TheLupusSite.com banner

1 - 8 of 8 Posts

·
Lisa_S
Joined
·
441 Posts
Discussion Starter #1
Hi all - I just got back from my nephrologist's, and I'm bummed out and angry.

First, the bummed out part - I'm leaking protein again - +3g/day, which is a lot. So I'm being scheduled for a kidney biopsy to figure out exactly what is going on - best case scenario is that it's Class IV nephritis again, which responds (in me anyways!!) to azathioprine and prednisone. Worse case is its Class V, which I understand isn't well understood and doesn't have a lot of tested treatment options yet. Does anyone have experience of Class V nephritis, and have any words of wisdom? I had some Class V lesions in my last biopsy, which is why he's raised this as a possibility. So I'm officially NOT in remission anymore, and feeling pretty bummed out about that.

Warning - rant follows!

So I've known probably for at least 6 weeks that things haven't been "right", so being a responsible patient, I went to get my lab work done, and scheduled an appt with my GP. When I went to see him, he agreed that things seem to be not right, ordered some additional tests (ANA and RF), and sent a note to my rheumy saying I should be seen. I asked about my lab work, and specifically my kidneys, and he said my kidneys function was fine. After 10 days without a call from my rheumy, :)mad: irritation #1) I call the GP, who's nurse says "Oh, I've been meaning to call you - the rheumy wants some additional tests done before you see him". :)mad: Irritation #2.) So I go back for ENA, sed rate, and complement levels. At this point, I know that something is definitely up. Coincidentally, I'm due for my annual nephrologist visit today, so I also get his regular blood work done, and.. well, see the above paragraph for how that went. Which is irritation 3#:mad:and has pushed me into actual anger. Why didn't my GP catch my kidneys a month ago? it wasn't as bad, but it was definitely abnormal. And where the bleep is my rheumatologist?!?! :mad::mad::mad: I still haven't heard from him. He also keeps crappy phone hours - 7-3. What lupie in the world can make a 7am phone call that makes any sense?!?!

I hate to rant, but I really think there needs to be a better way to coordinate health care. I don't know if it would make any difference to my treatment, or my outcome, but I hate having to be the one with the brain, coordinating, following up, etc, particularly since I'm pretty sure that I'm going to be back on prednisone shortly, and won't have much of a brain for a while. ANd that's why I'm angry and bummed out.

If you managed to read my entire rant, thanks. To be honest, just knowing it's out in cyberland has made me feel better!

Lisa
 

·
Administrator
Joined
·
10,167 Posts
Hi Lisa,

I understand you be frustrated with you doctors. They should have all been on top of this knowing your past history.

Good luck with your biopsy. I hope the results aren't as bad as the doctor thinks they might be. Let us know how it all goes.

Take care,
Lazylegs
 

·
Moderator
Joined
·
11,405 Posts
Lisa,
It can get so frustrating with doctors.:hug: I am sorry you have to go threw all this.

You are right it should of been caught earlier. That nurse sure dropped the ball.:mad:

You are so right about health care needs to be better coordinated. Take care and I hope your biopsy goes well for you.
Love,
Lyn
 

·
Registered
Joined
·
1,999 Posts
Hi Lisa,
I would be ballistic, and maybe even looking for a new doctor. Depends on how many times I battled this issue with him. Could I get calls back from him routinely, or did he pull the evasion routine often.

At the next office visit I would definitely let him know about the problem with the hours he will take calls. I agree... who of us is up or coherent at those hours of the day?

I wish you well with all this going on.
Sally
 

·
Registered
Joined
·
20 Posts
It does seem awkward - with my coverage once I have a rumy I can go direct without seeing GP -
but - at least you needn't worried about payments, co-payments deductables, getting dropped, pre-existing conditions, etcetera - :eek:

just stay on that GP nurse who 'means to call you' keep proactive.

It might be possible that the changes were quick and GP didn't get alarmed at the first reading.

hang in there & hope you are feeling better and get good kidney news soon. :wink2:
 

·
Registered
Joined
·
4,444 Posts
I would probably be thinking much the same thing as you if I was in your shoes. However, I think it's best to wait to get really mad until you know the values of those initial blood/urine results. If they were bad enough that it should have warranted a quick phone call and quick follow up, then by all means have a very serious discussion with your doctor(s) and let them know that you are upset about their slow response and expect it to improve in the future.

Kind of weird to say this... but I will hope for the outcome of your kidney biopsy to be "just" Class IV. Hopefully someone will come along with experience of Class V... especially if that's what your biopsy shows.
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Lisa,
I am so sorry that it seems everyone has waited so long to do anything for you. You are right to be angry, You should try pointing some of that at the people that have done this. It might help you to get better treatment or at best someone else at least. You are right there has to be a better way to get treatment that don't involve begging and keeping track of all of your doctors, labs, x-rays, and meds yourself. We are not the ones with the medical degrees. I thought that is why they have doctors, nurses, office managers, etc. Our responsibility is to take care of ourselves. I do understand you angry and rant anytime that you need to it sometimes helps to get it out lol. I hope things workout ok for your kidneys and that you feel better soon.
 

·
Lisa_S
Joined
·
441 Posts
Discussion Starter #8
Thanks everyone. I've sort of found my rheumy - he's on sabbatical, so I've spoken with the triage nurse for the rheumatology division, and she's going to book me in with another rheumy. I've requested someone specific, who I know is an active clinician as well as an academic, so is interested in keeping up to date on current developments in SLE treatment.

The triage nurse also gave me some results over the phone. The good news is that most of my tests are normal, so we may have caught this early. I'll keep you posted on the biopsy results, I'm keeping my fingers crossed, and trying to not dwell on the possibility of Class V!

Lisa
 
1 - 8 of 8 Posts
Top