Giving up

[Quita55]

I've been doing haemodialysis for a little over 3 years. And I have been like clock work never missing a session. But lately I'm wanting to give up. I'm struggling with my dry weight and I was wondering if anyone has felt like this or is going through this. Quita55

[bumblebee_tuna]

Hi Quita55, depression is very common in dialysis patients, we all go through phases of difficulty. Are you seeing a therapist or getting medical attention?

[Ziggydoodah]

Hi QuitaI've been on dialysis for 27 months and yes I get it. Believe me, you are not the only one. I think we all have these thoughts at some point. What exactly is the issue with your dry weight? Do you feel its too low and they are taking too much fluid off you? If that's the case, there is a machine (sorry don't know the name) that they attach to your fingers and feet, that can measure the amount of fluid accurately, so giving you a more realistic dry weight. I'm based in Scotland and I don't know how they work the dry weight sometimes 🙄🙄. In my experience in the unit, they constantly have to review it, as lots of factors can change it. What are your vitamin D levels like and iron etc. If they are too low, it can cause depression.

Are you on dialysis for life or do you hope to get a transplant at some point? I know of two patients, who got fed up with dialysis. One refused to come for about 4 weeks. We expected him to die quite quickly. Nope, he strolled back in and continued for 2 weeks. Then went awol again. This cycle continued for months. A few of started to think, do we really need all these sessions. Can't we reduce them, if this patient is still functioning etc...it was getting a bit infuriating having to attend hospital, when some people just came in, when they felt like it. One afternoon, he was no show...again. Turns out he had been found dead at home. It had all caught up with him. I discussed it with one of the nurses. She said this happens a lot. People missing sessions and thinking they are OK, only to suddenly be found dead. Believe me, it was a huge wake up call for us all.

Is there a Councillor at the unit you can talk to, in more detail? We don't have anyone at our hospital. There really is a lack of mental support, when it comes to dialysis. Hopefully if you get your dry weight sorted, then you will start to feel a bit better. Keep us updated and remember you are not alone. We are here for you x

[Snowcountry]

I have been on HD for 6 Months. I believe I know how you feel. I have certainly been there. But...I am writing this with my left hand in my hospital room as I just got surgery for broken elbow and clavicle. And I am receiving HD 3days a week at the same hospital. Because my right arm cannot move in a cast and my left a fistula arm can not be used I am getting all injections and IV in my ankle. A location that is quite painful. My point is simply that things can get much worse than just being depressed over being a dialysis patient. Seek counselling if possible.

[Bassetmommer]

HI Quita, I think we all get it. I am less than a year on and often think...."fuggit!" It is difficult at best. And when you are not feeling like you are benefiting from it, it makes it even worse.

Do not beat yourself up for feeling frustrated and depressed. Try to work through it and find resolve any way you can. Talking to people, like us who get it. Talking to people who have never sat in a chair can only frustrate you more. No one can understand what dialysis does to you unless you are doing it. I have days when I am doing great and then.... not so great.

Tell us more about the struggle with dry weight. Does it fluctuate?

I found having an activity while on makes it easier. I play virtual cards. I read sometimes too. I look forward to that. I am doing home hemo which makes it possible to do dialysis when I want. However, I am sticking to how often I am supposed to do it.

Give yourself a big hug from all of us. Our shoulders are here for you.

[WYOAnne NKF Ambassador]

You will be so glad that you went through dialysis when you get your transplant. I am 24+ years post-transplant and have leading a fantastic life. It is truly a 2nd chance at life. I had a rewarding career and have done a lot of traveling. Life is pretty special!

Have you looked into receiving a kidney from a "living donor"? I know here, the wait for a transplant from a deceased donor is 5 years

[horsie63]

have a good cry and count to 100 before you make that choice. I started PD in Feb 2023z in May I developed an all over rash that nothing helped. Then in June I lost my appetite and started having tremors. This caused me to fall and hit my head. Aug I had to go into the hospital. At this point I was semiconscious and almost died. After 3 weeks they got a chest catheter to work on the left side…the one on the right side didn’t work. After a week I was back in the hospital because of fluid in my right pleural cavity. They tried a manual drain and when that didn’t help they put a tube in and tried that. It came out after a week. Then they did video assisted thoracic surgery and put a large tube in. That was in for a week and because they cut some nerves it still hurts.

I keep having “stuff” happening and just quitting has crossed my mind but I want to see my daughter and granddaughter who live far from me. I keep praying for a transplant so I can visit them.

Is there something or someone you want to see? My daughter and granddaughter are coming to visit in Aug.

keep going and when it gets hard talk to someone.

[bubbaboo2]

Hello sweet Quita 55 I know just exactly how you feel I was on dialysis in 1994 for 2 years, then at the age of 35 got a donor transplant. My life was back again, I could drink and eat again and I had so much energy. My transplant lasted 27 years, then I lost my first born son and I lost all hope. So in September of 2020 I ended back on dialysis for 3yrs and 9 months. Then my husband donated one of his kidneys and although we didn't match I moved up the list. I just got my second transplant on June 28, 2024. I am currently in Utah for the next month. I am telling you this hoping you will get on a transplant list or talk to someone about transplantation. I am 63 years young and I feel so good again.....NEVER EVER GIVE UP!!!!!!

Bubbaboo2

[LeslieK]

I tried it for my family. I did 18 months and I knew I was at peace with quitting at the end of summer, 23 months. Then I had a transplant and those lost years are far behind me hidden deep in my past memories.

[Beachgirl32]

understand how you feel I have had so many mishaps I was on of dialysis then got fungal infection only small percentage get so had to go on hemo bu dry weight is so low I told them I haven’t had much of appetite and I’m just getting it back so sometimes when I come back after three days days cause my hemodialysis is Tues Thursday and Saturday on Tuesday my weight is up and they don’t like it and of course that mean more fluid is taken off and this is when my bp drop my body doesn’t like that much fluid told them they need to let me get back to my normal weight

[Benjamin124]

Many on haemodialysis struggle with similar thoughts. It's important to talk to your healthcare team about your struggles. You matter and support is out there.

[PeaB4YouGo]

3 YEARS?? I have those feelings at times, and I'm only 3 months on the machines!!

You are not alone. Take all the advice you can get, and stick with it. I know the road looks dark, and I'm not going to go on about the light at the end of the tunnel and all, but there really can be hope. Patience and time are not always easy to come by, but it pays off most of the time.

I can only hope that my time on the UNOS list is short and sweet, and someone gives me a nice, healthy kidney (and, they could throw in a liver and I wouldn't complain).