I had my 6 monthly checkup today in clinic and my creatine was192, potassium 6.6 (this is very unusually for me as usually 3.5 and need to take Kay-cee-l syrup) sodium 142. I been told by the consultant to start thinking about dialysis.
I was very shocked as I thought my creatine was at a good level and was expecting just to continue with my melds and see him again in 6 months. I have been extremely tired recently, suffering from loss of appetite, headaches and also been throwing up disgusting yellow stuff every 10 to 15 days sometimes lasting all day that makes me feel terrible.
Can any one help as its all a little confusing, as my eggar is 24 from what I can work out.
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Charlene_Coxhead
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your Creatinine is not too bad, and your sodium is fine. Your potassium is too high, I'm sure you renal team will have a plan to get this down.
You symptoms, loss of appetite, headaches, vomiting and feeling tired are all symptoms of kidney failure. these will not improve until you start on dialysis. Now, that is something you should be aware of?
Don't panic
Dialysis is not the end of the world. It will change your life, which is a good thing to start to feel well again. There will be a new routine and some dietary and fluid restrictions.
ME
My kidneys failed January 1990, dialysis (CAPD) October 90 kidney transplant, April 2007 transplant failed, 2007 back to CAPD, then APD, 2011 HD to now.
I have had dialysis for the last nine years and it allows me to still work, I chose to drop to Part time, because I could, and it suits my dialysis pattern.
You will find all the staff and most of the patients friendly and will happily help, ask them questions, and very important discuss you worries and fears, they will have had the same.
Thank you for getting back to me, i guess its the fear of the unknown. My parents want to be tested to see if they can be a donor but i hate the thought of making them go through such a big op and making them ill for my gain.
I understand it's going to be love changing, and need to get my head around this. Not even sure if i can chose which dialysis i have or if the clinic decide this.
I already on a very restricted diet has have allergies to glutwn, wheat, dairy and eggs so hope it doesnt get any more restricted.
I hope you get another donor soon and thank you for replying it helps to speak to soneone that has gone through it
Feel free to chat whenever you want. It is a big step going onto dialysis, but, it is going to make you feel better. It is not instant, but, you will find one day, I actually feel hungry, or my sick feeling has gone, and no headache.
You have the choice which modality to pick and will be given all the help you require. I have done all of them and each has its benefits and draw backs.
You might find for a short period of time that they use haemodialysis, this is the quickest way to get your figures back to a healthy level, I was going to write normal, but, what is normal for a renal patient is different to Joe public. To do this they will fit a temporary connection, that will be removed when no longer required.
Living Donors?
I am like you and would not risk the health of anyone dear to me, yet I understand why they offer, I would if the situation was reversed.
The main points to remember, You are NOT on your own, you WILL get better and don't bottle up worries, talk about them.
Thank you again the information you have given me, this has given me a much better understanding.
The shock of being told i need dialysis has eased now and as you have said it won't be easy but to feel better has to be a positive. I am a positive person don't get me wrong i have down days but this thing isnt going to beat me.
I have sort of come to accept life will change but I'm not going to let it take over my life. It's going to be another way of taking medication to allow me to be the old me, if that makes sense
I do home heamo, which resulted in better health, but does put more pressure on my family and restricts some movement (such as short notice travel) etc.
Thank you for responding. I am seeing tge dialysis nurse next Tuesday. Unfortunately i am very thin so may not have the option of the type of dialysis. I think home haemo would suit me best.Did you get the machine provided?
Yes, you'll be trained in the unit before you can go home, so you and the staff know your confident.
The hospital will arrange a time/date to come and put in the plumbing, deliver the machine and first dates of stock.
ideally you need someone about in the house while your on dialysis.
The hospital will come and install the machine, and deliveries will be once a month. Usually a nurse will come out for the first session at home, and technicians will come out and service the machine and change filters occasionally (depending on what sort of machine)
Blood tests will be done once a month (my hospital sends the nurse out to me, so we can have a chat and go over any problems) I can check my results on a website called
Some hospitals require you to go to the unit or GP for a monthly blood test. Both the home heamo team, techs and other staff you need to deal with are a phone call away.
Also you should get some reimbursement from the hospital towards utility bills (again depends on the machine) and a reduction in council tax if you use 1 room for dialysis only.
Its better than going to the unit 3 times a week, but I do find it isolating at times.. Its important to try and keep hobbies and social interests up. I joined a TaiChi class, and try to get out of the house everyday, plus going to the odd social meal now and then with some local groups.
I am not a doctor but l can only give you advise as a fellow patient. Yes being on dialysis is not nice but trust me you will feel much better after your dialysis sessions especially a day or two. As long as you eat the right food and drink within your limits, there will be good and bad days during dialysis which is normal. However, without dialysis its bad all the time. Look on the positive side, you will be health again.
Thank you for replying, its good to hear from others that have been through the same and giving me the truth about dialysis it helps to get a better understanding.
I am concerned about the financial implications as live on my own with mortgage and bills. Are you working or do you have help. Sorry for asking such a private question
Like you when l started having renal problems l was working, l had a very good job as an assistant manager but l was getting too tired and very sick all the time so l had to leave the job. I never recovered before dialysis. I was missing job interview, l was always sick. Things only changed when l started dialysis. I work everyday including the days that l dialyse and l am doing dialysis in the evenings after work. I never applied for any assistance financially because l have always wanted to be my own man. maybe too proud as well. It will be difficult to work for you especially the first month but you will get used and work as normal, as long as you don't do too my physical work. I am on dialysis right now which means l will finish at 23.00hrs. In 30minutes time l will be home and at 06.00am l will be at work. The first hours of the shift will be hard after three hours my body will be used.
I didn't have mortgage like you but l was paying for my university personally without a bank loan. I also had a car, rent to pay, food and all the other expenses you can think of l had them. I used all my savings but l am now getting back to my feet.
You will be fine trust me. Feel free to ask me as many questions as you want. Patients are the best to answer your questions because we feel and are going through it write now. If ever you want to talk l can forward you my number.
Thank you for the information i too have a job a really enjoy and i am good at it but finding it harder these days and don't get paid any sick pay if I'm off. I am the same i don't want to ask for help and have been using my savings. I hope that when i start dialysis and get into a routine i will be well enough to work. Im hoping that i could work from home/hospital the days i have dialysis as it takes an hour to get to work.
If you choose Peritoneal Dialysis you will probably be on a less restricted diet and you may be able to do it on a machine overnight so that you can work during the day. Your figures aren't too bad, apart from the potassium which you can control with diet. The consultant may have been encouraging you to start thinking about dialysis rather than suggesting you needed it immediately. Donating a kidney is pretty safe, and donors normally go on to live a perfectly normal and healthy life afterwards. I know it's hard, but please consider accepting a kidney from your parents. I would donate a kidney willingly to a close family member or friend . I recently retired from being a renal counsellor and my husband is a renal patient who has had a stable transplant for 23 years. Before that he was on emergency Haemodialysis and then PD but he carried on working. With those figures I doubt whether your unit will start you on dialysis soon, but they will want to treat the symptoms and start you off with education about the different dialysis modalities. In our unit people didn't normally start dialysis until their estimated kidney function was under 10, but doctors will look at the rate of decline not just the current function. If yours has gone down a lot in the last 6 months they will want to start preparing you. Unfortunately you have described the typical renal symptoms, and these won't go away until you start dialysis. My husband had the same symptoms for a year or more, but they disappeared as soon as he started PD. However, a change in your diet can really help so do talk to a renal dietician at your unit if you can.
Thank you for responding, it was a shock last week but over that i think and just trying to get my head around all the different dialysis option's. I see my consultant in 3 weeks time and putting together a list of questions. Its good to hear from someone with first hand experience from having a husband with reneal disease and working as a counsellor.
I understand what a shock it is Charlene. Make sure you see your own consultant next time and not a registrar, and having a list of questions is a really good idea. Good luck.
I am currently in hospital ans have been in for the last 10days due to 20lb weight again due to water rentention in my legs. I have had a chest xray that shows fluid there too which is why i am finding breathing hard. I had an heart scan friday which shows two of my vlaves have calcified and i have distolic dysfunction
Oh, so sorry to hear that Charlene, you poor thing. I hope they are looking after you well. Are they going to dialyse you to get some of the fluid off, or have they put you on a strict fluid restriction?
Hello Charlene, sorry you are going through this. I can imagine how worrying it is and I was very pleased to see the encouraging responses you have from the forum members. They are a great bunch and this is a really good place to share things so please keep in touch. Although not yet on dialysis at my last blood test in April I was around 18% kidney function with creatinine of about 300. Over the last month or so I have begun to feel really unwell and in fact am off work today and was yesterday as I did not feel up to going in. I suspect my kidney function has decreased (next blood test is on 17th June). Like you I have a mortgage and bills to pay and whilst work have been very good I know they won’t pay for me to be off sick indefinitely so it was good to hear from people on this forum that have had kidney failure and now through dialysis feel so much better and in many case have been able to resume work. Do stay in touch Charlene and let us know how you are doing. And of course reach out to everyone for help. As I said they are a great bunch on here.
Thank you for your post. It sounds like you are going through a hard time too. Its hardgoing to sleep one day feeling ok and then in the night waking feeling sick or getting up in the morning and you feel like a different person and suffering. I try to remain positive. UnUnfortunately since i posted this o am suffering badly with a stone of fluid rentention in my legs and stomach which is very uncomfortable.
I hope you improve soon and that your blood tests are ok later this month.
Please keep in touch as it would be good to hear how you are doing, and sharing information can only be a good thing.
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