Hi all
I am in need of some advice or just some thoughts on the story I am about to tell.
I am a 58 year old male who was diagnosed with PKD in 2005 I was put on the standard drugs to reduce my blood pressure and have been seeing a nephrologist once a year and then twice a year as my GFR deteriorated it is now at 22 and my potassium is at 5.9.
I suffered a severe heart attack in 2013 while on holiday in Spain where I had 3 stents fitted at the university hospital in Malaga, unfortunately the heart attack left my unable to work as I suffered damage to the nerves in my hands and feet and as a Plumber earning a living was/is impossible.
Having recently moved house from Essex to Suffolk I have had to change Hospital and nephrologist. Two weeks ago I attended an appointment that I had to make as it had been 9 months since seeing the new nephrologist which as you can imagine I was less than happy about, well things went downhill rapidly when I expressed my concerns over my care or lack of, ( I learned a long time ago to not take everything a Consultant says as gospel) after 10 minutes of heated debate he then took a look at my scan results as I also suffer with kidney stones, each kidney having many 10s of stones, he then asked me who had diagnosed PKD I gave my reply he then proceeded to tell me that I DID NOT have PKD !!!!!!!!
I naturally asked if it’s not PKD what is it? he said he did not know!
He sent me for a blood test which would be sent to Addenbrooke’s for genetic testing.
He also said he would see me in 10 weeks time!
I have since received a letter from him stating all the above.
As I do not know anyone with CKD have never met anyone with CKD and no one in my family has ever had CKD I think this may the best place for advice.
Is it reasonable that I should wait 10 weeks to find what is causing my CKD?
How can my 2 previous nephrologist’s got it so wrong? For 15 years
I would like state for the record I don’t think it makes any real difference what actual Kidney Disease I’ve got but I just don’t know.
Thanks for reading
Go Well
Mick
New nephrologist shock, advice welcome
Moderator: administrator
Re: New nephrologist shock, advice welcome
Hi Magneticmick,
I agree, that must be quite a shock.
PKD is usually passed on through your parents genes, normally there is a 50% chance of the condition being passed on to children, therefore there is usually a history of PKD in one side or the other of the parents families.
CKD (Chronic Kidney Disease ) is a catch all name for kidney failure, high blood pressure tends to destroy kidneys but there are many other causes of kidney failure (including PKD).
With a eGFR of 22 you should be OK for a while yet, dialysis is usually considered around a kidney function of 10% depending on the patients health.
So for the moment you will have been having blood test to monitor the progress of the deterioration in your kidneys function, as the function declines the frequency of test will be increased.
Ultrasound scans is the usual way of confirming PKD, the cists on the kidneys will show on the scan.
As to the 10 weeks, all Nephrology departments up and down the country are grossly overloaded so none urgent cases tend to be delayed a bit, your new consultant will have written to your old one for more information on your original diagnosis, and this may result in an exchange of opinions which all takes time.
Addenbrooke's is a centre of excellence for Nephrology, and as such are particularly hard worked.
If it was me, when I next saw the consultant I would attempt to repair the relationship because you and the consultant are going to have a long relationship, and it is best you get on with each other or you can speak to the hospital PALS office, and see if they have other Nephrologists you could see.
I am a patient, so these are just my thoughts not a medical opinion.
Best wishes.
I agree, that must be quite a shock.
PKD is usually passed on through your parents genes, normally there is a 50% chance of the condition being passed on to children, therefore there is usually a history of PKD in one side or the other of the parents families.
CKD (Chronic Kidney Disease ) is a catch all name for kidney failure, high blood pressure tends to destroy kidneys but there are many other causes of kidney failure (including PKD).
With a eGFR of 22 you should be OK for a while yet, dialysis is usually considered around a kidney function of 10% depending on the patients health.
So for the moment you will have been having blood test to monitor the progress of the deterioration in your kidneys function, as the function declines the frequency of test will be increased.
Ultrasound scans is the usual way of confirming PKD, the cists on the kidneys will show on the scan.
As to the 10 weeks, all Nephrology departments up and down the country are grossly overloaded so none urgent cases tend to be delayed a bit, your new consultant will have written to your old one for more information on your original diagnosis, and this may result in an exchange of opinions which all takes time.
Addenbrooke's is a centre of excellence for Nephrology, and as such are particularly hard worked.
If it was me, when I next saw the consultant I would attempt to repair the relationship because you and the consultant are going to have a long relationship, and it is best you get on with each other or you can speak to the hospital PALS office, and see if they have other Nephrologists you could see.
I am a patient, so these are just my thoughts not a medical opinion.
Best wishes.