Have I done the right thing and is ignorance bliss with this vile illness.
I have gfr of 21 but everything else seems to be ok.
The private consultant was very good and explained everything well.
He did say though that if your gfr goes below 20 you could be talking about dialysis so now I am terrified. He recommends 3 monthly blood tests but its bad enough trying to get a six monthly out of my gp practice. I am really walking a tightrope now.
Also as from January 2023 I have to go for twice weekly counselling sessions - if I have to have dialysis how am I going to fit that all in. No doubt I shall be really tired and sick after them so I just do not know what to do now.
I really feel now that I can't go on with this - it has taken over my life and I feel that there is nothing left now.
How low did other people go with their gfr before dialysis - is there any hope for me.
Thanks for reading
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fartikins
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Dear Fartikins, I think the counseling is going to be really beneficial for you. You seem to worry a lot about so much and it can be overwhelming. Remember, you are not alone in this journey and we are here for you.
As far as starting dialysis.... I am not sure how it goes over in the UK. But here in the US, the patient really has a say in when they start dialysis. It is all up to how you feel. I fight with my nephrologist every time I see her about it, and she knows that I will make an educated decision. When I start dialysis will depend on how I am actually feeling and how critical the lab numbers are.
What level I decide on may differ from you, so I am not going to say. I am Stage 5 and have been between stage 4 and 5 for the last 4 years. I am very careful with what I eat, I exercise, I manage my other illnesses, and I try not to stress. We only have so much control over our bodies and at some point, they do give out. WE should be grateful that there is a treatment for end stage renal disease, even if it is dialysis. Other diseases, such as cancer, do not always have this option.
Than you so much for your support. The nephrologist I saw yesterday told me more about my kidneys - they are scarred with from hbp or a water infection I have had for the past 2 years and I am still taking daily antibiotics for. I don't know if the efgr will go any higher or keep dropping because of the biopsy diagnosis. I follow the diet - exercise is a bit hard at the moment from fatigue - I don't sleep. My life is full of 'if only, s' and that is hard to bear.
We all have our "if only's." They do not serve you now. I do not know anyone past the age of 30 who does not have some "if only's" about their life. Can't change history. We can only protect ourselves for the future by learning from our life lessons.
What has made me depressed is that this could have been prevented if only my gp had informed me - it has really floored me because it has ruined my life now.
The what ifs and if onlys hurt us mentally, but doesn't change anything. What if they would have told me to avoid caffeine and put me on anti diarrheals 30 years ago when I lost my colon. Drs are human and make mistakes. It's better to just deal with today.
Hi Fartikins. I'm sorry to hear about your struggles. I think most of us relate to some extent. Sometimes I forget to remember the saying, "The past is gone, the future isn't here, only today is promised. Live and work in it fully". I've become very aware that my mind sometimes runs unchecked - throwing all sorts of dire and unwanted possibilities at me. So, occasionally, my brain (not my intents or interests) influences my life. When that happens, I've discovered that if one can devise ways to control one's brain, then one will be able to put the worrisome bugaboos in their place. So I try very hard to separate myself apart from that overactive brain of mine - putting it on a shelf and studying it, finding ways to override or ignoring the thoughts (meditation, exercise, watching a great movie, working on a hobby, etc.). I remind myself frequently to simply be mindful and to recognize that these are "thoughts" only, not "reality" and they will pass in time. I recall a time when my very sick hubby's was hospitalized by his transplant team, intent on turning around his situation. I was in full blown "widow" mode - battling back tears, assuming I would soon be alone, planning out a funeral, obsessing over finances, where I might go to live alone, etc. Then, while I was walking down a hospital corridor, reality suddenly struck me. What on earth was I doing? My hubby was still alive! To just stop it! So, I made a checklist of other things to focus on, some with deadlines. (Speaking about an over imaginative brain - my hubby is very much alive and well today.) As I type this, I'm still very aware of the line between reality and the abstract. Please don't "suffer today" with situations that may never happen, spinning your wheels unnecessarily and prematurely and wearing yourself down. Set them aside - trust yourself that you will handle them when the time is "right", should they even occur. I sense that you, with the support of your therapist, will also find methods and tools to put proper perspective back into your life. Life is indeed meant to be lived well - one day at a time. Wishing you well on your journey to bring peace and balance back into your life.
I think people put too much emphasis on the GFR#....What matters is how clean is your blood and how do you feel....My Neph told me at a GFR of 20 that I could get on the Transplant list....at a GFR of 15 or below that I should think about Dialysis..they are only a measurment....and the main thing they concentrate on is how you feel...I bounced around at 25 to 20 for over 3 years...but my Labs were stable and I never really felt bad...at 12 GFR I decided to go ahead and begin Dialysis and I started Home PD and the first thing I realized was most of the horror stories I had fretted about were baloney...It does take some time and organization but I actually spend more time doing my dinner dishes than I spend setting up and doing my Dialysis...I also realized that Dialysis was not the "monster in the closet", but that it was my Friend.... Dialysis is not the End of the World.. .
It is what stops Our World from ending
So take this time and figure out if you want to get on a transplant list...and what type of Dialysis that would work the best for you...make some plans..get organized ....and then forget about it...do things now that you feel you might not be able to do after you start Dialysis (although I have not found one thing I couldn't do while being on Dialysis) ...and get back to the buisness of living
I know its easier said than done but u need to take a deep breath and calm down. I agree with Bassetmommer, I think the counselling sessions will be very beneficial to you. Right now everything is overwhelming you znd you can't think straight. Yes you can fit your counselling sessions around dialysis. It won't be easy. However if i can do haemodialysis and work, then you can do therapy to improve your life I was fine with a gfr of 9. Determined not to go on haemodialysis. However one day I woke up and I just knew it was time. I wont lie, dialysis will be another roller coaster ride on the kidney disease train. You will have bad days but you will also have good ones. If you attend hospital for dialysis u will meet other people in the same boat. Believe me, some will make you thankful for your own level of health issues. Make an effort snd talk to people. Most will have gone through the same thing. U will also be closely monitored regarding bloods etc so no need for stressing about seeing your GP etc. Have you discussed the fitting of a fistula? I felt an absolute failure when I was referred for dialysis. You start to realise its not just you having these dark thoughts. Its almost text book stuff for people starting dialysis. You have got this far. Now you keep going and take it one day at a time. Dialysis is not something anyone would choose. However there are so many other illnesses etc that have more aggressive treatments. Give yourself a few days to feel sorry for yourself. Then get on with it. Sorry if I sound brutal, im talking from experience. You have got this x
Thanks for that - but I have also been diagnosed with an illness that is affecting my sleep. The medications I have to take cause horrendous constipation which causes me a lot of pain as well.If I just had the dialysis to deal with it would not be such a battle to keep my spirits up. I was 'normal' until February of this year when I got diagnosed - I am 73 - I was still working in a job I loved but I have had to give that up. Life can be very cruel sometimes.
I a few others have said, my clinic goes more by how you feel than your gfr number for dialysis. 15 is the magic number to be placed on the transplant list but even then, people's numbers jump around a whole lot and that's pretty normal. I know people who have waited and their gfr was 8 when they finally went on dialysis, so depending on how you feel, you probably have a ways to go.
When mine dropped to 19 and my nephrologist said calm down, take a deep breath, and let's do more labs in 3 months, it gradually climbed to 23, then 28 and now a couple of years later with a lot of hard work it is bouncing around in the low 40s.
I don't know you so please understand that I am not criticizing you but after reading your posts I am concerned your negativity is going to affect your outcome. I sincerely hope that you have some success with meds to lift your depression so you can look to the future with some positivity. Also get your sleep sorted, as a lifelong insomniac, I know lack of sleep can seriously change your outlook. Sounds like you are working on that though. Keep at it.
I really think you will benefit from counselling, you are very fortunate to get it given the current state of medical care at the moment. Look at it as a time you can unload all of your fears and emotions on someone who will not judge you, but just listen. It's very cathartic and perhaps just what you need right now!
I too am furious I was not diagnosed sooner. I just started with an app called MyChart and labs from 10 years ago showed up, my creatine was sky-high and my gfr was in the 20s.
No one told me.
But I know that anger is not productive. The past is the past and I can't do a damn thing about it. Sitting around stewing will not change things.
It's interesting though, to note that even with that low gfr, 10 years ago I was still a competitive athlete and living a very full life as a single Mom to 2 kids! No symptoms!
I lived in ignorant bliss for 5 odd years until my gp finally noticed my gfr was in the 20s!
I am sad that I wasn't able to start a Renal Friendly diet and see a nephrologist earlier but I'm dealing with those things now. All you have is now and the future. You have to move forward despite past mistakes.
I wish you the best for the new year and your CKD journey. I think we all have the dialysis question lurking in the back of our minds but that's where it should stay for now; in the back of your mind. Live for right now and look to the future. Happiness is within reach, you just have to find your joy!
Thanks so much for your reply. It is so hard - I am battling on all fronts but I agree the lack of sleep is a big issue and I have to take medication for it which I don't like to do. We lost our daughter a month ago to cancer after her 7 year battle. The family could do with some help from the big man in the sky now.
Dear Fartikins: In the U S they dont push dialysis til you get below 10 GFR. And they want new labs drawn every 3 months. In my case, I've had a slow gradual decline and I refuse to be a pin cushion. I get my labs done every 5-6 months as I've been stable. I found most of my dr visits to be nothing more than social visits! I decide how I live my life, not drs or anyone else!
They try to rule you using fear tactics in my opinion. The drs I've been seeing start dialysis at GFR 7. Relax, you have some time left, I am sure!
Sorry to hear this my gfr was 6 and my creatinine was 12 which was off the charts for both was rushed to hospital had to start emergency. Dialysis in hospital I also was suffering that week from uremic poisoning poisoning which was painful in all my joints burning pain I had been on a renal diet for the last 2 years before this happened due to bladder cancer they removed my bladder which was successful I am cancer free now but they built a urostomy on my stomach which is my new bladder my kidney ureter is tied to this urostomyand then a bag on my left kidney is a nephrostomy google it its a catheter inserted in my left kidney to drain the urine so with all this going on my gfr and creatinine went haywire, I go to dialysis 3x a week home nurse comes 2x a week on the days im not at dialysis to clean urostomy and nephrostomy and change the bags it is quite a lifestyle change but the good news is im not in pain and I am alive vs the alternative I am retired so my days during the week are all medical with weekends off..its been a hard journey for me I resent the time I lose in my life just to be able to survive but with a good attitude friends family support there is that to help me. The hardest part of all this is to get up at 330am 3 x a week to start my dialysis at 530am but I am home by 1030 and still have rest of the day for myself...... when first diagnosed with kidney failure you need to adhere to a renal diet to help save your kidneys its all in your attitude to save your own life we can't function without kidneys
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