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Author Topic: Officially am declining dialysis  (Read 808 times)
Athena
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« on: July 11, 2017, 07:48:19 AM »

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?
« Last Edit: July 18, 2017, 06:29:03 AM by Athena » Logged

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Rerun
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« Reply #1 on: July 11, 2017, 08:02:47 AM »

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.
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« Reply #2 on: July 11, 2017, 11:10:41 AM »

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. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Charlie B53
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« Reply #3 on: July 12, 2017, 03:33:38 AM »

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.
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kristina
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« Reply #4 on: July 14, 2017, 03:16:34 AM »

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. :grouphug;
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Charlie B53
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« Reply #5 on: July 15, 2017, 06:16:03 AM »


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.
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Michael Murphy
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« Reply #6 on: July 15, 2017, 06:29:30 AM »

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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« Last Edit: July 16, 2017, 11:25:41 AM by cassandra » Logged
Athena
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« Reply #7 on: July 18, 2017, 07:06:58 AM »

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  :grouphug;

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.
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KarenInWA
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« Reply #8 on: July 18, 2017, 10:06:41 AM »

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

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Athena
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« Reply #9 on: July 18, 2017, 10:31:20 AM »

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.
« Last Edit: July 19, 2017, 07:50:30 AM by Athena » Logged

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« Reply #10 on: July 18, 2017, 11:27:56 AM »


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 ).
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One day at a time, thats all I can do.
kristina
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« Reply #11 on: August 09, 2017, 01:49:47 PM »

... Has anyone heard anything about how Athena is getting on ?
Thanks from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #12 on: August 20, 2017, 07:47:21 AM »

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. 
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He went back to doing in-center July 2016.
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