Do you think your GP has adequate kno... - PKD Charity for A...
Do you think your GP has adequate knowledge of PKD in order to treat you?
No! And the annoying thing is that they don't know how much they don't know... I think they are too ready to treat symptoms according to what they generally see, and don't stop to think that it might be different with PKD -- like the emergency appointment because of pain where the stand-in GP was suggesting that I take ibuprofen!
But, at the same time, I feel my own GP is too ready to just leave things to the consultant -- even though I may not see him again for months.
Absolutely not!
No. She is willing to phone a friend though and admits when she needs to. One GP in the practice does have kidney practice but getting appointments is hard. Others are too pig headed to admit that they know nothing. Unless the GP works in a renal ward as part of their housemanship the only training they get is half a day on all kidney conditions in 7 years despite the kidneys affecting so many of the other body systems. This is wrong.
GPs have half a day on kidney diseases whilst at university. When they do the hospital training some spend time on a kidney ward and these are the ones worth seeing. Unfortunately these are few and far between.
The majority dont know enough about the disease and sadly not enough realise this and are prepared to readily ask consultants for advice. They should have the willingness to phone a friend as we are all working towards a common goal - the patients health.
i dont no who to believe the kidney doctor said in about 2yrs i will need transpant that is nearly to yrs ago my gp today said the hospital is wrong i have about 20% left of kidney my gp reckons it will be yrs be4 i need one i dint no who to believe
The first GP I dealt with, with what I now know to be PKD, was to dismiss my concern about kidneys when I had repeated UTIs as incipient diabetes (when it was known that a bifid renal pelvis had caused UTIs 20 years before). So, my experiences are much like SomersetMark. The one described was the conceited "I know more than you" one. The better ones (usually locums) say "I've not seen this before but I will find out more". When I get an admission like that I usually have more confidence.
My PKD/PLD showed up when I had severe pain under my right rib cage, after 24 hours I couldn't take it anymore and saw a GP who diagnosed gallstone pain and referred me to RLI (Royal Lancaster Infirmary). I was in there for a few days and under the Liver specialist. I was scanned and they identified both liver and kidney cysts. On discharge from the hospital, the first GP I saw admitted that she knew little about PKD/PLD and spoke to the specialist before prescribing medication (I really appreciated her honesty). My own GP spent 5 months experimenting with various tablets to bring my blood pressure down and it is now at a regular level with a combination of amlodipine 10mg, ramipril 10mg and bendroflumethiazide 5mg. This was also reassuring and I do feel that he listens to me but that he doesn't act on what I say. I begin to wonder if I am being overly concerned about seeing a PKD specialist as well as a PLD specialist but I just think that if I can speak to someone about my kidneys I will feel more reassured. I am also concerned about aneurysms too and have not been tested for this. (My father died from an aneurysm aged 52, he had PKD. I have explained this to my doctor). I think, from online calculations (which I know cannot be relied upon but in the absence of anything else ...) that I am in early stage 3 PKD. My sister has just been told that she has 25% kidney function left. She is 68, very fit and active and is in Stage 4 kidney disease. If I can continue to go on as she has I will be very pleased. I don't let it affect my life now but I am careful not to do any 'contact' sport etc. eat healthily and I do become very tired so I have to factor in rest, otherwise I can just fall asleep in the late afternoon ...zzz
I thought that a scan for aneurisms was essential for PKD patients? The scan is not the most pleasant experience but not terrible. A bit like having your head in a bucket while some someone bangs the bucket with a spanner.
I think this may be because I am only seeing the PLD specialist and not the PKD specialist but thanks for the description, it is very vivid and will be helpful if and when I eventually have one. One of the scaries things that happens is the way the specialists do not take my questions seriously. I asked the last specialist whether my liver may enlarge and he just laughed and asked if I'd been on the Internet. I do research in my line of work and read as much information as I can and I know which information to dismiss and which to consider. It feels so insulting at times, it is as if they just want you to sit, be quiet and let them write up their computer notes! I sometimes wonder where the human being is in the process.
I am new to this site . I found out when I was 23 that I had pkd. Inherited from my mother's side of the family. I however , passed it on to my daughter. I am at the very end of stage 4 renal failure. I had recently had surgery for av fistula . I found out today that it failed and I have to go back to surgery in the coming week or so. I found out 3 years ago that my liver has been affected by my pkd. I was told that my liver is severely enlarged with cysts covering the entire liver. My liver has displaced my stomach, small intestine, and colon. I am now getting ready to go through the tests for kidney and liver transplant. So as much as I hate to say this, but yes, it can affect your liver. It sure has affected mine. I wish you the best.
Hi Guys,
Let me introduce myself;
I was diagnosed with PKD about 15 years ago, I signed up to this forum yesterday,my last estimated GFR was 13, which would put me at stage five, however my consultant say that it is an underestimate in view of muscle mass, putting me in stage four. I am supervised by the renal team at Safford Royal Hospital.
This forum puts the question “Do you think your GP has adequate knowledge of PKD in order to treat you?” I don’t think there is a simple answer. Of course the GP can’t ‘treat’ the disease he may however treat the symptoms.
GP, stands for General Practitioner, they are neither paid nor expected to be specialist in any of the myriad of conditions that affect the human body. They treat general ailments, most of which will right themselves without intervention, the real skill of a GP is knowing when to refer and to who.
The early treatment of PKD it about maintaining a healthy Blood Pressure and keeping an eye on the kidney and liver function, a GP can do this.
It is my opinion that once PKD has been diagnosed (so long as it’s early enough) the GP can (with guidance from the renal team) manage a patient’s Blood Pressure and monitor the kidney and liver function. When the function test fall to an agreed level the patient should be referred to the appropriate consultant.
Absolutely no. The doctors keep arguing that PKD causes no pain and act as if its a mild condition. Well, I'm a patient and like many patients I can testify that it causes plenty of pain and if you don't do dietary changes and observe an alkaline diet, your life is pretty much hell and you can't function.
IN MY OPINION THEY SEEM TO KNOW BASIC INFORMATION
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