Side effects af Renal Meds and Quality of Life issues

[per156]

Hi !

If there must be a calcium channel blocker ask them to try lercanidipine which works differently and due to my experience has milder side effects than felodipine. I guess that lercanidipine 20 mg corresponds to felodipine 10 mg in strength, etc. Lercanidipine is a generic and subventioned, at least here in Sweden.


Best regards
Per

[eliznew412]

Thanks Keith.
I went to my appointment yesterday and instead of being able to talk about being left over bank holiday without being able to change my meds I got loads of accusations hurled at me!! I was told I used my illness as a weapon ie a threat not to have RRT (the truth is I am considering not having it), that I made personal comments about her bank holiday (when I actually wanted to point out is that I don't get bank holidays and was frightened of losing my job whilst trying to cope with pain. She told me firmly that Felodipine doesn't cause acid reflux and that my stomach problems were not caused by my renal condition - I am stage 5 renal failure!! Then she suggested I change consultants. I repeated back her accusation and she denied she said that I used my illness as a weapon! I told her I wasn't a liar and perhaps she would like to apologise in writing. Its enough getting a hard time at work but when a consultant slags you off and you have no partner at home to lean on I think it downright cruel. I did put in a complaint about her but at least in the workplace they have rules about retaliation.
In any case I am not so sure she is right about Felodipine. Now that i've come off it the reflux is better but not gone away completely. She maintained that was proof but Im' not so sure that damage is always reversible. ditto the damage the renal unit consultants emotional damage of me and the Christian GP. I do think there is a dangerously widening gap socially and economically between the profile of consultant employed compared to the average renal patient or any patient for that matter!" They don't take the in-between stages of illness very seriously and quality of life during these stages. Its not so much have an illness that is such an unbearable burden its all the consequences of it and lack of support emotional and financial. I wonder how patients like me feel like giving up? It is in the end indirect euthanasia - ie push hard enough and isolate em and they quit.

[eliznew412]

The awful thing is that i don't care. In fact it makes it easier to refuse any further treatment. I've already acquired needle phobia. I managed to overcome it at the GP practice but do need a lot of TLC. The renal unit does make me feel like a burden and that any psycholoical help is extraordinary. I don't feel they really care. Its easier to give up when you don't feel they care and the longer I live and the more stressed I get the less private life I get. I don't feel they respect me either. If life was a bit kinder like paid bank holiday or appointment time paid so I didn't have to work more hours maybe I feel supported but I am finding life too difficult. I find it hard believe that any consultant really knowing that immendse stress would want to add to it, particularly when I'm not commited to having any treatment. Its really dreadful and very serious. Honest I just can't cope with yet another change of consultant, even if they turn out to be "nice" to me. Does anyone think that its right for a consultant to kik you verbally whe your down? She was told that I had just come away from the blood room not able to cope with bloods being taken. I have put in a complatint about her but it won't necessarily benefit me in any way. she made me feel like a premaddona but I'm so not.

[sporti]

Hi

I cant tolerate the Calcium Channel Blockers so they just switched me to Losartan which seems to be working well. I hope you get everything sorted and they be a little more understanding. x

[eliznew412]

i think that the fear of the NHS culture features much larger in my fear of treatment than I like to admit. It does seem extreme to want to refuse RRT on those grounds but I reckon it has caused me much more stress than I like to admit over a life time of being a renal patient. the medical profession seem to strictly ration my access to any support and make me feel very demanding. The renal consultant told me at least 4 times in the same conversation how limited they were in what they could offer. I've no idea what I need but I think I've discovered what my deepest fear was - the culture.

The odd thing is that considering all the odds against me - OA in my hand, my age (now 57 years) I managed to claw my way through the last year and a half with an intensive training course at work that left youngsters stressed and tired. There were days when I've walked into work feeling like a Zombie and spent the rest of the day clutching my stomach with pain. What was weird that even mild but deep stomach ache made be feel very ill indeed - head buzzing, faint. Just to make matters worse I have to spend all day with customer balling complaints at me and insulting me. There really is a limit to how much any human being can take. It seems ludicrous the last knife into me is one I've lived with the longest - the NHS culture - but it really is the last straw and terrifying.

Would anyone else fancy going on living if they were made to feel like a demanding nuisance or told they used their illness as a weapon? I wonder if they just pick on vulnerable patients with no partner and struggling on a low income. Apparently I can’t even say I’m hard up! If I mention anything I’m in the wrong but apparently they can say I’m hard up when they fancy.

[eliznew412]

Keith I am struggling to find the positive in this? Maybe I'll need to make a list of light chatty lines for responses - ie safe subjects when asked how I am:

"How are you" - ok thanks
"How was christmas" - ok thanks.
oh I did get asked once "How would you like to be just - normal" - (I think she was alluding to a renal transplant). What I shoudl have said "Yes great" - what I actually said "I don't know what normal is like - I wouldn't know would I?".

If there was a prize for home goals I think I'd get it with my plodding trueisms.

GPs question "How are you" - my reply "Not well, othewise I wouldn't be here doctor".

Actually when I think about whole life issues there are not many safe subjects that don't involve money. I was going to say sex but that could get to be an unsafe subject" and God forbid money related as well.

The only positiive about the call centre job I do is honestlly there's no unsafe subjects - Religion, sex, blokes, women, money. I was wondering what this consultant would have made of the conversation we had about cheap it is to live on food put out in waste bins so we can survive on £6.30 an hour and no paid bank holidays or medical appointments. Maybe the 3rd eyelid would whip across and I'd get signed up for Hep B, Hep C and vials disease.

The dialise or die warning in 2006 is now getting to be an old one and frankly currently makes the medical profeesion look about as clever as reading a crystal ball for the future... and they tell me the NHS isn't damaging. Someone should tell them that frightening their patients and isolating them with their troubles doesn't make them feel well.

[AmandaClare]

Is it worth trying a different doctor? Personally i tend to get on better with male docs. I know it's stressful to see someone new but surely no more stressful than going back to that consultant when such strong words have been exchanged.

I often get in rages at how the NHS casually wastes my time with no concept that I'm a person with a living to make and a life to live. At the same time I have good relationships with a few individual doctors and nurses. Try not to see them all as representatives of the system - some of them probably want to bang their heads on the wall too.

I've often complained of side effects to drugs - in my opinion I'm pretty sensitive to them. Some doctors obviously think that I'm imagining things. But they change the drugs anyway. Unless there's no alternative drug that's what they should do - they're our bodies.

Sounds like you're doing brilliantly overall. Keep posting, let us know how it goes.

[sporti]

Am i right in thinking you are around the 20% mark? We are both around the same age and have had renal failure a long time. Mine was properly diagnosed in 1982 but I had it before then. Im not on dialysis yet but its looming. We are all different I know as I have 'sticking my head in the sand syndrome' and just dont think about it too much and live my life the best I can. At the moment we are thinking of emigrating. Great a new experience! When the time comes for dialysis I will get a shock but im not going to let kidney failure put a halt on anything at this point. I guess what im trying to say is try to be positive it will make you feel better. Im 18% and I feel no different then when I was diagnosed at 64% as i just ignore it! Take care xx

[eliznew412]

I am sure that such strong works getting exchanged is not a good standard way of communicating but when they aren't exchanged what they get up to behind my back is much more scarey! Getting emotional behind my back (that is when I was a kid), confiding in relatives or partners and yet weirdly bracing when it comes to talking to me! I express a desire for kids, they counter it. They come up with its a good idea and I am by then tooo depressed and repressed to cotton on to the fact that I was in an abusive relationship. ..and they claim the NHS culture isn't damaging - its all me and my family that nuts. Well I have a diffeent view coz I know what its like my side of their beg protected desks.

[rheaybou]

Will happily embrace any side effects to be able to enjoy a normal life-ish.

A year on dialysis with nightly treatment will be waved goodbye with giddy glee. I think I prefer the TX drug restrictions to this of dialysis and having a HB over 10 and creatnine below 1200 will be like heaven.

[Swuzzle]

My Husband recently started taking lysinopril for HBP, and shortly after, ,started having a burning sensation in his chest. When He went to see his physician the blood work and urinalysis showed he was having renal failure?? He had had no symptoms of kidney problems. They immediately took him off lysinopril and had him back in the office the next day for more test, the Dr. stated he had expected to admit him to the hospital but that the new test showed much improvement. Can this be possible or is it more likely the org. test were wrong?

[bigbuzzard]

It would appear that it is possible, if rare (if you can believe what you read on the internet )

http://www.diabeticconnect.com/diabetes ... ng-thru-it