dialysis center dr vs nephrologist

[mommak]

My husband (being treated for ARF) is going through dialysis.  When he was discharged from the hospital, he was set up for dialysis.  We were told that the doctor that rounds at the center would meet on his case each month to determine what to do next.  Any time he asks them for information, or to do any particular lab or test or anything, he is told, the doctor will be here to see you next week. 
He was not scheduled, upon discharge from the hospital for any follow-up with nephrology.  This seems to be an oversight to me.  Since acute renal faillure can change quickly, shouldnt someone be watching him more regularly?  I feel like the center treats him like it is unrealistic to think his function would improve, and if I was him I would feel patronized by some of the responses he has been given, but it is not me, so all I can do is ask the questions.

Any thoughts or advice.  He is in a center that is labelled on the building as DSI, but all of his paperwork says Davita.  reading some of the posts here, it sounds like they have some issues, but I am guessing that everyplace has its issues and it just depends on what brand of battles you want to endure.

[Gerald Lively]

When I write a post, such as this one, I often begin by pointing out that, “you are not me,” and most people would not act as I do in situations such as the one you describe.  Given that, here we go:

For the next four months, my dialysis will take place at RIA in Chico, California, a competitor of the DaVita center who is also in town.  I made my mark here, early, because I felt deprived of an understanding of dialysis and the condition of my kidneys.  At the beginning I was a very sick puppy and I just submitted. Later I began attending the monthly “team” meetings that discussed my situation.  This team is made up of the Doctor, Nurse, Dietician, Supervising Tech, and the Social Worker. I made up a list of questions, made enough copies for each of them, then I accepted no answer that wasn’t satisfactory.  Here, they follow-up with a Doctor tour once each week while I am on dialysis. I posted those questions here, last month.

The team meeting that I attended became a confrontation.  Only then did the answers I wanted begin to flow.  Later that week when the Doctor was making the rounds, I stood (at the limits of the tubes connected to the dialysis machine) and bumped chests with the doctor.  Doing this in front of twenty other patients unnerved the Doctor.  But he answered me.

Advise (take it or leave it):

1.    Medical people often retreat into technical jargon when confronted.  Make them explain.
2.   Ask “why” certain conclusions were made.  It is an absolute that you need to understand.
3.   Always look for options.  There may be none but this can lead to your understanding of the problems you face.
4.   Don’t take the word of the Nurse or Technician as gospel.  While you need to be informed, it is the Doctor’s word that counts.
5.   Demand all documents and reports on your blood work. (husbands).  Use these as a basis for your inquiries.
6.   Right here on “I Hate Dialysis” you can get clues about what is happening to you and your husband.  Ask!  Frequently!
7.   Never apologize to them for your behavior.  It is their responsibility to inform you. Remain a force in that environment and they will respect your wishes.

Gerald Lively

[Katonsdad]

I have had a great relationship with my Neph for 6 years . We have worked hard the last
2 trying to save the donor kidney . It was an up hill battle until I lost it last month.
I was in the hospital for 18 days and saw this man about 15 of these days,
He got me into a nearby center that was being remodeled and not taking new patients at the time.

I was discharged and sent home with a day to be the center,  I called my Neph and was told by his nurse
that I would need to pose all questions to the center . They would get all answers for me,  I saw this Dr because I trusted him
and he was always straight forward with me.  Now I can only see him on his days thru the center or one
of the partners.

I was getting my access put in and was told the day before at 5 pm that I had a temp and they could not do the surgery the next
morning,  I was flabbergasted and very upset.  I informed the center I was very upset and this was not right.  I left
after treatment , of course and stomped off to my home.  An hour later. my Doctor called me and informed me that they could not save a room
if someone was going to be sick and not available.  just hearing him and knowing he was involved in the situation calmed me down,

I appreciate everything he does but would like to see him more often.

Katondad

[sullidog]

My neph is very good, he takes his time with us, and he's very up front about stuff. I also have a good relation with my vascular surgeon, both of these docs have a great bedside manner as well. Most v surgeons will only step in when needed, but mine sees me every 1 to 3 months even when the access is working well just so that he can catch any problems his self and fix them his self so I don't have to have the center monitor it and refer me to a radiologist that has no clew about the access. Yes it is very important to make sure you understand everything the doctor is telling you.

[Riki]

Most of us here have CKD, and if not yet on dialysis, it is an inevitability. Acute kidney failure is much different.  Many with acute kidney failure get their kidney function back.  If your husband's nurses don't believe he will get much back, they either don't understand why his kidneys failed, or they know something that hasn't been told to you.

Bloodwork is generally done once a month, and that is probably the best way to tell if his function is coming back.  If something else needs to be checked, the doctor will most likely order it.  There is always a doctor on call, for the nurses if a doctor is needed.  If there is something you or your husband feel should be checked, press it.  The doctor can always be called to order it.  The centre I go to is a bit more laid back than what I hear most in the States are.  The nurses will collect a sample and send it off, and the doctor will sign the order the next time he comes in.  Sometimes it can be two weeks after the fact.  He relies on the nurses' judgment, because it is them that see us 3 times a week, not him.

I agree with the advice Gerald gave.  In the end, it is your life (or in this case, your husband's) and you have every right to understand and have a say in what happens to you.  Sometimes doctors and nurses forget that, and expect you to just follow them in whatever they say.

[sullidog]

yeah unfortunetly mine never reversed but that's not to say his won't.

[Rerun]

Your assigned nephrologist should have a 'card' you can have.  Once you get that you call his office and get a scheduled appointment in his office and don't take no for an answer.  Or if all they give you is a 'name' then you look it up and call his ass.

[Whamo]

I've noticed the doctors at my dialysis center vary a great degree in their personal styles.  Most are very thorough, and others seem to avoid work at all costs.  Thank God for the nurses and other support people.  They seem to really care.