Trust your instincts !

[KICKSTART]

For weeks now i have posted on here, how since i started APD i just havent felt right in one way or another. Despite attending clinic and telling doctors i was feeling worse , nothing much was getting done. I was told my hemoglobin was low , so get my IV iron then i should pick up , i was told my phosphorus was high so that could be another reason why i didnt feel right. But somehow , just somehow, my gut instinct was telling me different. Anyway they decided that now ive had my IV iron and didnt feel better to do an Adequacy test on thursday to see how i was doing on APD. But this morning i ended up being rushed in as an emergency , i got up and didnt have the strength to walk , i was shaking badly and sweat was pouring down my face , i thought i had come to the end !
Anyway as soon as i got to the renal unit they did my bloods as urgent to see what was going on and a doctor came into see me . I told him my symptoms and how long this had been going on (since i started APD) but also told him that i felt i had all the symptoms of high pottasium , fast heart , weakness etc etc. He said no it wasnt that , checked previous blood tests and said i had never had an issue with high pottasium before , so no it wasnt that , more likely i wasnt getting enough dialysis , but once my bloods came back they would know more. So i waited 2 hrs and still not back , so they decided it was more likely dialysis , said i might as well go home and they would ring me with results and plan of action. So i was just on my way out the door when they shouted me back in and told me  not to go anywhere , my results where back and not looking good ! Anyway the doctor came to me and said .........guess what .......MY potassium had doubled  !!!!! I KNEW it , my instinct told me. Anyway the outcome is im going back onto manuals for a few days to see if things start to improve ( i was never bad on manuals) So firstly APD isnt for everyone and if you think thats you , then act sooner rather than keep on with it , and secondly TRUST your gut instinct !!! I'm now back home tonight , doing manuals , sitting very quietly  (any exertion brings on the shakes and sweats) and apart from seeing to my dogs (my babies) im going to do nothing but rest for the next few days !

[okarol]

 
You could teach med school Kickstart!
Glad you're home - feel better soon! 

[LightLizard]

i'm glad it's going a little better for you Kickstart, and i totally agree with your advice to trust your instincts!
too often, doctors dismiss the feelings of patients simply because we haven't been to medical school. but i know well, from my own experience, that some doctors need to wake up to certain facts about some patients. we're not ALL dullards and fools, regardless of what they think.
i told my doctor, a few years ago, that i would not do well on interferon. i just had a really bad feeling about it from the research i had done on the 'net and from people i had talked to who had been on it.
so he forced me to go on it, more or less. i was left with no option. it was do interferon or no other threatment would be offered.
after six weeks i developed a gut-bleed and was bed-ridden for over a week. i couldn't stay awake and i was passing black, liquid stools. blood. i lost all of my hemoglobin and was rushed to emerg and given 4 units of new blood. i was immediately taken off interferon and marked as one who can't tolerate it. (duh.)
the same thing happened with me and quinine. afrer two doses my heart started shutting down. my pacemaker saved me, that day, but still, i was rushed to emerg again for observation...
now i'm going through the same routine again with atacand. a blood pressure med that dries out the lungs and leave one more likely to viruses. (nice for killing dialysis patients, hey?)
after a month of a lung infection, i have told my dialysis team that the doc either has to prescribe something else for my blood pressure, or he has to take responsibility for killing me. i refuse to take it again and i haven't taken any blood pressure medication since the lung infection began.
the infection has passed, after two weeks of antibiotics. but i will not be taking atacand again.
we'll see what happens next. my B/P is riding high, around 170 over 80, most days...

[jbeany]

Light Lizard, my bp would be high from dealing with that idiot doctor, too!

[paddbear0000]

...TRUST your gut instinct !!!

Amen sister! I'm sick and tired of dealing with doctors and nurses who won't listen to me!! My primary care doc had checked my vitamin D level since the clinic doesn't and found out my level was practically non-existent. I kept telling my dialysis neph, but he kept telling me he would give me some vitamin D if he felt i needed it. Well, my PTH finally started to get very high (it had been normal before), THEN he listened to me. I am pissed that he waited until my PTH got high enough to cause other problems before he did anything about the vitamin D issue. 

[rose1999]

I'm so glad that it is sorted at last, you must have been getting SO frustrated.  The trouble is that we are made to feel as if we shouldn't express an opinion on what is wrong but leave it to the Docs ....huh!  You take care of yourself and those babies, wish I lived nearer and could give a , here's a hug instead  a

[Jean]

Wow, kickstart, that is an amazing story. Bet you thought of murdering your neph, right on the spot. I sure hope your story is a rare one, but somehow, I would bet it isn't.

Same thing for LL, good grief!!!! I hope your story is a rare one also.

[Lucinda]

Hi Kickstart.  I will PM you but you certainly had all the symptoms of high potassium.  My potassium can be normal one day 4.2 and up to 12 the next.  Some of us are just really sensitive to potassium.  Overly sensitive in fact.  You have to be ultra careful about what you are eating.  Boring but necessary.  It does sound like yours might be caused by your treatment.  Can they reduce the potassium in your prescription.  I was on 3 and they put me back to 1.  Very scary when you legs collapse under you.  Every time I feel any weakness in my legs at all I get straight onto my machine.  I hope you are feeling better now.  Best treatment to drag off potassium quickly is insulin and ventolin.  Works a treat and you don't have to swallow and of that disgusting crap they give you for overload.  Hope you are feeling a bit better now.  xxx

[peleroja]

The only time my potassium got extremely high was when I had rhabdomyolisis due to Zocor.  Are you on statins to reduce your cholesterol?  My symptoms were an extreme weakness and tiredness.  Basically your body starts using your muscles to fuel your body.  Don't know if this helps.