First visit to Nephrologist

[itzmich]

What will they do on my first visit?? I have been diagnosed with 3b ckd. I am overwhelmed, should my husband come with me? I'm assuming more blood work have had an ultrasound....anything else I should know or do?

[Bet117]

Hi Itzmich,

Sit tight. It is very normal to feel overwhelmed at the thought of a nephrologist appointment after a recent diagnosis..we have all been there.

Remember that you are taking care of yourself by following up on this!

Every doctor is different, some will examine you and send you for labs, others will ask for a urine sample when you arrive, assess and then send you for labs, etc.

See if there are directions on your patient portal or call the office to check.

If you have copies of your most recent labs, take them with you as well as a small notebook.

Jot down any questions or concerns and ask..also what you discuss at the appointment; medications

diet, etc.

I do this at all medical appointments.

My husband does come with me and scribes during my nephrology appointments; simply to hear what is said and is a second pair of eyes and ears, but the decisions are ultimately mine.

We usually make a day of it by going to lunch/dinner after.

Below is an article from the NKF about what to expect at your first nephrology appointment which should give you a starting point. It basically reiterates alot of what I have said and goes into common sense detail but is worthwhile reading.

It will all be good. Let us know how it goes...we are behind you!

Keep that thought.

B...

Link:

kidney.org/newsletter/your-....

Article:

Your First Visit with a Kidney Doctor

By: Katie Pickard and Erick Smith

Satellite Healthcare PATHfinders™ in Texas and California

Referral to your kidney doctor, a nephrologist, can come with a variety of emotions. These are some of the steps you can use as a guide to prepare for that very first visit.

This will be a good start until you become more and more comfortable at each visit.

This could be a bit overwhelming when you first look at it! The best way to start is to take care of two or three tasks at a time so it doesn’t feel like too much all at once.

Before the appointment

Support is important throughout the process.

So talk with a family member or friend who you would be comfortable coming with you. They can assist with the information and making decisions. Write down a list of questions and concerns in a notebook that you bring with you.

Ask the office these questions before the appointment:

1. What type of physical examination(s) will be done?

2. What type of clothing should I wear?

3. Will a urine sample be needed at the beginning of my appointment?

4. Where should I park for the office/department?

During the appointment

Plan to arrive 15 minutes early to the office.

Bring information and items with you to the appointment. All this information will not be given to the doctor, but may be given to the registration clerk, medical assistant or nurse.

That information should include:

-A list of symptoms and how long you have had those symptoms.

-A list of all of your current doctors with contact information.

-An updated list of medications.

-Current insurance cards.

-Your medical history.

-A surgery list

Some patients have other items they can bring. For example, if you have lab work done at an outside lab, make the office aware at the visit. If you check your blood pressure at home, bring your blood pressure cuff to the visit so they can check your cuff as well as the blood pressure readings. Also, if you check your weight at home, bring a few recent weights.

- Questions you can ask....

These are some recommended frequently asked questions for a first visit with your nephrologist:

-Why have I been referred to a nephrologist?

-What is the reason my kidneys are not working properly?

-What stage of kidney disease am I in and what does that mean?

-How rapidly is my kidney function declining?

-What can I do to slow, delay or reverse the decline in my kidney function?

-What are my options for treatment and how do I learn about these options?

-What are the side effects of each treatment option?

-Who should I call with new problems or questions?

-Are there any special diet guidelines that I should follow?

-Do I need to make other lifestyle changes?

After the appointment

You’ve made one of the first steps in the process to understanding your kidneys and kidney disease.

Education is the next very important step. Contact NKF Cares Helpline (1.855.653.2273 or [e-mail]) to receive free information, tools, and resources for protecting your kidney function, diet and lifestyle changes and your treatment options.

Educate yourself about your options because you do have options. Make the choice that is best for you, your lifestyle and your future goals. These decisions should include a team of people such as trusted friends, family and your new nephrologist.

[itzmich in reply to Bet117]

Wow thx so much!

[Bet117 in reply to itzmich]

Goodness, no thanks needed!

Hope I was of some help..

Great for me to re-read it..

I will be waiting for you when you come home from your appointment.

Think positives!

Bet

[RickHow]

Hello. We could all give you a lot of different advice based on our experience. But no matter what we say, being newly told of CKD, your current thoughts and fears will remain unchanged until after the visit, and some time. I was told I was 3b about one year ago. I had all the same fears you mentioned and probably all the one's you did not mention. It takes a while to adjust to the news. And over time, as you learn about the "disease" you will find most of those fears to pass. Not all be removed. But most will. Here I am one 14 months later. I have found that although I do some precautionary things, and have my moments of wanting to get the CKD out of mind and it won't go, my life has been really quite normal. Yes I have additional visits to the doctor, blood, urine and ultrasound testing, a few scattered days of obsessive worry. But it becomes just part of the new me. My daily life is only altered by following a sensible diet that I should have been following in the first place. Watching my protein, sugar and salt intake. NOT eliminating it. Just keeping within the daily requirements. I always was a "walker". So I maintain walking 3 miles a day. I always preferred water over most fluids (except my 2 cups of coffee a day, which I still do). But I make sure I drink at least 70 ounces. Basically that is it. As my doctors keep yelling at me, I must remember what is stage 3b. It is called "MODERATE" kidney disease. Now each of us is different. It has to be understood why we are 3b. What is causing the disease makes a huge difference. Is the decline cause by things like blood pressure or diabetes. Or was one kidney removed. Or other medical and medication reasons. Perhaps caused by things that can be treated and therefore not increase the damage already done. Or is it a failing kidney, or tumor, or kidney disorder. I find most of my visits to the kidney doctor to be pretty useless. There is occasional blood and urine testing. But that is about it. My gp has always done such testing, even before the CKD. And he still does. Again it depends on the cause of your CKD. For me, it is what it is. There really is no activity the kidney doctor can do except track me. There are no treatments. And my gp controls my blood pressure, etc., anyway. I bet, I hope, I pray

you will find after this visit you will laugh and say to yourself "what was I worried about, this visit was nothing".

[itzmich in reply to RickHow]

Thank you you've been helpful.

[Rkgaither1954 in reply to RickHow]

You said it all! The kidney specialists don’t do anything! A persons GP can do all of your labs. I really don’t know why they are called “specialists!”

[RickHow in reply to Rkgaither1954]

I agree totally. What really surprised me happened to me last July. I was in the emergency room and through got a CT scan. I was there due to a fall. they noticed on the scan that there was a suspicious growth on the tumor. Long story short, it was found to be cancer. Now would you not think that you would be sent to a cancer doctor or a kidney doctor??? Nope, neither one. I was not referred to a kidney doctor until 6 months after removal of my kidney. And all she tells me are the results of my lab work, which is nothing more than a duplicate of my gp lab work!!! I have not found a single thing that she has done, told me, advised me, that I already did not know from my regular everyday gp. :).

[jillab]

Hi Itzmich, first thing is keep calm, trying to look back on my first visit, 1 thing that will probably be needed is a list of what medicine you are taking regularly, if you have a note for yourself of any questions you want to ask might help, if you are anything like me, as soon as I leave I think of something I wanted to ask. The nephrologist has seen and answered all things before so don't worry about thinking it's a daft question they will just be pleased you are thinking about things. Mine likes me taking in blood pressure checks for in between seeing him, but each will have there own way of doing things, main thing is don't worry , my husband always comes with me, which I find useful as he will remember any things I don't remember when I get home. Good luck. Oh one more thing, I notice others saying they haven't gained anything by seeing the nephrologist but mine has really helped me with any queries I have had, the more you ask them the more they will tell you my own Dr.s have been hopeless .

[itzmich]

Thx