Hello everyone, I have known abut my ckd for over 7 years, ive been in stage 5 for a year, I have had the flu twice this year already and really feeling poorly, i feel so unwell, cant breath very well, spacey, more tired than normal and concentration is more difficult. I am terrified I wont know when my kidneys are actually crashing.. a month ago my kidneys were 10%
Is there any way ill know?
Janine, if your kidneys failed totally, you would become severely ill immediately, feverish and sick. With just 10 per cent function and feeling so ill and “unable to breathe very well” and on your second bout of flu, if it were me I would be getting myself to A&E asap, if only to avoid coming down with pneumonia let alone kidney failure. I think you need to be expertly managed, and kept hydrated at the very least on a drip in hospital. I do so hope that you can do everything to keep stable at the very low function remaining - flu and the like are the last thing those with very reduced kidney function need. Lots of good luck wishes and do let us know how you get on.
Hi Janine,
When making the decision when to start dialysis, it's a combination of 1) remaining kidney function (yours is at 10%) and 2) how well / poorly you're feeling. For me, my kidney function was down to 6% when I started on dialysis and the symptom that decided it for me was that I started getting a 'cold burning' feeling in my feet and legs. I also started getting more nausea attacks. Truth be told, I probably should have started on dialysis a year prior because there was no benefit to waiting until I was really feeling sick. You are at 10% and I would recommend you start on dialysis now. The sooner you start, the sooner you'll begin feeling better.
I hope that helps.
I wish it was up to me! my neph said he didnt want me to start yet, my next appointment it April and hes going to decide then, I wish I was on dialysis now I cant take anymore
Hi Janine
Sorry to hear of your illness firstly. Mrs O is right you need to get expert help and try stay hydrated. I started dialysis at 9% egfr and that got to as low as 4%. Your nephrologist should have started to prepare you for dialysis and at the very best should have presented you with options on dialysis. If you're having haemo (which I had) you will need to have a fistula created and if your doc hasn't discussed with you then he should be discussing this now.
I hope you try to stay hydrated and wish you well on your journey through dialysis. As I've said before in many posts, I've been through the whole journey and had a transplant recently but to this day it remains a subject close to my heart. Give me a shout if I can help with anything else and all the best
Stephen
I always feel like im over reacting if I go in to hospital, Ive been at 10% for almost 11 months now and if ive gone in to have my bloods done and im still the same even though ive felt more poorly than normal I feel like im wasting everyones time, my BP was 150/110 2 days ago so I rang hospital and nurse told me to go to bed and see how i felt in the morning.... I never know when to go in
Janine, see my earlier reply. It’s your body and you know how you feel. Get yourself to A&E (ER if in States). By the sound of things, it seems as though you could do with a more caring nephrologist!
A lot of people have said that to me Stephen, I have my next appointment in April when my neph will decide, I have decided on PD, I have been like this for 11 months now and had enough, feeling very breathless though, was going to have my bloods done tuesday
I appreciate the replies everyone, I never know when to go to hospital, I dont know whether I feel more poorly because of my flu or if things are worst, its the not knowing it drives me nuts just feel so ill
Yeh remember the symptoms very well. I chose haemo because I also have Chrons disease so a no go for me. It's just as effective and PD or haemo you'll find before you know it you'll have a bit of oomf back! I started cycling swimming and light running after 3 months of dialysis. And btw I'd present myself at a&E also and describe your symptoms. Best of luck again
You are definitely not over-reacting from what you have told us. On the contrary, you are in need of expert and immediate care. That’s what the experts are paid to do.....by us, the patients. Do not put yourself at risk of getting even more sick - get help while you can.
Janinec87,
My creatinine suddenly plummeted to 4.6 in January of 2017 with an eGFR of 8-9. I felt very poorly at that point. I really expected my nephrologist would say it was time for dialysis in my January 2017 appointment, but he didn't.
I still remember the difficulty I had focusing during that appointment and how poorly I felt. He was convinced I had low sodium and that had caused the sudden plummet in my creatinine. He took me off the diuretic he had had me taking. He also had me eat 3500 mg of sodium daily. (I couldn't believe the sodium he wanted me to eat--my food tasted way too salty. But I did what he said.)
He was clearly expecting my creatinine to rebound back to 2.0 but it didn't. It did improve to 3.8 moving my eGFR to 12. I was definitely feeling better. However, my nephrologist said he thought a creatinine of 3.8 was my new baseline.
I decided it was time to request a referral out for a consult. (My nephrologist had been very perplexed by my case since taking it on in March of 2013. I wanted some answers, even if it was bad news.)
I was referred out to a university nephrologist. Four months later, August 16, 2017, I saw the university nephrologist. My blood pressure had been running very low consistently until I had started eating 3500 mg I'df sodium. It had elevated with the extra sodium so my regular nephrologist had put me on a blood pressure medication. When I saw the university nephrologist my blood pressure would suddenly plummet (dropping 25-35 points) when I would stand up. It did that in the university nephrologist's office. He and his nurse were clearly very concerned. He pulled me off the blood pressure medication and told me my renal function would improve when my blood pressure elevated.
My blood pressure elevated over the next week. It stayed in very good range for several months. I couldn't believe how much better I felt. My Nov and Dec 2017 renal panels showed a very modest improvement with my creatinine coming in at 3.2 and 3.19, respectively. That gave me an eGFR of 15, the bottom of Stage IV.
I also had two kidney infections during that time and a bad sinus/chest cold. I finally got past everything right after the new year. I was definitely feeling much better. I had been able to exercise code daily since late August of 2017 so I was regaining my strength.
My January renal panel came in with creatinine of 2.7 and eGFR of 18. This was nearly a 2.0 improvement in creatinine since my renal function plummeted the year before. I had expected a positive appointment with my nephrologist. Instead he said there had been no improvement, etc. Of course, this renal panel improvement seems pretty clearly to be due to the treatment change made by the university nephrologist rather than my regular nephrologist. So that may be the problem.
Regardless, my blood pressure is now quite variable and is sometimes quite elevated. I don't want my regular nephrologist to try to address that because he was not able to do so effectively for four years.
So, I am going back to the university nephrologist this week on Wednesday, Feb 7, 2018. I am hoping he will take my case full time. I am also hoping to hear that he does consider this to be an actual improvement in my renal function. And finally, I'm hoping he will prove to be a nephrologist I can trust to help me know when it is time for dialysis. In short, I would like to shift to him for all my renal care.
I really just need information that is definitive and makes sense with regard to my kidneys, even if it is bad news.
I know, a long saga from me on this post. But your situation seems to be at least a little like mine so I thought I'd share a little more.
Marj
I agree with Mrs O!!!
My lengthy post was all about me taking charge and advocating for myself. (I live alone and have no family left so I have to advocate for myself.)
Medical professionals are human. They make mistakes in judgement. So we need to be insistent with regard to our care.
Let us know how you're going.
Marj
and you was right to do so Marj, I agree also I need to get a bit more pushy also, I have been like this almost a year, not working, no income, I need my life back! I dont care if im not in single figures yet I need life back! I need to get bk to work
I'm trying to switch nephrologists right now for slightly different reasons than you seem to be experiencing with your nephrologist. But if you have the option to see a different nephrologist it might be worth trying. It sounds like your nephrologist is somewhat less than diligent.
They are being paid for their medical services by us, their patients, and our insurance companies. When our renal function reaches the stage where yours is (and mine has been for a full year) we need very good care.
Marj
I will try PD dialysis when it is time too--I'm so thankful there is a form of dialysis I can perform independently at home. I will be able to more easily fit it into my life than in-center hemodialysis. (I can't do in home HD dialysis because I live alone and have no care provider.)
Anyway, if you start PD dialysis within the next few months I would appreciate how the transition to PD dialysis goes for you and so forth.
Best wishes!
Marj
I'm not wishing to rock the boat for ANYONE and PD is a fantastic option and no fault to be found with it at all. I enjoyed a camaraderie and have formed very close friendships with people in my haemo ward when I attended. The social life is nothing short of fantastic also. Only my experience of having Haemo in Scotland and id advocate for it anytime. Just saying....😂. Wishing Janine and all others best of health
Stephen
Stephen,
I am pleased to hear that you had a good experience with in-center HD dialysis. I agree that the support across patients and staff would be a real advantage for this treatment option.
Unfortunately, in my region of the United States it is only available during my working hours and so would very likely make it impossible for me to continue working. That's a major issue for me. But I may find that PD dialysis will not work for me. If that's the case I will find myself receiving in-center HD dialysis.
How long were you on HD before you received your transplant? How did your cardiac health fair while you were on HD dialysis? It sounds like you felt quite well while receiving HD dialysis. Was that true for most receiving HD dialysis in the clinic you attended?
In the United States there is clearly a concerted effort to encourage end stage renal patients to use PD dialysis. This is likely being driven at least in part based on money. However, as I've researched both PD and HD I find that I'm genuinely more interested in PD then HD. However, I'd really like to hear more about HD from those who have exoerienc d it.
Marj
You can't breathe because you are retaining alot of fluid in your body. And it is a reason why you feel unwell.
That is what I experience whenever I drink any liquid more than 4 cups of liquid per day (US standards ), but I am also on dialysis. Water, fruit, ice cream, tea, carbonated drinks, fruit drinks are considered liquids. Do not drink any. sports drinks unless you want to make your condition worse.
Has your doctor given you lasix, which will remove some liquid out of your body but you will also urinate alot.
I am not a doctor.
I was diagnosed with 2 genetic kidney disorders, minimal change disorder and FSGS, focal segmental glomerosclerosis.
Has your doctor determined the cause if your kidney malfunction.
After dialysis, I can breathe better.
Most people try to avoid going through dialysis, it is personal choice.
Even though I am
One reason. why you feel unwell and cannot breathe is that your body may be retaining alot of liquid. Liquids, include fruit, fruit drinks, water, melons, ice cream, gelatin, and water.
Avoid all sports drinks, they contain too many harmful ingredients for stage 1 to 5.
If I drink milk or water over 4 cups, (US standards ) I sometimes cannot breathe properly. So after my dialysis treatment, my breathing is better.
Lasix can help remove water from your body, but it increases urine output. My doctors took me off of lasix once I started on dialysis.
I am not a doctor.
Dialysis is a personal choice.
The are different types of dialysis
I chose to go to a dialysis center, haemodialysis or hemodialysis, the spelling is different in the UK and the US.
Although I cannot get a kidney transplant because I have a circulation problem, dialysis has saved my life. In 1989, I was diagnosed with 2 genetic kidney disorders. (Minimal change disorder and focal segmental glomerosclerosis ).
I hope you will ask a nephrologist(kidney doctor)
for help, to reduce your symptoms
Good Luck
John