Officially am declining dialysis

[Athena]

Because of enormous mounting unresolved problems that I have (mainly other medical problems & the terror of having to deal with numerous medical specialists), I asked my original Neph for some sort of psychological support or counselor for overall support. He told me that if I was a palliative care patient (defined as a patient declining dialysis) he could get someone to work with me. Without thinking too much about it (as we were discussing my other pressing medical challenges), I just confirmed that I will be declining dialysis if/when it comes up in the future. He then told me, he'll have someone call me.

I am now wondering what the implications are of this? I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital. Can anyone offer any advice as to what sort of treatment a palliative care patient would receive? To me it sounded like there would finally be some real support for all the problems I am having to cope with right now ... But I really don't know who or what I will be getting into.

Can anyone please advise me what I may now be in for?

[Rerun]

I'm in Palliative care.  Basically, I wanted the path mowed to Hospice if and when my accesses failed or I get cancer and want to end my life by declining dialysis.  I didn't want that situation to occur and THEN have to find people and sign papers and God knows what.  So I'm in palliative care.  The papers are signed and the information given.  I have a lady from Hospice call me about every six weeks to see how I"m doing.  I have the phone number to call if something happens and I'm ready to throw in the towel.

Face it... we live 3 days at a time.  For the week I have my last minute of dialysis at 3 am Friday morning.  By Sunday night I'm ready to go get cleaned again.  I'm tired, I can't keep my eyes open and I feel bloated etc.   

I'm not sure in England.... how this works.  In the US, I'm in charge.

[smartcookie]

Hi Athena!

Where do you live?  If it is in the U.S., Rerun is right.  You can decide at any time to do palliative care or hospice.  Even in the States, palliative care means different things, so I would ask to speak to a social worker about it.  Having worked in hospice in South Carolina, palliative and hospice are generally the same thing when you are at home.  In the hospital, there are different sets of teams to help you. 

No matter where you live, you should be able to find a counselor or psychologist to help you out.  Even a social worker licensed to do private practice can help.  I understand that in England, you have to go through the NHS and you can have quite a waiting period to receive help (someone correct me if I am wrong).  In the U.S., you can go to your local mental health office.  In South Carolina, it is through Department of Health and Human Services.  You can also get a referral from any physician. 

[Charlie B53]

I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital.

If I were distrustful of a hospital, or Dr, I would have to find another.  Even if it meant having to travel a distance, rather than risk my health, and especially my life, to a place that I could not trust.

Opting out of treatment is always your option, but opting out rather than going to a different Dr or facility may not need be your only option.

This can be a very tough decision, either way.

If you ever want to 'talk' you can send me a PM.  I would be more than willing to listen.

[kristina]

Because of enormous mounting unresolved problems that I have (mainly other medical problems & the terror of having to deal with numerous medical specialists), I asked my original Neph for some sort of psychological support or counselor for overall support. He told me that if I was a palliative care patient (defined as a patient declining dialysis) he could get someone to work with me. Without thinking too much about it (as we were discussing my other pressing medical challenges), I just confirmed that I will be declining dialysis if/when it comes up in the future. He then told me, he'll have someone call me.

I am now wondering what the implications are of this? I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital. Can anyone offer any advice as to what sort of treatment a palliative care patient would receive? To me it sounded like there would finally be some real support for all the problems I am having to cope with right now ... But I really don't know who or what I will be getting.

Can anyone please advise me what I may now be in for?

Dear Athina,
Your story sounds very similar to my own. Like yourself, I was fighting day after day to stay pre-dialysis for as long as possible and like yourself, I became completely traumatized when meeting too many incompetent doctors and incompetent consultants. I tried in vain to receive proper health care year after year, without any positive outcome. Adding insult to injury, my end-state-kidney-failure was not even diagnosed for a long time, despite the fact that a (supposed competent) NHS-nephrologist-consultant watched my kidney-function slowly go downhill year after year, without ever mentioning a word to me or to my husband. He always told us that my (as I found out later) typical ESRF-symptoms were "a figment of my imagination".
My husband and I found out much later, just by chance, that "the ladies were not quite his cup of tea" and because of that he did as much damage as he possibly could...
I was only diagnosed with ESRF when my husband and I consulted with a private nephrologist who, at out first meeting, told my husband to bring me straight to an Accident and Emergency Hospital. I was dying because "my" ESRF was severely poisoning my whole body.
I then had to decide on the spot what to do and I finally allowed my husband to bring me to an A&E Hospital outside our district, in an effort to try and start anew. We then made sure that I had nothing to do any longer with all the former hospitals and incompetent NHS-doctors who traumatized me so severely and I then decided, with the help of my husband, to try and start anew again and that is how it still is. I have finally met a very helpful new NHS-nephrologist and a new, very helpful new NHS-family-doctor and they are both very approachable (and, believe it or not, they also appear to have a caring attitude). I also get on well with the dialysis nurses who attend to my medical care and I have also noticed, that since starting dialysis, I have been able to continue with my life surprisingly well. I have made a few interesting intellectual discoveries and also have been able to solve certain intellectual matters, which have been on my mind for some years. I also have continued to play the piano and I am finally able to read the score and play straight from the score. That was my dream for years and unfortunately was not possible whilst I was still pre-dialysis.
Just imagine: if I would have decided to stop it all and avoid dialysis-treatments, I would not have been able to give myself a fair chance and discover such wonderful results.
Being pre-dialysis “the real thing” of dialysis-treatment feels like something completely unapproachable and I know how hard you have tried to stay pre-dialysis for as long as possible.
But please reconsider now and give yourself a fair chance and try dialysis. Just give yourself a chance to try it out. You might be as pleasantly surprised about dialysis as I was. I remember when the new nephrologist told me at our first meeting, that he has there a "lovely little" dialysis-machine waiting for me  ...  I remember how totally horrified I was, in fact I even remember how my hair was standing up in horror and when he noticed my complete horror, he hastened to tell me that "we" still have to wait a little for that event, because "we" still have to arrange "things" beforehand like my tesio-access etc.
Anyway, here I am, waiting now patiently for "my" kidney-transplant to come along and I am asking you to please re-consider and please give yourself a fair chance and please give dialysis a try.
Good luck and best wishes from Kristina.

[Charlie B53]

A couple of 'bad' experiences with a particular Dr or facility can leave terribly deep mental scars that will effect future judgement and decisions.

Second opinions from a totally unrelated source can help one to make a far better informed decision.

Although many of us here at IHD have never met we have formed a bond, much like a Family, and we care deeply for one-another.  The thought of one of our own being mistreated sets my remaining teeth on edge and seriously raises my blood pressure.  The whole purpose of these forums are to SHARE information that the Dr's fail to tells us.  Knowledge is critical to making informed decisions, no matter what the subject, and in health care, knkowledge is critical.

If you are having a problem many of us would very gladly offer our opinion in hopes that yopu would make better choices in your treatment and extend your time with Family and Friends.

We are ALL Terminal.  We know this, but we Live with it.  Making the informed decisions we do to keep a better quality of the remaining life time we have.

If you cannot, or are afraid to open up in public then Please feel free to send a PM.  No one will spill any confidential information without your approval.  But we do care for you and will try to help you in any manner you will allow.

[Michael Murphy]

Athena you are facing the decision every dialysis patient must make every dialysis day.  To go or not to go.  This is a very personal decision.  During last fall I suffered a major heart attack.  I was unable to walk the 8 feet from my hospital bed to the toilet.  To put it mildly I was depressed.  Then I remembered I was a dialysis patient and if my life became intolerable I would stop dialysis and check out.  My condition improved but the 19th of every month I decide if I will go to dialysis for the next month.  So good luck with whatever choice you make.  This choice is one of the few real benefits of dialysis.







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[Athena]

I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital.

If I were distrustful of a hospital, or Dr, I would have to find another.  Even if it meant having to travel a distance, rather than risk my health, and especially my life, to a place that I could not trust.

Opting out of treatment is always your option, but opting out rather than going to a different Dr or facility may not need be your only option.

This can be a very tough decision, either way.

If you ever want to 'talk' you can send me a PM.  I would be more than willing to listen.

Thank you dear Charlie, your post cannot be appreciated more than what it is right now 

I have not received any call & have left a message for my Neph to call me & am just waiting for Godot right now. I am very naive and gullible when it comes to the medical industry & still have this residual belief that doctors are trying to save our lives. My gut feeling right now is that being labelled a 'palliative care' patient might mean that the illusion of everyone trying to save your life may become even more illusory than what it is in practice. In other words, they might be trying to shorten your life rather than try to prolong it.

[KarenInWA]

Athena - I thought you were hanging out in Stage 3/4 CKD. Is that no longer the case?

KarenInWA

[Athena]

Karen, I am in Stage 4 but I no longer have any certainty about these so called stages & eGFR figures anymore, based on how I am actually feeling.

[Jean]

Athena, I understand what you are feeling very well. I was diagnosed Stage 4, GFR 22 wow, ten years ago. I was terrified and would just as soon have died than go on dialysis. Now, ten years later, I am in Stage 4, GFR 25. It goes up and down and up and down but, so far, my lowest was 16 and then it shot right back up again.  I am now 78 years old. I know I can wait until my GFR is lower than it is now and make my decision then. In the meantime, I just keep a good eye on what goes into my mouth and the rest of the time, I live what life I have left. I think you are much younger than I am, but still, there is hope. Never give up (unless of course, you have to ).

[kristina]

... Has anyone heard anything about how Athena is getting on ?
Thanks from Kristina.

[PrimeTimer]

Athena, I "get" what you are trying to do (care for yourself) by telling them you are "officially" declining dialysis. Since doing that, have they put you into any sort of "program" where you are receiving better care or attention from doctors? Are you being given access to medical staff and labs you are needing or feel you are suffering any backlash for telling them you are declining dialysis? We all have to be our own advocates but my gosh, seems like you've had to jump through hoops just to get them to listen. You'd think they would appreciate a person who is trying to do so much towards their own healthcare. I think doctors would love you but wonder what kind of care you are getting now. Hope it is working out for you and that you'll update us. Take care. 

[Athena]

Hello everyone, I'm back into the land of the living. I'm sorry for being so absent for so long. Hope everyone's doing great & I'd love to hear from some of you old-timers.

Nothing ever really came of my little experiment to test the system by stating that I intend to decline dialysis in the future, if/when it becomes necessary. No one couldn't care less! It's kind of a relief to know that.

I've been keeping myself okay. I'm still eating a normal diet & getting around okay. I have relentless severe constipation now to contend with, the cause of which is suspected to be my BP meds. I'm about to undergo some kidney function blood tests, which will scare me - but I haven't had any done since July of last year! I am well & truly overdue for some blood work.

Wish me luck folks!

[MooseMom]

It's so good to "see" you again, Athena!

How are you feeling these days?  "Okay" sums it up, I guess, but how are you feeling both in body and soul?

I don't blame you for being scared about undergoing testing after so long, so I hope your results will show that your renal function is still good enough to keep your mind at ease.  Please let us know how you get on.

Take care of yourself, and thanks so much for checking in with us!

[kristina]

Hello Athena, I can't tell you how glad I am to "see" you again.
... Tell you the truth, I was fearing the worst and I am so relieved to "see" you back again.
Hopefully your blood-test will be alright and if they are not overly alright, then we just go from there and please don't forget, whatever happens, you are not alone and we are right with you ...
Best wishes from Kristina.

[Charlie B53]

I am truly glad to hear from you but you really do need to consider learning to eat a bit more responsibly.  Learning which foods place more work on your tired kidneys and which other foods may be substituted can greatly extend kidney function.

To an extent, we tend to eat what we learned as kids.  That's all fine and dandy for healthy people, but those of us with failing kidneys need to restrict a few things.  Like phosphorus, dark soda.

Long before blood sugar meters were invented I had an Aunt that was severely diabetic.  She told everyone she didn't care and was going to enjoy what time she had doing what she wanted.  Partied, eating and drinking, not only soda but alcohol and took massive amounts of insulin.  Kidney failure soon came and she passed at age 42.  This was mid 60's, dialysis wasn't an option yet.

[Jean]

Athena, so good to hear from you. I hope your blood work turns out to be great!!! You must be doing something right. Keep us posted, will you?

[LorinnPKD]

I am so happy to see an update from you!

The ramp to dialysis was so much scarier for me than actually being on dialysis.  Every blood test in the years leading up made me a nervous wreck.  I had ten years to dread it and deal with some awful doctors, and declining it really seemed like my best option, but I'm really glad I tried it and found it manageable.  Things are so much better now and life is still very enjoyable for me.  Knowing that it's entirely my choice whether to continue or not is actually weirdly reassuring.  Choosing to go every time is very empowering for me and helps give me purpose and focus.

And, ugggh, I had so many bad doctors!  I think very few of them actually have any idea what to do with you until you hit ESRD.  And since kidney health is weirdly squishy and subjective, not getting straight answers made me so nervous!  It makes such a difference to find one who will listen and work with you.  Nephrologists are typically not famous for their bedside manner, haha, but it does help to ask around and find a doctor you trust and respect.

Wishing you good news with your test.

[kickingandscreaming]

Welcome back.  Glad to hear you're still in the game,

A couple of corrections/clarifications on Charlie's post.

It's not "dark soda" that is the problem.  It's cola that has lots of phosph.  Root beer is a "dark soda" but not one you need to avoid.

Dialysis has been around a lot longer than the 60's.  When I was a child (in the 40's and 50's) my mother's secretary (she was a lawyer) was married to a man with kidney failure who I knew was on dialysis.  He had this classic "dirty" looking skin color-- a greyish tinge-- which I understood to signal that the process wasn't perfect (not that it is now, either).

[Michael Murphy]

Not all root beers are created equal google root beer phosphorus and check what you are drinking if memory serves me correct on brand has too much phosphorus in the can but by bottle is ok.  Athena some people have lived on the cusp of dialysis for years, if you feel well it is not time to start.  The blood tests you dread are not a good predictor of when to start dialysis bu do indicate that you should monitor how you feel.  My nephrologist spent 2 years telling me it was time to start but I waited to see a symptom before I agreed to start.

[kickingandscreaming]

Here's an article with the phosph/potassium in popular beverages,  The root beer I drink has negligble phosph/potassium.  So I will continue to enjoy it on occasion.

https://www.jrnjournal.org/article/S1051-2276(13)00181-7/pdf

[Charlie B53]

Dau has been buying Wife A&W lately.  While I don't generally drink any soda I will admit to taking a hit once in a while off hers.  Good stuff, Maynard. (In case anyone remembers the term).

The last two weeks I have to admit to splurging with a few cans of the Starbuck's.  I should look them up as since I like it it must not be good.  Isn't this another application of Murphy's Law?  I swear somewhere along the lines I must be related to that guy.

[Athena]

Thank you so much for your replies, Moose Mum, Kristina, Charlie, Jean, Michael, K&S & Lorinn. Hope to also hear from Rerun soon. I hope she's okay. If anyone's in contact with her, please let her know Athena says hello. There are others not named of course, it would too long a list.

The best thing to have come out of my recent experiences is a much closer bond with my primary nephrologist - he has been instrumental in helping me survive a few legal/insurance matters that had arisen for me over the last few months, by advocating for me. If he wasn't for him, I'd be in great financial strife. I've been homeless but am now settled in a nice new home. I can't believe what I've been through!

He is now really chasing me for my blood tests. I've asked him to just not tell me what my results will be. He said he'll think about it. (Of course, I won't be able to refrain from knowing what they are, once I do these tests! Ha).

Thank you dear Charlie for pointing out that I should pay more attention to my diet. You're absolutely correct. While living in temporary accomodation I had to rely on food that was provided. Which wasn't too bad but there was some binge eating on pizzas & salty crisps as well as ice cream & cakes. As a consequence, my ankles & lower legs did swell up from the excess sodium. My neph didn't seem too concerned though & advised me to tone it down (think he was relieved that I wasn't indulging in alcohol). I have put on a tiny bit of weight which seems to have gone to my abdomen so I'm working on losing this weight gain.

As for dark soda (coke), I only had cravings for it twice but didn't indulge too heavily in it. Boy is that a good 'pick me up' kind of taste during times of crisis!

A serving of cheese each day (which has largely replaced meat) & some dark chocolate are my daily vices. I've got to work on my diet as I am early Stage 4 (or at the end of Stage 3).

My Neph, though nervous now about my lack of blood results, believes I may be stable, given my apparent resilience in facing my homelessness crisis.

Guess I'm hoping that's what the tests will show soon.

Anyway, thanks again everyone for your wonderful messages. I look forward to seeing you again on this site soon.

(Oh & KareninWA & Cassandra, I haven't fogotten you! So many wonderful people on here!)

[MooseMom]

One last thing, Athena.

I truly do understand the dread that comes with having to have labs after a long time of not getting them done.  But do try to screw up the courage to do it, because once you know what your numbers are, you can be pro-active.

Although I had been diagnosed with fsgs years ago, it wasn't until I returned to the US and had a check up for insurance purposes that I saw how bad my renal function had become.  I was in stage 4 with an egfr of around 25.  I was so shocked because I felt fine.  My new neph said, and I quote, "I don't have much hope for those kidneys".  The world turned on its axis.

He immediately put me on cyclosporine to try to put me "in remission".  He put me on some bp meds to bring my bp to protect the kidney function I had left.  He put me on cholesterol meds because my lipids were truly record breaking.  Who knew?  All of those meds worked immediately and very effectively.  I was stablized for 6 years, and then as my disease suddenly started to progress, he put me on sodium bicarbonate to treat slightly high potassium and then the inevitable phos binders.  Long story short, between meds and a renal friendly diet, my kidneys held out 8 years longer than we expected!

So, my point is that if you get your labs done and your numbers show lower renal function, don't panic.  There is a lot you can do to get yourself stabilized, and I'm sure your neph will know just what to do.  In saying all of that, though, I do understand your worries.

Take care.