Feeling helpless


I've thought long and hard about posting on here as I know my partner would be less than impressed if he knew but I don't know where else to turn. Seeing as I'm new I suppose I had better start at the beginning!

My partner has CKD, has around 3% function and is currently on hemodialysis 3 times per week. He's in his late 20s and really struggling to cope, not that he will admit it! When we initially found out about his condition after a trip to A&E. There was a big panic and after a week of to-ing and fro-ing he was referred to the Outpatients clinic. I believed he was attending this but it eventually came to light that he wasn't. By this point he couldn't get out of bed in a morning. I eventually lost my temper (I'm afraid to say) and made him go to the doctors, upon which he was promptly rushed to hospital. The decision was made to start him on PD and all was "well" for a few weeks. Then he lost his job (as a result of being ill) and it was a slippery slope down from there. He got a new job but would frequently miss his dialysis as it made him so ill. Last summer he had a transplant from a close family member, which despite the best efforts of hospital staff lasted a couple of weeks. Getting him to do any form of PD after this was a nightmare, and just as we started to settle back into it he suffered from multiple bouts of peritonitis, ending up back in hospital again. At this point the decision was made to move to Hemo which is where we currently are.

We are still waiting to get back onto the transplant register as Psych want to see him before they sign him off but he wont go. We currently range from being on a high to "I'm going to die anyway so what is the point" on what can be an hourly basis and I don't know what to do. We are due to get married next year and I am desperate for us to have a honeymoon (which I know sounds shallow and selfish and a lot of other horrible words) but he wont find out about dialysis abroad and he wont let me speak to anybody. In fact trying to speak to anybody, or even attend a hospital appointment with him is impossible.

I'm sorry if this is long winded, and a bit whingy, but I truly am at my wits end and don't know where to turn anymore. I know it is his illness and I am in no way trying to detract from the severity of it. I guess I'm just hoping somebody has been where we are now and has survived!

Lucie J x

14 Replies

  • I really feel for you Lucie , but your partner really needs to help himself , and seems like he needs some counselling ... your Renal consultant should be able to help, I don't know from which part of the country you are , but most Kidney Carers are wonderful, but if he will not attend appointments there is not much they can do !

    I have a problem with my husband , but he is not young like your's .. I battle all the time to try to keep his spirits up, he also has a further problem, as he got an infection in his emergency Dialysis line .. and was very ill and in a lot of pain, as the infection went straight into his spine ! before that happened he was doing fine, and we had got set into our new routine, but this has just set him back ...

    So there is worse things than Dialysis, but I do stress get him some counselling ....

    AS for your honey moon . there are many places you can go, but I think he will have had to have been on Dialysis for a year .. Get in touch with Freedom Holidays .... holidaydialysis.co.uk tel: 01509815999

    I know it is difficult but hang on in there , we have all been through it and shed those tears !

    All the best

    PS... Also these might be of help .. kidney.org.uk Help line : 0845 601 0209


  • Hi luciej

    What a terrible time you are both having. Your partner is lucky to have you by his side. He desperately needs some counselling. But he won't go until he's ready I guess.

    Dialysis in your 20s is hard. Most people are elderly. They look ill. The prospect of life on a machine isn't nice and like your partner, I expected to die. That was 25 years ago and I'm still here. It's early days, he will get through this. Once his dialysis is stable he may be able to return to work. It is possible! Not working is demoralising. A failed kidney transplant is hard to deal with. You have both been through so much. It does get better.

    As for your honeymoon, you are not being selfish at all and he too will want to have a wonderful time. There is a whole list of places you can go . Tell him not to be afraid of dialysis here or abroad. Your unit may have someone who can help you arrange it together. It will be something for him to look forward to. If he wants to chat or ask anything, and you feel brave enough to tell him about this forum, he can message me on here. Good luck x

  • Hi your positive post as cheered me up, I worry every day that I am going to die I just cant stop thinking about it, I wake up every day feeling sick and depresesed. I have read a few negative post, people saying you dont live long once on dialysis, i have been told I will have to go on dialysis soon, and I have just gone live on the donor list. Have you had a kidney transplant or have you always been on dialysis. xxx

  • Hi goldenboy☺

    Love the name!

    Number 1-you aren't going to die! Not yet☺ I tell everyone I have too many people to piss off before I go anywhere ☺( excuse the language ).

    It's not all plain sailing. You may have needle problems to start with and it takes a couple if weeks to get used to dialysis. But you will be fine. You will have to follow a diet and fluid restriction. But if you do that, you should be able to work and live your life. Spend time with friends, go out and have fun. It keeps you sane. No-one will ever understand life on dialysis except other patients.

    I had a transplant. It was the worst time of my life. It never worked properly, despite drs best efforts. I spent 4 months in hospital before it was removed. The drugs have terrible side effects. I waited 16 years for a match. All I will say is don't put your life on hold waiting, and remember a transplant is just another form of therapy. It isn't a cure. Some last 15 years, others don't work at all. I'm sorry if that sounds negative, but doctors don't tell you that side of things. That doesn't mean you shouldn't have one. I've known patients who have had 3! I was put off though and took myself off the list. I'm happy on dialysis. I dialyse overnight at home. I have a full set up and self care.

    You can message me anytime if you want to talk. There is a private message bit. You can ask anything. You have a lovely girlfriend by the sound of it. However, she can't know what's really going on in your head. So please, try not to worry, stay strong. You are young and you will be fine.

    Take care and please message again if you need any support.

    Nikki x

  • I just thought -I assumed you were the partner of the lady who wrote the original post. If not, apologies for the girlfriend bit ☺

  • Thats ok I am a lady, my husband joined me to this site and gave me the nick name goldenboy I dont know why. Lol. I still loved your response to my first post. Did you comment on my reply. x

  • Yes I have replied. Oops! X

  • Hi again Nicolala, you seem to be very knowledgeable, do you know anything about other medication effecting your kidneys. I have always suffered with really bad migraines, they use to be really bad, I could be in bed 2 to 3 days at a time. Thats how I found out about my kidneys, my head ache got so bad one day I had to call the doctor, I just couldn't function. They did some blood tests and found that I had really really high blood and that I was at stage 4 with my kidneys. I have been up and down the hospital ever since It was a big shock I must say. As I said I am now at stage 5 but I am on medication for the blood pressure, although my migraines are not as bad as they were I do still often get migraines, the hospital have prescribed my co-odomol on repeat pricription and have just said not to take too many, but I do often worry about them efecting my kidneys, but I cant go without them because of my head aches. They told me just to make sure I dont take Ibrophen. But I worry about everything. What do you think please, xxx

  • Hi

    I'm not an expert, but drs wouldn't prescribe anything that would have a negative effect on your kidneys now. They would be changed to something else. High blood pressure can cause kidney damage, or be a symptom of it, as could the migraines I guess. The dose may need to be altered once you start dialysis, as your body is unable to remove them in the same way ie through urine. Dr's have to be careful when prescribing drugs to dialysis patients as they will build up in your bloodstream until they are removed by dialysis.you may find you don't take the bp tablets on dialysis days as well, as during dialysis blood pressure can drop. I understand why you are worried. You must be under terrible stress at the moment. As I said, I'm no expert, but I'll answer any questions if I can. Please don't be afraid to ask. X

  • Thanks for your reply, I am going to ask the hospital on my next appointment. x

  • Thank you so much for your reply, I am trying to stay positive, I must say it is hard. Some people are saying that dialysis puts a great strain on your body and that you dont live long once on dialysis. But others are saying if you have a transplant it often rejects and if it don't it will after a short time, and most dont last 10 years. I am 55 years old and have 4 children 2 of them are still young. I was hoping to live to a ripe old age to see me children grow up and hopefully be blessed to be here, if Im lucky to see grandchildren born. Its really scary the thought of dying. I just can't get it out of my head I want to live a normal life and be happy but its hard when you know that you are at stage 5 and nothing you do can stop what is coming. I don't smoke I dont drink and I'm not over weight, I am now trying to see what people are saying about what to eat and what not to eat to see that will help. I have a lovely partner and 4 lovely healthy children I just want to live to see them and my grandchildren if im lucky grow up. Its really kind of you to reply it has made me feel a little bit better speaking to someone that has something possitive to say about dialysis. Thanks x

  • I was one if the first people to get pregnant on dialysis and made the news as it's very rare. Wanting to see my child grow up kept me going. He's now 23.

    Dialysis isn't a natural thing to put your body through, that's true. Is does put a strain on your heart and can affect your bones. Certainly long term dialysis brings it's own problems, as I am finding out. But hey- I've broken all the rules for 25 years and I'm not stopping now☺. My aim is to get into the record books as the longest surviving dialysis patient!

    In terms of the success of a transplant -how long is a piece of string? There are no guarantees. Knowing your original diagnosis and how it could affect the kidney will be useful. The drugs given to try to prevent rejection are seriously toxic and can lead to cancer, diabetes and other delightful conditions. And you take them for the rest of the kidney's life.

    Regarding the diet, for now avoid salt and Lowsalt products. Drink plenty of water unless your fluid is already restricted, along with anything else you've been advised by your doctor. Once you are on dialysis, you will see a renal dietitian who will help. You sound healthy otherwise and this will be to your benefit. As will a positive attitude. My view is this: you can dialyse just to exist. Or you can dialyse and have a life. Either way, you have to dialyse. You may be tired all the time, I am, but you get used to 'running on empty' as I put it.

    I'm actually on dialysis now as I type this. I'm going out for a meal tonight. I'm fully conscious, I put my own needles in and I have the TV on ☺.

  • Hi Lucie,

    Keep strong. You are doing the right thing. I know these days are coming for me as my close one is ill with CKD 3 and we are trying our best to delay the progression. It is hard. Here are what I do to distract myself:

    1. I know that there are people living on PD for in access of 20 years therefore it is worth keeping strong and live with the hope. Nicolala has kindly shared her details here already so great person to connect to.

    2. There are development around Artificial Kidney (implantable) and it's due to go on trial in 2017/2018. More on this project is at pharm.ucsf.edu/kidney

    3. Regenerative medicine may work in future but it may be another 5 - 10 years we get to see anything concrete.

    Overall, give yourself and partner reasons to believe that there are progress being made actively and contemplate on getting through this hard time. There will be good time after all this.



  • Hi LucieJ Your partners CKD came as a major shock to both of you but for him it is a bit like grief. His life has changed beyond recognition for him. He is probably very depressed about it and hence the mood swings. I admit I have those too and quite often remind my husband and daughters that I won't be around much longer!! It's just me lashing out because I'm so frustrated because as long as I'm looking after myself I'm healthy enough. I did PD at home for 3 months and worked full time but I was exhausted and ended up in intensive care and not much hope but Im still here. I did however change to haemodialysis at my local renal unit and feel so much better. It's like a small community but everyone is in the same boat. You get massive support and there's always a Drs and nurses to give advice. I do mine from 7.45 to 11.45 am 3 days a week and I'm home for lunch. It's not everyday you feel like lunch. Some days you just want to sleep but some days I head out to the beach or a drive through the mountains. I can't go far but just bring out in the fresh air is good enough. I also got a wheelchair for those days when I'm not feeling peachy; something I swore I would never do but I'm so glad I did. Means we can still go out as a family or with friends and keeps life a bit more normal. I think your partner might benefit from haemodialysis in a renal unit. There is a dedicated social worker at the unit who will help and they can arrange dialysis if you want a holiday and there's no large items of equipment you need to bring. In fact there is a renal holiday resort either in the Peak District or Lake District (can't remember exactly which) but it takes care of everything for you. You stay at the resort and get you get your dialysis there and trained medical staff on hand. It's so much easier if you're at a renal unit to get the support and assistance you may need. I can no longer work and haven't been able to for nearly 4 years now but I am seriously considering going to university or college as a mature student to do a distance learning degree or course. Little physical energy required just some brain power!! Things will get better and your partner may benefit from a little anti depression medication in the,meantime. It's nothing to be ashamed of. We all need a little help now and again. Best of luck and best wishes to both of you.

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