hi everyone, i'm new on here. I have renal tubla acidosis, which means that the kidneys are excreting my potassium causing hypkalemeia not excreting the acid in my body, which in effect lives most acid in my body, with acid erosion's in my teeth, blood and bones, causing all kinds of symptoms, i also have Nephocalcinosis which is a kidney stone disease, kidney stones are always embedded my kidneys and a had two emergency operation back when i was fourteen 1987 one blocked in the urethra and the other in the kidney. Since then i have only had stages of kidney stone pains and a few passing with severe excruciating pains. I have managed to live a normal live have got married but divorced now and have four grown up children and three grandchildren. But sadly in june this year i was diagnosed at my Hospital Renal Clinic with End Stage 5 Kidney failure, which was a complete shock and then told me i would need to go on dialysis as i am only 9-14 kidney functioning, and to go on the transplant list. My brain just went numb and was in sheer fright, i thought at my age, i wouldnt never have to succumb to this unless i was quite elderly.

I have now had to have a two part procedure operation to form a fistual, one on the 22nd July and the other one 4-8 weeks later so rougly around end of September or maybe sooner depending on the maturing of the vein and artery maturing together. i see my vascular surgeon and renal clinic again on the 1st September. I know that its not the end of the world but i just feel that no one in my family really realises how seriously ill i am, or they are blocking it because it is hurting them too and are afraid to let out their own emotions towards me. I am since last February had to submit to a wheelchair now due to complications from my renal disease from birth, which i tried so hard to stay upright walking with crutches, walking frame, but my arm joints just didn't have the strength and the pain in my lower spine would be excruciatingly painful. So when i was admitted last year in January for constant Pancreatitis, that went on for about two years and the doctors where baffled themselves, but i was keeping a secret, i was pill popping non stop painkillers of very strong natures that they were prescribing me and i was misusing them to keep me upright. So after the last bout of pancreatitis and in intensive care, i had a word with myself to stop all the tablets and to get my daughter to help me control my medication even if i was in a lot of pain. While i was in the hospital i told the drs if i could see a physiotherapist about my pain and osteomalaci, a physio came and assessed me and referred me to a wheelchair specalist, who in turn assessed me and was eligible to have one, the sporty flexible type. I was fine for a few weeks but the constant use in my arms aggravated my weak joints now i have to be assisted.

my main worry now is when in a few weeks maybe a month and half or so, but eventually this year i will have to go on dialysis, and when i was on the dialysis unit the other day seeing a nurse about a dressing for my operation wound, i went right down the corridor into the dialysis ward and in my head it freaked the hell out of me, i said to myself that will be me in a couple of months time!! I have been suffering with moods fluctuating up and down with depression, and feeling really sad and burdened that i may die and it really scares me. thankfully i will be seeing renal psychiatrist/psychotherapist on the 5th of September, so i am really hoping that this will be productive not just with my kidneys but with my whole medical conditions i have to suffer with and the pain and the emotion and the personal turmoils i am going through in my life, i cant explain because it woud just take too long all i can say is my ex husband constantly harrass me not accepting our relationship is over even tho we are divorced and my housing issue, not suitable at all or disabled friendly to get in and out of the buildig and being on the fifth floor for a year since i moved in the lift has been malfunctioning and nothing enough is being done to deal with the problem and on top of that their Health and Disabilities Assessment from my Housing Organization dont see this as a health priority, are they stupid!!! anyway that is just the tip of the ice berg, just a little taste of the things i am going through at the moment. I came on here because it sounded so interesting, with so many different communities u can follow and relate to if you have the same conditions or symptoms and being able to post your side and hear other peoples side to and get together and advise one another in our times of need and feeling like life is at an end :( im glad i joined if gives me an uplift to hear others in the same situation, but i am still very worried about the dialysis treatment i am going to have in a couple of months, will it hurt, will i get infected, will i get withdrawal symptoms so many questions and when i see the doctor, they all get forgotten about because i am distracted about where i am in the renal unit and my brain just goes numb!! Next time i take a list that way when i freeze from fear or worry i have the questions on paper :) good note to self lol. i look forward to hearing everyone else's strories, and i hope mine hasnt been to dragging and ranting, i'm just explaining myself as i am new. so take care everyone xx

8 Replies

  • Hi sakinah, so sorry you are going through all this but i just wanted to say i know just how you feel, my kidney disease has been very sudden onset and the problem with mine its very very rare (only 10 of us in the country) up until i got my diagnose i felt fine, then i was put onto a cocktail of meds and have never felt worse in my life, ive got my scan in 3 weeks to get my fistular sorted, the meds at the moment seam to be holding my kidney function at about 13% but sometimes it feels like no one especially my husband does not seam to realise how ill i am, i find standing or walking for more than 10 mins agony (due to massive water retention) i have days where i can just about make it to the top of the stairs before im struggling to breath but if i ask him to do anything around the house he moans.

    I know how you feel as well with you emotions up and down all the time, one of the meds im on is steroids and they can cause depression so i suffer really badly with mood swings, this has not been helped by the fact i lost my younger sister to cancer 10 weeks ago (she was only 39 and left behind 6 kids) trying to help my parents out with the 4 kids they have living with them, my moods change from feeling ok to being in flood of tears at nothing to almost ripping hubbys head off over silly things . The dialysis unit can be very scary i had to walk through the unit at the start of the year when i went for my biopsy, can they arrange a visit there for you to go through everything to help you get used to the unit and maybe put you at ease a little more. My hubby is trying to be helpful a friend of his has been on dialysis for a good few years i have never met this friend of his but we have just found out he is going in for a transplant next month and he asked if it was ok for us to visit once hes had his transplant which i think might help me a little. Dont know if my rambling has helped in any way but if you would like to exchange emails i would be more than happy to stay in touch somif you feel you need to have a chat im only at the end of a email.


  • than u so much for your reply, it has helped me alot and eased my worry that there are lots of people out there suffering just like me and maybe worst. i was so sorry to hear of your sisters cancer and leaving behind 6! kids, that must have been so truamatic :( having to jostled the kids around between you and your parents and your kidney complant on top of that and your husband is being igonrant just like mine was he didnt give at @@@@ he just treated me like a normal person as if i had nothing wrong with me, saying oh stop moaning there is nothing wrong with you its all in the mind!! he was quite abusive in our earlier marriage but we divorced, and i have been trying to slowly get rid off him but he just wont go, he even rammed into my house with the excuse of collecting an old cardigan i have a my place, hurled me out my wheelchair,took my laptop and phone,i am disabled perment wheelchair user and have severe osteomalacia-brittle bone disease, and he knew this after being with him for 25 years but even back then he didnt give a monkeys. He hijacked me in my home ranting and raving being constantly repetive about something i said on facebook, he would not leave, he was pushing and shoving me in my chair and being so verbal abusive and emotional hurtful because he know things about my life and he likes to bring it up even when we are not arguing he would bring things up to try and bring me down and make me feel worthless. but since the latest incident about three weeks ago now i managed to phone the police the next day as i was absolutely shaken and petrified and just collapsed into bed. i called the police, they made a report a police officer came around and took an official statemet from me and said the will go and see him and warn him to stay away from me and have no contact with me whatsover. That is all i want is to get on, by myself and do the things i missed out on when i was married to him, so many trivial things that people had we never had because he had control of the money and i dont know how he spent it we had just one meal a day it was horrendous and my kids are still traumatised today but still see their father out of respect. Im just glad to be back on my own again as i have known him since i was 18 and married him at 23 so all my life he is the only man i have ever known, so being on my own is fine for me for now, i dont want anymore hassle and anyway im a burden now that i have become disabled, and have difficulty in doing stuff now. My four children are no where to be seen hardly, and they know their mum is in a wheelchair, my 17yr old lives with me and he just sits at his computer all day grumping at me for naggin!!?? NOt even the adult social service care department have returned my calls for help within the home and the housing as i need to moved its a one bed flat on the 5th floor of a 9 floor building and since i moved it has been malfunctioning ever since it was only saturday i went out with my daughter to the poundland supermarket across the road from me, and we got stuck us and three other tenants, the lift didnt moved just stayed on the ground floor, everyone was trying to open it but it wouldn't so my daughter tried and thankfully she managed with all her might to open the lift doors!! everyone had to get out cos we said its so weak it cant take too many people and my chair was added wait so when it was just me and my daughter the lift went up!! all them resident and only about two or three people can go at at time how horrendously annoying that is!! Also getting in and out of the property building through the two heavy security door and iron gate is a nightmare with a wheelchair on your own!! you have to manually push or pull it open depending if you coming in or out and you have to push/pull as hard as you can to make enough space to get the wheelchair in without the door closing or slamming on you. I was fooled again by my council that it was disabled friendly and suitable for those with medical needs!!!what a load of poppycocks!! I even filled out a rehousing form and another a medical form and the medical form came back declining me on medical ground, 1 she is being considerd for dialysis and is not yet on dialysis, excuse me i just had a first operation of a two part operation to make a fistula and when the second operation has been done and healed as it is a larger wound and more invasive procedure it will take a little longer to heal and then i will be straight on the dialysis im at 9% if it goes lower i will have to go on emergency

    2 the lift being malfunction is not a medical issue only a maintenance issue that needs seeing to directly. Erm if the lift is broken how am i or another disabled person suppose to get to their property if they are in a wheelchair or have serious walking problems. Are these people mad, the lift has only just broke again this week, if the lift was to break while im having dialysis, that would be a nightmare situation and i explained it and told them this in the medical form i handed to my rehousing officer, but they have totally over looked all of it. The rehousing officer while explaining all my issues and situation of the property at first, and i didnt have a phototcopier to photocopy all the hopital specialist reports, saying directly that she should go on dialysis and a transplant list. All with all other discharge and phychatrix appointment from South maudsley local mental health clinic, and renal psychotherapist letter that is due on the 5th of september, discharge letters for the fistula part 1 operation and surgeons copy of letter to GP giving graphic detail of what is to become of me and what is to be taken place in a number of weeks after the first operation. A Catalogue of medical information, wheelchair specialist letters, There are so many i cant think of them all, now the rehousing officer offered to take the copies back to his office and photocopy them and he will come back in person on the friday or the monday to give them back to me, which at the time i thought was very nice of him. And he did exactly that brought them back as he said and thats when i explained my situation with my ex husband, and he said well that is another issue altogether we have to look into immediately, so im thinking great he gonna work for me to get a place

    3 this lady is known to have a history of mental health issues, anxiety, panic disorder and depression and social disorder. There is no where to say that she is receiving secondary mental health service.

    Again, i put in two letter south Maudsley local mental health clinic appointment counselling letter and a letter from a Renal Psychotherapist/Psychatarist, for an appointment on the 5th September 2016 and i gave them a list of all my ,meds i was on, one being amlytripline,-anxieties and relaxant to sleep at night, zopliclone-severe insominia due to pain in the bones at night and not able to get a comfortable position on top of that i have to literally go for a wee about every half hour-hour throughout the night and getting up all them times is very painful :( i also take clonazepam again for anxieties and muscle relaxant and help the insomonia. So how can the housing medical independ team come up with such a ridiculous notion that i am not being treated for mental health issues when i gave them proof and names of doctors treating me.

    Now my housing officer and rehousing officer have gone cold and are not answering my email now for two weeks. I am beginning to wonder right now in the past half hour as ive written this letter, Am i Sure that He put in My Documents, and not just the Form Health and Disability Assessment Form, because only someone with little evidence would only receive such a of shere blatantly ignorance and prejudice. Even the housing officer, and tennants have agreed in conversations that it is not very good for wheelchair users, but no she would put that on record though will she!! I am furious and so angry with them and my local council when registering takes 12 weeks and its been about 5 weeks now so far so im stuck in the sh't hole until i can start bidding or something comes my way, i cant go out even to get my post for fear the lift will break down while im in it, or when i go back to go in it and it wont be working and then i will be stuck in the lobby, that happened to me a few weeks ago after attending a hospital appointment, i came back as usual with lots going on after seeing the renal time and the things they had been saying and advising me etc, when we got to the lobby me and my son, the lift was broke again, i was so enraged and saw red that i just rammed the lift, i know it was wrong but i was just so sick of the lift after dealing with it since we first moved in a year ago and its a brand new building build a year ago, i was one of the first tenants to take the tenancy, and being a new build on the 5th floor, but only one lift, that was worrying me in the beginning when i viewed the place, but i didnt think it would be as bad as that. And the security doors, what a nightmare to tackle with two!! really tall heavy doors, its horrendous and painful trying to tackle the doors and the wheelhairs at the same time and when you come out the building the pavement has been build on a slope somehow, so as soon as you come out from the iron gate without being alert, your wheels are automatically going down the slope towards the very busy road, i put all this down in the form, but they have completely over looked everything i have said and produced and i am so furious.

    im so sorry for whingeing away like this, with my own ranting, but it is so hard and no one seems to understand what im going through, i just feel like going to bed and not waking up again sometimes, because i have no real help, my son cant be bothered, my other two daughters are too involved in their own lives and my eldest son is too involved with his new wife. So even though i like living on my own, i dont mean completely isolated from everything, i am trying to make a social life by going to college in september to do a creative writing course a years course and hopefully go further and a short art course- Colour Therapy, I hope both of them are productive and give me something to motivate myself more and feel better in myself and make some new friends of my own, and not be reprimanded by my ex husband what you getting mixed up with her for etc etc, he was jealous, possessive and obsessive, controlling and manipulating and i put im with it for 25 years, but after the last incident, something just snapped and i said right thats it the kids have all got their own lives i dont need you anymore to help with the kids, even thoug he didnt do anything, he never played with them or spoke with them the only communication we got out of him was religious lectures everyday and constant disciplines, physical and verbal and emotional, so i am glad to away from him, even if he is sorry for what he did and he has changed, i have changed, and i dont see him at all in that way romantically and too much bad memories it would take a decade for it to go, maybe more. so i dont ever want to see him again and mess my head up again.

    i hope all goes well for you in your kidney complaint and if you need to talk or offload or rant a bit you can always come to me. i am so sorry for your sister and the poor wee kids 6 of them! Oh gosh what a trauma for years to come. you take care now of yourself, and slowly but surely get to your husband, or punish him if you can, to make him see what you are trying to get across to him. like if he is ill or ask you for some tablets something like that dont do it. Just walk away and carry on with your other task saying there in the cupboard, where they usually are, you know where they are and what to do. lol thats if you can i dont know your situation. Either way, men are all the same they expect us woment to keep the house clean, its in our system and maternal instints to be nesting and the men take advantage of it and just sit back and leave us to it completely with no help at all!!! take care love all the best, if you need a chat just look me up and i will be there, take care xx

  • my husband does have his moments where he a complete idiot but then he does also have moments where he is a star, hes been so helpful with everything going on with my sister, i think he can dismiss my illness because a very good friend of his has been on dialysis for years and is about to have a transplant, and a ex of his her dad was on dialysis but also had a transplant, i dont think he was around much with these people at the start of their illness so possibly does not understand how ill people can feel before they start dialysis or have a transplant. I completely understand what you went through with a abusive partner as in my younger days the father to my youngest daughter was abusive even to the point of hitting me in the face with his walking stick when i was 6 months pregnant but we split 15 years ago now and he has nothing to do with me or his daughter. As for your housing have you tried speaking to your local MP? you can easily find out their e-mail address any e-mail you send in the future to your housing cc your local Mp in, explain that you are getting no contact back from them its amazing how when you start to cc in local MP's into these sort of emails that you start to get a response, we had problems a few years ago with bailiffs and council tax (it was being payed direct to the council but they were still turning up on out door and even tried to take my neighbors car because it was parked outside our old flat) the local MP asked to be updated on our case and actually spoke to the bailiff company about the charges they were trying to add for visits they did not make. and we got it all sorted with his help in the end i think if we had not got him involved we would of still been fighting with them, i dont know if you can add emails on here but i see you said you were on facebook if you want to add Denise todd my profile pic is one of my dogs please feel free to add me xxx

  • Hi Sakinah With all your other problems , don't be afraid of Dialysis , Usually the Dialysis Kidney team are the best and the most dedicated . This is what we find for my husband who has been on Dialysis for over a year now .. and my friends I know from other areas; they say the same .. Dialysis is the least of my husbands problems ,as while he had his emergency line waiting for his fistula to be ready for use , he got an infection which went straight into his blood stream into his spine .. he was getting on fine with dialysis, once we got into the routine , we even had a lovely big party for our 50 years together , over 100 guests . in Girton College Cambridge , and staying over night .. the 5 days later he couldn't get off the bed , he had the infection Spondylodiscitis ... and he has been in pain ever since ..

    The renal team do everything you could wish for , but I am not at all happy with his treatment with the spinal surgeon and we are getting a second opinion ....

    So don't be afraid of Dialysis and I hope you get the angels the same as the ones my husband has !


  • thanks for your reply sylla, i really do appreciate it,it gives me encouragement knowing others are suffering just like me. xx

  • Hi,

    I felt like you when I was told I needed dialysis, it seems scary. But after 6 years on PD i had to switch to HD because of constant peritonitis. I was worried about that but they are very good in the dialysis unit and I feel the chance of infection is low because they are scrupulous on hygiene. Does it hurt? Does a blood test hurt? However you can get EMLA cream from your doctor you put on about an hour before you go to the clinic.

    My initial fears have all gone and now having accepted that the treatment is necessary to keep me alive I actually enjoy the visit as I chat to others being treated, the nurses and watch films on my notebook. Most units have free WIFI.

    At my unit there are 3 shifts Monday to Saturday and in my case it takes 4 hours but a few are on 3 hours and a couple only go twice a week but the norm is three times a week. Once you have settled to a regular pattern you will find that most of the same people are always there with you and a little community forms in the unit.

    I am picked up by a Taxi about 12:15 pm for a short journey to the unit and usually I am straight on at 12:45 and completely off and ready to go home by 5PM and normally the Taxi has me home by 5:30PM.

    Many, but not all. people tend to feel tired on the evening of the session but usually are back to normal next day.

    I hope this has helped.

  • thank you for your reply, i am sorry for your loss ofyour sister and the horrible situation of who is going to watch over the six kids and your kidney situation to!! And your husband being a typical chauvanist, oh stop moaning theres nothing wrong with you its all in the mind, thats what i got and he would do nothing in the house not a thing, when it came to working and money was involved he was straight out the door. im divorced now thankfully as he was abusive and horrible. im living with my sloppy hormonal 17 year old teenage now. so just biding time with my housing issue and my health. i hope you get well and your result get better and the ease of stress from your situation is released from you soon.. take care xx

  • thank you fredinspain, you have given me assurance and encouragement in your reply,as you sound positive about the dialysis and you have been doing it for quite some time now i believe, well thats good, i hope you didnt have too many complications along the way. take care :)

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