Hospice and palliative

[enginist]

I've been having problems with recurring UTIs, which do a number on my GFR, and I think that my run of extremely good luck is set to expire sometime in 2021.  I've already ruled out dialysis, so that leaves me in the somewhat fortunate position of knowing how and when I will die.  I have read stories on this site about terminal kidney patients, some of whom died peacefully and some who did not.  Maybe one of you veterans can tell me why those who didn't go peacefully were allowed to suffer.  Is it because their suffering was beyond the reach of medicine?   As my numbers start to decline, wouldn't I be given a handful of prescriptions to counteract the worst effects of dying?  Is it something I can manage on my own?  How much agency will I have, and how much will I need?  I don't want to lose my independence.  This may sound odd, but the last thing I want is to be on my deathbed surrounded by friends and family.  The whole thing seems kind of ghoulish to me.  I'd also prefer not to be attended by hospice workers, who after all are strangers.  So where does this leave me?  Palliative care in a hospital setting could be an option, but only if, to take one example, I descended into delirium.  Based on my own experience, from a time when my kidneys almost failed, I think that I'd descend into sleep and then into a coma.  It would be fast and painless.  But if I'm wrong and the process is drawn out, would I be able to hasten it along, at a moment of my choosing, with morphine pills or fentanyl? 

[kristina]

Hello enginist,
It makes me very sad and I feel so sorry to read your thoughts and unfortunately I don’t have an answer and can only offer my thoughts about dialysis. For example I had a chest-access and since I always made sure that no water ever touched it, it created no problems and there was no pain. I was also lucky to have no transport-problems and the four hours went as quickly as is possible by reading, solving crossword-puzzles, listening to music and/or watching a favourite DVD on an easy transportable little DVD-player.

... I sincerely do hope you think “it” over again and hopefully you might come to a different decision (fingers crossed !) and try your best to keep your little fighters functioning, wait and see and try ”it” out?  Would it not be much better to decide how to go on after you have tried “it” out for a few weeks/months?  Don’t forget, right now is a very difficult time to make any decision since we are all in isolation because of Covid 19-regulations and all these constantly changing Covid 19 - regulations create a very depressive time and “climate” for all of us.

Please give yourself a little more time to think “it” over and perhaps try out one of the dialysis-options? There is nothing to lose to try “it” out ... and ... it might also be an idea to make a list of what is important in your life and what is not so important and then weigh it up and think it over again and ... you don’t know, as luck might have it, your “little fighters” might carry on their function for much longer than it might look like right now ... Good luck!!!
Please take care and I send you my best wishes from Kristina.

[MooseMom]

I understand your position entirely and respect your decisions.  I do not have answers for you, but I have a few thoughts that may be helpful...or not.

My husband's aunt had terminal pancreatic cancer and chose hospice care at home.  I wholeheartedly agree with you about not wanting strangers in my home, but her experience made me think twice.  The hospice nurse was very experienced and became a very welcomed presence.  Please don't write off that option just yet.

All of your questions surely are asked frequently by many people, so my first thought is that you could approach your PCP or nephrology team and ask them to point you in the right direction for information.  I would be surprised if they didn't already have information about hospice care in your area.  I also would have thought that your neph would be able to tell you what you might expect should you go it alone and how your discomfort could be managed by yourself.  It might be an idea to print our your list of questions in your post and take it to your neph.

Please let us know what information you gather because I'm sure a lot of us that at one time or another thought along the same lines.  Take care.

[enginist]

Kristina, how long did you have the neck catheter?  No pain, you say.  But aren't they more prone to infection than a fistula?  I'm sure you were very careful with it.  Maybe you were the exception.  And what about the process itself?  Were you drained and exhausted all the time?  What about other side-effects?

Moose Mom, I did bring up the subject about a year ago, but the doctor seemed to brush off my concerns.  Of course, at the time my GFR was a fairly robust 36.  Since then it's been fluctuating like the Dow Jones average.  I'll question her again at my next appointment.  Thanks.

And Kristina, didn't you say in some old post that your lab numbers fluctuated wildly before your kidneys failed?  Was the fluctuation considered a precursor to a decline in kidney function?  Thanks.

[UkrainianTracksuit]

I just want to jump in about catheters.

I finished off my dialysis years with a catheter. Again, I kept the area clean and dry. No infection and no pain whatsoever. Yes, they are more prone to infections, but it is often related to personal care. Such as, people got them drenched in water, they constantly scratched it while the skin microbiome has its own things going on. The catheter bandage (Tegederm) was changed once a week it lasted quite well. It was only near the end of week (where it needed a change) that I used my own medical tape to tape the looser part back into place.

Perhaps my relevant story to your case would be my grandfather. He started dialysis around the age of 80 and he got around 11 to 12 extra years of life. He completed it all with a catheter. He had it changed (small surgical procedure) a handful of times over the time he was on the machine. The only time he ended up with a serious infection that required hospitalization was unrelated to his catheter --- it was the time early on that the medical team attempted to create a fistula!

It was only in the last 4 years on the machine that he started to decline. He had mobility issues from the war that caught up with him that made dialysis uncomfortable. But anyway, in the early years, he still went for walks, kept a social life, and went dancing. He even traveled abroad to my wedding. (Quite a few seniors still travelled locally within the province on weekends.) The first years on dialysis, even after sessions, he would go to the grocery store right after. When he got more settled on the machine, he was tired directly afterwards, but he had energy on his days off.

That is typically the case: tired right after a session, but then energized the days after. He was a tough man and had a lot of faith in God. (I know, a verboten topic here.) It's funny, we still talk about him everyday, but since I became his caregiver, a lot of the stories we tell are from the dialysis years.

So, I won't claim that it was a typical scenario for a senior citizen starting late in life, but if the main issue is renal failure, and you are otherwise healthy. It is something to consider. I mean, I witnessed some frail older patients start, and pass away months after.

Now, I'm not here to change your mind as you know best for your condition and your end of life planning, but it seems some of the negative dialysis noise has overpowered other experiences.

But, I do indeed concur with MooseMom to speak with your doctor and/or nephrology team. At my neph unit, they are quite open about the avenue of conservative care (though they wouldn't let me follow that..hahaha) where they sort out medication to ensure you are comfortable with your declining renal function. And it is through those connections with knowledge, they know the services available and the processes how to procure them when it is time. They can answer your more direct questions about what will be on offer.

[SooMK]

Thank you for posting this question. I have always hoped that I would have the courage to make this type of decision if it seemed my medical train needed to be derailed. Ideally your nephrologist would have recognized that your question deserved a serious answer and helped you get the answers you seek. To make your decision you need to have all the information. I believe that this subject has been getting more professional attention recently. You may find this article interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4255391/

I have been struck by how well some people do on dialysis as reported here on IHD. However I saw firsthand the heartbreaking struggle as dialysis wore my mother down. We can surprise ourselves. I wish you the best and thank you for your honesty.

[kristina]

Kristina, how long did you have the neck catheter?  No pain, you say.  But aren't they more prone to infection than a fistula?  I'm sure you were very careful with it.  Maybe you were the exception.  And what about the process itself?  Were you drained and exhausted all the time?  What about other side-effects?

Moose Mom, I did bring up the subject about a year ago, but the doctor seemed to brush off my concerns.  Of course, at the time my GFR was a fairly robust 36.  Since then it's been fluctuating like the Dow Jones average.  I'll question her again at my next appointment.  Thanks.

And Kristina, didn't you say in some old post that your lab numbers fluctuated wildly before your kidneys failed?  Was the fluctuation considered a precursor to a decline in kidney function?  Thanks.

Hello enginist,

Thanks for replying and if I remember well, I had my chest-tesio-line for about four years and to my knowledge, it is only prone to infection if it comes into direct contact with water etc. (Please check-up with your doctor.) Most patients at "my" dialysis centre also had the same chest-tesio-line-access and I only remember one girl suffering an infection after she took a bath, but she was lucky and recovered.

I was often exhausted but that could have been connected to "my" underlying medical problems of SLE/MCTD etc., which was also one of the reasons for my kidney failure. But apart from "my" exhaustion on and off, I had no other side-effects, except, that I felt not always as alert as I felt I could have been. I don't remember my lab-numbers fluctuating, but I had to take great care to make sure that my potassium was being kept under control.

I wish you good luck, take care and I send my kind regards from Kristina.

[enginist]

Thank you, all (Not "thanks y'all").  After considering your input, I've moved a few squares on the chessboard from no to maybe.  The catheter has possibilities that I hadn't considered before.  I am not frail, but, like you, Katrina, I am slightly built.  The catheter might be more convenient and considerably less traumatic than a fistula.  And if, as UT says, I would feel energized on my off days, then I could probably continue to run, one of things I most enjoy.  I could also keep doing chin-ups and such, which a fistula may have interfered with.  But what about sweat?  Would sweating be the same as exposing the access or the adhesive to water?

MooseMom, I'll present my doctor with a list of specific, concrete questions that pertain to self-care at the end.  Maybe she'll be able to tell me how much autonomy I would have.

SooMK, thanks for the excellent article, which concedes that there are worse things than dying, dialysis being one, at least for some.  I am not eager to die, but neither do I cling to life that dearly.  I don't think it would be difficult to let go.  This is both a business and a philosophical decision.   

[kristina]

Hello enginist,

I am very glad for you to have moved "a few squares on the chessboard" from no to maybe, that is really good news !

Unfortunately I don't know much about running etc., but perhaps it might be a good idea to keep another one or two shirts with you whilst exercising and change, not only during the exercise, but also during the summer?

I remember changing every day at least two times during the summer just to make sure and I never had any problems with my dialysis-access. Please also involve and ask your medical team about some of these questions as well, just to make sure and I wish you the best of luck and take good care, Kristina.

P.S. I also showered/washed much more often during the summer i.e. washing carefully with a damp little towel the upper part, whilst showering the lower part of my body. At first I was a little nervous to make sure to make no mistake, but later it became an easy routine. Take care!

[UkrainianTracksuit]

Activities that cause a lot of sweat should be avoided. It is not so much due to the liquid nature caused by sweat, but the fact bacteria naturally lives on the skin and could traverse where you do not want it around the catheter site. Running is possible, but the catheter would simply need to be taped down. It would in fact give an uncomfortable tug feeling if it isn't. You probably already have some in your gear, but athletic clothes that wick away sweat, like Climalite, helped, as well as layering or extra shirts (like kristina) pointed out. Chin-ups would be a no-no simply because they can put pressure on the upper body and cause some blood leakage. (Don't ask me how I know.  )

One thing to consider going the conservative care route (which you plan on) is that you can get approximately the same amount of enjoyable years. For instance, your UTI issue could be resolved for awhile, and you can hover around 15% egfr for awhile, and still technically feel "alright", maybe not great. With a keen eye on your medication, a good eye on your diet, and watching fluid intake, you can continue activities you love with some tweaks.

It may seem like the same what you are doing now, but there are a little more nuances in Stage 4b and 5.

The decline does not necessarily have to be rapid. So, while you discuss the final picture with your care team, be sure to include questions such as "what can be done to make the best of my years and stabilize my remaining function?"

It's not about extending life simply for the sake of it, but to having one worth living in those sunset years.

[enginist]

Kristina, I had the impression that with a suitable covering I could take a full-body shower--one of life's little luxuries.  If I'm wrong, then that would knock me back a few squares.  UT, you mention keeping an eye on my diet, and I know that Kristina too was always conscientious about what she ate.  One change I've noticed recently is an inability to handle acidic foods, even on an occasional, biweekly basis.  So I've had to cut out chicken and tuna, which I learned have a high acid load, and go almost strictly vegetarian.  I noticed right away that my stomach is less volcanic, so maybe this will help, along with more control over the UTIs.  Unfortunately, my new urologist writes scripts for antibiotics with a very conservative hand.  Thanks again for the advice.  I appreciate it.

[UkrainianTracksuit]

There is a covering called Korshield that people swear by for having showers with a catheter. Personally, I've not used one so I can't give my take.

It is obviously apples and oranges, but with a plant-based (funky way of saying vegetarian these days, I guess) diet, I managed to keep my renal function stable for a long time. As you know, there is more evidence now to support what others have experienced, but it does indeed help.

How are your potassium and phosphorus levels doing at the moment? I just ask because you'll probably need some alkaline protein sources to supplement your diet. As long as you are vegetarian and not vegan, whey protein power is alkaline and mostly renal friendly (not a load of phosphorus). Tofu and tempeh are also considered renal friendly and not acidic. (Plain, none of the flavoured kinds as they have sodium.) Lastly, almonds are great.

We had to switch up my grandfather's diet in the last year of his life. (Before he had to get 24/7 care.) He had a situation where he couldn't keep food down, but wasn't actually sick. No fever. He went on a fish binge - it was fish every damn day and he wouldn't listen. Then, he started to get UTIs. It wasn't until he was told that acidic foods could lead to such an outcome that he stopped eating it. (Fish obviously wasn't the main cause, but it's what he needed to hear to stop his binge.) So, like you, we learned fast about alkaline foods.

[MooseMom]

Enginist, I have a couple more thoughts.

I don't like telling stories of other people's experiences, generally, because "to each his own."  But your comments about your dr having a conservative hand writing prescriptions for your recurring UTIs make me want to tell you quickly about my dad.  He had a very small prostate tumor, malignant, and his dr told him that he'd die of something other than prostate cancer.  But my dad didn't like the idea of having a cancerous tumor inside of him, which was understandable, so he opted for radiation treatment.  It killed the tumor, but it left him with damage to the urethra, and for the rest of his life, he went from one UTI to another.  He was always on some antibiotic (or maybe it was the same one over and over).  He finally contracted a "superbug" UTI that was resistant to probably even an atomic bomb, and in the end he died of sepsis, not prostate cancer.

So, two things come to my little head.  One is that he certainly didn't help himself because he was urged to keep well hydrated, but I never saw that man drink a glass of water.  The second is that I have always wondered that if his urologist HAD been a little more conservative in writing prescriptions, maybe my dad would not have been brought down by a drug-resistant bug.  To be fair, though, I did not know exactly what the urologist did or did not do/write, but my suspicions were raised.  I am hoping that there are avenues you might be able to pursue to avoid UTIs, such as a change in your diet, as you've discussed.  Do you keep well hydrated, especially as you exercise?  Sorry, I'm just kind of throwing things out there.

My mother had a chest catheter for dialysis for 18 months, and she probably would have keep it if her neph hadn't pushed her into having a fistula created.  I don't think she would have questioned it.  Anyway, she did fine with it, but I do not know how she managed with showers.  (This was all 16 years ago.)  Out of curiosity, I looked around a bit and found this.

https://www.kidneybuzz.com/dialysis-patients-do-not-have-to-be-afraid-to-shower-with-chest-catheters-anymore/

I have no idea if this would be acceptable to you, but it shows that there are "work-arounds" available for just about everything!

[enginist]

Koreshield sounds like a good fix, moving me forward on the board again.  (But I'm playing against a Russian spy who's also a Grand Master, so any advance is bound to be temporary.)  If Kristina got four years from her catheter, MM's mother got 14 months, and UT's grandfather 10-11 years, then it may be workable.  It doesn't seem conducive to high-intensity intervals. But maybe, as MM said, I can work around it.

When I first got sick four years ago, I followed the renal diet as if my life depended on it.  And it worked.  Lately I've been slacking off, sometimes being virtuous and sometimes delinquent.  All my labs, across the board, except for the most important one, are good.  All are in their given range, and even the HGB returned after post-op anemia, a real thing.  I get most of my whey protein from one or two bottles of Ensure as well as fried tofu sandwiches, which are pretty good with tomatoes.  You now can get flavored egg white wraps, which have 10 grams of protein and also make good sandwiches.  The renal diet is okay but kind of repetitive and boring.  The dialysis diet is impossible to follow. 

I didn't know that acidic foods could cause a UTI.  I'll have to look it up.  I do know that non-alkaline foods can impair renal function. My problem is a catheter, which is easily colonized by bugs.  For three years, I had no trouble with it, but then it started breaking bad.  It's a quandary, a dilemma. If I take an antibiotic too often, it'll be ineffective.  But if I don't, I'll get a bug, which can be painful, raise BP, and drive down GFR.  I think that their last line of defense is delivering a high dose by IV.  But that requires a hospital stay, and one of my New Year's resolutions was to stay out of hospitals.   

I, too, had sepsis, urosepsis, probably what your father had.  Sepsis is hospital-borne illness--nosocomial as they say.  It likes to lurk in hospitals because it's an opportunistic infection.  Any illness can be compounded by a bout of sepsis, so it may not have been the urologist's fault.  Plus, the guy was dehydrated. 

Your dad, MM, and your grandfather, UT, were both tough and stubborn.

[MooseMom]

I'm about to ramble a bit in an effort to show support/share an experience/agree with what you've posted, etc.  I hope to be somewhat helpful.

The renal diet is a bast**d.  I did that for 8 years.  But like you, enginist, I stuck with it, and it bought me the time I needed to do all the pre-transplant stuff. 

If your labs are good, "except for the most important one", that's something to celebrate, truly.  I'm well impressed.

My husband eats those flavored egg white wraps, and I like them, too.  They're quite miraculous.

Your use of a catheter explains a lot.  It certainly complicates things for you, doesn't it.  I can see the fine line you and your urologist must tread.

As for my dad, yeah, it was probably urosepsis; that sounds logical.  I can't claim to know how he got it, but I don't think it was necessarily hospital-borne in his case.  I had just arrived from London the day before; I remember him sitting in the kitchen drinking Ensure because he was told to drink more fluid, and he didn't like to drink water because he didn't like how it tasted.  He was on yet another course of antibiotics, and then that night I was awakened by the paramedics coming into the house, and they had to carry him like a baby to the stretcher.  It was 3AM, and I had my little boy with me.  The next day I went to see him and to give my mother a break.  My dad looked grotesque. and my mom had told me that the doctors had said he'd had a stroke.  A nurse came in, and I told her about the stroke, and she took one look at him and said, no, that's sepsis.  She was right.  I don't blame the doctor, but I am still angry with my dad for not drinking one damn glass of water.  I mean, how hard can that be?  He would drink a small glass of milk with each meal, and then he'd nurse one cup of coffee all day long.  He'd sit outside in the shade in the middle of July in Texas when it was as hot as it is on the face of the sun, but would he ever drink a glass of water?  No, because he didn't think it tasted good.  Yeah, he was stubborn, but no, he wasn't tough enough to drink some water.  He was 82 when he died, and he was in pretty good shape despite his age.  He'd been a runner for years, so he was quite fit.  His dad died of heart problems, so my dad was determined to look after his heart, so he started running.  When he got too old to run, he'd walk every day....in the heat....still not drinking water!!!!!   So, all of that effort to protect his health for all of those years, all to be undermined because he wouldn't drink enough.  I mean, how stupid is that?  That's not toughness, rather, it's just dumb.  (You can see I'm still angry, particularly when I think about how much all of us have had to go through just to survive.)

Anyway, that turned out to be more of a rant than I had expected or intended.  Suffice it to say that I think you are going to be OK because you are smart and are willing to do the work.  You've followed the diet and done all that other stuff, all of it being hard, so I think you have what it takes to get through what is thrown at you.  I think you will find a way that works for you.  And if you decide that you don't want to follow a certain path, I think you'll make that decision with the advantage of good insight, good information, and a good amount of consideration.

And we are all here to support you.

(Apologies for the blathering.  Sometimes I just throw everything at the proverbial wall hoping that something helpful will stick.)

[kristina]

Kristina, I had the impression that with a suitable covering I could take a full-body shower--one of life's little luxuries.  If I'm wrong, then that would knock me back a few squares.  UT, you mention keeping an eye on my diet, and I know that Kristina too was always conscientious about what she ate.  One change I've noticed recently is an inability to handle acidic foods, even on an occasional, biweekly basis.  So I've had to cut out chicken and tuna, which I learned have a high acid load, and go almost strictly vegetarian.  I noticed right away that my stomach is less volcanic, so maybe this will help, along with more control over the UTIs.  Unfortunately, my new urologist writes scripts for antibiotics with a very conservative hand.  Thanks again for the advice.  I appreciate it.

Hello again, enginist ... I am not sure whether it IS actually possible to "enjoy" a full-body-shower or a bath whilst risking your life because you are living with a chest-tesio-line-catheter which must be kept dry at all times?

As I have mentioned before, I did have ONE chest-tesio-line-access for my dialysis-sessions through the years, as most patients at "my" dialysis centre also had and I only remember one girl suffering an infection, which "came about" and necessitated a new chest-tesio-line after she took a bath, but she was lucky and recovered. So, as you can imagine, I never ever tried anything out to endanger my chest-tesio-life-line and never ever had a bath or full-bodied shower during my dialysis-treatment-years. Why should I take any risks when I want to live ?

Of course, a full-body-shower is one of "life's little luxuries", as you say, but : when it comes to dialysis-treatments, the most important fact for me was from the start : to live as well as is possible "with" it and I could not see any pleasure in daring anything that could have endangered my chest-tesio-line-dialysis-access and therefore my life, just because of a full-body-shower or a bath and ... anyway : I "got" used to my daily routine of carefully cleaning my upper-body with a damp little towel and shower my lower body and that kept me clean and it became my daily routine and was not risky at all.

In terms of dialysis-treatments it was much more important for me to think about my priorities and therefore take the greatest care of my chest-tesio-life-line at all times in order to be well enough to enjoy a concert and/or playing the piano and/or reading, discussing interesting topics & books etc.

Take great care and good luck and best wishes from Kristina.

[enginist]

Sepsis likes to hide, MM, sometimes laying dormant before flaring up into a full-blown infection.  His damaged urethra was probably the point of entry, the prostrate treatment lowered his defenses, and any one of the UTIs was ready to be exploited by a more aggressive microbe.  He certainly didn't help his cause by failing to drink water, which can help flush out the system and prevent germs from multiplying.  I drink three quarts of water a day, water that I flavor with a liquid called Stur, which has no additives or other suspicious ingredients. 

I don't think I'm as cautious and meticulous as you, Kristina, so maybe a catheter wouldn't work for me.  It would be intolerable to take a sponge bath every day, never feeling really clean.  And it would be impossible for me to cut my water intake down to a few ounces a day, a thimbleful by comparison.  This all goes back to QOL and what makes life worth living.  I know how much you like music, so I'm glad that dialysis gave you the opportunity to improve your piano playing.  But dialysis both adds and subtracts.  Undeniably, you get more time, but you lose so much of everything else.  Each of us has to decide whether the trade-off is worth it.

[MooseMom]

Well, you're right, enginist.  We each of us have to decide what we are willing to live with and now flexible we can be.  I really appreciate you sharing your thought process.  Your posts have really got us all thinking.

[enginist]

We're all like the knight playing chess with Death in Bergman's "The Seventh Seal."

[enginist]

After two weeks of tweaking my diet, making it more alkaline, the UTIs have gone away and my GFR increased eight points.  Neither my neph or nutritionist have emphasized an alkaline diet, but there is ample evidence that it may be the key to retarding or possibly even reversing the progression of CKD. 

[MooseMom]

Oh, wow, that's really impressive, enginist!  That's quite fantastic!

[enginist]

Thanks, MM.  Frankly, I'm stunned.  I thought that chicken, tuna, and rice--the staples of my diet--were harmless if not entirely beneficial.  But after resisting the change at first, I am now convinced.  If these foods aren't in themselves acidic, they are in the category of acid forming.  And UT was right: acid-forming foods can cause UTIs as well kidney damage.  I hope we all have as much success in avoiding the virus.