Officially am declining dialysis

[Charlie B53]

Athena,

Don't give in just yet.     There are a number of members here that have put of beginning Dialysis for many years just paying strict attention to details such is responsible diet and responsible fluids, both type and volume.

You yourself have already seen a huge extension.

Kidney function is a strange thing, it can be affected not only by your fluid volume and diet, but weather changes, ANY medications, be they prescribed or OTC.

I can't say what herbs, but some herbs and spices may be beneficial to function.

That old adage,  "All things in moderation"  really does apply.

Don't lose Faith.   

[Athena]

Thank you so much everyone for your replies. Each one has meant so much to me! I am locked into hearing it all from the doctors & nurses right now, so any words of wisdom & accounts of direct experience from fellow patient/warriors is extremely valuable to me.

Today I was educated about dialysis methods (home hemo, in centre hemo & PD (both the manual & automated PD). I don't know how I managed to calmly take it all in.

I seem to being encouraged towards accepting dialysis by everything I have heard today. My new neph is not a pro-transplant type of guy (who works at the preferred hospital). It is my old Neph who is making the case for my being listed for a transplant.

But from everything I have learned - the pancreas tx is very risky to me because if the new pancreas fails - I can't go back to my native pancreas (which functions normally except for the deficient insulin cells). I wonder what your thoughts are on this UkrainianTracksuit?

If I'm going to avoid a pancreas tx, then the only way that I can have a preemptive kidney tx (and avoid dialysis) is to find a living kidney donor! How on earth does one find one? This is a massive problem. The enormity of this dilemma is truly mind boggling. I refuse to even think about asking my sibling to consider donating to me - it's just not going to happen.

The dialysis coordinator seemed to suggest that Peritoneal Dialysis (PD) seems to be the best option. I was shown a photo of a man who travels with PD & who leads a very active life. He seemed to look quite healthy. But that catheter tube that will stick out of one's abdomen is not ideal - it looks risky where infections are concerned. And the thought of having all that extra fluid in the abdominal cavity seems debilitating (for one thing, the missionary sexual position would be unviable because of abdominal pressure).

I am a bit overwhelmed at the moment & I'm just laying it all out on the table, so to speak. It has only just started for ne - I've avoiding looking at this subject for years now.

I will be back to a dialysis education seminar & then to a transplant education seminar over the coming few months.

In the meantime, should I get the flu vaccine? I've never bothered with this thing before as I've not been prone to getting serious colds or flu. I've had a pretty good immune system. I am worried about any serious reactions to the flu vax - I seem to be becoming paranoid & anxious about the concept of being injected with chemicals lately.

Athena.

[iolaire]

The dialysis coordinator seemed to suggest that Peritoneal Dialysis (PD) seems to be the best option. I was shown a photo of a man who travels with PD & who leads a very active life. He seemed to look quite healthy. But that catheter tube that will stick out of one's abdomen is not ideal - it looks risky where infections are concerned. And the thought of having all that extra fluid in the abdominal cavity seems debilitating (for one thing, the missionary sexual position would be unviable because of abdominal pressure).
…
In the meantime, should I get the flu vaccine? I've never bothered with this thing before as I've not been prone to getting serious colds or flu. I've had a pretty good immune system. I am worried about any serious reactions to the flu vax - I seem to be becoming paranoid & anxious about the concept of being injected with chemicals lately.

Athena I'm glad you are able to attend the dialysis education and get continue to be learn about the options beyond declining dialysis.

Don't let the image of an active healthy PD patient cloud your view of the other dialysis treatments. The same image could be shown for HD patients as well (or transplant recipients). But the message that you can be healthy on dialysis is a good one, but that depends on the overall health of each individual person.

The flu vaccine is a good question.  I've not been hit hard by the flu in the past but did start taking it when it was offered at work and later at the dialysis clinic, and now back to work flu shots post transplant. (I could get it at my nephrologist as well.) I guess to me it seems more risky to risk the flu which is common, versus reactions to the vaccine, which I feel is much less common than the flu.

[Cupcake]

Flu vaccine-heck yes! and check to be sure you are up to date on everything else: pertussis, pneumonia, shingles, etc.

Sex while on PD-maybe just takes a little more planning/scheduling,"hook up before you hook up" So things are not always spontaneous, so what? PD is gentler on your remaining kidney function. I did it for 2 years prior to transplant.

You are doing great-keep asking questions!

[UkrainianTracksuit]

But from everything I have learned - the pancreas tx is very risky to me because if the new pancreas fails - I can't go back to my native pancreas (which functions normally except for the deficient insulin cells). I wonder what your thoughts are on this UkrainianTracksuit?

Hi Athena, good to see you again!

As for the pancreas tx, you keep your native pancreas too. It keeps on doing its digestive and enzyme functions. So, there are two inside you. If the new pancreas fails, it is like life before: back on insulin. The native one keeps on doing its thing either way. It’s a pretty impressive CT scan of the torso to say the least!

Sending good vibes for the dialysis education and you make a decision that’s best for you!

[Charlie B53]

http://kidneyschool.org/

I learned a LOT at this place back when I was just starting this adventure.  The more you know the better equipped you will be before starting.

I did PD for 3 1/2 years before I slipped and gave myself an infection from Hell which caused me to have my PD Cath removed.

PD can be a life-saver, not just the dialysis part but for me being medically retired I was still eating as if I were working.  And I was gaining stupid amouonts of weight.

Having 2 liters of 'fill' caused me to seriously change my eating habits.  I began to eat not only less, but I made a conscious effort to eat healthier.  My first 2 years on PD I lost 100 excess pounds.

PD I had the freedom to eat whatever I wanted and I could drink as much as I wanted.

On Hemo we do not have that luxury.  We have to stay veery careful.

My PD Cath was 'tunneled'.  The exit site was mid-way between the center of my breastbone and my left nipple.  I thought it quite handy as it made it easy to see, to clean, make my dressing changes.  I had a couple of the PD Belt holders, but didn't like them at all.  I can relate to how a woman wants to get that bra OFF.    I usually taped it to hold it solidly.  A couple of my pocket T-shirts I cut a small hole in the backside of the pocket, stuck the cath through and it would lay in a curl in the pocket.

A solid week of training, they wanted to make SURE I knew what to do.

My first year I did 4 manuals daily.  Being and outside kinda guy it was a PITA.  I had alarms set on my phone to remind me when it was time.  I had to stop whatever project I was doing,  scrub my hands and arms spotless, go in the house and get done.  4 times a day.

I thought it really neat when I finally got my Cycler.   NO MORE MANUALS>   No more interruptions in my days.

Set up the Cycler with all my bags, prime it, plug into it, sit and read a while then go to bed.  Get up in the morning and disconnect.

The downside to the Cycler was my program was so long I was in the bedroom by 7 every evening.

Since my PD infection caused me to switch to Hemo and I have an early seat time, I am an early riser anyway.  The total time weekly is far far less for me doing in-center hemo.  I am fine with that.  I take my laptop, sit and read, the time just flies as I am lost in my own world.  This works for me.

There will be Pro's and Con's to all Dialysis,  The trick is learning more about everything so you can better tailor your treatment to suit YOU!

Ask away, we will be glad to spell out anything we can so you can make better informed decisions.

[Athena]

I've been keeping a bit of a low profile lately but just want to provide an interesting update. In early July I actually met my transplant nephrologist & transplant coordinator. We had a 2 hour consultation. With an eGFR of 18% (serum creatinine level of 250 umol), I have been placed on an 'inactive' pancreas & kidney transplant waiting list (I am a type 1 diabetic). I will undergo the full medical tests if/when my eGFR falls under the 15% mark, which is when dialysis will need to be started.

In spite of this morbid state of kidney functioning, I seem to be in very good health otherwise. The Neph took my arterial pulse rate in my thigh/groin area as well as at ankles & it was found to be very strong. I have clear lungs & no swelling anywhere. I exercise without difficulty & have no shortness of breath.

My regular neph has told me that he finds it remarkable that I don't have any peripheral neuropathy or balance issues, which is what he generally finds with long term diabetics with kidney failure. My electrolytes are all within normal reference ranges (except the PTH level & iron stores is starting to fall again).

The other interesting details is that my lifelong abstinence from drinking & smoking serves me very well at this important juncture. As well as not having had any blood transfusions to date.

I see the transplant neph in Jan 2020 for a review.

I have been made aware that the only way I can have a preemptive kidney transplant is by having a living kidney donor. If I can't find a donor, then the only other way is to be placed on the active list & wait for a deceased pancreas & kidney donor. To be placed on the active list, I need to fall within the 10-15% egfr range. Man, that feels like it can be close!

Diet still confuses me as I eat a fairly normal healthy diet (no junk food) with animal protein at dinner with lots of green salads & fresh berries & lots of Greek yoghurt for dessert. I do eat out a lot but I make healthy food choices when I do, whereever possible. My neph has not condoned animal protein restriction - he has even advised, when I grilled him, that many scientific studies do not support protein restriction in CKD.

Well I think this may be enough so I'll stop here.

I would really appreciate any comments or advice anyone can offer me.

[fightingPKD]

Athena,

Okay, so, reading your post from a couple months ago now, I do have some thoughts for you to consider.  I just don't frequent here very much.

First of all, I too went to transplant eval recently. August.  They were then, and still am today, shocked that I am not on dialysis.  My egfr is around 17-18% and I only have one kidney!

We are in similar places, except I am younger (46).  I still lift weights (compound barbells, the real stuff) three times a week. Just today I squatted 3 sets of 195 lbs for 8 reps for my core lift.  Then did 3 sets of 10 seated overhead presses at 75 lbs right after.  Then I went to the easier stuff.
I get to yoga as often as my schedule allows (twice a week, most weeks).  I walk a fair bit still.

My blood type is B+, which means I'm going to have a long, long wait for a cadaver kidney.  Sucks.

Anyway - I would suggest that, although I don't believe you should categorically refuse dialysis, I wouldn't necessarily let them force you onto it either.  For the record, and I've told the doctors this - I'm going to fight to go without dialysis as long as I possibly can.  I've read people functioning adequately at 8-10% eGFR. Everyone is different, and in my experience so far, very, VERY few people are as fit as I am. 
Additionally, there's not a single other health related problem of consequence, outside of the standard kidney related stuff.  I just did an echo two weeks ago and crushed it.  Got my BPM to a steady 160 and felt my knees would give out before my heart ever would.  I was at like 15-16 on the borg scale at the very end. 

Also, I too have been recommended that an 'average' protein diet is fine. My nephrologist is literally on the board of directors for my disease (PKD). She was the chief science adviser for five years.  I am 170 lbs and she wants me at 65-75g protein a day. Many days I'm under simply because the process of eating low salt, low potassium, and now lower phosphorus  really makes eating healthy a struggle.  Never mind maintaining muscle mass.
I will add that as far as animal protein goes, my neph did suggest keeping it limited.

You sound like a fighter.  Keep fighting.  It's hard, I have dark days and short periods of time. It sucks.  However, I rebound.  Because surrendering only expedites the problems. To hell with that.

[Simon Dog]

My nephrologist is literally on the board of directors for my disease (PKD). She was the chief science adviser for five years

She may know one of my former MDs - Dr Ron Perrone was running that show from 2006-2010., but turned his transplant clinic over to another MD a few years ago.

[fightingPKD]

Absolutely, Simon.

I've seen some of his videos.

[Athena]

Athena,

Okay, so, reading your post from a couple months ago now, I do have some thoughts for you to consider.  I just don't frequent here very much.

First of all, I too went to transplant eval recently. August.  They were then, and still am today, shocked that I am not on dialysis.  My egfr is around 17-18% and I only have one kidney!

We are in similar places, except I am younger (46).  I still lift weights (compound barbells, the real stuff) three times a week. Just today I squatted 3 sets of 195 lbs for 8 reps for my core lift.  Then did 3 sets of 10 seated overhead presses at 75 lbs right after.  Then I went to the easier stuff.
I get to yoga as often as my schedule allows (twice a week, most weeks).  I walk a fair bit still.

My blood type is B+, which means I'm going to have a long, long wait for a cadaver kidney.  Sucks.

Anyway - I would suggest that, although I don't believe you should categorically refuse dialysis, I wouldn't necessarily let them force you onto it either.  For the record, and I've told the doctors this - I'm going to fight to go without dialysis as long as I possibly can.  I've read people functioning adequately at 8-10% eGFR. Everyone is different, and in my experience so far, very, VERY few people are as fit as I am. 
Additionally, there's not a single other health related problem of consequence, outside of the standard kidney related stuff.  I just did an echo two weeks ago and crushed it.  Got my BPM to a steady 160 and felt my knees would give out before my heart ever would.  I was at like 15-16 on the borg scale at the very end. 

Also, I too have been recommended that an 'average' protein diet is fine. My nephrologist is literally on the board of directors for my disease (PKD). She was the chief science adviser for five years.  I am 170 lbs and she wants me at 65-75g protein a day. Many days I'm under simply because the process of eating low salt, low potassium, and now lower phosphorus  really makes eating healthy a struggle.  Never mind maintaining muscle mass.
I will add that as far as animal protein goes, my neph did suggest keeping it limited.

You sound like a fighter.  Keep fighting.  It's hard, I have dark days and short periods of time. It sucks.  However, I rebound.  Because surrendering only expedites the problems. To hell with that.

Thank you FightingPKD for your detailed response. We are in very similar stages ie 17-18% eGFR. I've just had recent labs done & am literally not wanting to know what they are! I figure, if they were extremely bad, someone would have called me by now.
 
You have an impressive enviable exercise routine. I know what you mean by saying you feel relatively fit & healthy. I do most days as well. I am a long distance walker & hiker. I seem to have good aerobic capability - even though I need to take EPO injections to avoid becoming anemic.

The way I cope with this disease is to live day by day & not think too much about the future. I am literally happy to wake up each day & see that I am still alive & able to get through it. I try to pursue enjoyable activities as much as I can & feel happy when I do. I also still have fairly good stamina & determination to overcome challenges & obstacles that come my way.

Everyrhing is now in dissarray where future medical treatment is concerned. My regular Neph who has looked after me for 10 years is quietly retiring. My transplant Neph is fully retiring next year & I will be in the care of a much junior less experienced Neph! I thought I was on the inactive kidney transplant list but apparently I'm not, as it was revealed to me.

So all roads lead to the one conclusion, which is that I don't want the future to arrive!  :stressed

Today is the most perfect moment in time. It will never be as good as it is today. 

But I will fight for myself in whatever situation I will find myself in. That's a given.

Thanks for your attention & for listening. Obe question I have for you is whether strenuous weightlifting may place a bit of a burden on your kidneys? I have heard this before somewhere but am unsure of any real facts about this.

[enginist]

Yes, Athena is right.  Weight training can cause your creatinine to rise.  I wouldn't take the chance.  What's healthy for a normal person doesn't always apply to a kidney patient.  The same is true for most animal proteins.  You should introduce tofu, egg whites, and low-sodium tuna to your diet.  And a daily smoothie with a scoop of whey.  And when you've faithfully observed the renal diet for a week or so, you can have a free day and go nuts with a burger or a beef burrito or anything else you want.  You can also wash it down with a couple of beers.  Most days you have to be virtuous, but occasionally you can be indulgent and delinquent.  When my GFR was 17, I was told to start preparing myself for dialysis.  And then, on the very next draw, the number shot up.  I'm convinced that it was due to my conscientious diet.  You can read posts by Jean and Kristina, to name just two, who wrung many years of extra life out of their kidneys by being hyper-vigilant about their food intake.

[fightingPKD]

Strenuous weightlifting does (temporarily) increase creatinine levels. It also temporarily increases blood pressure.   However, I'm living proof that the benefits outweigh the risks if it's done right. 

I was first diagnosed in 2004, at age 31, when I actually lost my first kidney (freak incident, detailed in my intro post).  My second one was at 50% egfr then.  It's been 15 years since, I've been lifting to some extent for almost all of that time. 
All I can tell you is I blew away the entire staff that reviewed me from the surgeons to the dietitian to the cardiologist.   By - in this instance - not doing what they told me, I'm 100% convinced I've not only given myself a superior quality of life over this time , but I'm better equipped to deal with the transplant experience going forward.  Today, I'm in physically better shape than healthy men 10 years younger than I am.
I suppose "everyone is different" though.

I also do yoga as I mentioned somewhere, 1-2x a week.  I also, like you Athena, do a lot of walking. Walking for distance is a HIGHLY underrated exercise for middle age to older folks.  Walking/hiking endurance gains are real and they are virtually no impact on the body!  I don't walk as much these days with the weather getting colder, but for about 6-7 months this year I was walking around 25-30 miles a week.

--------------

That said, I completely agree with the dietary stuff Enginist said.

I've been on this type of diet for about 18 months now (low sodium was the latest modification then).  The sodium was HARD.  It took my wife and I about 4 months to really get a grip on low sodium cooking. I lost like 10 lbs over the first few months because I simply wasn't eating much.
Thank goodness my wife is a very good cook and she eventually got a hold of good recipes.   Most nights she'll make a dinner with enough leftovers for me to eat for lunch the next day.  Breakfasts are on me, I tend to eat high fiber oatmeal, scrambled eggs and cheese with salsa, or a millet/flaxseed bagel with butter.

There are actually low sodium versions of food out there, they are just hard to find.  We spent dozens of hours researching all of the grocery stores in our area, finding the lower salt options for virtually everything.  Example:  We actually found bacon that was 75mg of sodium per slice. Seriously, it's nitrate free too. I think my wife gets it at BJ's.  Example 2:  Most cheese is actually workable into a low sodium diet.  Cheddar cheeses can run as low as 110 mg/slice.  If (whoever reads this ) commits to the time and research, you'll be amazed what you find.  There are plenty of spaghetti sauces under 200mg a serving. 

I tend to have two serious cheat meals on the weekend.  During the week I rarely go over 2g of sodium (the parameter I'm given) much at all.  Maybe once if we have to eat out one evening.  My alcohol consumption is fairly limited for the most part. I may go out and binge drink with my wife or a couple friends once very few weeks.  The rest of the time it's maybe 3-4 drinks at most during a given week.

[enginist]

When those who maintain a fitness routine are stricken by an illness, they are likely to have better outcomes than those with a similar illness who are out of shape

[fightingPKD]

When those who maintain a fitness routine are stricken by an illness, they are likely to have better outcomes than those with a similar illness who are out of shape

I totally get the concerns with doing it. I literally know of ONE other person, in all of the kidney forums/groups I've ever visited, that did the same as me. He turned out well, too.

My nephrologist (again, an expert in the field) was not a fan initially.  Over the years she seems to have come around on it, but I suspect she's seen the benefit in me.  Her sons starting doing crossfit a few years ago so we talk about it.

Even if we were to, for a moment, entertain that I am right, and what I've done is repeatable by a certain population of kidney patients- there's still major risk involved.
I spent months and months studying and fine tuning the compound barbell movements.  Anytime I had pain, I backed off.  I never once have had blood in my urine since lifting, and as recently as 3 years ago I was pulling 335 and almost squatting as much.
Having a high level of self-awareness and capable of understanding when to stop, deload, take a break is unfortunately not always common sense.  People can and do get hurt doing what I do.  It takes commitment to education.  Just like everything else involved with this disease.

I do think, if I were to EVER suggest to someone to do what I did....I wouldn't do it EXACTLY how I did it. I lifted HEAVY.  I mean, in the strength matrix of 1-5 rep sets.  If I could do it over again, I think I would stick more towards strength/hypertrophy hybrid --> 5 to 8 rep range where your heaviest sets are 5 rep maxes.  I've been doing this latte version for the past year or so.  I've also adapted to my kidney as needed.  3 months ago I stopped doing conventional deadlifts, and now do trap-bar.  Less masculine? Yes.  Required for my kidney now?  Yes.

I do think I took some un-necessary risks by pulling so heavy for so long. Risks that didn't come to bite me.  This was simply part of my mindset. I hate the fact this disease has sucked the strength and masculinity out of me, slowly but surely over the past 15 years.  I've always been fit, always played sports.  Tennis and hockey in high school, hockey in college and after until the day I lost my first kidney. 
Ultimately, I decided that I wasn't going to allow my body to decay any faster than it needed to just to cater to a problem kidney.  From what everyone says, dialysis is nothing but physical decay.  I chose to fight by building some muscle mass and enjoying the past 15 years or so as best I could

[enginist]

Tim,

I too am a fitness buff and my name is Tim.  I did martial arts for 30 years and especially loved the sparring, which I miss.  I'd still be doing it, but because of a poorly trained nurse I ended up with a suprapubic catheter, which means that I can't take any jabs or side kicks to the gut.  I can, however, run, swim, and do stairs.  I also like body-weight exercises, such as pushups and chin-ups.  Although I have CKD, my kidneys aren't as bad as yours.  I recently had an incarcerated hernia that left me puking for two days until I called an ambo.  The dehydration sent my GFR down to 11, but it recovered fairly well.  I have been extremely lucky since I was first diagnosed, but my nephrologist says that anything could take me out--flu, pneumonia, sepsis, or one of those insidious hospital-acquired infections.  When that day comes, I have resolved to skip dialysis and go straight to hospice.  I am 71, so at some point I will begin to deteriorate, regardless of what happens to the kidneys. I don't want to go to a nursing home.  You, on the other hand, are still young enough and strong enough to do well on dialysis.  I think you will be fine.  There are many posters on this site who have remained vigorous in mind and body after years of treatment.  You will learn a lot from them.