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Not sure I want dialysis

Posted , 6 users are following.

LiliBelle
LiliBelle

New diagnosis of 3B failure. As a retired ICU RN, I have have taken care of many HD patients. 30 years ago, I decided I would never do he because of the frequent hospitalizations, blood transfusions, electrolyte problems, shunt problems, and lifestyle changes. This was unexpectable!  Now I’m faced with the actual decision and my decision has not changed. My family doesn’t support me. I am steadfast in no he. Any suggestions?

0 likes, 13 replies

13 Replies

  • marj01201
    marj01201 LiliBelle

    Posted

    That's a tough situation.

    My father was on in home HD dialysis about 30 years ago. I have very bad memories of his experience. So I have always thought that I would not pursue dialysis should I be faced with that decision.

    Now, 30 years later, my creatinine is 2.7 with an eGFR of 18. Pretty clearly I'm going to have to face this decision at some point in the not too distant future. 

    I'm single with no family left living. This means I can make the decision solely based on my preference. I began participating in this forum specifically to hear other stories about dialysis and other treatment options.

    While I can't be sure what I will decide when the time comes, I have identified what is important to me--what I consider to be quality of life issues. If I can maintain many of those activities while experiencing dialysis, I may well decide to try dialysis.

    I'm definitely thinking about PD dialysis. I'm much less interested in HD dialysis.  But I find that I've reached a point where I would be willing to try PD dialysis. After all, I can discontinue it at any time if it just isn't working.

    But a very difficult decision. I can't imagine how much worse it would be if I had worked in your line of work and seen what you have seen.

    Marj

    • LiliBelle
      LiliBelle marj01201

      Posted

      I have done so much reading since being diagnosed. I didn’t know how much I didn’t know. I don’t think I have any contraindications for pd and may consider this   I’m hoping that major diet changes will keep my GFR around 35. The idea of no chocolate or pizza is a real obstacle. I live on dairy products. A lot of grief goes with this disease and not just about death 
    • marj01201
      marj01201 LiliBelle

      Posted

      LiliBelle,

      I know what you mean. For me it was the major reduction in vegetables. I used to eat 6-7 servings of veggies a day. But those days are definitely gone now.

      My current nephrologist originally suggested PD dialysis for me. I've been through the Stage V renal failure patient education classes. They included a lot of information about PD dialysis as well. I've also talked with several who participate on this forum and have had or currently receive PD dialysis. It's based on all of this along with my personal quality of life goals that lead me to believe that PD dialysis may well be a good choice for me.

      BUT, I haven't tried it yet. As one of my dad's care providers I am convinced I can learn to follow the PD dialysis protocol. My dad did not get a single infection during the years he was on in home HD dialysis.

      However, I agree strongly with what others have said; this is, and must be, your decision. You've got to be comfortable with it. I certainly supported my dad's decision. And later when my mom decided not to pursue more treatment for her cancer I supported her decision. I still remember her writing her definition for quality of life on the form in the hospital. She did not want to be resuscitated. She asked me if that was all right with me. I responded by saying that I didn't think that was the right question. I then said that the right question was whether that was what she wanted; was it all right with her? She nodded her head affirmatively.

      I hugged her and said that that was the answer.

      So this has to be all right with and for you.

      And, yes, I feel like I've read just about everything I could get my hands on about dialysis. I really should be given an honorary medical degree🐶

      Marj

  • stephen_25073
    stephen_25073 LiliBelle

    Posted

    Lillibelle first let me say I'm sorry to hear your troubles and I know it's a tough one. I understand you're steadfast in your decision. The only thing of hope I could offer is that I had haemo dialysis and had a fistula created in advance of needing dialysis. There are many positives to be taken from having dialysis. I know that's hard to believe but I found my fellow patients were in the same situation as I was and we all formed a bond and I enjoy to this day some lovely friendships with those who are still needing to attend. I also formed great working relationships with the nursing staff and could approach them with any problems or concerns I had. After about a month after starting dialysis I found on my days off from dialysis I found myself feeling re-energised. I don't know what age you are or how long you've been retired but there's also an option to go on the transplant list but I'm guessing you'll know all of this given your clinical background. In summary id recommend dialysis and you will enjoy years of life to come hopefully. I had a transplant 3 months ago and because of my experience I would always advocate for dialysis. Also having a fistula created is (for me) the best way to go. I would say however I know very little about PD but wasn't an option for me as I also have Chrons disease. I DO wish you well and hope you reach a decision that is good for you.

    All the best Stephen

  • fran32391
    fran32391 LiliBelle

    Posted

    LiliBelle, I support your decision, no matter what you deside. Years ago Dad went on HD and I totally supported his decision, a year and a half later he changed his mind and went off of it and chose Hospice, again I supported him. He thought I would try and talk him out of it but I told him I would never question his decision. I told him that only he could deside since it was his body not mine. I understand where you are coming from, many times friends and family just can't imagine life without their loved ones and because of this they feel they have a right to deside for you. Take HD or do as you wish, its your body, it's your life. I miss Dad and even though I realize he could still be alive had he not stopped HD, I still respect his wishes. I know my kids love me to death and it is the reason they support and respect the choices I make. Makes me love them even more.  Dialysis or Hospice, its up to YOU and only you.

    Stage 4 CKD gfr 23

    • LiliBelle
      LiliBelle fran32391

      Posted

      It’s the right decision for me. My adult kids need time to digest my decision. I had 35 years of nursing experience to ponder and make my decision. They think it’s due to my history of depression but this isn’t a back door to committing suicide. They love me. They are both smart and successful and don’t understand but it won’t change my mind. Thanks for understanding and giving your support

  • john85166
    john85166 LiliBelle

    Posted

    An author once said optimism is a dicipline we need to practice. Without hope life is pretty grim. How can you be sure a transplant will not happen. You still have some time to go. Perhaps an artificial kidney will be possible in a few years. My idea of quality of life is just a long losted dream for me at the moment so I too am very confused. I will give dialysis a go and then decide.
    • marj01201
      marj01201 john85166

      Posted

      I like your comment about optimism being a discipline that requires practice. Thanks for sharing it with us!

      Marj

    • LiliBelle
      LiliBelle john85166

      Posted

      At 66, I’m probably not a transplant candidate. I hope you’re right about the future of an artificial kidney. I have had a cardiac pacemaker for 39 years (a pregnancy complication) and a bladder pacemaker for incontinence. So what’s one more device. I hadn’t thought about technology advances for an artificial kidney. Thanks for a different perspective. 
  • mari11869
    mari11869 LiliBelle

    Posted

    I often think about dialysis. I believe life is beautiful until it is time to pass. I will not have dialysis. I enjoy life and look forward to the days I have left, but do not want to be labored into constant medical care. I had breast cancer and refused chemo and radiation. I did have a R mastectomy. That was 7 years ago and so far so good. The CKD and Nephrogenic Diabetes Insipidus are the health challenges I face today. If it is time to go, so be it. I respect your decision as a health care professional. Is the end stage at least peaceful? 
    • fran32391
      fran32391 mari11869

      Posted

      Mari, I also made up my mind many years ago. I was a dialisis tech. I was able to listen to my patients and the caregivers. Never dreamed it would be me someday, but it is,  so I will dance through life and enjoy everything it has to offer for as long as I can. I follow my Drs instructions and make as many good memories as I can to leave behind. I've also chosen to go without dialisis.

  • fran32391
    fran32391 LiliBelle

    Posted

    Peaceful end stage, peaceful dead of CKD? If you search the internet or read medical papers you will be able to see the steps one takes. But it depends on how much and for how long a person is willing to go through. Choices we make quality, quantity, AND the same goes for the demand made on caregivers, read their posts for a peek at their life also. We are talking about a lot of things that come into play. We are the ones that need to decide, not our families, partners, doctors,etc. Our bodies our choice. We have that right. The end will come someday for those on dialysis and those that don't do dialysis, death, the big decision is how we want to live until then.

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