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Discussion Starter #1
I did something so totally foolish this morning. I refused my infusion, the nurse became so rude and even hung up on my husband when he tried to explain my concerns. It was like she did not care other then I had wasted her time, never mind it is my life and my melt down. She even told him I would be forced to pay for her wasted time and then slammed the phone down in his ear. I know I will probably pay for the visit and my insurance will not cover it, I accept that. But what hurts is no one wanted to take the time to hear me out, all I got is you wasted our time.

I love my doctor, he is wonderful but I could not get hold of him to talk about the last time we did the infusion and my concerns for the kidneys. All they kept saying is we have to wait and see or he will contact you. Well last night I was so stressed and so upset I could not sleep, none of my questions were answered to what was bothering me. Like which drug is hurting my kidneys, we know one is because they keep bouncing around and the infusion and methrotexate are my only new drugs since the kidneys went bad in the first place.

I have fears of my kidneys failing again, I have fears of having to replace my kidneys and not having any one close to even a match on me. I know I should be looking for my natural family but I just can not bring myself to do it simply because they know I exist and they chose not to know me. My granddaughter is my only match and I would never in a million years ask her for her kidney with all her health issues, it would be too dangerous for her.

So I stayed up all night battling with myself and the bottom line is I freaked and refused to have it done. I honestly tried to call but the answering service would not take a message to cancel an appointment, they told me to call when the office opened at 9 which did me no good I had to be there by 8:15. So when we got hold of them the nurse kicked into rude and would not even let anyone explain,and she slammed the phone down.

Now I am left with this feeling that all I am to them is insurance claim, money. That my feelings and worries do not matter as long as they can collect on my appointments. I just needed someone to listen to my concerns was that honestly asking too much? Maybe I was wrong, I do not know anymore. I am so confused and hurt right now, I still have not slept and can not seem to stop crying. I keep thinking maybe I made a mistake, and then I hear my inner voice say after the second infusion last June I got so sick and that my kidneys took a nose dive again, and I think about all the canceling they did because of bad numbers in my blood work. Which now makes me feel like they were actually canceling till they got the approval from Genetec for them to foot the bill. Because once Genetec said yes suddenly the infusions were back on. Am I over reacting, am I a basket case.

Right now I know I am a basket case, I am just so tired of being sick and worrying about my kidneys. Just once I would like someone to say hey we are worried about your concerns also. I have tried to stay up about this but in the wee hours of the morning and with all I have been dealing with in my life it finally hit me and I melted down, I think I still am. And no the doctor has not contacted me yet either.
 

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Hiya... no you are not mad, you are the one that stands to lose the most if something is affecting your kidneys so you have every right to question the practitioners and every right to expect the care you deserve. You know your body and you know something is not helping it, so stand firm and be sure that you are right to expect some kind of interaction with your Rheumy before the infusions continue...or not. If you are starting to wonder if you are an open cheque to them then you can not even begin to believe they are acting in your best interests. You need some support in this and hope you have that from your nearest and dearest.... try and put together a letter of explanation of your worries and explain why you feel you need to know more before undertaking more of these infusions with no certainty they are not damaging your body. I am sure it is easier for doctors to answer your concerns when they are written down concisely, rather than from somebody who is (understandably) upset by this stage. I am an ex nurse and am horrified that a nurse was rude to you when you were obviously frightened..what poor nursing care and nil awareness. Look after yourself, write it all down when you are calmer and e mail or send it off to the Dr. Make an appointment to follow the letter with somebody who can accompany you... take your time, follow your gut instinct.. you are the patient and their client, without you there would be no paycheque! You have every right to be involved with every stage of your care....stand tall XX
Claire X
 

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:hug: hi there

i'm absolutely astonished that a nurse would act that way, no wonder you're upset. i hope you write a letter to your doctor about this.

i don't know what infusions you are getting but they are suppose to tell you how you are doing. doesn't your doctor see you when you haveyo your infusions?? i know that my neuropath dr has to have an MD there to make sure i don't go into cardiac arrest. if you are scared then those concerns should be addressed. i also think by law there is something called informed consent...opertive word being INFORMED.

with everything you have been going thru you should have to be dealing with rude professionals.
don't give her a second thought and go see your doctor and write the letter. it may not do any good but it will do good for you to get it out

take care my friend and try to rest

hugs and kisses
 

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Mysticred, I don't think you were at all foolish, maybe a little shot to pieces after worrying all night but who wouldn't be. You did what your heart told you to do. You would have felt a lot worse if you had let them do it and sat there passively like an obedient child.

Sometimes we need some reassurance and who wouldn't totally melt down if that's not forthcoming. I say good on you for being so brave.....

If they can't understand what your going through, sod them!! Stick to your guns and listen to your inner voice . Sending hugs your way. :hug:
 

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The Other Illinois Tammy
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It is a simple request to have your concerns addressed. I would not do something that I had concerns about and no one had the time to answer them either. You are with in your rights, it is your body and your life on the line here. They may do this everyday and it is nonconcerning to them but you have real concerns that should be addressed to your comfort. Do not ever let someone make you feel bad for having questions and concerns. They should all be ashamed that they have not done their jobs well at all. They should be loosing sleep for not responding to your concerns or even trying to get in touch with you about them.

As for Miss Rude Nurse, I would be talking to a supervisor about all of this. She had no reason to be rude at all. You had concerns, what if you had been in the hospital and could not make it she did not even give you or your husband a chance to say why you were not coming from what I got.

I would be calling the doctors office everyday and leaving a message for a return call. I would also once I got a hold of him let him know what has happened and that you are not happy about it. These people make their money off our illnesses and should be able to give you 10-15 minutes on the phone to address the valid concerns that you have. The doctors sometimes don't even get their messages and that is the sad part of it all. I have had this happen and had a doctor walk out and yell at his staff with me in the room because he had no idea I had even called.

You have nothing to feel bad about and if it had been me I would of just left a message or told the person to talk a message. If you did not get ahold of anyone them call and ask for the supervisor of the unit and ask for an emergancy number to call for cancellations in the future. I would think about fighting those charges as you had no way to cancel in time to save her time. I hope that you start to feel better soon and get some answers to your very valid questions. stay strong.
 

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Hi Mysticred,

I'm sorry you are so upset by all this and that you didn't get your infusion today :hug: I understand your worry over it and how it might be affecting you. However I think your concerns were something that should have been discussed directly with your doctor way before the morning of the appointment :( It's not something the nurse would be qualified to answer really, although there was no need for her to be rude about it.

I hope you can sort this out soon and see your Rheumy, that's who you need to speak to so that you can feel comfortable with your decision :wink2:

love
Lily
 

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Discussion Starter #7
My doctor had been out of town for almost 3 weeks and I had called several times asking for the test results. I think I would not have melted down if it had not been the infusion is off due to risky lab numbers, no it is back on, no sorry some numbers are still risky, this went on for nearly 3 weeks. And then the matter of who was going to pay for it in the first place, Insurance, Genetech or the doctor offering to do it anyways no matter what. But he was not there during the endless roller coaster. I did try to talk to his nurse so maybe to talk to his partner or one of the other doctors, I figured someone was covering his patients. Guess they were all on vacation because no one called except for his nurse and that was to say the kidneys were doing better but not great and that my BM was rather high but those calls came before the infusion was back on. Miss Rude nurse is the one that called and said it is back on, when I explained to her what I was told she told me, you listen to no one but me when it comes to your infusions or the doctor and he is still out of the office. Her whole attitude made me feel shaky at that point. But I tried to stay open minded but the more the doubt climbed in my mind the more I felt like nobody had time to explain to me what if the infusion is what is hurting my kidneys, what happens if I go into kidney failure again.

It has been a long wait since this nurse went off on my husband and no she never gave either of us a chance to explain anything, she simply went off on my husband and hung up. Have I heard from the doctor or his staff, the would be a big fat NO. Have I called and repeatedly left messages with staff and his nurse's voice mail, Yes every day since this took place. Granted it was only since yesterday but I managed to calm down long enough to call and leave a message with a staff member and his nurse, you would think Miss Rude Nurse would have gone flying into his office to tattle on me for not showing up and that alone would make him call to ask what is going on? Guess she was in no hurry to tell the doctor she was RUDE.

While dealing with this and dealing with everything going on with Sierra. By Tuesday morning I was a wreck. At this point I have lost faith in ever being answered about my concerns. Kinda hard to get answers when no one thinks they need to return your calls. But I kept hoping, this Doctor has always been wonderful with my concerns, this was something totally new for me to deal with. Maybe it was a bad time for him since he had been out of town for those 3 weeks, I can not even say for sure when he got back, all I know since they started doing the roller coaster on and off with the infusions my faith in anything in the office was failing quickly.

My sleeping pattern is off, I seem to be spiraling in a depression because I feel like I am banging my head against the wall. Part of me feels like calling my GP and ask him to find me a new doctor, but then I remember what a nightmare a new doctor can be sometimes. So tomorrow I will call again and once again try to reach out to him and see if he will talk to me or return my call. My husband believes the nurse that was rude went to him with her own story and it was completely different then what happen to save her butt and job and maybe that is why he is not calling back. But I would never believe that of him, but once again I would never believe this, his not returning my calls or even his nurse. My husband says I have blinders on.

I felt I did everything I needed to do, when I asked could I see the doctor I was told I would have the infusion first and see him after. When I asked again to see him first I was informed it does not work that way by Miss Rude nurse. Did I mention her boss is the Doctor, no one else. She runs the infusion room and she is quick to point that out. I have witnessed her being rude before to a very sweet older woman and made that sweet woman cry. My opinion of this nurse is she is in the wrong field, she is not a people person.

I was so upset when I posted the first posting I even forgot to sign it.
Thank you for your input it means a lot to me.

Hugs, Dawn
 

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hello Dawn..a nurse who is not a people person should not be in that job! Sounds as if you are still trying hard to get a response..it really shouldn't be so full of effort..honestly:( The one thing that is hard for us is stress and effort, so they have undone alot of potential healing time for you and that is not acceptable. Well done for keeping on at them when you are feeling so low and vulnerable...keep faith in yourself, you are doing everything right, pity the others aren't. It still might be a good idea to write it all down, if only to make it clear in your head the chain of events, sometimes it can be harder to recall at a later date and your Dr needs to know what has thrown you into despair..take care and lots of hugs being sent to you.XX
Claire X
 

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Hi Dawn

OMG what a horrid nurse with so much power. I would write a letter of complaint about her.

Sorry you are having such a bad time and not getting answers to your questions .

I had my infusion yesterday the nurses there are so different to your one.

They ask before the IV for any concerns and how you were the last time you had one. Any allergic reactions.

If they dont have the answers then you can see a doctor first to discuss your concerns. Then it is your choice wether you go ahead.

I would make a list keep it simple and to the point

wishing u well

dixy
 

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Discussion Starter #10
I have been researching I put something wrong in the last post it was my BUN that was high. Which means my kidneys are having trouble. It also says that I should not be given any drug from the past that actually might be causing the kidneys to be over worked, which is my rituxan since I have been on the methotrexate since the last years infusions.

Now I am so grateful that I said no till I know for sure what is going on. Why would they even chance it without doing further testing. I feel so stupid for not questioning them and demanding the answers. Maybe my husband is right maybe I am wearing blinders when it comes to having such faith in a doctor or his staff. My doctor gave me such great hopes in the infusions, told me, promised me that they are totally kidney friendly but the site clearing states that kidneys and liver need to be watch and tested before taking an infusions and if you have a history of kidney disease you should not use rituxan. It clearly states that if you have a history it should be concerned not safe. I found another site :

http://health.yahoo.com/lymphoma-medications/rituximab/healthwise--d04255a1.html

that basically say the same thing considering kidney's and the use of rituxan but I was never once told this by my doctor or anyone else. Then on top of it all I have had a irregular heart beat since I was born, I have been on medicine to keep it under control and nothing was mentioned to me about that either or the plaquenil which I have been on for nearly 10 years. I feel like such a fool, I do not understand why these important things were kept from me.
 

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Hey,
I was wondering if your kidney troubles are caused by your lupus? If they are, then I would have thought the rituxan should help? My most serious sle issue is my kidneys, and because I can't take immunosuppressants, my kidney specialist has me on rituxan. I'm pretty sure he wouldn't do that if there was a significant chance of it causing further problems. Admittedly I don't find it massively helpful, but it's all I've got at the moment :hehe:

Either way, you obviously need to speak to your doctor (not the horrendous nurse!)

Take care.
 

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I am fuming that a nurse would speak to you in that manner:mad:
You are in no way a basket case!!! You have genuine and understandable concerns about YOUR body. You have every right to have your concerns listened to with compassion, and a full explanation to any questions you have.
I would put everything into writing, including the fact that you tried to see the doctor several times but were turned away by that rude woman. This situation could have been avoided if she had listened to you in the first place.

Take care of yourself and try not to worry to much.
Sending you lots of hugs

Elle x
 

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Discussion Starter #13
That is why Fairy I am so confused and would like answers. Last June my first infusion seem to work, I felt wonderful my kidneys took a ding but no one connected it to the infusion. Two weeks later I got my second infusion, within in a few days I was terribly sick and my kidneys took a nose dive. As for what is causing my kidneys to behave this way, nobody again is answering that one either. I had a kidney doctor till the ICU stay, and when she did not return my doctors calls last June he told me NOT to see her again he would get me another kidney doctor in the mean time he has been taking care of that part the blood work and such. I was also receiving the shot every 2 weeks to help make the red blood cells my kidneys are having trouble making. One doctor said it was meds that caused my total renal failure, other said it was my lupus. After the second infusion my doctor canceled the infusion scheduled for 6 months away. It took from June of last year till March of this year just to get my kidneys creatinine below 2.85, the range they want me in is 1.10 or lower right now I was at 1.36 but the swelling is starting again so probably due to the stress they might be over worked.

I just would like some answers. I had great hopes in the rituxan, but now I am so confused by all the conflicting stories about it. And I am even more concerned that I can not get straight answers from my doctor. I am upset he is not returning my calls. I am beginning to feel like I will not get any answers because they do not know the answers and that is why I am being ignored.

Whether or not I will do the infusion depends on what I am told. But I have decided to call my primary doctor and get his input about all this and see how he feels about rituxan with my kidneys. And I think sometimes my only other options are to go to my doctor's office and sit there till he sees me.

hugs, Dawn
 

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No wonder you're confused, I would be too! You need some kind of clear answer as to what is causing your kidney problems; is there any chance you could see a kidney specialist?
 

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You said the doctor has been away 3 weeks. His backlog of calls is probably outrageous. Most likely he is juggling the calls, his office duties and his hospital duties. I wouldn't be too hard on him yet.

At the present time Rituxan is in trials for the treatment of Lupus Nephritis. The past trials have failed even though some patients have shown improvement. Since you are unsure of why he chose Rituxan you should definitely speak with your doctor.

Take care,
Lazylegs
 
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