Refusing dialysis

[Ladysingsblue]

Anyone has chronic kidney disease and experiencing stomach pains?

Refusing dialysis, because don't want the burden of leaving house 3 days a week to go to a center.

[FlowerPreciousLover]

Hi, Ladysingsblue, I'm not near the dialysis stage yet and haven't the chronic stomach pains you are experiencing. Have you checked with your doctor for what might be the cause?

Deciding not to go for dialysis would be a huge decision for me. Are there other reasons you are deciding against it? Have you looked into having at home dialysis?

[Ladysingsblue in reply to FlowerPreciousLover]

Thanks for your response, I'm actually getting this info for my Significant Other, he's 64 and the one with End Stage Renal Failure. What frustrated him about the Dialysis was when he got home from the hospital he was tired and wanted to rest. The phone started ringing off the hook, Doctors were setting up all these appointments against his wishes. We got calls from the Vein Mapping office; the surgical office wanting to set up a Consultant visit; the educational team; the Renal Doctor trying to schedule an appointment, and they had also schedule him to go see his PCP; 14 calls in all. He asked me to tell them to stop calling, which I did. He's also has Heart failure and Diabetes and was told he might not qualify for a transplant. And that life expectancy on Dialysis could be 3 - 7 years. So this is why he refused.

[Hidden in reply to Ladysingsblue]

Have you looked at peritoneal dialysis, you can do it at home with ease, no travelling to the dialysis centre, no needles and less fatigue, it’s really easy to do and is a lot safer for the cardiovascular system and easy on the heart.

[Jayhawker in reply to Hidden]

I decided to start with PD dialysis when the time comes. Naturally, I’m a little anxious as I wait to be told it’s time to start. But I’m prepared to wrap my brain around dialysis, get through the training and start dialyzing nightly at home. I’m really just waiting for my nephrologist to say it’s time. I expect to feel and function better once I start dialysis.

Jayhawker

[JandD4ever in reply to Ladysingsblue]

My husband refused heart bypass surgery and dialysis 2 1/2 years ago...said he had lived his life. They told him what would happen and they were right. He had a heart attack 4 months ago and he called an ambulance. The next day in the hospital they started dialysis and heart bypass the next week. He is driving himself to dialysis 3 times a week and seems to be happy to be alive at 75. He is now thinking about switching to the home dialysis. Hoping all goes well for the two of you.

[Bassetmommer NKF Ambassador]

Lady,

If you are to the point and need dialysis and you are refusing, you have signed a death warrant. Stomach issues are just the beginning. I hope you realize that. Your body is going to fill with toxins and you will be poisioning yourself. Also fluids will build up which are going to cause your BP to increase and stress your heart and you will have a heart attack. You will be downing from within as your lungs fill and you will not be able to breath. Dying from kindey disease is painful and horrible. I know, I watched my father-in-law do it. He refused dialysis at the end. But he was 94, had a heart condition already and other issues that were not going to correct themselves. He was in hospice and even with the medications, it was awful.

Do you know that you can do dialysis at home? There are more and more ways to do dialysis but you need to find out about them and get prepared.

[Ladysingsblue in reply to Bassetmommer]

Thanks for your reponse, please see my reply above to FlowerPreciousLover.

[Jayhawker in reply to Ladysingsblue]

I can definitely relate to the barrage of phone calls from medical personnel. I live alone and am the last person living from my family. So I definitely deal with all the phone calls myself.

I’m glad that you’re there for your husband. That is definitely a big help!

Have the two of you attended renal failure education classes? I found those to be most helpful. They gave me the information I needed to make decisions regarding what I wanted to do for my renal failure treatment.

Jayhawker

[KidneyCoach NKF Ambassador]

I'm so sorry for what you are both enduring. All those calls must have been overwhelming. Please consider classes through DaVita or Fresenius. Even National Kidney Foundation, AAKP,American Kidney Fund have great classes and online education available. HOME Dialysis could be an option. Sacrificing 3 mornings or afternoons per week to keep on living really is a fair compromise, but emotions at this point are interfering with rational thinking. Home Dialysis Central also has My Dialysis, My choice and great educational modules at kidneyschool.org

As for life expectancy it applies to large groups not individuals. I'm 62, been on dialysis almost 19 years. I have more than a dozen friends on dialysis more than 20 years. It is doable. Take things one step at a time.....baby steps, just baby steps.

Blessings

[brynat2 in reply to KidneyCoach]

I just want to say you are so encouraging, it's amazing that you have been on dialysis for 19 years. If you don't mind me asking do you go to a center for treatment or do you do dialysis at home? If we don't receive a miracle in the next 4 weeks my husband will be starting dialysis, we plan on doing it at home. We have to train for 3 weeks or so before he can start. He had his fistula put in 3 years ago. His creatinine is 12.4, and the doctor has said he's in the danger zone at this point, so he decided to go ahead with dialysis. He will be getting on the transplant list after the 1st of the year. Thank you for being here for those that need your encouraging word.

[KidneyCoach NKF Ambassador in reply to brynat2]

Aww too kind. Yes I have been on home hemo the whole time, well except for the first 7 months and a month here or there for hospital visits, moving etc. I consider home dialysis the very best option (other than transplant) for longevity and quality of life. I'm happy to answer any questions.

Your husband's creatinine is quite high. Hoping you do well with training and treatments. Baby steps. If you feel overwhelmed, remember to take baby steps. Blessings

[brynat2 in reply to KidneyCoach]

God Bless you! I may reach out to periodically, support purposes only. If you don't mind m asking, is there a reason why you didn't chose a transplant?

[KidneyCoach NKF Ambassador in reply to brynat2]

But I did choose to be listed for a kidney transplant. In fact I was listed nearly 10 years at a center with an average wait time of 27 months. I waited nearly 10 years and never got a transplant. Due to 5 pregnancies and nearly 20 transfusions my PRA levels (antibody) were at 99-100% making me a difficult match and Type O blood even more difficult. I went off list. I am in the process of attempting to re-list but I'm older now with more health issues so its a toss up as to if I'll be able to list or not. I'm also in the process of a big move so it takes a back seat for now.

[brynat2 in reply to KidneyCoach]

Thank you for replying. I wish you the best. Hopefully it will work out for you. It's a relief to hear that you have done so well on dialysis for so long. That's truly encouraging to me and my husband.

[brynat2 in reply to brynat2]

I wanted to seek your advice on this. Again my husbands creatinine is 12.4, he only has a few symptoms. He’s a little tired but not so tired he can’t function. He still works every day, mows about 12 yards of course he’s on A riding mower but still not slammed when he gets home. He has itchy skin and trouble sleeping, his appetite isn’t very good but still eats a good dinner. The doctor said it’s time for dialysis but how do you really know it’s time or not? I worry about how he will feel on dialysis some say he will feel worse others say better. I saw an article where it’s possible to have a stent put in the kidney to open up the vessels but I’m not sure if that would help because I really don’t know what has caused his kidney failure beside hypertension. Do you have any advice how you know when is the right time to start dialysis?

[FlowerPreciousLover]

Your guy is so lucky to have you supporting him! Kudos to you. I would be overwhelmed by such a barrage of phone calls from medical staff under any circumstances. Good heavens! Already tired from the hospital visit, it is no wonder his first reaction was Nope, No Way ...!

However, I hope you will share with him what others have written and that he will agree to consider what has been recommended. As with any new journey, taking those first steps are hardest but as Kidney Coach says, taking baby steps can make a world of difference for you both.

[Ladysingsblue in reply to FlowerPreciousLover]

Hello Everyone!

You don't know how much all of your comments mean to me. I really appreciate all the information and blessings! I will read them to my hubby and see how he feels about it now that it's been a couple of weeks since the hospital stay.

Thanks Again and Bless You All!

[Hidden in reply to Ladysingsblue]

I have made the same decision as your hubby. While I'm not as far along as he, I share some of his sentiments. I'm 68 and over all the hassles of fighting Dr's with my multiple health issues.

While the blood fills with toxins the fact is the toxins effectively anesthetise you in the end and you slip away. My mother died in front of me from kidney failure so I know exactly what I'm in for. She refused dialysis and a transplant. I have also experienced total kidney shut down, I didn't know it until the next day when I drove myself to the hospital, 18 hours of toxin build up and still going, just! Five days in intensive care to get them back up and running. Apparently I would have not seen another day had I not gone to the hospital when I did, and I would have been none the wiser.

There is always a chance your hubby might change his mind, as I might. I can't rule it out, circumstances do change. Ironically I live less than 4 minutes from the local dialysis unit.

I don't think many people understand what it is really like having multiple health issues to deal with all together all of the time, unless they experience it for themselves. It can wear you down to just wanting freedom, however you have to take it.

I empathise with your hubby but would suggest he consider all the options so he makes an informed decision. The dilemma I face is what it will do to my wife. At the end can I actually destroy her life to gain my freedom, health not marital, although one surely follows the other.

[KidneyCoach NKF Ambassador in reply to Hidden]

I can certainly relate to your situation. In regards to your choice, I will say many , many people have chosen to continue on with dialysis....to save their family from sorrow. Sadly this prolongs suffering for everyone involved imho. We must each do what we feel is right for us excluding all people around us. I know I would rather a loved one stop Dialysis than continue suffering if that were their choice. While most people say "don't give up", i don't feel as it is giving up. While dialysis is a human created way of extending life and many feel God inspired, it is nonetheless an extension of living. Without it the natural process is death, how is that giving up? But I digress.

Each individual must make choices for the future which is best overall AS, BY, and FOR themselves individually. Those left behind, can and do grieve, just as they would ANY death of a loved one. Remember that. They will grieve just as they would with any other death. It is a natural response. Best wishes and Blessings.

[Kidneybongos]

I’m in the same boat as far as doing dialysis. I realise most on this site are doing dialysis but some decided not to and should be respected. Stomach pain could be the medication you’re on. I get them with prednisone and was prescribed omeprazole to have before food which has helped.