Hello I'm new , my partner has end stage 4 CKD I'm from nz wellington

[LongLife8888]

Hi there , I really hate this disease , I have seen how it can just destroy people. their minds too! having no energy and feeling washed out. My partner is going to need Dialysis soon his efgr is 20 at the moment but rapidly declining every fortnight , 1 point down each fortnight.

He had prostate cancer and had Zoladex and radiation which I believe destroyed his kidneys , they didn't want to operate due to kidney function , but I never thought that this would actually destroy his life and he went down hill from 38 % function to 20 % in 2 years

He became depressed and suicidal , no one really told him the side effects of that zoladex.

I feel bad because I asked him to get the treatment. but I feel like its destroyed him.

I know some men can live with prostate cancer for years. He is now in remission but his kidneys took a beating. I feel like the doctors should have told us this.

Id like to hear people perspective on what kind of dialysis is helpful for them? My partner is almost 60 and does try and have a good diet , there is some wrong information on you tube regarding diets for CKD. he has had a triple bypass years ago. and 2 stents put in also. does this change the type of dialysis ? or is it a choice? I thought PD would possibly be better as it doesn't take all the good stuff out of the blood? am i right?

He would like to do this at home , he's always sleeping now or has gout all the time and scared to start allopurinol because of the flares.

I don't want to push him , but I feel like he's giving up and missing appointments on purpose.

we have 6 children together , I'm 38 and our kids ages are 4 -18 years old.

I'm so scared to lose him, his creatine is 288 and its just getting higher every week.

Can he choose to start Dialysis at this point? I don't think he tells me everything the nephrologist has said. I read his blood tests and I know they are bad his cholesterol is very high about 10 right now.

I really feel for all of you going through this right now

[Dialysis_Saves]

Hi there,

I think you should have your husband on Hemodialysis as soon as possible. Delay will only cause stress to the body and the other organs. Once he starts dialysis, everything will start falling into place. I have been on dialysis for the last 12 years and it has become a part of my weekly routine.

I have penned down my journey here, which has a lotof useful information to help my fellow patients.....on diet, exercise, supplements, etc.

medium.com/12-years-and-cou...

He needs to get dialysed quickly!

God bless...happy to answer any specific questions you have.

[Bassetmommer]

I am sorry you have to go through this. I lost my kidney function due to a prescribed and large amount of Ibuprofen. It is frustrating. Doctors stay in their lane and do not think about the whole body.

Hemodialysis is the best. It cleans the blood the most. But home hemo is even better. But he needs a fistula NOW. Because it takes months for it to mature. If you rush it, it can cause complications. I started 3 months after my fistula surgery and it was too new, but it worked. You can do chest catheter to start in center and then get the fistula and transition into home if you like. Please talk to the people at your local center and ask for educationand support. Best to you both.

[abbykat]

I really feel your uncertainly and fear and frustration. My husband had acute kidney episodes for years and finally went on dialysis. They kept trying all sorts of procedures to avoid dealing with the fact they really had no clue. Hemodialysis was depressing for him but he started feeling a lot better and for 2 years it worked out very well, from what I could see. He was 57 when he started it. I really relate to your feeling of helplessness. My husband also stopped communicating details from the doctor visits, and they kept putting him on a cocktail of drugs and he became very depressed. When he told the clinic he found the HD sessions depressing, the doctors referred him to a psychiatrist who immediately, after one 30 min. session, prescribed antidepressants. More drugs. He was better on HD, but still had a lot of issues...gout, itching, etc. He didn't improve so they added an anti anxiety med as well. Sadly, my husband became more and more depressed (even on 2 types of antidepressants and other forms of "relief), and he stopped going to HD regularly--once or twice a week maybe. He told me he was going, but would just drive around instead. Finally the clinic called me. I couldn't understand why he was getting worse. He eventually decided to go off HD completely.

If you can, try to keep open the lines of communication, but ultimately it is his decision to be vulnerable and include you. My husband "didn't want me to worry" and would say, "it's hard but okay," when it obviously wasn't. It's especially difficult with little kids because you are bearing the burden of parenting very likely. My husband was fatigued for years, and stopped being actively involved when my son was in 5th grade. Ultimately it is HIS life, and while you are important part of it, he is the one driving the car. Keep life as normal as possible and control what you can control. He has to want to live, and to own his condition---and to ask for your help when he needs it. If he starts dialysis it's very important that he goes as prescribes. Good luck to you....I can't imagine how afraid you must be right now. It's an additional job for both of you, and it really affects the children, so you just have to be there for them too. I will pray for you.

[Darlenia]

Dear Long Life. I'm so sorry to hear of your difficult journey. It's exceptionally stressful to face health issues like this one. I, too, have been in your shoes as a caregiver. Please know we're always here to support and lift you up. My husband also found himself on dialysis - first on hemodialysis (HD) and then he transitioned to peritoneal dialysis (PD). To get on the transplant list, the center recommended he switch to PD because HD, which accesses the blood vessels, could accelerate the calcification of the arteries needed for a transplant - a problem for some (like diabetics) can experience. PD doesn't require needles nor blood, it simply uses a catheter and a liquid solution. He was glad he made the change. PD was a much gentler and easier form of dialysis to tolerate. He preferred using a cycler at night while he slept. Others prefer doing ambulatory PD during the day. Thankfully, a year later, my husband received a deceased donor kidney transplant at age 71. A transplant is considered the best solution for kidney failure and may be something your husband may qualify for in New Zealand. Age is no longer an issue in some countries. It's well worth checking out. Some individuals actually manage to get a "preemptive transplant" and never go on dialysis, which is best of all. In the meantime, it's good to understand the the various forms of dialysis so you can make the right choices in discussions with your husband's nephrologist. This link is helpful in explaining them and it also includes a nice questionnaire to help you confirm the right decision. lifeoptions.org/living-with... I'm reasonably sure these options exist in most developed nations. It's nice to have choices. We are all different with different goals and needs. Please take it one day at a time, one step at a time. And please don't forget to take good care of yourself too during this difficult. If you find yourself sinking under the stress and work, please schedule an appointment for yourself with your own doctor or therapist. Don't hesitate to schedule a day for yourself. It's amazing how helpful that can be. Sending lots of encouragement that you and your husband will find a direction that gives both of you a sense of control and peace sooner than later. Hugs!