Kidney Patient Guide

Hello, this is my first post here...after visiting my gp yesterday and having microscopic haematuria and hypertension (both ongoing) I'm now waiting for a blood test tomorrow and a referral to a Nephrologist.

I'm a 34 year old woman who is otherwise fit and healthy and on no medication. I have a huge phobia of all things medical and just wondered if there's anyone who can advise me of what to expect from a first visit to a Nephrologist.

Keith Elliott wrote:My first visit to a nephrologist was super easy. He asked a bit about family history etc, took my blood pressure (which was high .. hence my referral) and then had some blood tests done by a nurse. He then talked me through why taking blood pressure tablets would be a good idea and that was it.

I think that he then wrote to my gp about the blood pressure tablets (which did I started taking despite not wanting to / realising how important they were) and I didnt see him again for a while.

That was 25 or so years ago now and apart from me asking questions occasionally the theme of asking how I'm doing, having some blood tests, checking blood pressure and talking me through any different medicines I might need to take is pretty much repeated every time.

hope it goes well for you

take care
Keith

Many thanks for taking the time to reply Keith. My gp started mentioning a few pretty scary outcomes yesterday which hasn't helped with my anxiety, but reading your experience has made me feel a bit better.

My gp has wanted to put me on medication for my bp which I have so far refused but perhaps after seeing the nephrologist this is something I may be more willing to consider.

Thanks again.

I can't stress enough how important it is to control your blood pressure. Kidney damage causes high blood pressure and high blood pressure causes kidney damage, which means unless it's controlled you can get a lot more ill. No one likes taking tablets, but sometimes it's a necessary evil.

Good luck with your appointment.

I find nephrologists as a bunch a very reassuring and personable group of doctors.

Most people with renal issues tend to be chronic rather than acute, so they wind up going to the same clinic for a long time. I've been going to the same clinic at the same time for more than 6 years. This gives you the opportunity to get to know the doctors quite well, and vice versa. This in turn means that Renal medicine attracts doctors who are quite good at pastoral care and long term relationship building, which makes them friendly & approachable.

If you're used to dealing with A&E doctors or your GP, I think you'll be pleasantly surprised by the attitude of the Nephrologists, I know I was.

To which hospital have you been referred?

Tibbs wrote:I find nephrologists as a bunch a very reassuring and personable group of doctors.

Most people with renal issues tend to be chronic rather than acute, so they wind up going to the same clinic for a long time. I've been going to the same clinic at the same time for more than 6 years. This gives you the opportunity to get to know the doctors quite well, and vice versa. This in turn means that Renal medicine attracts doctors who are quite good at pastoral care and long term relationship building, which makes them friendly & approachable.

If you're used to dealing with A&E doctors or your GP, I think you'll be pleasantly surprised by the attitude of the Nephrologists, I know I was.

To which hospital have you been referred?

Thanks, that's reassuring that hopefully the whole experience won't be too bad. I'm not entirely sure which hospital I'm being referred to, I'm assuming UHNS in Staffordshire.

Hi squid,reading your story reminds of me ten years ago,as said the blood pressure control is very important and the Nephs are an ok bunch,i am on my third different neph and he is by far the best out of the three,he has even taken the trouble to phone me on my house number to discuss blood results in the past when he could have just asked his secretary or sent out a letter,i appreciated that.

Try not to worry (i know its easier said than done)depending what your function is you will most likely be visiting the same unit a couple of times a year for bloods and check ups etc,hope it goes well for you.

I am now down to 19% and holding on for dear life,i dread the thought of any kind of dialysis but if i try not to think about it sometimes i can almost forget its going to happen at some stage.

Take the BP pills, they are the possibly the most important drug any kidney patient can take.

Don't worry overly at this stage, you will need quite a few tests before you get a diagnosis, there are several types of kidney disease, and they're all very different, so there's no point in worrying about the possible outcomes when you don't yet know what the problem is.

The nephrologists are very understanding, you'll be fine. Although I remember when I was first diagnosed, at about your age, I was told rather abruptly, that I would be needing a transplant in the future (which was quite earth-shattering at the time), whereas they sat me down with a counsellor and a cup of tea to break it to me gently that it wouldn't be a good idea for me to have children (which I found hilarious, as I was still nursing my boyfriend through his recovery from a vascectomy a couple of days earlier).

Thank-you for all the replies, I am finding them reassuring and although I can't stop worrying they are helping. Other than the microscopic haematuria and a bp that's usually around 150/100 I don't really have any symptoms...it's the not knowing that I'm finding the most difficult. I'm also wondering whether I have something that can be cured, or whether as many people here seem to be, I'll be looking at some sort of long term treatment.

It's a difficult thing to get your head around when you're told you're ill but you feel normal. I think I spent years fighting it before I accepted that it was real rather than made up.

In my experience, nephrologists are a cautious and attentive bunch. I find them thorough and reassuring in the main.

Had my blood test this morning and should have the results on Monday. The nurse said I hadn't been referred yet and that the gp would wait for the blood results before referring me.

If I am referred to a Nephrologist I understand that there is a choose and book system now so I can choose which hospital I want to go to. I'm unsure how this works...should I be looking for a hospital where I'll be seen quickly, or is there any way of comparing Nephrologists at different hospitals??

Keith Elliott wrote:If you're given the 'choose and book' thing then (if it were me) I'd have a chat with my gp to see who/where they thought the best person/place to see would be. They'll know who is good.

good luck!
take care
Keith

Will they refer me to who they think is best or just send me to wherever is most convenient/cost effective for them? I have no idea how all this stuff works. Don't just want to go to the closest hospital if it's not the best option

Keith Elliott wrote:...hence the 'have a chat' bit

'Best' is difficult to determine ... it could be who you as a person feel most comfy with or it could be who has the best outcomes for your condition (tricky one if you don't know your specific condition yet!) or it could be which centre has the most capable doctors .. or it could genuinely be where it's easiest to get to.

For me I chose 'best overall calibre doctors' versus distance (they are 75+ miles away) and then managed to find a doc that I was comfy with. But different folk look for different things. My gp advised me where the best calibre docs were (from my available choices)

If you want to research various renal centres there is information available through the renal registry as to how they perform relatively against various criteria... this link :

http://www.renalreg.com/index.html

gets you there and the 'atlas of interactive maps' button takes you to the data area and allows you to make comparisons.

I'm not sure how helpful I found it in my decision process but it is something.

When you know your choices you can also ask folks on here about their experiences of course.

take care
Keith

Thanks Keith, there seem to be so many decisions to make, obviously one of the most important factors for me is finding a doctor I feel comfortable with, then I need to balance that with finding someone who's good at what they do. Distance is a factor I need to consider if I'm going to need regular appoinments, and the hospitals cleanliness (especially in terms of MRSA cases), is a key factor if I need any sort of surgery. Also I want to be soon as quickly as possible...

All these what ifs are playing on my mind. I will talk to my gp, but again, I've only been with this gp a short amount of time so don't really know them as such, and therefore don't know how helpful they'll be in helping me make my decision.

As Keith has indicated, what we want from our Docs varies from person to person.
I'm just chipping in my 10 pence worth to say that I am seen at UHNS and have been a renal patient there for the last 10 years - pre-dialysis, on peritoneal dialysis, transplant and, thankfully, 6 years post-transplant and counting.
The Consultants that I have seen ( and UHNS have a system whereby it depends on what stage of kidney problem you are at as to which Consultant/Doctor you see) have all been wonderful.
They are very human, kind and understanding and knowledgable but also, honest. They tell it as it is rather than how we may want it to be!
The renal Nurses I have had dealings with from UHNS have also been great and very efficient.
I have nothing but good things to say about the whole renal team and would not want to go anywhere else.
The only grumble I have is that out patients has a tendency to run late and so you may sometimes have to wait an hour or more to be seen - but I just remind myself that I am lucky to be a trouble-free patient and others are not as fortunate and therefore need more time. The queue for having blood taken is also an inconvenience but on both these issues, I have seen improvements over the years.
As you have pointed out, as a renal patient there are potentially a lot of years of appointments to look forward to (!!) so it may be an idea to try UHNS first and if you aren't impressed for whatever reason, then you could ask to go further afield.