18% ckd with advanced symptoms
Posted , 5 users are following.
Hi I'm 39 and been diagnosed with ckd for 2 years I'm diabetic and suffer high blood pressure which is the cause of my ckd which is at 18% at the moment but this fluctuates up and down monthly also have high potassium problems which I'm worried about .. the problem I have is I have all the symptoms of stage 5 end stage ckd ... feeling sick every day very severe tiredness and exhaustion I can't walk to top of stairs without having to lie on the bed no appetite which is a problem with my diabetes ..also severe pain in top of arm muscles and weakness in them ...ankles and legs swollen and restless legs too I feel very unwell most days I've spoken to other people who are more advanced than me below 10% and they don't seem to have these symptoms are my symptoms coming early because of the diabetes or is this an unusual accurance thanks
Darren
0 likes, 15 replies
richard87134 dazzywood
Posted
Hi Darren, i think everyone is different and you can't compare yourself with others, i'm Stage 3 and have symptoms already which strictly speaking i shouldn't have but they are there, i feel sick most days and have little appetite coupled with general fatigue but there is no treatment until GFR gets very low, the nephrologist says it's a monitoring stage at the moment which seems a little frustrating but until the kidneys start to fail completely they will not do anything. Obviously treating high BP and anaemia is the norm but will have to play a waiting game i think which is very frustrating
helen54849 richard87134
Posted
Hi,
I am sorry you have symptoms nows I feel for you as I know how bad it is. It is frustrating. They told me I wouldn't need dialysis as I had a live doner and left me to get to the point where I had to have dialysis. I was 7% they sent me in rather a hurry to have my pD libe fitted, I sat in the hospital all day to be told they were not going to do it, I asked when they were as I was dying and they said they didn't know so I said I am very sorry I am not leaving until you do it. The nurse stood there for a minute and then went away she came back and said they had to pretend I had come in an ambulance and they would do it but not everyone is as hard faced as me (I have to be). Good luck and I hope you start to feel a little better soon.
richard87134 helen54849
Posted
Hi Helen, cheers and thank you. I'm not sure why it is effecting me full on as i'm only stage 3 but i definitely have symptoms that are pretty unpleasant, apparently you can get them around stages 3/4. Can't play the victim though as live does go on as they say, many thanks for your kind words.
dazzywood richard87134
Posted
Hi yes it is very frustrating the feeling unwell and extreme tiredness like with you I was told I have to wait until the k8dneys start to fail I do understand this but I'm being put on transplant list once my tissue typing bloods are done so at least there is a light at the end of the tunnel
helen54849 dazzywood
Posted
Hi,
Every one is different so as others have said you can't compare yourself, also you are diabetic so you have two illnesses to contend with. I didn't get symptoms until about 12% but they were the same as yours and I didn't have diabeties to contend with. There is no set time to start dialysis but they usually start talking to you about it around 15%. Unfortuately you are in what I called the limbo stage and it is not very nice, its the part where you are not quite ready for dialysis but your symptoms are nasty none the less. I would speak to your neph as my concern with you would be if you are not able to eat (I know what this feels like it makes you feel sick even looking at food right) you can't take your meds and therefore you are at risk of a diabetic coma. Tell them your symtoms and see what they say. Have you looked into the different types of dialysis yet if not I would do so, so you are ready. Even if you know you are going to have dialysis it is still a shock when the time comes so to feel shock is normal. I did peritoneal dialysis at home each night as I don't like people faffing with me and it enabled me to still go to work and look after my kids we are the same age as each other so its depends on if you want more freedom to get on with life. There is also haemo which to start with you have to go to hospital 3 times a week for about 4 hours there are food and fluid restrictions with this and you can do it at home after a while. Surgey is required for both a fistula for haemo and a tenkoff catheter for PD. They can put a line in your neck if you need dialysis urgently so don't worry. Once you start dialysis you will feel better not 100% but better than you feel now I felt better after about 4 weeks. If you want me to explain my experience with PD let me know I can't go into detail about haemo as I haven't done that. I visited the haemo unit and spoke to the people who have it looked on youtube and decided it wasn't for me. We are all different. You will no doubt have a double transplant when the time comes and shortly go on the list. You are lucky (it may not feel like it right now) as people with your issues are treated differently on the transplant list, you have priority. My friend had a double transplant he went on the list in November 2015 he had his first call after 2 weeks, it didn't work out and you need to expect that then two weeks later he got his second call and the transplant went ahead. He is doing fab and no more injections. Let me know if you need anything, I am not a doctor but I have been through the process. Take care x
dazzywood helen54849
Posted
Thank you so much Helen your words are a great help I've had the kidney nurse come to the house to discuss dyalasis
s with me I've also opted to go down the peritoneal option as I'm very queezy about the fitsula in my arm so I think they my be prepping me soon for dyalasis I recently tho was called in too talk with the surgeon that's going g too do my transplant which he explained too me that if I wanted a kidney transplant first and pancreas later date then there would be a considerable wait but if I opted for the double transplant as you said the operation will be done within a year and sometimes within weeks of being on the list I've opted for the double transplant as I've had trouble with my diabetes and after the kidney transplant I would struggle with healing process if I was still diabetic I'm at this moment being tested for tissue type so should be on list in a few months so may have the possibility to avoid dyalasis thank you for your kind words
helen54849 dazzywood
Posted
Hi,
Excellent, you will be better having the double as if you wait the diabeties could damage your new kidney and once it is done it is over with. When you have the PD catheter fitted there are two ways they do it depending on where you live in the UK. There is the straight one that is done under local anesthetic which can come out easier if you stand on it (i stood on mine once but I never did it again lol) or the one I had was done under general and its curly so less likely to come out. The op isn't bad I found the worst part was the gas they pump you up with (they do it key hole) it stays in your system and has to come out I found this the worst bit the day after the op and you wont relate to this but I would rather give birth it wasn't nice once that is gone its fine. You may walk bent over for a couple of days but it goes quickly. When you start PD you will feel better after a couple of weeks. I was lucky and didn't have any restrictions and my potassium went from 7 to 4 which meant no diet restrictions and I only had to have phosphate binders a week before my transplant and I didn't have any infections as I have OCD. If you do have to have dialysis make sure you do exactly what they say and wash your hands like your life depends on it and you will be fine. As I have a full house I got a free shed to keep my baxter delivery in (you have kidney failure, here have a garden shed, every cloud and all that) you get a delivery every month and you get about £11 a month from the hospital towards electric, it doesn't use much like leaving a light on all night. You can also claim a reduction on your council tax as your are doing treatment in your bedroom they come and check and then knock a bit off. You can claim pip message me if you need any advise about this as you need to fill in the form in a certain way. It makes a noise the machine like an air bed pump, put the machiine on some towels it helps and you will get used to it honest. Hopefully you wont have to do this but any tips are useful. Your transplant will be slightly different from mine as I only had one body part but you will have a line in your neck, a catheter, and drains in the wounds (all this is done while you are a sleep) I wish someone would of told me what it was like but I guess they don't know. The day after the op your are still off it on anesthetic etc and you will have morphine you do yourself. It is the second day I found the pain kicked in and mine didn;t really get a bitter until day 10 we are all different. You will get made to get out of bed the day after your op and sit in a chair for a bit, this is to stop the risk on chest infection. You will be told to cough by the physio this is nasty at first but you have to try and sneezing is a nightmare. I am ok with anestitic usually but due to the length of time I was down I think about 4 hours I felt sick when they woke me up but I told them and they had the anti sickness ready and they gave it and the feeling passed straight away. You will be fine x
jacqueline40246 helen54849
Posted
Thanks Jacki x
dazzywood helen54849
Posted
Thank you Helen again you have helped no end with the information you've gave they have told me ill have catheter fitted under general anaesthetic so this works well for me ... also I was on pip for 6 months and I decided to apply for the higher rate as I was finding walking any distance a struggle and the sickness and feeling unwell was getting worse they wrote back to me and took everything off me lol I appealed and they refused again so at the moment I'm in the process of a tribrunal to try and prove I'm not telling lies they have treated me Bradley through all this which I could do without but I suppose it what I have too do thanks for all the help
dazzywood jacqueline40246
Posted
Hi Jacqueline pip is a benifit for people with illness/ disabilities it's a bit complex to apply for but comes as a great help towards your needs
helen54849 jacqueline40246
Posted
Hi,
Yes of course, its personal indipendance payments it replaced the old DLA disability living allowance. There are two rates standard and enhanced and mobility and care. If you are succesful in getting standard rate mobility and care you can apply for a blue badge, this is very useful if you can't walk very far due to fatigue and breathlessness. You do get scowels off the more overweight people as they seem to think as they can't see what is wrong with you they have more right to the diabled spaces. You have to give the council the reg pplate of any cars you will use the badge in and so I advise such people to feel free to contact the council and if I am tired I usually tell them they are either ignorant or have xray vission and as I doubt they have xray vission they must be ignorant. Sometimes things have to be said and I am not backward in coming forward.
helen54849 dazzywood
Posted
Hya,
That is why I didn't apply for a change when I had my transplant as I know how they roll. Good luck with things like you say its all you need tribuneral but at least you will get to put your point across and the judge will be able to see you. Keep us posted I am back to the hospital again tomorrow (I had my transplant three weeks ago on Thursday and I have only been out of hosp 4 days and back and too the rest) they don't tell you about that bit though. I have to have three days of IV steriods as they think I may have acute rejection which is very common the steriods are to reverse it I went on Saturday for them but they said I didn't need them I am having a mare at the moment but I am sure it will settle down. I will keep
I have to as I am not really a cryer lol. x
dazzywood helen54849
Posted
Hope everything go well for you its what we have to go through I'll keep my fingers crossed for you let us know how you get on good luck
helen54849 dazzywood
Posted
Hi,
Just back from hospital and although they tell you a kidney is likely to reject they don't tell you what they do to stop it! I have advised them to be a bit more honest about this as it is important for people to know. So in I go after having my scan which didn't show anything really, my creatinine was still on the climb if it goes over 150 (mine was 164) they do a biopsy to see what is going on and also an MRI the scans are ok the biopsy is nothing like having it on your own kidneys in the back its not bad just uncomfortable plus I think they were a bit mean with the anesthetic but ok none the less. So they were not sure if I had started with rejection or not if it was it was a low garde easy treatable type which I was glad for. The treatment 3 days of strong IV steriods side effects not too bad headache, achining joints and sickness. Painkillers for the headaches and other pain and anti sickness meds sorted that out so got away quite good this time. I questioned the dose of prograf (one of the anti rejection drugs) and they reduced it my creatinine dropped before i started the steriods which would suggest as I though it may of contributed. My creatinine was 130 before my last steriods so going in the right direction. Back on Monday to see how I am getting on. I wish I has been made aware that the aftermath is a roller coaster as I can deal with anything then. I don't want to scare anyone but I was under the impression I would be great and it really isn't like that straight after. It is a whirlwind of appointments and this has gone up and this has gone down and this isnt right. My next task is my PD pipe removed and the stent that will be in the next week or two then I hope to have a break and be on the mend. I can't wait to be fixed. I think my issue is i expect too much of myself too soon, I am like a little whirl wind and think I need to let up a bit lol. Will keep you updated, like I said nothing I say is meant to scare anyone and we are all different and will have different experiences on this journey but if mine can help then all the better x
dazzywood helen54849
Posted
Thanks for all the information it's a great help to know possible problems side affects as you said I haven't been told hardly any about this just about what happens when a match is found ... hope things work well for you sounds like uve had things pretty tough keep us updated on your recovery hope it go's smoothly for you from now on