I’m writing to share a recent distressing consultation I had with a Nephrologist two days ago. I have been attending a Kidney Clinic for a number of years now but as my GFR has dropped below GFR20 on the last two visits to the clinic (currently GFR17 and CKD Stage 4) I was referred to the Advanced Kidney Clinic which I attended two days ago. As soon as I got into the room and sat down to see the Doctor he turned the computer screen towards me and showed me a Line Graph and immediately said “your kidneys are declining.” About a minute or two later he turned around in his chair to face me and then said in a matter of fact way “you are coming to the end of your life.” I was shocked to hear that so I asked him what sort of life expectancy time do I have and he just replied in the same manner “about a year to 18months”. I said “what about Dialysis?” He simply replied that “50% of the people who go on Dialysis can’t tolerate it, it makes them feel too ill, and they have to come off of it.” I then asked that “if I was to be one of those that couldn’t tolerate it and had to come off it what would then be my life expectancy once I came off it?” He answered “2 weeks.” I was stunned! He then went on to say “we will give you Palliative Care, look after you and make comfortable” alluding to the end of my life! When I asked the Doctor when I would see him again as I was attending the clinic every 3 months to date he replied “you will see the Kidney Nurses next in 3 to 4 months.” When I asked about what symptoms I might experience in the future (nothing significant at the moment) he replied in a matter of fact way again “legs and ankles will swell, nausea or being sick, feeling generally unwell, poor appetite and you will get a bad taste in your mouth.”
This was vastly in contrast to what I have been told at my fairly recent previous Kidney Clinic consultations over these past years and when I have asked about my future prognosis and voiced my concerns and worries tontwo separate Doctors they have always replied with something like “don’t worry David, we have options and there are things we can do to look after you” etc.
It was all doom and gloom in this latest construction with no positive comments or any reassurance at all! I have asked my GP to refer me to a different Nephrologist for a second opinion and I have today been in touch with PALS (Patient And Liaison Service) to voice my concerns and they have emailed the relevant team Consultant in an effort to get me an appointment for a consultation with her.
I am shocked that only being at GFR20, he’s consistent the end of life.
On what basis is that, as dialysis is an option for sure and I would be gobsmacked as well if my consultant said anything similar to what you have experienced.
I am EGFR 13 and recently had my fistula procedure in preparation of dialysis and no talk of dying here! Even with cancer as a side issue
I hope you get a 2nd opinion and it is a more measured and sensible response.
I just can’t fathom how the doctor has managed to come up with any of this information.
I am sure that even if your kidneys have completing failed, only then would you have a few weeks, but that isn’t necessarily the case just because you come off dialysis.
On that logic, I could be on dialysis with eGFR 10 and the doctor suggests I’d be gone in 2 weeks if I stopped it? Absolute nonsense
I am sure you will have a better experience in the future
From my personal experience I would say this guy is a scare monger. Sure as your kidney function decreases you need to take more care and prepare yourself mentally for dialysis. But as your previous Dr. Said there are options and at an Egfr 20 there is still a possibility of improvement in function as well with correct care I would think.
This dr has a terrible manner. To express the seriousness of a patients medical condition should be done in a clear and caring way, not the way he treated you.
Good that you are getting a second opinion, and have reported him to pals. Other patients may not have a support system around to talk to if he’s not corrected.
I am very glad you are getting a second opinion - and what a dreadful ‘bedside’ manner! I’m so sorry you now have to deal with the emotional fallout from a doctor’s interpretation of a decline and their manner of conveying their interpretation. I do hope that the second opinion is more positive for you.
Thanks Sara, I’m hoping for a more positive explanation of my circumstance later this week and your encouraging words make all the difference to what have been a concerning few days so thank you
This doctor needs to go back to college for a course on dealing with patients. My consultant is wonderful and even gives bad news in a compassionate way. Im not sure about dialysis but there are units all over the world with people coming back for treatment for years. It’soften seen as a stop gap between your kidneys stopping and a transplant . People who can’t handle it, I believe often have co-morbidity or can’thave a transplant and even then it’s the mental toll . My unit has people with heart failure and other conditions yet they can do it.
Ignore the way the doctor gave you the news and focus on that he said, if you need dialysis and dont get it its a quick death and some people do choose that route. I might have if I’d been 20 years older
Thank you Goose64. I’m in touch with Kidney Care UK and a support team member is going to call me tomorrow as they believe that I haven’t been treated well by this Doctor and the information that he imparted to me was not completely correct. Thanks for taking the time to comment on my post and for your reassuring and kind words. All the best, David.
I agree with that Chalky, I had a 30 minute call from them today and the Support Advocate I spoke with, Ellie, was excellent and at the end of the call she said that I could call her at any time should I need to.
By the way, I had a phone call this evening from the Consultant who heads up the team that the original Doctor I saw comes under and she is seeing me for a face to face appointment next Friday at Kings College Hospital in London.
This was following an email sent to her from PALS last Friday about how I was treated and my concerns . I hope to get greater and true clarification on my current condition
That’s great news and sounds really positive now with the hospital.
Kidney care have peer support too, they put you in touch with someone in, or who has been in, your position. I have spoken to their peers about home dialysis and transplants, it helps as the person can answer your questions and has been there
Thanks for that peer support suggestion, I’ll certainly look into it as it would be good to learn of other’s experiences and how they relate to my own ongoing experiences
Having just read this sorry about your experience. It’s had me sad all day. I’ve also got a son 23 with kidney disease stage 1 at present. This is worrying if this is the attitude of the consultant. I worry for my sons future. I hope you get a better second opinion I feel for you. That’s not how u should be treat and there should be options. Xx
Thanks Kathy, I hope for better news when I see a Consultant for a second opinion tomorrowSorry to hear about your son but being at Stage 1 he is at the very start of the journey and if he follows all the advice of the Doctors he will be well for years. When I was first diagnosed over 20 years ago I came in at Stage 2 so progression to my now Stage 4 been very slow and bear in mind that treatment and medications is so much more improved now days and is advancing all the time so I hope this gives you a degree of hope for your son’s current condition and some reassurance for a positive outlook going forward. Best wishes, David.
