actually mowed the lawn last couple times - that was impossible back earlier in the summer.  We live on a modest hill, it's about half an acre.  I had a really long and painful recovery from my fistula surgery (long story short, nerve damage in recovery - I was in constant pain for over two months).  I started out with very light weight.  No, really, I'm talking squatting with just a barbell (no weight)...and doing dumbbell presses with 10 lbs and limited range of motion in the beginning.  The key with weight training is to make your only goal not harming the fistula.  I did whatever limited things I could with my fistula from the very beginning.  Over the weeks and now I guess 3 months or so now, I'm up to doing slow dumbbell presses with 30 lbs or paused bench presses with 85 lbs.  I do a lot of reps - 10, 12, 15.  I do a lot of pause work.  Things to make the exercise harder without adding unnecessary strain to the fistula.  I even do bicep curls on the fistula arm now - but just 10 lbs. I do 12, 15 reps. It's light, but that's honestly the point.  Patience, patience, patience.  don't set timelines for yourself exercise wise.  I had to learn to appreciate just being ABLE to still do these things, versus being a gimped potato.   I've set weight limits for what I will ever do with this fistula that I am basically at now (30 lb dumbbells, for example).  Yeah, I CAN do more - but that's not the point anymore.

Naturally, get vascular surgeon approval -  I did.  I reached out to him with questions early in the process, making sure I felt like I wasn't overdoing it. 

I'm not really knowledgeable on the specific demands of biathlon, other than that's a lot of cardio   Because of my specific kidney disease (PKD) I had to give up real cardio a few years ago.   

[okarol]

Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938

[Simon Dog]

If I start dialysis, my dietary restrictions don't improve.  I get protein consumption back, and I lose fluid consumption.  The rest is a wash.  Besides, every day I am holding off is one less day my wife has to help hook me up to a hemo device (we're going to do home hemo).

Congratulations on the home hemo.  If you use NxStage with 5x/week you will have less of a fluid restriction since you will have two one day gaps a week, rather than 2 one day gaps and a 2 day gap.  BIG difference.   If you use a conventional machine, try to talk your MD into letting you do either 4x/week or every other day - that 2 day gap can be lethal.

Everyone is different with home hemo, but travel D works.  I remember going to a clinic in Las Vegas at 5AM, getting the Shot Show (huge convention - on feet almost the entire day) the out for dinner and up the next day for a "day off of D".  The home treatments, especially if spread out over more than 3 days are not as draining.   I have other memories like barrelling down the back roads of rural Texas in a borrowed F250 passing vast desolation and a few oil wells to get to a treatment center in a one stoplight town, plus the one in Nowhere, NH where they asked me to wait on sticking the needles until they could get the staff circling my chair to watch.

And why have you wife start the needles?  Unless you have something like Parkinson's you can learn to do this yourself.

Hemo will rob you of all residual funcion and you will probably stop urinating withing 6 months - which ups he fluid restriction.   But, you can safely have more than 1L/day on those days that are not followed by a treatment gap.  But, as you failure continues without D you will also gain a fluid consumption limit .... if you live.

Gray mater?     I continued to work for my first 3 years 30/hours at a mentally demanding job until there was corporate turmoil and part time was no longer workable.   I'm back at it full time post-transplant ..... pushing 65 and still working with 25 year old on tech projects.   Years ago I would have thought it failure not getting to senior management by now, but these days I feel grateful I am able to keep up with the fresh moist brains of the younguns.

D will improve your lifestyle.  Without it, you will die as your disease progresses.  With it, you can live a long time and quite possibly get a transplant.   Keeping your current lifestyle and thinking you can continue to maintain it without out dialysis or a transplant is not realistic.    So is Dialysis an improvement in lifestyle over Die?   Quite possible yes.  It was for me.

I started my journey on D in my mid fifties, but was diagnosed about 17 years before D was necessary so I had time to get used to the idea.

[fightingPKD]

Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938

I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap.  Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.


Simon:    Naturally, at some point soon-ish, dialysis is the answer.  That's why I have a fistula.  It's just not today. Or tomorrow.  I'll resist until I can't anymore, and then I'll begrudgingly accept this new phase of 'life', knowing I did everything I could to extend myself as long as possible.

As far as sticking myself, not everyone can do it.  Will I try to learn? Sure.  However my wife is the chemist and researcher.  She's the one who found it incredibly cool and fascinating to replace gauze in my open fascia for months after my accident and lost kidney in 2004.  She is an absolute klutz when it comes to gross motor skills, but I can't even get in her zip code when it comes to fine motor skills. 
If for some reason after a few months I just cannot do it myself, I'll just set up occasional weeks when I go to a center, to give her a break or something.

[Simon Dog]

The current thinking is that starting PD early is good because it preserves residual function, but there is no increase in survival rates or longevity waiting to start HD until you really really need it.    I knew I needed to switch from PD to HD when I developed the habit of opening the door at stoplights to puke on the road.

Hang in there.

[fightingPKD]

I hear you!

PD was never really a practical option for me, due to the size of my remaining kidney and cysts on it and my liver.  My lower stomach sticks out now like a dadbod despite the fact I'm reliably in the 163-167 lb range.  They are guessing when I get a transplant (whenever) and they remove the other kidney, I'll drop about 8 lbs right then and there, and my abs will flatten back up.

[okarol]

Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938

I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap.  Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.

I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.

[UkrainianTracksuit]

Ukrainian:  It's difficult to explain, but I'll try. 

As I workout I am constantly checking the pace/cadence of the thrill/bruit/whatever you want to call it.  Anyway, as I began to exercise more often I was able to get a 'feel' for when I thought it was "tired".  If you are reasonably in tune with my body you can sorta feel the cues of your fistula as you exert yourself over time.  if there's any question in your mind, STOP.
The one thing I've learned though is that, done very patiently, you can really strengthen the fistula.  There are things I can do strength wise today that I couldn't do 2-3 months ago.  I actually mowed the lawn last couple times - that was impossible back earlier in the summer.  We live on a modest hill, it's about half an acre.  I had a really long and painful recovery from my fistula surgery (long story short, nerve damage in recovery - I was in constant pain for over two months).  I started out with very light weight.  No, really, I'm talking squatting with just a barbell (no weight)...and doing dumbbell presses with 10 lbs and limited range of motion in the beginning.  The key with weight training is to make your only goal not harming the fistula.  I did whatever limited things I could with my fistula from the very beginning.  Over the weeks and now I guess 3 months or so now, I'm up to doing slow dumbbell presses with 30 lbs or paused bench presses with 85 lbs.  I do a lot of reps - 10, 12, 15.  I do a lot of pause work.  Things to make the exercise harder without adding unnecessary strain to the fistula.  I even do bicep curls on the fistula arm now - but just 10 lbs. I do 12, 15 reps. It's light, but that's honestly the point.  Patience, patience, patience.  don't set timelines for yourself exercise wise.  I had to learn to appreciate just being ABLE to still do these things, versus being a gimped potato.   I've set weight limits for what I will ever do with this fistula that I am basically at now (30 lb dumbbells, for example).  Yeah, I CAN do more - but that's not the point anymore.

Naturally, get vascular surgeon approval -  I did.  I reached out to him with questions early in the process, making sure I felt like I wasn't overdoing it. 

I'm not really knowledgeable on the specific demands of biathlon, other than that's a lot of cardio   Because of my specific kidney disease (PKD) I had to give up real cardio a few years ago.

Hey thanks - this is helpful. Without any “real” exercising of my arms, I went from being able to lift heavy-ish things to noodle arms now. And I found that when I pulled out the roller skis for fun/heck of it, the arms just are weak. I’ve asked around with transplant patients that took a “fitness direction” about weights and couldn’t get a good answer. Some avoided dialysis with a living donor and some had short term catheters. So, it is encouraging to see that it can be done (with approval) and with care of the fistula considered. Great work on your part!

[fightingPKD]

Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938

I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap.  Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.

I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.

Full credit to you for this.  No, I'm definitely not putting this kind of effort into it.  I just can't  be 'that person' I guess.  Begging's beneath me.

If I die sooner as a result, I do.  This country's circling the drain anyway.

[kristina]

Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938

I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap.  Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.

I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.

Full credit to you for this.  No, I'm definitely not putting this kind of effort into it.  I just can't  be 'that person' I guess.  Begging's beneath me.

If I die sooner as a result, I do.  This country's circling the drain anyway.

Hello fightingPKD, I keep my fingers crossed for you and I do hope you are going to be lucky, and your kidney transplant is going ahead without any complications... Good luck ! 
I received my kidney-transplant from a diseased donor who happened to be a perfect match despite us being born in different countries, which goes to indicate, that in a way we all seem to be related to each other somehow ... The first few years were very difficult for me because of "my" underlying diseases with flare-ups etc. which made my own kidneys fail in the first place and my kidney-transplant took quite a few very difficult-to-handle hurdles plus chronic pain because of an injured nerve "in that region" during the transplant-operation. But now, a few years later, it all seems to heal (touch wood!!!) and I feel, that I might be on my way to recovery (touch wood again !!!).
Please take great care and please don't take any hasty decisions and ... please talk it over with family and/or friends  ... and I keep my fingers crossed for you... Please don't despair and please take great care and I send you kindly my best good-luck-wishes from Kristina.