Doctors appointment

Ok this is just a vent because I remembered about 3 hrs ago my doctors appointment today. I understand I have to so that I can continue to get the treatment I want. But I am not looking forward to another conversation where the doctor tells me removing my spleen is the only possible cure.

No matter how many times I tell myself each appointment will be different. They all end up the same way me leaving even more frustrated than when I went in. Did I mention I hate doctors and do not wish to go. I have been dealing with this so long I have literally forgotten when I was first diagnosed. I see no need to remember the date I was diagnosed I have ITP it does not have me.

So as usual I have Goals and subjects I want to discuss;

Testing for other issues.
To get the doctor to understand that you treat symptoms not just numbers.
Ask him to fill out the paperwork so I can get Rituxan for free.
Most importantly that I am trying to save my veins and I do not want to be doing blood tests every couple of weeks.

Seriously if I'm bleeding test and treat if needed. If you treat do not make me go for blood work to show it worked we know it works. As long as my symptoms dissipate isn't that all that matters!


OK I am done sorry!

So last time I was there they were going to get me an appointment with the doctor who did the study so I could get Rituxan. Because he was the only one who could get it for me.

This time he says so did you see the doctor No i did not .... oh he says.

So what do you want duh!!!!!!! Rhogam/ Winrho unless you can get me Rituxan. (we only discussed this at my last appointment)

You just need speak clearly he says! UGH

I can get you Rituxan can you? and I won't have to pay for it? Yea he says why would you want to pay for it the cost is outrageous.

So I say sorry I couldn't print off the forms that need to be filled out by a doctor so I can get it covered by the government. So he say oh I got those forms I can fill them out.

We will see you at the cancer center so you can get the treatment.

Than he says we can fill out the paperwork and see if you can get the treatment.

He says your count is good Duh it is because I received treatment! He says oh when did you receive treatment last I do not know last time I was in emergency/ urgent care. Oh he says flips the page and says that was in January.


What the heck the last visit all about?
How the heck am I supposed to see a doctor if you don't refer me?
Why did both you and my last doctor say I have to go see the study doctor if you guys can get me the drug?
Why did you both say you can not get me Rituxan when this visit you say you can!

I'm supposed to speak clearly? Your talking in circles I can't understand you let alone try to speak clearly.

I hate doctors they are so ******* confusing I can't stand it. Can I scream now or later!!

Sorry to hear about your MD apt. I have had similar ones and leave feeling more frustrated than when I walked in. 50.00 co-pay later I'm given info I could have rec'd on the phone. Also he keeps pushing the spleenectomy. I just got diagnosed in Nov. and my platelet count is hangin in the 136-140,000 range on 10 mg of Predisone. Lets not get too hasty about taking out a healthy organ doc.
There should be ways to get the Rituxan covered.
Since I didn't comply with the spleenectomy idea he has stated that we could try Promacta but also stated my HMO would probably only cover 6,000/yr so I would be out of pocket soon.
Sometimes I think my Onocoly/Hematology MD doesn't know what to do with ITP.
Stick to your guns on what you think needs to be done. Hang in there.

Julia,
That just sounds so frustrating! Sorry you have to go through it. Not all docs are like that though, some listen and are empathetic. My doc of 15 years has been so wonderful. She is being replaced by a new doc just finishing up a fellowship in boston. I do like the other 2docs at the same practice so I could switch to one of them. Having a great doc just makes all this stuff we have to go through easier to deal with.

Julia I'd go ahead and scream now - let it out! My head was spinning just reading what the doctor was saying and I wasn't there, can't imagine what your head was doing.

And you have to stay with this doctor right? - I'm not sure how it works in Canada. I'm sorry, really I am! Next time I'd take a recorder and record everything said, transcribe it and keep a copy for your records and take a copy next time for the doctor to have so he can see exactly what he said!

Melinda the next closer doctor too me is a little over 1 hour drive. As it stands now in an emergency I drive 30-40 minutes for appointments and treatment.


So No I can change my doctor but I'd rather not do the longer drive. In all reality I should be grateful he did say he had the forms and would fill them out so I could get Rituxan.

I just find this is how my life goes I get the things I want it just seems to take a whole lot of crap before it happens. I mean if he could fill the paper work out why didn't he do it 4 months ago?

I can see why you wouldn't want to drive over an hour - only doctor I would have done that for would have been my neurologist [he was 30-45 minutes away and unfortunately has retired].

It just seems from what you said that this doctor doesn't recall what he told you or follow through - I would want to be calling to check to see if he really is filling out the paperwork for you that he said he would. And a doctor telling me I don't speak clearly - what they heck?

I guess if you stick with him you have to expect things like this to happen and be prepared - that's why I suggest recording or at least while in the office with him write things done that he says so that you have it for the next visit. Being a nurse you know you have to be your own advocate.

I had an endocrinologist I thought was good, we agreed on what should be done - when the time came he "forgot", and then he was calling me Melissa - I "fired" him and got a new one. Recently my PCP didn't go to bat for me and everyone in the clinic knew because I let him have it - funny, I stood up for myself and all of a sudden he's doing what he should have done before I got upset with him, huh? The squeaky wheel gets the grease. I fired him too, wasn't going to put up with a doctor who would not stand up for me, I was his patient & he should have done things for me, he didn't & he's gone!

You know Melinda it is situations like this that I tell people do not go to an appointment on your own. Write down questions take someone with you. That way when you go the next time doctors can't blame their issues on you.

I wonder what he would say if I pulled out a recording device and said I need to record this so when I come in next time I can say but you said and press play. lol

You see I didn't want to be the squeeky wheel I guess I could of called the office ove the last 4 months and said did he get me an appointment with the drugs study doc? I could of downloaded the forms and found a way to print them off and dropped the forms off and said if he fills them out Rituxan is free!

At my doctors practice they have patient advocates. You can request one to sit in with you, they can take notes and make sure the doctor follows through. I have never felt the need for one but nice to know that help is there.

I am 99% sure there isn't a patient advocate around here. They may have one for the hospitals but not for private practices!

I don't know Julia - you do need to follow what you tell our patients though. I have asked people before would they put up with "cr*p" from their child's pediatrician or their pet's vet? Usually the answer is no, but they do put up with it for themselves which doesn't make sense. I just won't do it anymore - doctor doesn't treat me right, or talks down to me or won't stand up for me and I just don't need that person in my life muchless taking care of my health!

But I'm a fiery Leo so maybe that's why.

I'm a tired old leo! Always was crappy at standing up for myself.

Oh Julia I should have said I'm a fiery old Leo - think I've gotten more fiery in my old age too.

Hugs!