Sick of not being consulted! Can I do anything about it?

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Sick of not being consulted! Can I do anything about it?

Postby Duker5 » Tue Jul 26, 2016 10:15 pm

I went to dialysis tonight and found out through looking at my prescription that they've lowered my dry weight from 63.0kg to 62.5kg, this is after a conversation the other night when I was asked if I think I've put weight on, I wasn't eating properly but now am so I told them that yes I believe I have put some weight on, so why they've lowered my dry weight without consulting me I don't know.

Also because I have such a fear of needles I always have the EPO injection into the dialysis machine and have done for at least the last 9 months but apparently all of a sudden they've changed that as well and it says on my prescription 'sub cut' which I'm told means either in my arm or stomach, I said neither, I want it in the machine as usual to which they refused due to the doctors note on my prescription saying I have to have it 'sub cut' so basically I refused to have it and told them if I can't keep having it in the machine then I won't be having it anymore!

I'm just sick of not being consulted over anything and I despise the consultant I've now got, as he's an ignorant sod and doesn't listen to a word I say, and I want to change back to my old consultant who never left, I was simply told my consultant had changed and I've not been happy ever since that day, and there's been a breakdown in communication and I will not speak to my consultant anymore as he's just so rude and ignorant.

Everyone keeps saying they know what's best for me and my body but they don't.. it's my body and I know what works for me and what doesn't and when it comes to the EPO injection they say it works better when injected into the skin but whether in the skin or in the machine it goes into my blood and into the machine anyway!

I'm sick of them thinking they can take control away from me when it's my body and my treatment and no one knows my body like I do.
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Re: Sick of not being consulted! Can I do anything about it?

Postby rheaybou » Wed Jul 27, 2016 10:05 am

I know that from my own personal research that EPO injections into themuscle/under the skin have a better result, if put into you lines then this should be done at washback or during the last 30 minutes into the venous line. However from past expereince I know that in dialysis units it is mainly given to patients in an area at the same time, with them coming on at different times it can be a struggle to give it via lines at the same time. I have dropped you a personal message as I think we attend the same hospital.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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Re: Sick of not being consulted! Can I do anything about it?

Postby wagolynn » Wed Jul 27, 2016 3:02 pm

Hi Duker5,

EPO - rheaybou has hit the nail on the head, injected into the lines (unless it is done at wash-back) some of the EPO is simply washed out.

I am sure your hospital will have a PAL's go to them and tell them of your concerns.

I have found that, by showing interest in my treatment, I have reasonable questions for my consultant, and therefore the consultant is happy to discuss my treatment.
Of course, I never suggest my consultant do not know their job, I take great care to frame any questions so that they cannot be interpreted as a challenge, after all even consultants are human.
Listening in the waiting room it would appear the majority of patients are quite passive, and never ask questions etc. so it is not surprising that doctors and nurses are not used to patients who show interest.

Reducing your dry weight will not be due to you apparently putting weight on, if it were they would have increased your dry weight.
The reduction in dry weight is more likely to be due to having too much fluid left after treatment.
Bear in mind dry weight, initially, is an intelligent guess, and will have to be fine tuned as more information becomes available.

Best wishes.
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Re: Sick of not being consulted! Can I do anything about it?

Postby Duker5 » Wed Jul 27, 2016 5:46 pm

rheaybou wrote:I know that from my own personal research that EPO injections into themuscle/under the skin have a better result, if put into you lines then this should be done at washback or during the last 30 minutes into the venous line. However from past expereince I know that in dialysis units it is mainly given to patients in an area at the same time, with them coming on at different times it can be a struggle to give it via lines at the same time. I have dropped you a personal message as I think we attend the same hospital.


Thanks for replying,

I've been having it in the machine now for at least 9 months and they've not battered an eyelid till now! And they usually give it at the beginning if blood pressure is 'ok' i'll reply to your message shortly.

wagolynn wrote:Hi Duker5,

EPO - rheaybou has hit the nail on the head, injected into the lines (unless it is done at wash-back) some of the EPO is simply washed out.


Isn't that the case anyway whether given in the machine or injected into the stomach or arm? Because either way it's going into the blood stream, and the bloods going through the machine to be 'cleaned' anyway so it's going to be washed away either way surely?

wagolynn wrote:I am sure your hospital will have a PAL's go to them and tell them of your concerns.

I have found that, by showing interest in my treatment, I have reasonable questions for my consultant, and therefore the consultant is happy to discuss my treatment.
Of course, I never suggest my consultant do not know their job, I take great care to frame any questions so that they cannot be interpreted as a challenge, after all even consultants are human.
Listening in the waiting room it would appear the majority of patients are quite passive, and never ask questions etc. so it is not surprising that doctors and nurses are not used to patients who show interest.

Reducing your dry weight will not be due to you apparently putting weight on, if it were they would have increased your dry weight.
The reduction in dry weight is more likely to be due to having too much fluid left after treatment.
Bear in mind dry weight, initially, is an intelligent guess, and will have to be fine tuned as more information becomes available.

Best wishes.


I'll have a look into it, i'm sure I read somewhere about a patient liaison service. I've never suggested my consultant doesn't know his job BUT unlike my old consultant, this one doesn't listen and is ignorant and rude! And in all honesty I don't watch what I say so they don't interpret what i'm saying as a challenge, because I don't believe I should have to watch my words, with respect the consultant should be willing to listen to me as well, but this 1 doesn't.

Also this whole dry weight thing, they asked me if I feel like I've put weight on and I told them that yes I did, so why they've lowered my dry weight I really don't know! Because if I've put on physical weight the only reason I can see for them lowering my dry weight without consulting me is if they've assumed the weight I said i've put on is fluid, when it isn't yet they're wanting to take an extra 500ml's of fluid off me when it's simply not there to take.

And they've been 'fine tuning' my dry weight for nearly 3 years now, i've been on dialysis that long now, almost 3 years.
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Re: Sick of not being consulted! Can I do anything about it?

Postby wagolynn » Fri Jul 29, 2016 4:05 pm

"Isn't that the case anyway whether given in the machine or injected into the stomach or arm? Because either way it's going into the blood stream, and the bloods going through the machine to be 'cleaned' anyway so it's going to be washed away either way surely?"

It takes time for the injection to find it's way into the blood stream, hence much more of it is retained. Also your system sees it as a slow infusion rather than a sudden shot.

Re Extra fluid off - have you tried the 'dimple' test for excess retained fluid? If you do show dimpling a few hours after dialysis then your dry weight is too high. The fine tuning of dry weight takes several years, and due to the patients 'true' weight changing as appetite fluctuates it never really ends. There are electronic ways of checking dry weight but they only appear to work on truly average patients, the further the patient is from average the greater the error.
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Re: Sick of not being consulted! Can I do anything about it?

Postby JMan » Mon Aug 01, 2016 6:25 pm

Re your consultant. You have the right to stick with a consultant you work with, unless he's unavailable for some reason. Patient choice.

When my hospital trust switched over renal to a new consultant (they rotate every now and then) I went to the new doctors 'welcome clinic'. Sat through his rather smarmy self promotion and then told him. I'd rather stay with Dr X thank you.. He couldn't be rid of me fast enough and I'm still with the consultant I work well with.

I'd formally write a letter saying you are unhappy with the way you have been treated, and that you request your care to be transferred back to the other consultant.
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Re: Sick of not being consulted! Can I do anything about it?

Postby chrisb » Sun Aug 07, 2016 2:49 pm

When I mentioned the appropriate time to give EPO,after reading these posts, I was told that it was out of date thinking that it's effectiveness was 'washed out' unless administered during wash back or towards the end of a session, and that now it is considered entirely appropriate to administer anytime.

I was asked the date of the medical reference this information was obtained from, which of course I was unable to give. I am n wondering if this is correct or if they were just fobbing me off so they can carry on giving it when they prefer.
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Re: Sick of not being consulted! Can I do anything about it?

Postby JMan » Wed Aug 10, 2016 6:45 pm

NICE guidelines found here:

Round about page 15..

"When prescribing ESA therapy, take into account patient preferences about supervised- or self-administration, dose frequency, pain on injection, method of supplying ESA and storage. [2006]"

AND

"Providing ESAs
1.3.6 ESA therapy should be clinically effective, consistent and safe in people with anaemia of CKD. To achieve this, the prescriber and patient should agree a plan that is patient-centred and includes:
continuity of drug supply
exibility of where the drug is delivered and administered the lifestyle and preferences of the patient"

https://www.nice.org.uk/guidance/ng8/re ... 1046844101
"Dialysis! What is this? The dark ages!"
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Re: Sick of not being consulted! Can I do anything about it?

Postby wagolynn » Mon Aug 15, 2016 3:14 pm

Hi Duker5,

This explains why they want to inject EPO subcutaneously. http://www.nataonline.com/np/415/erythr ... al-failure.

It is a bit technical but I think it explains why.

Best wishes.
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